Worrying about the future.
One of the reasons I found "Autism and me" so tough to watch was because of the fear of the future I carry around. Some days I can bury it and convince myself to not even think about it. Those days I'm living one day at a time and focusing on the next hurdle ahead for us.
But other days... It's all I think about. What about when they are older? I haven't met an autism parent yet who doesn't worry about the same thing. I have questions that circle around my brain begging for answers.
1. Will they ever live independently ?
2. Will they be able to manage money or drive?
3. What happens when we are gone ?
4. Are we looking at residential care ? How will we afford it?
5. How do you explain periods or the stresses of puberty if they are still non verbal then ?
I could go on.
Aside from the concerns we have now with speech and school etc. there is a whole other world that comes with being a parent to a special needs adult. If Logan is hard to manage and restrain now at 3, what about when he is 23?
And yes it's cute and funny when Kirsty goes up to perfect strangers and smells them at 5 years old but what about when she's 12 or 13. Not so funny then. You are entering a different place with boundaries and rules, that as adults they need to follow. But how do you teach them ?
I know there is no answer. There is no way of knowing how they'll end up, what kind of adult they'll be. Watching the documentary gave me some hope, but it also felt like I was being shown a preview of years to come. As if someone was saying " prepare yourselves, here's what you can expect ".
I suppose because a lot of kids I've met with ASD are still young, the older kids are not what I'm used too. Seeing how they navigate the world when they aren't babies anymore was hard. There's a sense of innocence when they're young. They are oblivious to the fact that they're different.
The older those kids got, the more aware they seemed that they were different, they knew they stood out. It didn't seem to bother some of them, others it definitely did.
As a parent you can't shelter them from that anymore. Their peers become their judges and they are open to hurt and upset from the whole world.
The catch 22 is that even though I worry about not being able to shield them from hurt, I also worry about them being so severe in their autism that they'll never feel it to begin with. How can you win when you want them to progress so desperately but you worry about what comes with that progression too?
And will it ever leave me? This constant worry and aching about their futures? Maybe not. I'm my own worst enemy. Worrying about things that may or may not happen.
Tonight is one of those nights I'm trying to reach far into the future to see what's ahead. Hopefully tomorrow I'll be back in 2017 and taking each day as it comes.
Xxx
Elaine
Wednesday, 15 March 2017
Monday, 6 March 2017
Explaining autism.
Where would you even start ? Trying to explain something so complex and ever changing. People ask me all the time.
Everyone knows the technical answer. We've all heard the terms. " Neurological disorder, social and developmental delay"... type in autism into Google and the first response is " A disorder of social disconnect ". All these terms can be so daunting and scary. If you're a new autism parent what does it all mean?
Firstly, autism is a spectrum disorder. The word spectrum literally means an array of things. And this is certainly true for the autism I've encountered. No 2 children with autism are the same. I have 2 myself. Both diagnosed before their 2nd birthdays with the same condition, but 2 completely different children. When Logan was diagnosed we started all over again, as if it was our first time.
Even though our kids are so different there are a few traits or behaviours that kids with autism seem to share. A few similarities that enabled the powers that be to come up with an overall term to fit them all. The best way I can describe them is to talk about my own little girl and boy.
The social aspect of everyday life is one of the most challenging aspects an autistic person deals with. When you are young you listen and learn. You watch adults talking, watching each others expressions to gauge responses and taking turns in order to listen and converse with each other. Some kids with autism don't do that. They can't do that. Their brain tells them " Don't make eye contact, I don't like it". Kirsty doesn't see the need for play. If she wants us to help with a puzzle or the Ipad she'll engage us, but other than that she is happy on her own. I'm sure her little imagination runs wild but she doesn't see the point in playing with others. She is that girl you see playing on her own at a party, while a group of 10 kids huddle around the Mickey Mouse or face painter.
Or that kid that just doesn't get invited because the other kids think he's weird.
I've heard the conversations..." all he does is talk about trains, it's boring".
So he stays home. With his trains.
These are some of the most heartbreaking scenes a parent can watch. Acceptance is a thing some can only dream of for their kids.
Our kids are wired differently. Their little brains see things we don't.
Take this example.
I see a pack of magnets in a shop, I see an array of colours and sizes. I know I could organise them if I wanted to but it doesn't bother me that they are mixed up. It bothers Kirsty. She sees multiple colours and sizes and in her head it's all wrong. She needs to put the red with the red and the blue with the blue. That's right for her.
Kids with autism crave their routine. The same foods, the same tv programmes. If it's familiar then it's safe. Just last week I bought custard pots from Dunnes instead of Aldi. No way would Kirsty eat them. They looked and tasted the same to me. To her they were miles apart. Her little mind works in facts and that was incorrect!!!
Logan is not as rigid as she is. His biggest problem area is around his anxiety. Lots of kids want cuddles and reassurance but they are happy to potter around in between. For Logan, the need for reassurance is constant. The world scares him. Sudden noises, changes in his habitat, if he doesn't expect it, he can't deal with it. He looks to us for something familiar and runs for the nearest door. He visibly relaxes once he's home.
