dear you

Yeah, you

~

Dear Friends With Special Needs Kids,

I have something to tell you. And I’m thinking that you don’t hear it enough. So come closer and pay attention, OK? This is important.

YOU ROCK.

Yes, you.

Why are you still looking at everybody else in the room?

I’m talking to YOU.

And no, I don’t mean that you deserve a medal just for parenting your kid. That’s what parents do. We parent. Our kids. So yay, for you cause you stuck around? Hell no.

And I don’t mean to imply that I’m offering sympathy because your path is different – and likely more difficult – than most. It is what it is. And I’m not much for sympathy.

What I do mean is that you rock because of the WAY that you parent your kid. And the WAY that you choose to walk this path.

You rock because you involuntarily calculate the thousand different variables in every situation and adjust for them on the fly. Because you are alert for the danger, the triggers, the anything, the everything that might turn everything on a dime. Twenty, thirty, hundreds of times a day. Navy Seals have nothing on you, kid.

You rock because you spend so damn much time preparing for what look to the world like tiny, insignificant moments. Because you know that there are no such things as tiny, insignificant moments.

You rock because you show your child patience even when you feel nothing of the sort.

You rock because you create a hard shell for the world, but remain tender for your child.

You rock because you have learned another language. Or two. Heck, you even speak Abbreviate – ASD, IEP, DSM, ADHD, ABA, BCBA, BT, RDI, GFCF, ADOS. See?

You rock because you SEE miracles in your child’s smallest victories. Because you celebrate simple successes. Because you know how hard they are won.

You rock because you look out for each other. Because you treat every child as if he were your own. Because you know that it really does take a village to raise a child.

You rock because you appreciate the people who make up that village. Because you see God’s angels along your path – and recognize them for who they are. And tell them how much they matter.

You rock because you don’t ever stop pushing and encouraging and expecting and demanding and believing and celebrating.

You rock because you know how important it is to take time for YOU.

You rock because you refuse to let anyone define your child by his challenges. Because you know there is so much more to who he is than a label.

You rock because you’re not afraid of the label. Because you know that as hard as it may have been to hear, it will be the key to a community for your child.

You rock because you are a different kind of parent. Because your know that just because your child doesn’t have words, that sure as hell doesn’t mean she’s not communicating.

You rock because you do everything you possibly can to figure out what it is that she’s saying.

You rock because when a doctor says, “It’s never been done before,” you hear, “Good, it’s possible.”

You rock because when you get angry, you use the anger to propel you forward. To make waves. To create change. To make life better for your child.

You rock because you refuse to accept complacency – from anyone.

You rock because you talk. Because you change hearts and minds and laws.

You rock because you’re not afraid to think big – really big when it comes to your kids. If programs don’t exist, you will create them. If the system doesn’t work, you will change it.

You rock because you never forget to think small. If people around you don’t understand, you talk to them. Teach them.

You rock because you raise your so-called typical children to know that typical is an illusion and compassion is everything.

You rock because you know that EVERYONE has something to contribute in their own way. And because you know it’s worth everything we have to ensure they can.

You rock because you respect one another – even when you disagree.

You rock because you seek the advice of those who have come closest to sharing your child’s path. Because you never, ever drown their voices out of the conversation. Because you know how vital their perspective is. Because you know that this IS a conversation.

You rock because you give your child the space to fail – giving them the ability to succeed.

You rock because you function on ludicrously little sleep.

You rock because even when you wake up convinced that you can’t, you do.

Dear Friends With Special Needs Kids,

I have something to tell you. And I’m thinking that you don’t hear it enough. So come closer and pay attention, OK? This is important.

YOU ROCK.

Love,

Jess

-

Ed note: Today’s post was inspired by a conversation a couple of weeks ago with the awesome Alysia at Try Defying Gravity (and the Oxygen Mask Project AND the SPD Blogger Network. Chick gets around).

Anyway, It’s been sitting in my draft box ever since because I didn’t really feel like it was finished.

This morning I fired up the laptop and went to my friend Sunday’s blog to see what she was up to. I didn’t pass Go nor collect $200. I just went straight to Sunday. And her latest post was THIS. No accidents, friends. No accidents. 

So I decided to put this up as it is.

Imperfect.

In progress.

And just right. 

Cheers. 

*

Ed other note: Please click HERE to read Dear You Part Two for even more reasons why you rock.)


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107 thoughts on “dear you

  1. The hardest thing I ever had to do in my life was accept that I am physically and emotionally unable to parent my son myself; he’s too strong, too volatile… and I’m too disabled to fend him off when he has a meltdown. So I asked that he be fostered by people who can deal.

