welcome to the club

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think  that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all-encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will  help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.

And I will be here for you. Every step of the way.

With love,

Jess

photo by Kathleen Connerton

Edited to add -

I recently wrote a post that unwittingly made a perfect post script to Welcome to the Club. Please, especially if you’re new to this journey, click HERE to read it. Warmly, Jess

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416 thoughts on “welcome to the club

  1. Um, Hi. I just started reading your blog last week. I am a lurker…I can’t usually say much mostly because I don’t know what to say. You see… I have been at a loss for words for about two weeks.

    I know you aren’t talking to me, but you must know that you ARE talking to me. I hear you and I feel okay. I feel that what ever we are dealing with in my little family, that it is okay and it will be more than okay. I thank you for that. More than you know, your words inspire people who don’t know you and you don’t know. Thank you. Thank. You.

  2. Oh, Jess, this took my breath away. (Let me tell ya, crying without breathing? Not so good…)

    Such beautiful and important words —for all of us on this journey of parenting our challenged children. I’m feeling raw and vulnerable today —and ineffectual as a parent. I needed these words just as much as the mom of the newly diagnosed.

    Thank you, thank you. You forgot to tell your friend that she could well find her greatest source of comfort and support comes from people she’s never met in person. That her heart can expand even more to love the children and the families of “strangers” who share the journey, share their wisdom, their own fears and pain, and their unbridled joys.

    Love.

  3. Beautiful and true. You and your writing. You put into words things I want to say, but never could articulate. Thank you.

  4. Oh, yes. This is what I needed when I felt so dark and alone so many years ago. No one told me that it would be okay! It’s different, and often times very difficult, but it’s okay. But my favorite part? “You’ll find your village.” I’m so glad you’re part of my village, Jess. Thank you. And, love. xoxo

  5. Wow! I don’t know how you do it with such perfection…the words are perfect every time. This is so important to hear!

  6. You’ll discover unexpected ways to use the untapped gifts you once thought you would never, ever find use for…

    like the way you’ve discovered to comfort us all with your beautiful writing Jess. This is definitely something I will share with those new to the club…

    Thank you for taking time to share your gift. You’re making the world a better place.

  7. Amen. My favorite part? The quilt analogy. I’m envisioning each of our kids with these beautiful patchwork cloaks, no two alike yet woven with similar threads. Amazing.

  8. On a weekend where I found myself feeling hopeless, even helpless….because I had to give one of my angels medication….because we just couldn’t see him run all the time…because we were just worn out….because I feel like I failed, and I don’t know if I did the right thing…Thank you for reminding me that maybe tomorrow I may feel a little better. Thank you because you are all of us rolled into one, sometimes picking us up, and sometimes saying the right thing to help us keep going when we don’t think we can live do it anymore Bless you.

    • My son takes medication every day. Don’t feel like a failure. People judge me when they find out we medicate but his life has so much less anxiety with meds. He makes friends with meds. He can control his body and his emotions with meds. He finally sleeps with meds. He can take several general Ed classes even with bullies with meds. He is no longer in constant fight or flight, he is no longer under the desk with pencils up his nose desperately trying to get people to laugh with him and not at him… with meds.

  9. well, i think you’re a gifted writer, so it makes sense you would generate gifts for others. over time, this is going to printed out, taped on walls next to computers, many times over.

  10. Okay. Required reading. REQUIRED.

    Can they just give this to every diagnostician and tell them, “Oh, after the parent falls on the floor, make sure they have this?”

    Might save everyone a lot of heartache.

    Snarkiness aside, this is simply perfection.

  11. Wow… until this minute I did not realize how far I had come – from suffocating fear to faith and hope. Thank you for putting our journey into palpable words. Beautiful.

  12. This is the first chapter of the book I dream of, the book of help and hope for parents joining the club. It is perfect. I wish I’d written it. Yes, what you said. Yes, parents in the club, new or old, we are here for you. You have our support. We are the other parents in the club, and we care, and you are going to make it!

  13. I’m guessing I’m not the only parent of a child on the spectrum who read this while nodding my head in complete agreement as you nailed point after point.

    Isn’t it amazing how alone we all felt in those moments, and yet there is in entire community of people with a shared experience that can be almost identical?

  14. This is so beautiful. Thank you for sharing such an inspiring letter…what an amazing feeling – to feel understood.

    We recieved our son’s Down syndrome diagnosis 10 months ago…and while I do wish that I had seen this then, I certainly am glad that I came across it now.

    xo

  15. Wow. That was so eloquent and written just for me. I am in the Mom of a Child with Down Syndrome Club, and it took me awhile to be able to breathe. Please send this to everyone you can who is dealing with a diagnosis that is difficult to bear. I know that I never, ever would have believed that looking back, one year after learning of Benjamin’s DS, that I would be as okay with it as I am. I never would have believed anyone, no matter how much they meant it. But it doesn’t mean we shouldn’t try. :)

  16. Just beautiful. I am a fairly new member to this club, as my daughter Katelyn (almost 3) was diagnosed with autism in January. I also have an 11-month-old baby girl and there are many times that I feel like she is not getting the attention that she needs. But she is very resilient and independent already at her young age. I have high hopes for her that she will be an amazing little sister to Katelyn. She already has that way about her.

    Thank you for sharing this amazingly inspiring letter. It touched my heart and spoke volumes.

  17. So beautiful! I recognize that “cloak” my daughter has Down syndrome and I thought that “cloak was going to suffocate me at first but now it seems to be getting a little lighter to wear.Thank you for such beautiful words.

  18. As you know, even veterans like us somehow end up wearing that nasty old cloak again. I’ve been feeling a bit suffocated by it lately, and your words really helped me today. Through you, life is reminding me to ask for help.

  19. i am overwhelmed by the response to this. to those of you who are visting for the first time, welcome.

    i ‘m so pleased that you all have found value in these words and that you have, in many cases, chosen to share them.

    i am so very glad that each and every one of you is part of my village. i am incredibly blessed.

    • To Jess, I cried & cried reading this…. I felt like FINALLY, FINALLY I have been accepted, FINALLY,… I am no longer isolated … someone else knows & understands my fears, my hopes, my dreams, my joys and my sorrows….. my Heart! I have been wearing the cloak for 13 years now! My daughter, at the age of 5, was diagnosed with a rare genetic disorder known as 22q11.2 deletion! The heartache, guilt, isolation, fear, and lack of compassion and understanding from “the world” have almost taken their toll on me! Jess I don’t know you but thank you so very much for giving me some peace and letting me know that it WILL be ok … that is all I have ever wanted …. for things to just be ok! Many Blessings to you and yours……

  20. This is my first visit to your blog, I linked off of someones update on facebook. I want to thank you. You have no idea how much your words resonate with me.

  21. You are the most amazing woman I have (n)ever met!! Your posts make me laugh, cry, feel hope, and feel understood. I never quite know how to respond but I had to after I read this – this one is one of my all-time favorites! I plan on sharing it with the support group I belong to – I hope that is OK. I wish I had read this years ago but am blessed to have it now. Your journey is so familiar. Thank you for sharing!

  22. Someone just posted this on our Down syndrome pregnancy board to support a newly diagnosed expectant parent. It fits right in. It really expresses what all of us try to convey to our new moms. I know the diagnosis is different, but the feelings are still so accurate. Thank you.
    Nancy I.

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  24. My dearest Jessica,
    Your last paragraph says it all. You have always taught me far more than I have taught you. I have benefitted more from being your father than anything in my life. You are my hero as your babies (both of them), will be for you. What a great piece in time for Mother’s Day. It says it all about parenthood.
    I am so pleased for all of us that you have found your voice as it is a voice that echos everyone’s thoughts and feelings in the most eloquent manner possible.
    I am a very grateful daddy to have you as my child who has grown into a woman far beyond anything I could ever have dreamed.

  25. Sharon ~ I am so touched by your incredible comment. I know how hard it is to look back on things you wished you’d handled differently. I’ve spent far more time in that place than I’d care to remember.

    But as I said to my friend in the letter, ‘don’t let yourself live there for long.’

    Last summer, I wrote about a situation with my older daughter, Katie. The story went as follows ..

    “Out in the yard on Sunday, Katie had a typical 7 year old moment. She and Brooke were playing with a parachute and Katie had wrapped herself in it, shutting Brooke out. When Brooke tried to work her way in, albeit none too gracefully, Katie grabbed it away from her and shouted at her in a huff, ‘Well now you’ve gone and ruined it all, Brooke.’ I looked over and said, quite calmly, ‘We don’t speak that way to each other in this house. You’re done with the parachute.’

    She almost immediately began to cry. I called her over to tell her that I understood her frustration but I explained that the lack of respect that she had shown sister was unacceptable. I asked if she was crying because she was no longer allowed to play with the parachute. “No, Mama,” she said. “I’m crying cause I just feel really sorry. I didn’t do the right thing at all and I feel so sorry now and I don’t know what to do.”

    My smile confused her. I had to explain that I was smiling because feeling that way meant that she is a good person who made a regrettable choice. It also meant that she was learning something. I told her that feeling like she didn’t do the right thing meant she had the chance to a) apologize for it b) make it right and c) figure out what the right thing would have been so that she could make sure to do it next time. Thankfully, although she may not get a do-over, life will likely give her lots of other chances to do what she now knows is right.”

    The hurt can be good when we let it guide us toward what we know is right. It sounds like that’s exactly what you’ve done.

    We all wish we’d been more sensitive or had more compassion or been more tolerant before. Now is our chance. Guided by our love for these incredible kids, we can’t go wrong.

    Sharon, your love for your children and your grandchild shines off the page like a light.

    You are a wonderful grandma and both Emma and her parents are incredibly blessed to have you.

    Thanks so much for writing.

    And thanks to all who have shared these words. I am still in awe of the way that they have made their way through the ether, into neighboring ‘villages’ and across the world. I am overwhelmed by the power of people to find one another in the darkness and to help shine a light into a hopeful future.

  26. Jess, As I sit here crying (feeling very sorry for myself) I can’t find the words to thank you enough. I am the grandmother of a recently diagnosed granddaughter in OK. I live in CT. I was estranged from my son and Daughter in Law for almost a year because of my insensitivity and fear that they were not aware of what was going on with their daughter. I am not rich and neither are they but we are all richer because we have Emma. Emma is nearly 3 and I want to be with her and her parents to help in any way I can. Right now all I can do is educate myself and stop feeling sorry for myself. Reading the words that you wrote helps me to see what it is they are going through. Please don’t ever stop writing. I need to read your words. You have given me an insight and I know the more I read the more I will be able to help them, even if it is quietly praying for them to take care of themselves. They will take care of Emma and they will do a damn good job. I don’t have to fear that now. thank you. thank you and God Bless you.

  27. Dear Jess,

    I know the moment I found my voice. I am still looking for my village. I have not figured out how to find the time. I have taken the cloak off – but only for brief moments, not yet for a full day. I am sincerely grateful for the people who have restored my faith in humanity. But most of all I hope the quilt we build will always keep him warm and safe and wrapped inside of it I pray he will know how much he is loved.
    Thank you for this,
    Christine

  28. It has been eight months since my daughter’s diagnosis and I still feel like a new member of the club, experiencing all the grief, shock, fear, confusion, self-blame, and loneliness you so eloquently described. But time is a funny thing. It’s hard to believe that just eight months ago, I had never heard of ABA or sensory seeking behavior, and I lived under the misapprehension that autism does not affect girls.

    Your essay spoke to me and comforted me, and I know that when I re-read it in the next few months and years, it will take on a new meaning and serve as a reminder of how far I have come. There will always be a part of me that longs to tear up my virtual membership card to this club and race back to the life I knew and had expected to lead. But since I can’t, I dream instead of all the changes and progress I will see in my daughter as my family and I travel down this road, supported by friends, a team of experts, and the village you have welcomed me into. Thank you.

  29. Thank you.

    My son was diagnosed about a month ago, and he just came home (2 weeks ago) from 10 days in an inpatient psychiatric unit – he’s 7. I still feel very alone, and I can’t open the books yet – I know the time will come, but right now I can’t.

  30. sixgreenzebras ~

    take your time. breathe. you’ll get there.

    wishing you and your dear son all the best.

    and please, please know that you are NOT alone.

  31. Hi.

    Thank you for sharing that beautiful, truthful letter! My little one is 5 years old and some days it seems like yesterday that I heard those words that he has a rare-life-threatening disorder. He is doing great and he has taught my whole family sooo much.

  32. I stumbled in here by accident. But it wasn’t an accident. Your words above are exactly what I needed to hear at exactly the right time. Thank you for reminding me that I am my child’s mother because no one else could be, and he is mine because he wanted no one else. Just reading that somewhere out there is another set of parents, other moms who KNOW, is enough for now. Thank you.

  33. What an amazing letter! It made me cry when I read it, because the words are everything that I have thought over the last 3 years since my daughter was diagnosed with autism. She was diagnosed at age 2, six weeks after my son was born. She is now 5 and considered high functioning, but it is still very challenging. Thank you for sharing.

  34. HI JESS! It was really nice to get an opportunity to speak with you last friday at the kickoff event!
    Your blog info was shared with me last August – I just found the original email!
    I can’t believe I neglected it! This is the most beautiful, ,profound, heart wrenching, hope filled letter a parent could ever read for the newly initiated into the ASD world! I also checked out your Austism Speaks page – loved your touching words on Autism Speaks Brooke can fly, but she can’t do it alone…… Tears in eyes…. On my page I posted the letter to my son inspired by you. Here it is… Hope to hear from you soon!

