time to forgive

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To forgive is to set a prisoner free and discover that the prisoner was you. ~ Lewis B. Smedes

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Dear Miss P,

I have been carrying the following for six years. It’s time to let it go.

*

You don’t deserve my ire. I know that. I’ve always known that. In fact, knowing that is what makes it so damned hard.

If you didn’t love my kids, if you weren’t so sweet and bubbly every time we bump into you, it would be so much easier to just resent the crap out of you and leave it at that.

But you are. So I can’t.

But still, the anger simmers just below the surface whenever and wherever I see you.

So I plaster on a half-assed facsimile of the smile that I know that you deserve from me. And I ask how you are. Because I know that I should. And I ask how the kids are doing. And how the job is going. Because I know that it’s the right thing to do. And I prompt Brooke to say hello. And that’s the hardest part.

Because for six years I’ve needed to come out and say this to you.

And for six years I haven’t even trusted myself to try.

I know that you did what you did from a place of love. I know that you adored my children and only wanted what was right for them. I know you saw me hurting and you wanted to reach out and make it better. And as I type these words I know how true they are and just by finally wrenching letters into words I see my own folly. I know – I’ve always known – that you meant well.

But, Miss P, you cost us time. Precious, precious time. And no matter how wrong I know it is, I haven’t been able to let that go.

Because when I finally came out and said the words – when I came to the preschool where you had taught Katie and where you still taught in the classroom next to Brooke’s and I told the teachers there – the ones who, like you, loved my girl with everything they had but who DID NOT HAVE THE TOOLS TO REACH HER NO LESS TEACH HER that we were having her evaluated, that the mythical, mystical, terrifying word Autism was on the table, that we were scared to death and trying desperately to figure out what was happening, how to manage, where to go, what the hell to do, you called me at home – something you’d never done before – and you tried to tell me not to worry, that everything was fine.

“Oh, Jess,” you said, your voice thick and heavy with concern, “you don’t really believe that, do you? Oh, honey, don’t be ridiculous.”

Ridiculous – that’s what you said. And I know, I know you meant well when you went on to say that all my baby needed was “a little extra attention and she’d be fine.”

Miss P, with all due respect, you had NO IDEA what she needed. For the love of God, you weren’t even teaching her. You never had. You had taught her sister, but you didn’t teach HER. So you weren’t in the classroom to see her sitting with her back to the circle at circle time. You weren’t there to see her chasing cobwebs in the corners at playtime. You weren’t there to see her running around the perimeter of the room at line-up time. You weren’t there when a mom stopped me in the hallway and said, “She’s so cute. Does she speak? I’ve never heard her say anything.” You weren’t there in our home to see her – or us – completely and utterly lost.

I know there are parents out there who cry Fire! in a crowded theater. I’m sure there are parents who think their typical, shy girl is something far more than shy or that their delightfully energetic son is desperately out of control. But for every one of them, there are hundreds more like me – moms who have agonized for weeks and months of endless nights obsessing over differences that simply can’t be explained away anymore – fears, challenges, a wholly unrecognizable developmental trajectory. Moms who are terrified. Moms who feels like just saying the words out loud, “Something’s not right” is a dramatic and unforgivable betrayal of their sacred responsibility to defend and protect the children they brought into this world. Moms who are dying inside because they finally have no other choice but to to say the words, “WE NEED HELP.”

And when they finally do, to be told that they’re being ridiculous, even in the most gentle way by the most loving teacher they’ve ever met is simply too much to bear.

Do you remember when the evaluator from the public schools came in? She saw it all. Our girl, back to the circle, stimming in the corner, lost. A little girl without a single discernible play skill. A little girl with no novel language. It broke my heart that no one from the school had told us what was happening. That no one had reached into our shocking pink haze of denial to show us what we so desperately needed to see. Had someone – anyone – her teachers, the preschool directors, YOU, come to us – we could have gotten help so much earlier. We wouldn’t have missed the deadline for Early Intervention. We wouldn’t have sacrificed that precious, precious time.

I’ve always wondered what we missed.

What could have been different.

I know it’s not fair to put that on you. The time lost is not your fault. You weren’t even in her classroom after all. But you see, you called me at home. You told me that you KNEW. You told me that she just needed “a little extra attention” and then “everything would be fine.” So you put yourself there. If you could tell me I was being ridiculous, you could have told me that I wasn’t.

