The One Where I Didn't Cry

Today marked the day that I didn't cry at an evaluation review appointment. That's a milestone.

We had decided to do full neuropsychological testing to try and figure out why our son was still having some struggles at school and it was with a massive pile of nerves and anxiety that I went along today to review the findings with his psychologist.

What if she felt that autism did still fit?

What if he had massive cognitive impairments?

What if he had some other personality disorder, or something I totally wasn't expecting?

And...

It was helpful. Really helpful.

Our son has ADHD. He's struggled with attention and hyperactivity since he was little. It's the thing that's 'left over' from the autism. It's better than it was, but then of course he's older - more aware, more able to manage himself. But, it's there. He struggles with both attention and hyperactivity, as well as a little impulsivity too.

He also has dyslexia, which was a surprise, but, we were starting to have suspicions - he was still having letter reversals, cannot spell to save his life and cannot sound out words. His sight words are great though. Because that's how he's learned to read. By memory and recognition, not decoding.

Throw in some dysgraphia (yep - awful handwriting), some anxiety (well, who wouldn't be anxious when you can't pay attention and you are struggling to read) and yet more visual processing problems and you have the answer.

Here's where I was REALLY surprised though. A couple of nights ago his psychologist emailed me to clarify the situation and timing on his folate issues and Lyme Disease. This could've been for 2 reasons. Either she was simply writing the medical history for the preamble of the report, or, she had started to put things together that we also had. That they could be the root of the problem.

Today I got my answer. Yep, who would've ever thought it. She thinks that most of his symptoms could be from Lyme. She also thinks his developmental regression at 18 months was likely a result of impaired folate metabolism. I really think we found the Holy Grail of psychologists. I am in shock.

She doesn't think it was 'true autism', but another disorder that was presenting in such a way that a developmental pediatrician (who "didn't know what he was seeing" - direct quote) felt he met criteria for autism. So - did he ever have it? He met the diagnostic criteria though, so, he did, by that definition.
My question though? HOW MANY OTHER CHILDREN DON'T HAVE AUTISM? How many other children get therapy instead of folate supplements? That is something that should make everyone cry frankly. It's a criminal neglect of medical duty. And it's really fecking expensive. Our insurance paid over $100,000 for ABA therapy and would've saved over $99,000 of that amount if they would've just paid for his methyl folate, which we did, out of pocket.

Some other highlights, and I'm only going to share a few good ones for now.

- Our son is a storyteller - functioning at anything between a 6th and 9th grade level in these areas of sentence and essay composition and oral reading fluency. He is in 4th grade. Of note - his spelling is at a 2nd grade level. Quite a difference.

- In math - we've been taking him to Mathnasium to sure up his foundational skills as well as give him a little help in an area he had previously been struggling. Between addition, subtraction and multiplication subtests on the Wechsler Scale, his lowest grade equivalency was almost 6th grade, his highest was almost 10th grade. Holy moly.

Here's where we will struggle - he tests average. His uncorrected (ie performance) IQ is right in the middle of the bell curve - around 90. However - the main point of this testing was to figure out if his roadblocks are really affecting his performance, and, yes, indeed, they are, to the tune of over 20 points. His average score ups to an above average. So, there is a discrepancy in his actual achievement in some areas, when compared to his actual intelligence. Whether it is enough for school to help him out beyond accommodations remains to be seen, but, it's a start. We will definitely discuss our findings with them soon and what we can do for him within the school setting, because, it's clear, that right now - he is NOT getting an appropriate education, at least where his language arts are concerned.

And - it's DEFINITELY not autism. It's ADHD.

Our next steps -

- Try and find a tutor or online program to help with his reading skills - something specific to children with dyslexia.
- Continue with his cognitive behavioural therapy and neurofeedback.
- Look into some music lessons again - probably not violin again - but something, since music stimulates the same regions of the brain as those in which he has deficits. He mentioned the drums. I'll leave that there. Yikes.
- Work with school to support his reading instruction with qualified staff.
- Relook at vision therapy - he's due for a check anyway.

The big one?

FIGHT LYME. Time for a new herbal attack I think.... I do love an experiment.