A Louisiana autism family faces ever-escalating trauma, but finds no relief.
“As his mental state, mood and anger got worse we found ourselves having to strong-arm our son down to the mat three times a day so that he wouldn’t mortally wound himself with his own fists.”
By Robyn Smith Tweedy
If I had to pick the hardest year of my life I’d have to say that it was definitely 2019, and believe me when I say that that is saying a lot.
I have never written publicly about our 17 year-old autistic son’s struggles but since it’s a new year and a new start I thought I would tell a little about the past year (although kinda cryptically here because no one should hear every gory detail) and also in this post I want to pray and look for hope in the new year.
My husband and I have been very alone and isolated from the world but very grateful that we have each other (as well as my mom and our incredible three older kids who are amazing with him as well). Together, alone, we have dealt with not only nonverbal self-injurious autism in our precious son (as if that wasn’t difficult enough for him) BUT just when we thought it couldn’t get any worse for him or for us it did.
Our Shannon, when he went into puberty (late 2017 at 15), began to spiral into multiple severe mental illnesses the combination of which we have learned in a year of trying 20 different powerful meds that there really is no easy fix for what he presents with.
We have zero help and had zero help when the worst of these mental illnesses all came on at the same time with a vengeance. (We’ve tried PCA companies but all send only untrained low-paid workers that had no training in “Shannon syndrome” and were often too small and shouldn’t work with him anyway.)
All three of our big kids were away at college or living elsewhere. We thought it was just teen stuff, autism style. We thought, we’ve handled the last 15 years, we can certainly handle this. Well nope. Not even close.
The other realization we came to early 2019 is that NO ONE (strike that, no two) should EVER have to handle this alone especially with no big dudes on hand and no professional support to help us understand what is happening in this insane world of puberty, mental illness and nonverbal autism.
So into 2019 things got absolutely horrific. He was getting bigger and stronger every day. And sadly he was also becoming more mentally ill every day as well.
Not that autism was a cakewalk before that, because it wasn’t, but things started to get much more serious. As his mental state, mood and anger got worse we found ourselves having to strong-arm our son down to the mat three times a day so that he wouldn’t mortally wound himself with his own fists. We were, every waking moment, desperately trying to help him in any way we could fight his way out of the serious mental illnesses and disorders that were coming on like the green hulk in our sweet little boy.
What he began to have was a complex mess of disorders and mental illnesses all at the same time. This includes a panic disorder, severe OCD with obsessions, compulsions, irrational fears, assurance seeking, an awful awful mood disorder, and mind blowingly loud AND incessant Tourrettes and tics (we now have PTSD and tinnitus, both of us and my mom) also he has schizoaffective disorder (a mix of bipolar and schizophrenia) and all of this is in one young person who is still under 18 years old and has the mind of a toddler.
What we found early on in this insanity is that there is no defined road map that society has mapped out for kids with our son’s particular issues. There is no help for us because he has AUTISM with all of these mental illnesses and disorders.
In our state there are no resources or societal solutions. Everyone we have gone to for help basically gives us a blank stare. When they see Shannon in action and when we describe what is going on they look scared and helpless.
So the no-help and the no-solutions leaves you just to retreat back into your home, trying not to let any neighbors hear the insanity going on in your house and just pray that it gets better. The problem is that it doesn’t get better.
Dealing with it physically not only takes its toll on both parents, but we have no trained workers to relieve us. Ever. Jim often will have to fight Shannon to keep him from seriously hurting himself, stand up from the mayhem, and go back to work. Jim works from home but it’s miraculous that he ever even gets work done. When neither of you are allowed to work it’s fatal financially. This child requires undivided attention every waking moment. Every family with a child like Shannon is forced into certain poverty.
We all love this young man and we will do everything and will never ever give up trying to get him the help he needs. We will continue to work on meds but some even caused him to have MUCH worse problems. But we continue to try, hoping we will find the magic combo. Aside from medications, if we can’t find what will calm his mind and help him grow and be happier, then God willing we will try to create help for our son and for us. Our only goal is that Shannon can have peace in his mind so that we too can have peace of mind in our life.
I believe that severe autism like Shannon’s should have its own separate diagnosis and definitely its own focus from our governments at all levels. There needs to be a new movement to bring awareness and help to this specific subpopulation. There needs to be specific research, help and resources for this dual diagnosis population AND for their families.
So since 2019 was my worst year ever, I am praying that my 2020 and YOUR 2020 are vastly different and much better for you and of course for your precious special kiddos. I’m praying for all of you out there, my kindred spirit parents and sole carers who understand exactly what this post is all about. I am also praying for the nuclear as well as the extended families who love us who are dealing with this but who are powerless to help in any way.
Robyn Smith Tweedy is the mother of four, including a son with a severe form of autism, who lives in Louisiana.