He lives for his own surroundings. It's tough to bring him anywhere that he doesn't know. When we do go anywhere new he clings to the buggy and focuses completely on the iPad so he has some sort of familiarity. Even at that, the timer is running in his mind. Once the buzzer goes it's home time and no one or nothing can calm him down. My heart breaks when I think of him in years to come. The thought that life will always be this hard for him is more than I can bear.
The truth about autism is that it's not understood. Our kids are living in a world that they don't understand and that doesn't understand them.
Why does Kirsty feel the need to smell a strangers hand or flap her own?
Why does Logan not see that Monkey Maze is fun, much more fun than the car or home?
The world doesn't get them.
Even their little bodies don't sleep like we do. Kirsty can wake at 2am every night and not even yawn until 9pm that night.
Why can't they just talk? A child once said to me " it's easy, just tell her open her mouth and the words will come out ".
And many an adult has said to me " if she's hungry she'll eat it".
Unless you live with it you just can't explain but eucation is what we need.
Education, awareness and a little understanding along the way.
❤❤❤
Where would you even start ? Trying to explain something so complex and ever changing. People ask me all the time.
Everyone knows the technical answer. We've all heard the terms. " Neurological disorder, social and developmental delay"... type in autism into Google and the first response is " A disorder of social disconnect ". All these terms can be so daunting and scary. If you're a new autism parent what does it all mean?
Firstly, autism is a spectrum disorder. The word spectrum literally means an array of things. And this is certainly true for the autism I've encountered. No 2 children with autism are the same. I have 2 myself. Both diagnosed before their 2nd birthdays with the same condition, but 2 completely different children. When Logan was diagnosed we started all over again, as if it was our first time.
Even though our kids are so different there are a few traits or behaviours that kids with autism seem to share. A few similarities that enabled the powers that be to come up with an overall term to fit them all. The best way I can describe them is to talk about my own little girl and boy.
The social aspect of everyday life is one of the most challenging aspects an autistic person deals with. When you are young you listen and learn. You watch adults talking, watching each others expressions to gauge responses and taking turns in order to listen and converse with each other. Some kids with autism don't do that. They can't do that. Their brain tells them " Don't make eye contact, I don't like it". Kirsty doesn't see the need for play. If she wants us to help with a puzzle or the Ipad she'll engage us, but other than that she is happy on her own. I'm sure her little imagination runs wild but she doesn't see the point in playing with others. She is that girl you see playing on her own at a party, while a group of 10 kids huddle around the Mickey Mouse or face painter.
Or that kid that just doesn't get invited because the other kids think he's weird.
I've heard the conversations..." all he does is talk about trains, it's boring".
So he stays home. With his trains.
These are some of the most heartbreaking scenes a parent can watch. Acceptance is a thing some can only dream of for their kids.
Our kids are wired differently. Their little brains see things we don't.
Take this example.
I see a pack of magnets in a shop, I see an array of colours and sizes. I know I could organise them if I wanted to but it doesn't bother me that they are mixed up. It bothers Kirsty. She sees multiple colours and sizes and in her head it's all wrong. She needs to put the red with the red and the blue with the blue. That's right for her.
Kids with autism crave their routine. The same foods, the same tv programmes. If it's familiar then it's safe. Just last week I bought custard pots from Dunnes instead of Aldi. No way would Kirsty eat them. They looked and tasted the same to me. To her they were miles apart. Her little mind works in facts and that was incorrect!!!
Logan is not as rigid as she is. His biggest problem area is around his anxiety. Lots of kids want cuddles and reassurance but they are happy to potter around in between. For Logan, the need for reassurance is constant. The world scares him. Sudden noises, changes in his habitat, if he doesn't expect it, he can't deal with it. He looks to us for something familiar and runs for the nearest door. He visibly relaxes once he's home.
He lives for his own surroundings. It's tough to bring him anywhere that he doesn't know. When we do go anywhere new he clings to the buggy and focuses completely on the iPad so he has some sort of familiarity. Even at that, the timer is running in his mind. Once the buzzer goes it's home time and no one or nothing can calm him down. My heart breaks when I think of him in years to come. The thought that life will always be this hard for him is more than I can bear.
The truth about autism is that it's not understood. Our kids are living in a world that they don't understand and that doesn't understand them.
Why does Kirsty feel the need to smell a strangers hand or flap her own?
Why does Logan not see that Monkey Maze is fun, much more fun than the car or home?
The world doesn't get them.
Even their little bodies don't sleep like we do. Kirsty can wake at 2am every night and not even yawn until 9pm that night.
Why can't they just talk? A child once said to me " it's easy, just tell her open her mouth and the words will come out ".
And many an adult has said to me " if she's hungry she'll eat it".
Unless you live with it you just can't explain but eucation is what we need.
Education, awareness and a little understanding along the way.
❤❤❤
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