For an hour yesterday, I listened to my determined 18 year-old genius-child teach her little brother, da Creature, how to do dishes (again). This is installment five thousand on her quest to have him able to do this seemingly simple task safely and well and independently. What struck me was her patience. Mere mortals (myself included) do not possess this level of patience. He IS learning, but after three years of work on weekends and holidays on her part, he is still only half able to sequence and plan well enough to do all the complex tasks involved in safely unloading, then reloading a dishwasher.
He takes these huge mental detours, which drive me up the wall. I want to teach things to him, too, but the constant end-arounds he does to avoid doing things are just maddening. For instance, he likes playing with water. Really likes it. So, rinsing dishes is fun. Really fun. After ten minutes of rinsing the glass that only had water in it to begin with I figure it’s probably good to go. Honestly, it’s probably good for an operating room at that point, but it’s STILL NOT IN THE DISHWASHER.
Do you have lots and lots of full hours lying around your wreckage of a life post-diagnosis of your SPD child, to devote to teaching all the tiny little steps involved in everyday tasks, games, homework, motor skills, OT, emotion work, etc., plus all the hours that are required to get enough repetition under your child’s belt to actually be competent at those things without that horrible sound? You know the one…the sound he makes when he’s frustrated? The rising-pitched whine that escalates to stomping and hitting counters and yelling right at your nose because he’s angry that you didn’t let him quit when he decided it was going to take work and didn’t like it anymore?
Maybe I’m defective. Maybe life SHOULD be made entirely of these hours. Maybe my 18 year old is a better person than I am. Maybe being too old, too tired and overburdened turns one into the kind of person that shrugs her shoulders and gives in when what I really need to do is spend every waking minute teaching him every thing patiently and with enormous repetition. Whinge…
I am grateful that she never gives up.
I am grateful too that she has ALWAYS been this way, since the year she spent forcing him to make eye contact by holding his face and smiling and laughing at him vigilantly for hours each day (she got eye contact at 18months). She also managed to get him to start laughing by the time he was 24 months old (these are developmental markers which were pretty much out of reach, btw, given where his autism/SPD were at the time). She was only 11-12 years old then, mind you, and her explanation for why she did it is actually kind of charming, in a self-interested sort of way… “I wanted him to PLAY with me, and he wasn’t gonna get away with not doing it, so that was that: he was gonna play with me.”
Her goals for this summer are simple: stop him once and for all from toe-walking; play with him everyday; do his OT everyday; make him a functional chore-doing mini-her— you know, nothing complicated or anything. Good luck to da Sister.
My goals? I’m gonna hide over here and balance accounts in Quicken and pay bills and do work and make sure he gets quality sensory input when she’s not doing things with him, and let her have at it. I will, however, marvel at what can be accomplished when someone works so methodically and tirelessly to teach him, and quietly try to calm my fears about school where no one can do this for him, and life which doesn’t wait for you to stop rinsing the one dish and remember to load the rest. In the meantime, I WILL do my part by handing out LOTS of hugs and snuggles and making super good home made food, and spending my hours finalizing plans for our 23 day, 5,000 mile road trip of discovery across America which will begin on June 18th… *smile* She’s got this.







Comments
joyce
Can I borrow your 18yo??
Carleigh Bedell
Depends on where you live…her life plan is to build a new kind of Daycare (at least for around here) that has one-stop shopping for parents of SPD/Autistic/Downs/AND neuro-typical kids (she believes the mix is important).
She is a musician and sculptor and is working toward an OT/PT degree. She dreams of a place to drop off children in the mornings and pick them up at the end of the day and they received quality, fun, and safe amazing OT/PT integrated real art/real music activities with the older after-school kids partnering with the younger day care kids. She would also partner with a speech therapist next door. Parents could then feel safe and confident about letting their kids have a good day while they tend to the business of life and when the day is done…parents get to be parents, and kids get to just be kids.
I have no doubts about this becoming a reality. I wish, wish, wish there had been ANYTHING for my son besides our fortress of doing it all ourselves.
So—if you have the good fortune that she builds her dream near you…yeah! You can have her…if not…maybe someone will build something like it. I could not do what we have done with da Creature without her. I love and admire her so very much.
PS—she managed to land a full-ride scholarship, went in-state to maximize it, and banked her entire college fund so that she’d have the capital to start this business when she gets the degrees.
Jenny From the Block
Your daughter is amazing. Be proud mama. I hope the road trip and summer go wonderfully!
I was just talking with my Mom about how they need day cares for kids who are not quite like the rest. Our PT told us about a chargeof hers who was kicked out of daycare for behavior related to SPD, poor guy. They need a place where they can be understood and helped!
Susan S.
I love the way you write- so clever and funny. And more than that, I love your daughter! Her relationship with her brother is wonderful. Wish my Little Man had a patient older sibling, too. However, he’s my first and my last, so I’m it. Thanks for contributing!
Marcy
Thank you for sharing this bit of your life! Your daughter is amazing, by the sounds of it! May her dreams come true along with the dreams of parents like you and I…to have a place like that for kids like ours.