    I miss him dreadfully and hate saying goodbye on the weekends that I get to see him, but I know I did the right thing.

    I just wanted to put this up here so that parents in the same situation as myself know that it’s Okay to admit that you can’t do this alone. It’s Okay to allow another family to parent your child so that they grow up as well-adjusted as possible and you are able to cope when you visit them. It Really Is Okay.

    Thank you for writing this Jess xx

    • Missus Tribble — You rock just as much as the rest of us because you are doing for your son exactly what he needs. He is with people who care for him and you continue to be in his life with all the love of a mother’s heart. He will eventually, if he doesn’t already, come to understand why you did what you did and be thankful that you did not give him up only helped him to stand up on his own the best you could.

      Thank you for adding to our group!

      Jess and Sunday, you both have a great way with words. Thank you.

    • I completely agree with Kim! You are the ultimate hero mom. You’re making choices that put your child’s needs FIRST! Every time you say goodbye to him at the end of a weekend you are making the sacrifice all over again to take care of your family in the best way possible. Kudos to the family who is caring for your child, it seems like you both are doing great team work… I’m so inspired… Thank you for sharing… It’s not always easy for people to recognize their limitations and make the best choices that utilize their true resources and compensate for limits… Good for your son, who has a capable family to care for him and a mom who loves him so dearly and makes excellent choices and heroic sacrifices in HIS best interest… Sending hugs to all you moms of special needs kids and the author of this great article!! xx

    • I am with you. My son regressed soooo very much this last school semester that actually, it’s more like he deteriorated after all of the slow & steady progess we had made over the years. The restraints, detentions, suspensions, all negativitity, bullying, etc have done a number on him. Now that it’s summer break, he has been enabled to learn so many new behaviors, horrible “vocabulary” words, new 1 finger sign, demonstrating bullying behaviors, violent, abusive, hateful, etc that the life has been totally sucked out of me. I am seriously considering minimum 1 yr long residential CBT placement with “house parent” living. Still getting a couple of more evals first, but I think I am the one that needs the help now. I have been feeling hopeless,… not for him, but for me to be able to help him at this time. So, thank you Jess for writing this & posting AND thank you Missus Tribble for helping me to feel ok & not so guilty!

  2. Damn girl, it’s not even 7 am and you’ve gone and made me all weepy.

    Thank you for this post. I needed to hear this today and I know so many other parents like us do too.

    And just so you know: YOU ROCK TOO!

  3. Thank you Jess. You make me tear up. I don’t thin we hear this enough. We get caught up in our world, helping our child. Never focusing on us or remember that we DO indeed rock. Awesome.

  4. As I am currently functioning on very little sleep…I am so blown away by this post. you are amazing.
    You have taught me everything I know about rocking this special needs parenting world, and the importance of this village. I am thankful everyday for that gift.
    Now…just don’t tell my mom how much I get around :)

  5. THAT.WAS.AWESOME! I’ve only met one other person that flat out “gets it”, and that’s my son’s teacher. I’m so glad I came across Sunday’s blog a while back. I love this village. :)

  6. JESUS, Jess!! You wanna know what rocks? YOU do. It’s SO rare that I ever comment on blogs, especially when the author has a huge following…..but I just cannot help myself. Every time I go to write a blog post…I’ll pop on over to you or Sunday’s blogs and it feels pointless to try and share all of the things you already have, so eloquently and so dang perfect. Not to mention we have children the same age and almost exact same family dynamic, with my 11 year old daughter becoming wise beyond her years as she protects, includes, teaches, and loves her brother on the spectrum, the exact same way your Katie does with Brooke. I cannot imagine how proud your parents are of you, for loving their grand babies this way, and for sharing with the world what is means to ROCK.

  7. You touched on something very important. The mutual respect given from one Special Parent to another is something special. Like you said even though you may disagree with a point of view, there is a mutual respect given from one parent to another, because you are both on a similar journey, and you know that each of you need support.

    Great post!

  8. You rock, too! I really needed to hear this today! Thank you for all that you are to your kids, your husband, and to the rest of us special needs parents.

  9. You rock for writing this wonderful post. It penetrated my hard shell and brought a tear to my eye. Damn you!! You and Sunday must be trying to break me down this week!

  10. This is amazing! It lifted me up and also made me think of my many sisters & brothers on this journey. Autism has brought many amazing people into my life!

