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.

Apologies

So, this article has been recently making the rounds on social media, and, well, I just love it.

It is such a true observation of how so many of us behave. We apologize for everything.

As a native Brit, it’s even worse. I have caught myself apologizing for opening a door for someone. We are always apologizing for something – maybe it’s colonialism, or the fact that we aren’t generally warm and fuzzy people, or even that people can’t understand the version of English that we speak. That being, um, English.

But – this strikes deeper for me personally, even beyond my cultural foundation.

I have spent the past 10 years, since my fabulous little one just celebrated double digits yesterday, apologizing. For him. For his behavior. For him not understanding an explanation. For him not being able to pay attention in class. For him having food allergies. Basically for all of the things that he can’t do a thing about. Things that are not his fault. He would change it in a heartbeat – so would I. But, they are a work in progress. 

Here’s an example –

“I’m so sorry (he) was a distraction for the other children”. What does this say? That I have maybe validated the person’s feelings of annoyance and irritation at him? 

What if I would have said “thank you so much for your patience with him, he had a great time”. This is much better. It actually expresses the gratitude instead of trying to minimize the disruption. It makes people feel valued instead of put out.

So, today – no more. I will not start with an apology, unless that thing was intentional. Our son has made so much progress and continues to do so, from his autism diagnosis at 2, to his recovery at 9. Why should I apologize for that? I am thankful for the kindness and patience shown to him and I appreciate it more than I can express, but I can at least try.

Then turning this back towards myself. I routinely apologize for myself. For my parenting. For my choices. For my feelings. For my lack of feelings. For my need for boundaries. But – when I think about it, I am not sorry. I am glad we made the parenting choices we did – they worked. They were successful in recovering our son from autism.

Relationships are a struggle sometimes, both family and friends. I have friends that disagree with many of my opinions, which really is fine! We are each entitled to our own opinion, but that’s what they are – opinions, not facts. Opinions shaped by experiences, which of course are different. Where true friendship lies is where the opinions can be vastly different, but the discussion interested and honest, and the friendship endures. In those true friendships, I don’t apologize for my opinions and have never felt the need to.

Where I have struggled in the past is in those relationships that are not formed based on genuine growth together and respect, but on assumption of familiarity. I am not someone to give respect where it hasn’t been earned. And you know what? That’s ok. I shouldn’t apologize for requiring my affection and respect to be earned. But I can be thankful when it is.

The biggest thing we can all do is to own ourselves and our needs. Be honest as to how you feel. Do not apologize for those feelings, but, appreciate it all the more when people take the time to understand.