So we did the EEG yesterday. It was hard for Oldest Son to sit still, as expected. The technician told me we would not be back, this test would be a one shot deal, and I assumed (don´t we all assume techs know the results of the tests as they observe them?) that the tech was saying she had observed nothing alarming.
So today I get a call saying that the doctor does not think my son´s neurology is responsible for his regressions but his EEG showed abnormal activity and we did not capture any seizure, so they want a 24 hour test and also an MRI with sedation.
I have never been away from my children for a night. I am going to have to be.
I arranged the sitter (eternal thanks to him) and I informed my boss and now I just have to coordinate another physical before the sedation.
The 24 hour test will be three weeks from now, the MRI in two, and I will have the results literally minutes after the 24 hour test is complete, before I even leave the site. I have never been so grateful to be out of California. I would never get appointments so readily there.
The regression in my Oldest Son is just about resolved. He is again able to take a bath mostly reliably and now he does remember to shut doors, even if a beat later. He still does not tie his shoes, but he was not doing that daily before. I have used a thin sewing elastic to permanently tie his shoes so that he can participate in gym with less chance of injury. Summer has again had a good effect on him, healing most of the damage.
Since the neurologist thinks his EEG this week will come out fine, then this has to be a psychological issue. Probably the stress of being neurodivergent in a neurotypical world (school).
I don´t know how to lessen his stress without lessening his chances of a more independent life. I can´t expect less of him, he needs to learn how to care for himself, so his home life cannot be the relaxing worry-free time I would want it to be. This morning I had to teach him how to take care of his armpits and so I taught him how to wash his own face for good measure, because if his chemistry is changing enough to give him body odor then he has to start taking conscious care of his skin. He is eight. I was hoping this would come two years from now- but when his upper lip got fuzzy a few months ago I knew it was going to be earlier than I wanted.
Luckily there are a few very big early puberty boys in his social group run by the psychologist, so I will be able to get advice from their parents when we attend.
Maybe when the service dog comes it will get easier. For him, if not for me. Please, for him.
He is no longer going to be viewed as a cute harmless little autistic boy in a few years. People are going to look at him with fear or unrealistic expectations due to his size and behaviours and I wish I could just make it all better. But you cannot hang a sign on your child and you cannot change the attitude of the general public. You have to just cling to hope that his immediate circle of acquaintances will yield some kind souls and a friend or two and pray he never has any trouble.
We have an appointment for an EEG in a few weeks- just to rule it out. The preliminary exam was aced by Oldest Son. Most likely his yearly regressions are not neurological.
That means they could be psychological. I have to be patient and wait for the test, for the results, for the conversation with the psychologist. I am jumping the gun, in my head.
Already I am sorry for him. Infinitely sorry. If this is psychological, then my son is experiencing a breakdown on a yearly basis- probably from trying to maintain as an autistic child in a neurotypical world.
Children should not experience such stress. Leaving our past and forging our fun, safe, and healthy future was supposed to heal him, ease his life to such a point that he could enjoy it.
How can you teach a child to cope with such difficulties? I have to teach him to be resilient and I don´t want to. I just want to make the way smooth for him. I have to demand he do this and do that when I know damn well his brain doesn´t remember the sequence, probably cannot remember the sequence. I have to push him and pull him and keep on him and I hate it. He wants to relax after school. He wants to relax all the time, really, just like any of us. He deserves a break and I can´t give it to him without feeling like I am hampering his progress.
His neurology is different-even without seizures. No one is going to accommodate him. Nothing I do can change those two facts.