Today there will be no graduation ceremony or reward after over 21 years of continuous baptism-by-fire study, which more often than not kept us awake nights and hyper-vigilant most days. I remember on one of these days, after having washed a few dishes, I immediately checked on Joey in his room and he was stretched-out on the floor, post-seizure. The guilt was horrific. When he is home, you listen or else.
Our marriage is intact and happy after over 25 years. Joey is still happy and intact after 21. We did our best and have beaten the odds.
Maybe the reward is the sword that cuts both ways.
On the positive side, Joey will be moving to an apartment with 4 or 5 roommates near his age and a full-time staff that is “fresh” as they work in shifts. We will no-longer be sleep-deprived, listening with one ear open all night for grand-mal seizures, or awakened by him for the many other reasons that he chooses – running around clapping his hands, turning on lights or our TV to use as a night light, or one of our favorites: the power went out last week as he had awakened to watch a movie at 3am and he stumbled into our room to say repeatedly, “The TV is broken?” Our answer “The power is out,” just wasn’t cutting it for him.
There will be nursing on-hand 24-hours to help him if he is found banging is head open, blood splattering everywhere. Staff will help him with his contentious post-seizure temper and clean him up for follow-up care. We will have him home to visit often but as we have heard, he will want to go back to his own space once he has gotten used to it. The facility and program is the best that we could hope for: a large, private room of his own and community rooms with comfy chairs.
But, as I said, the sword cuts both ways. Joey does not always come into our room at 3am. He often joins us in the living room, sits next to one of us, tells his version of a joke, relates who got into trouble during his day program, or tells us what present he wants for the next holiday. He says “I want Mommy’s eye,” and gently holds each side of my head, touching his nose to mine, staring into each eye for about 30 seconds. His alternative for wanting a hug is “I wan’ hair,” even to bald Daddy, which means that you touch foreheads (as the Conehead family did back in the ‘70s). He loves to make conversation by switching incorrect vowels for correct ones, such as “I want to oot some pizza,” or entire syllables, such as Poch-a-ploop-as for Pochahontas.
The other day, we were going to an exciting event for a short time. He saw Dad dressed to go out, smiled and said “Dad has to go to work.” (He loves Dad very much, that’s just his way.) He saw me dressed to go out and looked betrayed as if to say “Et tu, Mommy?” I said, “Just go to bed when you are tired. We will be home before it is dark outside,” and he was fine. (A few friends were here to look after him.)
I once told an old friend, “It could be worse.” She said, “How?” I never responded. Autism is not something you want but something you get. And it not only does not stop you from loving them, it does not stop them from loving you.
No award for surviving tantrums, bed-wetting, bathing, teeth-brushing, med-giving, feeding, not being able to use him as a slave to mow, shovel snow, vacuum…. Yet I know his leaving is going to leave a hole somehow, and the scary part is that I do not know how that is going to feel until it actually happens.
He is too old to hang with his parents. It is time to get back to our marriage and not have to pick him up by 6pm. Although the following was written for a different reason, I heard it with tears and thought selfishly of me. We are told repeatedly “Oh don’t worry, you will feel so free and he will love moving.” I am thinking of the day when we do not actually say “Bye-bye” but that is exactly what we are doing.
“ ….I’ve been afraid of changing / Because I’ve built my life around you. / But time makes you bolder / Even children get older / And I’m getting older too.”
“Landslide,” Stevie Nicks, Reprise Records 1975