What Many Moms of Kids with Disabilities Won’t Tell You

Written on May 8, 2014 at 5:27 pm , by

After coming to terms with her son’s disability, one woman reveals what many moms of kids with special needs won’t tell you. 

Author’s Note: This is a story about my journey as a mom, but I can’t tell it without relaying the private details of my son’s condition. That’s why in addition to writing this piece anonymously, I’ve also changed his name as well as the names of other family members in the article. 

At first they sounded like a cross between a robin’s chirp and a hiccup. Short bursts of noisy air that made other kids wonder if my son—whom I’ll call Aidan—had asthma. “Can he breathe okay?” they’d ask, their foreheads creased with concern.

Aidan was 6 years old and at the end of first grade when the symptoms started. If someone had told me I would spend years monitoring those noises—silently counting how many times they happened per minute (often more than 10), I would have said they were crazy. Nor would I have believed I’d get emails from teachers informing me Aidan’s squeaks and compulsive throat clearing made it hard for other students to concentrate. Or that at their peak, those sounds would morph into chin, neck and arm jerks so dramatic that people on the street—and in stores and on playgrounds—would glance his way and whisper.

Shortly after the outbursts began, his pediatrician explained that the sounds are called tics, and they tend to go away over time. She also said if the tics are both vocal and motor, occur many times a day and last over a year, they can be classified as Tourette syndrome. TS is a lifelong condition whose signs are usually noticed in early childhood, and may improve in the late teens and the 20s. She guessed Aidan’s were a phase. I wasn’t so sure.

For the next three years, Aidan’s tics came and went, so we never got a diagnosis. Then they escalated to include stepping back and forth over sidewalk cracks and brushing his fingertips against textured surfaces like a wicker chair. (As I’d later learn, kids with TS often have other neurological challenges, including varying degrees of ADHD and obsessive-compulsive disorder.)

 In the fall that he entered fifth grade, concerned emails from his teacher started almost immediately and his episodes began lasting longer. A specialist officially diagnosed him and I felt like my cherished expectations for him were instantly and cruelly revoked. He’s bright enough that I had assumed school would be his place to excel. Instead, he sometimes couldn’t even write his name because his shoulder was shaking so badly. I worried: Would he be bullied? Would he ever be able to play sports?

Aidan’s neurologist counseled a wait-and-see approach. Tics aren’t life threatening, after all, and Aidan doesn’t have coprolalia, the much-hyped but less common subset of TS where people blurt out swear words or other socially inappropriate comments. In some cases, medication can be the most effective treatment for TS, yet the neurologist wanted to be conservative and watch what happened to the tics over time.

My fears about Aidan’s daily life, however, made it impossible for me to take the long view. I coped by waking up in the middle of the night and weeping to my husband, James, that Aidan’s life was ruined. When he tried to reassure me by pointing out that our son had friends and was, except for the problems at school, happy, I just thought he was in denial. Once in a while, I’d confide my concerns about Aidan to friends, although I quickly noticed problems like mine weren’t typical book club banter. My friends were sympathetic, to be sure. But because my family’s issues were so different from normal family ups and downs, I felt alone in my troubles.

In my isolation I became jealous of families with “typical” children, silently getting angry when another mom complained about an incompetent hockey referee or a teacher who failed to place her child in the highest reading group. I’d always enjoyed hearing stories about my friends’ kids. Now they just felt like reminders that my own family was in crisis. Get a real problem, I thought.

I began trolling the Internet seeking help and meeting with any mom I knew whose child had any kind of neurological disorder. In addition to biofeedback and cognitive behavioral therapy, I signed Aidan up for acupuncture and had him work with a Chinese healer to learn Qigong, a mind-body practice geared toward improving energy flow through the body. Looking back on those days, I can see that I was searching for something—anything—to ease not Aidan’s anxiety, but mine.

At Aidan’s 11-year checkup—were we ever not at a doctor’s office?—the pediatrician was talking to him about his tics when I interrupted to show her how on top of it I was. She was checking his spine when I rattled off the treatments we were pursuing.  “Hmm,” she said, pulling out her stethoscope. “Maybe that’s too much.”

And it was. That’s when I realized that for months—maybe years—I’d been seeing Aidan only as a boy with Tourette syndrome, not as the kid who loved his cat, played tennis and wrote his own hip-hop lyrics. For the first time, I understood the message I was sending him with all those treatments: You are not okay with me.

When we were in the car, I asked Aidan which therapies he wanted to continue, suggesting that we keep cognitive behavioral therapy because I could tell it was helping him feel less anxious. He agreed and said he also wanted to continue with acupuncture. That decision not only eased our budget, it also freed up my time, which was another stressor on our family life. I realized that I’d wrung myself dry trying to fix Aidan. I had a job, a husband and two other children who also needed my attention. Aidan wasn’t perfect. And neither was his mother.

