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.