Today I was talking to my son's school aid. She was telling me how mad she get's when one of the children, or even a teacher makes comments that shock her. Specifically "Can Nicky really read" or "Wow I had no idea he could read", or "Nicky likes roller coasters", "I didn't know he could do puzzles", "I can't believe how good he is at puzzles", "Nicky can work the computer?".
I understand her frustration. She is angry that people, children and adults assume that all children with a developmental disability are incapable of thinking on acting like a typical child on any level. I even understood that she wanted to quip "Yeah, better than you!"
I listened and then I said "there in lies the gift of Nicholas Jones". Our little man; who is amazing on a computer, reads and does puzzles beyond the ability of most of the children around him, did not fit their mold of a disabled person.
So, he is single handedly changing their paradigm's and opening their minds to ideas they never considered. Suddenly every child with a disability is not what they thought. Now they know that a disabled child might be able to do things you didn't think they coudl do and they might even do t hings better than you. So just because a kid can't talk to you, or play with you like the other children doesn't mean he can't do anything.
Wow, my kiddo is helping children become tolerant and understanding. When I was in elementary school children with disabilities were not able to attend school with the general population, so I grew up, ignorant about disabilities. I had no idea how many people were disabled in our community, what abilities they had, what contributions they could make or what it felt like to have a disabled friend. The only word I heard by my peers to describ the kids with developmental disabilities was "retard".
Bottom line, we were not exposed to this segment of our population, and we were certainly not taught tolerance. Much less that we could have a friend with a disability. Today Nicky has friends in his school. The kids look out for him, they are intrigued by his abilities and they help his every day. They think he is cute and very cool. They tell each other how to talk to him and what to be on the look out for. They get very excited by his accomplishments and sad when he has a bad day. So, not only is Nicky blessed to have this great collection of kids who look out for him, but they are blessed to have this great kid who is teaching them about the value and potential of children with disabilities.
I am sure he has changed many a life, but being not what people expected.
Notes to myself and others
When things get bad remember that Nicky's purpose here and all of our kids with autism may be to change how we view people in our society, not thought their limitations but through
their possibilities and abilities.
Monday, December 10, 2007
Saturday, December 1, 2007
The Haircut...
Nicky does not like to have his hair cut, so for years we did little trims. A snip here and a snip there. Not perfect but it worked. Finally it grew to be such a mess I decided to really cut it, with a razor, which was an even bigger mess. So I reverted to scissors. The only way I could get this done was to cut his hair while he was asleep. Waiting patiently to clip clip, and then waiting until he would turn his head so I could get the other side. All the while watching carefully that the sound of the hair cutting was not waking him up. It took several nights and he usually never turned over in a neat rotation allowing me to get his entire head. So my Nicky looked like uncle egg beater and the three razor blades had gotten to him and butchered him. It was so sad. But it was the best I could do and it was cut.
He was getting bigger (as in too big for me to handle and big enough to go out in the community and get a haircut). So a fews years ago haircuts became a part of his behavior intervention. Myself and a therapist would take him to the barbershop and as Nicky sat in my lap, the therapist would shove M&M's in his mouth with words of praise as we helped him stay clam and get through his haircut. He hated it! He hated the sound of the razor, he hated the hair falling on his neck and his cloths, he hated seeing his hair hit the floor. He would scream, squirm, and do everything he could think of to get away. So we held him down and fed him candy to get through. With every hair cut we reduced the amount of candy and slowly over a 6 month period Nicky did calm down. Soon I was able to sit in a different chair and just talk to him, promise a treat if he did a good job, and then he sat and got his hair cut. I was so proud.
One Saturday I showed up at the barber shop and it was closed!!!!! Gone, now what. It had taken months to get Nicky used to the barber. I forgot to mention it too several barbers until we found the one who had what we needed; patience and not to to many clients that meant we always had to wait. We had our guy and now he was gone. Needless to say Nicky's hair grew and I tried to find the barber. 5 months later I found the barber and scheduled an appointment. I took him and his 70's afro to the barber expecting things to be just as they had been six months ago...NOT. Nicky was anxious, but I was armed with candy and we survived.
That was then, today was not such a smooth story. I took him to the barber shop today and it was a disaster. He got in the chair, the barber was able to make a nice cut down the center of his head... and then total meltdown. It took two hours to get his hair cut. He refused to get in the chair, he screamed, wiggled and kept saying "Potty". I took him potty 4 times and each time I returned to the chair we would talk, he would agree to move forward and then the barber would turn on the clippers and then my child would scream for his life. I tried everything, candy, bribes whatever came to mine. I let him sit on my lap, I let him stand up, I held him and got hairs stuck all over my lip gloss. I promised him icecream if he did a good job. I promised him a video at home, anything as I had only one objective fix his reverse mo-hawk because he can't go home like this.
