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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Sunday, May 30, 2010

Learning Together

        Since school started last July, Timmy has made wonderful progress in his communication skills. He is using a switch more consistently and is using words more to let us know his wants.
Looking back over the past few days, Timmy has taught me something that I have failed to realize up to this point. Some of his words have more than one meaning. For example when Timmy says "I more" which means I want more, this same phrase also means I want some. I came to this conclusion upon our arrival home on Friday following his surgery. Timmy's Home Health Nurse, Merry, was preparing Timmy's luch. As Merry sat down to feed Timmy she was describing Timmy's food to him, telling him what he was having, how good it looked, how good it smelled and how good mom said it tasted. Timmy said "I more" this was before Merry had given him his first bite of food. Having heard Timmy say this explained everything that transpired on Thursday evening as we were leaving town.
We stopped by McDonald's so that Floyd and I could get something for dinner. Had his dinner and bath before we set out for Durham. As we pulled away from McDonald's Timmy started saying "I more." I thought that he just wanted to play. So I assured him that after I finished eating we would play. Timmy immediately repeated "I more." Up to this point we hadn't had any interaction together. I had just made sure that his booster seat had been properly fastened in. That Timmy was securely fastened in and I placed his blanket over his lap.  I also explained to Timmy that we were going on a road trip and we would be staying in a hotel, so that we would not have to get up so early to be able to have him on time at the eye center for his surgery.  As I continued to eat, every few minutes Timmy would say "I more" or "Mama I more."This is the very first time that I have ever heard Timmy use a 3 word sentence. Yay Timmy! I have to say I'm so proud of him.
Now that I look back on this it really makes me feel bad. Knowing that Timmy was using the word "more" as a generalization which also means "some" I feels as though I deprived him of something that he may have really wanted. Did he really mean that he wanted some of my food? We will never know. If he was really asking and had accepted a fry, would this have been the time in which he would have actually have given a good effort at chewing? We will never know. It just saddens me to know that I was so ignorant and didn't understand his request. I feel as though in some small way I let my baby boy down. I deprived him of something that he may or may not have really wanted He was probably so confused because I didn't properly address his request in the proper manner. I just kept reassuring him that we would play soon.
I just hope that one day soon I'm granted the opportunity to have another chance of a full conversation with Timmy. And that I'm able to follow through with any request that he may have. I'm sorry Mama's Sunshine! I love ya! Keep up the good work with your communication skills. It may take those around you some time to figure out just what you are saying or requesting with the use of generalized words. But I promise we all will soon figure things out for you as well as ourselves..

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