A plea to all parents of special needs kids

EDITOR’S NOTE: This blog entry was originally written to parents in Delaware, but the general theme of it applies to parents everywhere!

When I started this blog journey by telling my son’s special education story from a Delaware Charter school, I promised I had no political agenda.  That has changed.  The only way things can change for these kids is through legislation and hammering the points home to those who need to listen the most.

I am not running for any type of office, but I believe new legislation needs to be passed so children with special needs and disabilities have more rights in the state of Delaware.  I have talked to many parents from different states, and when they hear about the types of things that go on in Delaware in terms of special education, they are shocked.

All special needs parents need to stand united.  We need to stand up to the schools and let them know they are not doing the best they can.  Some teachers do, some special education specialists do, but not nearly enough.  No one knows our children better than we do.  So why must we fight so hard to get our children what they deserve?  Why do we have to go to endless meetings and fight for even the most basic of accommodations?  Is it a funding issue?  Is it that the schools are so arrogant to truly believe they know what is best for OUR children?

Things need to change, and they need to change as soon as possible.  I go to a support group for special needs parents.  Tonight was our last meeting until September, but I know we will all be there to support each other over the summer.  Every town should have one of these groups if they don’t already.  It has helped me, and I know it has helped others.  The biggest thing for these types of groups is confidentiality.  I promised everyone I wouldn’t blog about their experiences!

As parents, we see what our children go through.  We see their daily struggles at school and home.  We know immediately when they need us more than the school.  We know why they do certain things that the schools just don’t seem to understand.  We understand that all their behavior is not intentional.  What we don’t know is why the schools don’t want to get this.

The Delaware Department of Education is having their monthly school board meeting tomorrow in Dover at 1pm in the Townshend Building, across from the new library.  On their agenda is to go over the IDEA Annual Performance Report.  I am very interested to hear what is in this report.  I can guarantee not every single special education matter is in that report.

Many parents who have gone beyond the DOE know this.  The DOE knows this.  So what happens to all of those children who are not accounted for in that report?  According to the DOE website, there are very few due process hearings in Delaware.  Those that don’t go to a due process tend to get resolved through a mediation of some sort.

I spent hours last night going through these reports from the Delaware DOE on their website:  Continue reading

New “Goodreads Group” for Tourette Syndrome-related literature!

The more popular self-publishing becomes, the more books there are on the market about Tourette Syndrome and similar neurological disorders, particularly memoirs. That’s why I was surprised when I tried to look up groups on Goodreads for Tourette Syndrome awareness, and not much came out of the search.

So I started the group, “Tourette Syndrome Awareness Reads.”

Goodreads Tourette Syndrome Awareness Reads Group

Its purpose is to give us a place to productively discuss literature that includes Tourette Syndrome in a positive, encouraging environment. Not all Tourette Syndrome literature is created equal; some books are hidden jewels, while others probably shouldn’t mention the disorder at all. I’d love to see people discussing these pieces of literature more so that we can work to find what the world of Tourette Syndrome really has and really needs. I’d also like to see books discussed that include comorbid disorders, or disorders that often occur with Tourette Syndrome.

If you have any suggestions for the group, please feel free to email me. I’ll do my best to bring some books to the table for initial discussion, but I’d love to see other people bring their finds as well. Thanks so much for your support, and have a great start to your week!

Tourette Syndrome groups for children and adolescents

The Tourette Syndrome Program at Rutgers University, in collaboration with the New Jersey Center for Tourette Syndrome (NJCTS), is now recruiting for a 10-week program uniquely designed to help youth learn about tics, build confidence, and navigate the various social issues that often come along with having Tourette Syndrome (TS).

Who are the groups for?

The groups are for children and adolescents ages 6-17 with TS or chronic tics. A pre-group screening is required to ensure that the program is an appropriate fit for each child’s developmental level.

What will the groups cover?

The specific components included in the group are based on recent research completed at Rutgers and include:

  • Education about tics and TS
  • Identifying and managing difficult thoughts and feelings
  • Solving interpersonal problems related to tics
  • Improving communication skills
  • Talking to others about tics and responding to teasing

The groups provide a supportive environment for children and adolescents to meet peers with TS, discuss their experiences living with the syndrome, and give and receive advice. Past group members have enjoyed speaking freely about their tics while learning strategies for living with TS in a fun and interactive manner.

When and where are the groups?

  • 6:00 – 7:30 PM on Thursdays from January 22 through April 2, 2015 (10 weeks of group)
  • Rutgers University, Busch Campus, 152 Frelinghuysen Road, Piscataway, NJ

How much do the groups cost?

$200 per child for all 10 groups

Registration Information

Space in the limited so reserve your spot today! For more information or to sign up, contact the Tourette Syndrome Program, at 848-445-6111, ext. 40150.

I spy new science on tic relief

spies

Everyone in my group is kind of freaking out about tics, including me. Not sure if it’s Christmas or the weather or just stress from school, but they are in high gear.

As a background, most of us have kids between the ages of 8 and 12 — the majority being boys.

