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.  

New Facebook Page!

So, today marks a new milestone. A Facebook page for the blog!

For several years I ran the AMFAS (American Military Families Autism Support) FB page and I loved the interaction there, but, after our son lost his diagnosis and we retired as a military family, it felt like the right time to hand it over to those who would serve the group better.

There are so many aspects to our journey so far.

Autism and recovery from autism.
Lyme disease.
Folate metabolism and autoantibodies.
Health.
Food.
Food allergies.
Lifestyle.
Military life and moving.
Education.
Special education.
Sports.
Hobbies.
Therapies - of every type under the sun.
Sanity - primarily the preservation of mine.
Marriage - how to keep it together, strengthen it, be a true team.
Friends.

That's probably just a snippet. So many things to juggle and always something new coming down the pipeline. Much though I would love to think I know everything, I don't. Not even a fraction of what I wish I did. So, the page is a great idea to bring together people and information and great discussion.

As I'm sure many people already realise, I am not someone to sit idly by and accept things, so I'm always looking for answers. For a better way, a calmer place, for more knowledge. Let this be the start.

One Step Forward, One Step Back and Onwards We Go.

Back and forth, back and forth - that's how life has felt for a while, but, just when you feel like you have some stuff figured out, something else rears its head.

Since the summer, we've had a sense of relief. Our son officially lost his autism diagnosis - something we have worked on for over 7 years. We decided though, to start working with a psychologist and therapist to work on some cognitive behavioural things to try and help him get a handle on some remaining issues.

We've known since he was very young that he has attention and hyperactivity issues. He never sits still and has the hardest time paying attention to anything that is not in his sphere of interest.

Putting him in hockey was the best thing we ever did - he loves it and it gives him the most amazing input and discipline - it's honestly the best therapy I can point to.

But - he is struggling in school. He's struggled to learn to read - not helped by his inability to track with his eyes. He's struggled to spell. Struggled to pay attention to classroom instruction. He also struggles with confidence and is starting to show signs of depression because he's acutely aware of how much he's struggling with all the other stuff. And my heart aches so badly for him. He's never had a moment of peace it seems. There is always a problem, always a therapy, always a mountain to climb.

After the worst testing experience a few years ago, I swore off all types of testing - it was that bad. Now though, we know we have to identify the problems he's having, so we are in the middle of the most comprehensive testing we've ever done. It's looking at everything. Attention, visual processing, executive function, anxiety and depression, memory, etc etc. You name it, we're testing around it.
After losing such a major label, I am in no hurry to burden him with any more, but, after losing his IEP this Spring, we needed to figure out if he truly doesn't need it, or, if their testing was just not comprehensive and thorough enough to identify why he is still struggling.

I talked with kiddo the other night and he explained how he's feeling so clearly - and in minecraft terms no less. He explained that it feels like he's in a maze - there are walls everywhere and he can''t find a way around them, nor can he break through them. I explained what the testing we are doing right now is trying to figure out - which walls we can break through, and which ones we are going to have to find a way around, climb over, or literally chip away at, but there might be many walls, or there might be a few, and some may be wood (easy to break through), or some might be obsidian (need to chip away at or go around somehow). He said he would probably need a diamond pickaxe.
Here's the odd thing though. We've never really discussed "autism" with him. We never felt the need to - we just used to put things in terms of challenges - how some things were harder for him, or that he did some things later and we needed to help him fill in those gaps. But - as we were discussing this, he said that he had a diamond pickaxe when he was little, but he thinks he wore it out and it's time to make a new one. Insightful little one.

We know he is going to show attention problems, but the rest is still a mystery right now, although, I would not be a bit surprised if he also identifies as having dyslexia too, at least if the tester's hunch is right after 2/3 of the testing.
Oh that we might figure this out and get him back on the track of control and progress....

And I console myself - at least he's a nice kid, not an arsehole. After all, there's no therapy for that. :)

Where Are You In Your Autism Journey?