    Kris

  35. Wow! What an amazing letter. Blurry eyed. At a loss for words. Every bit true. I wish I would have read this two years ago when my son was diagnosed. Thank you for sharing it.

  36. Jess – This is my story! It is amazing that we feel so all alone but yet we are walking this path together!
    Thank you for sharing.

    Sharmel

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  38. I alone have been coping with my daughters Austism for 20 years now and this poem you wrote touched me. I am on the verge of giving up . I am so tired and it seems like just when you get the school system navigated and the child settled and the staff on board it is time for them to leave. I am so afraid of the next step and I am not sure what to do, your poem and words help some. TY

  39. Thank you for this beautifully written post. Your words are profound and candid and heartbreaking. You capture what many of us are struggling with — trying to make sense (if possible) of a heavy diagnosis and trying our best to move forward. I look forward to reading more of your blog. So very touched. Best, Katie

  40. i’ve always known that my daughter (now age 9) had autism…from the minute i brought her home….i just knew. i was her advocate, i fought for her, i had her tested over and over, i drove her to all of her therapies (and still do), i talk about it to everyone we meet, i educate others, i teach others…. but how come i still feel guilty, angry, sad? how come, after all these years of being so “out there” and “such a good mom” (according to everyone else) i feel like i’ve failed her? why do i still fight with her? why do we still yell at each other when i know (and i mean i REALLY KNOW) that it is not that she “won’t”…it’s that she can’t? i’ve accepted the words “sensory integretion”, “generalized anxiety disorder” and “aspergers” but why can’t i accept all that comes with it…even after 9 years? why does this still hurt so terribly?
    i was just introduced to your blog today through autism speaks and i am sure, just by reading your words here, that i will find the answer to all of my questions…and fears.
    i love my daughter (actually daughterS as she has a neurotypical twin) with all my heart….i just can’t love this condition…. i haven’t found “the gift” in it that everyone talks about…. and i wonder if i ever will.
    thank you, jess, and i hope that your words will help me with my journey.

    • Kim –

      None of it is cut and dry. It’s sticky and messy and joyful and painful. It’s elation and rage and guilt and pride and while we’re trying so desperately to work our way through it all, the business of life just keeps on going.

      I don’t know if you’ll find answers here per se, but I do hope you’ll see that you are not alone – that we all walk this path bouncing off the extremes of emotion day by day, minute by minute.

      The anger? The blind rage? Yes, those too. I wrote just last week about it here …

      http://adiaryofamom.wordpress.com/2009/11/03/the-storm/

      I wish I had answers. I don’t. But I’m guessing that you have your own. Sometimes we all just need a little help figuring out where to find them. I know I do, which is precisely why I write.

      Good luck my friend. We’re all walking with you.

    • Kim,

      I am on a very similar journey as you. Daughter, 11, diagnosed at 6, asperger’s, generalized anxiety, sensory issues. She and I fight a bit less now a days, but when I feel that frustration and anger brewing sometimes I just have to walk away because I don’t know what to do with it. Know that you are doing your best. There will be a gift, but that gift may first be you getting to know yourself so much more intimately than you ever have before. That is what I had to do. Recognize myself and others I love in her and work from there. Look at how those things affected me or the person I see it in. How we coped with it. Only then was I able to say to her, “I get this. I really do because I deal with it also.” or “You know, (so and so) has this problem too. I talked to them and this is what they said they do to help themselves.” It makes a huge difference. I also do this with my undiagnosed son to help him understand what his sister is going through a bit better.

      I also will not say that the diagnosis is a blessing. However, it is what it is and she is who she is and I would not change many pieces of her for the world. And I know that much of what I would like to change helps to make her who she is, then I feel guilty about wanting to change those things.

      Many days I wish it were so much easier. More of what I expected. But it is not. I also know that every step is making her and me better people.

      My support is here for you if you want it. kdflouhouse@gmail.com

      Kim F.

  41. WOW! I really dont know what to say except that I am new to the “club” and you beautifully put into words some of how I am feeling. My heart feels like it is stuck in my stomach at all times and I feel completely inadequate as to knowing what the “right” things to do for my son are. I question everything: all of my decisions at home, school (IEP), and therapies. I just hope and pray that in the end I am able to do what my son needs and am able to be the mother he needs me to be while also being able to carve out time for my neurotypical children as well.

  42. Jess,

    My sweet cousin was diagnosed with Autism. He is 4 now and a beautiful, wonderful, sweet, amzingly fantastic child (as he always has been). But, I have always struggled with talking to his parents about his autism…mostly out of guilt. Guilt that my children were different from him, guilt, guilt, guilt. Now, I embrace each and every moment I have with his family. They are inspiring, strong, courageous, stimulating, encouraging parents; just as he is a child. Your words ring true, so pointed and real. Thank you for sharing your graphic and passionate feelings. You speak to so many. Thank you!

    Kayla

    • Kayla,

      The guilt is understandable, but get rid of it. Instead teach your children to be kind, generous, and loving to all people no matter how different. Some people are not open to talking about their child’s diagnosis because they do not want to assume that everyone wants to know. Ask them, if they don’t want to answer fine. But by all means ask. It may be the greatest blessing you can give them, for them to know someone else is interested in their son for who he is.

  43. Jess,

    I remember being at the bottom of that hill and you have described so perfectly the sense of sheer horror at the future and inability to fathom the climb. Yes I’ve worried about the other children but I’ve finally found a way to give them the “normal” time they need like actually baking cookies! None of my friends could understand why that was so exciting but my behavioural therapist said WHY DIDN’T YOU CALL ME?? I think every person who reads your amazing letter will relate to that. I honestly feel that I’m nearing the top of the hill now. My Asperger’s boy is 11 and with massive effort from all involved, has changed so much over the last year or so. Thank you for verbalizing so beautifully what all of us need to hear!
    Janet

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  45. Jess, I’m speechless. I feel as though God was speaking right to me reading this post. It is empowering & addresses every thing a special needs parent–at least I–have experienced, worried about, cried about, learned… Thank you.

  46. Just got my sons diagnosis yesterday…was given the link to this specific blog…and WOW! I was in tears reading it. I have know since he was an infant something was different, and I suspected autism, and now, I am just not sure how I feel since my emotions are all blurred together. But what you wrote here is so amazing. I think I need to print it out for myself. thank you for sharing

    • Elysia-
      I have seen your comments on two of Jess’s blogs today. I can feel your anguish in your words and I wish I could reach through this computer and take you by the shoulders to tell you we are out here, and we’ve all been there and you can stand on our shoulders. Sending you love.

  47. I don’t even know how I found this blog today. I clicked on links from other blogs and just started reading. One of the clicks lead me to this post.

    Almost a year after you wrote this precious letter, I found it.

    And as I sit here crying, I’m overwhelmed at how perfect your words are. How perfectly you understand. And how perfect God’s plan is, for I believe He led me here today to read these words.

    Thank you, sweet stranger, for sharing this.
    Donna Murray

  48. WOW!! That’s all I can say ~ WOW!! My son was diagnosed (PDD-NOS) in Jan. ’09, but now it almost feels like a lifetime ago. How perfectly you expressed what I too have felt ~ the guilt for feeling like I missed something/could’ve done something differently, and the guilt I feel for possibly not spending as much time with my daughter. It’s a slippery slope we walk when raising children, each with their own set of needs ~ neither ones needs more important than the other per se, just different in my opinion. I’m glad to say that I am at the point where I don’t wear the cloak as often ~ it spends more and more time hanging in the closet. :)

    Thank you for writing this ~ I feel like you pulled it from my own heart & soul. Beautiful and beautifully written.

  49. God bless your words. Your blog is exactly what I needed right now. A friend sent it to me today. I felt like you were writing from inside my soul. Of all of the things I feel, being alone and to blame are the hardest!! I will print the welcome to the club letter off and read it every morning just to remind myself that I am not alone, my daughter is perfect, and I need to breathe. Thank you for this gift. Continue sending us words of wisdom! Sending prayers your way.

  50. Wow! I couldn’t have said any of your words any better! It’s like we are living the same life.
    Your writing was very encouraging while at times I have moments of doubt as we are meeting new challenges daily with our 9 year old daughter.
    How great it is to know that I am not alone on my journey. I cherish the opportunities to be an advocate for my daughter and am proud to call her “mine”!
    I just came across your blog last week and look forward to keeping up with you as we are on this journey together.

  51. Hi. I recently stumbled across this letter. I don’t remember how I found you, but I did. This letter connects with so many “special” moms. Not just Moms of kids with on the autism spectrum, but moms of all kinds of kids with special needs. My son has CP. And I want to share this letter with the new CP moms that I’ve come across. So I’ve linked it on my blog. Thank you.

  52. Thank you for pouring your heart and soul into this letter and for showing us in words your courage. I felt like you were writing this to me. I hope that it’s okay if I like it on my blog. It’s very powerful and I know some other moms of autistic children in my community who would truly benefit from your insight. Thank YOU!

  53. That letter was like the hug that I so needed as I sit here doing SOMETHING at midnight. I can’t do NOTHING. How can you do NOTHING 2 weeks after a stranger looks at your little boy and says Autism. I don’t know how I’m still standing after doing SOMETHING every minute of the last two weeks.

    I have printed this and will read it tomorrow. And the next day. And the next. And I will breathe. And I will eat. And I will sleep. And I will pace myself knowing that there will be an end to this suffocating feeling.

    Thank you so much for this.

  54. That was incredibly beautiful. Thank you from the bottom of my heart. There are days I feel I cannot breathe anymore. Your words were like a breath of fresh air! Thank you!

  55. Thank you so much for this. Your courage and honesty is amazing and inspiring. I too will keep this handy for the days when I just can’t make it through.
    I’m so thankful to have found your blog and many others – it’s wonderful to have this community of people who “get it”, even in a virtual way. You and others have inspired me to start blogging myself – even if I’m the only one reading it, it helps to write it all down to get the frustrations out on “paper” and not on others around me.
    Thank you for being there for me and others like me.
    Alysia

    http://trydefyinggravity.wordpress.com/

  56. Thank you for writing this. It’s amazing how you have put so much compassion and understanding into words. Thank you for allowing me to cry and not feel alone.

  57. I’ve been an occasional lurker on your blog for awhile now and just want to thank you for what a leader you really are for parents and families. I remember reading this post quite awhile ago, sobbing with the gratitude that someone else *really* understood, and at the same time cursing the damn club that I really did not want to be welcomed into.

    I come back to it every now and then, at those times when I just can’t handle the upbeat stuff, when I’m questioning how God possibly thought I was up to this task. The times when my heart feels like a lightbulb that just shattered on the floor, and I can’t begin to figure out how it’s going to get put back together again. The honesty of your mix of emotions is such a relief for me, while at the same time your encouragement gives me hope.

    Thank you.

  58. Pingback: Our Autism Beginnings, Part 1 « Autism In a Word

  59. Recently diagnosed here and I’ve been enjoying reading your blog and this post took it to a whole new level…thank you :) It’s nice to know that someone, and likely many others, truly get it.

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  61. Jess,
    This is fantastic and something I’ve gone back to over and over this past year when I’ve struggled. I love reading your blog, and it gives me hope for the future. But I am at a different point, with a 2 1/2 year old diagnosed a year ago….I was wondering, do you have any recommendations for reading/blogs for those of us just beginning on the journey. I’ve tried to go through most of your “favorites,” but I just wondered what you thought.

  62. Thank you so much for this entry. You hit every single thing I have been feeling for the last month. I just didn’t know how to put it into words! I’m so relieved to know I’m not the only one having been through the same feelings. Thanks again.

  63. Jess,

    Your words were like someone illustrating my heart, my soul, my life! I live that life. I am so appreciative of you! You were able to put into words that which I could not. I am saving this and printing it out. So I can pull it out now and again, just like the cloak :) God Bless you!

  64. Thank-you.That was absolutley beautiful.Just like every child who is autistic.And the mothers who are blessed with them as their offspring

  65. Such a moving article, I LOVE it! I was sure there was no way I could do it and now I look back 4 years later and I am still here and still fighting for my awesome little boy! I am sure many parents will read this and see themself, thank you for sharing!

  66. I promise to be the very best teacher I can be. I can’t know how you feel; I can only get a glimpse by trying to imagine how I would have felt back then when my 21 and 23 year old daughter and son were just 2 and 4. How would I have handled the diagnosis?
    I can’t presume to know how you feel. But I can promise that I will use every moment of experience and every bit of knowledge I have to be the best teacher I can be. I will never give up on a child. I know that miracles happen every day. I’ve seen more than one child in Pre-K whose parents were told he would never speak, carrying on conversations in second grade.
    I teach 3 and 4 year olds with autism. There is nothing I would rather do. I hope I can give some hope and comfort to my students’ parents along the way.

  67. Pingback: The BEST post yet… « Notes From a Special Needs Teacher

  68. Not many things touch me anymore, I have my emotions under control always, it is very important for clinical reasons….but now I sit here teears rolling down my face….I could have written this, this just took me down a 6-1/2 year memory lane….It is so comforting to know that there are others who feel things that I keep in my heart….I needed to cry today, sometimes I forget….so thank you for this…..I always say, “If I feel frustrated, angry, scared, alone etc. in this amazingly, happy, and horrible (at the same time) world I call the spectrum, imagine how my child must feel”…Thank you so very much for sharing, I plan to start a blolg today!

    • kristie – i’m so glad. tell your story. one story at a time, we can change the world for our kids. come on back here with a link when you get started!

