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.

What Are Your Goals?

Our goal was always to recover our son, and my definition of "recovery" is that he would no longer qualify for an autism diagnosis. We have achieved that goal. Now what?!

He still has areas that need work. Just because he is considered 'neurotypical', that is, he doesn't meet criteria for an ASD diagnosis, it doesn't mean that he has no barriers to learning, attention and focus. They remain problem areas. It may even be that he qualifies for some sort of ADHD diagnosis, although, I will probably ask his psychologist to hold off on applying any form of diagnosis until we have completed some neurofeedback, as recommended, as well as finishing his scheduled vision therapy.

It's been an interesting few weeks. I am having to be very careful in what I read, and what I respond to, because, I am elated as to our result in this autism experience. I know that, for our son at least, recovery was possible. If I had listened to our diagnosing developmental pediatrician all those years ago, it wouldn't have happened.

Does that mean that recovery is possible for all children? No. I don't think it is. I don't want to be a wet blanket, but, I think that kids who present with symptoms that can result in an autism diagnosis are all so different, and those differences have led me to the conclusion that there are probably multiple conditions that can lead to the diagnosis.

Are some genetic?
Yes - probably. You see families with multiple children with autism in them, especially where there are multiple generations of Aspergers. There is also fragile x to consider. A new study was recently published detailing some of the contributing genetic markers to autism, or what they think are.

Are some from vaccination injuries?
Yes - probably. Courts have ruled this around the world, and with more data being published all the time as to the immune response and social interaction, frankly, unless you were utterly unaware of what a vaccine is designed to do, then this is the most obvious probably in the world. If a vaccine can stimulate the immune system and can damage the brain in some children, and the immune system can affect the brain, which then can affect social interaction then it's a very big YES. For some children.

Can infections and viruses cause regression into autism?
Yes - probably. See above. If a vaccine can do it, so an any other insult to the immune system.

Is recovery really possible?
Yes. We are proof of it.

But - is it possible for all?
No. Why not? Because, in some cases, like ours, it's possible to reverse the biological conditions that set up our son's brain to mis-wire. We normalized his biology as much as we were able, calmed the immune and mitochondrial storm that was happening, then used various therapies to re-wire neural connections and rebuild the developmental skills he missed whilst opening and closing doors for hours on end.
Some kids are really sick and it's not always easy to heal their bodies past the point of damage. Sometimes they may have seizures, which continue to damage the brain, and thus wreck havoc on progress being achieved through therapies. Some children constantly gain skills and lose them.

Does this mean that trying to recover a child is not worth the effort? Absolutely not.
You may just have one like ours - that it can be done. And if you don't? You still have a child that is yours - and more precious than anything in the world. If our son hadn't have lost his diagnosis, it would've changed nothing for us - he is still the most amazing child to us - loved, valued and has a ton to contribute to the world.

I get sad when I read comments about recovery from other parents saying that they don't believe it, or  their doctor told them it's not possible. Always shoot for the stars, because, even if you don't get there, you may reach the moon.

Thoughts on Recovery

Well, I promised I would write more about this when I had collected my thoughts. I can't say they're totally together yet, but, I wanted to at least try and put down in words some of what I'm feeling, post re-evaluation appointment.

I honestly wasn't expecting our son to technically lose his diagnosis at this first appointment. I thought the psychologist would want to do more testing and assessment, but, I could tell from when we entered the room that it was set up in a specific way to observe my son.
There were various 'toys' (3D maze balls, pin boards etc), so that he could see his unscripted interaction.
We explained where we were - that basically, our son had received  his diagnosis at the age of 2, and that he was now at a point where he no longer qualified for special education services, he was skilling/testing out of speech and occupational therapy eligibility and that numerous professionals had told us that they just weren't seeing autism in their interactions and observations of him. That's not to say they didn't see other issues - some remaining attentional and anxiety issues, but, they just didn't see autism. Given this, we wanted to see if this really was the case - does he meet diagnostic criteria for autism, or not?

After our appointment, where we discussed various issues, experiences, interventions, and where the psychologist himself talked with him, we asked what he thought.

We were pretty surprised with the answer. Our son, in his opinion, didn't meet ANY criteria for autism. He said that he could see there were still a couple of little things that needed some 'tidying up', such as attention and focus, but, those could be addressed with neurofeedback - a therapy he recommended we look into.

So - we have recovery. Our son no longer meets diagnostic criteria for autism.

There are those who will insist that autism is lifelong, and those, like myself that view it based on its actual diagnostic criteria, in much the same was as other DSM diagnosed conditions, such as depression. The absence of the symptoms means the disorder is not present. And that's where we are.

I no longer have a child with autism.

I am no longer an 'autism parent'.

So, where do we go from here? Well, this, for me, feels like we get a do-over. We need to be mindful of the demands we put on our son, especially with respect to our expectations. He may no longer have autism, but, he has still walked a very long and stressful journey.
But, and this is a large but, he no longer has that label. He is no longer a special needs child. He no longer has a disability. He gets to live a normal life from here on. He is about to do his last speech and occupational therapy appointments next week, then, vision therapy will be the only therapy we will have on our schedule, and that should be wrapping up in the next few months.

I want to explore a couple of other things to help him with focus and concentration.

1 - We restarted The Listening Program. I've done it before with him, years ago, and honestly, it didn't really help that much. I wonder though if he was just too young. Now, we are doing it again, to give it one final try. We have 5 weeks left and will then assess if it has been of any benefit.

2 - We want to try neurofeedback. I am hopeful it can help with optimization, as recommended by his psychologist.

3 - We want to add in general things to try and help with concentration, attention and focus. I am not sure whether this means we try BrainBeat first (based on interactive metronome) or BrainBuilder (software supposed to help). We will do at least one, and maybe both of these. To come so far and not try to finish the job properly seems foolish.

What else?

We will continue to see his holistic/functional medicine doctor.
We can add in some fun sports or activities now that we aren't at therapy twice a week (such as swimming etc).
He could do an after school club such as Landsharks now that he doesn't have those after school appointments.
I want to travel more.

What about me?
Well, for the past 7 years, I've had to parent a very specific way, and I don't anticipate that changing too much, but, now the focus will move more actively towards encouraging him to spread his wings and be more responsible for himself. Which means that I need to be more hands off. This is a big change. For a parenting experience such as ours, I honestly feel like I have been on edge for the entire time. I feel like I have aged 20 years and it's time to claim some of that back. I need to take better care of myself, both physically and emotionally. But, that will take time.

The past 7 years has given me a very low tolerance for nonsense. I don't care if someone disapproves of my parenting or lifestyle - my son's diet, my discontinuation of regular pediatrics in favour of functional medicine, my methods for discipline, my utter lack of any belief in any religion. I feel that the results speak for themselves. I just feel like I've been through enough to even care what someone thinks of my choices, and am happy to cut off unhealthy relationships that cause more stress than bring joy. I answer to myself and my family - not to outside influences that really haven't been a part of our struggles or journey.

We're free. The world is our oyster!

It's Official. We Have Recovery.

I'm still processing the information as of right now, and when I have fully formulated everything in my head I will write a longer post.

But - here's the quick version.

Our son does not meet criteria for an autism diagnosis under DSM 5. In fact, he met NO criteria.

I'm in shock. In the best way possible.

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.