Living Beautifully, Perfectly, Autistically 11

Today I am grateful to bring you this guest post by Lydia, who writes the blog Autistic Speaks and who is also a published author of two booksLiving in Technicolor: An autistic’s thoughts on raising a child with autism and Interview with Autism. I hope you will click on the links to learn more after you read her story:

I’m living a life I never dreamed I’d have.

As a child, the single trait I could identify in myself was that I was smart.  Ask anyone, and they’d tell you that… she’s bright, they would say.  I could read before preschool, and by kindergarten had taught myself long division.  Due to my intelligence, therefore, some, uh, not-so-minor things were overlooked.  I didn’t know how to play.  I didn’t have any friends.  I had a huge vocabulary, but I couldn’t exactly communicate.

Fast forward through my childhood and teenage years, and many questions received answers when I was diagnosed with autism in January of 2009.  I was 21.  It was my final semester of college, and things were well on their way to falling apart.  No more did I dream of becoming a doctor or a teacher… I just prayed each day that I would be able to leave my room and get through class without a meltdown.  I still only had one friend.  I made it through four years of college with nearly a 4.00 GPA, never having been to a party or sporting event due to my sensory issues.

I was relieved to receive my diagnosis, because I thought that a name for my issues meant that I could start to work on them.  Right?  Well…

Enter the sensory nightmare that has been my early 20s.  I can’t leave my apartment without assistance, which I have through my state’s Adult Autism Waiver.  I can no longer drive, because my vision and vestibular senses are so mixed up.  In order to go to the grocery store, I need sunglasses and headphones.  I feel lights and see sounds.  Due to these sensory issues, my communication has further broken down.  I am highly echolalic on a good day… and on a not-so-good day, I scream, or worse, can’t speak at all.

As if things weren’t complicated enough at this point, I was diagnosed with rheumatoid arthritis just last week.  By the time I went to the doctor, I needed to walk with a cane much of the time and was losing mobility in my fingers.  Now, when my staff isn’t here, I’ll be in intensive physical and occupational therapy as a way to try to avoid the heavy-duty drugs that would suppress my immune system.

Don’t worry, the downward spiral is finished there.  Not exactly what I’d had in mind for my life…

But there is an angel in the form of a 35-pound black lab named Lexie.  She is in training to be my service dog, and she will be the grounding force in my life.  From trips to the grocery store to dealing with those horrible fluorescent lights in the doctor’s offices that I seem to be in more days than not, Lexie will keep me settled.  She’ll sense the changes in medication levels in my body.  She might even learn to sense fluctuations in my blood sugar (oh, did I leave that off?  I’ve had type I diabetes for 21 years).

Lexie will make it possible for me to continue to live on my own, to do daily living tasks, and to… have a life!  For me, she means freedom.  Freedom not just to live a marginal existence, but to continue to live this life that is so much more than I ever could have dreamed of.

Wait, what?

I told you that I’m living a life I’d never dreamed I’d have.  I never said that it didn’t live up to my expectations… rather, the opposite!  I am so much more… myself, so much more at peace with who I am, so much more in love with my life than I ever was before the spiral started.  I’ve authored two books, with two more on the way.  I’ve had a blog about autism for nearly three years, which now carries almost five-hundred posts.  I travel locally and to neighboring states to speak about my experiences on the spectrum to parents and teachers.  I may not be a doctor or a teacher… I may not even be able to cross the street without help… but I am beautifully, perfectly, autistically Lydia, and there is nothing else I could ever ask to be.

It is via Lexie that I will be able to continue to lead this life.  She will make it possible for me to continue to do speaking engagements and to continue to live semi-independently so that I can continue to write.  Regardless of my level of communicative ability on any given day, Lexie will be there for me.  She’ll be my best friend.  Now, I have no shortage of amazing friends, but the minor caveat is that I’ve actually never met the vast majority of them.  Lexie will be a right here friend, something I yearn for deeply.

With this in mind, I wrote my second book, Living in Technicolor: An autistic’s thoughts on raising a child with autism.  All proceeds from the book go toward Lexie.  She is fully funded now (I want that to be clear, so you have the whole story), but she will need food and toys and vet visits, which, on my SSI budget, will be tight.

Thank you for taking the time to read my story.  Whether you want to buy a book, keep my puppy in your prayers, or just drop me a line (autisticspeaks@gmail.com), I appreciate it greatly!

Lydia (aka, Autistic Speaks)

Are Glee Writers Using the Autism Community to Improve Ratings? 6

Read what one blogger said, crown_of_weeds: Sugar, Self-Diagnosis, Appropriation, And Ableism: So Here’s What You Missed On Glee. Do you think they really are using the autism community for ratings? Is this really what our society has come too? I hope not. I really hope the writer did not understand.

Here is an excellent summary of different views in the autism community Debate Heats Up: Is Glee Making Fun of Asperger’s? | Child Mind Institute. There are people within the autism community who do not understand Asperger’s and there are professionals like Allen Frances who make things worse with this What’s A Mental Disorder? Even Experts Can’t Agree : NPR. Is it any wonder that girls on the high-end of the autism spectrum do not get the support and understanding they need?

