FortForever
Disney since Day 1
- Joined
- Aug 16, 2011
I'm not even sure why I'm posting here since I have no interest in going to WDW, or doing anything really, ever again. I just know there are many parents here with kids on the spectrum.
I just want say what I wish I had done different. My son is 23. He has refused any medical treatment for years. He was completely non compliant with his medication even before he turned 18. Many times I have thought about trying to get some sort of legal control to force the issue. I didn't. I was afraid of putting a rift in our already tumultuous relationship. I was afraid of losing him forever. How ironic.
My son was a careful driver. He was a rule follower on the roads. I trusted him to drive because I knew he would never endanger another person regardless of mood.
What I didn't account for was him acting out aggressively behind the wheel on what he thought was a safe place to do it. Right around the corner from our home, on a long, straight, dirt farm road, he did just that. There are no homes on the road. No people. No traffic. You would see a car coming from a great distance. Not so with a deer that jumped from the wooded side.
Eight days ago I got the call that is every parents' worst nightmare. My son had been in an accident was not expected to live long enough for me to get to Gainesville, where Trauma 1 had flown him to.
My son had been wearing a seatbelt and the air bag deployed. Still yet, he has a worst case scenario traumatic brain injury. Or, should I say, series of brain injuries. Half his skull was cut away to remove the blood and clot from the initial impact injury. There is damage on the opposite side where his brain hit that side of his skull. And there is shearing of brain tissue from where the brain was thrown around inside his skull.
In addition, he had broken ribs, a punctured lung, damage to his liver, spleen, and a kidney. Right ankle broken in several places. Left leg shattered. Facial fractures and all the muscles in his chest torn from chest wall.
I'm not even sure how many surgeries my son has had in the past eight days. Everything is blurred together like a bad nightmare. After the initial surgery, we were told that he was one of the most critically injured patients they had ever had there that is still alive.
Our beautiful son is on life support. He can open his eyes now. All day and all night he spends staring into space and trying to get his broken body up out of the bed. He is restrained around his chest and by the wrists to keep from hurting himself further. Every four or five minutes, he tries to get up. They can't sedate him. Sometimes he will do it every 20 seconds or so for hours on end.
Only God knows what tomorrow will bring. I am profoundly sad and every bit as broken as my son. All of our lives changed in that moment. There will never again be happiness or joy in my heart.
The moral of this story. Do whatever you have to do to make your spectrum kids get, and comply with, treatment. If they are of age and refuse, involve the legal system. Let them hate you, at least they will be safe from themselves.
I just want say what I wish I had done different. My son is 23. He has refused any medical treatment for years. He was completely non compliant with his medication even before he turned 18. Many times I have thought about trying to get some sort of legal control to force the issue. I didn't. I was afraid of putting a rift in our already tumultuous relationship. I was afraid of losing him forever. How ironic.
My son was a careful driver. He was a rule follower on the roads. I trusted him to drive because I knew he would never endanger another person regardless of mood.
What I didn't account for was him acting out aggressively behind the wheel on what he thought was a safe place to do it. Right around the corner from our home, on a long, straight, dirt farm road, he did just that. There are no homes on the road. No people. No traffic. You would see a car coming from a great distance. Not so with a deer that jumped from the wooded side.
Eight days ago I got the call that is every parents' worst nightmare. My son had been in an accident was not expected to live long enough for me to get to Gainesville, where Trauma 1 had flown him to.
My son had been wearing a seatbelt and the air bag deployed. Still yet, he has a worst case scenario traumatic brain injury. Or, should I say, series of brain injuries. Half his skull was cut away to remove the blood and clot from the initial impact injury. There is damage on the opposite side where his brain hit that side of his skull. And there is shearing of brain tissue from where the brain was thrown around inside his skull.
In addition, he had broken ribs, a punctured lung, damage to his liver, spleen, and a kidney. Right ankle broken in several places. Left leg shattered. Facial fractures and all the muscles in his chest torn from chest wall.
I'm not even sure how many surgeries my son has had in the past eight days. Everything is blurred together like a bad nightmare. After the initial surgery, we were told that he was one of the most critically injured patients they had ever had there that is still alive.
Our beautiful son is on life support. He can open his eyes now. All day and all night he spends staring into space and trying to get his broken body up out of the bed. He is restrained around his chest and by the wrists to keep from hurting himself further. Every four or five minutes, he tries to get up. They can't sedate him. Sometimes he will do it every 20 seconds or so for hours on end.
Only God knows what tomorrow will bring. I am profoundly sad and every bit as broken as my son. All of our lives changed in that moment. There will never again be happiness or joy in my heart.
The moral of this story. Do whatever you have to do to make your spectrum kids get, and comply with, treatment. If they are of age and refuse, involve the legal system. Let them hate you, at least they will be safe from themselves.
Those of us with adult children with any type of disability have such a tough road. I am so sorry that this happened to your son. Thank you for sharing your story in the hopes of impressing upon other parents to do whatever it takes to keep our young adults safe. 
But I've been seeing a psychologist for years now who has been trying to convince me to not blame myself for certain things that have happened in my older DS's life. I just hope that a miracle occurs and that your son is able to heal. Please forgive me if anything I'm saying is offensive to you; I really feel so bad and wish I could make all of the hurt and pain go away for all of our kids, and ourselves. 
I know that is not possible for most families and I am so thankful that I am able to do it. I tend to all my son's personal care and non-drug related nursing care around the clock. As soon as it was clear that my son would survive, I wanted to learn to care for him as much as possible. The doctors gave their blessing and the nurses and therapists were more than willing to train me. 