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  70. What a touching story!!!
    tyvm Jen :)!
    I have a few questions….
    What could I do or suggest to my 13yr old daughters father who is a deadbeat dad and totally DENIES that our daughter has autism and several other disabilities that hold her back?!! He tries to keep her disabilities a “secret”, even from his family!!
    Also, my daughters memere thinks she knows what she is talking about and the dr.’s and therapists have NO KNOWLEDGE, of anything!!!?? Her memere uses these things as “crutches” when it fits into her memeres wants and desires!!! She has NO UNDERSTANDING OF WHAT AUTISM SPECTRUM DISORDERS ARE!!! She dont even agree with the 1 medication my daughter needs to take daily! She will not remind her, she says it makes her worse but the dr, therapist, school and myself notice ALOT of differences!!! Her memere acts like she owns my daughter! Im her mother, my daughter has 1 mother, I do whats best for my kid. Between her father and her memere, they screw it all up and I have to get her “back on track.”

    • cathy, i’m so sorry that you have to fight on so many fronts. i can’t pretend to know what that’s like, but i can tell you that you are certainly not alone in that particular circumstance. i know a lot of people whose situation is unfortunately quite similar. so many people are not ready to face their own fears and insecurities, and it’s such a shame when it makes things so much more difficult for our children. i wish you strength and comfort as you continue to stand up for your child.

  71. Dear Jess:
    I came accross your blog on the Autism Speaks website it is beautifully written…My wonderful sister was diagnosed with Autism in a time when the mother was blamed for the disorder…I have forwarded your words on to her because I think it expresses so much that she must have been feeling and still faces.
    I am a single parent of three beautiful children and although none have ASD your words still hit on some of the feelings I have had since their father left a year ago- I think those feelings are universal to most mothers, the trying to be everything we can for our children and we all often put ourselves to the wayside and forget to take care of ourselves.
    I am also the Director of a daycare/preschool and work with families who have had to deal with these very issues I am going to print off this letter and give it and the link to your blog to some of the therapists, parents and teachers that I work with because I know that your words will touch them as much as they have touched me.
    Thank you
    Rae

    • Rae,

      Thank you for you words. I can only imagine what your mom went through so many years ago. Fighting wars on every front while being told by the medical establishment that the ‘blame’ falls squarely on you – it’s unfathomable to me.

      And thank you for passing the letter on to other parents as well. I’ve found a profound sense of relief in the knowledge that I’m not alone on this journey – no matter how isolating it may prove to be at times. I am grateful that my words may provide that comfort to others.

      Warmly,

      Jess

  72. Thank you. My son was just diagnosed and I needed to read this. I’m started reading it and started crying, but I know it must be tears of healing and forgiveness, because I believe you…I’m just not sure when I’ll get to that point where I can look back and feel like we’re okay.

    Thank you.

  73. Jess,
    Wow…How I wish someone had written me a letter like this 9 years ago! I am still building my village, have found that due to being a Military Family, my village stretches around the world. I have learned that sometimes its not “blood” that makes a family…as there are family members who just don’t “get it”, and some days that hurts the worst. It can be easy to ignore comments from strangers, but when the comments come from people who are family, they seem to cut deeper. Doing the best that I can as a Military wife to love all three of my children, and to show my two “Typical” kids that they are just as special and important as my son who just happens to be autistic, after all He is not broke, just wired differently. seeing the bond between my girls and they brother grow stronger is probably the biggest joy in my life, and I pray that it continues as they seem to be flying towards adulthood way to fast for me!

    Thank you for finding the words to say what I have been trying to say for so long!

    • Thank you and your husband so much for your service. My family and I are so grateful for your sacrifices to keep us safe!

      Please stay tuned – there’s a post coming this week in support of our military families!!

  74. Wow, this was just for me. Weirder, my profile saying under my pic is “arent we all really small?” I am just starting on the autism road w-a 14 yr old. nothing but obstacles so far but this letter really does help to read. Thank u to whomever wrote it, i wish i had someone like u in our lives!

  75. As I sit here with tears rolling down my cheeks as I read this, I am amazed at how someone took all my thoughts, fears, and feelings and put it into words.

    Thank you!

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  77. When my son,now 13 yrs old, was 1st diagnosed, it felt like all the blood and soul had escaped my body, but like in ur letter U learn & realize that God gave U this child for a reason, and it is our jobs as mothers to be there for our child as best we can. The end result; they love us unconditionally! :)

  78. I have just had a really bad day with my son who is a high functioning autistic child, but I am also a single mother so most everything is on my own. We live in a rural area so there isnt a lot of help for him in this are, but we are working on it. You letter has really hit home and I really appreciate all the help that I do get from the teachers and doctors. I just wanted to thank you for it. I really needed that extra boost

  79. Jess,
    Thank you so much for your healing words. I am going to print this whole entry, comments and all, share it with all of my mom-friends, and post it on my fridge for easy reference when my 2 1/2 yr old son has a “bad day.” He was just diagnosed in July, and I feel totally overwhelmed by that “immovable mountain.” I have come to find Autism Speaks to be my safety net…my soft place to fall at the end of the day. I am so glad I clicked on their link to your blog. I was so moved that I went on to read every single comment. I cherish you all…you wonderful strangers. Please keep telling your stories. They are keeping me going when I don’t feel like I can take another step down this road.

  80. The longer I am connected to this field, the more I realize how little therapists and teachers really know. I have learned far more from parents than any professor, book or workshop. When I became a parent was when I finally started to “get” it.

    Thank you so much for articulating what so many of us need to hear!

  81. I am the mom of a recently diagnosed son, but my journey began over a year ago when my son was not allowed to return to the childcare provided for a mom’s group meeting. I fought and struggled with fears and anger over the unjustified treatment of my “normal” little boy who was just going through a phase. Continuing on, the Sunday School was where I learned there may be more here than just a “normal phase” when a special ed teacher observed him and gave me a report of what she saw. I became very angry (and still am a little) with the church and the report. Even though I was still mad it was because of them I began to research and have my son seen and tested. Finally only a few months ago, right after my 3rd child was born, we did get a diagnosis. But, it wasn’t really “finally” it was really “dreadfully”. We are still in a sort of shock state and are still blaming our parenting and things we must’ve done wrong to cause this. We are also wondering why our son has to have a title over his head now and will it effect him having a normal life, ever?! How do we suddenly change our parenting techniques with him now and realize that he is not intentionally doing these things. I have never felt like a good mom in the first place and then to have this diagnosis and realize that maybe I could’ve prevented this makes me feel even worse. Yet, somehow I have to believe that God’s word is right and he would never give us more than we could handle, even though I don’t feel like I can handle this at all and get it anywhere near right. Too many feelings, too many things to learn and too much happening all at once. It is so meaningful, even though it may only make a small impact and I may not believe it yet, to have anyone say anything positive about me as a mom right now. I want so much to turn a switch and have my son become “nomal” again.

    Your letter moved me to tears too many times. My son is only ever going to be who he is, just like anybody’s son is. I just have to accept it and learn how to make one step at a time.

    • The ‘title over his head’ doesn’t in any way, shape, nor form change who he is. Instead, it gives you the tools to help understand him better and to help him navigate the world more easily.

      It also can serve to help HIM find a group of people out in the world that share many of the same challenges (and strengths!) as he grows up. Given the label, he will find, just as you did today, that he is not alone, nor is he to blame for who he is.

      Stay strong! You’ll get through it.

    • This was me two months ago…I was SO ANGRY at everyone who had a hand in my son’s diagnosis – I thought they were all overreacting to what I felt was “normal toddler behavior.” I blamed them for holding out on me (I had to learn about his pediatrician’s suspicions second hand from his OT 4 months after his 18 mo checkup). I blamed myself for his “developmental delay,” for letting him watch too much TV before he turned 2, for not engaging him enough each day when he was playing. Once he was diagnosed, I blamed them for not knowing how to tell me in a way that might have cut through my denial and made me get for him help sooner, and I blamed them for handing out autism diagnoses “like candy,” like they used to for ADHD. I even imagined that we might be able to keep his diagnosis between us and his service providers…not even telling our folks back home / his friends’ parents. After all, he might “grow out” of the diagnosis, or might have been misdiagnosed, and then he would be stuck with this label. Then I saw the First Signs ASD Video Library…(see http://www.firstsigns.org/)…and I began to doubt my righteous indignation. I questioned my instincts as a parent…where before I let him explore and was content to take his lead (I did not want to be a “pushy / overprotective” mom), now I was told that I had to provide much more structure and create “parent-led activities.” I began to read Dr. Sear’s Autism Book and Greenspan’s Engaging Autism, and decided that even if he was misdiagnosed (which I admit now is unlikely…even if I still see him as “high functioning”), we owed it to him to give him the best support we could find. I told myself that really I was grieving for what I initially perceived to be his future, but it actually turned out that I was grieving the loss of my dreams for him. I got to thinking…why?! Shouldn’t children be given the chance to live free of others’ expectations / their parent’s ideas for “success and happiness”? Why was I assuming he would never have a good life? Because it might not match my idea of what makes a life “good”? What if he turns out to be more than I ever expected of him…himself, on his own terms, in his own unique way? In a way, the diagnosis is actually liberating. I can’t believe I am saying that now, since only 2 months ago I was screaming into my pillow about “wanting my little boy back” and how they (those who “pushed us into this world”) were all “quacks” who were “taking away my ability to enjoy him growing up.” At each milestone, instead of just being happy, I had to wonder if it was “normal” for his age group, or if his cute behaviors (like his “joyful” way of running / his occasional shoulder shrugging) were really just part of the label. I get better each day that I get some distance from that horrible “D” day. I see him growing like a weed, exceeding all of their expectations, reaching milestones in spite of their warnings that he “might not ___.” I think we need to be patient with ourselves during this difficult time… and most of all, we need to show our little ones that we are ok with who they are. So now for the unsolicited advice…give yourself some time to grieve for your dreams for him before launching into the books and studying the treatment options…sort out your feelings, but don’t brood there forever. We are at the bottom of the “immovable mountain” – but we can’t stay there, we have to take care of ourselves and each other and find the strength to move forward, even if only in baby steps. Like Jess said, “our children deserve that example.” It helped me more just to get the Early Support folks in and start talking to them and to moms of other kids with Autism. Lean on the “club”…that’s where I have found my strength (as well as a reliable line on the best resources in my region). I have learned that not only can I not do this on my own, but I don’t want to – I want to advocate for my son and every other child out there who is genetically predisposed to be vulnerable to the myriad of toxins in our environment. I am steering my anger in a positive direction. My son still has his bad days, and on those days I have learned to take “mommy time outs.” People will know about his diagnosis, but he will never see me cry about it again. It is not a death sentence…it is a beginning of a new way of life…we are moms – we can adjust.

  82. Hi Jesse,
    My name is Nadiya and I am from Pakistan.My son is 17 this year and my story is not new.I have written a diary since i was a child and with ashaarib being ‘different’ I KEPT on writing for catharsis.He was 9 when he was diagnosed with autism/aspergers/PDD-NOS. before that is a story i can only keep in my diaries..your letter has suddenly kicked in the urge to express my thoughts out aloud..I wonder if I have the courage to blog my deepest thoughts and experiences.
    love and prayers for you and yours
    Nadiya

    • nadiya, i do hope that you will tell your story. i have long been convinced that while awareness is a global mission, it remains, first and foremost, a very personal one. it is through the telling of our stories that we humanize autism. that we make it real. that we create a world of understanding, compassion and tolerance for our children. i write about it a lot her, but this pretty well sums it up ..

      http://adiaryofamom.wordpress.com/2010/04/02/world-autism-awareness-day-2010/

      all the best to you and your son. if you start a blog, come back here with the link!

  83. Thankyou :( i feel so alone sometimes, and reading this made me think of all the people that i’ve meet in the last few months….”i’m not alone” “grab on to life with both hands and don’t let go” “lifes a rollercoaster!!! have fun” : )

  84. Wow. I’m blown away. Everything resonated. Did all of that really just come out of your fingertips?

    Thank you.

    I’m speechless, grateful and floored by your writing ability. You are doing what you were put on this earth to do, use your writing talent and wisdom to help others.

    Keep telling your story…

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  92. Wow! What an amazing piece. I am the aunt of an 8-year old nephew who has Autism. I know for a fact that this journey has been incredibly difficult for my brother and his wife. But I have seen so much love and patience from these 2 people. I have been there when my nephew has his therapies and that child never ceases to amaze me; he is such a light in this crazy misbegotten world. His happiness is infectious and I feel so incredibly blessed because he and I have this amazing bond. I am so lucky that he has let me into his life with love.

    I thank you Jess for your incredible piece, because it means so much and I know my brother and his wife always need to realize that they are not now, nor ever will be alone. So, thank you for that.

  93. Hi Jess,
    I am writing to request your permission to share “Welcome to the club” at the Pennsylvania Physical Therapy Association conference. I am a PT and the mom of wonderful son with Autism and I will be presenting the parent perspective during a seminar on Autism on 10/23 and 10/24 2010. This entry truly hits the nail on the head, and I want the audience to understand what the parents of the children they treat go through. Could you kindly respond to jimkerwalsh@aol.com? Thank you so much, and thank you for sharing your beautiful gift.

    Kerry Walsh

    • kerry,

      thanks so much for writing. i’m happy to share ‘welcome to the club’ with anyone that can benefit from it. and i LOVE that you want to use it in this way. all that i ask is that you attribute it back to the site and offer the link along with it.

      thanks!

      jess

  94. Hello Jess,
    I fortunately stumbled upon you blog and read your inspirational words. I am going to a special lunch in a few weeks for moms of children on the spectrum. I was thinking of creating cards for all of the moms attending. I would love to use a few excerpts from your “Open Letter to a Friend” but will only do this with your permission. And of course I will credit you.
    Please let me know if this is OK with you.

