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One of my BLOG friends (Mark) has asked me how it is Devon is misunderstood and I guess I could best describe how he is misunderstood by describing Tourettes Syndrome.

 

Tourette Syndrome is an inherited, neurological disorder characterized by repeated and involuntary body movements (tics) and uncontrollable vocal sounds. In a minority of cases, the vocalizations can include socially inappropriate words and phrases — called coprolalia. (Devon does have this too)  These outbursts are neither intentional nor purposeful. Involuntary symptoms can included eye blinking, repeated throat clearing or sniffing, arm thrusting, kicking movements, shoulder shrugging or jumping.  Often people are familiar with people who have tourettes who make strange noises like dog barking (Devon still does this sometimes) or shouting obscenities etc. 

 

I feel like he has been misunderstood his entire life.  It took me forever to get a diagnosis for him and even afterwards it seemed often some of the most important people in his life still didn’t understand.  (Teachers, etc.)  Saying they thought what he was doing was deliberate.

 

Devon’s physical tics have gotten much better with medication but his were so severe he often looked as if he was having a seizure, falling onto the floor body jerking.  I once remember someone coming over and putting hands on him and praying for him thinking he was having a seizure, but he was simply doing large body ticing because he was excited to be eating at Ryan’s buffet.  (It used to be his favorite.)  Often times something stimulating would cause him to tic.  This same visit he ticed and stuck an ice cream cone to his forehead…….his sister just looked over and popped it off.  We all laughed and went on eating.

 

Sometimes he would shriek with his voice and contort his body is a strange way.  Or at one point he felt he needed to jump from the top of the stairs to the bottom before he could say 3.2.1.  (Or he thought darts would hit him in his back.)

 

His ticing has changed over the years, plus he has multiple diagnosis, but currently he repeats almost everything I say some days (this grows old on Mom), he says “No” after everything I tell him to do, although he still does it, (ODD) he tics if something smells a certain way (he dislikes the smell of chocolate and magazines in particular) causing snorting sounds and face grimacing, and he still also does complex tics with his fingers and knuckles, cracking, bending, or cracking his back and neck, etc.  It is also rather common for people with TS to tic if they feel something really soft like cotton.  (I am still unable to buy him micro-fleece stuff because it really bothers him.)

 

People often assume because he does all of these strange noises and ticing that he is somehow not intelligent.  He actually does have a learning disability but I feel strongly that it is because of how Devon is or is not able to process information.  He has a hard time reading and writing because it will cause him to tic…blinking or hitting his head.  If something is read to him and he is interested he retains almost everything.  He scored gifted on some of his IQ testing and he is a total wiz at the play station.  People just often assume the worse……

 

Devon has learned how to cover up lots of the noises or sounds he makes….he will then either cough to cover it up or put the word he says somehow into a sentence.  It is hard for me to remember all the tics he does because it also often changes…sometimes from day to day.

 

There is a man with TS who eats at the Chinese restaurant near my job that has a wife who eats with him each time I see him……somehow this has brought me a huge sense of relief and helped me to remember that there will be some young lady out there one day who will be able to accept Devon exactly the way he is.  (Barking noises and all)

 

Laura
 
PS.  I imagine it is often hard for him when people stare and whisper about him, but he has always been really resilient.  For the most part he just ignores it.  I just want other kids and people to see past the noises and remember there is a young man in there, which is very much like them.  Open their eyes and see an animal loving, skateboarding, non-onion eating, play station wiz of a kid who asked that we all go out to eat at a Chinese food restaurant for Christmas.  (Maybe Christmas Eve guy…..) The girls and I just take what he does and says in stride.  It is a part of our life and often I guess we just don’t notice it.  I just wish more people could look past the noises and random stuff he says and see Devon…..for Devon.  They might actually see that he really is a neat kid. 
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8 Comments

  1. Yippee! An entry about Devon…my sentimental favorite of all your kids. =)Kelly

  2. Oh wow. Thanks so much for sharing that. It’s a subject I know next to nothing about, and when people like you blog in such a clear and rational way, it opens the eyes of people like me.Thanks also for your kind words on my blog 🙂 Nice to know not everyones a bit psycho out there! Have added a link to your space on mine, hope that’s okRegards,dobby

    • Silliest Schnauzer
    • Posted December 14, 2005 at 1:18 pm
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    • Reply

    I know one thing… what you wrote about your son is amazing… I find myself thinking about the abilities I have and the contrast is amazing…I am a little more grateful now for what I have and immediately think about what I can do to get a cure for TS… even though I am no doctor.Sorry, that’s just how my heart works. But I do know about the teasing, the looks, etc. Sort of anyways… because I was teased in High School. So I do know a little of what it is like… but nothing like what your son went through and is going through and will go through.Here’s to your son!MarkPS Thank you for opening up here, I am glad your son has you to be his mom!!!

  3. I am sorry I did not know Devon had TS…I will have to read up more on TS…that is what the world needs..to be more informed…maybe that way our kids wouldn’t get all the stares and smirks. Does he take meds to control his tics or is there a way he has learned to control them…?: ) Chris

  4. i dont have a blog, dont really now how i stumbled onto yours, but im glad i did. i have a son who is autistic,and some of the things he does,(repeats after the t.v,after me, after everything!, quiet for a while, then all the sudden he screeches,then when i say,nicholas! he’ll say,sorry,sorry).makes me think he may have a mild case of t.s. himself. i do not know much about it, but some of things things you descibed,sure sounded like my son! so i just wanted to say thank you for sharing. and by the by, we just got a boxer girl from a shelter, 3yrs old, bred to death then left to starve on the streets. she’s skinny as a rail, she tested a slight positive for heartworm,and you know what? we coulnt love this girl any more! what a great dog! very well trained,and soo much love to give. and you are right, they really do know you saved them:)hope the new year is great for you and your kids,and your fur kids!shannon

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