Friday, May 13, 2005

Have Faith in Yourself!

I'd hate to count the hours I've spent researching TS since Z was diagnosed 4 yrs ago! We originally thought that he had OCD(Obsessive Compulsive Disorder) because of all his repetitive behaviors. The ONLY thing I knew about TS was that it was the "disease" that caused people to swear uncontrollably.

After 15 minutes online, I discovered just how ignorant I was! By the end of the evening, I was pretty well versed in the hows and whys of TS. The next 4 years I read EVERYTHING I could find on TS, OCD, ADD, and Executive Dysfunction. Our local library had very little information so I did most of my fact finding online. I stayed away from personal sites and devoted myself to discovering the "true facts". What encourages me today, is how much research has increased in the last 4 yrs.

After we started homeschooling, I realized that we needed alternative learning styles for Z. I then started visiting personal TS sites. I highly recommend this to anyone dealing with a TS kid. It is a great morale booster to find out that you're not alone. There are people out there going through the exact same problems that you are.

I also started visiting TS message boards. This route didn't pan out too well. There really aren't any TS message boards that are current. Most of them hadn't been touched since 2001! I read the past messages anyway and I still learned a lot. The most important thing I learned was that I was probably the most knowledgeable person in my son's circle of contacts. This included family doctors, psychologists, psychiatrists, neurologists, teachers, and Special Ed departments. This was a revelation! Scores of parents on these message boards encouraged other parents to seek help ONLY from QUALIFIED TS neurologists, psychologists, and psychiatrists. It had never entered my mind to ask these doctors if they had actually treated TS before.

I did find one message board that is current: SchwabLearning.org. There are very few TS parents there, but there's all sorts of help with dyslexia, Asperger's Syndrome, ADD, and OCD. These parents have also become experts at dealing with all the meetings and paperwork involved with Special Ed. Please go there if your child has a neurological disorder. These parents can be more help than all the so-called specialists you've been seeing!

Bottom line. . . . Learn from my mistakes. Don't assume that every neurologist is well versed on your child's disorder. Trust in your own knowledge. . . . If it seems that YOU are the only one that understands your child's problems; you probably are! Trust your instincts and. . . . HAVE FAITH IN YOURSELF!

7 Comments:

At 5/13/2005 10:38 PM, Blogger -E said...

What a good parent to learn the facts for yourself! I'm impressed.

Michele sent me.

 
At 5/14/2005 6:48 AM, Blogger Wandering Coyote said...

Yes, you often cannot count on the medical profession for treatment. Everyone must take responsibility for what they need, and if that means going from doctor to doctor until you find one that listens, then that's what you do. I made that mistake a few years ago - never again! And as you've discovered, the better informed YOU are, the better able you are to make a decision about what's right for you and your son. Too often people give up their power and go to the doctor saying "treat me, treat me." I have learned that instead, you must go to the doctor already knowing what's wrong and ask him/her to help you heal yourself. And if the doctor doesn't listen, then you find another one.

 
At 5/14/2005 8:50 AM, Blogger tshsmom said...

Sometimes we even discover the doctors can't help us. We have to do it ourselves. Scary, yet empowering!

 
At 5/14/2005 8:09 PM, Blogger SME said...

Totally true. I'm not getting any help with my sleep disorder from drs so far.

 
At 5/19/2005 8:11 AM, Anonymous Sagepaper said...

There is a usenet news group that might benefit you. It is alt.support.tourette There is some bickering you will find there, but there is also very good information and support. Leslie Packer and Jo Cohen are two professionals who help a lot. There's also a Dr. Roger Freeman, and my father, Sandy L., is also a physician.

 
At 5/19/2005 8:16 AM, Blogger TaiChimp said...

SME,

The new drug, Lunesta, has been a Godsend for me. It is approved for maintenance use, unlike other medications. It helps with both sleep onset insomnia, and the kind where you wake up and can't get back to sleep. It is longer acting than most drugs, so you actually get a night's sleep. Also, it sinks you into two different deep sleep states. That makes sure you are getting quality sleep, not just quantity. A good night's sleep can help if your problem is daytime sleepiness, too.

 
At 5/20/2005 12:34 PM, Blogger SME said...

Taichimp: Thanks, I'm going to make an appointment with my dr. soon anyway, and I'll ask him about this. I don't like to use sleeping pills on a regular basis, but I like to have them available for nights I desperately need them, and Lunesta covers the primary difficulties I have: Falling to sleep, AND staying asleep for a decent length of time. I was already planning to ask the Dr. about this medication, so thanks for your input!

 

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