WEDNESDAY WEBINAR: October 9 — “Dealing With School Refusal”

School refusal describes the disorder of a child who refuses to go to school on a regular basis or has problems staying in school. Children with school refusal often complain of physical symptoms shortly before it is time to leave for school or repeatedly ask to visit the school nurse.

This widespread disorder will be in the crosshairs during the next New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) Wednesday Webinar – “Dealing With School Refusal” – from 7:30 to 8:30 p.m. EST on October 9.

This webinar will be presented by regular NJCTS presenter Dr. Robert Zambrano, Psy.D, who will discuss anxiety-based sources of school refusal, its associated impairment and recommended intervention strategies. Emphasis will be placed on tailoring behavioral interventions to the reasons behind the school refusal and collaborative work among all involved systems.

Dr. Zambrano received his Doctorate of Clinical Psychology from the Graduate School of Applied and Professional Psychology of Rutgers University, and works in private practice at Stress and Anxiety Services of New Jersey in East Brunswick.

He specializes in working with children and adults with Tourette Syndrome, OCD, depression and other anxiety disorders. Dr. Zambrano also is certified to work with patients who have been diagnosed with Trichotillomania and other body-focused repetitive behaviors by the Trichotillomania Learning Center.

NJCTS launched the monthly Wednesday Webinar series, which draws an audience from 48 states and 13 countries, in 2008. The series, offered at no cost to participants, features online seminars for parents, educators and professionals on topics of interest to the TS and associated disorders community.

Professional development credits are given upon verification of attendance and completion of an exit survey. Credits are distributed by mail one week after the webinar. You may register for this webinar or view/download past webinars. More information about NJCTS is available by visiting www.njcts.org.

Updated supplement list

Many of you have asked about Stink’s Supplement List. I have written several posts in the past about it here. But here is an update.

Please note: This is what works for Stink, but might not work for you. TS is wonky, with some folk needing specific supplements for their kids with OCD or ADD or more. Although you can do what I did and fight with your husband about wacky supplements you buy off the internet, vitamin shops or simply the hippy at the Renaissance Fair who claims to cure head nods through hemp and organic whale balls, I suggest you go through a homeopathic doctor or expertly trained nutritionist.

Neurologist Warning: Do not expect a Western Medicine trained neurologist to tell you how to help your child naturally because they will look at you like you are a Cling-On and write you off as Jenny McCarthy’s best friend with more conspiracy theories than Shirley McClain.

Dosages (Taken morning only with food)

  • 1 Chewable Suntheanine Natural
  • 1 Nordic Naturals Children DHA – 250 mg
  • 1 Magnesium Citrate – 200 mg
  • 1 Taurine – 500mg
  • 1 Vitamin Code Raw B Complex
  • 2 Juice Plus Fruit Chewables
  • 2 Juice Plus Veggie Chewables

Diet: In addition to supplements, Stink is 80 percent gluten and dairy free with loads of fresh fruits and veggies. We are working our way into the “Organic Only” zone, but I have to do this slowly or my head will explode which isn’t amazing for tics control.

Update on Stink as of September 2013: He was on 2mg of Intuniv for focus but now is not as it made him very tired. I will consider something else for him if his academic and personal life are adversely affected. Also, he is only taking the Juice Plus now as we have been lazy and so far tics are still very manageable. As soon as there is a spike we will go back to the regular routine again.

Is ADHD preventable through restful sleep?

What you don’t know can hurt you, say integrated health specialists Dr. Michael Gelb and Dr. Howard Hindin.

“Ninety percent of our brains are developed by age 12, so I’m asking parents to think about how a recurring decrease in the flow of oxygen and restful sleep to their child’s brain would affect his development,” says Dr. Gelb of The Gelb Center in New York, a holistic dentist known worldwide for pioneering integrative treatments.

“Pay close attention to your kid’s breathing; if he or she is suffering from a sleep disorder, it may very well be obstructed breathing, which has been linked to attention deficit hyperactivity disorder, that’s causing the problem,” says Dr. Hindin of the Hindin Center for Whole Health Dentistry, who partners with Dr. Gelb in an interdisciplinary approach to treating chronic disease. “Medical literature suggests that up to 80 percent of ADHD diagnoses have an airway/sleep component.”

October is the awareness month for ADHD – a non-discriminatory, brain-based medical disorder affecting people of every age, gender, IQ and religious and socioeconomic background. ADHD also is often one of the many associated neurological conditions that can present alongside Tourette Syndrome.

The good news, Dr. Gelb says, is that many such disorders are preventable. Continue reading

Helicopter Parenting Alert: When do you step in?

