It felt kind of surreal, a tour of the same remote island we visited 5 years ago.
From one deserted autism beach to the next. One explanation of how and why, after another.
A Three Hour Tour
If I have to be honest, I did not hear a lot of what the tour guide had to say.
I heard her talking. I even saw her long blonde hair and her perfect make-up. I loved the cut-out pattern in the back of her shirt….That’s about where my thoughts began to swirl …
Is her skin showing? I’ll have to look again…No, she has a skin toned cami underneath. Good, I wouldn’t call it appropriate, but it is cute.
There are three different levels, your son would most likely be in …. What did she say about levels? Oh, right … I remember one, the one she said would probably be the best fit.
This is our sensory room, there can only be one student in here at a time, we have these … There is a shoe in here…I wonder if the kid threw it at the staff member…..
This is another classroom, I am showing you this room because … This room smells like their lunch. Oh, that’s right, she said the kids eat in their classroom because the acoustics in the cafeteria are so bad. As you can see, the furniture in each room is made so that the kids cannot … My gum has lost its flavor <interrupts tour guide – May I spit my gum in that trash?> That was probably rude, I just couldn’t handle that gum another second.
Let’s go back up front, I think I will throw up if I take one more step down these halls.
Oh hey! Here’s our CEO! What? Their CEO is standing in the hallway? Wow, that sure never happened last time we visited. Fred, meet this family. They are touring our facility for the first time in five years. They are considering… No really, I think it is a good thing I didn’t eat before I came… deep breaths, Lena … deep breaths.
Now, let’s go in here, we can sit down and talk. I’ll answer any questions you have, we’ll call the admissions director in to answer any questions you may have for her. Wow, did you know those are ugly curtains and how old are they? Oh, sorry, probably not the questions you had in mind, huh?
Well, if you’d like, we can walk down and see what the bedrooms are like, and see the outdoor areas. DUH! Yes, I’d like to see those, last time the toilets were taped together and the furniture was falling off of the walls!! That, and the fact there was no teaching happening, and there were curse words all over the walls, and … and …
WHOA?! The furniture is all clean and well intact. That surely wasn’t the case last time. Impressive.
Five years ago this place was a dungeon… Today it is better, but I remember what it was like …
Is it really better
When we visited 5 years ago, the facility was under different management. We visited before David’s doctor became the medical director, before the new CEO and other directors came on board, and before they had a complete staff turn over.
In addition to new people, they have also moved from what was predominantly a psychiatric residential treatment facility to a facility focusing on Autism.
Each month over the last 5 years, we have watched this program develop. We have seen it grow from just the psychiatrist’s dream into something remarkable, something that has become successful in helping adolescents with autism learn to function more appropriately in the world around them. It has a good success rate, and is one of a kind in the state, and one of a few in our country.
The facility went from a black and white, bleak place to be to a more colorful, less bleak place. (Let’s be real, no place of that sort is going to be happy and welcoming…That’s just not the way it works…Gosh this sucks…Why can’t this place be like Disney?)
Everything, on an intellectual level, says I should be counting my blessings that we live close by and that it is available for us when we need it. I should be glad that David’s doctor is there and that we are the only family who has ever been able to get our local school system to pay for a program of this kind – and we didn’t even have to fight for it! I can see all of the good things. Really, I can.
The raw truth
Intellectually, I see the good that is there, but emotionally is a different story! I have training and education that should be enough to help my son. I should be able to help him, I should be able to teach him what he needs to know so that he can be a productive citizen.
I know all about that whole nature vs nurture thing. I know about prenatal care, I know this and that. I don’t need to hear any of your miracle cure, special diet, or supplement bologna … I assure you, you haven’t thought of anything that I haven’t thought of. I promise you.
I wish my love could be enough, I wish I could love him so much that all of the torment in his poor brain could be squeezed out by the love. Don’t yell at me for calling it torment. Please, you don’t know …. I swear, you don’t …. my baby’s brain torments him, and I would give my life to take that torment away from him.
My heart aches, I can’t breathe, I just remind myself …. breathe in, breathe out … Gosh this hurts …