Frustrated Mom Starts First Tourette Support Group in Maine
Parents in Lewiston,Maine, are at wits end looking for support for their 12-year-old daughter with Tourette syndrome. They are looking for others like them...
April and Bobby's 12-year-old is smart, in advanced classes and played the violin. She had suffered from anxiety and was what you would classify as a worry wart. But soon, she started to develop tics.
Remote learning was not helpful, and now she has complex tics and coprolalia, which is the swearing tic. This developed quite quickly.
She claps her hands, will hoot like an owl and even hit herself against walls. 1 out of every 100 children has some sort of tic disorder or Tourette. They don't know what causes this to happen. It can show signs as early as 4-5 and all the way up to 18. Boys develop this more than girls and there is most likely an association with OCD, anxiety and ADHD.
There is no cure, but there are ways to ease the symptoms.
With such a prevalent disorder, you would think there would be support in Maine - but you would be wrong. So April has started a group, so that her daughter can learn of others with this disorder and more can be done to ease the tics.
It's frustrating enough to have something new affect your child, but when you turn for help and there is none - that is where mama bears are at their best. This is what April recently wrote about her daughter Nessa:
There are many frustrations and struggles to everyday life for Nessa. She struggles to have a normal sleep schedule, focus on schoolwork. She can no longer play the violin. Nessa struggles to drink a glass of water as her tics make it dump it on her head whenever she tries. There is no control what she says, and she feels bad for saying most of the stuff that comes out of her mouth. The other day Nessa said “I don’t want to tic today, I am exhausted and feeling lazy” but the tics do not rest for the weary. Nessa is feeling like she is the only kid out there with this disorder.
Nessa is also hoping to go to a camp with others who struggle with Tourette syndrome. It's in Georgia for one week. She is so excited at the possibility of seeing others like her - and just being. Not having to hide or struggle to control her tics. If you can help in anyway sending Nessa to camp, that would be so appreciated.
If you, or anyone you know, is dealing with Tourette syndrome, please join the above group. The more people get together, the less frightening this may be...