Six years later – writing this in rapid fire, holding my breath lest I lose my conviction and scrap it completely – I have come to realize that my anger at you has been misdirected all along. It’s not you that I’m angry at.

It’s me.

I’m angry at myself because I never told you any of this. Because for six years I’ve been a coward. Because I never had the courage to go back to you. To ask if we could talk. To tell you what to look for. To make it right by making it better for someone else.

The time that I have accused you of squandering is time that *I* have squandered.

Six years.

How many children like mine have passed through your classroom in those six years undetected?

Six years I’ve carried this.

I think it’s time for us to get together, Miss P. If you’re willing to listen, there are some things I’d really like to tell you. Like how to look for the early warning signs of autism and where to go to get help. And why talking a terrified mom off the ledge because you feel for her is not always the best way to help her – or her child.

Most of all, I’d like to talk because I think it’s high time that I forgive us both.

Love,

Jess

53 thoughts on “time to forgive

  1. I get this anger completely. I still haven’t forgiven my son’s private preschool teacher for telling me the only thing “wrong” with my son was that he was a badly behaved little boy who needed to only come once a week to school not three times a week. Even after the public preschool team came in and we pulled him to attend their program. They said nothing. We lost time too.
    I agree with you – all teachers, private or public, should know the early signs of autism.
    I’m glad you can forgive now. I’m not quite there yet.

  2. I remember this as though it had been yesterday. You’re right, Miss P meant well but was misdirected! It is time to forgive, especially yourself.

    Love you,
    Mom

  3. I so get this.But this is not anger at preschool, it is at my sons old peditrician. The one who said,”he’s fine” every time I said “something is off”. This went on and on every time we went. And then I got it from the other peditricians in the office when I asked them for help. i felt like I was riding a merry-go-round. Things finally changed when we moved and I found someone who actually listened and watched and spent time with us in the office.He saw it right away and told us what to do, the help we needed to help my son. But part of me is still so angry because it took 8 years for someone to hear and see it. I think about how much further along he would be if someone just listened.

    • I had a similar experience with our pediatrician. I set up an hour appt. with, him sharing my concerns and the observations and concerns of others. I was told that everything she was doing was age appropriate. His response fed my denlal. I was a first time mom and just being hysterical. My daughter was later diagnosed with autism. Her sister’s diagnosis followed a few years later. He never acknowledged them having autism. He’s no longer our pediatrician.

  4. I knew the first time I held my son that something wasn’t right. I called my mom crying that day and told her I had seen something in his eyes that just wasn’t right. For months and months the dr told me he was fine, he would develop at his own pace. At 10 months he was still only laying on his back screaming for hours. He didn’t lift his head, he didn’t roll, he couldn’t stand tummy time, but he was fine. I finally stopped listening to that and asked for help from HeadStart and Birth to 3. They came and they watched and listened and they suggested therapies. A year in they said the dreaded words. We think Braxton has autism. I was shocked, blown away and terrified. They had to be wrong, he was only developmentally delayed, that was all. I’m still angry at that dr. HE WAS WRONG and had I continued to listen we would have lost more valuable time. I get your grief and anger, Jess, hugs you tight. I get it.

  5. A famous quote from Socrates leaps to mind — “The unexamined life is not worth living.”  I admire your courage for examining the
    relationship and the burden, and for making plans to address it and bring good out of it for those who come after.  I hope there’s another
    blogpost at some point down the road about the fruits of the conversation it sounds like you’re going to have.

    Hugs!

  6. The sad truth is that this goes beyond our children’s teachers. When Molly couldn’t walk at age two and had no language, even our pediatrician told me she’ll catch up and be fine. I think it’s up to us to teach for the kids coming up behind us. Now the pediatrician calls me to ask if I know a good o.t. I’m happy that she is recommending help to her patients. No one ever even told me about early intervention! Sad how behind the times we all were. Now it’s our job to speak out which is a great job.

  7. Trademark Jess: searing honesty. This is one huge bandaid to tear off.

    Ours was a the speech therapist. “Of *course* it’s not autism.” And I was happy to go along with that. And then, later, a psychologist who recommended immediate, intensive in-home ABA. “Seems extreme,” said the pediatrician. And I was happy to go along with that.

