Archive for March 12th, 2011

The night before Andy and I traveled to Oneonta to tour Springbrook,  I went with M to Proctor’s to see The Lion King; it was his Christmas present for me.   Oddly, at the last three concerts or shows I’ve gone to, I’ve sat very near or right next to disabled individuals.

At this show, I was seated next to a smiling lady and on her other side was a young man, maybe 20, who was rocking forward and backwards in his chair, obviously excited, obviously mentally disabled.  I said hello to her and asked if the young man had autism; I have a little boy with autism, I explained.  She said his name was Thai (not sure how to spell it – sounds like “tie”), she was his mother, and that no, he had (some other disability I don’t remember)– so we talked a little bit before the show started.

It was obvious that Thai was freaking out the lady sitting on his right – she was scrunched as far away from him as possible – so I suggested to his mom that she switch places with Thai; I told her his rocking and movements wouldn’t bother me.  Gratefully she agreed, and Thai amiably moved to sit next to me instead.

The musical began, the first song (The Circle of Life) building to its climax.  When Thai rocked toward me, I leaned against him; I could tell he liked the pressure because he stopped rocking and leaned right back into me.   I liked the contact, we two leaning into one another – it made me feel warm somehow, knowing this man could come to a musical and enjoy it – it gave me hope that my own boy might one day be able to sit through a show happily, hopefully next to someone who doesn’t mind his disability.  Sometimes during the show Thai would place his hand on my knee – and once I put my hand over his; we sat like that, watching the show, for a few minutes…a one-time connection of two strangers that made me feel more whole.

The show was fantastic…incredible how they did it all on Proctor’s little stage, transforming the place into a magical African jungle-world with innovative costumes, scenery, and fantastic actors and actresses performing in explosions of color and song.

It was a distractingly pleasant prelude for the next day.  Like the day we went to Tradewinds, Kathy (a social worker from Wildwood) picked Andy and me up as soon as we put Jonah on the bus and this time we headed to Oneonta, NY (where I went to college) to tour Springbrook.  Another specialist from Wildwood, Heather, met us there.  It is a pretty location for the school and resident homes, tucked in among the tree-lined hills of the area as if placed there gently by a giant.

I was glad to learn that construction was going on for a brand new gymnasium, cafeteria, and two new residences.  We were very happy to be able to look in at their shallow (2-4 foot, yet large) indoor pool and learn that some of the homes had bathtubs.  Funny what we cared about – of course other things are important too but we want our little water-boy to be able to do the things he most enjoys.  Plus they have equine therapy, yoga, and other activities, they take the kids on trips and outings, and all the kids we saw there looked happy, which is perhaps the best testimony of all.  It is the closest facility to our home (about an hour and 15 minutes away) and I think our favorite, though we’d be happy with Tradewinds as well.  They were having a tie-dye sale so I bought a shirt for Jonah.

Just like last time, though, I broke down when we toured one of the actual residence homes.  I asked the guide how the transition happens – what it’s like when you cannot explain what is happening, for the kids who probably won’t comprehend or understand.  She saw my anguish and kindly explained that there are counselors there who can talk to us.  Tears streamed down my face as she explained, gently but honestly, that the transition is usually not easy for the child in the beginning – that sometimes a parent might choose to stay at a local hotel for a night or two and visit their child, but after that they ask for a full two weeks where you do not visit, so he is not confused and can become acclimated.

Two weeks.

Andy didn’t see the point of staying at a hotel and said so – I think he thought it would only make it harder, and I see that too – but just like last time, I sat in the back of Kathy’s van and cried when we left.

I don’t think we have to bring Jonah back there to be assessed because they are coming to Wildwood to observe him and then meet with Andy and me, on March 29th.  If they accept him I think they will have openings at the end of the school year – and those new residences will be completed in September or October.

I can type forever about the details of this place or that place.  I can understand the necessity of what we are doing and I can feel like I have accepted that necessity intellectually, more and more as its inevitability draws closer, but then my heart sinks into a sickening darkness and I think oh my God how in hell are we going to pack all Jonah’s things up and drive him to this place and then leave?  I think of weird details like which one of us is going to be able to drive back?  Will we have to take turns so one of us can sob while the other navigates us farther and farther away from our son?

What am I going to say to my mother?  How can I go back to work?  Go to the store?  How can I sleep, eat, breathe, knowing Jonah might be crying for daddy or mama or grandma, knowing he is probably confused and scared?

I feel like we’re planing to commit a crime.  There is an uncomfortable ‘karmic-slap‘ shame in me.  I remember when Jonah was 3 or 4, asking myself what does it take for people to give up guardianship of their children and put them in one of these places?  Who does these things?

Now I understand why.  Now I know who.

Andy told me he doesn’t know how he is going to live through this, and I understood exactly what he meant.

It is all he said.  We don’t talk about it.  We just can’t.

But I think about it all the time now.

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