Looking for more support for my 12-year-old son

I have a son with Tourette Syndrome and Obsessive Compulsive Disorder. I want to share what I have learned over the years and perhaps learn something new from other parents. My son was diagnosed around age 7, and he will be turning 12 soon.

We have learned a lot over the years and have had the good fortune of finding wonderful doctors and therapists. I am tremendously grateful to them for the strides my son has made over the years.

Like those with TS know very well, there is a constant waxing and waning of symptoms. My son started middle school in September, and to my surprise the transition went better than I expected. My son is a very hard worker with a lot of determination and that certainly has a lot to do with it.

Over the years, I have been very disappointed with the lack of support groups for children with TS & OCD. Although there are many options for the parents, I have yet to find something where kids could meet twice per month to talk about what it is like living with Tourette.

I feel this is so important and so desperately needed. There is nothing like being able to talk to someone who truly understands what you feel and what you go through on a daily basis. My son is social and does have some very nice friends who seem to accept him for who he is, but I would love to meet another family with a 12-year-old boy in the State of New Jersey.

I think it would help my son feel that he is not alone and hopefully will help another child, too! We will be at NJ Walks For TS at Ramapo College on April 14. I am hoping we meet some people and maybe can exchange e-mails.

Supportive sisters

IMG_2277We have two wonderful daughters, both of whom have Tourette Syndrome (ages 13 and 9). After several years of homeschooling both, our younger daughter, Paige, decided that she wanted to go to the local public school.

Besides all the thoughts around the expected (and unexpected) changes that this would bring in the home and within the family, I was particularly concerned with how her new classmates and teachers would react to her TS.

I feared that my self-assured, headstrong, confident daughter would be transformed into a cautious, self-critical and depressed pre-teen if her experience proved to be negative and stressful.

Luckily, our older daughter, Tess, stepped in to help her little sister. She used her prior experience to organize and deliver an in-service presentation to Paige’s future classmates and teachers. To paraphrase her opening remarks: Continue reading

A personal account of living with Tourette Syndrome & associated disorders, part 3: Quality of life

In my first two posts, I talked about what my life was like early on and the various phases of treatment I had to go through leading up to present day. Now, I’ll talk about how Tourette Syndrome can hinder one’s quality of life, especially when it comes to work,

Tourette Syndrome is not life threatening, but it can be living threatening — and what I mean by this is that it can seriously hinder you from living to your full potential.

Probably the most difficult time for a person with Tourette Syndrome is the period of transition from school to the workforce and life, because Tourette Syndrome really hinders you during these periods of significant transition. For people with Tourette Syndrome this period is commonly referred to as a “transition cliff.”

I know this as a fact because right from the time I graduated university to the time I was diagnosed and started treatment for Tourette Syndrome some 15 years later, I was in a void of not being able to function properly — a period where I had various jobs, many of which were part-time, so my career development suffered immensely.

Many aspects of Tourette Syndrome including the mental anguish of emotions that we go through on a daily basis are very difficult for someone who doesn’t have the disorder to understand, which is why properly educating people about the disorder is very important. Continue reading

Everyday tasks are insurmountable obstacles

Why is everything a fight with her?

This was our daily, sometimes hourly, lament with Bean. She would fight having her teeth brushed, fight getting her face washed, fight getting in the car seat, fight getting strapped into the stroller. Fight getting dressed; fight getting undressed, fight leaving home; fight returning home. Everything. Always. It seemed that nothing was ever easy with her.

When I witnessed other kids happily going through their daily routine of getting ready and out the door, my jaw would drop to the floor. And these parents, they didn’t have to use the constant creative tactics I did. They just went about their business.

No constant singing of songs to make the tasks fun and inviting. No imaginative turning-their-child’s-mouth-into-a-dollhouse-and-cleaning-all-the-furniture-inside tooth brushing games. No turning on Dora just so they would be distracted enough that mom could quickly slip on their clothes without them even noticing. No funny noises, funny faces, crazy dances, promises of rewards. Nothing. Despite all my research, I could not figure out why Bean had such a hard time with these simple, everyday tasks. Continue reading