I make wood ornaments and a friend asked my why I don’t make an ornament for Tourette Syndrome. Well, here it is:
The holidays are over.
Time to get back to a routine again. My kids are FERAL. I mean, it’s bad. And who can really blame them? We’ve given them a steady diet of sugar, no sleep, gifts, music, song, lights and social events. It’s time to open up a big beefy can of Reality Check and start over.
This leads me to my top 10 goals for 2013. (Yes, I have 10. Because I do best when I am busy. A-Personality Type? Helllooooo!) Continue reading
The Christmas season begins far to early in retail, but us ordinary folk keep doing what we normally do day in and day out. Sometimes thrown in to the mix is a trip to the hospital.
My 14-year-old has lived with his tics since he was about 5. It started with him poking chips into his neck before he ate them, then came facial tics and then verbal tics. I wasn’t upset by it but thought maybe it was a problem which occurred because he had had cancer the year before and had gone through months of chemotherapy.
I was assured by his oncologist that this was not the case and that she would refer him to a neurologist. She did, and we met this lovely doctor. This doctor told us that he probably had Tourette, but she didn’t want to give a firm diagnosis yet.
We saw her for a few years on and off, with the same probable diagnosis. She discharged him but said if at any time we needed to see her again in the future we must get straight in touch. Roll on 5 years. My son’s tics are mild, mostly, but still frustrating for him to the point he will hit himself (this worries me) to try and make them go away.
He has never had a day without them. He used to call them Tough Shit (TS); now he calls them nothing. He will be starting to prepare for his exams in just over 2 years soon.This means exams in big rooms full of people he would rather not be around. Hence, we are seeing his doctor again.
She has now confirmed that he has Tourette Syndrome, and suddenly instead of a little help from school and others, the label has opened up a whole deal of help. He is exactly the same person (no second head, third eye or a tail) doing the same things.
But I am thankful that an already supportive school can now do their job properly. He can now have a laptop in class because boy is his handwriting totally illegible. He will also, more importantly, do his exams in a private room — this was his main concern.
So taking time out from the normal has proved useful, but like his teacher said, just because it now has a confirmed label does not mean you have to be that label.
It’s four days before Christmas. My mom broke her hip, so we’re not doing the holidays at her house this year. Instead, we’ll have our normal Christmas Eve tradition here, as well as a few merry surprises for the kids, which I’ll share later.
Stink’s tics remain reasonable. They were up a bit the other day. Apparently, macaroni and cheese along with fried breaded chicken sticks aren’t a good combo for our gluten free/dairy free wonder child. But it’s the holidays. I’m over thinking there is a cure out there for TS. I’m going for the bucket theory: Joy, balance and discipline. Shake it all up and do your best.
On a doctor’s note, the good doc at UCLA of months past continued to irritate me last week as I went for a prescription of Intuniv and found he did not fill it. He had never returned my phone calls or e-mails either. This is an all-too-familiar pattern from last year, when he wouldn’t return my calls for an initial appointment, then once we had an appointment (enter me kicking and screaming) he did not follow up a month later as promised.
Three months later, plus a ridiculous dog and pony show for some trial for Asperger’s — which we still don’t know if Stink has or has not — and we have no official diagnosis. What do we have? Some Intuniv that I could have received through a regular physician.
The takeaway from this? You need to be a pitbull with your kid’s medical care. There is no easy 1-2-3, so don’t waste time being frustrated over lack of follow-through from doctors. YOU be the follow through. This is no time to throw a hissy fit.
Another takeaway? Most labels are crap. I don’t know if my kid is an Aspie. If he is, he’s super high-functioning with great grades and friends. What I do know is that he is hilarious, smart, creative and has the soul of a preacher/conman. He’s OK in my book.
Treat the condition, but don’t neglect the spirit of the child. The second will take him much farther in life.
How are you all doing? What are your Christmas plans?
Read my more at my Happily Ticked Off blog.
NOTE: The following was posted by Dr. Leslie E. Packer on the TSPlus Blog on December 15 and is being republished her with kind permission.
Last week’s tragic events in Newtown, Connecticut, are all over the news. At times like this, parents often ask how they can help their children cope and how to talk to them about something that we can’t fully wrap our own heads around. So here are some tips on how to talk with your child:
1. Start the conversation. If you don’t start the conversation, their first source of information may frighten them more. Start by asking them if they have heard anything about what happened at an elementary school on Friday.
Avoid asking, “Have you heard about the tragic shooting at a school?” or anything that would start out by elevating the level of emotion. If they say they’ve heard something, ask them what they’ve heard and then begin to calmly tell them the facts.
You do not want to tell them everything at this point – providing too many details can flood the child and make them fearful. Try to keep your emotions in check so as not to overwhelm your child. For some of us, this will be the hardest part as we have been crying ourselves and find this incomprehensible or overwhelming.
