Re-Evaluation Jitters

We are finally at the point, just over 7 years post-diagnosis where we feel the time is right for a review of that diagnosis.
Our son has made so much progress over the years - he's grown in so many ways and so many of those things that firmly placed him on the autism spectrum are no longer an issue.

And that's primarily why we are pursuing a new evaluation.

I won't be coy about it though. I don't like psychologists, or developmental pediatricians, or the likes. I find them rude and condescending. I find their bedside manner lacking. I even question some of their worth in the medical field to be honest. This whole process has sent me into an anxious tailspin.

The appt we have this week starts the process. I am thankful they didn't give me a stack of paperwork to complete, where I am forced (for what seems like the 500th time) to relive all of the trauma of parenting a child who was diagnosed with classic autism at 2 years of age. To have to write what he didn't do when he should have. To list the things he still struggles with. To list areas of concern.

At least I am thankful for the recommendation we've received for this provider. We've heard great reports of his practice from multiple families. He's apparently 'biomed-friendly', which is a very big deal to me. I credit our biomedical interventions for returning our son to the state of health where his therapeutic interventions have been able to have an effect.

Why are we re-evaluating though? Isn't autism a 'lifelong neurological condition'? Well, that's the thing. Right now our son has that diagnosis, and whilst I don't dispute there are still some differences, we've been told by many people that they don't feel that autism is the right descriptor for him. And we agree with them.

He struggles with attention and we see some anxiety. We also still see some expressive/receptive language delay, especially with complex instructions, but, our speech and language testing places him on the bell curve in these areas. Academically, honestly, I can say he's not the sharpest tool in the box. He is average. He is better in some areas than others. We are also still working on his visual skills, because, his eyes and their inability to get along and play nicely together have made the whole process of learning to read a struggle, but, we are seeing progress in this area too, and, again, he's on the bell curve.

So, whilst he might not be 'neurotypical', (whatever that means), we are not sure he technically qualifies for an autism diagnosis anymore. If he does, so be it. He will be re-assessed to DSM 5, the newer standard, so it will be good to at least get an update as to where he is. If he no longer meets criteria, then, it's more appropriate to alter his diagnosis to something that is accurate and can help him and our understanding of appropriate interventions.

Just trying to stay calm for whatever we hear...

Vaxxed!

Well, after the DeNiro issue and TriBeca etc etc, Vaxxed has managed to get showings around the country.
I for one am going to go and see it.

As a scientist, the thought of research fraud (which is what it is when you omit data to hide a result you don't like) is unacceptable.
When it involves children's health, it's even worse.
As a parent to a child with autism, that regressed in development, it's blood-chilling.

So, this mama bear scientist is going to Denver next week to see it. And I know I'll need tissues.

Want info?

https://www.landmarktheatres.com/denver/esquire-theatre/film-info/vaxxed-from-cover-up-to-catastrophe

It Really Is A Light (And Not A Train)!

Our son's IEP triennial meeting is on Thursday, and we have never done a pre-meeting before. We have always had very straightforward meetings and I always felt confident that our team had my son's best interests at heart. They truly love my little guy at his school and he has progressed steadily with their help. So, it kind of threw me off yesterday when I got an email from our IEP team lead saying they wanted a pre-meeting.

So, today I went in for the afore-mentioned meeting and the team basically wanted to not spring on me on Thursday that according to their testing, my little one (even though he's getting taller each minute it seems) no longer qualifies for an IEP.

What?!!

Basically, although there are some differences from a psychological standpoint, such as attention, impulsivity and  anxiety, none of these are considered debilitating enough that he qualifies for special education services. So, his IEP will not be renewed at our meeting on Thursday, instead, he will transition to a 504 plan. This will still provide additional help for him in areas of academic weakness, through the Response to Intervention system and it will still provide social services via the school counselor, but, technically, from a school performance standpoint, he is 'within range' in the majority of areas of his peers.
There will be monitoring during and after the transition, but, it looks as though his time under the special education umbrella is at an end.

