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Posts Tagged ‘Tourette Syndrome’

Yes…our home is musical tonight.  I’m honest.

We had baked beans and hot dogs tonight.  Younger son helped Hubby grill the hot dogs on the barbeque.  (Older son had helped Hubby last week.)  Hubby made his famous baked beans too.  He used the recipe from one of older son’s cookbooks.  The beans were delicious.  And created so much humor and laughter in our home.

Younger son loves to say the word “fart” over and over again.  Still we cuddled, read a wonderful story, giggled, and tickled.  As I was tickling him, he said in the cutest voice, “I’m going to pee my pants!”  It was too cute!  We talked about how he has been managing in school.  He told me that one of the kids told him to stop moving his head.  Younger son calmly explained to the boy that he can’t help moving his head.  Younger son told me he felt fine about it.  He’s taking ownership and finding his way with the tics.  He feels smarter lately.  He feels like he has super powers.

Older son and I had a long talk about how school is going.  He said classes are fine, but socially….  He is working so hard to not talk as much and he is making huge improvements-at home and at school.  But the other kids are used to him talking too much and he’s stuck with that role in their minds.  His awesome teacher is trying to help break that pattern and he’s going to talk with her tomorrow about the one student who keeps telling him to shut up even though he’s not talking.  He also worries about being cool.  I reminded him that he decides if he’s cool or not.  If he believes he is cool, others will see that and want to hang with him, to be his friend.  I struggled with that for years-I’m hoping, with the way I told him, he’ll understand it sooner.  I explained to older son that while it’s dorky for his mom or dad to give him this pep talk, There Can Be Only One would tell him the same thing (except he would say it in an even cooler way).  I reminded him that There Can Be Only One thinks both older and younger son are cool and a great, huge smile spread across his face.

Family comes in all forms.  Families can be formed through many ways.  Even when a member of the family isn’t in the house, the presence can still be felt.  And all these conversations tonight came together because of the musical baked beans.

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Younger son has passed the one year mark for the tics.  We’ve been using orthomolecular therapy for the Tourette Syndrome and it seems to be having a very positive effect.  There are still facial tics and, as I found out at parent-teacher conferences this evening, the arm tics are still present.   Still the tics have been reduced greatly.  He feels a lot better and his arms don’t hurt as much because of the reduction in quantity and severity of the tics, so yea!

Younger son had his first session with the cognitive behavioral psychologist today.  He really connected with the doctor.  The session went very well and the doctor helped him with deep breathing exercises and encouraged him to keep using his pockets trick.  He has to go once a week for the next three weeks.  There will be much to coordinate at work tomorrow with my calendar!

Younger son really expressed himself so beautifully during the session.  It seems he has a lot of ideas and feelings about his older brother.  Things Hubby and I have not been privy to, but with that neutral third party, he feels comfortable opening the conversation.  I am impressed with how eloquently younger son expresses himself.  He is so wonderfully thoughtful and chooses his words with such care.  I am in awe of him.  He embraces each new doctor and office with an open mind.  He tries it and then we talk about it after to see how he really felt about it.  He doesn’t hold back-in his like or dislike.  And a tradition began after the appointment.  He chose Swedish Fish from the vending machine.  He asked if he gets those after each appointment.  Perhaps that’s why he wants to go again.  Oh, he is my beautiful boy.   246

Close your eyes
Have no fear
The monster’s gone
He’s on the run and your daddy’s here

Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy

Before you go to sleep
Say a little prayer
Every day in every way
It’s getting better and better

Out on the ocean sailing away
I can hardly wait
To see you come of age
But I guess we’ll both just have to be patient
‘Cause it’s a long way to go
A hard row to hoe
Yes it’s a long way to go
But in the meantime

Before you cross the street
Take my hand
Life is what happens to you
While you’re busy making other plans

Before you go to sleep
Say a little prayer
Every day in every way
It’s getting better and better

Beautiful, beautiful, beautiful
Beautiful boy
Darling, darling, darling
Darling H

-John Lennon

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In one of the many classrooms that I’ve taught in over the past 20 years, I had an amazing student in my class.  He was confident, self-assured, and friendly.  All of the other students liked him.  He was very smart, had a great sense of humor, and made others feel at ease.  On the first day of school, he asked if he could have a few moments to speak with the other students.  Those moments made all the difference in the world for my class.

He introduced himself and then told them that he had a condition called Tourette’s Syndrome.  He said that it caused different uncontrollable movements in his body and uncontrollable small noises.  As he was speaking, the students could see what he was referring to and even hear an occasional noise interjected in the words.  He then asked if anyone had any questions.  There were a few moments of awkward silence.  Mostly, I think, because the students weren’t expecting such a frank and honest discussion.  Then a student asked a question.  He answered.  Then another question and another answer.  Soon the students were satisfied and we began the lesson.  It was never an issue in the class.