Here is part of a comment I left on a blogger’s post this morning, “The news media, celebrities and others fight for the rights of sexual orientation, color, religion and even more severe forms of autism and other disabilities including Down’s Syndrome. Most people know what Down’s Syndrome is and most have heard and some are even getting that sexual orientation is not a choice for many. Yet even members of our family fail to understand my daughter. I have left churches that condemned other religions or those who petitioned against same-sex marriage so while your assumptions are valid, you made a leap that missed the mark when you assumed ‘tolerance has to be tailored to fit YOUR PARTICULAR disability or challenge.’” I speak out about injustices related to Asperger’s because people with a diagnosis of Asperger’s are a minority within a minority and girls with the diagnosis are even more of a minority. I speak out because the diagnosis is relatively new (1994), and it will no longer be used in a couple of years therefore, it is misunderstood more than most. Taking such a vulnerable group and making any type of joke at their expense is just wrong.

Please join my e-mail campaign to make a positive change if you agree with me. Find out how in my previous post Glee Needs to Apologize to Autism Community for Recent Episode.

Gratitude for First Television Interview 27

Delightfully Different Book CoveI awoke shortly after three AM to get ready for my first television interview at one of our local news stations.  I was nervous and afterward I thought of other things I should have said including mentioning what a broad spectrum autism truly is, yet despite this and having a bad hair day today of all days, I survived.  I do ask that you keep in mind that I only had two and a half minutes to talk and believe me when I say it went by fast.  You can view it here.

Insightful Book Giveaway for Autism Awareness 28

I reviewed The Uncharted Path: My Journey with Late-Diagnosed Autism by Rachel B. Cohen-Rottenberg.

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Rachel Cohen-Rottenberg’s book is an insightful gem that gives us glimpses into her life from early childhood to adulthood showing decades of struggles before she is diagnosed. She survives her possibly, autistic father’s harsh, abusive temper and her mother’s controlling ways. Elementary school’s social challenges are overcome by the game of baseball and being a “tough tomboy.” High school is harder as she sees herself “outside the social bubble,” yet again, until she finds her niche. This time it is her gift for music along with the ability to mimic others that saves her. Rachel acknowledges that analyzing social situations and figuring out human motivations has become a favorite pastime that along with list making is a survival strategy.

She continues to use these strategies through her college and graduate school years where she develops severe insomnia. She manages this with medication and Rachel goes on to have a successful career as a technical writer. She meets her first husband at a company softball game; they marry two years later. Rachel joyfully becomes a mother two years after this. Once again her organized lists and determination help her be a good parent while working around an inability to take part in loud and crowded activities with her daughter. Rachel continues to do well even homeschooling her daughter while working from home.

However, the effort it takes to overcome abuse from her childhood, ignore her sensory issues, and work at social situations finally takes its toll a few years after she divorces and remarries. Increased sensitivity to her environment causes a temporary home bound status while she and her husband strategize to find solutions. Rachel’s determination again pulls her through this, and she finally reaches a place of acceptance of who she is and becomes an advocate and inspiration for those on the autism spectrum.

Giveaway:

The winner will receive a copy of The Uncharted Path: My Journey with Late-Diagnosed Autism by Rachel B. Cohen-Rottenberg.

The book is available from Amazon.com.

Due to postal charges only United States residents may enter this contest.

Rules for Entries:

  1. You may leave a respectful comment on this post for one entry.
  2. Starting on April 15, 2010, you may mention this post and S-O-S Best of Best Book Reviews and Giveaways http://tinyurl.com/3pzn135 on Twitter and either include @dswalkerauthor in the mention or send me a message proving you did this for two entries.
  3. You may like my Facebook Page, Delightfully Different and mention S-O-S Best of Best Book Reviews and Giveaways begins April 15th at Help! S-O-S for Parents while indicating your interest in this book for two entries.
  4. Post comments at all three sites to receive ten entries into the random drawing.
  5. All entries must take place before 12 midnight Hawaii Standard Time on April 30, 2011 to be eligible to win.
  6. At least one of your comments must include an active e-mail address so I can contact you if you win.
  7. If I do not have a way to contact you or I do not hear back from you within three days, you will forfeit your win and another winner will be chosen.
  8. The winner will be announced on May 2, 2011.

As soon as the winner’s information is received, I will email their information to Rachel B. Cohen-Rottenberg, who agreed to donate a copy of her book and mail it to the winner.

Disclosure/Disclaimer: I reviewed this book from a copy I purchased through Amazon.com.  No compensation, monetary or in kind, has been received or implied for this post. Nor was I told how to post about the book!

Thank you to all those who entered this contest.  The winner is Melody of Life’s Twisted Stitches!  Melody I sent you an e-mail tonight.  Please respond with your mailing address before May 5, 2011 to claim your prize.