Home > In Their Own Words > The Icing on the Cake?

The Icing on the Cake?

Ajay Rochester is a best selling author of 5 books on health and wellness and was host of The Biggest Loser Australia for 4 years. She now lives in Beverly Hills California with her son Kai, has a TV show in development and is currently working on her latest book “247 toothpicks – Living, Loving and Laughing with Aspergers!” You can follow her journey at www.chasingoprah.com

Putting the finishing touches on my son’s birthday cake I realise I have made a huge mistake. No, not misspelling his name, not miscounting the number of candles but making the wrong number of penguins to sit atop theAntarcticasnow scene I have spent the last week making. It has to be seven penguins or it just won’t be the work of love I want it to be.

There won’t be a foot stamping “I want a pony daddy” scene like Veruca Salt in Willy Wonka’s Chocolate Factory but it can mean the difference between a peaceful week leading up to the birthday picnic we have arranged or constant obsessing and begging to make the penguins total seven, more than likely winding up with him making his own out of paper and plasticine, placing it on top, unintentionally bringing the whole cake down – a little like our life in general – beautiful one day, stormy the next!

But, if “fixed”, could go so far as avoiding or at least minimising the inevitable anxiousness and almost guaranteed teary meltdown we always experience moments before any social occasion out of the normal weekly routine not excluding birthdays. It’s like my son has permanent stage fright except that in the words of the late great Shakespeare, “…all the world’s a stage…”

And before the high and mighty perfect parents with perfect children (aka the deluded ones among us) tut tut and say it is all about having discipline and being well behaved I must explain that my son has Asperger’s Syndrome – a high functioning form of autism .

Every kid is different, every day is different, every age changes the way in which it manifests, diet and nutrition can make all the difference one day and do nothing another. There is no “cure”, no antidote, not enough experts, differing opinions, too many sceptics, too much politics, not enough support, way too much ignorance and far too much discrimination from those who don’t get it. And yet if I was given the opportunity to “send him back” and make him “better” I wouldn’t. He is my blessing, my joy, my challenge, more meaningful than any troubles I might ever have, much more important than anything that rises up in my own ego, more precious than any metal I own and exactly as he is meant to be – perfect in his imperfections.

He’s not retarded or slow or dumb, despite having been called all that and more from kids and stupid parents alike (lucky they haven’t seen me reply with my fists!! GRR). He just sees the world differently a little like having blinkers that enable him to only see the world his way.

He loves penguins (thus the penguin cake) because they flap their wings like he flaps his hands uncontrollably when he gets stressed – the official term is stimming but we call it “Pengy hands” in an attempt to embrace all that he is with a healthy dose of humor. If you can’t beat it then have a bloody good laugh about it as often as you can cause when the tough times come there can be some very dark days. We like to BE the light at the end of the tunnel rather than wait for it.

At various times he has sucked his fingers, sucked his hair, sucked his clothes, sucked pens, hated washing his hands, washed his hands obsessively, been water phobic, food phobic and is currently germ-a-phobic. He can’t stand loud noise or bright light, could not touch paper for about a year (that was a tough year at school) and for a year and a half could not touch clothing for two hours after bathing and as such I had to lie him on the floor like a baby needing a new diaper as I slid pants onto my eight year old son, crying inside for the pain, desperation and humiliation I saw on his face. But with a tickle of the tummy and a joke about him always being my baby we turned it into an intimate moment, a few seconds to tell him I love him taking the focus away from what was really going on.

These phases come and go but the list goes on. We had the lumpy sock syndrome for a few years, with Kai frozen in his inability to get his shoes on his feet and get out the door to school crawling under the bed, smashing his head with his foot calling himself stupid and retarded and wishing he could die because in the midst of his disorder he knows it is not “normal” to feel these things.

Knowing him as well as I do, I know (but can’t ever really KNOW!!) the tsunami of fear rising up inside of him every time we do something out of the ordinary including having a birthday party – something every kid talks about year round! Not knowing what the next part of his day will smell or sound like, not knowing how the people will be, what it will look like, what will happen, whether or not he knows their names, how long it will go for, what he is expected to do and what might happen if something goes wrong if he can get there at all…it’s like putting a French speaking professor of science in a room full of Japanese history students and expecting him to teach the class and have the students tested at the end. Most kids would be peeing their pants with excitement whereas my boy wets the bed with fear, still at the age of eleven.

And so, with that old adage of “you have to pick your battles” as a parent of a kid with Aspergers you take that to a whole new level. You give them as much security as you can, as much familiarity as is humanly possible, including making seven penguins on his birthday cake because inside he will be happy all day knowing that that one thing is perfect perfect perfect perfect perfect perfect perfect and therefore gives him the solid foundation he needs to deal with all the other unknown frightening overwhelming factors of that day.

