Wednesday, February 04, 2009

Dear Noah......You Tube viewers keep saying about your clips "he sure doesn't look like he has autism"


AND when I read that I find myself smiling because this is a reflection of your progress.....and yet I am also disturbed....because this reflects the misinformed, uneducated public mindset probably of the majority in our world today. Unless you are exposed to autism or know someone with autism or have a child with autism....it is very difficult to KNOW what it is like......and it is not something you can just always SEE on a child like a broken arm or leg. One has to be around the child to "get it."

When you were really little I did not have a video camera to film many of your issues then. I did start this blog to make note of most significant episodes.....so many of your extreme, struggles were not caught on film or by camera. A lot of the clips I post on You Tube also show you doing positive things or just playing. I did not set out to specifically record you only being "autistic" or doing "autistic behaviors."

I saw this article on CNN the other day and watched the film clips of this young girl with autism and the behaviors her family and therapist were trying to change. You can go here to read and click on film clips to watch

Teen Family Transformed After Autism Intervention

I have to say as I sat here and watched the clips I had tears in my eyes along with flashbacks to when we still lived in Colorado and you were younger.....because HER behavior now was the same behavior you had back then. The preschool teachers were the first to introduce us to the terminology "meltdowns" and anyone with an autistic child knows what they are. They are not even as simple as the everyday child's temper tantrum and no amount of THREATS stops them. In fact, threats only make them worse. At that time you not able to really talk yet to communicate your needs...so your outbursts were frequent. In one of these clips the teenage girl with autism arches her back backwards and screams....and I remember you used to do this......and you would even take it a step further and completely drop yourself down to the ground. You also did a lot of pushing and hitting and biting....knocking things over.

As time has passed and they occur a lot less frequently now if at all......it was funny to me to realize that those memories had apparently gotten tucked down under everything else in my memory....so far that I could barely remember them at all......until I saw these clips.

I remember the screams.......the sick-in-the-pit of your stomach feeling we would get listening to you....not being able to control you or stop you. Wondering if you would run off from school again, or if you we might have to leave a store before we finished shopping because you had a fit. I can only imagine, now looking back, how your teachers must have felt. Especially in a classroom with other children.

What did work for you....was behavior modification.....where we would place more emphasis on the positive behaviors and a lot less on the negative ones. In fact we basically ignored the negative behavior altogether and went about our business....and gave HUGE praise on good behaviors. We learned to substitute a new positive behavior for negative ones. I made up a CALM DOWN book to teach you how to take deep breaths and calm down long before you took any ACTION on your emotions. This was not an overnight accomplishment, but took "years" for you to achieve. BUT you did. You still use that method, but can now control your emotions so much better, and can now express yourself verbally so much better. (I hope I won't be tested on this now today since I wrote this).

Setting up a strict schedule for you to follow and laying out what was expected of you everywhere we went....also helped tremendously. I made up social story books with an outline of what you had to do when you got up for the day.....went to school......went to church or the library or a store. It had pictures and text below the pictures that showed you how you were to behave and what to say or do. EVERY step of the way.....nothing could be left out.

THEN I had to teach you about CHANGES in schedules and how those were okay...something you had a tremendous time accepting.

We also started giving you STOP times AHEAD of time when we needed to stop you from an activity. This allowed us the ability to usually leave the swimming pool or park without you having screaming fits.

The more things like this we incorporated into your day the better behavior you developed. You began to gain more confidence in controlling your emotions and self, even if I was still a bit apprehensive and wondering how you might do if I took you out somewhere.

I could relate to this mother's remarks about how the family just avoided doing certain things or going certain places as they were too difficult for their autistic daughter to handle. How it was just easier to avoid those places or things. We had to do the same for you. We were home a lot.

Slowly I would incorporate a little more things in your day and longer time frames for staying at specific places. There are still some things you do not handle well or that totally over-stimulate you. Those events go pretty well though you can have a harder time. AND the days following those events are totally different here at home...as you can sometimes be a walking zombie in recovery mode for awhile.

I guess today is a day of reflection and thanks. I am thankful we got to learn how to start helping you before you were any older than you were. I am thankful for your progress while still realizing you have a ways to go.

Oh....and I love you.....a lot.

Mommy
XOXOX

6 comments:

Old Lady Lincoln said...

And don't forget Mommy, you took the time to read everything you could about autism , you took the time to help Naoh, you took the time to make things better for him. He has always come first in your life and that's the main reason he is doing so well. Most parents don't know how or can't cope with autism. It's a hard job, especially when you are the only parent caring for him. If his Father were living closer he could help. You found trying to put him in a public school did not work, teachers and staff didn't know how to cope and handle him and his everyday problems that might arise. He did enjoy being around the other children.

I know he enjoys playing with Audrey, but I also know it really zonks him out for a few days. Hopefully by the time he is a teenager, he might be able to cope in a public school sitting if not, perhaps he will do wonderful in a college sitting. Usually people in college are older and more mature.

Have clothes in the washer and dryer. Becky said she's coming over for supper tonight and bringing pizza. Margaret has a Noble Circle Meeting and dinner. I finished using up the chex Melissa had and made a double batch of party mix, from my old recipe. Also baked a pan of brownies from a mix, IGA brand, wanted to try them they are so much cheaper than a brand name kind.

Sun is out shining nice and bright, but it is COLD, I don't know if it ever got above 15 today. Sun is deceiving, makes you think it's warmer then what it is. Chris didn't call, but at least I know he's ok. I guess he's busy.

Talked to Mom last evening, she seems ok, I think she's getting a little stir crazy. She did go to the grocery there in town, but couldn't find a place to park to go to Ben Franklin's, said she almost ran to Greenville, but when she got home Michael called and said he had a doctor's appointment and needed to use her car, I don't know why he couldn't use Marilyn's. I guess she dropped him off and then came back and picked him up.

I hear Debbie is having water problems. Your Dad just went (by himself) to the eye doctor to have his glasses adjusted. He just got new ones. Well have to run, tell Noah we said hello and we love him bushels and bushels and you to Mommy.

Old Lady Lincoln said...

Good grief, I just came back, thinking you had posted something new, and was looking to see the comment if it was mine, you would think I would know how to spell my Grandson's name. I'm always getting letters twisted around. Noah, see I can spell it. Love you

Tanya @ Teenautism said...

Thanks for linking to the CNN videos. I had the same reaction - remembering Nigel's screams when he was younger. His meltdowns have evolved, and often they are still difficult, but at least he no longer screams like that.

TimsMomMom said...

I can also relate to the CNN Video. Up until 3 months ago I was told Timmy was BiPolar, I knew it was something else but no one would agree that the diagnosis was wrong but finally after 3 hospitalizations and me not giving up we have a diagnosis that makes sense. Now I finally know what's wrong, now I can finally do the right thing to help him, now he finally has a chance. It's all thanks to those who have done this before me and posted blogs and comments and message boards. Dear Noah, you are one lucky little boy!

Jack and Joann said...

Your blog is doing the world a world of good. Thank you.

Osh said...

What I love about your blog is how it takes me back to the memories of my own that were tucked away...Thank you.