My oldest daughter was diagnosed with Tourette Syndrome two years ago at the age of eight. Her first tic, sniffing, began when she was six but at the time we had no idea it was a tic. We assumed she had a cold or allergies. Her constant sniffing was annoying at times so we were constantly getting after her to blow her nose or insisting she try to not do it so often. I feel bad about that now. We had no idea that she couldn’t help it. Then the tic just stopped one day and was forgotten. Several months later the eye blinking tic showed up. She was on a swim team at the time so I assumed the chlorine was bothering her eyes except her eyes weren’t red and she didn’t have any discomfort. In fact she was unaware that she was blinking excessively. I began to wonder if the blinking was a tic so I did what most parents of the 21st century do when they have medical concerns and googled childhood tics. I read that up to 18% of school age children have tics and having tics doesn’t necessarily lead to a Tourette Syndrome diagnosis. It was certainly in the back of my mind but I kept thinking, Not my child as if I could ward off bad Tourette spirits with my thoughts. Then the blinking tic vanished and I put it out of my mind altogether. I convinced myself that her tics were due to stress since our family was going through a crisis at the time.
Shortly after that Madeline started second grade and was struggling. Her teacher was rigid and had a low tolerance for her hyperactivity and impulsivity. She was having trouble grasping math concepts and getting her to do homework was a nightmare. Most homework nights ended with either a tantrum or me yelling. It was so frustrating. Many nights I cried myself to sleep not only because I felt bad about losing my temper but also because she was so disruptive to our home. She monopolized so much of my time and I felt resentful that she was taking that time away from my other children.
During this time of great stress was when an explosion of tics returned. We were watching a movie together in my bed when I noticed that she was repeatedly scrunching up her face. It took me by surprise and I asked if she was okay. She was embarrassed that I had noticed and explained that she has to do it to feel okay. Of course I told her it was okay and that I love her no matter what but inside I was screaming. This was not supposed to happen. I had prayed for the tics to stay away. I was so overwhelmed with a fourth pregnancy and dealing with Madeline’s intensity that I felt like I couldn’t take on anything more.
Later that night I hid behind the bedroom door where Madeline could not see me and watched my beautiful daughter repeatedly scrunch up her face and roll her eyes. And I cried. She’s a little girl. Life shouldn’t be this hard and all I could think about was how these tics were going to doom her to a life of ridicule.
Not my child.
The tics weren’t the only thing roaring its ugly head. Obsessive Compulsive Disorder and anxiety issues also made an entrance into Madeline’s world. She was so fearful of everything from going to bed at night to riding elevators. Disney characters, clowns, and Chuck E Cheese sent her running as if she was being chased by a masked man with a chainsaw. She sniffed everything and had a ritual of touching her forehead, cheeks, chin, chest, and nose with her food before she could eat it. She did this with every bite and it was very noticeable. Her siblings, friends, and some adults would question her about it. She would just reply that she didn’t know why she does it but that she has to do it or she feels icky.
Not my child.
She was never tic free over the next few months but her tics would change. With every tic that disappeared I held my breath in anticipation for the next one. I was so fearful that the next tic would cause her to recite curse words or harm herself. Thankfully cursing has not happened but she has had some tics that cause her harm and others that are socially unacceptable. She had a motor tic of jumping and kicking her bottom with her heels. I didn’t realize how hard she was kicking herself until I saw the circle bruises from her heels on her bottom. A lot of her tics involve sniffing or rubbing objects on her nose. We wouldn’t let her drink anything from a can out of fear that she would cut her nose since she had to rub her nose on the opening prior to every sip. The tic I had the most trouble with was when she would cough up whatever was in her throat and spit it out. I avoided taking her anywhere until that tic disappeared. Thankfully it was a short lived one.
That winter Madeline had four strep throat infections within five months. Although excessive, it was not unusual for Madeline to have frequent bouts of strep. According to Dr. Google there is a theory that tics can be triggered by strep throat infections. This gave me hope that maybe her tics were triggered by bacteria and not inherited from me. I come from a long line of mental illness and prior to meeting my husband I swore off having children because I feared I would pass on a neurobiological condition. There I was with four children and my firstborn exhibiting signs of my worst fear. I was not coping well.
Not my child.
Antibiotics for the strep throat infections didn’t seem to have any effect on her tics but we did notice a marked improvement after her tonsillectomy. Or we just got used to her tics. Maybe we saw what we wanted to see.
Our pediatrician was hesitant to diagnose Tourettes or ADHD so he referred us to a pediatric neurologist who gave us our official diagnosis. Turns out it wasn’t the crushing blow that I expected. We had been living with these conditions for several years and it had been okay. Sure, some days are really difficult but Madeline’s quirkiness is part of who she is. It really isn’t that hard to look past her tics and see the sweet, loving little girl she is.
Yes, my child.
I had no idea tics were so common. Now that you mention it, I remember going through a phase when I was a child of continually flaring my nostrils. Lasted for about 2 years. Strange, I hadn’t thought about that for years.
Thank goodness you finally got a diagnosis for Madeline. It might not change her behaviour, but at least you no longer have to beat yourself up for feeling it’s somthing you did.
I love, love, love having you share your daughter with us. I am learning so many things each time you post.
“Later that night I hid behind the bedroom door where Madeline could not see me and watched my beautiful daughter repeatedly scrunch up her face and roll her eyes. And I cried. She’s a little girl. Life shouldn’t be this hard and all I could think about was how these tics were going to doom her to a life of ridicule.”