Most of us moms are trying super hard to “accept” this condition and all that goes with it — the ADD or the OCD, the “spectrum” like symptoms ranging from obsessions over video games to underlying defiance.

Lest any of you are new to the TS scene, let me reassure you that NONE of the kids in my private group are seeing shrinks for outrageous behavior that is often associated with Tourettes in the media. In fact, the more parents of neurotypical kids I chat with the more I see that talking back, wilfulness, and general lazy butt behavior is developmental for all kids.

The best thing I’ve discovered is to not freak out about any “issues” being TS-related, but simply treat them the way I would treat my own daughter’s turd like the-world-revolves around me attitude at times. This entails a “It’s my home/my rules” full frontal attack.

I don’t feel bad about it.

I don’t spend give Tourettes a free pass for bad manners, selfishness and poor attitude.

For the most part, I’m realizing that tics are here to stay and the best thing I can do as a parent of my beautiful son is to encourage his gifts, not obsess about his “flaws” that — let’s get real — are not really flaws. Continue reading

Money matters: Presentation on financial planning for children with disabilities coming to NJ on 11/7

We encourage anyone within driving distance of Denville, N.J., to take advantage of this valuable presentation!

The NJCTS Parent Connection at Morris/Sussex scored a successful debut on September 12 when it bridged the gap for parents of children with Tourette Syndrome and other associated neurological disorders who often find it extremely difficult to locate, get to know and ultimately bond with other families struggling to mitigate through similar circumstances.

The Tourette Syndrome Association of New Jersey, in collaboration with the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), hopes to build on that momentum when it partners with the nationally renowned Cole Shotz law firm to foster a discussion about establishing trusts to provide financial security for children with disabilities at the next NJCTS Parents Connection at Morris/Sussex meeting on Thursday, November 7, at St. Clare’s Hospital, 25 Pocono Road in Denville. The meeting will run from 7 to 8:30 p.m.

The NJCTS Parent Connection is a bi-monthly meeting designed to provide face-to-face discussion, encouragement, friendship and networking for TS families through focusing on coping strategies. Tourette Syndrome – an inherited, misdiagnosed, misunderstood neurological disorder that affects 1 in 100 children – is difficult to live with and often can be very complicated and frustrating for fathers and mothers.

Part of that difficulty includes coming up with the necessary funds to combat the sky-high cost of caring for a child with a neurological disorder, such as TS, or another disability. A lack of planning – whether or not the use of a trust is involved – can negatively impact a family’s ability to receive government assistance for their child. During this meeting, discussions on the funding of trusts, financial planning and issues such as the designation of a guardian for a child with special needs upon his or her attainment of age 18 where appropriate will take place. A question-and-answer session will follow the Cole Schotz presentation.

“Parents of children with Tourette Syndrome often express the need to connect with other families in their area,” NJCTS Family Outreach and Volunteer Coordinator Leanne Loewenthal said. “The NJCTS Parent Connection is an opportunity to get to know parents nearby and share the joys and challenges – including financial ones – of living with a child diagnosed with Tourette Syndrome. A support network of others is vital to a family’s success, so we hope all TS families in the Morris/Sussex county area seek to ‘make a connection’ at this important, informative event.”

The NJCTS Parent Connection at Morris/Sussex is scheduled to meet in 2014 on January 2, March 13 and May 8. If you do not live in the Morris/Sussex county area, there are four other regional NJCTS Parent Connection locations throughout New Jersey:

  • Middlesex/Union counties: JFK Medical Center in Edison
  • Somerset/Hunterdon counties: Somerset Medical Center in Somerville
  • Atlantic/Ocean counties: Richard Stockton College in Galloway
  • Burlington/Camden counties: Virtua Hospital in Marlton

Families interested in participating in the November 7 NJCTS Parent Connection at Morris/Sussex should RSVP by e-mailing Leanne Loewenthal at LLoewenthal@njcts.org. As a NJCTS Parent Connection date approaches, please stay tuned to www.njcts.org for updates on if the group still will take place on that date.

We just want our son to be happy

When you find out you’re pregnant, you are the best parent you will ever be. Everything you do will be perfect, your child will be well behaved with good manners, an excellent student, an athlete, president of the student council, or join every club you did.

The first time I felt Jacob kick I knew that was my little soccer star. As I planned out his childhood while pregnant, he continued kicking and pushing on me. The first time the doctor put him on my chest, I felt fear like I have never known. How do I keep this baby alive, much less turn him into the soccer star I imagined?!

Today, I got mad at Jacob for repeatedly telling me the same story I told him last week. He always repeats my stories back to me several days or weeks later. I used to think he was searching for validation or something like that. Now I know he just can’t help but do it, no matter how many times I tell him to stop.

I have to remember to breathe, tell him it’s OK, but no, it’s really not a good time to rehash my latest story. I close my eyes and remember the first time I saw him in the delivery room, how perfect he was, and how everything changed for me. Little did I know that he would eventually change me in ways I could never have imagined.

