CHARGE Syndrome Canada Newsletter fall 2008 No.17 © copywrite |
Puberty disorders link to CHD7
Past Edition of the Newsletter
Behaviour - Obsessions
I've seen many children have successful learning experiences when lessons are based upon things they may be obsessing about. I recall a young lady with Congenital Rubella Syndrome who loved jewlery and shoes. She could have stopped you for hours to study what you were wearing, and ask you a multitude of questions around those topics. I learned the student found math much more enjoyable when using pictures of shoes out of the catalogue to count, and putting those napkin rings from the wedding store around things. The study of math now had meaning and concepts began to take hold. I recall one student subtracting using chocolate chips, and to her delight she understood finally when they could "disappear"!
In the late 80's and early 90's we had never used the term "obsessive compulsive disorder" or OCD. Similarily, no one could really imagine a case of Tourettes AND another disability going along with it! And when it was finally admitted that the expression of Tourettes could take many forms, including spitting, it was a great relief to confirm that it wasn't anything the workers were or were not doing !
To have a child with such unique behaviours interact with other teens was challenging. We would go visit a community school at recess, to try and engage in any type of joint activity. Finally the only success came after we had lined students all up and had a "spit" contest. That formed the first real "joint activity", and suddenly for the first time interest in eachother took hold. Next came the squishy foam out of the can, and despite the yard duty teacher's aghast look, all the children were laughing and really interacting with the CHARGE child. Next we were able to introduce the biggest red ball they would ever see on the playground, and some relationships then formed from there.
What happens when the obsession becomes so intense that it interfes with learning, is when often medication is looked at as an option, along with some behaviour "trade-offs". The concrete calendar system works well, and helps the children know there needs to be a bit of "my thing" and then a bit of "your favourite thing" in order to put limits on the obsession and help them better able to function in daily life. But there are some obsessions that cause difficulty to curb. What if for example, the obsession is with water? Drinking from planters and from the toilet or anywhere has caused great concern. The child would delight to use water during activities in a more functional way and for the future, a job filling the water cooler or doing dishes could be delightful.
When the obsession is something not understood, it can make the team struggle in trying to explain to administrators. If the obsession involves dangerous or risky behaviour, it can still be controlled, but in set out conditions. For example, if they obsess about fire, having a check chart where they get to build a campfire at home at the end of a set of tasks completed could work. Or getting to sit in front of a decorative firelog at school in structured time periods when work was done could help the child set limits and try and control obsessions.
We were once consulted by phone in Alberta a few years back when a teen was obsessed about talking about sex. Community Living in Alberta now has workshops centered around basic concepts on what is appropriate and what language and behavoiur is not, and who discussions are appropriate with. Understanding the innocence of it all and realizing the behaviour base, can help avoid uncomfortable situations which are really quite simple!
When Jude Nicholas from the Netharlands brought to Canada specific CHARGE syndrome research which involved case study data, that backed up a specific case here in Canada, it helped to validify that some behaviour was not just about simply a lack of communication, or could be "fixed" with a simple behaviour plan. Strategy could be put in place that specifically would address these types of issues, such as dealing with compulsions and neurologically based issues.
~Ann Gloyn, Education Specialist Teacher
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