Today, I had an acquaintance contact me and another mutual friend. It was to introduce another parent who had a child with autism, in the hope that we might be able to offer some wisdom etc...
My other friend did a solely therapeutic route - her son is doing very well, but still has a diagnosis (barely). Her son is engaged, funny and bright. She has done a wonderful job in both meeting her son's needs and advocating for him and I respect her immensely.
I on the other hand, took a biomedical and therapy route. It worked well for us, but there is no guarantee that every child would do as well using an identical protocol. Our son had specific needs, which we tried our best to meet.

Here's one thing though that helped enormously. I met and bonded with some girls who were at the same stage I was. We all had preschool-aged children, all of which had been diagnosed on the autism spectrum. I needed that. They needed that. We are still good friends. Our children are all doing well, regardless of which approach we took - because we all took the approach that fit our child best. One of these girls is my mutual friend referred to above.

The new parent we were introduced to is not at the same stage we are and whilst I like to share that vision for hope for her child, I am just not in that place anymore. I cannot hand hold. I cannot guide her through, nor do I think that would be the best thing for her.

Autism is a journey. You learn and grow with your child as you both travel it. From a medical standpoint, it's like peeling an onion. Things show at different stages, and as some things are addressed, others become apparent. If you try to fix everything at once, it just doesn't work - you don't know what's working and what isn't.

From where we are now, the best advice I can offer is to read and find a buddy (or two). It sounds a little mean maybe, but, it's the starting point. We all need friends. We need to know we're not alone in something, especially something as big as autism. But, we must travel that journey ourselves, someone else cannot do it for you.

The One Where He MADE The Team!!!

So, remember this time last year, when our little guy didn't make the U8 hockey team he was hoping to?

Well, fast forward to this past weekend, when, yet again, it was tryout time. This year he's moving up to the U10 division.

And...

He made it! He did even better than he was hoping to. He was hoping to make a travel team, and his organization has 3 levels, A, B and C. He made the B team!

He was the only kiddo who played at the intermediate level last year to do so.

We are so so proud of him. He was so disappointed last year, but, rallied well. He played and practiced so hard, constantly looking for improvement.

As a parent, I am thrilled, not just because he's made great improvements, but, because of all the reasons we quoted last year, and especially these two.

- He didn't let a setback turn him away from something he loved. He worked harder.
- He learned that amazingly motivating lesson of hard work paying off.

This year, he's also on a team with some of his friends, and other nice kids in the program.

Yay! One proud mum.

"Definitely Not Autism", Neurofeedback and The Listening Program

A few months ago, our son 'lost' his diagnosis, that is to say that he no longer meets the diagnostic criteria for autism spectrum disorder. I'm not sure why, but after hearing so many heartbreaking things over the years, even though I believed it, you always want to hear someone else say this. As if somehow it might be wrong, and he might still have it.

Anyway, part of the recommendations from the first psychologist we saw was to look into neurofeedback as a way of 'cleaning things up', and he recommended another local psychologist that does this. So, after finishing up a final run of "The Listening Program" (which I will discuss further down), I made an appointment.

Yay! Happy to report that she also doesn't see any way that he meets the criteria for diagnosis with ASD. So, that's good. He is indeed recovered. Officially.

There are still a few areas that he has some differences, or quirks though, which is where we will go next.

Onto neurofeedback. Our new provider couples it with cognitive behavioural therapy and other various therapeutic activities and what a fascinating approach it is.
For the first time we see brain activity in our son. He is lower in areas he should be higher, and higher in areas he should be lower, which contributes to hyperactivity and impulse control, and anxiety issues. I am excited to see where this can help him.

I will definitely update as we go on this.

Now, "The Listening Program". We've done this several times over the years, since our son has been small. I can now, with certainty say that it hasn't helped at all. I was lucky enough to have been given a copy of the discs by a friend years ago, and I've done the program several times to check if it was effective. We never saw anything with our son when he was smaller, so I held off doing it again until he was a little older, in the hope that when he was older, he might benefit more if he were mindfully listening to it. And no. Nothing. I have heard (although don't directly know) people say it has helped, but, not our son. I will be passing on our discs to someone else in the hope that it might help their child.