07 July 2012

Carrie Fancett Pagels - Overcoming ASD One Step at a Time



The Bus Ride in Charlottesville
We’d made it through five years, numerous doctors, over three years of occupational and speech therapies, diagnosis of ASD, special education pre-school program, and medication to manage the severe tantrums. And we had a new normal—absent the screaming melt downs and bizarre behaviors. Then Sissy went to college.  Some setbacks. But that was about to be remedied—Sweetie Boy and I made a road trip to the college. My little fellow sat in the back of the van, watched videos, talked with Mommy, and even stopped to go to a fast food restaurant on the way. Whew! Was breathing a sigh of relief.
[Area Photo]
We parked and found our way to the International dorm, where our then 18-year-old daughter stayed her first year at the University of Virginia.  So far so good.  She suggested we try a couple of kid-friendly activities in downtown Charlottesville and said there was excellent bus transportation.  So we walked to the corner and got on the bus.  Which was crowded. And loud. And strange. Sweetie Boy clung to the two of us.  We got to our stop and walked to the Children’s Museum, which he enjoyed. Then went to get something to eat.  By now Sweetie Boy was getting tired and not so sweet.  Time to head out.

Return trip, crowded, loud, strange, slightly smelly, and loaded with people who stared at my little guy whenever he did anything slightly different from what five-year-old boys were supposed to do on a bus. My daughter became silent. Honestly, I don’t even remember what all of his odd behaviors were back then, but probably some repetitive stereotypic behavior was happening.  And I kept thinking—he’s been doing so well! Our new normal, though, wasn’t good enough for this college town crowd. We got off the bus discouraged and went to get our van.

Except that as I approached the van, someone else’s car was hanging off of it in the garage, literally.  A teen driver pulled in too close and got his vehicle hung up on mine.  So I have a five-year-old child with ASD who has just had a trying day and who has to be watched unceasingly who is in a garage with all these cars going through and a police officer trying to get things straight.  I was ticked.  Someone’s split second decision to pull into a too tight space was now about to blow the top off the rocket that had a slow burn going all day.  I sent Sweetie Boy outside with his sister and urged her to not take her eyes off of him for a second (he was a runner). Two hours later we finally hit the road.
 
Any parent of a special needs child should be able to relate to what I am talking about. It’s that reminder that all the improvement isn’t good enough for the world. That problems are still there. But sometimes we need that reminder so we don’t have expectations that are too high.  I needed that reminder then as we began our new school year and adjusted to changes at home.

What about you?  Do you have a loved one with special needs?  How do others react when your loved one doesn’t behave according to their expectations?

11 comments:

  1. Thanks for your post, Carrie.
    The parent of a special needs child is continually confronted with adults who don't understand that the questionable behavior is not something you or the child can necessarily control. Learning about the particular disorder and how how to work with it and teaching coping mechanisms are critical for the child and all family members as well as educators. As adults, we are just as sensitive to peer pressure as kids are. There is so much we can learn as a result of having these special kids, like patience, humility, empathy, and not being judgmental ourselves -- which is not a bad outcome.

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  2. JANET, you are such a blessing to me! Thanks for coming by to comment and encourage! It is true--at the time I feel pretty sure my son was oblivious to the stares etc. (not now!). I pray that all those characteristics you named are ones I possess a little more fully now. I know you do! Blessings!

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  3. I wrote quite a long story and suddenly it's gone. :( I don't feel like typing it again... sorry!

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  4. Oh no, MARIAN!!! Thanks for thinking of me and trying, though!!! Hugs!

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  5. Thank you for sharing your heart with us, CARRIE, with something I know so little about. It amazes me with all you have to deal with concerning your child, that you still find the time to do so many things for so many people. And I love that sweetie boy is able to do all the things that other little fellas get to do, such as boy scout camp, etc. You are such a good mommy. My daughter use to throw temper tantrums so much in public, I got to where I didn't want to take her anywhere! And she wasn't even a special needs child. I was very young, though, perhaps now I would be better equipped to deal with that type of situation, but then again??? May God bless you and strengthen you!

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  6. Thanks, DIANA!!! I am so glad sweetie boy is doing so much better. I was thinking about that long ago bus ride and wanted to post about it. I know there have to be families who are traveling with kids who face similar issues.

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  7. I can say that for us, as the years went by with our Amy, people didn't respond any better to her as she got older than they did when she was young. She cried. A lot. Made noises that were loud and weird sometimes which drew lots of attention to all of us. My husband handled it the best. He just ignored them. Usually I handled her and the extra attention rather well, but I remember one time stopping mid-stride in the mall and telling a woman who was walking backwards and staring at Amy, to take a picture, it would last longer :) I know. Real mature of me.

    I do think that educating the adults is the best place to start. Most kids ask out of honest curiosity, but adults have a tendency to stare or make rude comments.

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  8. ANNE, thanks for coming by. I know you are missing your sweet Amy. I don't blame you. I one time screamed at a Busch Gardens' train engineer, who was fussing at me because I was trying to get sweetie boy, in a stroller, onto the train and had to unfold it. People can't necessarily see when a child is on the spectrum. They think you are babying your kid. At that point, if he had not gotten on the train he would have screamed, uncontrollably, all the way from the park and all the way home (about 30 mins. drive).

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  9. When I worked in the schools, I often worked with special needs kids. I remember once after a particularly tiring day telling the man I was dating at the time about the day's challenges in my Student's behavior. My friend responded, "Can't you just make him behave?" My friend was a computer programmer, clueless about specail needs. So many people are. But thankfully, not as many as years ago.

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  10. Pick me! Pick me! I have not read this author. Kathleen
    lanehillhouse[at]centurylink[dot]net

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  11. Oooops... I was wanting to click on the Veil of Pearls!
    I worked in schools for twelve years with special needs students. A sense of humor goes a long way ~*~ on both of our parts!

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