Tri-9 Mom

One day when Ben was four or five years old I received a call from the executive director at Charles Webb.  Ben had fallen backward while playing with a friend and had bumped his head on a bookshelf

.  When she first told me it didn’t cause any real panic.  Ben’s gait was still unstable and for him falling was a fact of life.  My concern did rise, however,  when she said he had a cut on the back of his head and as a precaution they had sent him across the street to the hospital to see if he needed stitches.  I hung up, called Dennis, and we both agreed to meet at the hospital emergency room.

When we arrived at the Medical University emergency room we were met by a young resident who had been the first doctor to examine Ben when he arrived.  He took us to the room where they were treating him and Ben was lying on a bed asleep.  The back of his head had been shaved and there was a two or three inch cut that had been stitched up.  A flood of emotion came over me when I saw it.  The doctor assured us that the cut looked
much worse than it was.  However, he did want us to look at the x-rays they had taken.   As a precaution when a child falls as Ben did they usually take x-rays of the neck area to be sure there was no spinal column damage.  When they had first brought Ben in, he had been secured by the EMT’s so he could not move around until the x-rays were taken.  The doctor didn’t know about Ben’s unique physical condition when he first looked at the x-rays and thought  the fall may have caused some damage.  He thought he was delivering news to Dennis and me that afternoon that would be life-changing for Ben.  He began to say that the injury could be serious.  Dennis and I at first were in shock.  Then Dennis asked if it could possibly have anything to the cerebral palsy or trisomy-9.  It was clear that the doctor did not realize that Ben had cerebral palsy, and it wasn’t a surprise since no history had been given until Dennis and I arrived at the hospital.  We immediately contacted one of Ben’s regular doctors to come down to read the results and sure enough though the x-ray was not normal; it was normal for Ben.

Looking back I can remember the panic I felt for the short time when I thought Ben may have a serious injury.  I can only imagine what parents go through who are given this kind of news and it isn’t a false alarm.

Ben’s speech therapy during the time we were in Charleston was pretty intense.  We were still holding out great hope that Ben would begin to communicate using words.  Starting out everything was geared toward unlocking that part of his brain.  As time went by it became clear that development of his receptive language and finding alternative ways to help him communicate would be much more productive.  It was obvious that Ben could understand almost everything that was said to him.  We just needed to find a way for him to respond.  We looked at several augmentative communication devices such as the Dynavox and the AlphaTalker.  These products had symbols which represented things that Ben may want to talk about, such as Mommy, Daddy, eat, drink, cars, etc.  When the button with the symbol was pressed, the corresponding word would play.  We hoped that this would not only help develop his speech, but in the event  that he did not begin to speak he would still be able to use the symbols to communicate.  After using the devices at the school, we came up with a much simpler (and less expensive) device which had Ben point to pictures when he wanted something.  This technique served Ben well in the future once he started school.  He became quite proficient at letting us know exactly what he needed , all by pointing to pictures.  As he grew his range of pictures grew.  The therapist also started working with Ben on sign language.  She began by teaching him some of the basic signs like eat, drink, more, finished, etc.  While his ability (more likely motivation) to
learn sign language was limited, he does have certain signs that he continues to use  today

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Speech delay has no doubt been Ben’s most frustrating limitation.  Though he is non-verbal he is quite good at letting us know of his needs or wants.  However, it can be a challenge to understand him; though his mixture of signs, pointing and a few words seem to work for him.  I would recommend to anyone faced with similar circumstances to try more than one communication alternative before deciding on a particular product.  In Ben’s case, he had the opportunity to work with several different devices and ended up
gravitating toward the less complicated.