Deep in his eyes, I can see the rumbling of demonic rage brewing. He is once again lost to the effects of medication. Anti-epileptic medication. He is drug-resistant, but these drugs are all we have. His health deterioration has been speedy compared to the previous years. “We need to try something,” his consultants say. And so, we do.
A new medication that serves to sedate him in the hope that being more vegetative, he will not have quite so many or severe seizures. The impact is more immediate on his neurodivergent mind as he tries to deal with that sedated feeling. He is confused, anxious and ultimately frightened by not feeling the way he would normally. He tries to fight it. He tries to understand what we are explaining to him. He fails. Basic instinct kicks in and the once-managed rage resurfaces with such ferocity I struggle to contain it.
Such violent verbal attacks, confused feelings, and his mind in turmoil. Treatments for epilepsy can impact so negatively on the characteristics of autism. His consultant urges us to persevere for a while longer, we need to understand if this additional medication eases his uncontrolled seizures. I pray that I have the strength and resilience to continue and support him. His anger is not his fault. His condition is not his fault. It is hard for him. Every day it is hard for him just to get through it. I once again need to learn how to walk on eggshells and not to take personally the attacks I receive.
We will come through this, I know we will, but supporting a person with such additional needs is hard …
