I started Our Disabled Life to spread awareness about childhood disabilities, educate people and normalize disabilities. I have shared every aspect of our journey with Annie to show people we are just like everyone else, we have challenges too they're just a little different.
Over the passed few years I knew something was up with Tanner and started digging to figure out how I could help him. I suspected ADHD for a while, the amount of energy that kid has is unreal. He has always had behavioral issues but they all seemed to be worse when he was unable to calm down. I have been given unsolicited parenting advice for as long as I can remember, "let him run it off" or my personal favorite "send him to my house for a few days and he'll start to behave."
Let me let you in on a little secret, Tanner is not a terrible kid who doesn't care about being in trouble and we're not lazy parents who choose not to discipline our child. Tanner's brain is not wired like yours or mine and just yelling at him, spanking him or putting him in time out does not work. I am not an anti-spanking parent but I choose not to spank Tanner because it is not effective, I spank him and it doesn't phase him- he cries for a few minutes but it doesn't change his behavior long term. We have talked to therapist, doctors and worked as a family to figure out how Tanner learns and how we can raise and discipline him in a way that works (and we're still trying to figure it out) Tanner's ADHD makes him extremely hyper all the time, and unlike a typical child how get hyper spurts and then crashes Tanners levels stay high. "Running his energy out" does the opposite, it revs him up. He just gets more hyper and more hyper until he is unable to bring himself back down. I try to watch and make sure when he is playing with other people that he is able to recognize when he is wrestling or engaging in horseplay when he reaches his limit, because bringing him back down can be extremely difficult.
Tanner got diagnosed with ADHD about a year ago and we have been exploring ways to raise him but I started to suspect that it was more than just ADHD. Shortly after being diagnosed Tanner started to develop tics. It went from one or two to constant tics very quickly. He would develop a tic, tic every 3-5 seconds all day for about two weeks before dropping the compulsion and starting over with a new type of tic. We took him to his pediatrician and suspected his ADHD medication had made his tics worse (he had tics before starting medication for ADHD). We started Tanner on a second medication for tics and they went away for a while but as we messed with the dosage of his Adderal his tics started to come back. We upped the dose of his tic medication and have been in the process of adjusting both meds to find his therapeutic dose. Most childhood tic disorders resolve themselves within a year but Tanner's did not and we were unable to get them to stop without medication intervention so we took Tanner to a pediatric neurologist where he was diagnosed with Tourette's Syndrome(TS)
When I was faced with the idea that Tanner might have TS I was heartbroken, I sat in my car and cried to myself all the way home. I was sad for Tanner- for the difficult journey he was just starting, how this would affect him at school, his social skills, the burden that this would put on him. I have myself until i got home to wallow in my sadness. I believe it is so important to do this, to let yourself grieve- it is not weak and it does not mean that you love your child less. I let myself grieve the life I thought Tanner would have and I haven't looked back. I researched what he would need and how to help him and not once since then have I been overwhelmed with sadness for Tanner.
Let me start off by saying TS is relatively common and only a small percentage of TS patients curse uncontrollably, 5-10%.
TS is a neurological disorder, not a behavioral condition. TS is a combination of multiple symptoms, that include but are not exclusively compulsive tics. To be diagnosed with TS you most exhibit both motor and verbal tics for more than one year. Children with TS can exhibit dysinhibition (difficulty inhibiting thoughts or activities), oppositional behaviors, immature behaviors, refusing supports and accommodations, rage, heightened fight or flight and use of inappropriate language. Students with TS may also have difficulties with auditory and visual processing, sensory integration, attention, reading, handwriting and social skills.
Tanner's TS effects him in multiple ways, it is more than just tics.
Tanner has both motor and verbal tics, some of them have included:
- Clicking noise
- Clearing throat
- Sniffing nose
- Stretching legs while walking
- Throwing arms out
Sometimes Tanner gets over stimulated and can't process what is going on, a lot of times that manifests with Tanner telling someone to shut up, stop, leave him alone or to just walk away. As a mom it is extremely hard for me to listen to him treat me this way but I know that he is not trying to be malicious, he needs silence to process thoughts and those words are the quickest way for him to communicate that. So I have to remind myself of that. Raising a child with TS has made me walk a fine line between helping him cope with how his brain works and making sure that I raise a well-adjusted human being.
One of the biggest realizations I have had raising Tanner is figuring out to not care what other people think about my parenting. I have to choose my battles, there are times that Tanner is throwing a fit in public and usually I choose to ignore him until he calms down and goes back to normal. I have seen people before talk about how to handle a child misbehaving in a store and I agree that with some children you can take them out of the store and parent them in private and put off going to the store until they decide to behave- but not all children work that way. If I abandoned my cart every time either of my children were misbehaving in public I would never get anything done. I have gotten stares and looks for letting my kid cry through Target or for letting Tanner lay on the bottom rack of the shopping cart (which he LOVES by the way, and who is it hurting?). I have learned to not care how other people think I should raise or discipline Tanner. They don't know him, I do.
TS is something that Tanner will have to live with for the rest of his life, he will likely learn to suppress his tics but it will be like having a constant itch he can't scratch. I will be going to IEP/504 meeting for both Annie and Tanner through school and will do my best to educate his school, teacher and class about Tourette Syndrome and I will make sure the know there is NOTHING wrong with him.
For more information on Tourette Syndrome visit www.tourette.org