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Four Things You Can't Recover PDF Print E-mail
Written by Gayle Nobel   
Saturday, 02 January 2010 22:00

Four things you can't recover:


The stone.......after the throw.
The word........after it's said.
The occasion.............after it's missed.  
The time.........after it's gone.

Live Now

 
Christmas, Autism and Why I Believe In Miracles PDF Print E-mail
Written by Gayle Nobel   
Saturday, 26 December 2009 11:07

 I hope you all had a wonderful Christmas (or whatever holiday you choose to celebrate). We made our own dates for Hanukkah this year since it wasn't until December 25 that our entire family was able to be together.

Yesterday was wonderful. I had the opportunity to hike Lookout Mountain  and contemplate life from the top. Then I sat with Kyle out on our front wall. We both  quietly basked in the Arizona sunshine for a very long time. (So THIS is why we put up with 115 degrees in the summer!) I visited my brother Philip and watched his face light up as he took the jar of pickles out of his gift bag. Our immediate family was together in the evening with the addition of Rachel's boyfriend, JB. This was his first Christmas away from his family in France. I was  pleasantly surprised when Kyle came back to the dinner table not to eat, but just to sit with us. He was also  peaceful and even stayed in the room  the entire time while we all opened gifts.  Reminds me once again, there are "moments" lurking everywhere when we are awake to them.

I wanted to share this inspiring piece I found by Jean Shaw.

Christmas, Autism and Why I Believe In Miracles

 Normally I hate this time of year. The Christmas mail generally brings with it cards from old friends and acquaintances. Whilst I love to hear from them I often feel envious and cheated for they make me think if what might have been if only my son hadn't developed autism.

I know it's wrong but I'm only human.

However, this year I seem to have got things into perspective. Instead of yearning for what I may have missed, I appreciate what I have.

The Season of Good Will didn't start too well. I took my son on a train journey. He loved it. The train was full of Christmas shoppers and commuters so we were unable to sit together. However, I managed to get a seat directly behind him and watched as he sat staring out of the window, a finger in one ear, reciting story lines memorised from his vast array of videos.

The lady next to him, engrossed in her paperback novel appeared not to notice, but a young child, three years old apparently, did. With the innocence of youth she asked her mother and grandmother:

"Why was he was talking to himself?"

"Why did he have his finger in his ear?"

"Why did he look out of the window all the time?"

In the quietness of the crowded carriage her persistent little voice carried and her carers were visibly embarrassed. They tried, as best they could to divert her questions but were fighting a losing battle. I noticed soon many people were glancing at my son and contemplating his somewhat unusual behaviour.

Tears welled up in my eyes as I looked at the little girl for it brought back memories of happier times. I remembered how my son used to be such a chatterbox; friendly, sociable and inquisitive. Then came autism and his world and that of all around him changed forever.

Life's unfair.

One of the things I find really hard is my son's inability to share his thoughts and feeling with me. I never really know what he has done when he's not with me, who or what he likes and dislikes and what he really wants. Usually I have to guess and birthdays and Christmas times are very difficult.

On the positive side it means he doesn't continually pester me with demands for "I want" this and "I want" that but it would be nice to know I occasionally got things right for him.

This year, I think I have and it's all because of a typing error.

My son loves videos and he has literally hundreds. Now I know the specialists will say that's a bad thing because it fuels his desire to be repetitive in as much as he can watch the same films over and over again. He doesn't though. It's true he does watch them more than once but rotates them, and as he has so many that's no different from watching tv every night. The thing is he learns from them and they are not violent.

However, in the sleeve of every video there are usually pictures of other videos in the same series, or by the same producers, and the reason my son has so many is that he feels he has to have them all. To him they are collector's items.

The problem is most of them are very old, many going back to the seventies so finding them is difficult. I use car boot sales, charity shops, word of mouth and on-line market stores, and for the past six months have been searching for two specific titles.