Add to this little meeting of joy the fact that the school district autism specialist doesn't think DSM criteria for ASD at all describes him, so, maybe, just maybe, it's time to look at a re-evaluation. We are 7 years into this journey, which at times has been hell, and I cannot believe we actually could be almost at the end of the big stuff. The funny thing was that she suggested that maybe he was incorrectly diagnosed at such a young age. I corrected her on that one - he met criteria and then some. His diagnosis may have been heartbreaking, but he met the criteria, to the point where the developmental pediatrician didn't even need to finish the assessments. I think we are finally at the point where we can call a spade a spade and refer to 'recovery'.

I am so thankful for how far he has come. Everyday he just amazes me. Here's to continued hard work and even more progress.

Updates!

One of the brand new pendants in my little store!

Well, it's been a while since I updated this blog. What's been going on? Lots. Always lots!

How is our little guy doing? Well - really well! We managed to get through his hockey season, where, he didn't make the team. He had fun. He worked hard. He's excited to move up to the U10 Division (Squirts) in the fall. Who knows whether he will make a team, but, he wants it and is also wanting to do the summer program they run at his hockey club, so we're obliging and signing him up.
He continues to grow and develop.

Celebrating a goal like his hero - Patrick Kane

One big thing we're tackling at the moment is his vision. He sees 20/20. In each eye. And together. However - those gorgeous peepers of his don't work together as a team. They are totally independent, which means he has really poor depth perception, no ability to see 3D movies (I know - a vital life skill) and his tracking for reading was terrible. It totally explains some of the issues with reading speed and accuracy he was encountering. He was also experiencing intermittent exotropia - where one of his eyes would fly off to the outside to 'reset' itself.
What's the fix for this? Vision Therapy. It's expensive. It's not covered by insurance. Surprise surprise. We're doing it anyway. He needs this and badly. After a few months we're already seeing gains and his eyes are tracking so much better than they were. He is able to follow along reading passages and pages. It's exciting to see the progress in a few short months. At least vision therapy isn't a lifelong or even semi-long term thing. It's a few months of appointments weekly and limited homework. It's doable.
Poor visual skills can manifest in difficulty reading and paying attention, hardly surprising when the poor kid's brain is frazzled from working two independent eyes instead of a unit of two.

In other news, he finally tested in the 'normal' range in a speech evaluation. This doesn't mean that his speech and language skills are the same as his peers, but it does mean that we are making great progress. Now we concentrate on those subtle things - how to read people and their language, how to improve conversation. We've reduced speech hours from twice to once per week, and picked up a tennis lesson instead. So nice to finally be reducing therapy hours and increasing fun things!

We've also reduced occupational therapy to once per week - concentrating on visual exercises to compliment the vision therapy, as well as continuing to work on handwriting.

Biologically and medically, things seem stable. Aside from an allergic reaction (that of course skin testing couldn't replicate) to an antibiotic, all has been 'normal'. We continue to supplement where he has problems (low zinc, vit D, impaired folate metabolism), but, he is growing like a weed and always looks healthy.

So, that's where we are!! We have a 9 year old that is thriving. Autism Awareness Day is a day of reflection for us - where we are, where we've been. And we've been to dark places, but, there IS light at the end of the tunnel. Maybe we're already out. I'm not sure.

Every child is different and should be accepted for that. Some have diagnoses, some don't, some have challenges that are bigger than those other children and families experience. But - no child is 'perfect'. No child will have the perfect charmed life.

I try to see that what we've overcome as a family has made us stronger, more willing to consider alternative explanations, more savvy to the world and more knowledgeable about health and wellness.

So, whether you consider today to be Autism Awareness Day, Autism Action Day, or Autism is an Arse Day, be kind to yourself and look at the positives. Make it the day that you decide to change something - whether it be a therapist that isn't a great fit, or seeing a MAPS doctor, or just trying something new - go for a family hike, eat out together, give extra cuddles and watch a movie.

Use it as a day to not celebrate a DSM diagnosis, but your family and the love you have for each other.