Realizing I didn’t need to be 100% responsible for Aidan’s life was a shocking relief, changing my relationship not only with my son but also with my friends. I started spending more time with moms of children who had challenges, and felt safe enough with them that I could laugh about my manic pursuits of therapies and 3 a.m. Internet forages for clues to Aidan’s future. Being honest with people I trust about my son and my fumbling attempts to help him let me cast aside the facade of the perfect mom. It allowed me to be cared about simply as a person.   

For three years, Aidan’s tics were controlled by medications that I would have been too scared to try if I’d listened to the Internet chatter instead of Aidan’s neurologist. Prescriptions are a big step for any family, so I’m glad we explored other options first. I am also amazed at how many moms toss around startlingly judgmental declarations about the evils of prescription drugs. In Aidan’s case, meds literally made it possible for him to start a new middle school as just another kid. Yes, he gained 15 pounds, complained of a dry mouth and had perpetually chapped lips, but experiencing less severe tics gave Aidan the confidence he needed to make new friends.

Today Aidan is in ninth grade and no longer takes medication to control his tics, though they sometimes bother him when he reads. (He’s learned to make adjustments.) Aidan’s on the debate team, plays hockey, gets good grades and, most important, has close friends, some of whom knew him during the worst of the tics. He has the high school life I’d always envisioned. The neurologist even dialed back Aidan’s diagnosis from Tourette syndrome to chronic tic disorder, although I’m convinced we were—and are—dealing with TS.

I can’t imagine I’ll ever like what this disorder means for Aidan, although I can tell that he’s a more empathetic person from having challenges. I’m also grateful for what my kid with special needs has taught me about myself. Looking back on my life before TS, I can see that I was pretty smug about my bright and sweet son, basking in the satisfaction of what I felt I’d created. These days I’m a humbler mom who doesn’t care as much as I used to about what my kids achieve. Instead, I simply want them to be happy.

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8 Comments

8 Responses to “What Many Moms of Kids with Disabilities Won’t Tell You”

  1. Dear Mother,
    In 5th grade I was diagnosed with TS. For years I wondered what was wrong with me. I wondered if I was weird, stupid or crazy. I wasn’t like other kids and I didn’t understand why. I had always been that way, different. But I wasn’t dropped as a child so what made me so weird? What put the target on my back for the other kids to pick on me? It didn’t help that I was overly sensitive.

    Once I finally knew what I had I could take a breath. There was something medically wrong with me. But it didn’t make me stupid or weird. It just made me different. Like a person who was deaf or in a wheel chair. Some of my best friends had disabilities, I thought they were awesome.

    Today my tics are rarely noticed. Even by those who know me really well. If I am under a lot of stress they bother me but 95% of the time I don’t even think about them.

    I just started a teaching career and I’m super excited for the opertunity to help kids who may be struggling themselves.

    Have TS was the biggest struggle and blessing in my life. I garentee I would not be in this career or stage in my life if it hadn’t been for my TS.

    Your son will be great. He will be more understanding and sympathetic of others. He will have a maturity that “normal” kids won’t develop, perhaps ever.

    As a side note; my TS was probably harder on my mother than it was on me. I am so greatful for her and I love her so much for the up and downs she went through with me.

  2. Dear Anonymous Mom –
    Disability? I can think of many, many disabilities, but TS is not one of them. My son was diagnosed with TS the summer before his 6th grade year. (He is 23 years old now). From the time of his diagnosis, we never treated him as a “disabled” child, nor would we allow anyone to treat him that way. It was, & still is, very important for him to be treated as a “normal” person. Yes, there were times that school was difficult for him. Kids can be cruel. However, my son went on to be part of a World Championship drum corps, & traveled the country performing & competing. My son still has tics, & we have been very fortunate that we were able to come into contact with the best doctor in CA who specializes in treating TS. My son has never asked “Why me?”. We have always made sure that he understands that TS does not define who he is; it’s just one part of the amazing person he has become. It seems to me that you couldn’t deal with not having the “perfect” child & the reality of your situation was more difficult for you to handle than for your son. Be grateful that he wasn’t diagnosed with a brain tumor, cancer, etc.

  3. My 15 year old has Asperger Syndrome and Tourettes. He wants me to say his name -John Hanson. We aren’t hiding who we are, why should we ? If you tell your story to make a difference then why the anonymity ? John makes terrible sounds in his throat, laughs uncontrollably, and jumps wild and free in public. It bothers me the way people point and laugh at him. It amazes me that even in Autism awareness month people don’t stop to think, geez, this kid must have some type of diagnosis, we should respect that. He does not wish to be placed on medication. He wonders why he needs medication to treat something that does not bother him for the sake of appearing normal to others. This world has fought for acceptance of race, sexual preference and religion choice yet has not come to understand mental differences. John has emerged in Pittsburgh as one of the best electronic music performers in the city. He cant tie his shoes but he can perform on stage. He is accepted in his field and hopes to become more known so he can show others to focus on their capabilities and not be concerned with labels or judgements. through his music John is finding a voice. We just lost a young beautiful friend from pulmonary embolism. thats a reason to be sad.Johns problem is he laughs and runs and jumps into the air while people stare. thats not his problem,it’s theirs.

