Working with kids with special needs

In the past I have talked about working with kids at Space Camp in Huntsville AL with kids that were deaf and or blind. Out of all the groups and kids that came through in a year both W and I fell in love with these kids more than most. Sure they had challenges, but many of them had developed a sense of humor and wit about them that knew no bounds. As a counselor leading these kids through activities things were more hectic than normal and quite challenging at times.

Then there were the moments that made it all worth it. W has many stories of taking kids down in the Underwater Astronaut Trainer (UAT) in full scuba gear and watching them just light up. I personally saw kids that were deaf and or blind conquer simulators that made most kids apprehensive a the thought or site of them.

So how does any of this relate to having a son with autism and hydrocephalus? These kids were fighters and their ambition knew no bounds. These kids faced challenges early on like Alvin has. These kids all grew up knowing they were different to a degree and let nothing stop them.

In a way I feel like our interaction prepared us in a very small way for what was to come. Both W and I have had many a sobering moment over the past few months. After saying the words “incurable neurologic condition” so many times to different people and explaining that the future is anything but certain for him the weight of the situation just hits. The stares that we continue to get and his gradual realization of what is going on can be a lot to take. Some days with all of this going on the only thing we can do is remember how far he has come.

A couple of weeks ago Alvin started back in gymnastics. I had no clue what was going to happen but after seeing his favorite teacher and getting to fully participate in a class he was beaming from ear to ear. That night he had accurately and appropriately answered questions in class. At the beginning he was asked if he could have one super power what would it be and he said “flying really fast”.  During stations he scared us all when he ran up to the bar and threw himself up and stayed there locking his arms out and just grinning. We were all in shock when it happened because no one really knew what to expect. Since then he has even begun to give verbal acknowledgement to the teachers when he finishes a skill by giving a high 5 and saying “yes! I did it!”

I apologize in advance for the video quality. I was taking this outside the glass with a glare from the sun coming in.

I guess what I am getting at here is to remind not only myself, but also any others that may work with kids with any kind of special needs not to focus so much on what they can’t do but remember what they can do. If Alvin and the kids I worked with at Space Camp taught me one thing is that they do anything if given a shot. The medical professionals we work with are trained to give us the cautiously optimistic answer to everything. Its up to us to help these kids defy what they tell us in anyway possible.

Is it tough, in a word YES. Its very hard to work to find programs where the child might fit and work with staff enough to help them understand what is going on. I can’t even tell you how mnay times its just killed me seeing Alvin try and talk or play with another kid just to get rejected due to his lack of communication and social skills. The thing we have to remember though is all the stuff that we fight for now will benefit them in the end. The more we fight for acceptance and fight for them to have “normal” lives the better chance that they will grow up confident in what they can do instead of focusing on what they can't do.

What does hydrocephalus really look like?

Being an engineer I am fascinated by working through problems and finding out what is really causing them. After Alvin’s second set of MRI’s I requested a copy for personal use and was pleased that the hospital sent them to us pretty quickly and I immediately started looking at his head and putting the pictures together with everything that we had been told.

Alvin has obstructive hydrocephalus which is just what it sounds like. There is an obstruction (in his case a cyst) that is blocking the flow of spinal fluid. In his case the cyst is blocking about 80% of the space between his 3^rd and 4^th ventricle.

Arrow pointing to the cyst in question

Close up view of the cyst

Cyst sitting in the middle

This cyst from what we are told could have been there since birth but no one really knows for sure. His head circumference was always on the high side but nothing that was out of the ordinary so his pediatrician never even questioned it. He was a little late walking and crawling but nothing that raised any red flags to anyone.

So after 5 years (or so) of the cyst growing this was one of the first images that the surgeon saw of his left and right ventricles.

Initial MRI scan of his head showing the enlarged ventricles

Those large V shaped areas, yeah they shouldn’t be there. His ventricles were quite enlarged and this was why the neurosurgeon’s office got us in quickly. Looking at this picture we know 2 things, he definitely has hydrocephalus and the pressure in his brain is probably elevated. To what extent we didn’t know at the time.

As I have talked about in the past the solution we went with was an endoscopic third ventriculostomy or ETV procedure. This is a surgical option that unfortunately isn’t an option for all kids/adults with hydrocephalus. The surgeon not only has to be skilled in the procedure, but also the patient has to have the right anatomy. Also this procedure is typically the most successful in patients with obstructive hydrocephalus like him.

So after 3 months and a revision to his head due to the infection these are the results.

See he has a hole in his head now

The arrow is pointing to a tiny hole that was made during the procedure to allow for spinal fluid to drain and relieving some of the pressure in his brain. The white line that trails down from it is proof that his spinal fluid is draining like the surgeon had planned.

3 months post op and the new ventricle size.

The last thing we looked at was his overall change in ventricle size. 3 months after the initial operation the ventricles in his brain are starting to shrink. There is no guarantee that they will ever go back to a normal size, but the hope is over the next year they will continue to shrink little by little. We also know that what will be considered full recovery will take a year.

Another thing to note is due to the placement of the cyst our surgeon told us again that it is not in the plans at this point to remove it. The cyst is in a place very hard to get to and as long as it doesn’t get any bigger or change it will not be touched. The ETV allows for it to stay there while still allowing spinal fluid to drain back into his circulatory system.

So now in the mean time we go back to being as normal as possible. Granted some days that’s harder than others. I am beyond paranoid with him. Every time he acts sleepy at a time he normally isn’t, every time it looks like he is getting a headache my mind starts racing.  He always seems to come out of these and my worrying is for nothing. Until he completely learns to tell us when something is off or hurting then both W and I will continue to be paranoid.

He is at least back in gymnastics and will be starting a full day kindergarten program in the fall. Going back to the gym is a big deal for him and he is starting to pick up right where he left off. He is still the same goofy kid that speaks in lines from his favorite shows and is socially awkward, but its getting there. He is answering questions appropriately in class though which is a step forward.

At home he’s starting to engage in more imaginary play by building what he calls “American Ninja Warrior” courses out of Lego duplo blocks. He is even starting to get better fine motor skills with writing practice. This past week when we were going to practice he sat down and wrote his name with no help. Its still really rough, but at least he did it and I could tell what he was writing.

So that’s about all. I hope this post sheds some light on exactly what his condition looks like via MRI. To me its pretty interesting and while its been a scary and trying time over the last few months we are now in the management and recovery phase which we are very happy about. If anyone has questions please let me know and I will do my best to answer them.