  11. Just found this post and i just wanted to say thank you. I have 2 on the spectrum and sometimes you just need that extra encouragement. it brought tears to my eyes

  12. Spot on. At the risk of inappropriate disclosure in a public forum, I’m just going to say-the past month(s) have been almost unbearable. Some days were minute to minute. I literally have to grab on to words like these and hold on for dear life. Thank you.

  13. Please don’t every stop writing to us all out here in special kids land. We need you. You rock. You know just when to send something out that we all need. you my friend are able to articulate just what it is we go through. I just pulled myself out of a slump a week ago because i was so overwhelmed and wondered how i would go but its all about coming out of those slumps and seeing them for what they are. its “reality”. it’s okay and when we come out of them we are even stronger than before. we do ROCK! thanks for giving me tears of “someone else gets it” today.

  14. WHAT A BEAUTIFUL MESSAGE!! YOU ROCK!! IF PEOPLE ONLY KNEW WHAT THESE MOM’S, FAMILIES, CHILDREN GO THROUGH THEY MAY HAVE A BETTER UNDERSTANDING AND LESS IGNORANCE TO THEIR NEEDS!! WE ARE NOT LOOKING FOR A PAT ON THE BACK OR SOMEONE TO TELL US WE ARE GREAT OR HOW DO YOU DO IT – JUST UNDERSTANDING AND ACCEPTANCE OF OUR CHILD!! THANK YOU FOR THAT BEAUTIFUL NOTE – IT MADE MY DAY!! THANK YOU EDIE FOR SHARING IT WITH ME!!

  15. i’m a first time commenter and just have to say: man…this makes me happy & teary. thank you for your words. thank you for your space. thank you for all that you do. i so appreciate it!

  16. Got this from a fellow mom of a special needs young man (I’ve got one, too), and it really lifted my spirits. Community among the families of special needs kids is so important! I’m looking forward to following your blog.

  17. It’s been that kind of day/ week/ month that I’m not even reading DOAM until 10:30pm–already an hour past my bedtime. And boy did I really, really, really need this one today, Jess! Hey, guess what? My boy played in his school band concert! HUGE. About 12 months of work, most of it his. But did I mention I really needed this one today?

    And right back at you, Wonder Woman.

    Karin

  18. I have no idea how I came upon this today–and I am so grateful I did. I was feeling so isolated, lonely, and I guess sad. Somedays, I am so focused on getting my kid throught the day, lately I realized most everyone is gone…from my “old” life. So, I read this, I read all the amazing comments, a realize I am in fact not alone. I am part of a group of moms who need reminders on days that we are not alone, we do what we do, and we do in fact ROCK.

  19. This is wayyyyy cool! I know Im just being a parent to a child but I guess I never really stop to think about the time and effort we all put into our kids to give them the best possible life…Im just being a mom. A privilege that God has blessed me with…Thank you God for my child!

  20. more than you’ll ever know… after my ASD kiddo was found ‘ineligible’ for services yesterday…. THANK YOU for this. (and THANK YOU to the amazing friend of mine who found this and sent it to me.)

  21. Thank you…If I could give you a hug I would!!! Love it…so encouraging and so TRUE!! Just had my son’s IEP meeting and we do rock! Will print this and keep it near on those days that I need a reminder.

  22. Thank you, Thank you, Thank you for this……I needed to hear this today. I have a son, who is affected by Fragile X Syndrome, and some days are really, really hard. Today was one of those days. A friend of mine read your blog today, and forwarded it to me. I have since forwarded on to my fellow Fragile X Moms. Thank you for such words of encouragement!

  23. I needed to read this. You have no idea. And to Missus Tribble, YOU rock, and so does my son’s biological mom. She could not take care of him despite her love/desire too,(she has challenges also) but she has peace knowing that my husband and I (and his little sister:) can. HUGE hugs to you Missus Tribble.

  24. Thank you.
    I have a son, diagnosed with autism at 3. He is incredible, and has overcome. At 5 he is functioning in typical social settings, speaking socially, reading, coloring, and using his imagination. People told me not to expect too much. I only ever wanted to set him free. I did. It was/is a seemingly endless process. And all the moments you discribed in your post— I lived that. I still do. IEP, GFCF… Milestones, triggers. Checked out, stress, giddy happiness, anger (that’s a new one my son had never shown till 5 months ago).
    The little triumphs, the big celebrations. The next obstacle.
    To read your words… Means the world. Cause if just one person understands the significance of raising a child beyond what is “typical for his condition” is priceless.
    I needed that. And though I’m a stranger, you get it. You get my life, not many do. Thanks. Cause that’s fuel to keep me going.