    Last month you talked about the happy pink bubble? Yeah, mine was a desperate pink bubble. But why? If a doctor had diagnosed an extreme medical condition–cancer–I’d have been ferocious in getting, right away, to the most aggressive treatment possible.

    I find it a lot easier to forgive the therapist and the pediatrician than to forgive myself, but this post is making me consider what purpose that’s serving.

    Karin

  8. DOAM,I am sure you will receive many replies today saying similiar things, I am sure of it. Unfortunately there are many well intentioned people that we need to forgive. The act of forgiveness is NOT for the other person, but for ourselves, to let go of what could have been. Forgive yourself first and then speak to Miss P.

    “Do not let your heart be troubled and do not be afraid” Psalm 34.

    And when your are done with Miss P., I have a couple of peeps that you could speak to on my behalf…..okay okay, I’ll do it myself!

  9. I relate to this so much. When Aidan was around 18 months we began having issues with his daycare. We set up a meeting with the director & his teacher to discuss the issues & make a plan to work on his behavior issues. We went to his pediatrician because “something wasn’t right”, we were told they don’t test for autism or adhd until age 4. A month later I had to stand in a classroom of parents picking up their toddlers while the smug classroom helper made me read a note from the directory informing me Aidan was no longer welcome at school. We found another daycare for a few months but his screams of terror when dropping him off in the morning broke our hearts. I ended up leaving my job to become a stay at home mom because daycares were not an option to us. Two weeks later my mom came by and cautiously told me she thought he was autistic. I was on the phone the next day setting up an appointment with doctors who specialized in neurological disorders. To this day I am still bitter at the daycare for kicking my son out and upset that our pediatrician convinced me it was too early for testing (since then she has stepped up and apologized).

  10. Thanks for writing this post. I am a jr kindergarten teacher and your post proves I’m doing right by my students. I’m guessing some educators find it easier to “pretend” nothing is wrong or they just don’t know something is wrong. I can tell you, it is difficult to look a parent in the eye and tell them my worries about their child. However, it is my responsibility to do it. I am thankful someone was honest with me about my son (who has since been diagnosed with PDD-NOS).

    • My son received EI services for speech and developmental delays for almost 2 years before we pursued an autism diagnosis. He worked with incredible teachers and therapists, but no one was brave enough to tell me they had suspected autism until I raised the question. I felt shocked and betrayed. I had relied on their expertise and they had been too afraid to speak up. THANK YOU for having the guts to do the hard thing.

  11. Oh. Oh my gosh, Jess. This is huge.

    I get this because I felt a lot of anger at E’s first school. A good private preschool in an idyllic setting which really wasn’t very good or ideal at all.

    They admitted they didn’t know what to do with him. They basically kicked us out and pointed us in the direction of the integrated public preschool. They were the first people to suggest Asperger’s to us (and yes, the kid was just three). They gave us a list of OT providers and neuropsychologists to choose from.

    I didn’t like that school for a lot of reasons NOT related to ASD. And I have sometimes wished I’d chosen differently for him. My younger son’s current preschool is fantastic. What if E had been enrolled there? It’s so lovely.

    But then at this fantastic school, they might have missed it. Who’s to say? They might not have seen the signs, known what to do. And it’s hard to separate the hurt. But I came to a place of supreme gratitude:

    Thank you for saving my son. Two years later he’s on top of the world. “Early” intervention for Asperger’s saved his life. I’m convinced of it. Our recent neuropsych eval confirmed it.

    So it’s different from your experience. Very different. But I’ve worked to separate all of my emotions and be truly grateful to that awful school.

    And you, you have come to a place with Miss P that I am in awe of. And I am anxious to hear how your meeting with her goes. Because you will help her see the signs. And to quote Oprah, “when you know better, you do better.” You will. She will.

  12. Jess, thank you for putting into words what so many of us have felt. I’ve been wanting to write a similar letter for years to someone in my school, this was just the push I need to do the same, to help families just like me. Thank you for your heart.

  13. Ironically, as I was reading this, I found myself thinking “Huh, I’m glad I don’t have that anger. I mean, we knew from birth that there was the potential for developmental issues for Nik. I let go of all my anger years ago.”

    Pride goeth before a fall, no?

