Asperger’s Syndrome – each child is different.

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Both my kids have Asperger’s Syndrome.  They are completely different from each other.  I denied for years that my daughter has Autism traits, but as she grew older and the social situations at school became more and more fraught, it became impossible for me to deny anymore.

She has Asperger’s Syndrome too.  Because she has grown up with her brother, who has Asperger’s, and has a very negative opinion on what Asperger’s is, my psychologist and I decided not to get her assessed, even though I would get extra financial assistance for her if I did. Because the diagnosis would impact her self-image so negatively.  So she doesn’t know.  Her self image is more important than $100 a fortnight.  To her it would be a damning label.  But it guides me in how to help her.

They both have Asperger’s, but she has few similarities to her brother.

The are both highly anxious, but about completely different things.  My son used to have more severe anxiety, about very explicit things.  Sharks.  To the point that he wouldn’t set foot on a beach, because, sharks.  Would. Not. Set. Foot. On. The. SAND!

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And would not let anyone he cared about set foot on the sand.

No beach holidays for us.  My ex and I loved the beach. No more beach holidays ever.  (I still don’t have beach holidays, but my ex does). We had beach experiences.  Educational experiences.  Truth be told my husband went body surfing and I was left to try to calm the extremely anxious toddler, and then child, and reassure him that his father was not going to be eaten by a shark.  I held him while he screamed in terror at just standing at the back of the beach.  I endured the looks.  I also managed my toddler daughter, just a year younger.  But I kept exposing him to the beach, so that he would learn, become accustomed, desensitized.

But that’s the thing about Autism, kids on the spectrum don’t learn from experience.  They have preconceived ideas that are incredibly hard to shake. Good experiences barely shift these negative ideas.  So while each time I would eventually (hours later) get my son playing in the sand, sitting on a towel, even digging and making sand castles, the next time we started over, from SCRATCH. Square one. With all the same fears, the same level of anxiety and the screams and tantrums and violent behaviour.

Every. Single. Time.

The ‘beach experiences’ eventually became shorter, and as he grew older, he improved. But he was teenage before he could walk onto a beach without fear.  Now he says he hates the beach, but he can go to the beach.  It still takes time to get him to relax, and he won’t be happy for long.  But I have had him playing in the sand, swimming, playing beach soccer, kicking the ball in the water…he was having the best time ever.  But two hours later he will still assert he had a terrible time and he hates the beach.  The thoughts are that ingrained.

So, for a couple who used to jump in the car and head for the beach spontaneously whenever we could, that was quite a strain.

No beach holidays.  Ever.

He also couldn’t do dinner out. We didn’t go to a restaurant for 9 years.

He couldn’t do heights, to the degree that I couldn’t drive into a multilevel carpark with him in the car.  He would panic. Truly panic.  He couldn’t walk over the walk bridges to get into the shopping centre either.  But I persisted.  Once we got into the shopping centre, he would skirt the walls on the top floor, pressed hard against them to get as far away from the railing and edge as possible. And he would scream in terror.  But again, I kept taking him. Holding his hand, talking to him, holding him. He would be four metres from the railing, and utterly terrified. I always had to be between him and the railing…and the drop to the floor below.

So, no beach. No shopping. No dinners or lunches out.  Not ever.  When we did it, it was a teaching experience, a chance for me to expose my son to things he needed to learn to negotiate.  It was never relaxing. It was always torturous. And it was always my job to deal with it, because my ex-husband refused to accept or believe there was anything wrong with my son.

Holidays meant taking ALL the things that my son needed to be comfortable…his most important two stuffed toys, his ipod, his three blankets, his pillow, his cuddle pillow, his doona.  Usually a whole bag full of things from home to make his sleeping quarters feel like home.  He hated to be away from home. He hates it still.

Holidays were the most incredibly hard work. They still are.  I have taken two weekends away with just my daughter.  And its bliss to just go and have a holiday.  She has missed out on all those things as well.  But her anxieties are different and not as severe. But my son’s anxieties restricted us all.

You imagine never having a holiday that wasn’t an utter nightmare.  No such thing as a quick shopping trip.  Never being able to just grab lunch at a café, or a quick dinner out.  Can’t get on a plane. Can’t get on a boat.  Can’t do anything on the spur of the moment.

And people constantly told me that there was NOTHING wrong with him.  Just my bad parenting.

I was a great parent.  I put everything on hold to care for my son’s needs, and help him through his anxiety.  It put a huge strain on my marriage.  And it had a huge impact on my daughter, who now always feels second rate, and never feels like she could ever get as much attention as my son does/did.

I am not complaining about my son. I love him to the moon and back and the only reason I would change anything is for him to have a less torturous life.  Imagine being so afraid of sharks you can’t walk on the beach.  Imagine being so afraid of falling you can’t drive in a multilevel carpark, or over the Sydney Harbour Bridge.  Imagine being so afraid of other people that you can’t go to McDonalds.

There were more things, those are just the ones that come to mind.  But they had a huge impact on our lifestyle, and ultimately I feel my ex-husband just opted out. And did what everyone else did and assumed I was just an over protective parent.

But Asperger’s isn’t REAL autism, right?  It’s not a big deal.  It’s just mild. He’s high functioning for goodness sake! He gets straight As!  How hard can that be????

We could never do anything spontaneous.  Not ever.  Everything had to be planned, and thought out and every base had to be covered. Like having a diabetic child, you need their insulin, syringes, test strips…you can’t just go without those. You have to plan and pack.  And you’re always on alert, waiting for the meltdown, trying to predict the meltdown, trying to prevent the meltdown.

