- Diseases, Disorders & Conditions
The Difficult Journey to an Answer
My son is my life. He is my most cherished accomplishment. When I first had Dominic, I can remember being told by a co-worker that I was the happiest mother she had ever seen. After having three miscarriages prior to him, why wouldn't I be? He is my miracle—a perfectly beautiful, little blessing that I love, nurture, and educate.
Dominic is a very intelligent boy. Ever since he came out of the womb with his eyes wide open staring at everything and taking in all the sights and sounds around him, this has been clear. However, my son has always been a bit different. I can't say that the first indication of an issue with Dominic was when he was about four and told me, “I don't like the way I look. I wish I looked like Trevor,” who was another child in his preschool class at his daycare. A four year-old with self-esteem issues? I know this isn't normal. I've worked with children in various settings since I was eleven and had never come across a child so young express feelings of self-consciousness.
There were other signs even prior to this. He was never like most boys his age who would simply run off and play without a thought or worry. Oh no! Ever since Dominic was walking and running, he would adamantly refuse to try anything new that seemed the least bit scary at playgrounds and bounce houses. He continues to have a negative first reaction to anything in which he feels the least bit anxious or fearful about. At eight, I still have a hard time getting him to ride his bike without his training wheels! Dominic's fears and phobias have always been evident and unreasonable. To this day, my son will have an anxiety attack when trying to clip his nails or if he comes within twenty feet of a dog.
Dominic's tantrums were not just your every day run of the mill fits that most children have. They were intense, emotional meltdowns in which he couldn't calm himself down from. He would scream and cry as if he were being tortured. And his sensory issues were a problem since birth! He's always been easily startled, and his gag reflex with certain tastes and textures of foods was apparent since he was an infant. Dominic has been so particular about what he wears that he has been dressing himself since he was two. Over-stimulation continues to be a problem in crowded and noisy environments.
Social Skills and Peer Problems
When Dominic began having some problems adjusting and fitting in at the day care center in his preschool years, his father and I began seeking more support for him. This was in addition to the speech he had already received and graduated from that was provided by early intervention services. It was more than just sensory issues and intense meltdowns. If he was given a consequence for a behavior, he would often ask, “Do you still love me?” What? This was startling! He didn't think we loved him just because he was in trouble? He equated someone being mad or upset about his behavior with not loving him. I simply couldn't believe it! He was very confused about emotions and had a difficult time expressing how he was feeling. Sad and mad meant pretty much the same thing to him.
There were other problems as well. He was the most outgoing and social child you could ever meet. Dominic could make friends with anyone at any age, and he would immediately invite that person to live with him. However, he would have more difficulty maintaining his friendships at daycare and in social play. It was such a contradiction. He could easily be thrown into terrible mood swings and meltdowns that were triggered by what seemed to everyone else as trivial. At times Dominic would be a bit aggressive toward his peers, again over minor issues. Thankfully these times were infrequent, but he could never explain why he did those things. When asked, he would always reply by saying, “I don't know.” And it was clear he really didn't know. But that's so hard to believe because he knows right from wrong. Maintaining friendships and reading the social cues of others continues to be his struggle today.
Every time I took Dominic to the pediatrician for these issues, there didn't seem to be much concern. His pediatrician recommended a parenting book by Mary Sheedy Kurcinka called Raising Your Spirited Child. The book was helpful in the short-term since I was able to identify areas in which my son's temperament may have been causing some conflict with others, including his father and I. I was able to come up with strategies to work with his temperament and to give him strategies to self-soothe. But what about his low self-concept? This wasn't normal. I wanted to be able to help Dominic in any way I could. I wanted him to feel good about who he was. I knew there was more to it than just his temperament and my child being “spirited.”
Once he reached school-age, especially into first and second grade, things became worse and worse. Dominic began to stutter around the age of four and received speech for fluency in kindergarten. This was a source for more self-consciousness for him. His first year of school in kindergarten was his best, and this was due to the outstanding efforts of his amazing teacher Mr. Waldo. There were very little problems that year. I will forever be grateful to Mr. Waldo for giving Dominic a superb experience for his first year of school.