At times, he had to practically sit on his arm in order to write.  The students asked about that the first time they saw it happen.  He explained that it had taken some time, but he had finally discovered that this made it easier to write when the movements were particularly strong.  He assured them that it didn’t hurt and that brought them comfort.

He was so amazing at making others comfortable with Tourette’s.  The comfort came from his efficient way of educating people.  He wasn’t overly dramatic.  Nor was it peppered with pity.  He didn’t see it as a problem.  I was in awe of his confidence.  I was in awe of his parents for raising and nurturing such a wonderful young man.  They had helped him develop such a wonderful sense of self and an amazing passion for life.  They didn’t focus on a “disability” –they focused on their son.

I was in awe of him 15 years ago when he was my student.  Then it was because I impressed with his confidence, intelligence, and ability to accept and move on from the Tourette’s.  He didn’t let it become his life, it was simply a part of him.  While this is the same approach I took for myself with the schizophrenia, he was my model for how to handle a situation when it is happening to your own child.  It’s one thing to choose to handle something for yourself in a certain way, but  it’s totally different to help your young child choose the path.  Those moments he took on the first day of school were part of that approach to life.

15 years later those moments from the beginning of class on the first day of school are again making all the difference.  As I watch younger son’s shoulders, arms, chest, and head move uncontrollably, I do have some tears streaking down my face because I know it will be a more challenging road for him, but I also know that he will be all the stronger for it.  He will continue to be the smart, confident, funny, inquisitive, mischievous, adorable young man he already is.  His classmates will get used to it and eventually not even hear his little noises or notice his movements.  They’ll only know the amazing young man I know.

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English: Author - John Henkel, from the Food a...

Having lived with schizophrenia for this long, one gets used to a heightened level of paranoia as a norm.  I am still haunted by the one psychiatrist who said I shouldn’t have children.  But I do have two wonderful sons and I try to be the best mother I can be.  Still, I watch my sons closely for any early warning signs, reminding myself they are still not of the traditional age of onset.  Younger son, as I have written, will be evaluated for Tourette’s syndrome and I wouldn’t be surprised if it comes back as a “yes” as both involve misfirings of neurochemicals in similar areas of the brain.

 

But last night older son was talking under his breath.  When I asked him if he was talking to himself he said he was talking to the angel and the devil that sit on his shoulders.  My heart skipped a beat.  Then I asked if he was making them talk or if they talked on their own.  He assured me that he makes them talk.  I asked how many there were.  He answered eight.  The second time my heart skipped a beat.  He then explained a very detailed hierarchy about these self-consciences.  The angel has a set, the devil has a set, and so on.  I felt fine by the end of our conversation and the paranoia relaxed back to the regular level.

 

We have not yet told them about what Mommy has because they are young and do not need to know yet.  We’ll tell them when the time comes because I do not want to perpetuate the practice of not talking about important things that exists in the families.  That creates more messes than it’s worth.  They will know what is in their pasts and what to be aware of for their well-beings over their lifetimes.

 

Eight voices.  I had eight voices.  The first two were God and the devil.  At first they were comforting.  But as the six others joined them over the years, and as what they were saying became more violent, they were less and less comforting.  I do not miss them, most of the time.  Sometimes though, when the decision is really difficult, I wonder how it would be if they were here making the decision for me.  It would take the burden off my shoulders.  But accountability is a part of life.  Making good choices.  Even without a little angel and devil on your shoulders.

 

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I let myself enjoy the weekend.  I let myself bask in that river in Egypt.  Da Nile.  I didn’t look at work email all weekend (which was a nice change– I have got to remember that I control if I check it or not).  In not checking, I didn’t think about work and I didn’t see the email from younger son’s teacher.  But I’ll get to that in a moment.

I knew I was wrong about the possibility of canceling the January appointment for younger son from the moment I wrote it.  As we sat eating a late lunch at Great Adventure I got my visual proof.  As he ate his food, younger son’s head was moving and he didn’t miss a beat.  His lip tic was happening too.  Hubby and I looked at each other at one point and just gave each other that look.  You know the look.  The look between a husband and wife that says everything it needs to without any words.

That was Saturday.  Involuntary movements were all of the map on Sunday too.

Then this morning at work I read the email from his teacher.  She had written to let me know he was holding his own in class, keeping up with the other students.  She also wrote to let me know she had noticed several head movements and noticed the sounds, the noises.  Small, quiet grunts that younger son seems to not notice at all.

January 3, 2013 is a long time from now.  I can’t not do something to try to help him (if you’ll forgive the double negative).  Hubby wants to look in diet and nutritional options.  What I wonder is if we try to help, will it make it difficult to diagnose something like Tourette syndrome?  I am going to call the doctor’s office tomorrow and let them know that we can’t sit and watch without actively trying to help him.  Perhaps if we keep a record of what we observe and what we try so they have a running record.

In college, we would say DENIAL all the time.  How it wasn’t just a river in Egypt.  We also said “Your MOM” a lot.  Don’t completely remember the origin of the mom reference.  It’s strange to be over 20 years out from college and be the MOM in denial.

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