Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Friday, January 8, 2016
Stuck
Dr. Seuss from Oh, the Places You'll Go
The Waiting Place...
...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or the waiting around for a Yes or No
or waiting for their hair to grow.
Everyone is just waiting.
Waiting for the fish to bite
or waiting for the wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.
(There was a year when Alex recited the lines from this book over and over and over again until we had to ban it from the household. But I still remember.)
So the plan was for Alex to have one day to say good-bye to his friends at Hartford, That was January 4th. On January 5th, Alex and I went together to visit Archway Upper School with his case manager and one to one aide. On January 6th, Alex was supposed to start attending Archway, his aide with him for the rest of the week. But there was a hitch.
Late on January 5th, Alex's case manager called to say Archway wanted to wait. So Wednesday, Alex stayed home with me and then went to Grandpa's to read The Empire Strikes Back to him while I went to physical therapy, and then came back home with me. And we waited. After school, his case manager called to say Archway was delaying because they wanted to be sure they put him in the right classroom. What they wanted was the results of an interview with the school psychiatrist to help them to do this. That appointment was scheduled for January 7th. And since the report from that wouldn't be immediately forthcoming, Alex needed to be put into homebound instruction. This means a Mt. Laurel teacher would come to our house after school on weekdays to sit with him for approximately two hours to have some semblance of "school."
So, Thursday Alex sat in the car while I ran into the library and then went to Target with me to pick up some groceries and school supplies (we were out of plain paper which Alex uses for drawing which is his most common stim and heaven help us if we run out) and then home again. About 2:30, we left for the psychiatrist appointment because the letter said to be 10 minutes early except we didn't need to be early and ended up sitting for about 25 minutes while Alex glanced at the toys and went through the stacks of books and magazines at least 3 times. Yes, of course, we'd brought a book with us but he always wants to check out his options. I think they write the "Please come early" phrase for the people who aren't obsessively on time to important appointments like myself. I am usually on time for doctor appointments, even with children in tow. Sunday morning church, we often walk in 5 minutes late.
Anyway, we met with the psychiatrist and he was very helpful. He asked me why I thought Archway would be the best placement for Alex when we do have other options and I told him it was because the place was quiet. One of the primary causes of Alex's anxiety at Hartford this year has been from all the transitions: homeroom for ten minutes then gym then his main class then the secondary class then the main class then back to the secondary class. But he needs to be in a class of his peers, students that talk and relate, rather than the self contained class of the last few years. Archway should provide a small classroom of similarly abled peers in a quiet and safe environment with a calm down room just down the hallway.
That brings us to today, Friday, January 8, 2016. He's presently working with his homebound teacher who much to my relief knows how to cope with him and his constant attempts to get out of doing anything substantial. She will be back Monday afternoon as well and then we have some old friends coming Tues-Thurs. Hopefully, by then, everything at Archway will be settled and we can go back to finding our new normal.
In the meantime, we are waiting. I love to imitate Inigo Montoya from The Princess Bride, "I hate waiting." I can do my regular stuff around the house of dishes and laundry, which I have. Wednesday morning Alex and I cleaned his room, which was particularly bad. The pile of paper that went into recycling (all his stim drawings and leftovers) was twice the usual size and I didn't even dig out the whole pile from under his bed. I didn't want to know how many cheese stix wrappers and crushed chips were under there. I think I found all the dirty socks and dishes and that's what's most important.
But everything else has to be done with Alex along or have him safely disposed with a grandparent or aunt. I didn't think I was that busy but I have something on the calendar for every morning next week. That will take some arranging.
But all the physical machinations are a good cover for the emotional ones that I'm not really looking at. The part that makes me second guess all of my parenting decisions for his entire life. Should I have chased new doctors or a new neurologist? How long will we have to wait? Is Archway really the right place for him? Will it work forever or just for a school year or two and then we'll have to do this all over again?
Waiting.
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