This photo was taken after a year of working with him. This was his first time at being able to sit at a table and eat. See his thumb. I had just asked if he wanted more food and he answered yes by giving me a thumbs up.
1p36 Deletion Syndrome
These are the eyes of a very talented and determined child. He has 1p36 deletion, but has accomplished more than the doctors and therapist ever thought he could. I had the pleasure of working one on one with this child. I have been given permission to tell his story. In the near future his story will be told.
Parenting a child with 1p36 deletion is a challenge, but the reward comes when you see them accomplish even the smallest milestone.
Before I go into my story, I want to recommend reading the following books:
"The Child with Special Needs: Encouraging Intellectual and Emotional Growth" written by Stanley I Greenspan, MD and Serena Wieder, Ph.D.
"Kids Beyond Limits: The Anat Baniel Method" written by Anat Baniel
Both of these books explain the methods I used with Tripp. I had not read them before working with him, but was amazed when I read them that they stated several of the methods I used.
Before I go into my story, I want to recommend reading the following books:
"The Child with Special Needs: Encouraging Intellectual and Emotional Growth" written by Stanley I Greenspan, MD and Serena Wieder, Ph.D.
"Kids Beyond Limits: The Anat Baniel Method" written by Anat Baniel
Both of these books explain the methods I used with Tripp. I had not read them before working with him, but was amazed when I read them that they stated several of the methods I used.
My experience with Tripp
While working with Tripp, the first thing I did was to learn how a child with 1p36 deletion takes in, processes and responds to their learning environment. What I found, didn't help much, there was little information because most don't live past three years old, because of seizures So my next step was to learn all about the types of seizures these children have and what they look like. I studied what to do when the first signs of a seizure show themselves. Later I will put an article on here about the seizures and how to recognize the signs.
The next thing I did was take time to observe him and take notes on what he could and couldn't do. Then I went to my developmental checklist and marked what he had accomplished and where he needed work. From that I could sit down and make a list of activities that would help improve the needed milestones, one at a time.
I had been told repeatedly that he would not be able to do some of the simplest things, like crawl or hold a spoon. I refused to believe this. I watched the therapist that would come and work with him. I took notes and asked questions about the techniques they used. I took my college course and geared them toward learning how special needs children learn the best. My determination was to see this child and all children become all they can become.
I sat on the floor with him daily, working towards one goal at a time, and each time he learned a new skill, his self esteem built. Don't get me wrong there were days when he absolutely refused to try, he just wanted to be left alone. Those where the days I had to work the hardest so he wouldn't give up on himself. We found a way to communicate with each other, even though I had been told that he couldn't use his hands for sign language, I taught him some of the basic answers he needed.
For the next section of his story come back next week.
The next thing I did was take time to observe him and take notes on what he could and couldn't do. Then I went to my developmental checklist and marked what he had accomplished and where he needed work. From that I could sit down and make a list of activities that would help improve the needed milestones, one at a time.
I had been told repeatedly that he would not be able to do some of the simplest things, like crawl or hold a spoon. I refused to believe this. I watched the therapist that would come and work with him. I took notes and asked questions about the techniques they used. I took my college course and geared them toward learning how special needs children learn the best. My determination was to see this child and all children become all they can become.
I sat on the floor with him daily, working towards one goal at a time, and each time he learned a new skill, his self esteem built. Don't get me wrong there were days when he absolutely refused to try, he just wanted to be left alone. Those where the days I had to work the hardest so he wouldn't give up on himself. We found a way to communicate with each other, even though I had been told that he couldn't use his hands for sign language, I taught him some of the basic answers he needed.
For the next section of his story come back next week.
STORIES WANTEDI want to hear your story of beating the odd. Please email them to me at [email protected] or go to the home, drop down to contact and send it to me that way.
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List of Deletion syndromesPlease post down below the deletion syndrome your child has. This will be updated as I get them.
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Never Underestimate a childs' will to do something.Tip: Sit on the floor with the child and help them learn to do the simplest thing. Like roll a ball or to sit up.
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