Looking hard to help our 11-year-old son

I have an 11-year-old son named Tommy. In Tommy’s 1st-grade year, he started to develop tics. We, his mother and I, did not really recognize what they were. We made what I now know to be the common mistakes parents make. We attributed his blinking to a vision problem possibly. His repetitive throat clearing and sniffing noises to allergies, etc, etc.

We were fortunate enough that Tommys 1st-grade teacher had raised a child of special needs herself. Her son was 23 at the time. During the course of the school, year the phone calls began. From academic performance problems to behavioral problems. By the end of the school year, we were faced with either classification or retention.

Tourette was not something we were remotely familiar with.

We did, however, bring him to the Children’s Specialized Hospital in both Toms River and Hamilton for an evaluation. The results indicated the ADHD, ADD, OCD and whatever other abbreviations they assigned to him. No mention of TS. Retention was the decision over classification.

The next three years passed. 1st grade over again; Tommy did fine. Mainly C’s. … 2nd grade; Tommy did fine. Mainly C’s. … 3rd grade; Tommy did OK. During this time period his tics came and went. Sometimes very noticeable, other times not. They changed over the years from one to another but were always there. The blinking and eye rolling stayed consistent throughout. He once got into a fight on the bus because the kids were playing the “blinking game” with him.

Fourth grade this year proved to be the pivot point.

He has steadily gone downhill. The tics have not increased in severity; however, the co-morbid disorders seem to have really taken control this year. As I have found through my research, a delicate balance of sorts seems to exist between the physical manifestations, tics and the co-morbids. When one is high, the other is low, and vice versa. If one is suppressed, the other kicks in with more intensity. Behaviorally and academically, Tommy is not doing well to say the least.

During the course of the year, I was forced to re-evaluate my position and assess the situation anew.  His teacher and I are in constant e-mail communication. We, his guidance counselor, teacher and vice principal have all had numerous meetings. He currently has been given a reduced workload in comparison to the other children.

I am spending much of my time when I come home from work teaching 4th grade to him. He responds well to one-on-one training; however, long-term retention is minimal. The school has provided me with the entire 4th-grade curriculum in the form of 5 books so that I may tutor him when I can.

I am a project manager for a national retail contracting company and travel often times for projects that I oversee, so I can not always give him the time he requires. This creates gaps in his training which often times lead to me to starting over.

The first web site I found was “Health Unlocked” in the UK. I have been blogging and corresponding with persons with TS for a few weeks now. Wonderful, understanding, sometimes funny individuals. All eager to help by sharing there experiences and time with me. Much of what I currently know comes from them. We have become friends almost. I finally decided to go local and came up with this website and that of the New Jersey Center for Tourette Syndroome (NJCTS).

The point we are at currently is this: We, the family, have decided to make a very concentrated effort to get Tommy the best help we can provide for him. It is my sincere belief that this condition is something that Tommy is contending with as we all are. I have an appointment with his guidance counselor at the beginning of the month to begin developing an IEP for Tommy for 5th grade. We are currently waiting to receive his records from the CSH in TR and Hamilton.

We are still very much in the information gathering stages of this situation. We, of course, want to make the best and correct decisions for Tommy. I would very much like to speak to parents of children in this region that have already gone through obtaining an “OFFICIAL” diagnosis as to date we have not.

I am very interested in making an appointment with a “specialist” in the field for Tommy. However, I would like to state that medication and suppression techniques are not something we are interested in. Every one of the folks with TS I have spoken to have tried one form or another or combination of these with little or no impact other than side effects that sometimes rival the tics and co-morbids themselves. Rather, coping skills seem to be the choice of long-timers.

Does obtaining a visit to the “specialist” require a referral from the CSH, or is this something we do on our own ?? I have a ton of other questions. From what I have been told by persons with TS, many were self-diagnosed long before an official diagnosis was obtained.

One individual, Gordon (UK), told me he exhibited symptoms from an early age, 8, but did not receive his “official” diagnosis until age 39. While this seems to somewhat common, we can not wait. Tommy’s academic course and life course, for that matter, needs to be determined here and now. Any information and or assistance we may glean from NJCTS and it associates would be greatly appreciated.

Everything I have found to date is that education and awareness are the keys to coping with and handling this disorder properly.

One Comment

  1. Hello Tommy’s mom. My name is Josette. I have been going through the ticks and twitches all my life from age 5 or 6. Now that I’m 42 mine has gotten really bad. I have so many different ones that I do, I was good at covering them up, until now I can’t control them at all the constant sniffing, and twitching my neck I can’t control. I want to see a specialist to see what can be done , but I’m wondering if I will be put on medication that can maybe help calm the ticks down some. I really know what you are going through for your son, to help him in any way you can. I really look up to you for doing what you are doing for him and not giving up. I give my husband a high five of 13 years of marriage for understanding my situation. He didn’t understand what was going on in the beginning, but he looked over it when I told him my condition and stated that he will help me with whatever need I need. He had a heart transplant in 2009, and I told him do you remember these words ( I will help you in any way you need) and we did he is doing wonderful , but I am still struggling with the ticks and twitches and he helps me through it all. If you ever travel to New Orleans I would really love to meet you. if you are on facebook you can see pictures of me under josette chancellor.

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