"You laugh because I'm different. I laugh because you're all the same."

Tuesday, January 19, 2016

17 months later...

It is 1:40am and I am unable to sleep. Not for any reason at all. And that's a good thing. I haven't written in almost 1.5 years. So much time has past. I read my last to posts and I am so very happy that this post brings a lot of positivity and good news.

I didn't stop fighting and as a result we finally have improvements for Tyler. Where do I start??  Tyler continued to struggle for over a year past my last post. It was such an incredibly hard year to watch my son deteriorate. He ended up regressing in almost all areas. In March 2015 I went to our special education director expressing concern over Tylers regression. She really did not want to deal with me and did not say anything helpful. My husband and I started thinking about a new school placement for him. The school he was in is great at what they do. But they don't do severe language learning disabilities. They were fantastic at rehabilitating him emotionally and teaching him a lot of life skills. But he still was not learning how to read and write.

His fatigue continued. He quit all activities outside of school. We added a second seizure medication that is also suppose to help with headaches. That helped the headaches tremendously. We saw a slight improvement in fatigue around Christmas time in 2014. Then Spring came and I thought I was seeing some seizures. They did an EEG. No seizures were captured but discharges were indicating seizures had occurred or has the potential to occur. As a result his dosage for his primary seizure medication was increased. He had another horrible summer.  At this point I felt it was time to try another medication to see if the problem was the drug. But his neurologist disagreed and would not switch him. Finally in the summer I asked that his blood be tested for medication levels. The results came back indicating his medication level was borderline toxic. His neurologist was away on vacation and the covering neurologist was hesitant to do anything. But she then said how about you go down to the lower dose until his neurologist gets back. So we did. And it helped but it didn't fix the problem.

During this time we are also battling the public school system. We made the decision to switch Tyler to a school primarily for language learning disabilities. The spec Ed director was not in favor of this but she did eventually agree to send out packets. I won't get into the mess of all that. It was a hard decision on our part because he was still dealing with fatigue and we were so worried about his emotional well being. But we had to look at it this way:  Tyler will likely be able to live independently as an adult with his level of autism. But. He will NOT be able to do so if he also can not read or write.

We met with the neurologist some time in August and we argued over trying another medication. He agreed to allow it. This began a several month wean off of one drug and titration onto another. The result has been nothing short of miraculous. My Tyler slowly but surely started coming back to us. By October he was 100% the silly, goofy, hyper, active child that he was before the seizures began. I can not even begin to express the change, the relief, the happiness.

Tyler started his new school in October 2015. I will not share the fight to get there because it is just to draining on me. But we did persevere and Tyler is now in a school that focuses on dyslexia based programs and they are provided throughout his entire day. They started completely over with teaching him how to read. Less focus has been on writing but that is something we will discuss in our annual meeting in June. So far they are doing the best they can to support the autism side of things. There is some struggles there but I can honestly say they are working together, and with me, to accommodate him in those ways as well.

Tyler is now on the YMCA swim team!!  This time last year he was on the pre-swim team. They met twice a week and he struggled to get through an entire practice, often having to leave early and skip many practices. We eventually pulled him out. Then in October when he was at the end of the medication transition I enrolled him again. He did so much better. He made it through all practices and attended almost all practices. So we decided to step it up. He was enrolled in swim team this current January 2016. He goes 3 times a week!  He will not be competing this time around. I enrolled him mid-season and it ends in March. I do not want to push to much at once so for now, no meets. Just practicing and learning and focusing on being there most of the time.

My own life has greatly improved. I have been on a major weightloss and fitness journey. So far I am down 100lbs. I have 50 more to go. I feel wonderful and healthy and so much happier. I just can't believe how much different life looks right now compared to 1.5 years ago. Tyler has also been doing great with illnesses. I wonder if part of that has to do with his newest school having absolutely no carpets. It is January and he hasn't needed steroids once yet this winter!  He's had a few colds and a few nasty viruses but he has recovered from them all on his own with no medical intervention. So even that had been wonderful for the 2015/2016 year. Knock on wood!!

Anyways. I should try to sleep now!  Can't be tired tomorrow. I have things to do!

-Tylers Mommy

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