ADHD – Another Day Having Discussions

I used to read that the “co-morbid” conditions of T.S. were far more frustrating than the tics themselves.

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As defined, co-morbid means the annoying other conditions that make you want to poke your eyes out with ice picks the simultaneous presence of two chronic diseases or conditions in a patient. For kids with Tourettes, this could be ADHD, OCD, Autism, ADD and insane awesomeness.

Stink deals with the last two on the list, and let me tell you, it’s been a crazy year. If I was able to guide him through the chaos, drama and joy that accompanies kinder through sixth grade, let’s just say that seventh grade has proven to be the final leak in a boat that was destined to sink without a major overhaul in the floorboard.

Having a kid with T.S. and ADD, while being a working parent with a little bit of ADHD herself (I know… biiiig shock) is kind of like fixing a boat’s floor while still on the water. It can be done, but the progress is slow (Not to mention tiring. How many buckets of water can you scoop and throw over the side while steering the ship and feeding the crew?)

The best bet to fixing that leak is to get that boat out of the ocean all together. Take a break from the swells and breathe while on dry docks. Get a professional boat repair man. Invest in his advice, buy the supplies to keep it fresh and clean once it’s back on the water, and absolutely join a hole-in-the-boat support group. After all, there’s a decent chance that at some point that hole in the boat will come back. You’ll want another mama to cruise by in her motorboat when this happens.  You’ll want that lifeline and the invitation to a cup of coffee in her well stocked cabin to catch your breath until your own boat works again.

Since life is not apparently perfect, I’m kind of stuck in the middle between shore and open water. I’ve been organizing my own life, to help organize Stink’s, and we’ve made progress. I am avoiding a lot of frustration by accepting life on life’s terms. I am not focusing on what he’s behind on in school. (Um, everything.) Instead, I’m focusing on helping him get caught up with the goal that he’ll be doing this himself at some point.

This means coming home each day after school and doing his work in the same spot. It means having him diligently utilize his planner so that he’s not relying on his own brain to remember every little detail of his “overwhelming” (his words) seventh grade schedule.

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The challenge with using a planner is that you have to remember to take your planner home. And then, here’s the real rub: you have to find it in the first place. And when that task seems too monumental, you just throw yourself on the floor and scream like a Carolina fan reach out to an educator who knows you’re doing your doing your best to help your kid.

Here’s an email exchange I had yesterday with one of his educators, minus the teacher’s name because, you know, these teachers have nothing better to do than stalk their ADD student’s mom’s blog.

Hi Teacher Fabulous-

The last piece of my kid’s organization puzzle is his missing planner. He is out sick today so when he’s back tomorrow I will have him check his locker. If it’s not there, is there an extra he can have? If not, I will buy one and he will be held accountable.
If there is any homework you need him to do today, please feel free to let me know. 
Thanks!
Andrea

 **
  
Hi Andrea,
I don’t have any extra planners.  I gave my last one away a few weeks ago.
We are practicing percents in a new packet today.  Do you want to pick it up later?  Let me know.
Thanks,
Teacher Fabulous
** 
 
Hi again –  
 
Yes, I will pick it up today after school if that works for you? If not, you can leave it in the office. Whatever is best. 

Can I just pick up a planner at an educational store?
THIS KID. He better get with the program or I’m returning him. I have books to write.
Andrea
**
Andrea – 
I have to supervise out front after school.  I’ll do my best to remember to bring it out there with me so you can get it then.  

I would make your own life easy and just go to Target or Walmart for a planner.  
There’s a thirty day return policy…..sorry, you can’t return him!  🙂
Teacher Fabulous
*** 
 
Oh for f***s sake. 

Until next time, May God grant you the serenity to accept the tics you cannot change, the courage to change the tics you can, and the wisdom to know the difference.

My book is available on Amazon. Follow me on Twitter@AndreaFrazerWrites or on FB

Happily Ticked off

Tip #1 to Limit Tics: Reduce Electronics

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In this article, I wrote a list of 20 things I’m doing to manage tics. I broke the list down into simple changes/habits vs. more technical. Because it’s Christmas and I have so much to do that pretty sure I’ll be ticking myself, I am starting with the easy changes. I’d love your opinion, too!

