Home » 31 for 21 » 31 for 21, day 18 “Special Needs”

31 for 21, day 18 “Special Needs”

IMG_9505I’ve always felt like people write someone’s inability to instinctually know how to do something off to mental retardation a little too quickly. In an earlier incarnation of my life I worked with adults with developmental disabilities that had lived the majority of their life in institutional settings and were transitioning into the community. From the time they were wee babes until The State; mind you the same modern day version of the experts who recommended institutionalization to families many moons ago; now felt they might be best; and in a cheaper fashion served in a community setting. Here’s the thing; by having put people who were in the prime developmental periods of their lives into cribs in institutions where it was impossible to receive one-on-one, or even small group setting attention they could have received at home- or at least the attention of a smaller ratio of grown-ups to babies then in the institution if there were other children in the household, it is impossible to base their potential for learning on history’s research. There is no history research that can show the brain’s cognitive ability available that I know of.

It was extremely unusual in the 1950’s, 1960’s and 1970’s  and earlier for someone with a diagnosis of moderate, severe or profound mental retardation to be living in their own home. It did happen but it was the exception. The function that folks who were institutionalized exhibit when moved into the community is not the same level of function that they could be capable of if they had been exposed to the same sights, sounds, experiences as other children growing up in their home. So when the cynics out there suggest that living with a person that has a diagnosis is a major burden to the family and society and ought to be terminated in utero when the diagnosis of Down syndrome can be made;  there is no way that their opinion; which they call fact based on history and research; can apply to modern day life.

There has been a huge leap in the abilities and development of children with a diagnosis of Down syndrome even in the last 10 years since the push to treat them as you would treat other children without the diagnosis. The culprit- Early Intervention. Strategic assessment and focus on areas that appear to be showing a delay in development. Those same cynics would argue that the mere usage of Early Intervention is a burden. One recent cynic has argued that it is only the middle class suburban moms that don’t see it this way. That the majority of families do see it as a burden because they don’t have access to therapies and support that a middle class family does. But of course- one could make a much more generalized argument based on that point of view that merely having children at all is a burden when you don’t fall into the category of “middle-class”. Although strangely this cynic seems to be focusing her attention solely on the diagnosis of Down syndrome and doesn not generalize her view to the population at large. I’m not going to link to her and her recent article here because she has been republishing her ignorant view and appears to be making money off of her exploitation of this view. And there is no need to pad her pockets for her eugenics stance. She’s already touting herself as an expert practicing OB which appears to not be the case. She is a blogging former OB no longer in practice targeting families that are facing pre-natal diagnosis and are already scared and seeking help in deciding whether or not to terminate a pregnancy based on what would be best for their future family member. I feel so sorry for the families that have turned to her for supposed support and expertise.

But I digress in my irritation with this person. As I mentioned I used to work with adults that were recently de-institutionalized. They were people who had previously been seen as incapable and in need of continuous support. When they first moved out and into their community it was easy to see why that was the view. They didn’t participate in any of the typical household activities that non-institutionalized folks did. But that is because they had never been taught how. Over the months with targeted guidance, these individuals began to learn and do the same household tasks that any other adult taking care of their home would. I remember specifically going over to visit a man with a diagnosis of severe mental retardation and very little speech that had moved into an apartment with a helper and one other person with a disability. When I showed up his helper was in the process of helping him to unload his own dishwasher for one of the first times and in the process showing him the name and sign for each of the items. In the middle of this the man signed “bathroom” to his helper who then told him to go ahead and come back when he was done. I know it seems like a silly simple example. But this man had never had the opportunity for such a normal interaction.  He was not given the opportunity to learn language during those critical early years when we all develop language and speech at an astounding rate. He was put in an institution and “taken care of”.

I also have a sister with a diagnosis of profound mental retardation that at a very young age; my family was told she would be best off in an institution. No one was offering services or therapies to help with her development. When I was in graduate school she was reassessed and de-institutionalization was recommended for her as well. Now, many years later she lives in her home with a few roommates and helpers. She gets up and feeds herself at the table with her roommates, she gets out and shops and visits in her community. She laughs and smiles when the sun and wind hits her face. She bounces along to the radio when she is riding in the car and shows a distinct preference for 50’s and 60’s rock-n-roll music; much like my husband. She grins ear to ear when my parents hug her and tears well up in her eyes when she hears their voice over the phone from a long way away on a holiday that they can’t be with her. Thank goodness for the dear staff taking the time to find this out and get to know her.

As a family member of a woman who it was recommended that be institutionalized; I heed the modern day “experts” to not judge the families that went through this most wretched and heartbreaking decision. When an expert tells you this is the best thing for your child; of course you will do it- we all want what is best for our children; and when society views them as vulnerable you especially feel the need to protect them. Fortunately the world is coming around and taking the time to get to know people who were previously viewed as practically non-human. Humanity is finally starting to see the humanness in all people. Over the next few generations the abilities of all will grow by leaps and bounds. New research is being done and people of all abilities are having opportunities to learn previously unheard of.

Some may still argue that is all well and good but it is still a “burden” to have to specialize teaching to the particular way a person learns. I would argue we do that already for all types of people. When a person is tagged as gifted and talented they don’t remain in a standard classroom. The parents wouldn’t hear of it. They want special, individualized opportunities for growth for their children. When a person shows at a young age a particular inclination for a given talent- be it sports or music, their parents and teachers take note and offer individualized training to encourage and aid the learning situation. Your tax dollars go to support these “gifted” folks as surely as they go to support those deemed in need of “special education”.  As an adult I am terrible at reading in instruction manual on how to work a piece of equipment. But if someone can just take the time to show me how they do it; I’ll catch on in no time. On the other hand my husband is best left to interpret the owners manual where he can read it at his own pace rather than having another person show him what to do.  I have a masters degree and he has a PhD. The fact that we have different learning styles does not mean we were incapable of learning. It means someone took the time to figure out how we best learned and supported that. There is tons of research out there explaining multiple intelligences and different learning styles. There is no shame seen in applying this to individuals with average to above average IQ’s. But for some reason some sectors of society have not embraced the appropriateness of this for individuals who are deemed of low intelligence by traditional testing methods.  It seems to me this is where it would be most appropriate and useful.

The other aspect of my career that validates this opinion is my work as a disability examiner for Social Security. I read psychological exams and compare the IQ findings to a persons functional aptitude. More often than not- adult women who show the same lower IQ range then men in the same category retain a higher functional capacity. My self-assessed explanation for this is quite simple really. Our society has traditionally viewed “keeping house” as women’s work. So when a woman with a low IQ was not given the opportunity for a school-based educational experience, if she was not moved into an institution; she was kept at her mother’s knee and taught to cook and clean. The men in the same type of circumstances were traditionally not expected to keep house or cook. Their abilities in function as adults typically reflect this.  This also shows the wide variation of functional capacity in people with supposedly similar intellectual quotients.

As a new mother of a person who will frequently be stereotyped by societies experiences and views; I feel extremely fortunate to have had the background I did so that I can be a little more open to the learning style other’s around me. I feel extremely fortunate that my lovely daughter was born in today’s world when we are a little less arrogant about negating her future potential. While the world may not be entirely open to her yet; I have confidence that through our love and support and by the sheer virtue of other’s good fortune to meet and know her ; the world will continue to evolve and become a slightly kinder and less judgmental place. At least that is my hope for her and others. Not other’s “like her”, just others. Because rest assured; if someone is taking the time to judge her; most likely someone else is taking the time to judge you. Increasing our capacity to understand and know people of all abilities does affect everyone. You may not see that today, or even tomorrow; but someday you will hopefully understand.

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