Taking a toll
My last post may have been written too soon. Please read on and I believe you will understand why I say this.
Where has my son, Brandon, gone? I know in time he will return, but I also know that we have to find a way to stop these seizures, because I don’t believe his body can take much more of being slammed to the ground.
I often talk about how great my son is doing despite all his limitations, but this past week, Brandon had three grand mal seizures so close together and it has taken a toll on him.
After these seizures, he has become even more rigid. He has to stick to his routine and it cannot change at all. He has an extremely low tolerance for stress or maybe it would be more accurate to say he can’t take any stress at all. The weather has always been a disturbance for him, but after these seizures, he can’t tolerate the drastic, unpredictable changes in the weather, from cold, to hot, from wind to rain. Our weather is very mild here in Los Angeles compared to the rest of the country, but it doesn’t matter how mild it is, it still feels like a drastic change to Brandon and disturbs him greatly. Money issues stress him out and his alternative treatments are extremely expensive and when he has seizures, he is less inclined to go for treatments that he feels are not working.
He is unable to shave properly. He has a mean look on his face, most of the time. He is stressed out and working hard to get his equilibrium back. These seizures are not only unpredictable, but they rip my son’s life apart. They are violent and play havoc with his world, a world that we have worked so hard to make work for him.
It takes so long to get our special needs children and adults to where they are, and so little to knock them down. Life is precious and can be ripped apart in a split second, but we cannot give up. I will watch my son closely and help to bring him back once again. I will let you know when Brandon returns, and I am hopeful it will be soon.
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The public needs to understand that this fragility not only applies to people who are coping with severe disabilities or learning challenges, but, for an autistic adult, such as myself, the trauma of bullying, discrimination or nonacceptance can cause a similar rigidity in routine and behaviors. We are more susceptible to become disenchanted with authority figures who prove themselves untrustworthy. This causes us to shut down further and further. I have to fight hard daily to focus on what I can do to improve my life and THEN extend that sentiment to others.
This wonderfully candid, unbiased observation of Brandon is refreshing. It has to be extremely difficult for any mother to give an account like this of their child. It does not assume that Brandon isn’t aware of how much of a toll this is on him. She is almost like an investigative reporter sharing, with us, Brandon’s journey. This endearing account remains in a reality that’s consistent with the average person’s life condition. There’s no wishing or condemnation.
I will say this as someone who has had many moments of “shutdown” due to some of the same issues facing Braxton, minus the seizures: We haven’t gone anywhere, figuratively or otherwise. We are right in front of you. When these things take a toll on us, it’s, for example, like a soldier, who’s experienced battle in a long war, having Post Traumatic Stress Disorder. When he hears a car backfire, the soldier’s been conditioned to think it’s gunfire and reacts accordingly. In a similar way, we only know what’s happening in our brain that causes us to consider ridged routines every time we experience a set back. For me, it’s comforting and decreases my frustration. It may not look “normal” to the outside world, but, it’s my own way of making a ‘comeback’.
Brandon’s traumas are real to him and Amalia, you have brilliantly made them real to me. You’ve also may have unintentionally uncovered the essence of what many of us on the autism spectrum experience mentally and emotionally after such setbacks. You are my hero for simply wanting to ‘not give up’, but, do all that’s within your power to help Brandon. One day soon, I hope to share my own journey in this way, as a person living and coping with my autistic brain. For now, I’ve got a great deal of work to do. Thank you, Amalia, thank you.
Michael ☮
“It takes so long to get our special needs children and adults to where they are, and so little to knock them down.” No truer statement was ever written. Parents of a SN child will be “just that” for the rest of their lives…and most hope and pray that they will be around for all their SN child’s life! I applaud your tenacity and wish you all the best in: ” I will watch my son closely and help to bring him back once again.”