TBH - coming clean about that autism *taboo*
|Before the Storm - when Puberty came to town..|
I've been meaning to write about my son’s current phase of behaviour for quite a while. But I guess I was waiting until the storm had passed, that we had found a way to resolve it, and I could write an uplifting post full of practical advice and solutions.
But something else has prompted me to come clean and talk about what we are going through. I had a conversation with someone yesterday where I was asked what I thought of an event on the weekend, and in a moment of weakness I answered:
"To Be Honest, for us it was as much about the night off in a hotel, our son has been very difficult lately and we needed the respite.
and this person reprimanded me firmly saying "Oh I would never typify my son in that language"
I was shocked, and replied "I'm not being negative about my son, but he can be so challenging at times and it is exhausting.
She went on to say something about knowing its hard, but it is hard for all of us and not to think of myself as a victim. (I'm paraphrasing, but it is hard to hear through a red mist of shock)
A Victim? FFS!
I have kept this quiet for so long. I love my son, I ADORE my son and admire him for all his lovely quirks and his intelligence and his charm. But I am sorry, he has AUTISM and since becoming a teenager he has developed anxiety which manifests itself in controlling behaviour.
We haven't been able to talk to each other at home for 3 years. That's right. If me and my husband try to have a conversation Liam interrupts it.
I hate even typing this because it sounds like we live in one of those miserable autism households where everything is hopeless. And we Don't. WE SO DON'T!!
We are proactively trying to manage this stage - and the experts tell us it is a stage that will pass when puberty is over. We have the behaviourists monitoring it, our lovely family Psychiatrist has observed it and recommended medication and made a referral for respite.
We assessed the level of control he had over the entire household and then changed all our rooms around to try and manage it environmentally. Liam was occupying the open plan attic as his "bedroom" and the Living room as his "den" where he controlled the TV, Sky box, DVD player while playing on his computer and iPad - all at the same time.
So Liam got moved into our bedroom. I left all the DVDs in the attic, and he has a DVD/Video player in his new bedroom. His computer is now in the kitchen - where all teenagers’ computers should be.
The Living room is now Our Bedroom.
Yep, we are like the house in "Charlie and the Chocolate Factory" where the grandparents all sleep in the living room. Well, actually, we were able to move some couches into part of our kitchen and make that the "living area" but yes, our bed now sits in what should be a living room.
My son took all this change surprisingly well. He calls our new room the "Hotel Bedroom" and he is right, because we still have a couch (and a fire place) but he no longer *owns* it. I think he kind of likes the new bedroom on the second floor. He likes being able to close the door! (ahem)
We are coping, but it is stressful and you need to keep your head straight.
And that was what was so upsetting about that reprimand I got from that person yesterday. I was being judged by a standard they had set for themselves and in doing so they were implying that we should NEVER talk about the negative aspects of autism.
I love and cherish my son. But this behaviour can get very tiring.
I didn't choose this situation. I'm trying to be strong, to find the good in life. To wake up on a cold clear day and be glad it is not raining. To have a cuddle, a giggle and a RAR! with my not very verbal girl. To go to all the charity shops in the city and buy videos, then eat sushi with my giant of a boy who I adore.
So please do not tell me not to admit to enjoying a bit of respite when I can.
I agree, that we communicators have a responsibility not to reduce autism to its lowest common denominator in blogs, documentaries, interviews and newspaper articles. Because if you do talk about the worst day, there might be someone out there who has just had a diagnosis and is despairing at the idea that *every* day will be like your worst day.
But there are also many people out there who are having the bad days like you, and need to feel they are not alone in it.
I try and inspire, I share the positives but today I am coming clean and sharing the Taboo.