His first year was a blur. He was so busy, always moving, laughing, kicking, wiggling, and entertaining us with his silly ways. He was adorable and sweet but BUSY. He has never been still. He eats well and always has. He was spirited as a toddler. We did the terrible two’s for two years with him. When he was almost 3, we had our second son.

Jacob was loving with him after getting over a bit of jealousy. But it took another year for his behavior to improve. He wouldn’t sit still for story time and hated being read to. He wanted to be up and playing. He wouldn’t stop to color. He slept pretty well but that wasn’t surprising because he was always going when he was awake.

Around the age of 4, I started noticing things — little oddities here and there that I couldn’t put together. There was just something different about him that I couldn’t put my finger on. Continue reading

Still thinking about Camp Bernie

It has been just over a month since my family and I attended the annual NJCTS Family Retreat Weekend at Camp Bernie for the 5th time, and I am still thinking about the experience.

Every year, I look forward to catching up with folks that I only see at the retreat, participating in the support-group discussions with other parents, and enjoying the camp activities. Reconnecting with our old friends, and meeting new families, reassures my wife and me that we are not alone in the struggles (and unique joys!) of living with children affected by TS.

This year, despite my wife breaking her ankle just before the teen discussion panel (!), I left camp rejuvenated and inspired.

What I look forward to the most at Camp Bernie, however, is watching my daughters. It is one of the few places outside of our home that they can tic with little to no anxiety or embarrassment, and it provides them with a valuable opportunity to interact with others that have TS.

The welcoming environment not only makes them feel that they are an integral part of a larger community, it fosters their confidence in who they are and what they have to offer.

My younger daughter, who has been very resistant to standing on a stage, spent hours practicing with her sister to perform in front of everyone at the talent show, while my older daughter, recognizing that what she has to say is important and may help others, participated in the teen discussion panel.

Over the years, I have watched them grow to be self-assured kids who advocate for themselves and others, and their experiences at Camp Bernie have undoubtedly been an important part of this process.

The annual retreat has had a tremendously positive impact on our lives and others who attend. I look forward to participating in future years and meeting new friends, watching our old friends continue to grow, and, most importantly, taking my daughters to a very special place where they can just have fun.

Laugh out loud

Ever have one of those laugh or cry moments? Tourette Syndrome can be frustrating, overwhelming, maddening, etc., but it can also be funny or silly. I’ve had people ask me this question soooo many times and I’m thinking: Where do I start? Do you want the manual?

SO WHAT TICS DO YOU HAVE?

tumblr_inline_mnn48ppweM1r1ma4eI love the above meme because it illustrates the answer to this question so perfectly. What I usually do when asked that sort of question is just rattle off the first dozen or so that come to mind.

So the meme out there these days for all of us Touretters is Tourette’s Toucan! Some of them are funny or awkward, some are just irritants that we experience, and mostly all of them are relatable. If you click on the link attached to the site name and click on “Memes only” in the bottom right hand corner, you can take a look at all of the ones posted so far, but for today I’m going to name a few moments of my own. If you don’t have TS or don’t know a whole lot about it, some of the memes may be confusing, so feel free to ask! Continue reading

My TS, My Story, Part 3: How I cope with tics

Part of the Tourette Syndrome Foundation of Canada’s mission is to help individuals affected by TS through programs of self-help. That is why our posts this week will focus on self-understanding, self-knowledge and self-awareness. Today’s post is from Tina T.

closeup-on-womans-hand-writing-in-planner460x300Over the years, I have noticed changes in myself — who doesn’t as they get older? Similarly, I’ve also noticed changes in my tics.

As I mentioned in part two of this blog series, people with TS sometimes get a physical clue that they are about to tic. Today at the age of 24, I’ve learned to recognize the buildup of tension in my body that precedes my tics; I feel I am able to recognize which body part needs to move by the buildup of tension I feel.

I have always wondered if others with TS also can recognize the signs that a tic is going to happen. Continue reading

Looking for more support for my 12-year-old son

I have a son with Tourette Syndrome and Obsessive Compulsive Disorder. I want to share what I have learned over the years and perhaps learn something new from other parents. My son was diagnosed around age 7, and he will be turning 12 soon.

We have learned a lot over the years and have had the good fortune of finding wonderful doctors and therapists. I am tremendously grateful to them for the strides my son has made over the years.

Like those with TS know very well, there is a constant waxing and waning of symptoms. My son started middle school in September, and to my surprise the transition went better than I expected. My son is a very hard worker with a lot of determination and that certainly has a lot to do with it.

Over the years, I have been very disappointed with the lack of support groups for children with TS & OCD. Although there are many options for the parents, I have yet to find something where kids could meet twice per month to talk about what it is like living with Tourette.

I feel this is so important and so desperately needed. There is nothing like being able to talk to someone who truly understands what you feel and what you go through on a daily basis. My son is social and does have some very nice friends who seem to accept him for who he is, but I would love to meet another family with a 12-year-old boy in the State of New Jersey.

I think it would help my son feel that he is not alone and hopefully will help another child, too! We will be at NJ Walks For TS at Ramapo College on April 14. I am hoping we meet some people and maybe can exchange e-mails.