The One Where He Didn't Make The Team

Yes, that has been the big drama of the week. My son didn't make the advanced hockey team he wanted to. Big deal right? #firstworldproblems and all.....

He worked his tail off all summer, I could see the strain on his face as he battled against himself when he couldn't pay attention, or stand still, or show that focus that he needs so badly. He didn't make the team. He's as good as so many other kids who did. Better than others. Yet, he didn't make it.

He was upset. We were upset. I could blame the program for not working on the foundational skills that were some of the reason he came up a little short, but, at the end of the day, my son just doesn't "want" it as badly as the other kids, or rather, he can't keep his squirly self focussed long enough to show others he does. And that is where I feel that he just missed it.

We're trying to focus on the positives of this situation though. Want to hear what great lessons one can learn from not making the team?

- It will help him decide if he wants it enough to keep trying. To keep going, learning, skating. If he wants it, he will develop even more determination. He might even battle and win with his inattention.

- If anyone had told us at the age of 2 when he was diagnosed with classic autism at a moderate to severe level that he would be in with a hope in hell of making an advanced age 8 hockey team, we wouldn't have believed it. He has come SO far. We are incredibly proud, and sometimes when your kid makes so much progress, you can't help glimpse at life as maybe it could be. Those glimpses keep us trucking on.

- He will get to play this season anyway, and even better, with a couple of kids who are his friends from last season. They are fabulous kids who genuinely love him, with parents we like. He will have a blast with them. It will also be a lower pressure environment for him, so that maybe we can nurture that motivation that has been lacking, sadly, I think from the years of ABA he's had.

- We get to not have to play 'Keeping up with the Jones' ' this season, with some of the other hockey parents that are a lot to deal with. They are hardcore. They are intense. They are determined their children will make the NHL, or at the least, they will play college hockey. Come hell or high water. That is a relief for us. We are just not that kind of people. Sometimes I wish we were able to be, but, autism comes into your life and pretty much takes that away. Yes, it makes me sad, but at the same time, achievements that others take for granted - a meaningful conversation, your child finally connecting, those become so clear and grounding. And important. So important.

- We are going to work on his skating skills as a foundation, but in a different environment, where he can learn and progress in a much slower paced setting - more individual, more attention for him.

-  We've had our setback. It's OK. We all lived. Now, if he decides he wants to play Squirts (U10) and doesn't make a team, it won't be the end of the world. He will have those tools to accept and try something else, or to try and keep trying until he succeeds, or doesn't and either way, he'll be ok.


Life goes on and it's just a game. And sometimes the lessons you learn from not making the team are as important as the ones you do by doing so. Now he gets to play anyway, for fun. Isn't that the way life should be? Play for the love of the game.

Finding A Place

Having a child with autism grants you a place in that community. There are many different camps within the autism community and many different personalities within each camp. We have been firmly in the recovery camp, that is, I believe there is a biological basis for the symptoms collectively described as ‘autism’. I further believe that those symptoms are a reflection of a body that has lost the balance of health – where there are odd immunological responses to what should be benign substances. I don’t know what causes this. I also think that the cause can be different for each child. This, in my mind at least, is one possible explanation for why some children, supposedly with the same disorder, present so differently. Autism is a very loose diagnosis once you realize what is missing from the diagnostic criteria and it has become more so with the adoption of the DSM 5.

Anyway, once you’ve chosen your camp, what then? Well, in our case, we have worked towards recovery and we’re almost there.

Our son doesn’t have –

Repetitive behaviours

Insistence on sameness or routine

Sensory issues

‘Meltdowns’

Avoidance of social interaction

He still struggles with the finer points of verbal interactions and he does love to talk on the subject of his choosing, but, this, I have no doubt will also improve. He demonstrated great use of sarcasm the other day with my sister. He has friends and loves to be with other children. He doesn’t care if our schedule deviates from what he was told. All of those core autism symptoms are pretty much gone.