First and second grade were an entirely different story. This is when the stuttering became even worse, the tics began to surface, and Dominic's self-esteem went even further down the toilet. He began to really dislike school and this was devastating to me since he had always loved learning. He felt very disliked and blamed for everything by his first and second grade teacher who taught him for both grades. Dominic's social skills seemed to become worse rather than better. He would get into trouble for a lot of little things, and he seemed to become more and more disorganized with his homework, book bag, and toys at home. He also began having issues hearing when there was background noise such as the radio, TV, or a noisy environment. This had a negative impact on Dominic in the classroom. Could this be the answer? When I had his hearing screened at the pediatrician's office, there were no issues to be found. Nope. Not the “answer” I was looking for.
Allergies or Something Else?
During Dominic's first grade year, his father and I separated. It was an emotional time for us all, but his father and I were adamant about putting him first to minimize the negative impact it could have on him. We got him counseling. This seemed to help him cope with the separation and other inevitable changes like his father and I dating other people. His “tics” were becoming noticeable at this point. Dominic would sniff and cough a lot. We simply assumed it was allergies. So his dad and I would give him allergy medicine to help and tell him to blow his nose. The allergy medicine did nothing to alleviate the symptoms, and he hated having to blow his nose since there was nothing to blow.
It was during Dominic's second grade year that the eye blinking began. He would blink his eyes very tightly. It would be to the point that it would make his eyes really hurt and sometimes give him a headache. The blinking would come and go. Sometimes it would be really noticeable while other times he would barely do it at all. His dad and I thought he was having some eye problems or that it was related to allergies. Another possible thought I had was that he was trying to substitute the eye blinking for his stuttering since he was so self-conscious about the stuttering. Dominic hated when others commented on his stuttering or tried to help him out. The eye blinking became so bad one evening, his father took him to after hours to get him checked out. I met them there. There was really nothing the doctors could do except just recommend eye drops.
When you are desperate to find an answer or to understand what may be wrong, it's always there in the back of your mind no matter what you're doing. I was conducting research on the internet for a class when I stumbled across sensory processing disorder. I never really heard of it before and I wanted to see what it was so I checked it out. I looked at the check list of symptoms of sensory processing disorder and saw that Dominic had so many of them. I thought maybe this could be the answer! The more research I did, the more I found that it fit him. However, there is no separate diagnosis for sensory processing disorder. This would fall under an autism spectrum disorder. Seriously? Why? I know my son doesn't have autism, yet he suffers from so many of the issues of a sensory disorder. So why isn't sensory processing disorder a separate classification?
At the end of his second grade school year, I made an appointment with Kirch services through Strong Memorial Hospital at the suggestion of his counselor. This was to determine if Dominic may be on the autistic spectrum or have any other type of disability. His appointment was scheduled for early November of that year so I had to wait five months. It seemed like an eternity to wait! Apparently it could have been much worse since I was told others have had to wait over a year to get an appointment. Five months was much better than over a year to wait.
After the eye blinking came a head nod. It was combined with the blinking. Dominic would close his eyes tightly to blink, sometimes rolling his eyes into the back of his head, and then violently jerk his head forward and down rapidly. This was definitely a cause of concern for us. His father spoke with me one evening when he was picking him up about the possibility of Tourette Syndrome. This was something I had never considered before until now. His “tics” were always something that could be passed off as an allergy so we never even thought of them as tics. That was until now. This new tic looked painful. And it was, according to Dominic, although he didn't even realize he was doing it. I couldn't wait for his appointment at Kirch! I needed answers!
School Testing and a 504 Plan
Although many parents may be afraid of labeling their child, this is not something I am bothered by. My main concern is that my son is given the best possible support so he will be successful and reach his full potential. This has to be based on his individual needs. Therefore, at the end of Dominic's second grade school year, I requested testing for him from his school. This would begin at the start of the next school year. I especially wanted him to have social skills training and counseling in school to help with his peer relations as well as his self-esteem and self-concept. His academics were never a concern so I knew he probably wouldn't qualify for an IEP (Individualized Education Plan), but he could receive a 504 Plan that would provide him with specific services to help him be successful. Dominic had already been diagnosed with anxiety by his counselor/psychologist and this alone could get him a 504 Plan specifically for test accommodations as well as other support services.