# Tip to Limiting Tics: Less Screen Time/Video Games

This article by Psychology Today suggests a screen fast of up to 3 weeks to calm the tics down. “Electronic screen media—since video games and computer use increases dopamineand tics are dopamine-related, it’s understandable that electronic media worsens tics.  For bothersome tics, I recommend a three week “electronic fast”(link is external) to normalize brain chemistry and improve sleep (restful sleep improves tics in and of itself).”

Having gone back and forth with this for over 8 years (see this post from 2011 when I attributed the Nintendo DS to devil’s dung) I have a few things to say about an electronic fast.

  1. It works.
  2. But is it worth it?

Yes, there are many moms (such as this post from ACN shows) that have seen improvement with their kids’ tics by eliminating screen time altogether, but this can be tricky if you have a child like mine. Sometimes the pressure and sadness over not being able to do what he loves make my kid tic more.

Many of my super holistic friends, as well as Stink’s naturopath, are of the ilk that just because a kid likes something doesn’t mean it’s healthy for them. For them it’s a no-brainer (no pun intended on the messing up one’s brain-er part) that if something is bad for you, it must go.

I choose, for example, not to drink wine at all because 3 glasses of it makes me nutty. The thing with video games, for this mama anyway, is that I don’t find the usage – in moderation – to be the same thing as drinking and driving over squirrels with my kids in the back seat of the SUV (playing video games).

I’ve decided, after battling the video game demon for 8  years, that a few tics in exchange for moderate video game use is okay. It’s not an all or nothing thing for us. Combined with many other healthy alternatives, I’m okay with it. For my kid, I let him play as long as there are adequate boundaries around it.

Here’s how I handle the video game usage

  • None Monday – Thursday
  • 2 hours/day Friday/Saturday/Sunday
  • Exercise is a must – at least 30 minutes Friday/Saturday/Sunday
  • Continue with healthy diet (Zero gluten, dairy to be removed in January)
  • Adequate sleep
  • More to come when I go through the list

Video Games – The Great Motivator

My kid likes video gaming enough that I use it as a motivator to get stuff done. “Hey, Stink, want an extra 20 minutes of Mario today? I need my windows cleaned.” He wins, I win.

With my kid turning 13 in January, I am more and more aware that he is not a kid who fits the “norm” by any means. He doesn’t play sports. He doesn’t care about popularity. He reads a book a week. He loves drama.  He still collects Pokemon. And… he connects with other boys who play video games. I am not willing to take away this love for him.

ADD vs. Tics

I am now looking at video games more from the angle of ADD and less from tics. The tics aren’t a concern for him personally. He has friends and doesn’t mind some twitches and noises. I am realizing that the ADD is causing more of a problem than the tics themselves, and this is the new lense I am viewing the computer time through.

To the Young Moms of Kids Who Tic

With your little tickers so little, you have the opportunity to set up the culture of your home in a way that works best for you. When they are small, it’s easier to make big changes. It’s a personal choice but I say you should think about it.

Looking Back, Would I Make a Different Choice on the Video Games?

As for me, would I make a different choice on video games if my son were younger and I could set the parameters early? Maybe. But then again, even when he was small, I didn’t make the choice to eliminate them altogether. My husband is a gamer. My kid, even at 3, loved to play Elmo on the computer. I suppose, deep inside, I wish my kid was into other things, but he’s not, and guess what? I am doing the best I can. I set boundaries on certain behaviors, let other things go, and try to live with what is. (But I won’t lie: video game usage has been my biggest battle and one I still fight to this day. It’s tiring.)

What are your thoughts on this? Think I’m nuts for letting my kid play video games when maybe they would be less without them? (PS: My kid is back on Taurine and his tics are down 50%. Video game usage hasn’t changed. For me, I made the right choice. More to come.)

Until next time, May God grant you the serenity to accept the tics you can’t change, change the tics you can, and have the wisdom to know the difference.

My book is available on Amazon. Follow me on Twitter@AndreaFrazerWrites or on FB

I Don’t Know

As parents how many times a day do we hear, “I don’t know”?

“I don’t know why I don’t write down my assignments.”

“I don’t know why I didn’t turn in my assignment.”

“I don’t know where I put my water bottles.”

“I don’t know where I put my assignment.”