  95. Dear Jess,
    I am at a hair salon in NYC just waiting for the timer to ring, so I know the color is done. I brought my iPad so I don’t fall asleep from boredom. I have a beautiful girl named Kate. She was diagnosed with autism in Nov 2005. She is 7 years old. I am designing a website called Autism Storybook. Just for girls. I have been angry for a long time that girls are so underrepresented. I know that boys are diagnosed much more frequently but girls get left out. 1 out of 5 diagnosed with autism is a girl! Although Autism Speaks does a great job promoting autism awareness, it tends to show mostly mothers and sons. What about the girls? What about fathers? I decided I didn’t want to be angry anymore. I designed a website that allows family members to post a photo their girl, and share their story. I am going to print the photos (with permission of course) and add them to a banner I am creating for the next Autism Speaks Walk in NYC in June 2011. I stumbled across your website accidentally today. I am so glad I did. Your welcome to the club letter touched me in so many ways. Thank you for writing it. I am in process of writing Kate’s story for our website. Right now it reads like a medical history of everything she has been through. My child’s spirit and personality are somewhere lost behind the scenes, buried in all the other stuff I wrote about. How do we write about our kids bravery, challenges, determination, victories, charisma, abilities (Kate has perfect pitch and plays music by ear) and sense of humor?

    Just wanted to say thanks for inspiring me in a positive way.

    Annette Schroter

  96. Every day brings a new adventure. God please give us all the strength to continue living each adventure and learning as we go.

  97. BRILLIANT. Thank you SO MUCH for sharing my innermost feelings (x2 daughters!). Touched me more than you could ever know. Reposted on Facebook & see lots of my friends have as a result now, too.

    HUGS to you, Mama. SO PROUD OF YOU.

    Gwen from KS

  98. Tears are just flowing down, I mean you said it all, everything I have been feeling that I just could never find the right words to describe and you did, thank you so much!!!!!!!!!!!!!!!!

  99. wow.
    there are no words to describe how much that touched my heart.
    my 2 year old son has huge delays, physical problems and medical problems his life has been a roller coaster. some days i feel ok and other days it’s like crashing headlong into a wall or jumping off a cliff with no parachute.

    but it’s all true, the words of Jess speak volumes of what my heart can’t put into words.

    thank you Jess, whomever you are your words have blessed us.

  100. I just sent this to a friend. Before I did, I reread it. I read it while ago when we were going through the DX process. I read through most of your blog at that time…you gave me hope that things would get easier.

    I wanted you to know that they have. We have hope again. We have learned more how to parent our child – despite what the books say, despite what the community says, despite what friends and family say. I’ve learned more patience than I ever thought I’d need to have. I’ve learned to stop and reach into a childs world and try to piece together the puzzle. I’ve learned how to really care, to really love and to really understand. I’ve learned so much about parenting, about my child, and about me.

    It does get easier. Thank you for shining a light into the dark tunnel that stretched before me. You are a beacon in the darkness, witness that it does get easier.
    I read your posts and am reassured that even a mom who has come so far can still have up and down days with their child – but that overall, it gets easier. The ballet tutu, thank you for reassuring me that others have made parenting mistakes, and beat themselves up as much as I do. You are human, you aren’t perfect – that is what I need to know. I’m not alone. And that it does get easier.

    Thank you for sharing your journey – the highs and lows, and giving us all out here encouragement and hope.

    Thank you, Jess. Thank you.

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  102. Jess u just took my breath away. tears are just rolling down. i wish i had the words 2 tell what u sending this 2 me means. im not the type of person 2 put my feelings out for all 2 see but lately i cry if i see a child with a disablity weather in the super market or on tv. i never thought i would be here in this village as u say. i am so thankful for my little monkey but im sad for her 2. im sad for my other daughter 2, its hard on her. they both are my world and love them so much. just hoping ur right one day i will wake up and the cloak will be beside the bed. thank you so much for ur words. i am official ur biggest fan. keep writing for us in the village we need ur words. bless u please hear that bless u and thank u again.

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  104. Wow. You write so clearly and with such honesty…
    I have enjoyed reading your posts, and looking at your beautiful girls :)
    Keep on doing what you are doing, we all need to put our support out there for each other, we can change this world!

    I would love for you to have my blog up on your site if you would like…

    http://koautism.blogspot.com

    All my best,
    Kary

  105. It may not be a club I wanted to join, but thank you for making me feel like someone understands. I will re-read that often in the upcoming months. I don’t want to be here. I feel like I’m about to shatter into a million pieces with grief, but I have been his only voice up ’til now and I will always be behind him. I long for the part where I can breathe because every breath is crushing and painful. The tears come too quickly and take so much effort to stem. But I won’t fail him. I am his mother and I will do what I can to make the world right for him.

  106. This was by far the most amazing thing I have ever read! Tears are streaming as you know while going through this process every mother feels alone! You put into words what we feel, what we have not been able to do and express! I am completely amazed! Thank you!!!! Truly amazing and absolutely true!

    Anna

  107. What a powerful message… Thank you for your words of wisdom.. They are strength to the weak and almost hopeless.. (never hopeless with God) :0)

  108. Beautifully said Jess. I cried through the entire piece and it has been 6 years since my son was diagnosed with Asperger’s. He is 14 now and at the top of his class in high school. Day to day we may forget and the struggles are certainly fewer and further between, but we never know when that raw pain will resurface- unstoppable tears at a Homecoming football game when you realize what your child is missing out on for example. Every bit of what you wrote is so true and I hope it helps those just receiving the diagnosis to realize they are not alone. We are all a part of this club that no one asked to join.

  109. Thank you so much. That was beautiful. You said so many things I needed to hear — (and our diagnosis came three years ago.) God bless you.

  110. Unbelievably accurate and beautiful. Thank your sharing your gift to put this into words. Especially for the newly diagnosed moms but really for all of us. God bless.

  111. This was so moving for me even though I found out 8 months ago that our middle boy was on the autism spectrum. I had always suspected but could not seem to get anyone to agree to give us a referral to a specialist until he was almost 4, then it was a 9 month wait to see the developmental specialist. When I do look back, we are definitely nowhere neat the top of the mountain, but we sure are making progress. This is just what I needed to get the strenght to move from the resting place I have reached to catch my breath and move on further up that great mountain I need to climb, not just for my middle child on the spectrum but also for the other two. Thank you for reminding me, it may be a difficult road at times, but it is sooooo worth it and I can handle it.

  112. Jess, I have just read your post and I am sitting here with tears streaming down my face. You have put everything we are feeling so eloquently and so beautifully. I have just left my daughter after we have struggled for nearly 15 minutes to get my beautiful grandson into his car seat. He was diagnosed with Autism in November after a provisional diagnosis in April last year and no two days, weeks or months are the same. There are good days, not so good days and truly horrendous days. The part in your post about nuturing yourself is so important, it breaks my heart to see my daughter, as a single parent, struggle with this battle every day and I worry that she doesnt sleep enough, eat enough, have enough time for herself. I will show her this post as she is in a bad place today but I know it will get better. I have faith in her and faith in my grandson. Thank you for such wonderful insight.

  113. I read this thinking how can you know me so well. Thank you for putting words to the thoughts, pains, and joys of our journey.

  114. A friend shared this on FB with me and THANK you so much for this beautiful letter. I will read and reread this I know. We are in the midst of all the testing and evaluations for my daughter and its such a hard time. Just knowing there are many others out there who have been where I am right now makes things so much easier. Thank you again!

  115. Thank you! I am in Starbucks, embarrassing spilling tears on my table. You captured everything so well. Thank you thank you thank you.

    • oh, honey .. if i had a nickel for every tear i’ve spilled into my grande decaf skinny caramel lattes, i’d be a wealthy woman. ;)

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  117. Poignant and personal. Healing to my soul. I love my son just the way he is and I really didn’t know if I would ever figure out how to do that. I have survived my broken heart, all-consuming fear and an isolation I thought might have killed me. My village is growing and its diversity takes my breath away. Thank you for sharing.

  118. wow, its so wonderful…just as life is wonderful. recently ive been so sad and want to give up. i just felt so hurt that i want to end everything but every time i look at my kids eye it just bring me light of hope. my son is diagnosed with Autism spectrum Disorder i dont understand i don’t know if i will ever…somehow i kept it inside me i felt like im a bad mother. i felt like im a failure for not understanding it. im lost i dont know what to do

    • you will find your balance. it will come. it’s an evolution, not a light switch. but please hear me when i say, ‘it is NOT your fault. you are NOT a failure. you WILL find what he needs. please don’t give up. it will get better. i promise.

  119. I just linked into this post from a repost somewhere on Facebook (I honestly can’t recall which Autism-focused fan page posted it) and I am absolutely floored. Your words so perfectly captured the emotional maelstrom that accompanies an ASD diagnosis, and I’m sitting here at my desk, at work, crying… Raw, pure, beautiful emotion flow from your words and from my heart as a result of reading them.

    Thank you for writing this. Thank you for capturing what we all feel. Thank you thank you thank you.

  120. I am new to your blog but not new to Autism. My son was finally diagnosised when he was 11. He is now 15 and I am always amazed at what he has overcome. I have been lucky to find some allies in the schools after much fighting. I will always remember what a CST member told me. You are your child’s advocate. Never let anyone act like they know your child better than you.
    Thank you for your letter. It was exactly what I feel everyday. Some days are better than others and my cloak has been hanging in the closet for a long time. I always chant;’Always be your child’s #1 fan.’ It makes all the hard work seem so much easier.

  121. I found this on the FB Autism Speaks site. And cried as I read it. I can’t even begin to say how I feel…but then that’s what this blog post is about. I love my son and appreciate reading things like this. Thank you.

  122. This was a truly wonderful letter/article. So genuine and honest and struck me right thru the heart because it rings so true. Its amazing advice and so touching. My son is almost 4. He was diagnosed in September, his official diagnosis will be coming in a few months. 90% of the time its a major struggle raising him but he is the sweetest most lovable little boy & I wouldn’t trade him for the world! He IS our world.

  123. Thank you. My 2 and a half year old daughter was diagnosed on 1/11/11. I couldn’t read the entire post today (much like the unread books on my night stand that I can’t face right now). But I know the day will come that I will not only be able to make it through the post and read the books but also offer support to others. I am very emotionaly spent these days and overwhelemed but this blog has been very helpful and encouraging. Thank you.

  124. This was great, this wraps up everything in one and for the past month it has been the crazy winding road, but this just gave me that pat on the back, the extra boost of confidence, and just a good feeling. Thanks for making me feel good.

  125. I’ve read a few posts from your blog and always thought you were a fantastic writer. This is just… WOW… So moving and so real.

    My daughter is 4 and was diagnosed just last year, but was showing signs well before then. I know that my daughter has changed me and how I perceive things. I think she is truly amazing!

  126. Thank you for this beautiful letter. You have reached the depths of many hearts of special needs parents. Very inspiring.

  127. Thank you for a well-written letter that we ALL understand. My son was diagnosed 15 years ago, and everything you say is true. That’s why my favorite line here is, “Hell, I am you.” Yes, you are!

  128. I appreciate this entry as I have experienced it all with my now nine-year-old daughter. I have read it over and over. I’m still working on my network as this can be a very isolating situation. Thank you for saying so clearly the emotions that I have such a hard time expressing.

  129. Hi Jess. I’m a mom-of-two from the Philippines. I have been a lurker in your blog since I chanced upon it through Autism Speaks a few months ago. I thank you from the bottom of my heart for your insights. You blessed me with your words.

  130. A friend with an autistic child shared this on FB. I read it because I care about her and her family. But this letter speaks to so many more struggles than just autism. This is a hopeful letter to any parent with a child that’s going through a trial . . . autism, bullying, abuse, sickness, etc. Thank you for writing a letter that puts words to feelings that have a hard time coming to the surface. And thank you for reminding us that we will come through the other side of the trial! There might be another trial right after this one, but what we’re feeling today will not last. We just need to hang on, trust God, lean on friends, and push through. Thank you.

  131. Thanks for takeing the time to let us moms with a child or children with special needs that there is someone that knows how we feel. I cryed through the whole thing. We are from a small town and i have not had much luck finding help for my little girl but i will never give up on her. She is six and is way behind and meaner than all get out, but she is my little girl and i love her as much as i love my other daughter. I have my days that she makes me want to rip my hair out and days that she rips my heart out. I have known from the begining that i was not the only mother to have gone through this but sometimes i feel all alone with a child who has AS,ADHD and PDD. Thanks again for the pep talk Lord knows i needed it. Teresa Humphries

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  135. Thank you so much for this. This is the third “club” I’ve inadvertently joined. The first was the infertility club, the next was the twins club, and now this.

    My eldest son was diagnosed with Autism four weeks ago and since then I’ve been searching for what has turned out to be this post. Thank you for the encouragement – I look forward to reading your archives. I suspect I’ll start my own blog for my own sort of therapy. (Blogging got me through infertility treatments!) I’m pretty sure that if I can survive parenting a kid on the spectrum and infant twins, I’ll earn a medal or something. :)

    • Kari, this blog has helped me tremendously, and the one thing I have to pass along – it gets easier. I’m also a member of the infertility group and the twins group (LOL). Is it one of your twins with the dx? For me, its my eldest twin (the other is NT). My boys are 5 now, and the road is astonishingly easier than it was pre-dx – night and day now that we receive services through the school. The infertility struggles still linger with doubt and guilt on this new road – unfounded, but still, the feelings persist.

