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Under the Sea

18618642_10155212899245030_1725112754_oWhen visiting friends and family while Chris was growing up my parents needed a distraction; that was either food, or Disney. My dad had friends who worked for a museum in Larnaca and we used to visit them often and eat yummy food. They had a little girl who owned ‘Magic English’ cassettes. For those of you who don’t know, they were an aid to learning English by using Disney characters and movies. He took one look at the opening theme song and that was it: obsession acquired. (Episodes here) I know that my family is probably reading this and remembering the theme song in their heads right now. ‘Magic English, Magic English, have fun with Disney everyday‘.

Naturally, we had ALL OF THEM.

When I was growing up, I was lucky enough to learn both Greek and English and so growing up bilingual. When Chris started speech therapy, he had his Magic English tapes. He watched them non-stop. He didn’t play along, or speak, or use the same words but he paid attention. So, for example, when he saw Flounder he knew he was a fish, when he saw Mickey he knew who that was, what he was doing and why. He just couldn’t express it. You see, the problem with the world today is that we value spoken word over unspoken. We have been programmed to believe that someone who doesn’t ‘like’ your picture on social media thinks you’re ugly. Someone who doesn’t share their feelings is up to no good or doesn’t care. We stopped reading between the lines and somewhere between those lines is my brother.

There is one scene that I remember most of all. It’s using the Little Mermaid, introducing all the characters and ‘Under the Sea’ is playing. Sebastian is singing away, being all Sebastian about life under the sea, I think it was part of the Friends learning cassette. I remember him smiling, dancing, and enjoying that scene. I remember how much of a teenager I was thinking this was silly because it was so basic. I remember it now, and I wish I was back there pushing him to repeat words, to learn them in English, dancing with him and just enjoying his happiness. Hormones are such nasty things. (Magic English – Under the Sea). Before Aladdin and the Lion King, Chris was obsessed with Pinnocchio, the little boy who wished to be real. He loved it when Pinnocchio and Jiminy were under the sea meeting random fish and trying to find Geppetto; and he would hide when the whale was on screen. That scene is also in the cassettes.

Those cassettes were a big part of our childhood and yet another part we owe to Disney.

He loves anything that has to do with water or the sea. You may remember that it was during a Sandy Holiday that we first thought of autism and how he loves swimming on his own. Aquatic treatment is also one of the alternative therapies I mentioned earlier on: We’ve found that water provides a safe and supported environment, which not only supports Chris, but also provides him with hydrostatic pressure that surrounds his body in the water. This pressure actually soothes and calms him, providing him with the necessary sensory input he craves.

What awoke this memory you wonder? Or maybe you don’t but you’ll find out anyway. The Scarborough Sea Life centre introduced an autism-friendly morning last Saturday (13th May). The centre will opened an hour early for an “Autism friendly session”, “with an accessible quiet area, considerate lighting, reduced sound and exclusive use to help families enjoy the aquarium experience in a relaxed and understanding setting.”

If you are in the UK: Max Card is a card you can apply for with your local city council if you are a family with additional needs, not just autism. The scheme is designed to help families save money on great days out at castles, zoos, bowling alleys and more. With local, national and international businesses becoming more autism aware this card might be used more than you think! Autism-Friendly events are expected throughout Merlin Entertainments attractions including Alton Towers and other Sea Life centres in the upcoming months to make sure all children in the UK have the chance at experiencing a magical day out. For more information and booking details are online at www.mymaxcard.co.uk/venues/autism-friendly-day .

I encourage you to use the Magic English aids (^they are all on YouTube, link above^) whether your child is in speech therapy yet or not. Its an entertaining way to spend the afternoon and you may not see immediate results but it does make a difference.

Remember, just because you can’t see progress, doesn’t mean it’s not happening.

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Autism Every Day Part 2

Autism Every Day

Following on from that minefield. The mothers speak of how marriage falls apart because of Autism. I think autism makes families stronger. I believe that we are stronger, more in-tune with each other because of autism. If a marriage fails, it’s not because of autism. When you live with it you go through the exact same thing, together. Autism doesn’t cause divorce. Yes, there is pressure, anger, constant fear and you are changed as people for the rest of your lives but blaming autism for your marriage falling apart is like blaming the door when you run into it. The door is there, its constant you just have to work around it, through it. I’m not saying there isn’t a link but to call it a direct cause for divorce is not something I would condone.