That is intense. I have done this as well with M but for other reasons. It is so hard to watch your child struggle. I had a counselor repeatedly tell me, “It is all she knows Marla. Being sick every day is probably not that bad to her since it has been her constant reality.” Yeah, well…that certainly does not make a parent feel any better.
Lovely post.
Kristie–
This really was lovely–those thoughts of watching our children go through something hard–not being perfect. It’s so hard to be a parent, but a loving mom is what every child needs, and I can tell that Madeline has one.
It is so difficult not to blame ourselves when our children struggle – we’re the parent, we’re suppose to make it all better. And we do through our love.
Your love for Madeline shines through every word you write. You are both blessed to have each other.
I just wanted to give you some encouragement and tell you that I have a 26 year old sister with tourettes and she is a successful art teacher in NYC.
She has found that acupuncture really helps to clam her tics a bit.
What a beautiful post! Thank you for sharing your story.
xo
Thank you for sharing! The part about hiding behind a door and watching your girl just broke my heart. I wish you well in this journey!
Lipitor….
Lipitor side effects. Lipitor….
My cousin has Tourettes…and to be honest, I didn’t notice until 3rd grade. [Or I don't remember noticing at least.] Granted, I didnt see him often bc of how far away he lived but still. He’s a journalist and he does quite well. Only tic is that about ever 15-30 minutes, his eyes get large and his head dips down and everything goes back to normal. Also, it tends to get better and less frequent with age.
Also, my friend’s sister has Tourettes and some medication has helped her dramatically, though, I never noticed when she WASN’T on the meds. May I just wasn’t paying attention or I was used to it with my cousin.
My daughter just turned 5yrs old. Like yourself, my mother’s side the family (from both her parents) have a history of mental illnesses. My daughter’s first tic was hard blinking. It lasted for a while and then disappeared. Like you, I thought something was wrong with her eyes but didn’t overly concern myself because she wasn’t complaining. Over the last few months, even now, she is constantly, constantly sniffing and blowing air out her nose. I’ve asked her why she does this and she replys, “I don’t know.” I’ve asked her if something in her nose or throat is bothering her – she replies, “No.” I’ve spoken to our family Dr about this and she said it could be allergies as my daughter is at a high risk for such, or perhaps it is stress related. She will be staring Sr. Kindergarden this Sept and going full days (I’m in Ontario, Canada). I’m not sure what’s going on but it is truly, truly annoying. We try not to call attention to it but will sometimes as her if she can TRY to keep herself from doing it. She says she will try and instead covers her nostrils with her two fingers and sniff or blows. Our Dr. said to make an appt if it continues into Sept or Oct when allergy season is done. I’m afraid of what the teacher will say …. and how the other students will treat her if this doesn’t stop by Sept 8th when the first day rolls around.
My friend’s son was just diagnosed with Tourette’s. I’m not exactly sure what his symptoms are but I do know that his is VERY hyper and doesn’t really grasp the concept of his wrong-doings no matter how simply explained to him or how many times (i.e. he’ll hit our dog on the head over and over no matter how many times he’s told to stop, he’ll hurt the dog – thank goodness our Riley is a child-loving Boxer and simply lays there & puts up with it).
Anyway, thank you for your post. I’ve been worrying and still am until this stops. However, while I am aware that tics can come & go with children, your post still made me feel better. Thanks.
Julie in Niagara Falls, Canada
My daughter has done each and every one of these tics since she was 3 from clearing her throat, to blinking hard, smelling her fingers to making a quick “um” sound and now back to blinking at age 8. We have never addressed any of these but instead have told her everyone has idiosyncrisies that we all have to learn to accept in one another. I pull my hair behind my ear everytime I feel nervous or uncomfortable, my friend chews her nails and my mom excessively talks but God made us all different and that’s ok. She is now an 8 year old who is comfortable in her own skin and has incredible confidence that comes from the Lord. Just today a little girl told my daugther she blinked funny and my daughter simple said kindly “would you mind not saying mean things to me” and just walked the other way. I was one proud mamma. We live in a world of critical thinking and I am glad my daughter will be one less person in the world with that type of mindset. We see her nervous tic as a blessing it humbles her to learn to accept people for who they are and not try to change them. When we get to heaven thats when we get to be perfect. Press on towards the goal.
SMac
This was a beautiful article, which I came across as I deal with similar issues with my beautiful five year old daughter. I am early into figuring this out, but I loved the love in your writing.
My husband just sent me your story as we are having a problem with our son constantly sniffing his hands! It truly made me cry as we are not sure what is going on with him, but I could truly relate to your story. We have never noticed anything else, but have become very frustrated with this new physical ritual. It all started with excessive hand washing at school. His teacher told him that there are bad germs everywhere and if he touches his face, nose, mouth, behind, or his hands are dirty he needs to wash his hands. This turned into about 10 to 15 hand washings a day at school. His and many other kids hands got raw and cracked and he started to hold them up like a doctor, and did not want to touch anything. He often times tries to pick things up with his elbows, or push them from room to room with his feet. We are constantly reminding him to open up his hands and use them. Then there is the constant hand sniffing. It seems like he’s doing it several times a minute, as well as sniffing many objects. He is 5 1/2, but when he was youn ger had many colds with constant ear infections, and one case of strep. He also had two sets of ear tubes, and his adenoids removed. we are off to see the doctor this week, as this has been going on for about 3 months now. Hope to have some answers this week. I am so worried! I don’t want to jump to conclusions and put him on any medications that may make things worse? Any wisdom you can share?
Laura Coughlin