Had his initial eval. A little overwhelmed.

OhSewCrafty · December 2014

I posted a while ago about concerns and whether to begin the evaluation process for my 4 year old, Charlie. Tuesday we met with the CAIU and got the ball rolling.

We met with a speech therapist, an occupational therapist, psychologist and another therapist/caseworker. The case worker interviewed me in a separate room while the other three worked with Charlie for about 2 hours. Afterwards, they all met privately and compared notes from my interview, his teacher's interview, and their observations, then met back with me. The good news is that we are very much all on the same page. The things we are seeing, they saw glimpses of and there were things we never realized that they pointed out. The psychologist explained that based on their evaluations, Charlie has moderate/significant delays in three areas: cognition, language, and sensory self regulation (?). He qualifies for services in these three areas and we will build an IEP once they can have a coordination meeting. She wants to evaluate him further for a possible spectrum diagnosis, so we're going back on December 18th for the ADOS. I'm thankful we don't need to wait too long for that.

Their main concern is that he's not fully understanding and processing what is going on around him, making for inconsistent communication and use of language. He is also delayed in play and where he should be socially. Most of his communication is rote memorization being spit back out, which is why our "conversations" don't make sense. He's not really processing what I'm saying to form a response. All of his obsession with letters and numbers is because it's constant, concrete, and comforting to him. They're also concerned with his lack of eye contact when he's conversing (or listening) and that he does not seem to respond to emotion being expressed to him. Something I never realized is that he doesn't seek attention from us in a "Mom! Mom! Look at what I'm doing!" way. You know, when they're doing something and they look back at you to see if you're looking. He doesn't share experiences or seek feedback from adults around him in that way.

They also saw a good bit of anxiety in him and serious problems transitioning from one activity to another - even from one part of the room to another. He doesn't melt down for long, but every step of the way is a struggle and that is definitely something we see at home.

Honestly, there was a lot more they said, but I couldn't remember it all. I tried taking notes, but it was so. much. information. I'm going to get a full write up mailed to me soon. I'm having trouble wrapping my mind around all of this. What could be causing these delays? Is it temporary? Is this a permanent thing he will always need therapy and specialized instruction for? I know we'll know more after the next evaluation, but I feel so lost in the meantime. Like, I know something is going on with him, but have no direction yet.

OhSewCrafty · December 2014

McRib said:

hugs momma. my son had very similar issues at 2.5. for us, it helped to look at medical stuff going on with him (iron, mineral deficiencies, malaborption, GI issues, underlying infections, food intolerances) with a MAPS doctor. I don't think anyone has a magic ball and can tell you what the future holds. I recommend getting as much therapy as you can and looking at the medial stuff as well so you hit it at both ends. That is what has worked for us.

Thank you. We've been looking into immune deficiency issues with him as of late (after recurrent infections and GI problems), so thankfully we're in the works for both sides of the coin.

As much as I (and any parent) would love it, I know there's no telling what will happen. My own anxieties just need to get over themselves and go with the flow, which will hopefully happen eventually.

bumpuser511563 · December 2014

Hugs.

typeset · December 2014

Big hugs to you. I hope your answers come soon.

greyt00 · December 2014

((Hugs))

OhSewCrafty · December 2014

-auntie- said:

OhSewCrafty said:
We met with a speech therapist, an occupational therapist, psychologist and another therapist/caseworker. The case worker interviewed me in a separate room while the other three worked with Charlie for about 2 hours. Afterwards, they all met privately and compared notes from my interview, his teacher's interview, and their observations, then met back with me.

Sounds like a very comprehensive eval for an IU setting. Strong work putting that together.

I had been setting up the appointment with the case worker and figured it would just be one person working with him to get the process started. I was pleasantly surprised to find so much in place when we got there.

The good news is that we are very much all on the same page. The things we are seeing, they saw glimpses of and there were things we never realized that they pointed out. The psychologist explained that based on their evaluations, Charlie has moderate/significant delays in three areas: cognition, language, and sensory self regulation (?). He qualifies for services in these three areas and we will build an IEP once they can have a coordination meeting. She wants to evaluate him further for a possible spectrum diagnosis, so we're going back on December 18th for the ADOS. I'm thankful we don't need to wait too long for that.

That must've been hard to hear. Like a few others have warned, go easy on yourself when you get the written report- seeing deficits laid out in percentiles, even when you are expecting them, can be a gut punch.

I expect the ADOS will bring more clarity. Much of what you're describing is what you would see in a child on spectrum, especially in the context of a speech delay and SPD.

I'm trying to hard not to read into things or god forbid Google anything at this point. I know the answers will come, but as you can imagine, I'm freaking out inside. It's one of the busy times of year at work and I cannot focus for anything.

