When Matthew was born our doctors told us that at first there would not seem to be a big difference in his development from other children his age, but as he got older the gaps would become much more obvious. No one knew then how many and to what degree his learning disabilities would be. We accepected the fact our child would take longer to learn to do the things others come by naturally. And there would be things Matthew would never be able to do. We did not know how much we would be able to teach Matthew, but it never crossed our minds that we wouldn't try to teach him everything we could and offer him every opportunity. Nor did it cross our minds at the time how we were going to do all these things!
So far it has been a challenge. Sometimes we become very tired and frustrated and the next minute he surprizes us with a new word or skill. Down's is a mixed blessing I suppose. When you think about it, there are beautiful things about Downs.
One is the memories.
Do you remember the first time you held your own spoon or drank from a glass?
Do remember your first step, your first word?
Matthew was a little over a year old and I was feeding him his favorite food at the time - Apple Sauce. I was trying to learn sign language to teach him and I kept repeating and signing "apple". He was watching intently and I took his tiny hand and shaped it into a fist and placed it on his cheek and twisting it I said "apple". He looked at his hand and placed it back on his cheek and made the sign "apple". I laughed and he squealed with delight! His first word!
From then on, more and more words were added and one day he said and signed "Mama". I cried.
The physical therapists showed me how to teach Matthew to drink from a glass. I placed my forefinger on the top lip and my thumb on his chin to pinch his mouth closed to train his facial muscles. With the other hand I carefully poured the drink into his mouth. He liked this. One day I had to go out and my Mother came over to watch him. When I cam home she was giving him a drink of water - without holding his chin and upper lip. I was upset saying "No No, you have to hold his mouth for him!" She said, somewhat annoyed by my alarm, "Oh! He can do it by himself!" Yes he could, silly me!
Matthew remembers he was three when he first started to walk. He was crawling before that and one day we got a walker with wheels from the physical therapist at school. We stood him up and showed him how it worked. The next thing we know he was wheeling out the front door and down the street at full speed. He was out of control, going too fast, but I tell by the look on his face it was exhilarating. Within a few weeks he no longer needed the walker and was walking by himself.
From the time Matthew was a year old we tried to toilet train him. We knew this was way too early, but we taught him the sign for toilet and when he had to go he would sign to us. We would take him to the bathroom and help him sit on the toilet. One night when he was 4 he woke us up. He had gotten up in the night and his diaper was wet. He went to the potty himself and threw his dirty diaper away. He wanted us to help him get a clean diaper on. From then on we bought him regular underwear for days and pull-up disposable diapers for night. (Remember to keep your receipts, disposable diapers are tax deductible under Medical in the US.) He still has night incontinence, but we have not had to help him with toileting since. And if he does wet his sheets or underwear, he will remove them from his bed and put them in the laundry and get clean sheets or pants by himself.
Matthew remembers the first time he saw the Ocean. The first time he saw snow. He remembers the first time he danced at a Wedding. He remembers his first love. He remembers the first time he spelled his name. The first time he rode on a train.
There are many more memories we cherish and we look forward to many more.
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