That way when we blow the candles out on the cake we can say, “Happy Birthday!” and mean it!

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

  1. alsopollyanna
    May 26, 2011 at 11:34 am

    Ms. Rochester, U R a WONNNNNNNNNDERFUL writer! I felt I was rite THERE w/ U & Ur son, living Ur life in the best way possible… TY 4 Sharing this here!! BTW: Ur cake is AWWWWWWWWWWWWWWESUM!!! HAPPY BIRTHDAY 2 Kai!!!!

  2. Eric's Dad
    May 27, 2011 at 8:38 am

    I can totally relate to just about everything you wrote, from looking for the best in every situation to choosing your battles to getting something PERFECT to water issues to reactions from other parents to calling himself stupid and wanting to die to birthday parties or other special occasions, but most of all I relate to being the light at the end of the tunnel! My son is now 16 … Awesome article!

  3. Joyce
    May 27, 2011 at 11:23 am

    Thank you for sharing that awesome story of Kai and you. You are doing great, dear one. I can relate, too. Our little great grandson (almost 5) is learning to deal with people, places and things, too.

  4. jerseygirl757
    May 27, 2011 at 12:19 pm

    Excellent blog and thank you for sharing. I live that life everyday. My son is now 17 and we also have Aspberger’s. I say we because it challenges us all. As my son is turning 18 in July, I have found myself growing afraid. As most parents are happy to begin the process of letting go I want to hold on tighter to protect him. This seems to be my greatest challenge to date. Yet somehow I must dig deep within to find the strength to help him transition to adulthood.

  5. michelle
    May 27, 2011 at 4:48 pm

    Great article – brought me to tears right at my desk. I can relate to everything you wrote. From the kids calling your child names, to parents totaly not getting it. From the meltdowns to my son telling me he wished he was dead. My child is 11. Happy Birthday Kai. Your an awesome child who has an awesome mom!

  6. May 27, 2011 at 6:09 pm

    Thank u all for such lovely comments! Really appreciate it and send blessings to u all x

  7. Adonica
    May 28, 2011 at 11:29 am

    Thank you so much for sharing. I cried and laughed as I read because I can so relate. My son has never been “officially” diagnosed with Asperger’s because he is very high functioning but reading this is like reading about him. But I am with you- He is my blessing! : ) Thanks again!

    Adonica

  8. Nancy Walfish
    May 28, 2011 at 11:34 am

    Loved your letter. I have a 5 year old granddaughter with Asberger’s and she is the bravest person I have ever known.
    You are a wonderful mommy and you MUST tell yourself this every day. Someone once told me that a perfect mom is right 50% of the time.

  9. moonsie
    May 28, 2011 at 11:42 am

    oh yes, been there and beyond! from having my son refusing to eat any green food (it IS evil you know), getting lost and scared at mainstream school because of noise and too many people being there, only wearing white socks and me having to cut all the labels out of clothing because ‘it hurts’ etc etc etc with love, creativity, educating others on accepting, the education authority telling me he’ll never get anywhere in life… and a very special school my son (now aged 21)is studying Video Game Development at University (and getting straight A’s), has taught himself japanese, manages his own finances and has a steady girlfriend. This summer he’ll be learning to drive. He is still obssessed with Pokemon and video games and I’m still a pokemom! Wouldn’t have it any other way.

  10. lacretia
    May 28, 2011 at 11:44 am

    Great article!!” Makes me smile to know im not the only one!! My son is 9 and my little joy!! So relateable, loved reading this!! Thank you!!! Happy Birthday Kai!

  11. Belinda
    May 28, 2011 at 12:04 pm

    Thank you for sharing. Tears in my eyes as I can relate. Reading about other experiences always gives me hope that we can do this and that even though my family is far away and my friends don’t quite understand, we are not alone. Thank you.

  12. akcbrsmom
    May 28, 2011 at 12:23 pm

    What a beautiful story and a beautiful family! Although my 20yr old son has never been “officially” diagnosed as having an Autism Spectrum Disorder it is my belief he does. He does have a rare genetic disorder, Kabuki Syndrome, and has many of the same behaviours and responses to stimuli as Kai. Sadly, what I relate to the most is hating and wanting to kill himself and believing he is a horrible person. In reality he is a very sweet,loving,caring and kind man.( How strange to write man and not child.) I am truly blessed!! How lucky your son is to have a wonderful Mom!

  13. Joeysmommy
    May 28, 2011 at 12:25 pm

    What a wonderful post!! I hope your son had a very happy birthday – the cake was beautiful and his mother’s love is too!!

  14. Liz
    May 28, 2011 at 12:31 pm

    Happy Birthday, Kai! Thank you, Ajay, for your heartfelt and eloquent words. I thoroughly get you, as only another mom of a magnificent child with asperger’s can. Wishing you and Kai all of the best that life has to offer, always!