  25. You Rock. Thank You for your kind words. You don’t even realize ( or maybe u do if u are also a special needs parent) how much it means to hear your compassion for us because yes it is hard and there are days u don’t want to get up, ever. But ya do. My son is 33 now when he was young a mental disability taboo. No one spoke in public about it . Now thank God the younger generation now has so much support. My son is my blessing I know that now. I don’t know what I would do without him or for people like u. You make me smile. You made me realize just how strong I really am:))

  26. Thank you very much, Jess, for posting this. There are so many days when I feel lucky to get the kids fed and from point A to point B, and most of the time I’m just tired. When I speak to groups or college classes about a father’s perspective on parenting kids with special needs, people are astounded to hear a man talking about such things–and will tend to think I’m a “wonder dad” simply for showing up! I try to prove that men are parents too! As a single dad of three teenage boys–two at opposite ends of the autism spectrum, one neuro-typical–I’m no “wonder dad” and am overwhelmed most of the time, but I keep plugging away, and it’s a joy to read your insights in this post. Thank you.

  27. Thank you…thank you…thank you!!! Parents of children with special needs do not hear this enough…and you were right on target!!! Check out my website: http://www.joanbroggibooks.com to learn more about my journey with my special needs son:) After teaching a classroom full of children with special needs and then coming home to my own child with special needs, quite exhausted, I must admit…..This was a joy for me to read today!

  28. Well that was simply awesome. Not surprising though since I am sure anyone that someone awesome like Sunday adores, must also be ripe with awesomeness. Thanks for this post and thanks for being a voice in this world that needs to be heard. Positive, powerful, rockin’. Love it.
    Lisa

  29. Perfect reading for a Sunday Morning. It’s the end of the holidays here – where I go from full time Secial Needs parenting, to the special needs parenting/spcial needs teaching/special needs managing jubbling act that is term time! And this was just what I needed to read.

  30. I’m a mom of three, and our baby girl is special needs, so were new to this whole special needs world. I am so glad I took time to read it. It took longer then it should normally because I had to wipe the tears away every now and then. You are right on the nose for how our lives are, Thank you beyond words for writing this!! It makes me feel a little more normal, and like this community is bigger then I even can comprehend. Thank you!!!

  31. Yep, mama-who-I-never-knew-about-until-today, this one is making the rounds. I was sent the link from a mom who ROCKS in Australia, and I just forwarded it to about 20 other rocking parents I know. Thank you for rocking so hard you make me want to holler. This is a love letter that is perfect in every way.

  32. worked with special needs kids, in their homes for 25 years. Mom’s are the strongest, toughest force in the world! Too bad more people don’t appreciate those saintly women! Shirley,RN

  33. A friend sent the link for this….thank you so much for writing it!! I brought tears to my eyes. I just started blogging about our adventures with Autism, if anyone would like to check it out, here’s the link (hope that’s ok to post):

  34. Pingback: New Quote « C the Explorer

  35. Wow! Thanks so much for writing this…my daughter is 27 years old, and there were days I thought she’d never see the next age. She has a lot of things going on and both of my kids were ADHD. I became a single mom when she was 8 and he was 5 and not only did I have to handle them and their stuff but also my ex husband and his shenanigans and court drama you would not believe. When I went thru all of that, we didn’t have these wonderful internet things, it was just beginning and we had AOL dial up. I read all of these wonderful posts from you guys and see now that there were many people (though not in my circle of neighbors and friends) who deal and dealt with the same things and more! You guys all say what I was thinking back then and I so much appreciate all you do…it removes the guilt I have carried around for years for thinking the things I did and having felt the judgement of others, now know that someone completely gets me and it was HIS problem not mine, that sent him challenging everything I was trying to do for my kids. BTW They are now 24 and 27. My daughter just gave birth to my first granddaughter and she is a terrific mom/very protective like me. She has a diploma in Graphic Design and is working at becoming a Professional Firefighter and my son is currently an Infrastructure Engineer working in Computers with a Diploma in Networking and he builds computers as well. I want you to know that for all you go thru on a daily basis, there is hope on the other side when they are a little older, they really do become more Independent and begin to find their own way. Again, thanks for putting your words down-I must copy and past this to my wall as a reminder to myself!
    Sue Potteiger

  36. I thank you, too, and am sitting here wiping tears and knowing that I read this for the first time on just the right day, for I needed it terribly bad!! We have been in a battle for my daughter’s educational needs to be corrected and I am exhausted, but will not give up the fight until we get what she needs!! We do have angels along the way who have helped us, but this was just the pep talk I needed so very much!! Thank you!!
    Jody

  37. Pingback: An Open Letter To Parents Of Special Needs Children

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