Things I Can't Say

Tips and Tales from an Introverted Mom

Pour Your Heart Out: A Reevaluation

My seven year-old has the cutest smile- missing teeth and all.

He has fabulous hair(that NO, Hubs cannot get cut!).

He gives the best hugs.

And oh, how he loves his mama.

He’s grown so much this year.

kindergarten year

First and last day of kindergarten

He’s come so very far from the preschooler with lead poisoning, to the little boy who was kicked out of school, to getting his diagnosis of PDD-NOS and ADHD, to starting him on medication.

We started seeing huge differences in him at home and his teachers saw the same at school. Our doctor suggested we have him reevaluated by an autism program around here. I filled out the parent surveys six months ago, realizing just how different my answers were from when I filled them out the year before. Dramatically different.

Time past and we didn’t hear anything from the program. I didn’t press it because they had said it would take time and honestly, since he was doing so well at home and school(we had an AMAZING IEP meeting), I didn’t really see a rush for any other testing. He was getting the support he needed and a new diagnosis or a confirmation of the previous one, wasn’t going to change anything(none of the services he receives currently are a result of a PDD-NOS diagnosis, but because of other factors).

But two weeks ago, we got notice that it was almost his turn for his reevaluation.

Tuesday, one of the workers in the program gave me a call to ensure we would be at the appointment and to ask a few questions about progress since the paperwork she was reviewing had been filled out.

I talked about the huge difference since he went on medication for his ADHD. I had never really realized before that there’s a spectrum for ADHD(usually I just heard that term associated with autism). And while there are some kids who only have mild ADHD, my son had holy-shit ADHD(I think that’s the technical term). Previously, we’d been led to believe that ADHD was just one of the issues he was dealing with, but not the biggest concern. But on the medication, the majority of the behaviors that were a concern were under control. He still needed OT and speech therapy, but there was still such huge improvements in everything else.

The worker asked me if I thought that maybe all he had was ADHD and that the PDD-NOS(an autism spectrum disorder, for those of you not used to the alphabet associated with special needs) was a misdiagnosis. Did I see any other behaviors that were a concern.

I took a deep breath, considering how to phrase it.

He’s still… big pause… a little bit quirky.

If you see him in a group of his peers, you’ll notice there’s something different about him. You might not be able to figure out what it is. And before, it used to be a flashing neon arrow above his head, singling him out as being different, but now, it takes more careful observation to see it. But there’s still something there.

It’s not that I had hoped his autism was “cured”(I really don’t think that’s something that can happen), but there was always the thought in my mind that it could just be a misdiagnosis. Especially since he had lead poisoning- the effects of which can sound an awful lot like autism. And his holy-shit level of ADHD, too.  So maybe it’s not an autism spectrum disorder after all.

But I know there’s still something there.

On Wednesday, he and I will spend all day getting his reeval done, break for lunch, and then come back to hear the results.

Part of me thinks that there could be a change.

Part of me thinks there won’t be.

But the biggest part of me?

Doesn’t give a damn.

My sweet Little Bear is doing great. There are still rough times, but he’s showing so much improvement. He’s getting the help he needs. So at this point, I don’t think a change in diagnosis would make any difference.

And I will remind myself of this as we go through the evaluation process this Wednesday.

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Comments

  2. I love your unconditional support for your son. He is exactly who he’s supposed to be, and no evaluation can change that. Whatever you find out, I’m celebrating with you. Great improvements this year – that’s something to cheer about for sure. And the missing teeth! Looks a lot like my six-year-old. Can you believe our babes are headed for first grade?

  3. So glad to hear he’s doing so much better.
    You’re right, it doesn’t matter what the label is, what matters is that he’s getting the right help and support where it’s needed. Good luck regardless!

  4. So awesome to hear that he’s doing good and that you are passionate about getting him the help he needs no matter what his “official” diagnosis it. 🙂

  5. When my son was diagnosed with Autism, my sweetie was so worried about giving him that label, but you know what? It doesn’t matter if he has the label or not, that doesn’t change what he is. We just keep on loving them and work and pray that they have an amazing life. Isn’t that what we do for all of our children?
    Sandy

  7. YAY! Just yay! It’s wonderful that he is doing so well.

    Kudos to you Mama for not ignoring your gut, especially under the glow of such amazing progress. I have a good friend who has three boys, 2 of whom are on the spectrum. They had intense therapy before moving here and when they did, all they really needed was speech… she could have swept it all under the rug, because like Bear, they seem pretty “normal” (normal being a relative term) but yeah, when you look closely, something is different… it’s not major, but it’s still there.