If I had a penny for each “I don’t know,” I would be rich. At first I took it as if my child wasn’t trying hard enough, so my response, my irritated response would always be some version of, “why don’t you know?”  I then became the teacher in Charlie Brown, “Wha, wha, wha, wha, wha!”  This did nothing for him or for me.  I had read all of the books, attended the webinars, but when you hear the, “I don’t know…” for the ten thousandth time, for me it wasn’t that he could not remember what he could not find, it was, it “is” the fear that engulfs me  for my son’s future.  This seemingly small, “I don’t know,” is bigger than those word three words. As a parent with a child with TS, most times things are not “just” small.

So, I made a choice to change how I operate, how I approach his “I don’t knows.”  It was time to put what I learned into practice.  I would love to say, the frustration is gone, but as quickly as it comes to mind, it disappears and we figure out what broke down.  My son and I say the following to each other all the time, “The definition of insanity is to keep ‘consciously’ doing the same thing over and over expecting the result we really desire.”  So the key is to find where the breakdown is.  The “fool’s gold” in all of this is that it is easy.  We have come up with systems that work for a while, and stop working.  The investigation begins, why is it no longer working?  Where is the breakdown?  What happened?  Did it ever work, or was that fool’s gold?  However, the light is when you and your child/teen finally find an answer to just one of the, “I don’t knows”, and it sticks and works, is worth it all.

Now, when it comes to the “Teen” “I don’t knows”  I still don’t know what to do about that!!!

 

What disabilities, disorders or conditions qualify for an IEP?

The following are listed as qualifying conditions, disabilities, or disorders for an Individualized Education Plan, or IEP.  The important thing to remember for any IEP is that the condition MUST affect a child’s educational outcome.  If they are brilliant and have no problems whatsoever with learning or adapting to a classroom environment affecting the ability to learn, chances are they may not qualify.

This is a very important thing for parents to remember.  Evaluations will be done to help determine disabilities, but parents should always find out ahead of time which ones are being done, and should also do some research to make sure they are the appropriate evaluations.

The federal criteria indicates a child must be impacted in the following areas to the point where they cannot perform at grade level when given instruction at that grade level. The term the federal government gives is “adversely affected”. The following are the educational areas where a child must be adversely affected:

  • Oral Expression
  • Listening Comprehension
  • Written Expression
  • Basic Reading Skills
  • Reading Fluency Skills
  • Reading Comprehension
  • Mathematics Calculation
  • Mathematics Problem Solving

The key to determining all of these criteria is is a history of assessments showing what areas a child may have struggled in, as well as a guarantee of appropriate professional instruction by an educator.  Once again, educational outcome must be affected!

The following are disabilities that can qualify a child for an IEP as long as they are adversely affected educationally:

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52 Weeks of TS: Week 29

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 28 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Oh to be back in New York City! Anxiety is here at full force, and OCD is crazy. What is it with this city? I’m here for a week, but I can’t wait to get back to Martha’s Vineyard. I think I need to move to a dessert island. The time I spent on Martha’s Vineyard was so relaxing, and now I’m trying to acclimate myself back to my New York state of mind. It’s hard. This whole week feels like a nonstop nightmare. I’m only here for a week, so I’m trying to get everything done that I need to. Work, doctor’s appointment, meeting, and the social events, it’s never ending.

I’m going to reflect a little on my last week’s entry, mainly my OCD’s. I complained about coming back to my house and it being in disarray. I know it was just me who thought it was in disarray, but it got me thinking. I have spent my whole life dealing with my OCD, but there are other people around me who have to deal with my craziness.

I give my husband a lot of credit to have the patience to deal with some of my weirdness. I look back and think, I have had quite a few different roommates in my adulthood, and I know they have all had to deal with my OCD. I feel rather bad for them, but I have to say, none of them have been too overwhelmed dealing with me.

Finally having some alone time this week gave me a lot of time to think. Even though I had a rather busy week it was nice to have some alone time to think. The only problem is, some of the thoughts that rolled through my mind were a little obscure.

One of my thoughts was that TS is a neurological disorder and animals have brains, is it possible for an animal to have TS or Parkinson’s? Animals get tumors, seizures and cancer like a human does, why not other things? What exactly would a dog look like if it had tic, or what would their OCD come out as? I guess it’s just one of those weird things that goes through my mind.

