While the guys were away visiting, an old friend of mine from the city we used to live in and her husband came to dinner. They’d just dropped off their daughter at camp for a week. There is a fabulous summer program up here in the mountains for kids and adults who have moderate disabilities and is only several miles from our town.
My friend and I, who I’ll call “P”, met when the kids were little—geez about 13 years ago.
We were among the few parents who were fighting for full inclusion for our kids in that school district, and had first met at a teacher’s conference we were–um–auditing/infiltrating, where the main speaker stood up and told the teachers that they didn’t actually have to meet the goals outlined on the students’ IEPs and could just go through the motions, because there was no accountability practice in place. We immediately bonded over mutual disgust.
P’s daughter has Down Syndrome and is a couple of years older than Little Guy. I have so much admiration for her—she was a wonderful role model for me, the neophyte advocate.
We kept in touch sporadically over the years, but last year I saw her daughter’s name at the registration when we checked Little Guy into camp, and we hooked back up. This year, we made plans for an evening at our place.
So several weeks ago, over dinner and wine, I shared Little Guy’s prom pictures, and P “oohed” and “ahhhed” over them. She discussed how she tried desperately to set her daughter up with another student for their prom, but it didn’t work out.
We talked about the hope we both have that our children will find partners—someone to love and share their lives with. We talked about how hard opportunities for dating can be. I asked her if she knew of several couples I’d met through the years (the dis advocacy community here isn’t huge) who have mutual disabilities, met, fallen in love and married.
She said, “I’m so glad to find another parent who feels like I do!”
Her husband cringed. He actually cringed. To be honest, I was a bit appalled at his behavior. P just rolled her eyeballs.
“He doesn’t want our daughter to have sex! Ever!”
I’ve run into this kind of attitude among quite a few parents over the years. Thank HEAVENS Hubby and I are in agreement with each other.
Of course in the minds of parents, our babies will be our babies forever, whether they have disabilities or not. Contemplate the fact that they are also beings independant of us who might one day want companionship, love and yes— sex? The horror!
Little Guy now has a special friend who is a girl. They went to the prom together a few months ago. Since he’s been back from his trip, they’ve gotten together for lunch and swimming dates. Fortunately her parents are on the same page in their quest for social opportunities, so we’ve all been pretty enthusiastic and supportive of this budding relationship.
I’ll call her Hot Cutie, because as Big Kid has said, “she’s smokin’!” She really is.
Like Little Guy, Hot Cutie has autism and some developmental delays. They are both somewhat high-functioning, and for the most part are developmentally in a similar range. I often wonder what they talk about, because although they “like” each other, they don’t have a lot of interests in common.
One week Little Guy was obsessing a bit about getting hurt and crying. I think it’s because of his injury to his hands and the fact that he was so proud of his bravery (ie: not crying). That week Hot Cutie was obsessing a bit about her church, because she had just come back from a retreat.
I played lifeguard and sat at the side of the pool with my book. It was pretty hard not to overhear though, because they both kept trying to include me in their conversation.
Little Guy: Have you ever smashed your fingers? Did you cry?
Hot Cutie: I smashed my toe once and it bled. I prayed and the pain went away.
Little Guy: Did it bleed all over the place? Did you cry?
Hot Cutie: I don’t think I cried. But I healed fast. My mom says it’s because I’m a Christian.
Little Guy: Have you ever poked your eyeball out? Would you cry?
Hot Cutie: I don’t think so. God is watching over me with His eye.
Little Guy: My dog threw up yesterday. I threw up when I had the stomach flu. I had diarrhea too. Did you throw up when you were a little kid? Did you cry?
Hot Cutie: I don’t get the stomach flu. I’ve been touched by the fire of the Holy Spirit and it protects me from throwing up and diarrhea.
[Lovely lovely topic of conversation here. God and Dooky]
Little Guy: A fire? Did you get burned in a fire? Did you cry?
Hot Cutie: No, but I don’t like fire alarms. I get scared.
Little Guy: Me too! The one that scares me sounds like Whooot! Whooot! Whooot!
Hot Cutie: The one that scares me sounds like “Weeeeee! Weeeeee! Weeeeee!”
Little Guy: Have you ever heard an alarm that sounds like “BWWWWWRRRAAAAA!! BWWWWRAAAAA!?” Did it make you so scared that you cried?
So the two of them went on mimicking fire alarms (in an eerily realistic fashion) for the next 15 minutes and laughed their heinies off. Our dogs went nuts and ran all over the yard barking. Our neighbor’s dog went nuts too. We live on the side of a valley, so I’m pretty sure that their antics were echoing throughout.
The neighbor to the left came out on his deck and called out, “Is everything all right?”
I assured him that it was.
After a couple of hours of swimming, and then Taco Bell, we drove Hot Cutie home. I pulled up in front of her house, which has a closed gate at the front of a long drive.
Little Guy (opening his door): Wait there, I have to let you out.
Hot Cutie: I can get out myself.
Little Guy: No, I’m being a gentleman. You have to wait for me to let you out.
She climbed across the seat and got out on his side. They walked up to the gate and opened the latch together.
Little Guy: You have to walk up there fast, because I have to go to the bathroom and I have to make sure you get inside ok.
Hot Cutie: Do you want to use my bathroom?
Little Guy: No, I can wait.
Then he said….Can I have a hug?
She put her arms around him and said in a soft wondering voice…
As we were driving home, I couldn’t help but think how blessed we are that Little Guy has found someone to spend time with. Will it last? Will she be “the one”? Who knows? I’m just grateful.
14 years ago, the “experts” told us that Little Guy would probably never be able communicate meaningfully. Now he’s getting the wonderful experience of having a high school sweetheart.
Mom, are you crying? Are you sick? Do you have diarrhea?
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Although this was originally written a couple of years ago on my personal blog, I couldn’t think of a better way to introduce the “characters” who inhabit my home and my heart. Looking forward to introducing the others and getting to know you and your families in the future!