I have grown accustomed to the funny looks and the finger pointing over the years as I wander happily through life with Tobi.
He was the most beautiful child, blonde hair, blue eyes and an ever so cute smile. And he has grown into a handsome, brown haired, often posed smile revealing his perfect teeth, his blue eyes a little darker now and often fixed in a stare, 6ft young man.
When we go out you can see all the girls look at him and start to whisper, giggling amongst themselves about the pretty lad that has just walked by. That pointing and giggling I can stand.
It is only when we stop and engage with other people that the stares and the finger pointing become something different. The stares of disbelief from adults he talks to who expect so much more. Finger pointing from strangers as Tobi starts to flap his arms, from the elbow, when he gets excited. The sneers from shop assistants when Tobi asks something ridiculously obvious about the products they are selling. And the way they spit their response to him in disgust and gossip about him and laugh with their colleagues as we leave the shop.
Tobi has always been quite tall for his age and I think this makes people expect more because they thought he was older. Once when he was about 3 I was in the supermarket with him and his sister (who was sat in the trolley trying to munch her way through the outer plastic to the bread inside). Tobi was rummaging around the fruit and veg, the trolley was positioned to try to trap him there as I tried my best to remember what groceries we needed and try to keep them in the trolley. Anyway, I had bent down for something as I stood up a potato flew past my face at eye level. Tobi had taken it upon himself to start playing. Just kids stuff, nothing to do with autism, illness or anything else for that matter.
I would like everyone to know that no people or potatoes were hurt during this incident. However, this woman with no children in sight, perfect hair and make-up and dressed immaculately sauntered up to me and sneeringly said, “Can’t you control that child?” To which I replied, “No. Do you want to try?” She harrumphed , said something else, span on her perfect heels and walked away to complain to the staff about the mad women with out of control kids in aisle 2.
This wasn’t a particularly bad experience and believe me there have been many. What this was, was the first time that I realised that I would be judged as a bad parent, by strangers, forever. Strangers who don’t understand that my 16 year old will flap his arms because he is happy we have bought ice cream. Will repeat himself, constantly, when he is worried about our lift not coming on time because he doesn’t understand the sentiment that “Things happen”. As I watch people stare at me and my 6ft, 16 year old, often toddler like, son. I always think “But for the grace of God”. It’s easy to point and stare if you have never been affected by mental health illness’ in your life, but they can hit anyone, at any time and more people should remember that.
It was only when the points and the stares started to make Tobi unhappy that I decided to change. To detract attention from him, I dyed my hair purple/pink/orange so people stared at me first and didn’t even give Tobi, the handsome blonde lad with his weird Mother, a second glance. I began to wear odd clothes so that the formal (inappropriate) way that Tobi chooses to dress didn’t draw strangers attention, they were too busy sneering at me, hehe.
I know I can’t be around to do this for Tobi for ever but until he is happy and settled in himself, with good friends around him that understand and like him for him, I will continue to be the mad purple haired witch with the good looking son.
At the end of the day they point and they stare and they don’t even really care. They haven’t gone home and held onto these memories for years like I have. The woman from the supermarket doesn’t sit all these years on and retell the story of the day she met me, because people just don’t care beyond the moment of the point and stare. It took me a long time to realise this but it is true. Am still trying to get this thinking through to the kids, maybe one day they will understand. Hope so.
Since the end of the summer holidays Tobi seems to be becoming more and more reclusive.
Yes he goes to college two and a half days a week, where he spends his lunch and break times in the library. Nothing wrong with that I hear you cry and normally I would agree but for Tobi it is a way of avoiding having to interact with other kids.
He doesn’t have any friends that he goes out with. His virtually friendships are all based on lies, so he doesn’t ever meet friends from the cyber world. He sometimes knocks about the village with the six, younger, village kids and that is the extent of his social life.
Just recently things seem to be going from bad to worse. Tobi is spending more and more time alone in his bedroom. He gets up on the days when he isn’t at college, has breakfast, wanders about for an hour then goes back upstairs. Comes down for his lunch then when he’s done, straight back upstairs. Comes down for tea, moans about having to shower, watches the soaps and then (you’ve got it) back upstairs to his room.
I check on him from time to time throughout the day but struggle to get conversation out of him. He spends most of his time stood in front of his window watching the world go by.
I know what you’re thinking, typical teenager spending time in a bedroom full of technology. Tobi’s isn’t though, he has a TV with no aerial so it can just be used to watch movies or play games on, which he doesn’t do anymore. He has no internet up there after we discovered a really unhealthy obsession with seriously nasty porn. The other possessions are his stereo radio (which is on day and night tuned to radio 2) and all his treasures.
I ask if he is lonely? No. I ask if he wants to go out? No. I ask if he wants to do anything together indoors? No. I know he won’t want friends round but I do ask occasionally. I’m at a loss and a bit worried. Is this normal?
He seems to be struggling at college. Don’t think he likes it much. And it definitely isn’t the course he thought it would be, which isn’t helping matters much. He cycles to college and gets a puncture every day (I think this is being done on purpose). We have offered him a lift but he doesn’t want one. And he won’t go on the bus because he is scared of buses. He has even stopped doing his car cleaning round in the village which he used to do religiously (ish). It seems his need to earn money has also gone out of the window.
The only club he wants to go to is the Youth Club which I run. As he is obsessive about cars I thought about buying him a banger to play in and try to do up. My only fear is that he will want to move into it and I will do more harm than good. The only thing he seems to really enjoy doing is telling his sister what to do on a regular basis.
Sometimes it feels as though he is excluding himself from life and this is what worries me most.
Guess I will just try again tomorrow to find something that inspires him. Wish me luck!
![12113 - Apprentissage - [EXPLORED 1/6/2022]](https://live.staticflickr.com/65535/52942938865_3719dcdea7_s.jpg "12113 - Apprentissage - [EXPLORED 1/6/2022]")
Raising kids with diagnosed/undiagnosed autism 