Full Metal Breakdown…

So….today was the evaluation for speech. It went…um…interestingly, to say the least. I am not going to bore you with the ins and outs because boring is not my style. But a few things did stand out from this particular experience.

funny-test-answerOne, lets talk about the actual test. It was ridiculous. It literally was the same exact test that they gave him at two. So, of course, he blew it out of the water. I am starting to see that receptive language, per se, may not be the big issue as much as it is his social -or pragmatic- language. His ability to answer a question socially is nill but he DOES know how to feed a bear when you hand him a spoon. I mean, come on now. Instead of talking in that sing-song voice about that dumb bear…why don’t you ask him his name? How old he is? When is his birthday? What is his favorite food? He is three years old. Feeding that bear seems a tiny bit irrelevant at this point.

Oh, he just repeats what you said back to you? Tell THAT to the insurance company, not that he can give “Mr. Bear” (how original, huh?) a drink of imaginary water.

Two, I have mentioned that Jp does not get down with books. So, toward the end of the test that is full of identifying pictures in books, Jp decided that he was done. The therapist was not. This lead to a major breakdown. It sounded like like this:

 no bookNo book!

No book!

No book!

No book!

No book!

No book!

No book!

No book!

No book!

No book!

No book!

No book!

He was in the corner, losing his mind, wanting to go outside, just all-in-all not having it AT ALL. Welcome to my world, lady. He is done. Just let him go in the play area because you aren’t getting any more out of him in this condition, I can promise you that.

Then comes “the talk”. The part that I dread. Where some stranger tells you about your child and you sit there and are forced to listen even when you do not always agree.

She agrees that he could benefit from speech. I explained my insurance was reluctant to pay for it when he scores well on expressive, which he did (again, these tests are highly inaccurate or every single other three-year-old that I have ever met is highly advanced), so she said she would add in his (many) articulation issues and hope for the best.

Then, she wanted to talk about the meltdown. Oh, that? I had almost forgotten such a common thing when faced with yet another round of fighting with our insurance company. Yes, let’s discuss his tantrum. Great. She felt as though he escalated “quickly” to a massive breakdown. Yep, that is my Jp in a hand basket, I explained, always has been a highly emotional kid. Then she wanted to discuss his sensory issues. She then suggested that “kids like him really benefit from ABA therapy”.

So, this is the second therapist that thinks that he is autistic.

I am not one of those parents that lives in the land of denial about their child’s difficulties. I celebrate the things that make him unique, I speak about them openly, and he is currently on the wait list to have him assessed formally. I guess that is all that you can do. But the second therapist out of two? I have poured through the DSM-V and just do not think he will classify…but I suppose there is always a chance. To me, it wouldn’t matter either way.

What is crazy is that I have to fight so hard to get this kid any help at all. Especially when I have not met a therapist (or person for that matter) that thinks he does not need speech (and more).  I have to battle his pediatrician for referrals, fight insurance to pay for therapies and developmental pediatrician appointments, and wait on pins and needles to see if, with yet another good expressive score, we are going to be able to get him into speech again.

The system just is not for gray area kids. It only sees black and white; diagnosed disorder and “normal”. It makes me want to have my own breakdown.

hulk

Mom angry! 

Photo Credit:

www.amazinavenue.com

chriswondra.com

Childhood Development

Advertisements

Amber Perea View All →

I'm just living minute to minute, hour to hour, day to day.

22 Comments Leave a comment

    • True. You’d think if someone specializes in a field that they would try a little harder to get to the root of the issue.

      But it wasn’t really her fault…it’s those stingy B’s in the insurance company that are really the problem. You pay all of this money to them and they always try to not cover things. What are we paying for anyway? 🙂

      Thank you for taking the time to read and comment!

  1. I’m sorry! And, really? They don’t have a different test as the child gets older? You should start a non-profit (because I could totally see you doing something like that) that somehow helps families pay for therapy when denied by their insurance. I’m sure there are organizations out there, but another wouldn’t hurt, right? Hug! I hope it all works out in the end.

    • No, it’s the same test but scored differently. I was sitting there like, “really? The bear…again? Just ask him a freaking question!”

      But I don’t think social language is part of the process. I hope I get a referral from the developmental. Sheeh. So complicated, right?

      Me? Start a charity? Now that’s an idea. I’m great with writing grant proposals. 🙂

  2. Hugs! And the gray is smack dab where 29-32 week preemies fall.

    There is an organization out there I’ve heard of called Bee Mighty that deals with therapy rejections and grants, but I think the family works specifically with the hospital/NICU their child was in.

  3. So frustrating. Destroyer is slow to talk too. She can listen to a pitch and sing words or parts of words back to me, but she is a little behind in talking. Not much of a vocabulary. It’s a 12-18 month wait for speech therapist evaluation, unless we want to pay for private therapy.
    I’m not actually convinced there is anything wrong, all of her social cues and skills seem age appropriate, but 12-18 months? Ridiculous.

    • What?! Have you checked with insurance? Mine (albeit imperfectly) will pay for speech with a certain deviation below the mean. And we have Blue Cross…which sucks.

      And I feel you, the wait for the developmental is 10 months. Ten freaking months. So I have to fight and battle and argue until he’s even evaluated.

      Though, word explosions come on hard. Crossing my fingers for Twee destroyer. 🙂

      • Yeah, the words are coming. Like a new word a day, repeating lots of sounds. My gut says nothing is wrong, other than stubborness or laziness.
        We could check with our benefits plan, it may be covered, but I’m not really that concerned…yet.