These strange mental journeys bring me to other places, too, the thought of the struggling countries all over the world. We in the United States have a pretty good medical institution where money is always being put into different medical studies in hopes to learn more. However, there are places all over the world where families struggle to feed their children or themselves and a medical system is close to nonexistent.

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52 Weeks of TS: Week 22

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 21 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Pinch pinch rub, Pinch pinch rub

Every once in a while I might do a tug

All day to the night, Until it feels right

Over and over, that’s the way that it goes,

That’s the way that it goes, with the tic of my nose

The loud clap of your hands, Brings the twitch of my neck

And the honking of horns, Brings the jerk in my back

I think there’s a new tic starting off,

Besides my hum, I now have a cough

I never reveal the real me,

I hide and I hide, suppressions my key

Behind closed doors, I jerk and I twitch.

This life with TS is really a bitch

But I write down my story and help people out,

There’s something to say, what our life is about.

My TS is no BS, my doctor gave me a dx

So stop staring and mocking, and pointing at me

Come ask me some info, education is the key.

Hello hello hello everyone. So I thought I’d start this week off a little different, with my little attempt at poetry. Whether its good or bad, it’s all about expression. We have to open our mouths and express ourselves. I’m always trying to educate someone about TS, but I’m also constantly learning more and more about my TS and myself.

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School meetings: How to make them easier

Ken Shyminskya former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as a teacher and student with Tourette Syndrome to help children with TS and related disorders. He also has Tourette himself and is the founder of the website Neurologically Gifted.

School meetings are most often difficult for the parent but so important for your child.  Your child is special, requires special accommodations, your child’s behavior doesn’t follow the normal or expected behaviour or your child isn’t learning as well as he or she could.  Perhaps it’s not your first meeting or perhaps the strategies being implemented aren’t working.  Perhaps your child’s teacher or school administration isn’t understanding your child’s difficulties and differences or are unable to offer help.  In any case, it usually provides for a stressful time for the parent….trying to make things better for your child.

I have attended countless school meetings.  My son, having Tourette Syndrome, Attention Deficit Disorder, Obsessive Compulsive Disorder and Oppositional Defiance Disorder, provides an unending barrage of challenges for the adults who help to shape his life.  Some of these school meetings have gone well, some have been a complete disaster.  I have survived them, dreaded them and finally, I now feel blessed that the adults in my child’s school understand his differences, see his challenges and strengths, listen to him and help to guide him and teach him.

School Meetings  NeurologicallyGiftedIn the past, have been at school meetings because my child was suspended for behavior that was out of his control.  I have been to school meetings where I have been face to face with an adult who told my son he was faking and didn’t have Tourette Syndrome or coprolalia.  I have been to school meetings where I have been asked to keep my child home for all or part of school days.  I have been to school meetings where administration has asked my child’s psychiatrist how they can “turn a blind eye to his behaviour and just let him get away with it?”  It has been a very heartbreaking and difficult road.

I have not always been able to follow these tips that I will share, but I do know that even the really, really bad school meetings would have been a little better if I had been able to remember the following things:

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Cresskill School District raises more than $900 for NJCTS through Jeans Day

The Cresskill School District participated in the first annual Tourette Syndrome Awareness Day on Friday, May 16, in recognition of Tourette Syndrome Awareness Month.  The goal was to raise awareness and educate the entire student body and Cresskill faculty about the neurological disorder.

Tourette’s is an inherited neurological disorder characterized by repeated involuntary and uncontrollable vocal (sounds) and motor (physical) movements also known as tics. Tourette’s and its associated disorders (ADD, ADHD, OCD, anxiety) occur in 1 out of every 100 children.

The day was spearheaded by a brave Merritt School fourth-grader who has Tourette’s.  Students were encouraged to wear green in a show of solidarity for those affected by the disorder and staff were given permission to wear jeans for the day in exchange for a small donation.  The students and faculty raised more than $900, which will be donated to the New Jersey Center for Tourette Syndrome (NJCTS).

52 Weeks of TS: Week 5

EDITOR’S NOTE: On Tuesdays over the next year, noted Tourette Syndrome advocate Troye Evers will share his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first four weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Anxiety is an evil beast living inside me, taking up residence and using my body like an apartment building. It’s living in apartment 3-B, right next to OCD and ADD. I never said that they could move in, in fact they never even signed a lease. Sometimes I wish I could evict them, but if they never moved in what would you be reading right now.

