More Rave Reviews: A Full Life with Autism

Elaine Hall,  creator of the Miracle Project, author of Now I See the Moon, co-author of Seven Keys to Unlock Autism and  subject of the movie “AUTISM: The Musical” has this to say about A Full Life with Autism:

A Full Life with Autism provides parents of teens on the autistic spectrum understanding, guidance, hope, and resources to navigate the uncharted territory of adult living.  Thank you, Chantal and Jeremy Sicile-Kira for responding to questions that so many of us parents are aching to know.  Thank you for brilliantly weaving  the parent perspective with Jeremy’s internal dialogue.  Thank you, Jeremy  for bravely articulating what is really going on inside the mind/body of someone with autism. I will use your words as starting points in my discussions with my own son, Neal.

A Full Life with Autism reminds us that the true “experts” on autism are our children; and that we, the adults, must listen to their wants and desires, then find the resources to help them realize their dreams.  I will be recommending this book to everyone I know.

 

 

Modern Love

My son is pining for a girlfriend. He’s on Facebook.

Relationship Status: Single
Interested In: Women
Looking For: Friendship, DatingA Relationship, Networking.
Political Views: Go Obama!
About Me:  I like to listen to music and walk on the beach. I can type with one finger. I have autism.

Jeremy is quite a catch – he’s buff from working out at the gym,  has an endearing personality, and he starred in an award-winning episode of the MTV ‘True Life’ series.  Never mind that he is autistic,  and  needs help with everyday living skills, and probably always will. (In my opinion, he should be looking for a traditional wife who will take care of him, instead of a girlfriend, but I digress).

One night recently I woke up at 3:00 am to find that all the houselights had been turned on. Usually a sound sleeper, Jeremy had been making the rounds.  I heard him downstairs and decided to investigate. He was looking through my husband’s collection of architecture books. He found the one he was looking for, Las Vegas: The Fabulous 50’s, and flipped it open to the section on strip clubs and showgirls. “Why are you up, Jeremy, what’s going on?” I asked. “I’m thinking about girls,” he replied.

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Dear Santa

Dear Santa,

This year, I am not asking for a cure for breast cancer, or cures for world hunger, ignorance, the crappy world economy, homelessness, the negative aspects of autism, greediness, war, global warming, or any other crisis facing the world today.

This year, I am being purely selfish and asking for fulfillment of a few basic needs for my family. I realize that compared to others, we are a very fortunate family because we have a roof over our heads, and my husband and I still have work (although we are making only 2/3rds of what we were making the year before and the cost of living is way higher, but why quibble?).

At the risk of appearing greedy, here is my wish list for what I would like to find under the tree this Christmas :

1. $100,000 for a college education for my daughter, Rebecca. She is graduating from high school in June, and according to the local papers, she will be lucky if she graduates from a state college or university in 5 or 6 years, if she gets in at all. Our beautiful state is broke, so there will be less students admitted to the colleges in fall 2010. Rebecca is applying for scholarships, and working some, but it’s not going to be enough. There is not much in the way of student loans anymore. We have equity in the house, but we need to save it for real emergencies, like if our income continues to spiral downward (oh, and our son requires 24 hour support, and how are we going to pay for that?). Please, can you help us here? We’d be grateful even for a quarter of that amount.

2. A bigger iPhone for my son, Jeremy. I know this may sound like a weird request, but he can’t talk very much due to his autism, and Apple has this great program called Proloquo2Go which can give him a voice. Problem is, the iPhone keys are really too tiny for him. Jeremy uses another assistive technology device, but it is heavy, hard for him to push the buttons, and frankly looks very ‘special ed.’ Not only that, but it costs a small fortune compared to the iPhone, and breaks down often. Communication is key to being an active part of society, and looking cool is important at his age. Please tell me you agree and grant this wish.

3. If you don’t have any pull with Apple re: the iPhone, another wish high on my son’s list is a girlfriend, because besides communication (and $$$) what is life without love or a warm body to hug? I’m sure living at the icy North Pole, you and Mrs. Santa can relate to that. Seems like something a mom shouldn’t have to ask for her son, but although my Jeremy is buff from working out at the gym and really cute, he’s not typical boyfriend material what with his autism and all. Funny thing is, Jeremy doesn’t understand why I just don’t run out to Costco and get him a girlfriend – I’ve been getting him everything else he needs all these years like occupational therapy, speech therapy, physical therapy, vision therapy; why not a little massage therapy? Maybe you can help with this one?

4. For my husband and I, my request is not that you give us anything, but we would like you to take back the 15 extra pounds each that we have put on stressing out on #s 1,2,3 above on our wish list. Feel free to re-gift them to someone else who could use a little fattening up. We would be happy to know that we are helping a family in need.

5. Last, but not least, For our dog, Handsome, and our cat, Gabe, a year’s worth of food would be helpful. We’ve had to start rationing and Gabe keeps trying to get outside to hunt for her dinner, and we really like the birds in the area – we don’t want them to end up in Gabe’s tummy.

I guess that’s it for what we’d like to see under the Christmas tree this year. I know there are people worse off than we are, and I feel guilty even sending you this letter. I hope you understand.

Thank you in advance, Santa. We wish you and Mrs. Claus, all the elves, and the reindeer, a very Merry Christmas and a Happy New Year!

Sincerely,
Chantal