I also went to the principal and asked for special consideration in placing Dominic for his third and fourth grade years since his district loops. I did not want a repeat of his first and second grade years where he and his teacher didn't work well together. My son doesn't have a difficult time bonding with adults, however, he wasn't particularly fond of that teacher. I'm sure issues surrounding this negatively impacted his outlook on school as well as himself as a learner.
Dominic's third grade year started out on a much more positive note! He reported really liking his teacher, and so far she has been incredibly supportive and understanding. Testing was completed in October by the school. As expected my son was doing well academically. However, there were some areas of concern, especially social-emotional. Dominic was experiencing depression and anxiety surrounding his self-concept and how he feels others view him, especially his peers. Signs of depression! My eight year-old is experiencing depression! How much worse can it get? He would have trouble in school during social situations with his peers. He would get easily frustrated with them and often yell at them. He frequently needed many reminders to stay on task and follow directions. It was also difficult for him not to call out or for him to control what came out of his mouth. The information from his evaluation was sent to Kirch to help with a diagnosis.
The wait to take him to Kirch seemed like forever. Dominic's behavior at home was also getting worse. Homework was a nightmare. He would get so easily frustrated even though he knew what he was doing. He would have frequent meltdowns. Getting him to do anything was like pulling teeth. He always had to argue and have the last word. Everything was a big deal—picking up his toys, tying his shoes, brushing his teeth, you name it! But then there were times that Dominic was absolutely wonderful, relaxed and easygoing. My boyfriend and I would be able to joke around with him, and he would be having the time of his life. Other times, he was so touchy you couldn't even look at him much less laugh at a funny thing he might have said without hearing, “Stop looking at me!” or “Why are you laughing at me?” My son is such a funny and clever kid, the things he comes up with are hilarious. It absolutely kills me that he is so self-conscious that he questions why we would laugh at something he says.
Finally, An Answer!
I was extremely relieved when the day of the Kirch appointment arrived. However, I was also on edge.I can remember sitting in the waiting room with Dominic. I just smiled down at him and held his hand. He gave me a nervous little smile back. We had talked a little on the car ride there about why we were coming to this appointment. It was to figure out how to help him with some of the things he had been experiencing and to figure out what it could be.
In the waiting room, Dominic's tics were barely even noticeable. Once we moved to the exam room, he started feeling more anxious and the tics became more frequent—the eye blinking, the head nod, the sniffs, the coughs. I spoke with the doctor about my concerns first. Then she turned to Dominic and said, “Do you know why you're here?” He replied by saying, “Yes, but I can't remember what it's called.” After that my little social butterfly kicked me out of the room to speak and interact alone with the doctor. I was brought back into the room not too much later. The doctor looked at me and said, “Well the good news is Dominic doesn't have autism.” That was something I already knew and told her as much. She went over how he makes eye contact, can see things from other people's perspective, and went into what she had done with him while I was not in the room.
Then she dropped the bombshell. “Your son has Tourette Syndrome and ADHD.” Okay, I know all about ADHD and its symptoms. Being a teacher has given me many experiences with the disorder. I can see some of the impulsiveness and hyperactivity in my son. However, it isn't severe and doesn't affect his academics. Tourette Syndrome is another story completely. The only experience I have ever had with TS is having a next door neighbor with the disorder as I grew up. His was quite severe where he would shout out obscenities (corprolalia) and was accompanied by OCD and anxiety. Dominic didn't have corprolalia.
I already knew that Dominic suffered from anxiety. So now he also had a diagnosis of ADHD and Tourette Syndrome as well. So what exactly does having Tourette Syndrome entail? The answer: It's different for everyone except having at least two motor tics and one vocal tic that has lasted for at least a year. The tics can be treated with medication, but some tic medication can make the symptoms of ADHD worse. So the medication treatment for the tics has to be carefully considered for those who have both ADHD and Tourette Syndrome. But does this take into account my son's anxiety as well? How about my feelings that Dominic may have some OCD tendencies as well. The complexities of it all are astounding and so hard to separate and figure out it makes me want to scream, cry, and have a meltdown of my own!