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  137. Hi! My son joshua is 6 years old and was diagnosed with PDD when he was 13/14 months old. It has been VERY hard emotionally as well as physically for me. Thank u for ur uplifting and comforting words of support. It was very emotional for me reading everthing u wrote. I am going through a rough time now and need advice on what steps I should take to fix this problem.

    My son’s teacher has said some very INAPPROPRIATE comments to my son last week and I met with the assistant principal as well as the principal BUT we got nowhere. The assistant principal was very defensive towards the whole issue and disregarding my concerns as a parent. She told me that the teacher is a passionate and compassionate teacher which I totally disagree with that comment! And to question a teachers passion is in her opinion ABUSIVE. I feel belittled and humiliated as a parent who is doing nothing but protecting my son and for the assistant principal as well as the principal to defend this teacher without first investigating is totally ludacris to me. What should I do? Please give me some advice. This teacher lacks patience and is NOT a nurturing teacher and that worries me because my son as well as his peers need to be treated with patience and compassion. This teacher is not equipped to work with autistic children because there have been other incidents regarding this teachers conduct. What should I do? God Bless.

    • christine, every school district is different, but if you feel that you’re not being heard by the people that you’ve spoken with, i’d either seek out another alternative (a guidance counselor or social worker might be more receptive) or follow the chain of command up the line as is appropriate in your district. it’s never easy, but i’m sorry that you’re struggling.

  138. I read this and I smiled. So beautifully written. My son is going on 19 now and indeed, life DOES go on. Our choice is whether we want to live life or get stuck in the sadness of the challenges. I am an infinitely better person for having Sam in my life. Bless you and yours on your journey Jess.

  139. I am new. I just found your site today and I am reading this and sobbing my eyes out. I am so scared of the future. I am so scared that I am not doing the right things… and that I am failing my son……. thank you for this post. sincerely, thank you.

  140. I am new to your site. I have a soon to be 14 yr old son with asperger’s and a 2 1/2 yr old with autism… Thank you. Thank you for everything that I have read about on this site. Thank you for making me cry when I read this letter, I think I actually needed it. Its been a rough week this week, but it helps to see how far we have come. We are not standing there in fear anymore. My older guy is doing wonderfully and my little guy is sooo very smart and tries so hard and has come so far. We all have doubts about doing the right thing, the best thing for our kids. We are their only advocate and I only wish I could help in more ways than we can. Each day is a new day, a day to try again, a day for hope to spring, a day of growth, a day to learn. Because I will never stop trying, for my kids and your kids and all the children of the future. THANK YOU!!!

  141. This was beautifully written and very moving. I can tell that you write from your heart. From a place that is real. Thank you. For all the parents with children that have autism, and people with autism themselves, I say thank you.

  142. I really needed to see this post today. Thank you for posting it on Facebook.

    My 25 month old son was diagnosed a week and a half ago with PDD-NOS. This describes how I feel exactly. It’s overwhelming. I feel like I’ve thrown myself into getting therapy set up so much so that I wouldn’t have to really process what this means for me and my family.

    It helps to know I’m not alone. Thank you.

  143. I needed this today. Thank you. I have been following you on Facebook for less than a week, and everytime I read your posts it opens up the wells of emotion I keep trying to stuff. My 7 year old is still in the process of diagnoses because his father didn’t want to admit anything was wrong. Now that I am fighting this battle alone, we are making progress…but it is slow and painful…but worth it when the little battles will win the war.

    Thank you again

  144. My brother (Ben B.) is a friend of yours and passed this along to me today to read…today as I sit in a hospital with my husband and our 18 month old daughter who was diagnosed on Saturday with Cancer. Today she just survived major surgery and avoided paralysis. Survived, and has legs to use. Big day for us today. Highlight of my day…getting the good news from the surgeon, seeing Rebecca smile. Next favorite moment, reading your lovely letter. I am in awe of you for writing it and of my brother for having the compassion and understanding enough to think to send it along. All the best to you and your family,
    The Standley’s

  145. I desperately needed your writing. Jess. As I desperately need your friendship. Please find me on facebook. Janie Schofield. Thank you. I feel much better already.

    • Jane,

      I’m so glad that the letter was helpful. I’d love to see you on FB – just search for ‘diary of a mom’ under ‘pages’ and then hit ‘like’ to join in the conversation. Or, click on the facebook icon up there on the right of the post up near the very top of the page. Hope to see you there!

      Jess

  146. Thank you, thank you for writing this, thank you for understanding, thank you for putting into words what I just can’t seem to. I feel like we are a little drop of oil in a world of water, always floating on the surface, never fully blending. This life is scary and alienating and it’s easy to forget there are others out there who are feeling what I feel, doing what I do. I read your post and cried, tears of understanding, tears of hope, tears of sadness…. Thank you for that, for reminding me that I am not alone.

  147. That was everything I felt without having to actually say it! Thank you for that! My son is 2 and has been diagnosed autistic and I felt every morning when I woke up, that I was still in a bad dream. But time does heal! It has been almost 6 months now and I have already seen some milestones that I am so blessed to have seen. I feel like I am not alone anymore, and it can get better, he will get better. Thank you for all of that! Miracles do happen when we least expect it, my cousin sent me your blog. She is a good friend of yours. She follows your blog everyday and recommended I do the same. I will def. follow and listen. There is so much more I need to learn and pass on. I am so glad you are doing this. You really are touching so many hearts and reaching out to so many families! Thank you again!

  148. I know you didn’t write this letter to me directly, but I feel like you did. Thank you for the understanding and support that your letter gives to all parents. I am glad I found your blog :)

  149. I too have been there…the road is hard, but the trajectory is upward, always upward. Thanks for the reminders :)

  150. This made me burst into tears. We’ve had an up-and-down day, and Mama’s nerves are frazzled!

    My 3 1/2-year-old son was diagnosed with high-functioning autism in November, and though he’s made a lot of progress, there’s still a long way to go. And though I’ve settled into my new role as A Parent of an Autistic Child (trademark pending, don’t you know) and am finding my way, I guess there are still some raw places that haven’t yet healed. I have a dearth of nearby friends of any kind, let alone any offline friends who are also parents to autistic children. I find myself very, very grateful for the internet.

  151. My son has just been diagnosed. I “knew” in my heart though. Apparently he’s “mild” but that doesnt stop the stares and “tsks” from other mums in social situations :(
    This describes exactly how im feeling at this moment in time.
    Thankyou! :)
    Cara

  152. Wow. Thank you so much for this. My son was diagnosed with Aspergers on May 4th. It’s been a roller coaster of Epic proportion. I needed to read this so badly. Thank you for saying writing the stuff I so needed to read. It’s nice to know that eventually we will get through this. I’m a single mom with my 9 year old son (ADHD, Depression and Aspergers) and a 6 year old little girl. Things are rough and sometimes I feel like no matter how much I do it’s never enough.

  153. Thank you so much for your beautiful words. You spoke to me personally and I don’t even know you.

  154. I am done drying my tears now. I am a single mother of two special needs children. I do it all on my own. I felt like you were in my head. That is my story. Unfortunately we are still in the dark days. You gave me hope that one day I will stand on the mountain and take a look around. Thank you for letting me know I’m not alone. <3

  155. ‎”But you will ultimately remember that while they are the experts in science, you are the expert in your child.”

  156. Jess- I am a special educator as well as a parent of a child who was diadnosed with ADHD, Tourette’s and OCD at age 6. To hear your voice of comfort and wisdom for all of these loving parents is nothing short of a miracle. When Matt was little, I often thought that I would pay cash to find one person who understood my reality. Now, he is 20, Honor Society, about to graduate college and I realize whew……that I can breathe, We have come far and we have walked through much pain as well as much growth. Thank you for comforting those new parents like myseld who cried endless tears at the “Road to Holland” th
    at was not exactly as planned. Looking back today, I would not have changed one thing. Except maybe my own self-doubt.

  157. You have helped my heart and brought me back. I have cried so much reading your posts and haven’t felt this good in a long time. I’m so very glad to have found this.

  158. My 18 month old son was evaluated today and we are entering an early intervention program. I already had my suspicions but it was still hard to hear it finally confirmed. My husband and my mom were great and encouraging but I really needed someone to tell me it’s okay that I can’t stop crying and I’m allowed to fall apart for just a little while. Thank you.

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  160. Wow! An amazing post that I really needed today as we faced enrollment day. To watch my boy hide behind me like a toddler, whispering answers or just not responding to the teachers at all, my heart hurt. I had to face that this child who just yesterday was running around with friends in their yard building and playing, talking like a magpie was now at step one again. I was standing there reliving the horror of last year’s struggles and desperately trying to catch my breath. He asked me to hold his hand as we left, he needed security, my little independent, brilliant boy who normally wipes away kisses and says he’s too big to hold hands needed me. My heart swelled with happiness and broke with sorrow, I hate the regression. I’ve worried all day, torturing myself with different future scenerios and then I turned on the computer and there you were, waiting with a message to ground me back to reality and hold my hand so that I could get my head on straight. Thank you. That’s all I can say…Thank you.

  161. Every time I read this, and I’ve lost count of how many times I’ve read it, I have tears streaming down my face. So much truth in this…and sadly, almost 2 years later I still put on the cloak sometimes, but Thank God it is getting less and less frequent.

  162. My family and I are new members of the club. Your blog is just wonderful. I want to say thank you for having the courage to share, and for taking time out of your super busy life to provide your very special brand of hope and comfort. God bless you and your lovely family!

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  164. You wrote this post over two years ago and it still resonates, no matter what the special need. There is nothing like hearing from another parent, “I get it. I’ve been there too…” It heals more than anything any therapist could ever do. Thank you for being so honest.

    • dianne, not sure what you’re trying to join. to ‘join’ the facebook page, just hit the ‘like’ button. to subscribe to the blog, just hit the subscribe button and then give your e-mail address. thanks!

  165. I cried & cried reading this…. I felt like FINALLY, FINALLY I have been accepted, FINALLY,… I am no longer isolated … someone else knows my fear, my hopes, my heart! To Jess , I don’t know you but Thank You for letting me know it will be okay… and that’s all I have ever wanted… just for things to be ok!

  166. Thank you for writing this. I started following you in February when I finally accepted my son’s diagnosis. I always knew he was a little different, but I couldn’t believe my beautiful little blue eyed boy was autistic. I broke down at work the day I realized. I cried a week straight. In all of my research, I found your page. Thank you so much for making me feel like I wasn’t alone in this. I am a single parent raising a sweet, smart little boy on the spectrum. I am an only child and an introvert (what I thought explained my son’s differences too). My mom passed 8 years ago and my dad a month after the diagnosis. But reading your blog, I knew that kindred spirits were out there going through this too. Thank you so much.

  167. I love this post. I recently started a blog for parents that have children with special needs and have a “parents corner” that includes that “Welcome to Holland” poem. Its an inspirational category in my blog. I searched your site trying to find a “contact me” button but never found it. Do you guest blog? I read your copyright information and wanted to know if I could use this post or is it best to just provide a link?

    • Robert, while I typically prefer to just link, this post has been used all over the place without permission anyway, so i almost feel like saying ‘no’ would be punishing those who ask. ;) and truthfully, it’s far more important to me that the message be heard than that people come here to hear it. so as long as you attribute it to jess at diary of a mom and link back to the original, you have my permission to use it. thank you for asking.

  168. And what did you think of my blog? I love parents perspectives because the site is intended to be for them. Is there anything that you think is important that should be there and isn’t right now?
    Thanks again for allowing me to use your story.

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  170. My son (who just turned 3 this month) was diagnosed last month and the weight has been crushing. A friend sent me here, to read and it is amazing to me …it seems as if you took that straight from my head. Everything I am thinking and feeling. Thank you. I look forward to following your blog.

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  172. I been a member of this special sisterhood for 23 years now. I have walked the walked and met some of strongest loving sisters in the world. Many times I could not have made it without you. Thank you thank you.

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  174. Dear Jess, This is beautiful. I am an aspie mom putting together a 3 day autism conference for military families, and I’d like to share this on the first day. A good friend passed this on to me when I first got the diagnosis this May 2011, and it still speaks loudly to me. I’ll have someone read it who can get through the whole thing without blubbering (in other words, not me.) Please contact me through facebook if this is ok. I’m also on Twitter, @aspielighthouse. Thanks!

  175. Jess: From one club member to another, this post is a fantastic piece of writing! It’s right on target! My wife and I have an 18 year old son (nearly 19) who has autism and a seizure disorder. We’ve been a lot of the places you spoke of in your post. I will refer others to this for inspiration. Thank you so much for putting your (and your fellow club members) feelings into words! —George

  176. Dear Jess, I have found a reader. And by the way, it takes about six minutes to read this post out loud if you don’t stop for blubber breaks. It took me about 3 days to get all the way through it the first time. Catharsis is a beautiful thing. <3 Fran

  177. Thank you! You hit the nail on the head! I am passing this along and printing out a copy to return to it when I forget. Thank you for sharing!

