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.

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!