350 DAYS until my boy can come back home. I’d be lying if I said I wasn’t nervous. I am.
The truth is that in the past we have failed him. Preston falls in with a group of kids his age that ABA was not prevalent in treatment when he was younger. If we had it, families paid out of pocket because insurance doesn’t cover it. We didn’t have ipads or the latest technology to help them. We paid out of pocket for EVERY therapy because there is no cure for autism. So I suppose in voters/legislators/ state/federal/insurance companies minds they decided, “why pay if there is no cure and it doesn’t help”?
Leap forward to 2017, we now know it DOES indeed help. A bit too late for some, but better late than never.
My son has been abused, traumatized, and emotionally detached and defeated. However, this time we are trying with more educated decisions. I applaud the above mentioned team members for trying again, with a better plan for him. Even if it took (more) blood, sweat, and tears (again).
Yesterday I recived the news that a contract is in place for P to go to the Great Lakes Center for Autism & Research (GLCAR) again in Portage Mi (near Kalamazoo). The plan is to have him there until behaviors decrease and he is stabilized. Then hopefully place him into a program (brand new) that helps with the transition from a restrictive environment ( meaning lock down facility, concrete walls, limited access to windows, 24/7 care, etc) to a Least restrictive environment (Meaning a group home with doors, windows, home like setting, more freedoms etc.) The goal is that he can come home to our county and live at PALS… the group home I am starting for him but will also benefit others with autism.
I’m scared shitless. I’ve never been in management, I’ve never owned a business, I’m afraid of failure, I’m afraid P and I will not succeed.
However, I have no other choice. I love him more than anything or anyone in this world. I have to try to find placement that meets his needs. I have been fortunate enough to get help from friends and family on this venture. We thank you.
So the clock is ticking and I am feeling the pressure. I am almost finished with my degree and after a year hiatus (due to stress and life and P) I am enrolled again and will start in a week. My plan is to knock the rest of the classes out and be done. Then I move forward one step in front of the other to make this happen for my boy.
Some days I am confident and other days I think I have lost my mind. I suppose either way, it doesn’t matter. I’m doing it.
I have so many friends that are heavy on my heart lately. Autism is not a gift. Not this kind of autism anyways. I don’t know one parent who thinks that self abusive behaviors are a gift. Seriously…… The autism nobody wants to hear about. Its not a gift. It’s a sad lonely, terrifying, isolated, hopeless, and unfair life. I wouldn’t wish it on my biggest enemy. Cliche, but true. So please pray for those who are struggling. It’s all we have.
The latest hospital stay for Preston has been tough. I did have feelings…….. (ugh) of not wanting to be here anymore. I had feelings of wanting to end his suffering. Then I think of my friend Kelly, and I think that her torment and guilt will never be less, but more acute. Of course her incident wasn’t completed. Believe me, I’m glad…. for the most part. However, I still struggle with the constant torment that is betrothed upon us, children and parents alike. It’s unsettling to know I still harbor these feelings deep inside, but I’d be lying if I said they didn’t. I’m not afraid to die, and to me that is really scary. I’m only afraid to die and leave P behind. I know I am not the only one. I subject myself to scrutiny writing this, but I do it because I need others to know that they aren’t alone. Cliche (again) but very true.
So we shall carry on as soldiers do. No worries, I’m not unstable or in a crisis (anymore). I am just a mom to a boy with severe autism who is doing her best to keep her shit together and do what is best for her son and others.
Please pray for safety as we transfer P 3 hours from one side of the state to the other. Mostly pray that his transition goes as smooth as possible.
Also TRY your best to understand instead of being all judgy and pointed fingery…. because mean people suck and uneducated people are dumb by choice. Those with autism don’t have a choice to be the way they are.
keep on keeping on … xoxo
InSain but Stable