  178. Thank u very much that is just what i needed to read,it made me cry and realize that im not the only one in this world feeling this way,my son is 5 and is Autistic he was diagnosed when he was 3yrs. it was very hard for me and still is cause i also hve a 13yr.old and a 3yr.old that aswell need me and my attention but in reading i do realize that everything will be okay…thank u very much for sharing

  179. Thank you so much! i cried the whole way through reading this. It’s been about 4 years since my youngest daughter was diagnosed with autism and just 2 years since my other daughter was diagnosed with Asperger’s (we’ve know she had ADHD for about 5 years). Most of the time i still feel like no one understands and we are all alone but then i read something like this and if feels a little better knowing that someone out there understands. We still haven’t really found our “village”, my husband and i both have a hard time opening up to people and are probably somewhere on the spectrum ourselves. But reading this makes it easier to think that someday we’ll find someone in our day to day lives that will get it and get US! Thank you, thank you, THANK YOU! If you ever actually read this please ask the nearest member of your “village” to give you a hug for me!

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  181. I love your letter……I started crying one minute into my reading.

    Some days I feel as though I’m suffocating and I just want to run away. My youngest daughter – third child – has a Cognitive Impairment and the first born daughter is fine…(still don’t like the boyfriend). I can’t tell you how many times I’ve blamed myself! I use to pray that one day my son – middle child -would wake up and not have ASD. I just wanted to see him run like the other boys his age; I wanted to have to yell at him to get off the computer, get out the house, come home, do his homework, do chores period!!, but just do all the things that my parents yelled at my brothers to do, or not do.

    Then I kind of woke up and realized that it’s not going to be that way for him. He is who he is and I have to adjust and learn other ways to reach & teach him. He was originally diagnosed as EMI when he was three. It wasn’t until he was 14 that retesting revealed that the ASD umbrella had widen and included him. Now at 18 (Dec 4th) he’s still one of my “favorite works in progress.” My son loves Pirates of the Caribbean ships and I will always be his first-mate.

    Thank you for writing this posting. I honestly felt that no one REALLY knew what was weighing me down. Yes, I have neglected myself, I could lose a pound or two; I’ve let my shoulders slump a bit; the house isn’t perfect; I could use a mini make-over; but I know I need to stop with the ‘pity party’ I attend on a weekly basis. I need to keep me healthy, because NO ONE, and I mean NO ONE will take care of my son and daughter the way I will.

    Thank you again. Printing and posting in my room and work space. I hope I can find my way back to your postings….not really computer savvy.

  182. THIS IS ABSOLUTELY THE BEST THING I HAVE READ IN A LONG TIME!!! by the and i was teary eyed!! and its also going in my Notes, with all acknowledgements going to you, of course!! THANK YOU so much for writing this!! Please keep up the awesome work!!! :)

  183. Inspirational – there is no other way to describe such a beautiful piece of writing. With tears in my eyes I praise you and completely understand!

  184. Wow. I haven’t been in the ASD community, but have been walking alone for 9 years…of course minus the amazing village that God allowed to be created for us. Seeing through fresh eyes exactly what we went through made me cry. We’ve been blessed with amazing progress for our little girl…practically undetectable AS now. But the first years were soooo tough. I will be passing this along to everybody I know who is newly diagnosed. Beautiful. Thank you.

  185. Jess, My son, Joseph, turned 19 yesterday, and was diagnosed as profoundly autistic when he was just 20 months old. He was the youngest child diagnosed with this in the state of Washington at that time. How I could’ve used those words then! What I’ve been through, and continue to go through, is not unique, although I felt very alone. We didn’t have internet support then. Thank you for reaching out to parents. Whether their kids are newly diagnosed or have lived with this for years, your words will have a strong impact. Dealing with an adult child with autism lends itself to a whole new set of challenges. It seems each stage of his life comes with its own hurdles. This stage is no different. Glad to know I’m not alone, although I wish it was something none of us had to bear.

  186. I can’t tell you how many times I’ve read this post over the past few years. I turn to it often. But recently I passed it on to a very dear friend. Her 11 year old son has been battling cancer for the last 7 years. (this is his third relapse). It is amazing how your words transcend so much. Everything I wanted to tell her (after a few drawn out health dramas with my own daughter) – everything was written right here. I don’t know how to thank you for that. The idea that some day she could leave that cloak behind- that her baby will be ok. Your words are amazing. Thank you. From the very bottom of my heart. Thank you.

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  188. Man this brought back alot for me also. Like others have also said every bit of it is also true. Thank you so much for sharing this.

  189. Jess, I stumbled here through FB just today & it linked me to this blog entry. I’m not sure why it jumps to May 2009, but I needed to read May 2009….as I’m a mom to fairly newly diagnosed twin boys. I’ve linked this on my FB status & asked everyone to read it, as it is as if you’ve read my heart & soul. Thank you. You so eloquently put into words what I have been feeling. And, for that, I thank you. I’ve read and re-read this post b/c it sucks to know someone is a part of this crazy world but also it’s comforting to know I’m not alone. Thank you and God Bless! -your newest reader, Autumn

  190. As I sit here with tears in my eyes at my desk at work ~ all that I could say is a whole-hearted thank you……. no words can express

  191. Thank you. My Matthew will be four on April Fool’s Day. We’ve faced a host of medical issues since he was born. God has seen us through them, healing or stabilizing until we were able to feel confident that his heart conditions (and other, less life threatening) were under control. Then we noticed that Matt seemed different from our other three, wasn’t hitting milestones; tried to ignore it, blamed it on the medical issues, hospital times, living in denial. His PDD-NOS diagnosis came through last Tuesday, the day before a wonderful member of this club got up in Bible Study and talked about her beautiful daughter and the journey her family has walked. She sent me a link to your blog, this post.. I am still sitting at the bottom of the mountain, angry, crying. I wanted more time enjoying the “healthy” little boy. Time to put on my work boots, first IEP meeting with the diagnosis is today.

  192. I have read for a long time. You could have written this about me, about 12 months ago. I cried while reading this, our first ARD/IEP meeting was yesterday, and all of this is so new. Ava is 3, I sometimes feel so lost. Thank you for your sweet words. Your raw/real words.

  193. I would love to see you add an image to this post so it could be shared on Pinterest. There are several of a newbies that pin new ideas and stories and quotes to our Boards and this is one of the most beautiful things I have ever read. I want to share it with my village :)

  194. you hit the nail on the head!! my son has just turned 1. when he was 3 days old our world fell apart when we were told he may have down syndrome. i wasn’t so much worried about him but how the world would treat him and how i would cope. i have had chronic fatigue syndrome and knew having a “normal” child would be hard!! after drug overdoses, extreme jaundice, 8 urinary tract infections, other infection, virus, open heart surgery and 8 hours of rocking him to sleep nearly every day for a year. every word you wrote spoke to me!!

    i love my perfect little man and somehow we find the strength together to get through whatever we need to!! its his smile that gets us there!!

  195. I started reading your blog this morning/yesterday, so D-Day was my first blog that I read of yours & I LOVED it! It rang so true with me & said all the positive things that I believe about d-day… how it didn’t change my daughter, it changed my mindset.
    I would never have found this “welcome to the club” in the midst of all your blogs, so THANKYOU to all the people who encouraged you to re-blog this one, & THANKYOU to YOU for writing it. Whereas d-day sad all the things I feel on a strong day, this is more the days/times I question myself – & yes, I have unread books in my room that I have bought/borrowed etc LOL!

    It is truly the most emotive, supportive & resonant letter that I have ever read! It sums up almost all of the feelings I have had on days when I doubt my strength, ability & knowledge to support my daughter. It also reassured me by saying all the things I needed to hear from a person further down the journey than I am to know that I too will make it!

    I want to tell you I have started my own blog yesterday after being inspired by you & others… I want to share my family’s journey too. If I can touch even 1 person (which I did today) with my writing, that is a blessing… otherwise, sometimes it will just be for me so that I can get the thoughts out of my head & have a record of them in future years to look back on & read with more perspective & wisdom/experience. Please look me up… i’d be honoured for you to share my journey as you are allowing me to share yours <3

  196. Reblogged this on Everything Under the Sun and commented:
    I love reading Jess’s posts at “a diary of a Mom” and this one particulary touched me. I wish I would have seen this a year ago when I was still processing how I felt about my son’s diagnosis of Autism.

  197. Thank you for this letter. My daughter was diagnosed in February and we are still in the struggling stage–struggling for strength, struggling to find the help she needs, struggling to come to grips with the loss of the life we thought she would have. My faith is being tested but your letter gives me hope that we will make it through this to the next stage.

  198. Jess,

    I’m sure you hear this a lot because you are, quite frankly, amazing…but you changed my life with your words. When we found out recently that we were headed toward a diagnosis for our son, I Googled like crazy. This post was one of the first things I stumbled upon. I printed it out, read it often, and it has inspired me to start my own blog as a way of expressing the many things I’m feeling about our journey. You are a gift to this community, and I just wanted to thank you from the bottom of my heart for giving me an outlet for my thoughts, fears, pain, hopes, dreams, and everything in between. God bless you.

  199. As tears stream down my face, I feel as though a weight has been lifted! You are amazing, this is amazing, and you are so so right!

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  201. I’ve been revisiting my invisible cloak this week…this was just what I needed. Thank you! Thank you for what you do. Thank you for being a constant reminder that every thing is going to be okay.

  202. Pingback: “D Day” A year in retrospect | HighFunctioningMomism

  203. Thank you for this post. I have only come into knowing about “Diary” a few weeks ago. I have been feeling very sad lately, overwhelmed, and doubting myself in the huge choices I am faced with. My plate is full and my tank is empty, not a good combination. Thank you for being there. Thank you for reminding me, I am strong, I carry on…everyday for the past 5 years, 5 years since I came into this club. I am not perfect, but I do know my 2 boys the best, I am their best advocate. I beat myself up because I cried today when I was really, mad. I showed my emotion to someone who has none about my child. I am no longer beating myself up for that, because I read this and I know that there is always going to be emotion in “my voice”- it’s who I am- it’s the only voice I have. Thanks for reminding me…it’s OK.

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  205. My 3 year old son was diagnosed not even two months ago… and I found your blog within days of his diagnosis. I have come back to this post every single time I feel like I can’t breathe because I so desperately need hope. I feel like I’m lost in grief and trying to claw my way out of a hole. I do have faith that maybe I will get there one day, but lately I just feel sad. Wallow, Headaches, Nosebleeds, Hair falling out. Tired. Sleepless nights. Shaking hands. Stomachaches. Worry. Constant worry. Constant phone calls to doctors/specialists/therapists/facilities/school districts/ad nauseaum. All the while trying to care for my newborn daughter as well and realizing that even though everyone thinks I have it together, I am a wreck. Even though I have a wonderful helpful husband, I have never felt so alone even though I know I’m not.

    Your words give me hope that maybe tomorrow I will wake up and feel these things a little less, and eventually, maybe I won’t at all. Thank you.

  206. A friend recently found this for me. Thank you for writing this. My son is fourteen and was diagnosed with Asperger’s Syndrome at age 7. I felt so much of what you wrote about when he was first diagnosed. I completely relate to what you refer to as the weight of the cloak. I overcame all of it over time and then found many times when I was feeling like I did in the beginning. This is definitely a roller coaster ride. Although there have been days (I admit) that I have wished (maybe wondered) what life would be like without autism, I would never change the way things are. My son is an amazing, unique and special person and I can’t imagine him any other way. As a fourteen year old, our new challenge is dealing with the spectrum disorder and puberty. FUN! I know we will get through but I am very glad I found this site. Thank you again for your beautiful words of wisdom!

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  208. I stumbled on this through a friend on FB. it took me to this post….I am choking tears back as I type this. My daughter is 3 and recently diagnosed with ASD. I also have an 8 month old son that so far seems “typical”. To me the word typical is now a clinical term used a lot. I thought my daughter was “typical” until someone told me otherwise. It doesn’t change her, it changed me and my husband in some ways. This post puts a lot of my thoughts and feelings into words that I have not been able to do. I do have lots of guilt that I am trying to wave off. I am a recent SAHM and I feel like I am going to lose my mind at times. I feel crazy carting my child to doctors, therapy sessions for speech, OT, ABA….you name it we do it! I have realized that through this blog that I am not alone and someone does understand! Thank you!!!!

  209. I came across your Facebook page a few months ago through a friend of mine. I enjoyed seeing your updates on your kids, and seeing how beautiful your entire family is. I have always suspected something was “different” about my son from the time he was 2. I went to his pediatricians, 2 year well child check, and expressed my concerns with the doctor. He basically told me I was crazy and that there was nothing wrong with my son. I accepted this. As the years progressed, the things my son did, did not go away. They progressed, and other things came about. Finally, when my daughter was born in May of this year, I found us a new doctor. At my sons 4 year check up, I expressed my concerns with the new doctor. He believed that it was enough to have my son get evaluated. We are now playing the waiting game. We received the approved referral from the insurance company, and now are on the waiting list to be seen by the doctor. It could be months. As I read this blog, over and over again, I know that I am not alone. And that I will not be alone in the years to come. It can be difficult at times, especially because we do not have an official diagnosis, and I do not have anyone else to personally relate to.

    Your blog has truly been an inspiration to me. When I read this particular post, I cry, every time. I know it will get better. I know things will get easier. I know all of this, because of you. Thank you thank you thank you, for everything.

  210. Thank you. From the bottom of my heart thank you. Yesterday was 20 month old daughters D day. And I NEEDED to read exactly those words at exactly that time. It’s something when that last bit of hope for a miracle is extinguished. That hope that just maybe the doctors will change their minds, and will just say that you were being a “crazy mom”. It’s something to reevaluate your life while staring into the toilet waiting on the months of worry to leave your body. It’s the morning after the D day and your words are the ones that are ringing in my ear, not the doctors. Thank you.

    • You may feel like the window closed on one miracle, but I promise … As you make your way down the road with your little girl, you will see more of them than you could ever imagine.

      Hugs.