    I poured a cup of coffee to contemplate what soothing, supportive words to write to you and the dam burst. All of a sudden, I was back in the time when my son’s current school (exclusively for special needs) didn’t know enough about how to evaluate a nonverbal, multiply-disabled child such as mine. Despite “the very high likelihood that Nik is on the Autism spectrum,” he didn’t meet the language threshold for reliability in the testing. Yet, here we are, more than four years and a speech generating device later, Nik is in the program he should have been in sooner. I so often stuff down the feelings and “What-if’s” but I don’t think I’ve actually forgiven and let it go.

    It’s time. And I know that it’s a waste of my time and precious energy to rail at what “they” didn’t know. They DO know now and the landscape is so different. And I am taking my anger and using it to work toward helping to make sure that doesn’t happen for other families.

    Anger is such a powerful emotion; it can either leave us stuck and frustrated, or it can impel us to action. But the forgiveness? That’s tricky.

  14. OH Jess! I can so relate! After multiple calls and visits to the pediatrician’s office expressing my concern for my girl and being told, “Oh, she is a twin. This is normal.” or “Those are the terrible twos!” or, the best, “Mrs. L, you need to be patient!” Then finally when speaking to the doctor I worked up the courage to say the word…it had been in the back of my mind for so long but I could not speak it…I finally asked, “Could this be autism?” Her response? “Absolutely not!” Yet a month later I sat in with my girl in the cold neurologist office to have my worst fears confirmed. That was 11 years ago and I still resent her willingness to blow off my concerns.
    And yes, I completely agree with Oprah (who doesn’t?). I know better now and I know when to push and demand for more information. I know the word that I was so afraid to speak for so long (even refusing to allow the IEP team to use speak the word since it was a diagnosis and we were there to deal with my daughter, not a word) is simply just a word. It is not my girl. It is a small factor of what makes her whole.
    I hope that doctor learned from that experiene. I hope she does not offer flippant responses to desperate moms. I pray that she listens before she speaks.
    On a side note…I wrote my very first blog this week because of you. I have wanted to much to do this for so very long. To share my experience. To let other moms know it gets better (and worse, but never as bad as those first few days!) You have inspired me! I have read your blog for 2+ years every day. You have forever changed me. You invited me to live in your village and made me see I was not alone. So, I say to you, Thank you! You will never know how grateful I am to not be alone in this world of autism.

    xoxo!
    Becky

    • “…I worked up the courage to say the word…it had been in the back of my mind for so long but I could not speak it…”

      Becky, I was the same way. In fact even seeing the work in print — on a book cover, for example, was enough to make my knees almost buckle. After 10+ years I can now say it freely and easily. But remembering how much power that word once had over me…what a journey.

  15. It takes a lot of courage to write a letter like that and to then have the follow up conversation. Please know that you’re helping all of us by letting go of this anger/pain and engaging instead in constructive dialogue. I have my own anger/pain (not autism related) that I still can’t let go of but maybe one day I’ll get to where you are. I hope your letter is received well and good things come of it.

  16. We went through this in preschool, and my daughter even went to an integrated preschool and was on an IEP for speech and, at the time, they thought she might have some cognitive delays (thankfully, she does not seem to, now). Our ped saw K in ALL her glory, so to speak, and told us she really thought she had autism. She wrote a letter to the school, which they ignored. We saw a dev ped, who sent a whole report to the school, which they ignored. My child was, literally, treated as a bad kid for 2 1/2 yrs of preschool. No behavior help, except to tell me it was my parenting making her that way. We didn’t get help until things really went down the crapper in kindergarten and she started hitting other kids and having daily, giant meltdowns, and it is also when the social deficits really shined through. We have had a long road with the school. We have an autism dx from 2 major children’s hospitals in Boston, and it still took us a long time to get the school to understand. Now they do, but now we are facing down 3rd grade and I am scared to death b/c things aren’t awesome. And school is getting harder. And I am left wondering, what if she had gotten ABA all those years they denied anything was wrong? What if something had been done? Would life be better for her now? I have a lot of anger myself, that I have slowly let go of over time, but it is hard. It is my child’s life they affected, not understanding what she needed. Brushing it off. That, is hard to forgive.