  4. I too have a son with Tourette’s. He has never been a “special needs” kid. He is normal in every way in spite of it. He never felt different from other kids and had many friends. No one made fun of him because of his tics because he was just himself. We tried medicine for awhile but he decided he didn’t want to anymore. He tics constantly but I don’t remember anyone ever staring at him. If they did we didn’t notice. Give your child a gift and stop seeking help from outside sources after all you are not disabled and neither is your son.

  5. My 11 yr old has severe Tourette’s syndrome. I’m sorry but i do disagree that TS is a disability. My child as I said is on the severe end. Her tics cause her to punch her self, bite herself, she stops breathing, she passes out, becomes paralyzed, and her banshee screams for hours. These all cause her to need 24/7 supervision to keep her safe. She also has tons of mild tics. She was also dxd with FND (functional neurological disorder). Her tics are causing her brain to be in so much stress that it shuts off her ability to move or even feel her legs. The Leg issue just started in Feb. She was dx’d with TS when she was 6 yrs old. She is constantly ticcing.

    She doesnt let these tics stop her but it does affect her. She never knows one minute to the next if she will be able to continue with whatever is planned. She is 11 but must have 24/7 supervision. She cannot go to the playground without an adult. A disability is anything that leads a person from leading a normal life. So I’m sorry in this aspect my daughter is disabled. She knows she can do anything she puts her mind to doing but it will take her 100% more effort. That makes her wins that much better for her.

    She is on medicines that help with some of the tics but nothing takes away her tics. It is frustrating for her as she wants to be able to do all the things normal 11 yr olds do and she can’t always do that.

    She has been bullied to no end in school due to her tics. We ended up pulling her from school because she was being beat up and the school was doing nothing about it. WE now home school her.

  6. I read this with interest. I have a child with TS. His would fall into the moderate category. I find it strange that there is a percieved difference between alternative therapies and medications when it comes to TS management. Those who seek out alternatives are said to be hunting for a cure to fix their less than perfect children, while those who medicate are seen as managing the syndrome. I’m sorry, but either of those choruses are exactly the same. Medication is there to remove the symptoms or to tone down the co morbids, to make the child or adult appear more normal, or to be able to cope in day to day life. Alternative therapies aim is to do the same thing. The only reason one is seen as not accepting is guilt…because so many people see the alternatives as flaky and crazy and not worth the money you spend….and indeed some of them may be just that.

    Neither is better or worse than the other, each has it’s place. But don’t fool yourself into thinking that you accepted your son when you stopped the alternatives, no, you medicated your son, and you felt happy with the results of that. I bet you would have felt exactly the same way and written this exactly the same had the accupunture worked!

    True acceptance would be to do neither, to love him as he was. Or to actually accept that he needed the medicines in order for his life…and yours to be ok.

  7. My daughter has moderate TS, along with Anxiety, ADHD, OCD, a sleep disorder, and Sensory Processing Disorder. She absolutely requires special needs. The amount of time and effort these children require is a heavy burden indeed. Even though these are beautifully created wonderful human beings, they don’t fall into the ‘normal’ category. There is nothing normal about getting up to save my daughter from extreme night terrors (that sometimes induce vomiting) six or seven times in one night. Or having her break down in tears because the grocery store is so cold she will ‘freeze to death’. Or that her head jerks could make her fall off her bike, or run into something because she can’t see where she is walking. Normal is not taking 3-4 hours every evening trying to get through a simple homework assignment. Or having your child scream out in pain as their back tic is so severe they have arthritis yet cannot stop.
    Do not get me wrong, I am thankful every day she has TS and not a tumor or epilepsy. Her future outcome is bright. But these days are HARD, not just for me, but for my daughter. The battle she fights is an honorable one. I tell her all the time she is perfect just the way she is, but I would be lying to her and minimizing her battle if I told her she was just like everybody else. She is a warrior, she fights tough!!!! I am SO proud of her. I want to HONOR and recognize the work she puts in daily to overcome!!!! Anything we try to help her fight better is worth every effort.
    Thank you for this article. It is encouraging. TS is a difficult one to deal with, and I don’t think anyone really understands it unless they have dealt with it themselves. It is a lonely road to navigate indeed. To hear that your son is doing to well is so helpful. These young hard days of constant ‘coaching’ with my daughter are exausting, but to know that there is hope that she will overcome and learn to fight it herself are just what I needed to hear. Thank you for your honest words.

  8. For all of you who are giving this mom a hard time, I humbly ask you to stop it. So what if she’s anonymous. Her pain is her pain and it’s her journey. Would you say the same thing to this mother in person? No, you would wrap your arms around her and tell her that you, too, understand what it’s like to have a child with T.S.. I, for the record, understand her 100%. I struggled a VERY long time with my son’s T.S.. I KNOW it was about me more than him. I suppose that was my life journey and a lesson. My son is highly confident, smart and no worse for my vulnerability. I applaud this mom, high five her lovely piece, and ask her to write me if she needs a boost! Been there, done that, still struggle, but most of all, love the hell out of my son for who he is which, yup, is AMAZING.