      Jess

      • First @mom2map. Time will help so much how you feel. My son started receiving ABA therapy at 20 months and was formally diagnosed at 25 months. Even though I knew what the neurologist was going to say, after the formality I felt like my heart was shattered. I couldn’t breathe for weeks. 7 months later, I don’t feel that way at all. And you could not have convinced me, in the early days of my grief, that I would ultimately thrive along side my son. If I had known of this post back then I would have read it over and over again. I read it now and nod my head the whole way through. Hang on. You will make it :)

        @Jess I just found this post via Autism Speaks. This is truly beautiful. I relate to so much of what you wrote here and my sincere thanks to you for putting it out there.

      • First @mom2map. Time will help so much how you feel. My son started receiving ABA therapy at 20 months and was formally diagnosed at 25 months. Even though I knew what the neurologist was going to say, after the formality I felt like my heart was shattered. I couldn’t breathe for weeks. 7 months later, I don’t feel that way at all. And you could not have convinced me, in the early days of my grief, that I would ultimately thrive along side my son. If I had known of this post back then I would have read it over and over again. I read it now and nod my head the whole way through. Hang on. You will make it

        @Jess I just found this post via Autism Speaks. This is truly beautiful. I relate to so much of what you wrote here and my sincere thanks to you for putting it out there.

  211. Jess, this literally spoke to me in ways I can’t even explain. My daughter was born prematurely, has severe GERD, FTT, milk/soy protein allergy, a g-tube and a rare genetic disease called Osteogenesis Imperfecta. (OI). The road we have traveled is very much like a wool coat.

    Our blog is at http://www.gupiscollateraldamage.blogspot.com – Feel free to read it when/if you ever have time. I have added your blog to the list of those that I will now follow.

    Thank you. Your words are more like strength than a journal.

  212. I have a five year old son with autism and was seeking some advice. Do you mind? I follow you on FB and really respect you as a mom. My questions (for now) are 1. Do you force Brooke to participate in extracurricular activities? I’ve asked my son if he wants to play a sport or take a class but he says no, he just wants to stay at home and 2. Do you have expectations that Brooke socialize with the family at home? My son would let him spend all day in his room watching Olivia and playing with Legos if I let him. Should I let him?

    • At five I wouldn’t be awfully concerned about ‘extra curriculars’. Our kids have so much on their plates w school and therapy and just the energy that it takes to navigate the world.

      As far as socializing at home, we don’t ‘force’ much – but we do socialize. We go to her. We play in the ways that are comfortable to *her* – which might be very different from what *we* tend to think socializing is *supposed* to look like. We let her lead.

      When she was younger, we didn’t assume that because she was walking away from us she necessarily wanted to be alone. We learned early on that she might be walking away because the setting was overwhelming or uncomfortable. So we gently followed her. Joined in her activities if she was comfortable with us doing so. We sat on the floor. We lined up Dora dolls. Whatever.

      So I guess the answer is that we didn’t force her to socialize, but we did force ourselves to change our definitions of and expectations of – what socializing means.

      I hope that helps. If you have any other questions, please don’t hesitate to visit the Community Support Page. That way you’ll get a broader perspective (including the autistic one!) rather than just mine. ;)

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  214. I want to believe this so much. It’s so hard. I just found out. I have been parenting so wrong for over 4 years. How could I have been so clueless.

    • I know. I really, really know. So many of us have been exactly where you are. Please do not let the guilt consume you. You didn’t know. Now you do. Now you have the keys to the toolbox.

      Be gentle with yourself.

      Hugs

      • Today is our 1yr anniversary of d-day. To look back at what I felt like 1yr ago today as to how I feel today is like night day. A year ago I cried and cried for fear, guilt, and everything I else. Today I cry at the shear amazement of how well we have handled this year and the progress we have made. We still have a long road ahead, but it does get so much better.

      • May 1, 2009 I left the comment at the top. I was scared and wasn’t sure what the outlook for my family was. It is nearly 4 years later and I occasionally reread Jess’ post to remind myself where we were and where we are now. Our life is different than 4 years ago and while the path wasn’t (isn’t) always easy I’ve come to accept and understand which makes me more than happy.

        It will be ok. You will learn tools and skills that will help you parent. Hindsight is always 20/20, but you can’t beat yourself up about it. Look for supports both online and in real life. Remember that you all are loved.

        It gets better.

      • In my best moments, I forgive myself, and I know that my boy was loved fiercely even when I was headed the wrong direction, or didn’t have the pedal down. In my worst moments, I think I don’t have the time or energy to be so deeply guilty, because he needs me at my best. Either way, I know he comes first.

        There is no manual for parenting, but boy there isn’t even an good galactic guide to parenting with autism. Be good to yourself– that’s what you’d say to your child, after all, if they were feeling what you are now.

        And, lots of hugs, some chocolate and a glass of wine when all else fails.
        : )

        Karin

      • Oh! And a really important Ps. I learned right here, from Jess, that one of the best things you can do is pay it forward. When you’re ready, reach out to someone else and give them a hand. Go look for places in your community where you can help educate and support other parents and kids. It’s important, it will make a difference, and gosh darn, it’s good therapy!

        Karin

      • I was exactly where you are. I didn’t find out until my little guy was 4 1/2. This month he will be turning 9. Now that you know, you can get the help you all need. Don’t beat yourself up over it. In 5 years from now you’ll be looking back at how far you’ve come and be thankful for the day things changed. I’m not saying you won’t have a bad day where you’ll think “what if we had found out earlier?” because those days still creep in. But you know what? When you do find out you become part of the club. And this club is full of strong, compassionate people who know exactly what you’re going through. So when those days do creep in you have people that understand, from here on out you are NEVER alone. Say that to yourself. I am NOT alone. *hugs*

    • You have not been parenting wrong because somewhere along the way you realized that your little one needed more help. Beating yourself up will not help your little one and it definitely will not help you. After my daughter’s diagnosis I spent a few weeks spinning my wheels not sure what to do or how to “Start” then I realized that the best thing I could do was slow down, realize that no matter what outcome I loved her all the same, learn as she was learning, and know that no matter how we got to this point I got a say in where we went from now on. We have our hard days, our setbacks, and our fair share of joy (small accomplishments and large) through it all I learned that I am the best parent for her because I love her more than she will ever know. Just like Jess has said this is a journey with winding roads, choices in turns to make, and sometimes pitstops to refuel our souls. Good luck and know that we are always here for you, those that have been down this path.

    • I have been in your shoes. We all have. Today you learn to stop looking back and you make yourself focus only on today. Today you do know and today you will get help and today begins a new journey for you. We are 2 years ahead of you down this road and our progress is miraculous. Yours will be too. :)
      Much love,
      Melissa

    • I remember exactly how I felt the day we got our diagnosis 10 years ago. It is so overwhelming and scary. I wish that someone like Jess had been around then to welcome me to “the club” and tell me what this letter has told so many now, What I do know is that this is a “take it one day at a time” journey. Children don’t come with instruction manuals, and as parents we do the best we can for our kids. Please know that there is a community here for you. You will be ok! I wish you the best of luck and lots of love and light as you start this journey.

    • Dear Momma – You have not been parenting wrong. Never. Not for one moment. You parent what you know. You are not clueless. You are a mom whose love for her child is infinite and unwavering. Your path has shifted but please know there are SO MANY OF US walking it with you. Lean in and I’ll hold you. And one day, you will do the same for a new Momma who joins us on our path.

    • My heart is aching for you right now, but please listen to all these comments and be kind to yourself. It gets so much better. I was so afraid and overwhelmed when I was in your situation years ago. I am so, so glad you found Jess’s blog. It helps so much to know that you aren’t alone. And if you read Jess’s blog, or the brag page, you’ll find that there is so much joy in this journey. It’s hard to believe it now, but there really, really is.

      A friend said to me this week, “No feasible solution to a problem ever involves time travel.” You haven’t been parenting “wrong” if you’ve been doing the best you knew how. Now you have new knowledge and new tools and new opportunities, and a loving online community to travel with you. Please believe us.

    • What would make you think you have been parenting wrong? You were “clueless” because you were ignorant (which is absolutely normal and acceptable) to whatever signs your child was displaying, as all of us were at some point in time with our children. Take heart that you are not alone on this wonderful journey. Many have been where you are right now and you are doing the right thing in seeking knowledge and community that will aid you in understanding and helping your child cope with this world. Remember that your child is the same person today as they were before diagnosis: your amazing child.

    • My son just turned 6. It has been 3 years since my husband and I sat in an office with a not so understanding gentleman who told us the news and then sent us on our merry way with only a brochure on what autism is. Since then, I have worried countless times that I am not helping my son the way I should. That I am perhaps too over protective, too over bearing, not protective enough or not militant enough in his therapy and education. That perhaps he would learn quicker if I was more strict or when I am if he will regress because of my actions. When we first found out, I was literally in shock. I kind of knew we would get the news we did, but when you hear it, it takes a toll. There were countless days that first year after we found out where I would introvert into my on thoughts of blame and misery, even though I knew it wasn’t helping anything. It takes a while to let go of what you thought you would have and be able to see what you really have. I’m not going to sugar coat it, this road won’t be full of ice cream and rose petals everyday; but then what parenting expirence is. This road is full of challenges, like any other, and yes, those challenges are a bit different in nature at times. But I promise, you will find a way to lumber over that first hurdle, then the next. The third will be a bit easier, your fourth will be a larger step, the fifth a leap and before you know it you will be soaring past them. You will find the tools and the strength you need to press on. You will find a good rhythm for you and your family. And eventually, you will learn to let things go that really don’t matter (for eample, my son enjoys his dessert as part of breakfast instead of after dinner). The only advice I will give is this: know that you are not alone! If you feel isolated in real life, know that there is a very welcoming community of parents online (here at Jess’ Diary as well as others) that are more than happy to share, listen, give ideas and suggestions or simply to praise when you need to hear it. When you are ready, we will all be waiting. :) My other piece of advice is that smart phones with the right apps make it possible to go out and enjoy any adventure you want with your family ;) HUGS!

    • We all do our very best with what we have and as we learn we do it different. Like they say…when you know better you do better. I would bet many others would agree with this – we all sometimes wonder what if we did this or that. Here’s the thing…your past is done and there’s no going back. Leave it there and don’t beat yourself up too bad. We have been there mama. We just move on and do the best we can. I’m glad you found this page. You have people rooting for you here!!!!

    • I’ve been there too. My son was four when I found out. I’m a child care worker how could I have missed it. I was telling other parents to get there children assessed and was completely missing what was happening with my son. I noticed a huge change in him at 21/2 when my daughter was born. Just put it down to jealousy and because he was having speech problems. He had language but he was very unclear and I was one of the only people who could understand him. That must be frustrating! Well yeah but there was much more and one day it hit me like a ton of bricks. How could I be so stupid! So at four almost five my son was diagnosed with autism. It’s been a year. I know how you feel im with you. I know this is easier said than done but don’t beat yourself up about this. There are many of us who have been through this. We are with you.

  215. Be gentle on yourself. As parents we do the best with what we know, with love..and at different times our kids need different things. As we learn and evolve as parents we can find new ways to nurture their growth and development..It is a learning process for us and for them. It is rarely easy but these kiddos are such gems!

  216. This was so touching I am at a lost for words. It is everything I have ever felt and more. Thank you for being the voice.

  217. #300 comment – Wow! Yes, we all have felt this way and sometimes let those feelings creep in again. That’s why we come here. To remember we are not alone in our feelings and to always have hope. God has given us all a precious gift (I have 3!) in our beautiful children. You can do this.
    Lots of love being sent your way!

  218. @MyGoosey– Big hugs to you, and welcome to our ‘little’ family. Your love for your child led you to a diagnosis and that is the most loving thing you can do. Now you know so you can go forward and grow together. It won’t be easy, and there will be times that you think that you can’t go on. YOU CAN!!! There is so much love and support from this amazing group of people so be sure to reach out when you need it. Read Jess’s blog, daily if you can…there is so much to be said for reading another parents words and being able to say, ‘me too.’
    Blessings to you and yours!

  219. Please know that you are not alone. None of us are….take one moment at a time. If you find yourself looking back, don’t linger there. Embrace it. But don’t linger. And beyond all remember, there is no one way to be a perfect mom but a million to be a great one! And you are great! You know now. And now, you will do what you need to do…please be gentle with yourself. Stay linked to this blog. You will find more love and light than you can imagine.

  220. I joined the club back in 2006. I still have days when I take the guilt for a ride again, but, as Jess said, those days are fewer and further between. Just know that you will be able to forgive yourself and what you perceive as your bad choices one day soon. You were parenting in the best way you knew how, making what you felt were the best decisions for your child, with the information you had at hand. Now you know more. Now you will adapt. Now you will parent differently, but still with all the love that makes you the amazing Mother you are. I hope you can feel the love and support that we are all sending your way. Our arms are wrapped around you, and if for now that is what is holding you up, then so be it, because one day soon you will be able to stand on your own and until then, we have your back Momma!

  221. We all have to find a way to manage the guilt. The truth is that I have thought I found the “right way” many times, beating mysel up for what I didn’t know/do before, only to change my perspective again later when my child changed, I changed, it didn’t work, or I learned somethin else that seemed even better. We can only do the best we can with the info we have at the time. Think of what you would say to your best friend if she were in your spot…that’s really the truth. Love to you.