Seeing Dominic slump in his seat and the defeated expression on his face when he heard the news broke my heart. The doctor and I did our best to explain it was a good thing he didn't have autism and that having a diagnosis of TS wasn't so bad. The doctor told him how many people have TS and referred specifically to a doctor with the disorder that she worked with at Strong who had a snorting tic. That seemed to perk him up a bit.
First Day of Third Grade
Timing is Everything!
Finally receiving a diagnosis was bittersweet. To at long last get a name for what has made my son seem “different” from his peers was a relief, but that diagnosis is one that is uncommon and carries with it a very negative perception and connotation. When one hears the term “Tourette Syndrome,” the shouting of curse words come to mind. This is what the media has sensationalized about this disorder. Very few people actually know anything about TS. Even most educators have very limited experience with or knowledge of this disorder. Therefore, throughout Dominic's education, his teachers and school will most likely be ill-equipped in meeting his unique needs. This is where I come in!
It seems that I am unable to learn enough about this complex disorder. It affects everyone differently, and many individuals, like my son, suffer from more than just TS which further complicates the symptoms and their lives. It's devastating how this disorder has already negatively impacted Dominic's self-perception. I often feel as if I am in some way to blame for this. If I could have known earlier would I have been better equipped to deal with so many of the issues his father and I had to deal with through his earlier years because of the symptoms of his disorder? Could I have prevented or at least lessened the negative impact it's had on his self-image and self-esteem? I don't know. All I know for certain is Dominic has yet to accept or feel it's okay for him to have Tourette Syndrome. He's very ashamed and doesn't want anyone else to know. He doesn't like who he is and learning he has Tourette Syndrome didn't help him as it has helped me in better understanding him, his behavior, and his thought processes. He won't even let me talk to him about anything relating to Tourette Syndrome—at all. Every time I try, he immediately says, “I don't want to hear it” or “I don't want to talk about it” as he gets visibly upset and frustrated.
By the time a diagnosis was finally determined, Dominic's social and peer development have already been hampered, and his self-esteem and self-concept are damaged. He has been blamed for so many problems that were out of his control that he has started to believe he is a bad person. Because it has taken so long for the professionals to understand what was actually going on with this complex child, he has already begun making statements such as “I hate myself,” “Nobody likes me,” and “I wish I could just be like everyone else. I don't fit in.” It is absolutely devastating to hear your eight-year-old tell you this.
On the positive side, I am thankful that Dominic is still young enough that he may overcome all the negative perceptions he has of himself. This has to start with the negative perceptions people and society have about those who suffer from a disability. Not just the visible handicaps that are easy to identify and empathize with, but those mental and neurological disorders that people tend to attach a negative connotation to. This has been especially true for Tourette Syndrome.
It's not the fact that Dominic has this disorder that bothers me. It's the fact that he's already self-conscious about himself and the fact that he has it. He has known for a very long time that he's different than others, especially his peers. I have known it too. But is this a bad thing? Absolutely not!! It's a great thing in my opinion and it makes my son special and more extraordinary than the average person. And extraordinary people are the ones who make a difference in the world. With that said, it has become my mission to not only educate myself about this unique and very complicated disorder, but to also disseminate that knowledge to those who work with him and to the world at large. With the spread of this knowledge, it is my hope that Dominic will one day be able to accept himself, Tourette Syndrome and all, for the wonderful, intelligent, clever, funny, handsome, loving person that he is.
A Special Thanks
Thank you to those who have been a support to Dominic and I over the years! It means the world.
Thank you to Kathy Giordano for giving me the strength to put myself out there and advocate for my son and those with Tourette Syndrome. I really enjoyed the book you and your son wrote, A Family’s Quest for Rhythm, Living with Tourette, ADD, OCD and Challenging Behaviors.