How do you respond when you hear your child has autism?

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How do you respond when you hear your child has autism?

We are all unique. It is what makes life interesting. Yet right from childhood we are expected to fit in and become the proverbial square peg in a square hole. We are programmed to react sad to bad news, excited and happy at good news and relief at hearing something is either not as bad as we thought or if it confirms what we have been expecting. As complex people we can even experience all that in just one go and often remain composed and professional on the outward appearance.

I have twice sat in rooms with various professionals and been told my child has autism.

How am I meant to respond?

Should I cry because my world has just turned my upside down; so many dreams I had for my child shattered as they have just been a life long diagnosis that could potentially limit them?
Should I sit in silence remaining composed while I am told all the deficits and difficulties my child has?
Should I look the person in the eye while they talk to me about their assessments that day and what other professionals have said about my child?
Or should I be relieved that my child just thinks a different way to others and count myself blessed he is just the same beautiful and loving child I brought in an hour before?

Am I wrong to keep my feeling to myself and keep the news confidential? What if I feel I want to share with immediate family only for support? Is it acceptable to update my social media with such news right away?

Should I ring a help line, search the Internet or immediate join a support group? Is there books I should real or pamphlets I take away with me?

What can I do about this? Should I be trying to change him or should I accept this? Should I be investigating private therapies or wait for further investigations or referrals?

What will this mean for my child’s education? Will this affect his health? Will he ever speak to me? What about the future?

While all this and so much more ran though my head on both occasions I heard myself thanking the person, shaking their hand and then finding my child to take them home.

I am never really sure if they expected me to cry. I wonder if they felt I was not hearing what they said. Maybe I even came across as uncaring or in denial? Would professionals have slated me for telling people, and even worse updating my social media that very day?

This week I heard more news on my children. Once again I found myself thanking the people concerned and shaking their hands. It seems the right thing to do. I have been programmed to be professional, not take up their time, and be dignified.

But we are all only human.

Never, ever let anyone tell you how you have to respond to that type of situations. It is ok to cry. It is ok to grieve. It is ok to retreat, tell the world and everything in-between. It is ok to feel trauma. It is ok to feel numb, or even relief.

Hearing your child has a life long condition with no cure is tough. Yes your child is still the most amazing, wonderful, beautiful child you took in to the clinic that day but things still change.

They change. You change.

However you respond when you hear your child has autism is the right way. There is no wrong way to respond. Even if you leave with a huge grin on your face dancing all the way home that is still ok. If it takes months of crying non-stop after the event that is also fine. You are all right. You are human.

In time how you feel changes. Then sometimes, like I had this week, you may have a co-morbid condition added on too. Then the whole emotional roller coaster can start all over again.

We are all unique. Your child is not a square peg but let me tell you something…you don’t have to be either. Be who you are. React how you react.

How do you respond when you hear your child has autism? There is no wrong way.

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Extremes of emotions on holiday

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We all experience emotions all the time. And children with autism are no different. But where we can usually calm ourselves down when angry, understand the need to slow ourselves down and end a game rather than becoming hyper or even soothe ourselves when sad, this is an area where people with autism can so often struggle. They find regulating emotions so difficult and can often swing from one extreme emotion to the other very quickly leaving everyone around them puzzled and confused.
This week I have seen this become an every day reality in my non verbal son. We have been on holiday this week in a caravan. No matter how hard we try, his routine has had to change. There is no school on holiday and at times this has been a massive challenge for him. He has used the iPad to show me pictures he has found of anything school related in an attempt to question why he isn’t going there. This is not helped at all by the fact the only thing he will ever let us dress him in is his beloved school uniform. He doesn’t ‘do’ holidays. He ‘does’ school. So even in a caravan 50 miles from home he has still been looking for his school taxi and pointing to any similar looking car we pass and screaming.
Every day has been like walking on a tightrope. He doesn’t ‘do’ wind down and chill. He does ‘get up and go’ from the second his eyes open to the second the melatonin finally kicks in and he drops off for a little sleep. And for a non verbal child he can be extremely demanding and loud.
Internet is limited where we are. And boy has he let us know how this has frustrated him. His favourite interests on the iPad are you tube videos of lift doors opening and closing over and over again, and google maps. And he has been most unimpressed that you tube and google do not work as he expects them to. You can’t explain terms like signal or coverage or wifi to him. All he knows is he presses the buttons and mum makes them work. So mum is at fault. And he then throws the iPad at me, scratches me, bites me, hits me and screams. Holiday? What holiday? Autism doesn’t take a holiday.
So you take him out and keep busy. But this isn’t the swimming pool he normally goes to. So you have to literally drag him screaming through the corridor to the changing rooms because he does not understand that other places can also be swimming pools. And he screams at the look of the different changing rooms. And I start to question if all this is worth it. The moaning, the screaming, the ‘challenging behaviour’ seems endless.
But then he gets in the water and immediately changes to the hyper, laughing, splashing, happy boy. Within seconds it was like someone switched my son. From one extreme emotion to the other just like that! And then getting out he switched right back, instantly his body got out that water.
The same with soft play. He loves soft play. But nope, this isn’t soft play to him. Because it isn’t one of the ones we normally go to back home. So you pay money to carry in a screaming five year old while everyone looks at you and quickly turns away. If only this child would wear his autism t-shirt at least now and again. But no, he has to wear his school uniform which just somehow makes it all look worse. It must look like I am manhandling a child on some school trip to the seaside. Who would believe we are actually on holiday trying to have some down time? But once in and he realises that this is a soft play, the tears stop, the flapping and chest beating starts again and he giggles like he is the happiest child you ever met. If only the scratches and pinches he gives me could vanish as quick as his tears!
Going anywhere in the car this week has seen him in default mode of whine. ‘Uh, uh, uh’ has been on constant play since the minute the car pulled up to the caravan park. It is a dull moan of wanting attention, of saying in his own way that things are not ‘right’ for him, of making it clear he isn’t happy. But the whining barely stops. So you would think this child was hating being in the caravan on holiday.
Yet one minute later he is out on the decking flapping, running up and down, laughing hysterically at a dog barking or cow mooing. Or waving his arms in complete ecstasy because he is being pushed in a swing. There is no in between just now.
So I feel like I am on that swing too. Except it never stops. We have the highs of laughter, hyper ness and flapping and chest beating followed immediately by screaming, moaning, scratching, kicking, pinching and throwing. We have the sheer innocent excitement of seeing the seaside followed immediately by the danger of him running straight out to the sea. Unless he is strapped in a car seat, buggy or swing there is no sitting down. There is no watching a dvd or looking at books, or colouring in like his twin sister. It’s just all about him. It’s all go. It’s exhausting and draining. For everyone of us.
In fact I need a holiday to recover from the holiday! Autism doesn’t take a holiday. It is extreme one way and extreme the other. Isaac can’t regulate his emotions. And right now I am struggling too. If you asked me how the holiday was going I would have to answer with ‘sometimes wonderfully, sometimes dreadfully.’ If only there was a happy medium. Now that really would be a holiday!

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