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| 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 mean:
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.
xx
Comments
Can I ask, was that lady an autism parent? I would find it hard to believe she actually knew what she was talking about. I have nothing but admiration for you & Mr D. You guys are an inspiration to us all. You are the most pro active autie parents I've ever met.
& yes you do deserve "a rest" in whatever way you can get it, xxx
Love Vicki
Taz xxxxxx
And as for yer wan in her ugly judgy pants ......fuck you missus :p
My experience of teenage physical aggression is limited, but I will say that my kid was physically aggressive as a younger child (she had a VERY low frustration threshold) and would break things (when locked in her room on a time out) or hit me. She was also verbally aggressive at these times. Her pediatrician said it was in the spectrum of "normal childhood behaviour" - albeit on one side of the bell curve but I was convinced she was possessed by Satan on occasion. It was incredibly hard and she was small (though strangely strong). I can't even imagine managing this with a grown-sized boy.
So you have all of my love and support. I know you will manage through this as a family. And when it's done, I hope you get some fantastic present to commemorate your strength.
I went through this with my son too. To be honest it has not really gone away either. But after years and years of it, he knows that he cannot control everything, and he has to remove himself from the room now if I am talking to those he feels threatened by.
I used to have to ask him to ask his brother something, and get his brother to give him the answer to give back to me. Such was the meltdown if me and his brother were talking and he couldn't understand our conversation. It was a complete fking nightmare for years, and it caused havoc with family relationships.
Every stage of autism has its own challanges, but for me, this has been one of the worst phases I ever had to survive.
So fck anyone who judges you. They need to walk an hour in your shoes, and they would soon shut up.
Keep going girl, your doing a great job xxx
All autism mammies need support from each other & I believe it what's us through the days that are really tough.
Someone out there is going through the same thing or has come out the other end & please god they can chat to you.
Autism is so hard but the one thing we all Love is our children x
never ever ever give up!
there are always choices, always options... looks like you guys are making good ones!
Chat soon, A
On another note, Rob is strong enough to move your telly. You just let me know if you need him. He's freakishly strong. :)
On Tuesday night I felt like I could not cope with another day of this. Not only did I have Liam playing up, but every time he did, not only was I dealing with my fear, I had that nagging voice in my head suggesting I was "playing the victim" while I was standing outside Liam's door trying to calm him down - well it was awful. You have to feel confident to see through behavioural management procedures. A lack of certainty can make a kid like Liam even more anxious as he wonders how far he can go.
Much wine and a disruptive night's sleep followed and when Liam woke us all up early on Wednesday, then promptly fell asleep on the couch beside me (big baby that he is) I covered him up with a blanket and used the time to write this blog.
By writing it down like I had taken some of my power back from that person, and with each Facebook share, and email notification of comments, my confidence grew. I'm not alone in this, there are a lot of other people who feel this way. I am so grateful for every message, every kind word, the showing of your own vulnerability to support me in mine.
Thank you all of you. xx
Mac
What you wrote was brillant in response and I hope it helped you a little and also helped you forget that stupid woman and her stupid comment!
You rock as a Mom!! Don't ever forget it!!
ps-Bill is a pretty awesome Dad too!!
Regarding the woman who told you off. Fuck her! Seriously. She can fuck right off.
Take care x
So, THANK YOU for writing this.
Thank you for sharing, and I'm glad I've found your blog.
I am sorry to hear that things are so difficult for you all, and for Liam, right now. I hope writing this all down helps too.
By sharing this you continue to be an inspiration....
xx Jazzy
I am reading this as I ponder on the budget cut to the Respite Grant, and I feel so so very angry!
Sending you Nana's hugs. I wish I could do more...
I have seen the fights, tantrums, even shitting in the corner of the living room and I know that keeping calm is incredibly difficult.
One boy had all the aggressive behaviour that your son is displaying but at a much earlier age. I used to want to KILL him when he beat the crap out of his younger sister. I HAVE NO IDEA how his parents coped.
Anyway, the thing that surprises me the most isn't that woman's comment, but your strength, attitude and spirit. You deserve another award my dear.
X Lillian
I am very cognisant of the views of Autistic Self Advocates when I share the negatives of parenting. But I was lucky enough to be-friend, via this blog a young man with autism in Northern NSW. Together we explored our perspectives of autism. He was very empathetic for his own mother, as he remembered feeling and behaving a bit like my Liam. And I learned a lot about why Liam would want to act out with such explosive force.
This young man is now at university and too busy most of the time to be conversing with an old Mom like me. But I hope that one day, I can have a similar conversation with my own son, and learn why he felt the way he did when a teen, and why it might have upset and frightened me.
Liam can always be sure of my love. I will do anything to be connected to him, we are so alike! but when his rages threaten his sister, then I have to make hard decisions.
We are lucky enough to be getting some help at the moment and I am counting the good days (2 so far)
I wish that to all parents in my situation. All of you.
xx
I remember when my gorgeous boy was younger. Most of the time he was perfection, in his very own unique way. A gentle gentle child. At around the age of 6.5 something changed, well much changed. Mostly it was reactionary to the anxiety of school, profound sensory issues, serious bullying issues, dysgraphia and dyspraxia frustrations, speech issues and well as most Autism parents know it goes on. His aggression wasn't person and often self harm was a bigger concern, the running away and going missing etc. at the age of 8 or 9 it escallated and he began hitting me, the meltdowns so extreme, the things I had understood came undone. I had years of natural therapies training and had managed to teach myself endless techniques but these ceased to work. I read an article about the blocked or lack of functioning in neuroreceptors in Hormones in Autism. So the hormones flood through unregulated at speeds often 10 times more than the non autistic person. They begin earlier in Autism too, the worst ages begin from 6 and often slow and regulate a little better around 10 or 13 depending on the child. Which is also the time the child is recognising their difference in the world. But mostly when they are wanting to express and process input that has been learned in early development. My son expressed it to me as frightening because in the snap of a second he felt fine and suddenly he was fuelled with emotions, anger and energy with no reasoning, his sensory processes instantaneously went into over drive and meltdown with no time to regulate or find ways to calm as he had learned to manage before this time. He hated it and carried tremendous guilt over the aggression. He also described the files in his brain freezing like a computer and he was often not always baled to remember what happened during these explosions, which also scared him. I learnt so much about his depth when he expressed this so beautifully, if only it was earlier rather than near the end of the worst of it. And I had the benefit of his communication which so many other parents don't. And this was a blessing. After reading the article I researched more and more, sadly there is little information around about this time and the whys, or research into the hormone processing but I did find lots of useful things. For us the things that worked best was zinc and magnesium with homeopathic chamomile a. Calming and hormonal regulators. I had to watch closely for the look that said explosion imminent. I got it wrong more than right for a while. I tried the medication road but he had an allergic reaction to the meds and almost died. Worst month of our lives.