Every Sunday I reflect on my past week, and every Sunday I’m amazed at all the activities and experiences that have occurred. This week has been quite an interesting one to say the least. Monday I had my physical for my life insurance policy. Now this was not a normal physical where you go to the doctor’s office, the doctor actually came to my house. At first I thought, wow, this is convenient. OH NO! I did not take into consideration that he was going to be taking my blood and need a urine sample.

Oh yeah, I had to urinate in a cup in my bathroom and transfer it into two test tubes. I gave him the test tubes and watched him put the test tubes on my dining room table. He then proceeded to take my blood. Yep, I sat at my dining room table as this stranger took my bodily fluids. I sat there and just stared at these vials of blood and urine on my dining room table. I just silently screamed in terror and disgust. I spent the rest of the day cleaning my table, and bathroom. (Excuse me while I go antibacterial my hands).

That night, was not the best night’s sleep. I don’t normally tic when I’m asleep, but there have been occasions when I tic in a dream and actually tic in reality and wake myself up. I did this that night, and despite the fact that I had just went to sleep two hours prior, I couldn’t get back to sleep.

My OCD just started going in over drive. My brain went into full gear, and it didn’t help that my husband was snoring next to me. It’s been thirteen years with my husband, and his nightly snoring. I’ve pushed him, rolled him over and took his pillows away, but he still does it. I’ve considered earplugs, but then my OCD goes on a tangent.

What happens if I have the earplugs in and there’s an emergency in the building like a fire? I won’t be able to hear them pounding on the door, and my husband sleeps through everything. So in other words, earplugs equal death. My tics start about fifteen minutes after I wake up, so after about a half hour sitting in bed, my brain is racing, husband snoring, and tics a ticcing, I got up and went to the living room to watch the brilliant TV programming that is on at two in the morning.

On an exciting note, I have made an appointment with a TS specialist at Columbia University.

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Send my child to a Tourette camp?

EDITOR’S NOTE: This blog is about camps for Tourette Syndrome children. For anyone living in the New Jersey/New York Metro area, Camp Carton is taking place July 14 to 20 in Rhinebeck, N.Y., for kids with TS ages 10 to 12. Also, the NJ Center for Tourette Syndrome annually hosts its Family Retreat Weekend in June at YMCA Camp Bernie in Hunterdon County, N.J. Registration for this year is closed now, however.

I recently attended the National TSA Conference held in DC. It was nice to see old faces and meet new ones. The new Executive Director, Annetta Hewko, has some great ideas, new insight, and is excited to be a part of the TSA. During the conference I spent one of the days attending the “Newly Diagnosed Seminar” that typically occurs the day before the main event. I am always interested in hearing about anything new, and what parents of newly diagnosed children are being told. One mother raised her hand and asked a question that went something like this …

We haven’t really talked much to our daughter about her having Tourette Syndrome. I’m not sure how much to tell her, or focus on the Tourette’s. I am not sure if we should have her around other children with Tourette…would you recommend sending her to a Tourette camp? He said no…he would rather see our kids at regular camps instead…

My heart hit the floor…right outside the door of the conference room sat about 30 teenagers with TS that had just spent the last few days together with the TSA’s Youth Ambassador Program…we could hear them laughing, talking, and giggling. They were happy and having fun. The last few days empowered them to embrace their disorder, be comfortable in their own bodies, and advocate for themselves. I know this first hand because my son has been a Youth Ambassador for the past 7 years. The speaker from the seminar and I had a quick chat after the talk and he apologized.

To me her question seemed more about being comfortable and accepting the diagnosis. Should they be embarrassed by it? What do we tell people we know when so much of this disorder is misunderstood? Do you tell family and friends about it? Should we embrace it or hide it? Will my child get worse if I subject her to other people with TS?

Our adults with TS explain to me that sometimes they’ll mimic other tics for a bit…but that they go away. They also describe that tics are always changing anyway. The kids explain to me that being with others who have TS makes them more comfortable in their own bodies…some for the very first time. Some tic more when they are stressed…they may also tic more because they are excited, comfortable, and happy.

Honestly…Tourette camp is not about Tourette. It’s about challenging everyone in a safe environment, becoming independent, working through their anxieties, learning new things, making new friends, and most of all having fun! What I see are kids that are happy and having a great time.

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