Stoney Creek mom's online plea for understanding goes viral
A Stoney Creek woman's Kijiji post about her teenage son's Tourettes syndrome has gone viral.
Sophie Martineau says her 16-year-old son was chastised for making noise during a screening of Beauty and the Beast.
In the post, she says her son Joshua thought he would be able to control the involuntary sounds caused by the condition.
She says what moviegoers don't know is that her son ``hates the noises more than you do.''
In a new postscript to the Kijiji post, she thanked the people who have sent her messages of support.
Theatre owner Cineplex has also reached out and offered Josh a free birthday party and private movie screening.
Here is the post:
Tonight my family saw Beauty and the beast in 3D in upper Stoney Creek...a movie about seeing past the outer shell to what's inside and not judging people on their appearance alone etc..(oh the irony ) . If you were there you likely heard a lot of random noises , lip smacking sounds ,raspberry sounds and or kissy sounds durring the movie. You may have also heard a few people shushing the boy making the sounds assuming it was an unruly child acting up. That was my child. What you don't know is that my son felt worse than anyone about the noises. Today was my son's 16th birthday .My son was born with Kabuki syndrome a rare genetic disorder that can cause multiple issues physically medically developmentally etc. I have 1700 pages of medical records and diagnosis under my bed from his medical history. It makes him look and sound much younger than he is but he has a huge heart. He has had 14 surgeries ( some life saving) and he needs at least 2 more. ..may be way more than that. Kabuki syndrome comes with a lot of problems ..some medical some behavioural some developmental. One of my son's issues is Tourettes syndrome. His brain makes him say and do things he has absolutely no control over. What's worse is that he can't take the medications to treat it because they cause extremely severe side effects for him . Tourettes can come and go , wax and wane and for some people tourettes can gradually dissappear with puberty. We thought that was the case for our son as his tics had almost completely vanished . His favourite thing in the whole world...one of the only things he enjoys is movies and movie theatres. Today he turned 16 ..a mile stone ...and the only thing he wanted to do to celebrate was see Beauty and the Beast with his parents and sister. To our surprise Tourettes reared it's head after being dormant for quite a while with a few small tics and people around us assumed it was behaviour and shushed him. I don't blame them for that. How could they know right? But if you were in that theatre and possibly even one of the people who shushed him...what you don't know is that he hates the noises more than you do . He hates that he can't control it. What you didn't know is that he hadn't ticked in a long time so he thought it was safe to go see a movie . What you didn't know is that the best way to make a tourettes trigger go away is to ignore the tics but correcting a tic make the brain grab hold and make the sufferer tic even more. Telling someone with tourettes to stop a tic makes their tourettes mechanism in the brain go on fast forward repeat of that tic so it creates the opposite effect of what you are asking or telling them to do. THEY CAN'T HELP IT. it isn't behaviour. Telling them to stop ticking is as effective as telling an epileptic to stop having and seizure. The brain won't cooperate no matter how much of an inconvenience the tics are . I sat there in that theater with my son tonight knowing he was embarrassed on his birthday. I sat there listening to the shushing knowing that if that if we had gotten up and left it would reinforce his tics more and make it worse for my son because that is how tourettes works in the brain . Ignoring it is the only hope of improvement . I sat there in the theatre trying to redirect my son and distract him from his tics descretely while he told me sorry mummy over and over again . I spoke up and told you all in that theatre that he had tourettes and couldnt help it and most of you stopped shushing but instead some of you kept staring which also reinforced the tics . Some of you huffed under your breath which also made his tics worse. He heard your huffs and saw your stares . I don't blame anyone in that theatre but I do hope to educate you so that the next time you hear random noises in a theatre or anywhere for that matter that you remember our story and you take a moment before staring or shushing and think that it could be worse. It could be YOU or YOUR Child who has no control of what their brain makes their body do. My son just wanted to see a movie on his 16th birthday. Over all he had had a good day but because of his struggle with tourettes tonight his last words before bed were " I hate myself" so before you judge him or me or my family for sitting though all the movie with him making all those random noises... be thankful that your brain doesn't do that to you. Over all my son does'nt hate himself. He knows he has value as a precious child of God but that he even thinks that sometimes is heart breaking .We apologize for disrupting the movie. We didn't know his tics would start up again tonight of all nights. We really did feel bad ...my son most of all. ..but I will never ever be embarrassed by my son. He's the bravest person I know and if you knew anything about how the tourettes brain works. and about my son's whole life struggle ..ignoring the tics and staying for the whole movie was our best option. For those who chose to ignore it and not comment or shush my son..... THANK YOU!
I am sitting here overcome with emotion and gratitude at the outpouring of love and support for my son and my family . My phone won't stop dinging and alerting me of all the messages of support to my ad. I never expected it to go viral. I merely wanted to spread awareness and foster more kindness towards people who struggle with differences and disability. God gave us a purpose in this. I am glad our message is being shared to help more people know what kids like my son face. Thank you for all the kindness. The first reply I got to this was a really nasty one but only one..ok. ...now two nasty replies . Every other reply has been so full of love. I can't possibly respond to every single message but I do read every one. THANK YOU. I am reminded of the goodess in humanity.
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