This post is a draft I started a few years ago and never finished, but since the content is still relevant I thought that I should just finish and post it. We are still currently working through this particular issue two years later so this is a condition that my son currently has and is dealing with. Technically my wife and I are still dealing with it as well but that is how it always is.
I know many of you have been where I am right now, and I also know that I will eventually get through where I am, but it is sure tough to be here. Both of my children have issues time to time but there are times when life reminds me that my children are in fact different than NT children, and no matter how hard I try, or no matter what I do, it will always be that way. Because my son is on the high side of the spectrum I sometimes think he isn’t as affected by autism as I know in my heart he actually is. I know I should have certain expectations and I know I should always strive for him to be the best he can, but there are times like this past weekend where reality slaps me in the face.
this story actually starts when I took the day off of work to go to a relatives house with my wife and the children. I did this because it is tough for my wife to handle both of them alone. This is mostly because of our daughter and the fact that she is almost my wife’s size now, but much stronger. Even though she is nonverbal and on the more severe side of the spectrum, she is very athletic. She routinely competes in Special Olympics and Spartan Race. Now this story is more about my son, but I thought it best to explain why I had to take the day off.
To set this up, my son has gained almost 60lbs in a year, and this is Med related. We wanted to get a handle on things because he is going into high school a year early. The early entry in HS is because we are closing the middle school in our town because it is old and not in suitable condition to have children there full time. The other 3 schools changed the grade arrangement per school, so since the 8th grad is the oldest grade it the middle school it was decided that this class would go to the HS. Knowing this, the fact that Z has gained weight and he is autistic, we thought he would be fair gain for extra unwanted attention.
At this point the decision is do we take him off of the Med making him gain the weight and switch it to another, or keep him on it. This is always tough as you know so we were weighing pros and cons. The truth is that he still had anxiety with his current meds so we thought a change might be good. We consulted all of the doctors and therapists and made the decision to make the switch. The plan was to step down the main Med and then once he was off of it then a new one would be introduced. The first week was ok but in the second week we noticed some motor ticks and they started getting worse as the time went on.
Now we are at our little vacation day with the children and with our main attention was on Chickie, we didn’t notice Z was having issues. Once it was brought to our attention that Z seemed to be struggling we saw what was really going on. Not only were there facial ticks but he was literally grunting and could not control his arms to keep them still. He complained he couldn’t control himself and his anxiety started to kick in. Well at this point we are now making our exit, but the problem was that we were an hour and a half away from home. Chickie was now at her end of being fully tolerant so the ride home was not pleasant. As the ticks and grunts got worse my wife made the decision to call the psychologists office for help.
Now I just want to make note here this is where the updated content starts to add a little to this story, as I said at the beginning it is still going on. So this psychologist office was of no help, the therapist was on vacation and no one filling in do no one else would help. Now just to describe what is going on here, my sone started with facial ticks but it progressed to involuntary movements of his toes and hands. What I mean by that is his ties curl in and his arms and hands kind oh jump around and flex. We ended up calling Children’s and set him up with the psych department which also included about a ten day stay at the hospital. He has had to do this about four times in the last two years. Thankfully we have Boston Children’s because they are fantastic. Anyway to also describe how bad this is when it happens, my son has to use a shower bench in the shower because his toe flexing makes it unsafe to stand in the shower.
Ok so after working with Children’s my son ended up being diagnosed with Tourette’s which was the cause of the involuntary movements. He was also diagnosed with a movement disorder. I know isn’t it great that you get all of these secondary disorders to autism, they just make things much easier, I mean hell. On a good not he did get set up with a movement specialist and he is outstanding. You can literally text him all hours of the day and he will respond to you. He has also worked with us on multiple med changes so he is a great help and resource for us.
Now to this day two years later my son is still having this issues that we have to work through time to time. He does struggle but we generally work through it. We are in the middle of some med changes and he is just about a month past another hospital stay, again at children’s. The good part of any is that all of his doctors and teams are all from there now so they all collaborate on his care. Yes you have to go into Boston, but they are really the best at what they do. My advice to anyone is if your child has complicated issues you should consider a pediatric hospital and working with all of their staff and departments. Everything just goes much smoother this way. You don’t have to make multiple appointments at different places and they can all easily communicate together. Having a dr on standby doesn’t hurt either.
dualspectrumdad 