Copyright © 2009 Steve Hawley, All rights reserved.
We’re truly lucky in that we are on the right side of the curve for taking care of and raising a child with Down syndrome. John Langdon Down had portraits taken of the people with Down syndrome that he helped care for. I wish I could find a link to the portraits – they are quite stunning, and Down discovered something that was lost in the rise of eugenics: if you treat people with Down syndrome like, well, people instead of locking them up in asylums/institutions, then they thrive and live much longer lives.
Yet eugenics became the in mechanism of social engineering, thanks in no small part to Alexander Graham Bell (http://en.wikipedia.org/wiki/Alexander_Graham_Bell#Eugenics). Ironically, eugenics does little or nothing to change the birth rate for babies with Down syndrome, since Trisomy 21 is a spontaneous mutation in most cases. So what does a eugenicist society do with these babies? It sends them to institutions for life where they are ignored and live short, isolated, lives.
In the 1960’s and 1970’s this changed – Early Intervention is a program that provides intensive therapies for children with disabilities from age 0-3. For the most part, the justification for doing this is pure economics: if you invest the funds up front, then there lifetime cost of these people to the state is less, and in the case of Down syndrome it is likely to be significantly so.
EI is also different, because the model of EI is that services are delivered in the home for the child and for the parents. It’s as much about educating the parents as it is for helping the child. Alice saw a huge team – initially it was a physical therapist and a case coordinator who also did occupational therapies. When Alice started talking fairly early, the coordinator pushed for a speech therapist too. Alice was receiving therapies daily, and sometimes multiple times per day.
The therapists saw us as resources as well. As we learned about the goals of their actions, E and I started tweaking the things that they wanted to make them better. Because of low muscle tone, it was hard for Alice to reach up to midline, an early baby milestone. We were instructed to roll up a towel and use the rolled up section to raise her shoulders and help turn in her legs. After rolling and rerolling the towel a dozen times a day, we took nylon stockings, filled them with rice, tied them off and put them in long tube socks and tied those off. That was our first MacGyver adaptation. I made blocks that were sized for Alice’s small hands. Evie made a rag doll that we could open up and add weights to make it heavier and force Alice to work more. I knocked out a mini lap desk from a cardboard. Evie made changes to Alice’s pants to keep her legs from turning out. I made velcro elastics to do the same job. We modified eating utensils, squeeze bottles to teach her to drink from a straw.
The list goes on and on and on. Meantime, the coordinator was teaching us all the milestones to look for and how to jump start them. She was teaching us how to advocate for our daughter and to prepare us for being parents of a school age child with a disability. I remember one day looking at all the things that we had to worry about and in exasperation, I told the physical therapist that I just wanted to play with my daughter not have to do PT 24/7. She explained kindly that that play is physical therapy. That made it easier.
She was also the one who suggested that a good way to help Alice develop better bilateral gross and fine motor coordination was to put her good side, the one unaffected by he stroke, into a cast. We had a cast made and Alice developed enough coordination to remove the straps holding it on. I MacGyvered up straps from break-away cat collars to hold them on. It took Alice two more days how to figure out how to shake the cast off. We ended up having to get a new cast made that wouldn’t be removed quite so easily.
It was astounding how much of ourselves we put into modifying her daily life in order to give her that extra push that would cut some of the developmental delays that were likely. We took a good hard look at Alice’s greatest weaknesses and her greatest strengths and tried to maximize both ends of the spectrum. We learned and taught her sign language since her low muscle tone would likely delay speech, but it didn’t mean that it had to delay language. We found, with some degree of amusement, that ASL filtered by a very young child with with low muscle tone, delayed gross motor and fine motor was very much akin to baby talk. We could tell the difference between Alice signing grass, mommy, colors, dirty, pig, and water (all are similar signs to the chin), but few other people could.
I think the most stressful thing was the periodic evals that they did. These were two or more hour ordeals where the therapists ran Alice through her paces. Subsequently we got a report that spells out just how bad things were. Alice rarely performed speech/language during the evals, so they thought she was way behind, but we knew differently. During one eval, she only did single word signs until she got hungry and I gave her a few goldfish crackers. In front of the speech therapist, she signed “more fish there, please” Told you so.
It was rough, it was challenging. I don’t think I ever had to draw on so many aspects of learning and having to apply it consistently, but I unleashed my inner MacGyver when I could in order to give that one boost that might spell the difference between having low functioning and a high functioning adult.