Their main concern is that he's not fully understanding and processing what is going on around him, making for inconsistent communication and use of language. He is also delayed in play and where he should be socially.
In the context of ASD, this makes sense. Autism is a delay in social and emotional maturity. Most kids with ASD operate at about 1/2 their chronological age. Since the gap is a percentage, it's something that gets bigger over time as peers develop more skills. Given the age difference between your children, you would expect his NT sister to surpass him in these areas in the next year or so if your son is on spectrum.
She's already doing things that we never remember him doing regarding pretend play, how she communicates, and how she reacts to other children and their emotions. Could easily be the fact that all children are different, so we're trying not to read into it too much, but...we see it none the less.
Most of his communication is rote memorization being spit back out, which is why our "conversations" don't make sense.
Sometimes verbal kids on spectrum monologue about things that matter to them without participating in the give and take of fluid conversation. They talk at you. Because kids with ASD don't get that you have different thoughts (poor ToM), they sometimes don't get that you don't have all the background information to provide context to their schpiels. Other times they use memorized dialog from other sources rather than spontaneous speech. This can really be subtle.
We started to notice recently that he quotes movies and books quite a bit. We thought it was just a kid thing until we realized he wasn't doing it to be playful or funny, but that's how he was talking to us. I didn't realize just how little he actually conversed with us, if ever, until it was pointed out.
He's not really processing what I'm saying to form a response. All of his obsession with letters and numbers is because it's constant, concrete, and comforting to him.
This sounds like classic ASD perseverative behavior. In the diagnostic criteria, this would be a repetitive or restricted interest. Some people call these a "special interest".
They're also concerned with his lack of eye contact when he's conversing (or listening) and that he does not seem to respond to emotion being expressed to him.

These are concerns. Especially the inability to read nonverbal communication that is over half the content of any face to face verbal exchange.
It's interesting. It's like he can recognize emotion as a factual thing (she's crying, he's smiling, etc.), but if he takes something from my daughter and she starts crying, he doesn't really react to it. He knows the "answer," but doesn't seem to act accordingly, if that makes sense.
Something I never realized is that he doesn't seek attention from us in a "Mom! Mom! Look at what I'm doing!" way. You know, when they're doing something and they look back at you to see if you're looking. He doesn't share experiences or seek feedback from adults around him in that way.
Another red flag.
They also saw a good bit of anxiety in him and serious problems transitioning from one activity to another - even from one part of the room to another. He doesn't melt down for long, but every step of the way is a struggle and that is definitely something we see at home.
Meltdowns are super-common among kids on spectrum, but they are part of the diagnostic criteria. DS has never had meltdowns. Anxiety drives the bus here; DS finally got a GAD dx added to his ASD/ADHD, Specific LD when he was about 18.
Between my family and my husband's family, he's got to be pretty genetically predisposed to anxiety as it is, but I never realized that it could be part of a developmental/spectrum thing. Charlie's melt downs have never looked like tantrums, they've always looked like tiny panic attacks (breathing, white knuckle grip, repeating himself, etc) so their observation makes sense.
Honestly, there was a lot more they said, but I couldn't remember it all. I tried taking notes, but it was so. much. information.
I know. It's like your heart and your brain collide and you just can't process what's being said.
I'm going to get a full write up mailed to me soon. I'm having trouble wrapping my mind around all of this.
I'm sure. It takes some time to get to a place where you can be ok. The unanswered questions are very difficult to live with.
What could be causing these delays?
Hopefully you'll have some answers soon. It sounds like they are considering ASD.
Is it temporary?
If it's ASD, probably not. There do seem to be some small percentage of kids who are identified very young who seem to grow out of their dx with intensive therapy. They don't end up fully typical, mostly they're sort of quirky and perhaps have residual mood or behavior issues.
Is this a permanent thing he will always need therapy and specialized instruction for?
Hard to say. My DS got a lot of therapy upfront and did get special education services therough graduation at 18. He's a college junior who works part time on the weekends at his special interest. These days he's more of a Mac in a PC world, he's on a similar trajectory as his peers, but maturing at a significantly slower rate.
I know we'll know more after the next evaluation, but I feel so lost in the meantime. Like, I know something is going on with him, but have no direction yet.
I hope you get more answers and a clear path to helping him sooner rather than later. It may take some time to know where he'll end up; I'm still not certain DS will be fully independent at 22- maybe 30 is more realistic for him.
Good luck. You can always come here when you need someone who gets it.

Thank you for the kind words and info. I feel like I've been stuck in a loop the past few days of thinking about it, then trying not to think about it, then being okay with it because nothing has physically changed - we just have more info....back to dazing off into "what if" land.

I think I need to spend some time with him. Since Tuesday, I've worked three 14 hour days and have hardly seen him. I need to spend time with him to remind myself that he's perfect no matter what else is going on.

OhSewCrafty · December 2014

Thank you all for the support.

Junebug060609 · December 2014

Auntie said a lot of what I was thinking as I read your post. I just want to give you a hug. The knowing something is up but not knowing what stage is so hard. I'll echo the others with reading the report. With DSs reports I've learned to not open them until I'm in a good headspace. I hope you get some answers and guidance at the appt later this month. Great they got you guys in so quickly!

veggieroll · December 2014

It is frustrating just not knowing what's going on, but at least you're getting closer to hopefully finding out. Hugs.

Had his initial eval. A little overwhelmed.

Re: Had his initial eval. A little overwhelmed.

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