a. How does it feel to be the parent of your child?
Parenting Penelope, who is living with Tourette's Syndrome is often times a challenge, but certainly a joy. The key to parenting a child with TS is to understand that this disability is impossible to control. Most fits and outbursts other parents experience with children are often behavioral issues and carry the same level of frustration and embarrassment. With TS however, it is important to understand that your child has no more control over an outburst than you do. It is important to not stress out or draw attention to the outburst or tic because often times it stresses Penelope out more so, and the outburst will become progressively worse, since these tics are associated with stress and tension. It is important to create a calm, stress-free environment for Penelope which is often times hard when you and your family is stressed out. It is also almost impossible to control the outside environment and school, which once again, you as a parent must realize is out of your control and just do your best to keep your child with TS calm and ignore the outburst or tics as much as possible to shorten them and make them less embarrassing for your child. Luckily though, Penelope's TS has not carried into other areas like OCD and ADHD, and while she tends to lose focus in school during tics, we have been lucky enough to have an understanding teacher who does not draw attention to tics and helps the other students in her classroom cope and understand Penelope.
b. How is your child developmentally the same or different from other children at the various ages?
Penelope acts like any other 6 year old when she is not suffering from an tic outburst. However, as she is getting older she is a little more shy around people that she has not known very long and are unaware of her disability. Often times this creates a stressful environment and some of her tics are exposed which often times include repeating words or spasms of the face. These things are often times not hurtful to anyone else, but can create an uncomfortable feeling around classmates so sometimes it is obvious that Penelope is withdrawn when she feels the effects of an episode. Other than that, academically, Penelope functions well when she is working independently and when she is not under pressure like a timed test or under a time limit.
c. What professionals/agencies do you deal with? What services are available to you and your child?
I deal with the TSA (Tourette Syndrome Association) that provides plenty of support and resources. I am a member and donate yearly. It has a support group, chapters in various cities, seminars for various aspects of life regarding your child (bullying, behavior consequences, education, sports and other social situations etc.). It has informational material available to order for current TS, newly diagnosed, teens, children and adults. What I really find useful and use personally is their list for ensuring your child with TS is getting their educational needs met. The list has what to do regarding introductions, meetings, IEP, 504's, guidance counselors, etc. I have personally printed this checklist every school year and made sure that I did these meetings and set up these resources for Penelope at her school to make sure that her school year will be a smooth year.
d. How did you find out about the above services?
http://www.tsa-usa.org/index.html Has a list of all the resources and materials they offer and special blogs, contact lists, research, medical helps, advice and benefits. They list resources in each category and you can even sign up for a newsletter that will give you breaking news on the disability and ways to make your life and your child with TS' life easier.
e. What financial burden, if any, are you experiencing?
Penelope is an easy going child, so she really does not require any professional psychiatric help or medication. I do however pay for a tutor occasionally who will go over lessons and concepts with Penelope that she is not grasping because of several reasons- if she is feeling withdrawn, stressed, sick, or anxious. Often times I have the tutor administer unit or chapter tests with her teacher's permission since Penelope functions better independently studying. As she grows up more, I feel she might be utilizing a tutor more, although TS is supposed to subside over the years, I feel Penelope's shyness could start to interrupt her academics, so more tutoring will be necessary in the future.
f. What other information do you want to share?
It is very important to know that TS is not something you can control. As a parent, you need to focus on the positives of your child- recognize and call out the good and the areas in which he or she excels to build the confidence that is often lost when a child has a disability. It is also important to keep that safe environment where your child does not feel ashamed or stressed when expectations cannot be met because they suffer from something that is out of their control. It is also important that you utilize all the resources available to you and your child to help alleviate the stress and embarrassment that results from this disability. Try your hardest to not categorize your child as someone who needs special treatment because these tics come and go quite quickly sometimes, and as your child gets older it might get easier and it might even subside so it is important to show them that they can assimilate and function normally in society and that they are just like everyone else for the most part. Stay positive!
http://stephanieallan.edu.glogster.com/tourettes-syndrome-4021/
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