  17. Public school teachers are sometimes devastatingly obtuse. My personal experience was not with autism, but with child abuse and depression. I was displaying every sign of trauma and self-destruction and my teachers called me lazy and incompetent. I’m here to tell you from the perspective of the child, that I, too, am angry. This is the one offense I still don’t know how to forgive, because if my teachers had taken one moment to notice the truth earlier, who knows where I might be right now.
    Brooke is lucky to have a mom like you, who notices and advocates and defends. I’m sure that in her own way she is grateful for you.

  18. I relate to this deeply, although my experience is not with autism but with child abuse and depression. In middle school (and perhaps before), I showed every sign of emotional trauma and self-destruction level depression. I was so lost I was incapable of completing my school work despite higher-than-average intelligence, and my teachers called me lazy and incompetent and humiliated me in front of the other students. I am still angry, and this is the one thing I just don’t know how to forgive. If any of those teachers had taken just a moment to see the underlying issue, who knows where I’d be now.
    Brooke is lucky to have a mother like you, who pays attention and advocates and defends. You are making a difference, and I’m sure in her own way she is very grateful for you.

  19. This is a brave post. I am so glad for having read this…because I have some anger, too, and I also need to confront it. We were incredibly lucky…it WAS our daycare director who told us that he *may* be on the spectrum, but that help was available. She was the impetus for our pursuance of Early Intervention.
    My anger is with others…and I feel my own blog post brewing.

    I hope you can have this discussion with Miss P…and spread some awareness so that next time, precious time isn’t lost…

  20. I am sensing a theme here. My son was picked up by EI at 2.6 for sensory integration issues and delays in pragmatic language. I asked about a spectrum diagnosis because I have a M.Ed. in SPED and recognised the red flags. I was told, no he has too many interests. Onto integrated preschool program where they even brought in a consultant from the May Institute, still no diagnosis. Neuropsych at 4 emphatically said, NOT AUTISM. 3 different Pediatricians missed it although one said he was ADHD. Three and a half years after the EI evaluation he was finally correctly diagnosed by a Child Psychiatrist. So wish we had begun behavioral interventions when he was younger, don’t even know who to be angry with. One thing I do know for sure, my son would be in a better place today if the diagnosis process hadn’t been so long and drawn out and that sucks.

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  22. My son is adopted via the foster care system. When I got him ay 8 months, I started asking for evals. He was like no other baby I knew,and I knew he needed something different. The social worker just kept saying he would be fine…fast forward to the neuro-psych testing at 3 years old. No surprise that he was diagnosed with autism. At least the social worker had the decency to apologize for the wasted 21/2 years…

  23. My son’s first special ed teacher told me she didn’t think he was “spectrummy” when I told her we were taking him to the autism center for evaluation.
    She is the world’s sweetest woman, but I’ve never gotten over it. I emailed her right after the diagnosis (and after she was no longer his teacher) to let her know my instincts were right, and that perhaps she should trust parents more. I was nice about it, but I never heard back and I haven’t seen her since.
    You’re right, Jess, it’s time to let go.

  24. Mine was my pediatrician who just said “well probably just a speech delay but if you WANT to you can call this number and have her looked at by EI” so glad I did and did not listen to the “she’ll catch up…blah…blah” plus all the family who thought I was nuts. But by 19 months my baby had a Pdd-nos DX, then by 2 1/2 Autistic Disorder. we still have a long way to go at 5 yrs old but I don’t know where we would be without all the Early Intervention. This is a very brave letter…I hope you do get to talk to her and help her save precious time fir many other students that will come into her classroom. They need to know the help is there and will give the best possible outcome. Thank you as always …amazing post!

  25. This was my child’s kindergarten teacher. I so wish it wasn’t but it was. I have let it go but it was hard. Really hard. I still walk a wide circle around her when I see her.

  26. I totally get this! Since I have had my daughter, now 2.5 years, 2 schools have either refused to test her or ignored the testing outcomes and refused to give her the much needed therapies because it is “medical” not “educational” in their opinion. It holds my daughter back so much. Now this coming year we are on to our 3rd school in hopes, not much hope, but in hopes that we can get a better result. I know your anger, but I am not to the point of educating because everyone has ignored what they have right in front of them. I am angry because even knowing what to do, they refuse it and my daughter continues to be neglected.