So, I remained calm, thanked god that there were only 9 or so people in the salon and not a long line waiting for our barber. I continued to try everything I could think of as Nicky had me on my knees, back on my feet, holding him in the chair. Finally we feel into a routine of counting and we got the job done. At one point I noticed that 1/2 the people in the salon were counting with him...and that was kinda cute. I'm not sure if they were doing it for him or for me, but I could tell them were invested in seeing this little guy survive the barber. He finished his cut and a young man handed him a dollar bill! Nicky doesn't know much about money so I said "Wow Nicky, he just gave you a dollar for Ice Cream" and Nicky said thank you and proceeded to drop the dollar on the floor. I had to take it, not for Nicky but for the young man with the pained look on his face, who so wanted to help. I paid the barber, gave him a big tip, picked up the dollar and with a big sign left the barber shop.
Note to myself and others:
Don't let important routines fall by the wayside...our kids will loose their skills
Don't forget to talk about the haircut days in advance to reduce the stress of such an undesired task.
Remember that people can feel our pain
It does work out, even when it looks like all the odds are stacked against us
BREATH.............always breath.
He was getting bigger (as in too big for me to handle and big enough to go out in the community and get a haircut). So a fews years ago haircuts became a part of his behavior intervention. Myself and a therapist would take him to the barbershop and as Nicky sat in my lap, the therapist would shove M&M's in his mouth with words of praise as we helped him stay clam and get through his haircut. He hated it! He hated the sound of the razor, he hated the hair falling on his neck and his cloths, he hated seeing his hair hit the floor. He would scream, squirm, and do everything he could think of to get away. So we held him down and fed him candy to get through. With every hair cut we reduced the amount of candy and slowly over a 6 month period Nicky did calm down. Soon I was able to sit in a different chair and just talk to him, promise a treat if he did a good job, and then he sat and got his hair cut. I was so proud.
One Saturday I showed up at the barber shop and it was closed!!!!! Gone, now what. It had taken months to get Nicky used to the barber. I forgot to mention it too several barbers until we found the one who had what we needed; patience and not to to many clients that meant we always had to wait. We had our guy and now he was gone. Needless to say Nicky's hair grew and I tried to find the barber. 5 months later I found the barber and scheduled an appointment. I took him and his 70's afro to the barber expecting things to be just as they had been six months ago...NOT. Nicky was anxious, but I was armed with candy and we survived.
That was then, today was not such a smooth story. I took him to the barber shop today and it was a disaster. He got in the chair, the barber was able to make a nice cut down the center of his head... and then total meltdown. It took two hours to get his hair cut. He refused to get in the chair, he screamed, wiggled and kept saying "Potty". I took him potty 4 times and each time I returned to the chair we would talk, he would agree to move forward and then the barber would turn on the clippers and then my child would scream for his life. I tried everything, candy, bribes whatever came to mine. I let him sit on my lap, I let him stand up, I held him and got hairs stuck all over my lip gloss. I promised him icecream if he did a good job. I promised him a video at home, anything as I had only one objective fix his reverse mo-hawk because he can't go home like this.
So, I remained calm, thanked god that there were only 9 or so people in the salon and not a long line waiting for our barber. I continued to try everything I could think of as Nicky had me on my knees, back on my feet, holding him in the chair. Finally we feel into a routine of counting and we got the job done. At one point I noticed that 1/2 the people in the salon were counting with him...and that was kinda cute. I'm not sure if they were doing it for him or for me, but I could tell them were invested in seeing this little guy survive the barber. He finished his cut and a young man handed him a dollar bill! Nicky doesn't know much about money so I said "Wow Nicky, he just gave you a dollar for Ice Cream" and Nicky said thank you and proceeded to drop the dollar on the floor. I had to take it, not for Nicky but for the young man with the pained look on his face, who so wanted to help. I paid the barber, gave him a big tip, picked up the dollar and with a big sign left the barber shop.
Note to myself and others:
Don't let important routines fall by the wayside...our kids will loose their skills
Don't forget to talk about the haircut days in advance to reduce the stress of such an undesired task.
Remember that people can feel our pain
It does work out, even when it looks like all the odds are stacked against us
BREATH.............always breath.
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