We are thrilled with his progress. More than thrilled. But, it puts us in no man’s land.

I cannot identify with families with children with autism anymore. Those families who are still dealing with so much. They have sensory issues, meltdowns, behaviours that we’ve never seen. I find myself getting further and further away from it.

I feel like a fraud in these groups. It feels wrong. I feel out of place.

Being an autism parent though and having gone through what we have, I also don’t fit in the typical camp. Our son does have differences. My parenting experience has been so vastly different to those parents that I feel like a fish out of water. My experience on this journey has taught me so much, but at the same time, I cannot unlearn what I have acquired. I can no longer trust our government scientists. I will never be able to vaccinate my son as if none of this had ever happened. I cannot go back. Nor can I ever switch off my ridiculously alert state. I am constantly on watch watching for children who are unkind or bullying – those that notice that our son still has some differences and move to exploit them. Sadly, there are some children who are so politically adept even at a young age that they will.

Visiting with friends from my college days has reaffirmed how different we all are. Some of them are so blissfully ignorant of anything we have experienced. Not that I would wish any of this on them for a second, but, I rather wish I could acquire a memory charm and forget it all. I wish I didn’t even have to consider how the pharmaceutical industry is a nasty, toxic lobbying giant buying off our elected representatives to mandate us buying their products. I wish I could go back to that camp where I didn’t have any reason to question their ‘life-saving’ role in medicine.

When is the government going to start acknowledging that these children are actually sick? When are they going to do some real research into biological mechanisms for both development and reversal of autism? When are they going to realize that caring for these children is going to break their precious budgets.

I also am incredulous at the so called neurodiversity movement. Frankly, the self-advocates out there only represent themselves. They are happy (although in so many cases barely functional on a social level) and good for them. But, to represent that no-one should have access to therapy because they don’t want it is absurd and of course indicative of a complete inability to see another perspective, a core feature of Aspergers. So, not surprising really.

Anyway, back to our strange reality. We are lucky to have friends with children who have some quirks themselves, not enough to qualify for a diagnosis, but, this experience has awoken these parents to understand our situation in a way that autism parents who stick to the book for their approach or those with neurotypical children can never do.

But, this situation is a lonely one. We have friends and family with neurotypical children that will never understand the heartbreak we have suffered, the worry we’ve endured, the work we’ve done. There are many of our son’s friend’s parents who simply don’t know about his history – nor will we disclose it until we’re absolutely sure it won’t affect their relationship with him or us. We also have friends with children who are so severely affected that it feels wrong for us to claim the same diagnosis. Our children are so different. At least though, we have an empathy for their experience that those with unaffected children simply don’t have. Not because they’re callous, but because they just haven’t experienced it. They’ve never had to try and comfort a friend who has so many things on their plate that they just can’t face the world. They’ve never had to try and find the words to express their sorrow when a friend loses a child. They never feel the dread of hearing about another wandering death in the autism community, knowing that there are at least 20 friends that could experience this tragedy first hand if they let their guard down for a second.

Oh for a place to call our own. 

Who To Support?

I get asked a lot about which charities are worthwhile to support during Autism Awareness Month.

Here's the first point - NOT Autism Speaks. They simply don't put enough of their vast funds raised into family support. Don't buy a blue light bulb. Don't donate to them. If they can pay their President (base salary over $370,000) a similar amount to what the President of the United States ($400,000) earns (they do), they simply don't need your money. Don't fool yourself into thinking you are doing anything for autism awareness or action by giving anything to them. You're not.

My first advice is to find an organization that is local to you. Find a non-profit that makes a difference in your own community.

Orgs in Colorado include -

Colorado Springs Therapeutic Riding Center
Pikes Peak Therapeutic Riding Center
Breckenridge Outdoor Education Center
Alpine Autism Center
PlayDate Behavioural Interventions
SPD Foundation


National Orgs I like -

Generation Rescue
National Autism Association
Safeminds
TeamTMR

Any of these organizations are worthwhile. They actually help families, which is more than a lightbulb will ever do.