All About Jax

I've had a few people asking me about Jax lately, and I am struggling giving the update over and over so I just decided to post an update here.  We seem to have the seizures under control with medication for now. Unfortunately, seizure medication is known for eroding teeth so he has to go to the dentist every couple months for a cleaning, but that is the only side affect for him so far, so we are very grateful for that.

Jax has multiple therapies a week (phyiscal, occupational, speech and feeding all with multiple sessions per week) which keeps me pretty busy. Last week he had check ups with all his doctors also, and will be receiving another EEG soon along with an MRI because the last one didn't show enough. He has to be fully sedated for these scans so that is stressful. His developmental pediatrician completed his usual assessment and updated his diagnosis from Global Developmental Delay due to epilepsy to a Communication Disorder due to epilepsy. We kind of figured this was coming because his Occupational Therapist as well as his Physical Therapist have been telling us that he will probably be able to drop those therapies by the time we move (in 2 months) because he is very close to catching up in those areas. When I inquired further about what exactly a communication disorder means and what Jax's future might look like, I was basically told that he will always have trouble with speech, reading and writing (common among children who have epilepsy) and unless a miracle occurs he will probably not be going to college. He then tried to smooth it over and say sometimes for no reason (aka a miracle) kids catch up and do perfectly fine the rest of their lives, but its not very likely especially since his speech score actually went down from the last time we saw his developmental pediatrician 3 months ago.  I asked if we were really diligent about getting really good therapy for him if that will help him be able to be in regular classes in school and he said "well we never really know if therapy actually helps kids or not". I kind of wondered what would happen if he said that in a room full of therapists.

I don't know if its that we have the seizures under control, or if it is the therapy, but these last 7-8 months Jax has really come out of his shell. What is most frustrating is that he scores really high on problem solving skills, so he is very smart, he just can't communicate that. Sometimes we have tantrum moments where he knows what he wants but he can't tell us and we don't understand him. That is hard for me. I want so badly to just be able to talk with my little boy. We have taught him several signs (American Sign Language) and that has helped some, but he has very few words. He still has not said mama or mom with any sort of meaning behind it, though he can point to me when asked "where is mama?", or "who is mom?". While he does not have autism, I now understand what those moms mean when they say their little one is trapped inside. Sometimes I feel like Jax is trapped inside himself. He wants so bad to tell us what he wants and needs, but he just cant.  We will be continuing with speech therapy for the foreseeable future (even though the doctor claims it doesn't help anything), even if that means we eventually give up on words and go strictly to ASL for him.

The night after the doctor visit I didn't sleep very well. It finally hit me really late at night that Jax probably won't have the kind of future I imagined for him. I am not sure right now if this means he will live with us his whole life, or if he will be able to live on his own maybe with some assistance. Or maybe he will just have a life in a job where he works with his hands and doesn't need to do a lot of communicating. Of course I believe in miracles, but I also know that miracles aren't always as they seem. I prayed for my first baby to miraculously live, and I never saw that miracle. But even though that particular miracle didn't happen, I can see that so many other miracles happened, even if it wasn't exactly the one I was praying for. I also know now to pray for the miracles we need, not the ones we want. I know Jax was sent to us to show us miracles. And it might not ever be that he miraculously is able to communicate with no problems, but there will be others, of this I am sure.  He has already brought so much light and love into our lives, and we are so thankful he is part of our family.

**Update** even though the doctor does not think therapy is very helpful, we have started looking into specialized elementary schools for Jax that deal specifically with children that have the same type of communication disorder that Jax does. These schools have amazing success rates of children that are able to transition to regular school by high school and almost all of them end up attending college. Tuition for these is about $20,000 per year (side note-that is more than all 4 years of my college education, ouch!). We have pretty much been agreement that doing the full 20 years and retiring from the military was in the cards for us, but with this type of cost for schooling we aren't sure if that will be possible since military pay is definitely not that grand. We have started to consider other job options etc because we want to give Jax every chance possible to have success in life.