  27. Wow Jess, powerful words! This take me back 6 years back when my son was also 2 and I spoke to his Pediatrician (at the time) about how worry I was for my child but he insisted that it was all in my head and that my child was not autistic. I knew in my mind and hear that something was not right, but I decided to follow the Doctor advice and wait. Time wasted for sure.
    I did went back years later and told him how wrong he was, and he admitted he needed to learn more about the early signs of Autism and gladly he has!

  28. I know this anger well, we went through the same thing with our pediatrician (his partner, too, who actually told me I should be grateful that my 18-month-old was mute because most parents couldn’t get their toddlers to shut up!)

    But thankfully it didn’t take him long to apologize and admit he was wrong. And he’s made it a significant part of his practice to look for the early warning signs. Even after all of his work to make amends, it was hard to let the anger go. But I did. And you are well on your way with yours.

  29. I’m glad you are forgiving yourself, first. We can all see our reflections in this post if we think about it. My reflection shows up with our pediatrician in the background, waiting and waiting…until my son was nearly four. That too, was too long in my mind. Thanks for this post.

  30. Ohhh, for me, it was every one in my family. Except for one or 2 people, who suggested something may be wrong, every one was in denial. My daughters ped at the time also had no worries. “She was early (premie and SMALL). She’ll do it in her own time”. When she still wasn’t crawling at 1 year old…she said don’t worry. When she still wasn’t walking at 15 months (didn’t until 18 months) Don’t worry. She’s not talking…don’t worry, ect.

  31. Wow! You know, Jess, I have said this many times, “it’s like you are in my head”. Your thoughts have never hit closer to home than this one. I had to read this entry in parts, digest it bit by bit. The beginning with my morning coffee…the middle after I walked it off…now the end. Forgive. That’s a tough one. It’s a process. If you can do it I guess I can give it a whirl too. Bit by bit! Thanks for showing the way!

  32. Yep. My kid’s preschool teacher basically called me crazy to the psychologist that came out to observe him at school because I thought it was autism. I also have some anger.

  33. Whoa. I was so not ready to read this one today…I should keep tissues at my desk.
    It took nearly seven years for us to whisper the question to our former pediatrician concerning our oldest son. She laughed. She asked J to do a couple of things like count to 100, color a circle and hop on one foot. When he easily did them she laughed again. She said, “I know autism. My son has severe autism, so I know autism when I see it. Trust me, your son is fine.” We spent 4 more years hoping she was right, knowing she wasn’t and doing our best to manage life and help them the best we could. Just over a year ago, we stepped out again and took two of our five children to a pediatric neurologist. I held my breath and fought back tears even though I completely expected what I was going to hear. Both of them are at the “mild” end of the spectrum and often “pass” for being neurotypical, that doesn’t mean the struggles we do have aren’t very real though and I can’t help but wonder how much further we could be if we would have pushed harder way back when. We currently have zero help since we homeschool we don’t qualify through school and cannot afford private help. I think we would have gotten more help and made some very different choices had we gotten a dx years earlier.
    Thank you for this post, it’s the kick I need to let go, to stop looking back and just keep swimming forward…also a good reminder to trust my instincts.
    I hope you are able to truly let go and to talk to her so that you can have that closure and maybe make a difference for the next Brooke that comes across her path.

  34. Apologies for the long post, but this one really struck home.

    One of my son’s preschool aides when he was 3.5 said he had Aspergers, just like her son, and then went on to tell me 45 minutes of horror stories. I asked the head teacher what she thought, and she said no way. I read the early signs of autism, and none of them seemed to fit. His speech was advanced, not delayed. Our neighbor who had a kid two years older with autism didn’t notice. The pediatrician didn’t notice. I noticed that he was different, but it didn’t seem to be preventing him from doing anything or learning anything. It wasn’t until public school and kindergarten that it all fell apart.

    I wish that the warning signs had little vignettes showing you behavior that is of concern, instead of these clinical phrases that could be interpreted in so many ways, especially by parents not wanting it to be true. What exactly is a reciprocal exchange for a 2 year old? Does: “M, do you want some milk?” “Yes please” qualify? I thought it did.

    I have been trying to put together little vignettes – to make the significant behaviors more obvious. But haven’t had much success.

    If anyone has a little ‘aha’ story that they could share about realizing that something was up with their verbal child, I’d love to compile them somewhere.