At this point, you need to be focusing on your child and not your own feelings. Turn the TV off when your children are around because if they see you responding to this with intense emotion and absorption, they will, too. Continue reading
Jacob has been doing really well, but he says that our presentation to his class didn’t do much to make the kids talk to him. He’s got a polyp on his left vocal cord, which makes his voice a little muffled and hoarse. The kids keep asking him, “Why do you talk like that?” and it bothers him tremendously, but he’s slowly learning that the views of a few aren’t the majority. Now just to keep him to the point where other people’s views don’t affect the way he sees himself.
I’m going to try to start posting on the blog either today or some time over the weekend. We’re leaving to visit family tomorrow, but I’m packing my laptop. I have a lot to say and even more to hear and learn.
Read more from me on Facebook at Embracing Difference.
The following excerpt was posted on the A Little Bit Different: Tourette Syndrome Facebook page, which is run by RuthieP — a blogger for Teens4TS. The excerpt is from a mother named Brandy, who has a question about her daughter and sensory processing issues. Can anyone help her out?
Can anyone on this page tell me more about Sensory Processing Disorder? We know Ansley does have some sensory issues. She has never been diagnosed with SPD, and I am not sure if I should get a diagnosis. Why might I need a diagnosis if I believe she has this? Are there pros or cons medically for a diagnosis? What type of doctor would she need to see in order to get the diagnosis?
On another note, she has the regular thoughts or feelings of things not feeling good as far as clothing goes. Coats that are heavy are not comfortable, 3/4 sleeves are NOT comfortable, bows in the hair are not allowed, and jeans have to feel just right in the waist, etc…
However, I have since learned that when she gets a small scrape, she acts like it is a horrible cut, and that could quite possibly be a sensory issue as well. Also, she gets very, very hot in the car but it is ONLY in the car and is almost always while I am driving (and rarely when my husband drives….HMMM). She also gets nauseated and vomits in the car at times but does not get nauseated on merry-go-rounds, ferris wheels, roller coasters, swings, etc… I read this could also be a sensory issue.
I wanted to hear others’ take on these things and opinions, as well as what other sensory issues your viewers may have. The reason I am curious is because for so long I thought my daughter was overly dramatic (I know, bad mom award for that), but I am learning it may be sensory processing disorder.
Can anyone tell me how I would know the difference between SPD and car sickness, etc?? Any advice or insight is greatly appreciated!! I should say I feel like every day I am learning something new!
The NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) is deeply saddened by the senseless acts that took place Friday at Sandy Hook Elementary School in Newtown, Conn., and has issued the following statement from Executive Director Faith W. Rice to help families and friends in our community who are affected by this or other tragedies:
The NJ Center stands united with every American who is grieving the loss of 20 schoolchildren, 6 educators and 1 other adult following the violent acts carried out on the morning of Friday, December 14, 2012, at Sandy Hook Elementary School in Newtown, Conn. Human beings – especially children – are the world’s most precious resource, and there are none to spare. With that in mind, the NJ Center extends its deepest condolences and sympathies to every family member, friend and person affected by this tragedy.
The ripple effects of this tragedy are many and will be felt for countless days, weeks, months and years into the future. Coming to the aid of those affected is vital in this most sensitive of times, and it is our duty – that of the NJ Center and everyone associated with care of children – to help those who need support. Parents, educators and medical professionals must join hands with the rest of society to ensure that all children receive the attention and care they need and deserve. Continue reading
In my first two posts, I talked about what my life was like early on and the various phases of treatment I had to go through leading up to present day. Now, I’ll talk about how Tourette Syndrome can hinder one’s quality of life, especially when it comes to work,
Tourette Syndrome is not life threatening, but it can be living threatening — and what I mean by this is that it can seriously hinder you from living to your full potential.
Probably the most difficult time for a person with Tourette Syndrome is the period of transition from school to the workforce and life, because Tourette Syndrome really hinders you during these periods of significant transition. For people with Tourette Syndrome this period is commonly referred to as a “transition cliff.”
I know this as a fact because right from the time I graduated university to the time I was diagnosed and started treatment for Tourette Syndrome some 15 years later, I was in a void of not being able to function properly — a period where I had various jobs, many of which were part-time, so my career development suffered immensely.
Many aspects of Tourette Syndrome including the mental anguish of emotions that we go through on a daily basis are very difficult for someone who doesn’t have the disorder to understand, which is why properly educating people about the disorder is very important. Continue reading
In my post yesterday, I talked about what having Tourette Syndrome was like in my early life. Now, I’ll talk about how it started to be treated leading up to present day.
My initial treatment was as follows: I was on Pimozide for a few months, and it turned me into a virtual zombie. Then I was put on Sulpiride for about 4 years, and it was better, but it took a good part of the life out of me. Then I was put on Olanzapine for 5 years, which was better again, but it still took a good part of the life out of me.
In May 2010, my new neurologist put me on Tetrabenazine because at that point in time I had been taking neuroleptics for a little more than 10 years and with continued use I would be at an increased risk of developing Tardive Dyskinesia, a very unpleasant, debilitating and irreversible condition.
Tetrabenazine was the best med up to that point with regards to its side-effect profile, which was more tolerable; however, it wasn’t really effective with regards to my motor tics and jitteriness. Continue reading