I knew my son wanted them because he has shown me the pictures in the video boxes, has written the titles out on a piece of paper which he thrusts in front of my eyes every time I go on the internet, and drags me to his tv every time a trailer comes on to mention them. He also tells me what they are, and says, "presents Christmas Day" as he points to 25th December on the calendar. As if that isn't evidence enough he has left two gaps in his display where the videos will go once he gets them.

It's been a worry because I haven't been able to locate them and was concerned how I would explain to my autistic son that even when he tries really, really hard to tell me what he wants I can't deliver.

Now, however, because of a typing error I have both of them.

A local newspaper ran an article about my son and I because of a book I'd just written. They got my name wrong. I started off as Jean Shaw but somehow ended up as Mrs Smith.

Now I had no problems with that but saw it as a last minute desperate attempt to locate the videos my son so badly wanted. I contacted the reporter and asked if he would print some sort of apology simply so that I could appeal to the readers to look out their old stock. He said "no problem" and a few minutes later rang me back.

He told me he's checked on one of the online market places and both videos were there for sale. I was amazed, having checked regularly for the past six months. I thanked him, put down the phone and promptly ordered and paid for them. Today they arrived.

It's Christmas Eve and my son will wake up tomorrow morning a very happy boy indeed.

Who says miracles don't happen?

Also this week son's school were performing their Christingle Service in the local cathedral. It is a beautiful, serene building over 1000 years old. The architecture and decorations are quite magnificent. Set in a flat landscape the huge cathedral can be viewed from miles and is known as The Ship Of The Fens. It gives people hope. Just thinking about its construction makes you realise no task is too great and when you go inside there is an amazing atmosphere of peace and tranquility.

My son attends a school for children with special needs. Each child is different and provides a varying degree of worry and anxiety for his or her parents. Some children have both physical and medical disabilities, others mental or behavioural problems. Some are confined to a wheel chair, whilst others just wander, unable to stay still. However, every single child is cherished and valued for who they are, and their achievements, no matter how small, are acknowledged.

As I sat in front of the huge Christmas Tree gazing up at the amazing stained glass windows, and carved and painted ceiling, I listened to the carols and recitations by the children. I watched my son perform Rudolph the Red Nosed Reindeer dressed in his antlers, scarf and red mittens. He was so confident and happy, it made me realise how lucky I really am.

Life, I know is about being grateful for what you have and those letters no longer bother me.

Yes, I believe in miracles.

Jean Shaw writes articles  and is the author of I'm Not Naughty - I'm Autistic.

 

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Last Updated on Saturday, 26 December 2009 11:20
 
Moments PDF Print E-mail
Written by Gayle Nobel   
Tuesday, 08 December 2009 10:11

We were at Cheesecake Factory celebrating Kyle's 26th birthday. This evening was very much a celebration of Kyle. A few years ago, I may have said this would be impossible for all concerned. A year ago, I may have said it  would be a big stretch for Kyle. This year, on this birthday, it seemed like the natural place to go. It was a culmination of all that he had accomplished  and worked toward over the last few years.

For many families, celebrating a birthday with a  dinner out is  typical and probably taken for granted. For us, it was anything but typical, and we certainly didn’t take it for granted.

From beginning to end, this was an evening of moments. Though Kyle had never been to this particular restaurant before, he seemed comfortable from the get go. Even walking in through a revolving door (brand new experience for Kyle) did not seem to phase him. In the past, that might have been where the evening ended or perhaps it would have "thrown" him into stress for the rest of the night. Thanks to Kim, his friend, mentor, and coach, restaurants have become familiar, enjoyable territory for Kyle.

I sat across the table from my son  who sat quietly (yes, quietly!) , calmly and patiently as he took in the surroundings. Comfort and joy were planted firmly on his face. He sipped his strawberry lemonade delicately through a straw. The glass was full to the brim but this was not an issue for Kyle. He had to wait for quite a while for his meal, but again, not an issue. He seemed to be enjoying every moment of this birthday celebration. Many times, he turned to the side to look  at Kim, his friend and mentor. He was connecting and checking in with her (another  big accomplishment for Kyle).