I’m not a fan of helicopter parenting. Part of that results from the fact that I was always too busy socializing with other adults than to actually pay attention to my son freaking another 3-year-old out about some Scooby Doo zombie mystery. (Or spitting with bull’s-eye precision down a plastic volcano at an indoor play yard. That went over really well with the yuppie parent in the Ugg boots who called Security on me when I told her to buzz off and stop acting like a Nazi.)

My flaws aside, I do believe that our kids have to fight their own battles or we’ll end up with adult babies who cry the moment their boss tells them their perfect presentation actually was more of a bomb than Miley Cyrus’s latest performance. It’s up to us to teach our kids how to navigate tricky waters — not row the boat for them.

But when does the boat get so full of water it’s time to call in the rescue? I know that with my son and his “bully” situation, we’re far from calling in for a rescue. But, truth be told, I went behind his back and told a friend of mine (whose kid is friends with one of the bully kids) to have “the kindness conversation” with her son.

Is that too sneaky? Would you do that? And furthermore, do you think I was too hard on my son when I told him that those kids just didn’t like him, like in the last post?

A few of my friends had looks of “ewww” on their faces when I told them the story. I saw it as being practical and enlightening. They saw it as a bit harsh. Would love your opinion.

P.S. — One of you wants my supplement list. I will do that next post for you. I will say for now, however, we are off the focus pills. Intuniv was great for 1.5 years, but my kid wanted a break from feeling tired and sleepy. He said it made him feel less like himself. My motto is always to go more drastic when a kid’s social, emotional and academic life are threatened. (Maybe I need to remember that advice with the bully situation also!)

When people speak out, mountains can be moved

Awareness. Acceptance. Action. Advocacy. All needed when it comes to informing people about Tourette Syndrome at the national, regional, state and local level. Our Facebook page (give us a “like”! :) ) is dedicated toward these very things, especially when it comes to supporting the proposed federal Tourette Syndrome legislation.

Yes, we have a request of you. And no, it won’t take more than just a few seconds. If creating a better future for children with Tourette Syndrome is important to you, then there should be no reason why you don’t click here and support the proposed federal Tourette Syndrome legislation.

You can leave your Congressional representative a note just like this one and show them that Tourette Syndrome legislation is important to you, just like it is in Nebraska:

PeggyNietfield in Nebraska’s 3rd District

I have a child diagnosed with Tourette’s and he is being left behind in school. I have a story to tell that will not fit on this page. I am pissed off that he is bullied constantly in school because of his quirks and the schools do very little to help him out. I am a frustrated and angry mother who wants to see change. This past year I went to my son’s school and told the math teacher of my son’s struggle in her class and that I wanted to be her extension at home. I was shut down by the teacher who yelled at me for me wanting to be an advocate for my child who had consistently over the year had dropping grades in many of his classes. When asked if she would talk to his doctor, who is a behavioral specialist, I was told she did not do that stuff he was the same as everyone else and all doctor correspondences needed to go thought the counselor or his case worker the SpEd teacher who has done very little for even though he has an IEP. By the way he was to have his 3-year re-evaluation (paperwork sent home in January) and it is now August and the re-evaluation has not been done.

Also, be sure to read this awesome take on the legislation from KateE, who does an amazing job with the Tourette Syndrome Awareness Movement page on Facebook!

Sorry, kid, they just don’t like you

For those of you who read my post a few weeks back, you are aware that Stink had a rocky start to school. It got a bit better, but then it kind of went downhill again.

Turns out the same kids who have been giving him a hard time since kinder are back at it again. This time, instead of making comments about his tics, they are just doing the passive aggressive “we don’t like you” dance. Actually, they might have actually said the words “we don’t like you” at one point, but since our school does not allow for this sort of talk, it progressed into silent avoidance.

For whatever reason, I am not falling apart emotionally over this. Part of the reason is that Stink really knows who he is but it doesn’t define him. Also, while I’m not a fan of the mob mentality, I also know that not all kids are going to get along all the time. That’s just not reality.

The way I see it, there’s a balance between teaching your kid that the world doesn’t revolve around them and teaching them how to stand up for themselves. And, since I’m such a big fan of an upgrade, this balance always includes transformation, both for my kid as well as the child who is hurting enough to lash out at my kid.

Here’s a conversation we had last week on the subject. Pick and choose what works for you and feel free to give suggestions: Continue reading

Person > Label

Each and every case of Tourettes is unique, but we all have similarities, a connection. Sometimes I feel like I want to be separated from TS and OCD, to just be me without having to worry about what I look like when I’m ticcing in public or what people think when I make funny noises or get upset over something that may seem trivial to them, but is part of what makes my day go on.

