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Tourette's?

post #1 of 5
Thread Starter 

My son may have mild tourette's. He is being evaluated for ADD type behaviour... and does have tics... motor, simple, complex, and vocal....

 

I wanted to reach out to other families who have gone through this evaluation process and have children with tourette's...

 

my son in 9 and doing pretty well in school. He is very bright... but does have some issues with finishing work. His writing is terrible... but can write well (if you can read it!). He loves to read, and loves science, math and building things with electronics (and taking things apart).

 

I would like to help him, because I know the ADD like behaviour is a struggle for him and his teachers.He also has anxiety--separation anxiety, mainly.

 

I would love to connect with others! Please share about your journey and child. :-)

post #2 of 5

My DS is 7 and has ADHD, mixed type - Innattentiveness and Impulsivity.

 

We definitely have the problems with finishing work and handwriting.  We had that written into his IEP, teachers can modify or shorten an assignment.  This is especially useful when taking long tests, since they can omit certain parts (i.e. if it a skill he has already demonstrated he has full comprehension of in class, the teacher can allow him to answer only one of the 4 questions on the test that cover that topic, or if the assignment is to define and give 5 examples, she can have DS only give 3 examples.

 

We found that on assignments where he has to write things out, he sometimes has a problem completing the assignment, so we also can have him use the computer.  He can also have testing in private if the classroom is to distracting.

post #3 of 5

My 6th grade daughter (age 11) has both ADHD and Tourettes (along with MDD, OCD, and anxiety). She was diagnosed about a year ago. This has been a huge, painful struggle for us. She has been very difficult all her life, and after working with her via every parenting technique I'd been able to find, I was fed up. It never occurred to me that she had special issues. I thought that she was being oppositional and defiant (since by nature she is strong willed - as am I!).

 

For us, the depression has been the most difficult. But right around 4th grade, the ADHD really became a problem with the increased need for school concentration. She is otherwise super successful in school. But this year she started middle school, and it has gotten worse again. The changing of classes, different teachers, writing down and packing up assignments by herself, and staying focused on far more homework and assignments/projects that are due at various points in the future, is really difficult for her (and as a result, I'm going crazy). The Tourettes is difficult but manageable, especially after coming to understand it (tsa-usa.org) has a lot of info. 

 

If your son ends up diagnosed with Tourettes, I highly recommend getting involved with a regional group. This will enable you to learn a lot about TS, share with other parents who understand, and allow your child to be around other kids with tics which can really help to make them feel normal. There looks to be an OR/WA Tourettes group, but I can't get the page to open. They could direct you to more local support groups.

 

I highly recommend getting actual diagnoses before you start worrying too much. But if you can manage these concerns without pursuing a dx, that's ideal. My daughter was profoundly miserable, so we really were forced to figure out the root of these things - several years of therapy had not worked. She is now on medication. It's something I never wanted to do - and don't recommend - unless your child's life is degraded without it. In the end (for us - certainly not for everyone!), the risk of having a suicidal child was far greater than any adverse effects of medication. We also have started an incredible new therapy process for the depression, that I really feel will make a big difference.

 

That's a little bit of my story... but believe me it took a long time to get even this far!

Good luck Mama.

post #4 of 5
Thread Starter 
Quote:
Originally Posted by anj_rn View Post
 

My DS is 7 and has ADHD, mixed type - Innattentiveness and Impulsivity.

 

We definitely have the problems with finishing work and handwriting.  We had that written into his IEP, teachers can modify or shorten an assignment.  This is especially useful when taking long tests, since they can omit certain parts (i.e. if it a skill he has already demonstrated he has full comprehension of in class, the teacher can allow him to answer only one of the 4 questions on the test that cover that topic, or if the assignment is to define and give 5 examples, she can have DS only give 3 examples.

 

We found that on assignments where he has to write things out, he sometimes has a problem completing the assignment, so we also can have him use the computer.  He can also have testing in private if the classroom is to distracting.


Hello Anj_m! Thank you for your post! I will probably be asking you what kind of IEP supports you have for the inattentiveness... right now DS is in the Montessori school, where he needs to make a lot of choices... in some ways it is good, but I feel like his anxiety would be much lower in a traditional classroom... he has trouble writing, too!

post #5 of 5
Thread Starter 
Quote:
Originally Posted by andromedajulie View Post
 

My 6th grade daughter (age 11) has both ADHD and Tourettes (along with MDD, OCD, and anxiety). She was diagnosed about a year ago. This has been a huge, painful struggle for us. She has been very difficult all her life, and after working with her via every parenting technique I'd been able to find, I was fed up. It never occurred to me that she had special issues. I thought that she was being oppositional and defiant (since by nature she is strong willed - as am I!).

 

For us, the depression has been the most difficult. But right around 4th grade, the ADHD really became a problem with the increased need for school concentration. She is otherwise super successful in school. But this year she started middle school, and it has gotten worse again. The changing of classes, different teachers, writing down and packing up assignments by herself, and staying focused on far more homework and assignments/projects that are due at various points in the future, is really difficult for her (and as a result, I'm going crazy). The Tourettes is difficult but manageable, especially after coming to understand it (tsa-usa.org) has a lot of info. 

 

If your son ends up diagnosed with Tourettes, I highly recommend getting involved with a regional group. This will enable you to learn a lot about TS, share with other parents who understand, and allow your child to be around other kids with tics which can really help to make them feel normal. There looks to be an OR/WA Tourettes group, but I can't get the page to open. They could direct you to more local support groups.

 

I highly recommend getting actual diagnoses before you start worrying too much. But if you can manage these concerns without pursuing a dx, that's ideal. My daughter was profoundly miserable, so we really were forced to figure out the root of these things - several years of therapy had not worked. She is now on medication. It's something I never wanted to do - and don't recommend - unless your child's life is degraded without it. In the end (for us - certainly not for everyone!), the risk of having a suicidal child was far greater than any adverse effects of medication. We also have started an incredible new therapy process for the depression, that I really feel will make a big difference.

 

That's a little bit of my story... but believe me it took a long time to get even this far!

Good luck Mama.

thank you for your reply, andromedajulie!

 

my sons ticks are pretty low key right now (he is 9) but really ramped up last year, and do wax and wane. When he is less ADHD (how else do I say it?) he tics way more. Like when he is really into something, he tics. His tics are mild-- like blinking, humming, and the one complex one is finger smelling (and the way he does it is very dramatic. LOL). Honestly, I agree the anxiety and moodiness is the hardest thing to handle, as a parent. Having a suicidal child is very scary, and that is what those meds are for. I would love to hear more about the therapy you are doing , if you'd like to share. Each year my child has gotten more complex, and so I feel like I really need to get him help right now. HAving so many appointments can be hard.... but I know my kid needs this right now. I don't worry about the Rx so much, but do want strategies that help!

 

I hope you continue to have good treatment for your girl! Middle school can be so hard... it is like we just have to hold on and get them through it... and then through high school!

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