“Alice, Alice, who the F##k is Alice!?”
For the last few years we have been dealing with Tics. These are repeated involuntary movements or noises often without control. For example during a conversation or a TV programme, my son will suddenly shriek, squeak or shout a random word .Despite what some people think, they are not always swear words, but they can be (more on that later!)
Tics often co exist with autism. Normally they come and go and can vary between motor and vocal. My son has had the same motor and vocal tics now consistently for over two years, which means we are now looking at a potential diagnosis of Tourette’s, which can also co exist with Autism.
So my question today is how do i know if this is Autism Tics or Tourette’s? I am getting support and we are working towards answers, but like anything with Special Educational Needs, it’s not an easy or quick process.
Sensory Processing Disorder is a condition under the same umbrella as Autism and Tourette’s and there are some crossovers. My son is a Sensory Seeker, which means he seeks out sensory input across his senses of sight, smell, taste ,touch and hearing. Sensory seekers are often quite active and need a lot of physical activities and sensory aids. His new school have been amazing in recognising this and providing him with access to sensory therapy and resources. I will talk about this in another blog post.
One day I asked my son about his tics. I asked him if they control him or does he control them, and he told me that they control him and it feels like an itch inside his body and after the tic he is relaxed.
He also informed me the other day, quite randomly, that he is allowed to swear because he has hormones now! .
It’s difficult to describe to people what its like. One example is this morning while he was putting on his shoes ready for school I could hear him talking to himself, “I,ll wait for mummy, then we’ll go’”,this was followed by a few random squeaks.
There isn’t a minute that goes by where he isn’t making some sort of noise or twitchy movement. While watching TV, playing on his iPad, in the shower, even during a focused activity or trying to sleep, he will squeak intermittently and say random words out of context. It’s interesting when trying to make a bill payment using the automatic voice recognition!.
His nickname at home is dolphin.
Sometimes there will be a random “F##k off” or “B##ch”shouted out. There is often a lot of eye ball rolling or shoulder twitching happening and the tapping! I mean tapping on literally everything. For me, the tapping is a little like Chinese water torture. (Where is my bottle of Merlot?)
Honestly, i know this is hard for my son to deal with and i am doing everything i can to help him but its hard for me too. I am dealing with a constant sensory overload myself and it’s tiring. It can also be quite isolating. It’s difficult for people to understand because with tics (and autism) comes masking. He can suppress his tics to a degree around others but this is exhausting for him. He is able to fully express himself and his tics with the person he feels safest with ie me.
Aside from the challenges, i feel being a SEN mum is so rewarding and I wouldn’t change anything but it’s important to talk about the struggles so we don’t feel so alone. In my last post i talk about ways to relax and take time for ourselves.
The problem with the tics being so random is that they show up in some very inconvenient situations.
My son and i enjoy a trip to the cinema, but lately he has started getting quite animated during the movie and will often stand up and point his finger and shout obscenities at the villain on the screen.
Recently during a martial arts type film,the protagonist and villain got into a fight and my darling boy stands up and in a very, very loud voice shouts “He will f##k you up man!”.
Thankfully the lady sat next to us did see the funny side and smiled at us. What helped that day was that he was wearing his lanyard. Ah yes, the lanyard !
The sunflower lanyard, lets people know if you have a hidden disability such as Autism. I have only recently started using this on my son as I didn’t want to label him however, this lanyard has been our saviour and you can literally see the difference in how people respond. Without his lanyard I have had a lot of judgemental and disapproving looks ……. You know the kind ! But with the lanyard, we get sympathetic smiles and even lovely conversations with people. What a difference !!. The world is a much better place with the sunflower lanyard.
The other day we had some time before his soft play session so we decided to go to the coffee shop. Waiting in the queue, i can sense my boy is getting a bit restless and agitated at having to wait because he’s worried we will be late.
“Mummy why are there too many people? Why are they here ? “ I calmly explain to him that we need to wait. He responds by slamming his hand on the counter and shouting “It’s taking too bloody long, they are so slow in here!”.
This time he wasn’t wearing his lanyard and the barista was not impressed. I am not sure if we will go back there, (anyone found my bottle of merlot yet? ).
We often spend time in our local Turkish restaurant, which is owned by our friends. It’s a great night out and usually ends with a sing and a dance. This time my friend came with us and her son who is also on the spectrum and a close friend to my son . Watching the two of them dance and have fun together is so heart warming . It is also nice to see people dancing with them. Last time , when it had quietened down for a moment , my son decided to do a very loud rendition of the chorus of a very famous song by Smokie.
We had previously been singing the song together and most people were drunk, so it went down very well on this occasion and hey, he got the lyrics right!. But the problem is he now keeps saying this out randomly too. We will be in the middle of doing our food shop at Tescos and all of a sudden he will ask very loudly “Who the f##k is Alice!”
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