Irony: my parents are separated. Not because of my brother, not because of anything to do with my brother. In fact, autism is the only thing they will stand united for, for ever. I admire them for that, because even in their separation they would stand together for him, and there is nothing greater than that.

Up All Night: Says it all. All I can suggest is a schedule, with times and dates. Each hour has the activity they should be doing. Chris loves his programme, it keeps him calm. Every night his programme says he’s going to bed at 9pm, even if he doesn’t sleep until 12pm, he will still go to bed at 9pm. A programme (with pictures if it helps your kid better) will make their lives so much easier. It gives them structure, a routine a place of reference when they get upset. Use hours of the day, or just set it out on a line. Use pictures of activities (as mentioned in previous post) to make a timeline for them of their day. Make sure you point out each activity when its time to do it and take it down when its done. It might be hard at first, but in the long run it will benefit them. Of course, there are times when the programme is the source of the tantrum; if you change something on it, if the time comes and you’re not doing the activity.

Dreams Deferred:

It’s not wrong to admit that it took you a while to let the life you had before go. No, because it was your life and your routine and its gone. We’re quite lucky because Chris started travelling with us at a very young age. So, it became part of his life very early on before he was diagnosed. He loves the process, he loves the plane, the airports. He’s an angel; definitely not always but 2/10 he is an angel – and those two make it all worth it. But that’s not the case with all autistic children. No two children in the spectrum, in the world, are the same. For the siblings I think its different. For me, it made me have dreams, it made me want to go out there and catch my dreams and make them true. It gave my life a purpose so strong, so meaningful. I can sympathise with parents who give up dreams for their children, its not wrong to say it out loud because at the end of the day you made the right choice.

It might be odd, but I don’t worry about him not getting married, or having children. It saddens me that he won’t experience love in that way but I think they experience it in different ways and depth. There are moments when he comes out of his own galaxy and orbit needing your affection and its beautiful. He’s very loving with us – hugs, kisses, cheekiness, sympathy when we’re angry at something, empathy when we cry – he has the ability to share these emotions with us, he just has to choose when. And who’s to say that there won’t be a stunning new treatment in the next decade that will enable us to get closer to them? It doesn’t scare me that he probably won’t have a friend. I know that if he wanted one, he would get himself one. He would want to go play with them – like he does sometimes – he would want to watch movies with them, or engage in their activities – like he does when he wants to. It doesn’t scare me because he’s happy doing solitary things, and he’s happy doing group things – when he wants to. It doesn’t scare me because I can embrace who he is, just the way he is. Just because marriage is considered by society to be a ‘norm’ doesn’t mean everyone should do it in order for their lives to be complete.

Don’t be sad because you, maybe, won’t be able to dance with your kids on their wedding day. Be glad that you can dance with your kids every day.

No Surrender:

Some of the comments read that the video presents autism as something unbearable, as the parents complaining about their lives. If you live with autism and say you’ve never complained – you’re lying. Everyone is allowed to complain. Everyone is allowed to get off that horse, have a little walk around as long as you ALWAYS get back up on that horse. There is no surrender, this is our life. Everything we do is autism, everything we spend, every step we take is autism. It’s not weak to complain, or reminisce or say out loud how hard it is. It’s healing, and it doesn’t make you a bad parent. Further to this, like I’ve said before, no two children on the spectrum are the same, which means that no video, documentary will ever be able to please everyone. They need to take individual cases, they need to tell their stories; just like you need to tell yours. So, share your story and make people aware.

Autism isn’t all stress and sleepless nights. The first time they say a word, the first time they do a small thing they’ve been working on for months, the unexpected affection, the indescribable feeling of passion and power they give our lives are more than enough to keep you going forever. But we are raising awareness; so be as honest as possible.

Don’t focus on one video, one woman’s thought. Learn about Autism, educate yourselves.