I forget to blog about him because Sissy's needs are so polarizing that usually when I sit down to this computer, blogging about Sissy is the only useful way to get her crap out of my head and off my aching heart.
Oh Sissy... *sigh* I asked her last night during a RAD fest, "Just wondering if you could clue me in, give me a time line or something, you know, so I can prepare myself. Exactly how many more days, weeks, months or years do you plan on behaving this way? Because it's getting boring, old and irritating." She agreed that yes, it WAS getting old but she never gave me an answer. Her "answer" ended up being more RAD fest which flowed over into today like a bad hangover. Fun times.
When it comes to AB, I forget to mention all of his "stuff" that I need to do for him because it's rote. And because he doesn't make it hard for me to do for him. I WANT to do for him because he does something back for me, he loves, he helps, he's funny, he's kind, he's truthful, he obliges, he thinks ahead and thinks for himself, he tries to be aware of his environment (which is VERY hard for spectral kids!!!!), he showers me with random affection in gigantic ways. He's just such a cool kid.
I tell people that I have to parent two challenged kids in two distinctly different ways and those people usually nod their heads and say, "oh. wow." and I smile back because what does that mean anyway, parenting in two different ways?
It means I have to help AB with his AFO's. We tried letting him do it himself, he wasn't doing it correctly and was hurting his feet. It means at age 10, AB still needs help bathing. It means AB sometimes wets his bed. It means he sometimes needs naps. It means he needs LOTS of sensory input. It means I have to provide opportunities and devices for that input. It means he has to be spoken to and addressed in specific ways with clear, tersely worded ways. It means he has to have homework help. It means he has speech impairments. It means he has trouble writing and reading and doing math. It means he is sometimes threatened by his kid sister's academic achievements. It means he doesn't have friends over to play because it's not something he typically thinks about. It means he is AMAZING at art and I have to keep him amply supplied (which is tough to do! He runs out of blue A LOT). It means he needs a vibrator chair and a weighted vest and a trampoline and compressions and a surgical brush for desensitization brushing and he can't sleep unless someone has rubbed his back. It means he burps loudly and has difficulty swallowing so he can never eat alone because he's ALWAYS choking. It means he has quirky bowels so we never know when AB runs to the bathroom if it's going to require a complete wardrobe change and a hazmat cleanup. It means an IEP and medications to treat both his mental health concerns and his physical issues. It means a life time of people not understanding my beautiful son and a lifetime of The Dad and I advocating for him so people can learn to understand this beautiful soul like we do. It means planning for his future TODAY because we have NO IDEA what his future will look like. We only know it won't be a typical young man's future. It means we hope that whatever his future is, he will never be very far away from us because that makes us worry just thinking about it. It means he's vulnerable and innocent and susceptible.
It means I love him.
Today in church (yes, we went!) a young couple in front of us had their infant son who was gassy and fussy. I smiled. I remembered those days. AB's little GI system was so fragile it took until he was 10 months old for him to drink and keep down an 8 oz bottle in one feeding. I remembered jiggling and jostling and rocking and pacing and holding and soothing and rubbing and moving AB for 12 straight months. He couldn't be still. I almost laughed out loud thinking of it this morning because now AB does all of that movement for himself. Skippy Slappy Flippy Flappy is his new name currently. Wow. Stimming hell. And the ticks. He's always got some weird tick. Currently it's twisting his neck in a jerky head movement so it will make a cracking sound. Makes The Dad want to puke. LOL
I try not to daydream about Sissy and AB's futures because that's scary and idealistic. Truly, we don't know what either of them will be able to do. Currently, group home or assisted living seems like a good option for both of them. But sometimes The Dad and I talk about maybe keeping AB closer to home than that, maybe setting him up in a loft on our property or something like that. We think about him coming to work with us and we think about how we might use his art skills as an employable task. But the other day I let myself daydream. I imagined AB having a wife and the two of them living in a mother-in-law type suite that we'd build for them and AB and his wife coming for supper or the two of them making supper for us and it was beautiful. I savored it for just a minute and then put the thoughts away. Scary. scary, scary. I don't want to have ANY expectations, hopes or dreams. I just want AB to be happy.
And that's life with
AB was awarded "student of the month" this Friday. His picture is on the bulletin board outside the principal's office. "AB is respectful to others and is the most improved student." Of course, his expression in the photo is stoic, straight mouth, almost angry but I knew the truth. He was so happy he couldn't contain it. "See mom" he paced. "They had to take my picture. She put it here." I thought I would cry.
I could parent 100 more kids like AB. I could do it with flair and pizazz. I seem to have a knack with spectral issues, I guess I can call it a strength. WG and AB both say we should adopt another boy, "four, mom, that's how old he has to be," said WG last night. Maybe we should. Maybe he should be a child with a spectral disorder. "Just ask God then, WG, if you're so sure that's what our family needs." So if you have any questions about your spectral and/or genetic-syndrome kids, ask away. I just might surprise you (and myself) with some much needed help.
2 comments:
Love that son of yours. You need to send me a pic of that bulliten board...I want to see it. I can totally picture/hear him saying those words.
Aunt Jenn wants a pic of the bulletin board for her scrapbook, please! :-)
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