    • Dthornto, I think you make a really good point here. I was given the MCHAT assessment to fill out when my son was 18 months old and there were some clinical phrases that were difficult to interpret. They asked if my son, for example, pointed out things to me. Obviously they were looking for joint attention skills. Well yes, he did, but he didn’t point and look at me and look back to the object. There is a difference. These are the types of issues that can easily help a child to slip through the cracks.

  35. I have anger towards a classmate. Not because she is slowing me down in getting my son evaluated, but because she had the nerve to tell me “just send him to my house for a weekend and I’ll set him straight”. It breaks my heart that my little boy is so frustrated and unhappy so often. I just want to make things as easy as possible for him.

  36. Oh. Can I pretty much copy, paste it and send it to our former pediatrician? The one who missed all the red flags and the one that when i told him I had contacted early intervention and They suspected my girl was hearing impaired told me that I was taking the right steps. And the same one who a year after she was diagnosed with a hearing losa, still told me it was on my head that there was something else going with her. I guess I also have some anger built up.

  37. I hope I have the guts one day to write and say what you did with this post. I feel the same anger to my son’s SLP who identified significant developmental delays but would not SAY the word Autism but recommended an assessment. Then once we had a diagnosis she set up speech/language assessments in a neutral room so that he could properly show her what he could do. In the end she never believed he had an understanding of language and didn’t think he was ready for speech augmentation. Recently I found a SLP who “gets him” and is helping him but I am now worried about all the other children the other SLP has seen and will see in the future. So much precious time has been lost for my son..and others I am sure. Thank you for inspiring me to do what I should do when she gets back from maternity leave.

  38. This rings so true! For me it was my daughter’s teachers, her pediatrician, my friends, my parents, even her first speech therapist who told me not to worry. Worst of all, my HUSBAND thought I was crazy. Once he even said, “I think you WANT her to have autism.” But I knew. I knew my girl better than anyone…still do. No one questions it now. We could have started intervention much earlier. I live with that every day. So my advice to every mother who has concerns about her child is, “you know your baby better than anyone. She may be perfectly fine, but if you have any concerns at all it cannot hurt to look into it. You will blame yourself forever if you don’t.” Thanks for this post. It is nice to see that others have the same feelings.

  39. such a letter. you are such a strong woman. thank you for sharing. and so many comments with the same feelings. so many who have that one person who didn’t catch it or who didn’t support these parents and their gut feelings. i was there too. i kept asking the pediatrician if things were normal. he kept saying not to worry. i’m not angry with him. my son is high functioning and we often hear the shock that he can’t be on the spectrum. i remember feeling like i was betraying my son by insisting that something was “not right” with him. and the doctor did redeem himself by catching the rare disease that could have seriously taken my daughter from us.

    i do have to say on behalf of teachers (especially in public schools) they don’t always have the permission to say to parents that their child might have something wrong. my mom-in-law is a first grade teacher. she’s an amazing teacher and cares desperately for her students. she works so hard to reach them (and is the source of many strategies for helping my own boy). she’s been in the position several times where she’s seen it in a student but she is legally forbidden to bring it up to the parents unless they ask the question first and then she can only encourage them to have their child evaluated. kind of like the nurse can’t read the x-ray and make the diagnosis. i know that doesn’t excuse the teachers and pediatricians who are asked the questions but then try to explain these concerns away. in the past, she’s vaguely tried to encourage parents to seek out help but sometimes they’re not receptive to it. she’s had parents come back to her and with regrets, that they should have understood better what she was saying. but she knows her stuff and i don’t think that she’s alone out there. in fact, she was the main reason that we pushed the pediatrician to recommend us for an evaluation- and even with the shock of the diagnosis, i’ve still wanted to tell our doctor at every visit “Ha! i told you!”

    i know this isn’t all cases. i was a teacher in public school and in private preschool and 10 years ago, i wouldn’t have had a clue. and there were kids that i came across who had questionable behaviors but i didn’t know. all i can say is that my eyes are now open and i try to make sure i give all the information that i can to teachers that i interact with so that they can not only look for it in their students but so that they also can have strategies to work with any kids they might come in contact with.

    i hope you do get to talk with Mrs. P. i think it will result in great things :-)

    • Your words could have been mine…almost exactly, Jodi. I am a first grade teacher who didn’t have a clue before my daughter was diagnosed. Your response here is wonderfully stated and absolutely true. Thank you.

