Demand avoidance

So weekends can be somewhat tricky in our house depending on how the little mans week has gone. Usually by Friday night he has had enough of the world and wants to escape to his room for a recharge of his batteries ( I know the feeling!). Sometimes he refuses to get dressed, do his teeth and leave his room at all for the whole weekend......not often, but its usually when he is in the middle of a really anxious period, and he becomes so demand avoidant it cripples him, and as a result I can become a prisoner in my own home

He has this sleeping bag that becomes his cocoon for the weekend, he walks around in it, sleeps in it and sits in all day if he possibly can! If I have to nip out to drop his sister off somewhere I have to persuade him he has no choice but to come with me .. and then he will hop out in this flipping sleeping bag and quite happily sit in the back of the car all huddled up in it! I dread to think what my neighbours must think if they catch sight of him sliding along the footpath like a slug to the car.

The sleeping bag slug suit!

I often find myself negotiating the days activities on his timetable..... as when he really doesn't want to do something or is too anxious to even cope with it I really need to psych myself up for the fallout if I try to and force it. We have had many a family day out that's started in disaster before we even reach the car simply because he can't cope with demands of getting ready. I need full body protection at times, and sometimes when I simply cant face the stress I don't even bother trying. Its taken me years to get confident enough to not care what people think now when I back down and don't force it...... but I have my own sanity and his sisters to think about too.

My sons demand avoidance takes many forms from the annoying and quite frankly irritating to the damn right dangerous. .....and I know its all anxiety driven. Take today for instance. It was my nephews tea party and he was really getting fretful about going. It was all timetabled in on his visual schedule, so he was prepared about who would be there....how long we would be there..... you know the basics based on what I knew! But as the hour approached his behaviour began to ramp up. You see for him going to a party makes him as nervous as if we were going to a job interview I reckon. So much uncertainty.........

Where will I sit? What food will there be? Who will want to talk to me? What if I need a wee? What if there is a funny smell? What will they do? What music will be playing? Who will sit next to me? Will they want a hug? Will mum talk for the whole time and ignore me? Will the other kids be too loud? I don't know what to say?.....
The list of his worries, if he could verbalise all of them all, would be as huge as my weekly shopping list I think. I also think he has an exaggerated perception of the possible threat. So to him being a few minutes late or making a mistake ..well its like the end of his world.

So in order to protect himself from all this uncertainty and worry, my sons natural reaction to this huge anxiety is to avoid the demands as much as he can to keep himself safe. He displays this with challenging behaviour, which to an onlooker appears like he is a naughty kid which couldn't be further from the truth!

 Today we had tears, panic, refusal to get dressed, fretting, hiding in the slug suit, wiping off the schedule from the board and then finally swearing. On really bad days it has led to self injury and a mum on the verge of a mini  breakdown.I had two choices this afternoon.....I could continue to force the demand to come to the party or I could accept the fact that he was obviously in no frame of mind to cope with what I was asking him to do! Today because my husband was off work I took the easy route out....... some may not agree with me but the alternative would have meant  his sisters would have had a dreadful time, I would have been stressed, battered and bruised, and my son would be exhausted in the process... the party would have been no fun for any of us (that's if we had even got to the car in one piece)

In order for my son to access anything he has to feel safe and in control, and in situations like going to school of course its absolutely necessary to he learns to overcome his anxiety, but that's a very long slow process that involves a lot of support for the adults helping him. As a general rule if my son is displaying challenging behaviour its because as the adult I have put him in a situation he doesn't feel safe in, or he doesn't feel he will be able to cope with.. so he panics and either tries to run away or lashes out and becomes even more rigid in his thinking.

So you know what ....  I think regardless of what others may think, I have to be the one who is flexible. They are not living my life so have no idea what the stress levels can become like in a family like ours. I am learning to pick and choose my battles for the sake of the whole family not just my child with Autism. So today me and the girls went out for a couple of hours, had a lovely time at the party, and my son was happy at home with his dad. Its not giving in, or being soft, or letting him walk all over me.

 I would love for us to be this perfect family unit that goes to family gatherings and parties all together and it would be all sweetness and roses and well, normal ! But for my own sanity I cant dwell on that too long cos it would upset me if i thought about the 'whats ifs.' This is my reality and I have to accept that sometimes its the right thing to be flexible, and keeping his anxiety low is important not just for him ....but for me and the whole family.
After all its no fun for anyone living in the middle of a battle zone day in day out.

From a nannas perspective .......

I asked my mum how she would feel about contributing to this blog, as having a child with Autism impacts the whole family.
This is written by her and she means the world to me.
She is always there for me, he may not be able to say the words but I can... Mum I love you xx
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Harry Potter means I love you......(Autism from a Nanna's perspective)

“Harry Potter” means  l love you.
To me that is the most wonderful expression of affection l could ever wish for from my grandson.
If l don’t get anything else, then so be it.

Watching my daughter struggle with her son on a daily basis was very difficult, still is sometimes.
As a mother your instinct is to protect and seeing her being punched, kicked and swore at  was one of the hardest things l had to learn to cope with.
My grandson is very special and he needs that extra care and understanding.

You see, it has taken me a very, very long time to accept my grandson for who he is and not what l think he should be or how l think he should behave.
But, as a nana l wonder if l am doing enough to help, am l doing it right. I attended classes to understand more and it really   helped me to understand. But at times l still get the overwhelming feeling of helplessness. If l feel like that then how does my daughter cope.

A mothers love holds no bars. Just like my daughter l want to protect and provide.
Having a child with Autism effects all the family, sibling, husbands and grandparents. But, by making little steps, listening to each other, accepting help and advice along the way then there is a light at the end of the tunnel believe me. You can do it together as a family.

A few days ago my grandson attended his new school, a very traumatic day.  My daughter needed a “mummy” cuddle and a shoulder to cry on. If that’s all l can do for her and without judgement, then l accept the challenge with open arms.
Now on his 3rd day, no tears what a result. Let us see what tomorrow brings. 

I have gladly become a “buffer” but more than that l have become a supportive and understanding nana, and l love it.
I have a very positive relationship now with my grandson. He will come to my house ( but nobody elses ) and we have a rapor that l didn’t dare hope for before.
I text him every day….. I love you my ray of sunshine.. He replies… Harry Potter nana.
That will do very nicely Thankyou. 
LITTLE STEPS.

Welcome to a Slice of Autism

After years of contemplating doing this I have finally decided to give this blog thing a go as way of celebrating our lives and making some sense of it all, also for anyone that's interested in hearing more about my crazy life or hearing what its like for families like ours I hope it will be of some insight.

So a little bit about me to start......Well I have three fabulous kids and a sports mad husband (a passion that sadly I don't share). Our son was diagnosed with High Functioning Autism last year after a 4 year waiting list! Despite the shock, the overriding emotion we felt was that of relief as we actually had an explanation for our slightly dysfunctional family...anyway I will save that for another day!

Through life's ups and downs I have struggled to find my own way to deal with the wonderful insanity that Autism throws my way, and I still do to be honest. But a couple of years ago I discovered a love for baking of all things. And now when I am whippin' up a Victoria sponge my mind begins to drift away to another world of eggs and flour, icing sugar and chopped nuts..... and away for IEP's and schedules, routines and melatonin (if only for 20 minutes while my cake is rising in the oven!!)

So this little 'ere blog.... I hope will reflect my life, even just a little slice of it, warts and all as its not always a successful story, sometimes I sink in the middle, or rise to quickly and can explode in the heat of it all. But I pick myself up eventually and with patience I have another go, and sometimes ...just sometimes  it turns out blumin amazing! .......