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"Goals"

Posted by on Mar. 28, 2011 at 12:00 PM
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   Goals

      We went to a meeting last week to discuss the therapy needs of my older son. It was one of those meetings where you walk in already knowing that no matter what you say, they're just not going to approve it. It's very frustrating as the mother of a child with disabilities knowing that there are ways to help your child but that help is not available to you due to insurance coverage- or lack thereof, finances, or  availability of trained professionals in the area. Parents of typically developing children will never know the heart ache and the battles we have on a daily basis just to have something that resembles "normal" life.

     Therapy isn't supposed to be forever. In fact, a good therapy program will end at the point where the individual or family is able to at least cope with the difficulties facing them, even if some of those challenges never fully go away. It should be noted also that there is no need for a therapy or intervention if the individual or family is not bothered by the issue.  I find it is much more common that parents of children with disabilities are, more often than not, failing to receive interventions and waiting ridiculous amounts of time on waiting lists to get services than asking for services that aren't necessary.   

    It's a difficult balance determining when to push and when to accept. For children with autism spectrum disorders, we never fully know what they are capable of doing.  At the meeting we attended, the person running the meeting insisted that we don't "make goals that are above his mental age" in opposition to making goals based on his chronological age.  In some ways this makes sense to me. For example, I don't expect my son to be driving at the age of 16 like his typically developing peers. The thought of that is very frightening actually. I'm practical, if my son ends up collecting carts at Walmart, I'm going to be one very proud parent!

     On the other hand, I do not believe it is asking too much to have a ten year old make his own bed, help sort laundry into "colors" and "whites," or pick up his toys.  I was told that I was asking too much of him and that at a mental age of 3, children aren't capable of doing these things.  I wanted to take out the photographic evidence I have of him doing these things of which he isn't capable. I thought it best to allow her to continue with the verbal diarrhea however, since she didn't really want to see the truth anyway and was hell bent on just cutting services.

   I understand that testing children is the only way to get tangible, measurable evidence of the need for help and that retesting is the only way to prove that therapy actually helped.  Children on the spectrum however, don't do well on these standardized tests for a number of reasons. The main one being that they are verbally loaded. How can you answer a question if you can't understand what is being asked of you? Even the quote "non-verbal" tests require that you understand the question or the directions.  Another not so well noted factor in testing children with autism is that many of their skills are uneven.  They might  only understand certain types of language and do well identifying colors and shapes but not understand what you mean when you ask them to point out the "happy" face.  Many of the standardized tests don't break the skills down into individual scores. Rather, the average of all the different areas are taken which much of the time makes a child on the spectrum appear lower functioning on paper than they are in real life. Unfortunately many people underestimate what they are capable of based on test scores.

   Not every child on the spectrum is a genius and I get really frustrated when someone compares my child to a special they saw on TV or a movie they watched and assume my child is exactly like the person they  saw. Some treatments and some therapies help one child on the spectrum but do not help the next child with the same label. Not all of us have the same resources either so what one child is able to receive, might not be available to another one. For example, we can't afford a personal nanny to work with our son one on one the way the great Temple Grandin's parents did. It is best to remember  the Autism Society's motto; "If you've met one child on the spectrum, that's just it, you've met ONE child on the spectrum."

    I take issue however, in letting testing be the end all factor in helping my child. If I never ask my child to be a ten year old, how will I ever know if he's capable of doing it? If I only ask him to be a 3 year old, how can I ever expect him to progress or know what other talents might lie beneath the surface? I love my son today, as he is and I will always love him. Even if he never does progress past the age of 3, I will love my child. But I'm certainly not going to let test scores and labels determine my child's life.  How well would we all do if our lives were based on the scores we received on the advanced physics exam? What if that score was seen as all there was to who we are? Temple Grandin, Ron Kaufman, Sean Barron, Tito, and Daniel Tammet are doing so well in their adult lives right now because their parents only set goals based on test scores and labels, right? Wrong!

     My child is a person. He's not an IQ score. He's not an autism label. He's not a number. He's not paperwork. He's not a client or participant. My child is Darrian and I think he's awesome! The only limits placed on him should be the ones he places on himself.  ~Destiny Sandoval

    

      

   

      

      

by on Mar. 28, 2011 at 12:00 PM
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mrs.wondergem
by on Mar. 28, 2011 at 12:36 PM

THe last paragraph of your writing made me well up a bit.  I so understand how you feel and I can totally identify.  Just keep on doing all you can Momma.  He is lucky to have a momma like you to help him on his journey.  Hopefully people will start listening to you soon...and if not just keep on until you are heard.  Good luck to you and your son.

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