  40. I appreciate your post and can relate to much of what you expressed. I found myself relieved when finally, at 7 1/2, my daughter saw a neurologist who recognized what her pediatrician, teachers, and family members did not. For so long I had a been told that I worried too much, that she would “grow out of it”, that she was just strong-willed. When in my heart, I was suffocating with the knowledge that there was something more, something that I as her mom could not just dismiss. I felt relief and pain and fear with the diagnosis, but not anger. Teachers are trained how to instruct children, not how to diagnose them. A pediatrician’s primary responsibility is your child’s physical well being. I could never blame them for not recognizing autism in my child. However, I agree with you that these same people who are unqualified to diagnose autism should recognize that they are also unqualified to dismiss it.

  41. This post obviously hit a chord with many of your readers, and me too. Recently I have been dealing with a lot of anger, aimed at my brother, my parents, the people who don’t understand our situation, the unfairness of life. (I haven’t been acting out on the anger–it’s internal, but that feels pretty yucky too). And, as this post helped me recognize, the anger about a late diagnosis. We’ve been dealing with fall-out and meltdowns for at least 12 years, but my brother was only diagnosed 2 years ago. An email from a friend a few days ago helped me remember the importance of love, and connection to family, and I was able to let go of a lot of my anger. This blog post has also helped, and has made me think about moving towards forgiveness as well.

  42. Wow, this is such an amazing post, in so many ways. I can relate to both sides of the story, sort of. I often had people try to talk me out of my concerns about my son, but it was never his teacher or my family, all of whom knew him so well. It was always people who just didn’t get it, so it was easier to blow them off, though their comments DID hurt. It annoyed me that certain people just didn’t trust my judgement or they just thought I wasn’t parenting correctly.

    On the other hand, before I had a child with autism, I could have so been Ms. P. trying to make you feel better, but making it worse.

    I really hope you do talk to her about this and help her understand what to look for. Though that might be awkward and difficult, it could help so many people. I really admire your willingness to forgive! Not sure if I would–I hold on to these things way too long.

  43. I realize after reading all these responses that we were a few of the lucky ones. We had a pediatrician who referred us for speech at 15 months. When I mentioned it at daycare, they told me they were monitoring him and were about to suggest I get him evaluated. He got speech and PT. We had a PT who referred us for special ed at about 21 months. We got a diagnosis just after 2 years old. EI and preschool have made a huge difference. I realize because we were blessed to have people in my son’s life who were educated to see the signs of his delays and take action, we have a responsibility to pass on that knowledge with other parents, doctors and providers. It’s still difficult to explain autism sometimes, but we try to be open about it, to build awareness, but also so that other parents can get the help we were so lucky to have early on.

  44. Hell, my family doctor dismissed my concerns, and my daughter has a well-understood genetic disorder with clear physical signs, I can easily imagine it’s even worse with something that doesn’t have physical symptoms. I went in with her for the third time for the same things and cried in the examining room holding her, begging to be referred to the specialist at the hospital twenty minutes away. The doc said something like, “Oh, dear, you need a hug, don’t you?” and internally I was all, “No, dipshit, I need a pediatric neurologist! And a diagnosis! Hugs I’ve got plenty of at home, thanks, I need you to do your damn job.” Thank goodness he didn’t actually attempt to hug me. I think pediatricians (and teachers I guess) must get so used to reassuring worried parents about everything from rashes to fevers to meaningless minor developmental lags that they’re just on autopilot half the time with the “Oh, no, everything’s fine, Mom, don’t you worry,” thing. It is probably very nice for the majority of parents, for whose children everything IS fine, but it sucks when everything’s not fine and everyone just treats you like you’re Chicken Little.

  45. Thank you so much for writing this. My story is similar. My pediatrician thought I was over-reacting. When my son was as young as 5 months old I brought him to the dr. because “something didn’t feel right.” They recommended I see someone for anxiety. Later on EI came in to evaluate and said, there were a few red flags, but I might want to “wait it out.” Again, my pediatrician blew me off. It took me calling a developmental pediatrician every week for a month and demanding someone see him (I have a brother with autism, which helped my case). He ended up being dx with autism at 22 months…which I know is incredibly young, but I noticed signs much, much earlier. My dr. still seems incredulous that I was right and he was wrong. I just wonder how many other families he blew off…

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