  15. Robin
    May 28, 2011 at 12:54 pm

    I can relate. My son is 12 with Aspergers. Yesterday was his last day of school at his private, very structured school. Today is the beginning of summer break. Another transition he cannot handle. He woke up this morning in a rage and mad at the world because today will be different from his routine. After hitting his grandma and telling the entire house that he hates us he resorted to his bedroom to play with his legos to calm down. It has been 4 hours and he is still…calming down. I need soem resources that can keep him busy for the summer. A routine. Anything. If anyone has suggestions let me know. Thank you.

  16. May 28, 2011 at 1:37 pm

    Beautifully written! Thank you for sharing this story. So many people don’t even know what Aspergers is. My daughter is 17 and has it. She wasn’t diagnosed until middle school with it though, in pre school her teacher said she was shy and non focused. I had her tested to see if she was ready for kindergarten, and even though she couldn’t draw a house or do the alphabet, he said yes, she would catch up. She was an avid thumb sucker and blanket flicker, and was made fun of in kindergarten. Then she became either a dog or horse, constantly behaving like one…it was very embarrassing for the family! lol…..she is gonna be a senior next year, but we don’t know if she will graduate with her class..she’s behind in credits, trying to take English 10 and 11 all at once. Her yearly IEP meetings are a joke. But we are doing the best we can. Just getting people to understand why she isn’t so graceful in social situations is the hard part! But otherwise she is beautiful, smart, funny and caring. I wouldn’t trade her for any rocket scientist!

  17. Nancy McCauley
    May 28, 2011 at 1:56 pm

    I felt like i was there, your a wonderful Mum and Happy Birthday Kai… :)

  18. tamtamsuzette
    May 28, 2011 at 1:59 pm

    Wow I just cried Johnboy loves penguins since he was 2 years old. He will turn 16 years old in August but I could see his eyes boggle at that cake. lol he just got diagnosed this year so it is hard dealing with what others said/did and me not defending him the way I should. I mean he can discuss global warming and world politics then he is like a 2 year old in his behavior I cannot explain. John has always been so verbal but he always and still now says penguins like that lil 2 year old. He did go to the zoo and seen the penguins but as John says it Pangwins mommy look at the pangwins.

  19. marni
    May 28, 2011 at 7:58 pm

    You are a great mom! I have been there with 3 and know all about it! Somedays just getting underwear and socks (have to be inside out) on seems like the biggest accomplishment. Unless you have been there no one understands and looks at you as if you are the worst parent in the world. It is good to know there are others out there and I am not alone!

  20. penny w.
    May 28, 2011 at 8:21 pm

    So many times people thought my son was misbehaving, and many shared their disgust and/or words of wisdom without even knowing me or the situation. I learned to be a turtle along time ago and let it all slide off my back. We are so lucky to have these amazing sons in our lives. Thank you for your beautiful, inspiring, and positive words!

  21. Suzanne
    May 28, 2011 at 9:22 pm

    What an awesome article. Kai is lucky to have a mom like you. I’m an aspie,(though fairly “mild”) and I remember what it was like to be that age. Support from your family is incredibly important. Happy Birthday Kai! You have a great mom!

  22. Gina
    May 29, 2011 at 12:28 am

    I love what you say about being the light at the end of the tunnel instead of waiting for the light. You are compassionate and understanding of your son’s situation.

    As the mother of a 7 year old boy with down syndrome and mild autism, I am saddened that the “r” word (retarded) has been used against your son. My son so far (to my knowledge) has not been taunted with that. He does take more time to get ready and understand directions, and there is nothing wrong with that. He is on his own time line, and communicates verbally, with pictures and with sign language. He is a bright light, and very affectionate.

    I hope that your community will embrace you both. We all have a personal obstacle, mine just doesn’t happen to have a name or label!

    regards,

    Gina

  23. Kammy Kramer
    May 29, 2011 at 8:00 am

    Wow – you are a fabulous writer! Thank you for sharing these experiences with us – 2 of my 3 kids have ASD, but have issues very different from Kai in some ways (not as much sensory, lots of “control of the environment” stuff. This gives your readers a window into your world, and allows us to understand what’s difficult/challenging and what’s unique and wonderful about Kai. We all learn so much from sharing our experiences – thank you for sharing yours!

  24. Karen J Gordon
    June 16, 2011 at 8:29 pm

    Thank you for sharing your story. My niece’s 5 yr old boy is Autistic. I am trying to help her. I recently babysat so she and her husband could go out to dinner for her birthday. At the last minute they told me that recently he has refused to wear ANY clothes while in their house. They hoped I wouldn’t be offended. Well, truthfully I found it unnerving but sure wouldn’t not babysit because of it. Do you have any advice how to deal with this behavior.

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