And my ex and I were both spontaneous, adventurous people. We had a lot of fun. We were young, fit, healthy, worked hard and played hard, and on weekends when we didn’t have to work or have gigs, I would come up with cool adventures. And off we’d go.

And then we had a child with autism.

There are more severe disabilities.  Much worse health issues.  But I got no support with my son because he appeared so normal. Everyone said he looked fine.  No support, just dirty looks. No empathy. No help.

No holidays. No dinners out.  No lunches out.  No shopping centres.

Not until he was in year four, ten years old,  did any of that start to become easier.  My marriage was over by then.

This post has gone haywire, and that’s just my son’s anxieties. Haven’t even touched on his rituals, his requirement for routine, his social problems, his lack of eye contact, his physical problems, lack of co-ordination, heightened senses, aversions to smells and loud noises, the few foods he would eat (usually only four at any one time). All of which needed to be managed every day, moment to moment to keep him calm and happy.  And now that he’s almost 16, his violence. His rage. His strength.  The self harm. The rocking, the head pounding into the wall.  The damage.

And no one would ever look after my son for me. He was difficult. He couldn’t do daycare. He had hell starting school.  One mother, who I still see on occasion, still mentions the weeks and weeks of tears, every morning, from my son. At kindergarten.  She actually befriended me because she felt such empathy for this poor little boy and his stoic mother, going through the same hell every single morning for the entire first term of school.

No one would ever look after him for a few hours so I could get a break. He was too difficult.  My husband chose to work a lot.

At the time that we officially separated, my children’s father had not spent more than 45 minutes alone with his children. 

I always had to be there to take care of things.  My son didn’t sleep through the night (six hours straight) until he was over three years old (By then I had a two year old as well) And if he wasn’t sleeping, I wasn’t sleeping.  People ask how can I possibly survive on so little sleep now. Years of practice.  Now its arthritis pain keeping me awake. But I can get by with not much sleep.

But again, I digress. Too big a topic.  And I haven’t even touched on my daughter’s anxieties, which are, completely different.  Next post.

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4 COMMENTS

  1. Ahh yes, ASD the spectrum that covers everything, explains nothing and qualifies your child for zilch. Sorry but I have 3 asps and 1 autism, so four of my six. The say if you have 1, your 25% more likely to have another. But if you have 2 your 80% more likely to have other, so I figure 80% of my kids have ASD.. it’s all in a days work- when child 1- thinks the rain will wash us away and cause a flood, child 2- thinks that child 3 is planning to murder him via drowning in the flood waters, child 3 is so excited by the rain he takes everything off and runs in he rain laughing and child 4- is yelling at me because all the others are making his Day hurt and his feelings hots and red!! No wonder I’m late getting them to school!! OOOPS just my bad parenting again, LOL

    • Yes, that sounds quite simple, Sarah. Surely you can manage that??? (But oh, those thoughts sound so familiar!) I didn’t know those stats, but if there is a genetic component to autism spectrum disorders, that makes sense. You’re a wonderful mother Sarah, keep on doing what you’re doing and all six are going to turn out fine. Better than fine! Even if you might need a drink or two now and again!!!

  2. I think that these posts have a perfect right to be on this blog. This is your life, your children’s issues impact on you and your health as well as on them. Clearly your ex decided to take the easy way out which is hugely sad because in the end he’ll be the one that loses out on relationships with them both. I have worked with several children on the ASD spectrum, all different levels and needs to deal with and as precious and amazing as those children are I can’t imagine having to deal with it all 24/7 as a parent does. I think those of you who are, are beyond amazing, parenting a healthy child with no issues is hard enough at times but this must be totally draining both physically and emotionally. I just wish the help was there to both help deal and to understand what your children are dealing with. I often wonder just how it must feel for them, to be living this life & it makes me very sad. I think these posts need to be shared to help enlighten people and hopefully to raise the fact that there simply isn’t enough help for them and their amazing parents.

    • Thanks Gillian. My parenting life has always been about other parents telling me ‘all kids are like that’, ‘all parenting is hard’, and yes, it is. But I refuse to be politically correct anymore. Parenting kids on the Autism spectrum is harder. And I need a place to explain and I want to raise awareness about this too. Thank you so much for your support…people just don’t understand unless they read or see these situations in action. Even then, its a choice to understand, or to tell themselves they could do it better and its just a discipline issue. Autism is a huge part of my life, and I love my children more than anything. I make a lot of mistakes, but I always put them first. Sometimes the struggle is needing to be in two places at once – one parent, two high needs children. Some of my friends tell me I am too soft on them, well they have a difficult life. Not only having to live in a world that doesn’t understand them, but also they have a mother who is physically disabled, so they miss out in simple experiences that other kids just get. Like going ice skating. If i can’t drive my daughter there, she can’t go. Happens a lot. And if I can’t calm her nerves, she can’t go. So many issues…I just want people to understand. And maybe take back their assertions that their kids are just the same, and their crappy parenting advice. My daughter’s issues are far milder than my son’s, but she is still high needs. And yes, their father did take the easy way out. He had the option to do so. Even if i had that option, I never would have. But a few hours respite over the years would have helped. Quite a lot. I’m rambling, sorry. I’m overly emotional, and thank you from the bottom of my heart for your support. Best to you Gillian Xxx

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