I just started a new job and it’s hard enough being someone who isn’t traditional by nature, because people don’t accept different and they’re intimidated by it. So it makes it that much harder having to tic in front of them. Every time I go into a new setting I have to go through the steps:

  • Start with facial tics, because they’re less noticeable.
  • Next a few neck and arm “stretching” tics, because they look natural, right?
  • Then most of my quiet resolve dissolves into upper body shaking tics and some lower body if I’m standing.
  • Then come the ones that may seem a little more embarrassing or scary looking: sticking my tongue out or hitting my arms against my sides.
  • Finally, the pièce de résistance … What do I do about my vocal tics??? I don’t get them very often, but when I do, there’s nothing subtle about them. Ever since I’ve grown up I think I’ve struggled more with those and have yet to come to terms with them. I developed a little bit of a stutter now and again and I do bird calls and random noises.

I recently started a new job, and I’m in this 15×20 room training with over a dozen other people and I tic in front of them all the time. I went through all the steps, only treading lightly on that last one, but I’ve done it. I tic and I sign in front of them and I don’t care. It feels so good and it makes me feel like I’m just a person, not a label. When I’m able to do that, I can get out of my own head and see other people and things. Although I have to be pro-active in said process too, I couldn’t do it without God and my family.

Check out this guy on X-Factor who has TS and OCD. Here’s the article and video. It takes a great support system to have the courage to do what he did. 🙂

I wonder a lot of things about Tourette Syndrome

Ever look at this map and wonder??

I wonder why the East Coast appears to have such a higher incidence of TS. Is it because most of the major research centers working on TS are in the east??

I wonder about how the data to make this map was collected. Seriously, WHO is keeping track of the number of people with TS since when I go looking for statistics I find conflicting information on EVERYTHING.

I wonder about a lot of things Tourette’s-related and with most there is not much I can do to help find the answers. But there may be a way to help: the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 is a bill that has been referred to Congressional committee and it could use our help.

The Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013  will amends the Public Health Service Act to require the Director of the National Institutes of Health (NIH) to expand, intensify, and coordinate NIH programs and activities regarding Tourette syndrome. It:

  • Requires the Director to develop a system to collect data on Tourette syndrome, including epidemiological information regarding its incidence and prevalence in the United States, primary data, and data on the availability of medical and social services for individuals with Tourette syndrome and their families.
  • Requires the Director to award grants and contracts to public or nonprofit private entities to pay costs of planning, establishing, improving and providing basic operating support for between four and six centers of excellence in different regions of the United States to conduct basic and clinical research on Tourette syndrome.
  • Requires the Secretary to designate a portion of the amounts made available to carry out NIH programs and activities for a fiscal year to carry out programs and activities with respect to Tourette syndrome.”

Right now, the bill needs help — a lot of it. Helping is simple: Just follow this link, click “support” and the site will help you send a letter to your congressperson asking them to support the bill. It’s easy. But right now, the bill has next to no chance of making it through Congress, but if enough of us support this and get our friends and family to support it, it could happen.

Always on the clock

Started my 4th week of teaching yesterday, and it’s been a roller-coaster of emotions. My time management skills have proven only that I’ve given the majority of my time to my job and rarely anything else. It will get better.

Jacob has been doing well. His dad has been playing the part of mom and dad, and I feel terrible that I’ve been so busy. He’s in very good hands, though, and I’m thankful that his dad and grandma have been taking such good care of him.

His tics are still a day-to-day battle to keep under control, but middle school has his days filled with new experiences, and so far no one has made a big deal of his movements. Some of his teachers have even reported that they rarely see them.

I hope everyone is hanging in there, and we shall prevail … one way or another. May each of you be blessed and know that you’re always in my thoughts. Busy bee I am, but I’m always on the clock for my son and keeping with the mission to speak out with and for Tourette Syndrome. Battle on!

Dating

I’m not sure how to handle this. These days, when a 15-year-old boy gets a call from a girl who wants to go out with him, it’s not considered unusual. But my son is not a usual 15-year-old boy. This is a kid who’s at about a 12-year-old level in terms of physical development.

He’s 4-foot-8 and just starting to go through puberty. Socially and emotionally, he’s much younger. He plays with elementary school kids as though he’s a peer, not a babysitter. He gets food all over his face and clothing when he eats, and he doesn’t care. So long as his clothes aren’t wet, they don’t bother him. Mom and Dad need to remind him to put on clean clothes and to brush his teeth and shower.

Normally, teenagers get together to hang out with friends without parental supervision. Supervised “play dates” were for when they were 6 years old. My son still needs supervision. He’s in Boy Scouts and is the only scout who has to have a parent along at all meetings and outings.

Otherwise, he is likely to get “bored” and do disruptive things like running up to a group of boys and swinging his fists around or banging incessantly on the furniture. Without a parent to curb this behavior it would get out of control. Some other parents in the troop are concerned that my son is a danger and might hurt their child.

How can a boy like this possibly be ready to date? He says he’s ready, but I don’t think he really understands. Continue reading