  9. I’m with you – the important thing is that he is doing well and getting what he needs.  I’m so glad for you all!

  10. Praying for accurate and helpful results. But I love your attitude–he’s still your wonderful son, regardless of what label gets put on him, and he’s a gift from God. What a blessing that you’ve been able to see such positive growth over the past year.

  11. What a cutie! he really has grown a lot! I’m glad he’s doing so well. Diagnosis really isn’t that important if your school will give him the services that he needs without it! Hope you have a great summer and happy new school year!

  12. Glad to hear he is doing so well! He almost looks like a completely different child in his first and last day pictures…I *love* his awesome hair 😉

  13. I can hear the relief and gratitude in your words for the growth and change in your Little Bear. How delightful he is making such progress! My youngest was diagnosed with ADD when she was 19, and failing in college. The diagnosis and going onto medication rocked her world in a huge way. So happy for you both!

  14. Autism or not……….he’s still your Sweet Little Bear. Enjoy your time with him now; it goes by much too soon.

  17. Thinking of you! But so happy to hear how much better he is doing. It’s a good place to not need the diagnosis for anything and to know he’s doing well all on you’re own.

  19. So glad you have seen such improvement…I love your description of ADHD.  We tried one med for our son with PDD-NOS with definite ADHD issues(I think I will adopt your technical term from now on;)…but didn’t have a good experience and we haven’t tried any others.  I have recently considered re-evaluating.
    Good luck with the testing results today!

  20. So happy to hear that he is doing so well. The label isn’t as important as making sure he is getting the help and support he needs. And based on the growth and progress you have seen, it sounds like he is getting that! 

  21. I love that you say the biggest part doesn’t give a damn. I love how you love your family so much. Good luck (is that the right thing to say?) on Wednesday and I hope that he gets the help he needs and you get the relief you need.

  22. My little brother had holy shit ADHD way back in the 80s. Kids didn’t get as much help then. Bear is very lucky to have the great people he has helping him, but mostly because he has you.

  23. You have such a great attitude about it all. I am so happy for all of you that you are seeing such amazing progress. I laughed out loud when I read he had holy shit level ADHD!

  25. So glad he is doing so much better.  He is an absolute doll!  Not only did he grow and improve, he lost some teeth too!  That hair!! 🙂  Whatever the results, whatever the diagnosis, improvement is something to smile about, as is the continual progress.  Sounds like he has a fantastic mommy!  Huge hugs, darlin!

  26. I am so glad you wrote this about your positive experience putting your child on medication. So many parents are afraid to put their child on meds even when it is very much needed. As a teacher, I have seen what a positive impact the right medication can have in a kid’s academic and social life. It can be amazing! Thanks for sharing this!

  27. I didn’t read until Wednesday night, but I hope your meeting went well. You are such a good momma to him to know that the label doesn’t matter, just the progress.

  28. He is precious! I’m so glad he’s doing better. My son has Aspergers and ADHD. Medication really helps him out. Without it, he says his brain won’t let him think. 

  29. I SO love the pictures of your boys! This is great. I need to do a 1st day/last day of my kiddo, too. 🙂 

    I’m so glad to hear that things are getting better, and I hope the eval went well (I think it was today – maybe?). Thinking of you guys. 

  30. Such reasons to celebrate! It’s obvious that you see him so clearly and with loving eyes. You are right, whatever the diagnosis he’s still your bear. 

  33. So happy to know he is doing so well. Hope the evaluation will goes tremendously well but like you said no matter what you have every reasons to celebrate how far your son has come and flourish. He looks so happy and that smile…my God he have killer smile 🙂

  34. Awesome that he is doing so well!! The alphabet of diagnoses does not matter as long as he is thriving and you are seeing progress. His smile is precious so he is happy which is even better, what more could you ask for really? 🙂

  35. I hate that I missed this week’s Pour Your Heart Out because I was away. I am still laughing at the “holy shit ADHD”.

  36. I cannot believe how big he is!! I’m tearing up a little reading this. So proud of you and him! You’re right. It’s doesn’t matter what they say. Further information can just lead to more help and answers, but the big picture is that he’s doing so awesome regardless of the labels! Oh, it’s so wonderful to read this!! XXOO Way to go Bear!! 

  37. My oldest son is almost 13 now, and has the same diagnosis as your boy. You are handling this age and stage so much more gracefully than I did. Right now, my sweet boy really struggles with anxiety, but in so many other ways is just a normal kid. We’re finally doing the medication thing. Kudos to you for doing it sooner rather than later!

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