Tonight it didn't  feel “hard” to be with Kyle in a nice restaurant. The evening was enjoyable and comfortable. I was proud of my son.

"I thought about what brought us to this place in time. There were so many roadblocks and unexpected twists and turns. How did we get here? There was no magic formula; just persistence, I suppose. Believing in more than what we could see. Trusting ourselves, yet also allowing others to teach and help. Growing in our own roles as guides in the school of relationships and life, as Kyle grew as apprentice."*

And, watching for those moments.

PS  My holiday wish for you, dear readers:  keep putting one foot in front of the other and believe in and go for more than you can see. And most importanly,  notice and CELEBRATE those moments!

*From my upcoming book, "Breathe" 52 Oxygen-Rich Tools for Loving and Living Well with Autism

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Last Updated on Tuesday, 08 December 2009 14:33
 
Speaking My Truth PDF Print E-mail
Written by Gayle Nobel   
Friday, 06 November 2009 16:30

 Here is something I wrote in response to a call for parents to speak out regarding their "take" on the Autism Speaks video. 

I am a parent and author. I have seen the Autism Speaks video. In fact, I was supposed to share a table at the upcoming walk in Tempe, Arizona and have since told the company that so graciously invited me, that I can't in good conscience, connect myself with Autism Speaks.

I have lived with autism my entire life. Both my son, age 25 (living at home) and brother, age 49, (living in a group home) are on the low end of the autism spectrum.

 I got to see first hand the way my mother was impacted by society’s stigmas. Fortunately, we have come a long way in creating a more compassionate and understanding world when it comes to our children with autism. However, we still have a long way to go.

Frankly, I'm not surprised by the Autism Speaks video. It is  the logical extension of making autism the enemy. They are all about the fight. The default position in life is to see autism in this way. It's sad that Autism Speaks has bought into this and is promoting this way of thinking.

I cringe as I envision a new parent seeing this video. They would be justified in a reaction of "Well, just shoot me now and get it over with." Is it necessary to paint such a grim picture of life with autism to go after the almighty dollar? What kind of awareness are we trying to raise anyway? The awareness of pity?

Why does Autism Speaks insist on making autism ugly? It's challenging enough to educate the public on how to accept, embrace and make room for our kids. What we need are more supports for our children, particularly as they become adults. Our kids don't need fixed- society needs fixed. As far as I'm concerned this video is damaging. It also distracts us from what families and children (and adults) really need from the world. It is certainly not a larger pity party.

I look at my own life and believe I have very much triumphed as I have lived with a child extremely affected by autism. I have worked with the obstacles placed in my way, I have a happy marriage of 29 1/2 years, two compassionate children who are not on the spectrum, an amazing son who IS on the spectrum who has taught me in every way how to be a better human being! And I mean in every way! Living with autism asks a lot of us and I believe my entire family has risen to the occasion and beyond.

We only have one life. We can either make the best of it or the worst of it. We can embrace the children we have been given, love them "as is" without needing to fix them while at the same time doing everything we can to help them be the best they can be.

We need more supports for helping them be their best and helping US, as families, be our best, We don’t need organizations such as Autism Speaks to reinforce stereotypes that we have worked so hard to eliminate.

It’s sad that a national organization that is supposed to be “helping” is promoting this kind of mentality.

It’s true. The high functioning adults do not understand our children or the stresses we live with. How would they?. They have their own stresses. However, I am grateful to them for speaking up. Autism Speaks would do themselves a favor by listening.

Fortunately, we get to choose the beliefs we decide to live by. These beliefs hurt children and they hurt families. Autism is not a battle we need to fight. It’s another way to be a human being. It’s all about supports that will help lift us up not ugly stereotypes that will drag us down.

I speak out for my son and my brother, who can't speak for themselves.

Gayle

 


Last Updated on Friday, 06 November 2009 16:42
 
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