  4. Oh man, I so feel your pain. I’m still on pins and needles waiting to see if Stella can qualify for therapy via Blue Cross. I’ve called the neurologist. The pediatrician has called the neurologist. I’ve filled out so many damn forms that my hand is numb. And while the neurologist did not think Stella was autistic (whereas so many of the quacks that run our state’s Early Steps program did), she conceded we may have to call her autistic to qualify for therapy.
    At this point, they can call her a damn rooster if she gets the help she needs.
    It’s so bloody frustrating to have our kids be “impaired” but not “impaired enough.” It sounds like both of our kiddos will thrive and overcome many/all of their issues with QUALITY therapy. We had 9 months of free sing-songy therapy where they taught her how to identify objects for an hour a week. By the end, Stella was schooling the therapist on what is a rhombus vs a trapezoid.
    And I also agree that as their moms, we do know a thing or two. My kid is not autistic. Seriously. Nothing in those criteria ring true for her other than the semantic/pragmatic language difficulty.
    Sorry. Done ranting.

    • My pediatrician moved so I have this new, stupid one that doesn’t know Jp at all. I have no one in my corner anymore. It sucks. Though, I am hoping that the fact that she thinks he’s autistic may help insurance decide it’s necessary. Just crossing my fingers and waiting.

      I think Jp would have classified as PDD-NOS (autistic) before the changes. It’s just a dumping ground diagnosis for kids with delays like theirs: Communication, social delays…but without the repetitive behaviors (but the only thing that I wonder about is the verbal looping. Is that a repetitive behavior?). But now they say the repetitive behaviors are the hallmark of what autism is. He doesn’t seem to have any that I would say stand out. So I don’t think he will classify.

      But I just worry that he won’t get the help he needs and then will be thrust into a school system that he will struggle with. I worry about him being picked on, being awkward. I just worry. I know that I shouldn’t…but i do. 😦

      • I do know. FYI, our neurologist did say that she probably would have classified Stella as PDD-NOS if that were available. As she put it, “all the communication and social issues of autism without the autism.” I think to qualify, she had to change her original diagnosis of “language disorder” to “autism” to get us coverage. Again, I don’t care if they call her a rooster if it works.
        I’m choosing not to worry about the future (yet) as far as bullying, etc… goes. I am really thinking this early intervention will “fix” this for us. We may have some ADHD or something, but will otherwise be “normal.”

      • My worries aren’t of the far future “bullying” variety, really. Maybe you saw my Facebook post but yesterday at the store he wanted to say hi to a kid tat was maybe 4 but the same size. He just hung close to him and I smiled and waved at the mom. Then the kid saw Jp standing there but not really saying anything but looking at me and pointing to him. Then he told his mom that Jp was “weird” really loud.

        Jp doesn’t understand, of course, but I couldn’t help but be heartbroken for him. Then, when I tried to herd him away…he lost it.

        I just worry about the day he clues into that kind of stuff. It wasn’t the first time. 😦

      • They’ve blocked Facebook at the office (eye roll) so I miss a lot of stuff these days. Your story just breaks my heart.
        And what kind of douchebag parent would allow a roughly 4 year old to be so mean?!

      • She corrected him but it just made me sad. There is one other kid that is like Jp that I know of that is 16. He’s a smart kid -genius in math and science even- but he’s socially awkward. His mom says that he will tell her people are his friends and when she meets them at school functions they obviously aren’t and say mean things to him that he doesn’t “get”. With a difficulty with pragmatics, kids have a hard time understanding sarcasm and disingenuous speak. So he can’t tell they are picking on him.

        Which the bonus is that he doesn’t know…but that, I think, is one of my biggest worries even though I know he will master all of the language aspect. It’s silly…but when I see things like the other day it just brings those fears to the surface.

  5. I feel for you. I’m dealing with insurance companies all the time and they are denying my claims all the time. What is the point of paying for insurance when they don’t cover what you really need?! SO frustrating.

    The evaluations a whole other story. They said my kid is at 3-6 month level (he’s 2 years old) because apparently you can’t move to the next age range until all the boxes in the checklist for that age range are checked off. So he does things in all these age-ranges but because he hasn’t checked off ALL the checks he’s stuck at this 3-6 month level. Why can’t they fine tune these tests to figure out what exactly they’re at?! Ugh.

    Best of luck!

  6. Oy vey! What a headache! We have a really great team of therapists who are pretty good about going to bat for us when it comes to insurance. (We have BCBS too) Everything has been covered from the beginning. Our PT supervisor and ST are somewhat experts with Autism. We had a specialist try to say Brax was autistic, but failed to recognize he was without access to hearing or vision for almost a year which is why he failed that stupid M-CHAT. Anywho…I’m happy to help you get connected with people who can help! It sucks fighting insurance all by yourself. And don’t waste your time with the developmental pedi here in town (did they send you to Fasci?) Getting in with that office was a NIGHTMARE! And a ridiculously long wait. I know families who have had much better experiences with a developmental pedi in Temple and Houston. Feel free to e-mail/facebook me if I can help keep She-hulk and momma bear at bay! 😉

  7. Wow, I could have written this post as well. There is nothing more gut wrenching to a mom than those damn evaluations. I honestly feel like I hold my breath the whole entire time. It’s amazing I don’t just pass out. We live our lives in the gray area as well. No black and white here either.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: