2020 has been off to an interesting start. Interesting is the best word possible to describe the mixed emotions we have had since entering the new year.
Whenever I see people I know out in public (work, stores, church and other places I actually go), everyone always asks how Greyson is doing. I almost always respond “we are hanging in” or “he’s an interesting kiddo”. The truth resonating in my mind is always, “why do I try to play this off like it’s no big deal and that I am managing this fine”, when deep down it physically breaks my heart if I put too much thought into our situation. I thought that as G got older and we learned his routine, tics, compulsions and behaviors, things would get easier. Truth is, as we learn more about him and his condition and the bigger/stronger he gets, the worse things seem to be evolving.
I have found myself telling parents recently that “the world of Autism is an entirely different world. No books, research or degree is going to prepare you for it.” And it’s so true. The world of raising a child with ASD is an entirely different ball game. Even working as a TSS in the past with kiddos with similar disabilities as G, I never would have imagined that raising him would be the hardest job of my life. Working full-time and being a full-time mother of a child with special needs and a very busy sibling, is becoming quite the challenge.
I must say that my work has been keeping me grounded in actual reality. Talking to other parents, listening to their stories and putting their child’s faces with their name, has really given me solace that I am not alone in the world of Autism. WE are not alone in this world. We, as many other families, take our world day by day. Never assuming that one day will be the same as the next, because it never will be.
Medically, G has been grand-mal seizure free for a several weeks now, adjusting well to Onfi, which is is most recent anti-convulsant prescription. Things were going fairly well until January. Not sure what (if anything) had changed, but his impulsiveness became unmanageable. Everywhere we went, everything we did, always ended up in something broken, destroyed or someone injured. We were fed up. We met up with his child psychiatrist and started a dose of clonidine. Immediately we saw a difference in Greyson. We traded impulsiveness and hyperactivity for extremely fatigued and aggressive Greyson. On a positive note, despite the tiredness and negative behaviors, G has been doing extremely well on the clonidine. He is happy again, sweet and loving. He does not get really aggressive unless we deny him access to an item he wants, or if he is extremely tired.
Though there are many negative things that can be said about his destruction, aggression￼, lack of sleep and self-injury, he has been doing very well with school. He absolutely loves school and enjoys going to his class, even though they make him work. School has reported that he’s extremely fatigued and falls asleep during instructional time, most days. His ABA service comes out after lunch/naptime and he seems to be doing well with this as well, even enjoying his “roller coaster” toy for reinforcement.
Tomorrow, Greyson and Derek will be traveling to CHOP in a Philadelphia for another 24 hour EEG. This is overnight EEG #3 and his 5th EEG he’s had to date. We are hoping this new EEG will show if Greyson’s seizures are better managed during sleep, with the medication regiment he’s currently on. We are also hoping to see some more brain activity from the left side of his brain, which is his “lazy side”.
I used to have high hopes the night before a procedure, appointment or test, praying we would get answers or a cure. Now I have become so desensitized to how these appointments typically go, it just feels like another test and another appointment. If the Onfi is managing his seizures well, we could potentially discuss decreasing the medications all together, but depending on which neurologist you ask, we may or may not have much luck. Greyson’s specific type of focal epilepsy is very rare, specifically the seizures when he is asleep.
Electrical status epilepticus in slow wave sleep (ESES) is a rare, age-related, self-limited disorder characterized as epilepsy with different seizure types, neuropsychological impairment in the form of global or selective regression of cognitive functions, motor impairment, and typical electroencephalographic (EEG) findings of continuous epileptic activity occupying 85% of nonrapid eye movement sleep.
The neurologist and psychiatrist also have a theory that Greyson is so aggressive and injuring himself over the past couple weeks, because he’s tired and not sleeping well. He gets migraines when he’s extremely tired, so I can only imagine how he must be feeling. He obviously isn’t aware that this EEG is taking place tomorrow, but please keep fingers crossed that we will see some improvement in his night time seizures.