CJ was born with severe brain damage, Dandy Walker Cyst, Absent Corpus Callosum, missing ear and 5th and 7th nerve palsy and is deaf and blind. He was born seizuring and required a loading dose of Phenobarb soon after birth. He was shunted at 2 days old and had a very difficult beginning in life. His birth Mom was very young and he was taken into care. He spent the first 5 months in the hospital and then went to a group home for disabled children. He came to live with us at 2 years old. He was such a cute little guy. We knew he was cortically visually impaired and had very questionable and sporatic vision. He seemed to see object that were very close to his eyes and moving. We didn't know he was deaf until he was tested at 4 years old. He seemed to respond to sound. You could never sneak in on him quiet enough to check him at night. It always woke him up. We were certain he had some hearing in the missing ear as he seemed to even hear out of that side. Our hope was that if he did have an inner ear that functioned an opening could be made to improve this. He was tested in the sound booth and his responses were not good so they scheduled an ABR. The test results from this were a real shock to us.
He was completely deaf in the missing ear and severely deaf in his other ear. I was shattered all this time we had been talking to him and he couldn't hear a thing we ever said. Since he was blind I always told him what was happening to him -(going in the bath etc...) All the way home from the hospital I could hardly drive for my tears of sadness, but something occured to me, that if he couldn't see or hear and he was developing he must be fairly intelligent. We had always thought he was very mentally challenged also.
When I got home from the hospital. I received a phone call from CNIB and a person trained in working with families of deafblind children had heard about CJ's diagnosis. She was very helpful and shared with me many ways we could teach him to communicate. I was actually encouraged. As the days went on and I realized that CJ was picking up vibration and the feel of our wind as we walked near him. I watched him to see what he seemed to understand. He always startled when I picked him up quickly or put him in the bath. We started using a system of touch cues to give him some warning of what was happening to him. Touch Cues
CJ responded very well to these new touch cues. His world started to make more sense to him and he relaxed more as he wasn't getting startled all day with quick movements and no preparation. We also started signing "All Done" with him/ hand over hand. He figured this sign out very quickly and soon he was ALL DONE everything that he didn't want happening to him. The funniest situation was one time a DR. was examining him and CJ wasn't impressed. He was frantically signing all done and the DR. asked what this repetative hand movement was about, so I told him, he is telling you that he wants you to be all done examining him.It was nice he finally had some expressive communication.
CJ was in a preschool at this time and we were preparing for him to enter Elementary school. This was going to be a big challenge as I was very uncertain how he would be recieved at the local school also what would they do with him all day? I attended several planning meetings and finally the big day came for him to start school. I had a big speech all prepared in my head for the confrontation I expected from other parents as to why a child so handicapped shouldn't attend school and take up all of the teachers time. I very happily never had to say my speech. CJ was very welcomed into the school. The kids loved him and his aide was wonderful. She was very creative and inventive.
At school he had an aide and several consultants to give her advice on his communication etc. It was decided he would use object cues ( I will put a future link here detailing his cues) to inform him of what was going to happen for him. These cues would be presented to him at the beginning of a task and taken when the task was finished. He had cues for everything and they were all paired with the corresponding sign. Since he had some vision we signed very close to his face. This was all so new to him and he didn't seem to understand anything. One day I put his pack on him -"the cue for going to school" and he signed school. I was amazed. I couldn't wait to get to school and tell them. Now he had 2 signs - school and all done. This was a huge milestone.
The next huge milestone in his education was toilet training. He always hated to have a wet diaper. He started to pull on his pants when he was wet so we would change him right away. A few times he wasn't wet when he pulled on his pants and we realized maybe he had to go. Well sure enough when he was dry and pulled on his pant we put him on the potty and he went. By the end of the first year in school he was completely toilet trained.
Cameron's first and second years in school were his best years. During his grade 2 year was when his ongoing self abuse CJ's Self Abuse destroyed his vision entirely. From this time on things went down hill for CJ.
During the the spring and summer of 1996, CJ's epilepsy became very out of control. He had many lengthy hospitalizations and required large amounts of medications to keep him out of Status seizures . In Sept of 1996 the school refused to allow him to come back as his seizures were too out of control. He had already lost some of his skills and communication from the endless seizures and loads of medications. In October of that year we started CJ on the Ketogenic diet. He was very sick initially but as his body got used to the diet we saw small improvements in his seizure control. We started to wean him off the seizure medications as they really weren't helping anyways. To our surprise the more medication we took CJ off the better his seizure control became. By December of 1996 he was totally off all seizure medications. He was still having numerous daily seizures but for the most part they weren't going status.
We had an uphill battle against us to get him back into school. The school district didn't want responsibility for him at school. We spent the next few months planning how to safely allow CJ back in school. CJ's aide was trained in seizure management. We got a cellular phone that would be with CJ at all times in case of emergencies (which by the way has never been used). And I had to agree to be always on call at a moments notice to go and get him if things started to look bad. CJ went to Grade 3 for the first time after Spring Break 1997. We started him back 1/2 days and by summer holidays had worked back up to full days. It was like starting over again for all of us, especially CJ. We still hadn't come to terms with his total vision loss and how we would now communicate. The seizures completely took over that year of his life.
In British Columbia, where we live, we have a great school support program, B.C. Provincial Outreach Program for Students with Deafblindness and also a Summer Intervention program for the months they are out of school in the summer. All of these supports and the persistence and patience of his Aide at school really helped get CJ back on track.
Grade 4 has been a great success so far this year. CJ loves school and loves his Aide at school. She has a wonderful way with him and I hopes that one of these days she will be rewarded for all her efforts and he will sign "Good Morning" to her as they have been working on that for 5 years now. It has taken us until Christmas for him to catch up to where he was the last year in Grade 2. Since then things are steadily improving. This year so far the seizures and self abuse have taken a back seat once again to his deafblind issues. We are continuing to forge ahead with the endless task of teaching CJ how to communicate and find his place in this world. A few things we are working on right now are - getting CJ a Companion Dog - teaching him to make choices between activities that he would like to do - we are going to be teaching him some more tactile signs.
CJ is a bright little guy. He is exteremely challenging and I think he has great potential( of course I am his Mom so I would). He is very stubborn and wants what he wants NOW. I just wish we could get him to want what we want him to want. He is a neat little guy and I really enjoy him. He is a real tough guy and has a lot of personality.
I will keep this story updated as things advance. Written in Dec.1997 by Shelley Mackie