  222. I remember looking at my precious little baby boy and thinking he must be “normal”…why would he have both a birth defect and autism. I did this many time during his first year. I loved him so much and I knew we had family members that most likely weren’t diagnosed. Yet still I held on to denial, he’s a boy they talk later, they grow up differently than girls (our oldest is a girl) . We finally got a diagnosis and while it hurt we knew it was for the best (it was longer before I could talk about the fact his diagnosis was severe. Eventually I could talk but I still struggle), there is help for him. He was 2 1/2 and still I felt guilty for having waited that long. This is where I try to hold on to the idea “I can only do what I can do.” Also you have to begin where you are. Don’t let guilt stop that, accept that you didn’t “know” and move towards knowing. We are human and all have our faults, its what makes us precious. Just begin where you are and do what you can do…you’ll be surprised how that will be enough. Cause in reality it is enough. And what you can do will be more than you could of dreamed.

  223. Wow!! Thank you everyone. I have started reading the blog from the first post. Brook sounds so much like my little Goosey. Thank you all for caring. God bless:)

  224. I began reading your blog via my daughter’s postings. I could easily be your mother, Brooke’s grandmother. Our first grandchild, my daughter’s first child, is diagnosed in the autism spectrum. The maternal sense to protect and make things better doesn’t go away no matter the age.Please know my heart if full of love for you and your Brooke!

  225. <3 thank you….thank you…. thank you!!!!
    Beautifully said and inspiring in totality…you touched my heart…. I needed that! A blessing and gift you are :)
    God bless you!

  226. Pingback: Dear friend whose son is newly diagnosed with autism | HighFunctioningMomism

  227. Pingback: Day19 – 5 Blogs I read on a Regular Basis | An Armada of Love

  228. Pingback: The day we’ve been waiting for: Diagnosis day | sewrite

  229. <3 This Jess! I have an inquiry if You could ask around for Me Please…..So We're a Military Family & will be moving to Hawaii soon…we will be in the Honolulu area so anyone who lives there would be really helpful to Me right now! I have no idea what schools & autism services are like in that area…anyone familiar?

  230. Hi Jess, I was hoping you could send me someof your positive energy today…I’m just defeated and I feel horrible for feeling this way!! My baby needs me right now!! I went for me 2nd mamogram and they have found “something” and want to book a 3rd and another ultrasound! I am sick over this. The problem is my little guy has to have dental work done on Thursday and has to be knocked out for 2hrs!!! He needs his mama to be strong for him right now and well im just a mess!! Cant stop crying and I just dont have time to worry about me right now! ! My baby needs me!!
    Thanks Tonia

    • Oh honey, I’m so sorry. Here’s what I’ve got:

      Mammograms deliver false positives ALL THE TIME. I’ve had THREE false positives. TWO ultrasounds, THREE MRIs and none of the ‘stuff’ turned out to be ‘stuff’. But I also know that doesn’t make a difference in the moment.

      You are doing the right thing. Even if, heaven forbid, they do find something, it will be early. And that’s everything.

      Deep breath. Focus on your kiddo. You’ll get through it all, I promise.

      Hugs. ;)

      • Thanks jess! Your right gotta focus on jacob. He needs his mama to be strong. Thank you for your kind words. Wasn’t there a pic posted just breath..thats what im gonna do ((hugs))

      • Hi jess everything worked out after 6hrs of demanding answeres it all came down to someone forgetting to send the 2nd report!!! It was fatty tissue the 2nd mamogram came back normal. That was 2 weeks of hell. Now this mama is taking a big breath of relief and ready for jacobs dental work thursday!! Thank you so much again for your encouragement!!! U r one awesome lady!!! Huge hugs to you and your family!!!!
        Tonia

  231. Dear Jess.
    I would like to know if you have this beautifull letter in spanish.
    I am a mother of two boys in the spectrum and I am working with a group of professionals to bring a free of charge conference to Dominican Republic,
    for parents and teachers.
    If you don’t have it in spanish. Would you let me translate it with your written permition? It is not for sale, nor for my credit, but to be able to touch so many
    mothers and fathers with less opportunities than us here in the USA.
    Please let me know as soon as possible and if I could share in private the flyer,
    draft and details of the conference, I would love to write you more.
    kisses and hugs
    Johanna

    • By all means, please do. All I ask is that you post it here when you’re done, and include full attribution and a link to the blog wherever you use it.

      Gracias! ;)

  232. Hi jess is there a place we can post pics?? I have a picture of jacob that I would love to share…it reminds me of a picture of brooke u posted and would love to share it with you!

  233. Hello Jess ,
    I read all your posts and live some what of a life you live , I need help with school , nasty notes , phone calls , I E P s…
    Autumn has just started Kindergarten she has Myotonic Muscular Distrophy , and autisum non-verbal…cant write doesnt follow rules the way school wants her to , at times she covers her ears and lets out a yell, she is on a feeding tube and has threapy for food issues and aid to help her at lunch , they get upset if she doesnt eat what I have sent..I have taught over and over how to do things and they call and complain about her. Please send help my way .
    Thank you
    Lori Johnson

    • Lori,

      I’m going to move your comment to the COMMUNITY SUPPORT PAGE so that others can offer some support / suggestions.so please check there for responses. Also, check the thread on Diary’s FB page from Thursday night. A number of folks said they’d be happy to connect with those needing an ear.

      xo

      J

  234. Read the tooth fairy post a few times today even sent it to my mom! She peed too! Thanks for the laugh again! Had another crying burst again today!! Just cant shake this yucky feeling! Just want to say I stumbled across your page months ago…sometimes I just feel so alone..lost most of my friends as most well all of my time is devoted to my little man and also my older daughter as I know how hard this journey has been on her as well. Sometimes I find it so hard to give her the attention she needs as Jacob needs most of mine 24/7..my husband and I dont have really anytime so it was a little comforting to read that you and your husband dont sleep in the same bed either as we r sleeping with our little ones..in other words I dont feel so alone after I read your posts. You give me hope, comfort and damn it u even make me laugh something that I dont do nearly enough any more..always so focused on routine avoiding meltdowns from the bottom of my heart thank you for what u do!!! Keep on writing!
    Thanks Tonia

  235. Thank you. This was perfect, and exactly what I needed. My son was born with a birth defect called gastroschisis. He just turned four two weeks ago, and was recently given the preliminary diagnosis of Aspergers, pending further testing. In my logical-rationale mind, this is a good thing, something I’ve known for a long time. And, with my past as a gastroschisis mom, I should be used to accepting things I cannot change. But, in my non-rationale-emotional inner-being I feel so heartbroken and alone. My healthy-kid friends (because B has a lot of issues related to gastroschisis) offer me support, but they can’t really understand. I’ve worried since I was 22 weeks pregnant with my love about his health. It pains me, to know in advance, I guess, that he will struggle on emotional levels too. I just want my sweet bug to be happy. Thank you for making me feel less alone.

  236. I tried to leave a comment earlier, but I don’t think it went through. And I don’t think I can re-create what I wrote, but I do want to thank you for this letter. We’re just dealing with an Asperger’s diagnosis for the first time — with a daughter who is almost 16. It’s been a challenging and confusing 16 years — and now it feels like starting over. Thank you so very much for your post. I know I will go back to it often as we try to make sense of our new world.

  237. I can’t believe I’m just finding this! Every single word resonates, and I want to send this letter to myself three years ago. Thank you… this is going to help so many moms in my circle.

  238. I’m at a loss for words . This is exactly how I feel Like I’m wearing an invisible cloak that only mothers that have gone through what I’m going through on a daily basis with my baby girl know just what I’m feeling.. God bless us all…

  239. Someone please help!! Jacob has had sleeping issues for a long time now! Last night he woke up at the 2hr mark screaming and crying to the point he couldn’t breath. I calmed him and he said he was worried about me. Worried cause im getting older. I said im fine..but thats when he said caillous daddy said the bird died cause he was old…this is an episode of caillou he watched probably over a year ago! I held him all night and for 4hrs is was one nightmare after another. Jacob is 5 and very attached to me. I really don’t know how to handle this and im sick over it!!!

  240. Anyone in the autism community please help!! My son in the last 2 weeks has ordered things online using his dad’s credit and his sister’s which I have had to try to cancel. He just doesn’t understand the concept of credit and that you have to pay it & that it’s not a gift card. What do I do???? I just don’t know how to get it through to him that he can’t have everything he wants!

    • kathleen, may i suggest that you ask your question on the community support page where folks will see it and hopefully weigh in with ideas? thanks.

  241. Hi, I have 3 year old twin daughters who were diagnosed with autism in October 2013. I had known for some time as my stepson is also on the spectrum.
    They were born 10 weeks early and the doctors think this is the cause of their autism.
    I worry a lot about their futures, as they are non verbal, but make lots of sounds. At the moment, I am worried about the eldest of the two (she’s 5 minutes older) as she has started biting her 2 year old brother. He is not on the spectrum but does have a speech delay. I’m at a loss of what to do, or even how to prevent it. If you could give me some advise I would really appreiate it. Thanks

    • jeanette, i’d suggest reposting your question on the community support page where hopefully some readers will chime in with suggestions. good luck – i hope you can get to the bottom of it.

  242. I have three kids 2 daughters 22 and 17, then I have Christopher the youngest he’s 8 and has aspergers syndrome. My question is how does Katie deal with Brooke and the attention she gets? From what I’ve read on your blog you seem pretty good about giving each girl equal attention. Today though, going on the duck boat, just Brooke and yourself, I’m so jealous ;). I want to take my son to Disneyland, just the two of us. We went almost two years ago and I just felt my girls missed out on a lot and had to deal with way too much. They didn’t mind, but if it was just C and I we could cover what he wanted then when we all go for Christmas we can do everything else, or vice versa. Mind you I’m in no way a millionaire, I’m a single mom  gets torn in 3. Thanks for your time!  Always Liz

    • as a single mom, i would imagine that it’s got to be tougher. i have the luxury of dividing and conquering (‘conquering’ said toungue in cheek, of course) with luau, so one on one time is easier to pull off. and it’s also beginning to change as katie’s social world takes on a life of its own – at thirteen, she’s out more with friends, off at bar mitzvahs on saturday nights or, as she was on saturday when b and i did the boat, on a full day trip with her drama club to a festival. life morphs and goes through cycles. we steal minutes wherever we can. good luck. i have a feeling that you’ll find your own way to make time – and to make the time you have count.

  243. And so–what to do when diagnosed child’s IEP team refutes diagnosis and proceeds with own evaluation to deny autism and any necessary adjustment to plan… What then…? Not everyone is so accepting….

  244. Its tough…. One faith a bit of hope.., we, mom hold on to it..,
    Cant scream loud but heart weeps …. God why this injustice…
    But a ray of hope ..,

  245. Hello :) I am trying to find a way to private message you or Email you. I would love to send Brooke, Katie and your family something from Canada. Especially something for Brooke’s graduation to middle school :) I’m not sure how to go about it.

    • lauren, that’s incredibly kind of you! unfortunately, i don’t have an address to which i can have anything sent, so i’ll have to gratefully decline, but please know how very much i appreciate the thought! – Jess

  246. I realize you get a lot of comments an May not read this one for awhile. I just have had this feeling though that I should get a hold of you though. I have been watching your Facebook page Diary of a Mom and it honestly is a bright spot in my day even when you guys have bad days. I do not have autism but severe anxiety and I write as an outlet. I wrote something for you and the girls and I would like to share it privately with you if that would be at all possible… I love seeing how much your girls grow and branch out even in the difficult times. So if possible I would like to share what I wrote for you in some way.
    ~Shania

    • Shania, thanks so much. Unfortunately, there’s really no way to share privately here unless you want to leave it in another comment using a pseudonym so that it gets caught in moderation and I can read it without making it public. Feel free to do that and then then I can respond on this comment ;)

  247. Hello, my oldest son was just diagnosed with autism last week. To say that I am feeling like I’ve been slammed in the gut by a truck would be a gross understatement. I can hardly process all that I’m feeling and thinking and reading. What stands out predominantly is an overwhelming sadness at the sense of loss I feel for him and our family. I’m terrified. Reading this I realize that your words feel like a lifeline and as I cry for the billionth time since his diagnosis, for the first time I feel comforted and understood. I want to thank you for putting a voice to my fears and reassuring me-a complete stranger – that we can and will be OK. That I can be the mother my child deserves and find my own peace in being a mother of a child with autism. All is not lost.

  248. I have a 16 year old son that has Autism. He was diagnosed at 18 months. Although a long time ago, I can remember it like yesterday. We moved to Florida after living our whole life in NY my husband and daughter are amazing with Joseph. And we are a team for sure. I teach down here and Joseph goes to the same school as I teach. My niece has wanted me to blog. I really don’t have time, but II love Facebook were I show our greatest achievements. He is a great swimmer, kayaker, and friend to all.
    wanted to share that with you.Continued success!
    -Rose Mazzella joerosemaz@aol.com

  249. We got part of our Paper Cloud order today!! I can’t figure out how to send you a pic! My daughter was so excited!!

  250. Hi Jess. I would love to send you an email of something I just read, but I can’t find an email address anywhere. Please let me know where I can send it to. Thank you! :)

  251. I remember reading those words around a year after my first son was dx, my second one was just being assessed at the time too…. I cried so much, not of sadness but of relief to see those words that made so much sense to me… Everything about them meant so much. I got so upset i knew no one at the time of the first dx who would have given me those words. I would have needed them so much, i felt like a zombie, not for long but i did feel happiness had gone away from me for ever… Two years have passed and we are a happy family, with enormous challenges but we are so happy.
    I have met a lady today who has just gone through a dx and that s the reason why i was looking at your piece. To make sure she is reading it straight away. To make sure she reads it now, and then in a year and then every year…
    You are so true.

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