Helping Fund the Dialogue to Improve Our Children’s Future

Ever feel like you are different, but you lack the sensory sensitivities and musical or artistic gifts of your child on the spectrum? Ever have a bad case of “foot in mouth” syndrome? Do you sometimes feel like you do not belong in either the neurotypical world or the autism world? Maybe someone called you a half-aspie and you decided that is not a bad thing! That’s a new term coined by Laura Nagle, self-described as professionally autistic and an autism advocate, and I’m the one she called half-aspie.

Truth be told that term probably applies to most parents of children on the autism spectrum. Those of us following the dialogue within the autism community know that we are not a cohesive community yet, although many on working towards this goal. We need adults like Laura to help educate the community at large so the world will hopefully be a better place for our children as they become adults.

Laura states on her home page, “True awareness requires some understanding of what autism is…I wish society to go beyond acceptance and on to appreciation.”

Laura found me recently on Twitter through the #youmightbeanautismparentif and #youmightbeanaspieif links. You can follow her @HardAspie, where she shares her hard-earned aspie insights. However, Laura’s story is also being made into a documentary that will add to the autism dialogue and hopefully help the younger generation like my teenage daughter. The short video explains this better than I can, so I hope you will watch it and decide to help fund this.

Laura needs to raise the money by the middle of this month. Consider it as a Christmas gift to our children’s future. Go to Vectors of Autism: A documentary about Laura Nagle — IndieGoGo to contribute.

If You Know About This Twitter Hashtag 4

#youmightbeanautismparentif, You might be an autism parent and even if you aren’t I hope you’ll keep reading and share the tweets on Twitter and share this post on Facebook, Google Plus, etc.

#youmightbeanautismparentif you miss those who decided to stop blogging.

#youmightbeanautismparentif your heart breaks for all the times your child has been misunderstood &/or mistreated.

#youmightbeanautismparentif you have been misunderstood too.

#youmightbeanautismparentif your wish for the future is a kinder, more understanding and supportive world.

#youmightbeanautismparentif you don’t have time for pettiness because you spend your time repairing damage done by misunderstandings & meanness.

#youmightbeanautismparentif your heart breaks because your child did not have support from family, friends or professionals until she was older.

#youmightbeanautismparentif your focus is on educating others so they avoid your mistakes.

#youmightbeanautismparent if you see sensory sensitivities and traits of autism in characters in novels and immediately recognize them as such.

#youmightbeanautismparentif you added more favorites to your Twitter profile in the last two weeks than in the last year including the following:

@spectrummymummy #youmightbeanautismparentif you’re doing the toughest, most rewarding job of your life- and you can never, ever go on #STRIKE.

@anne_barbano #youmightbeanautismparentif you have a beautiful singer in the house!

@spectrummymummy #youmightbeanautismparentif your child doesn’t just march to the beat of their own drum, they dance to their own symphony.

@fcsfinest #youmightbeanautismparentif you’ve felt like reciting this quote, “Autism is not a tragedy…ignorance is.”

@diaryofamom #youmightbeanautismparentif you know that autism is one word, but there is no one autism.

@diaryofamom #youmightbeanautismparentif the next person who tells you that God doesn’t give you more than you can handle might want to duck.

@bradsdad #youmightbeanautismparentif you think the world might be a better place if we all were more like our aspies!!

@AutisticSpeaks #youmightbeanautieif you wish people weren’t so hell-bent on curing you and would just let you be who you are!

@AutisticSpeaks #youmighbeanautieif “But you don’t look autistic” was old, like, the first time!

@outoutout #youmightbeanautieif You were frozen out of yet another ‘parent support group’ because you can’t fake NT if you tried. 😦

@SarahMPottratz @msoricel #youmightbeanaspieif #youmightbeanautismparentif you have learned the letters after the name don’t make them an expert.

@BobbiSheahan @manyhatsmommyMI @RaisingASDKids because they started the whole #youmightbeanautismparent thread and they deserve their own #ff for that! ❤

Join in the fun if you haven’t already! Those of you who are not parents of someone on the spectrum, but who still care to learn more can google all three.  People are continuing to add to them, so click on the links to learn more.

Mahalo to Jenny @manyhatsmommyMI who blogs at Many Hats Mommy for starting this and for creating a link for those who want to share the fun on their blogs and to Elise Ronan @RaisingASDKids who blogs at Raising Asperger’s Kids for creating the Twitter hashtag that has kept it going.

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)

Thanksgiving Gratitude 12

Last year I posted about a family tradition at our house of going around the table and telling each other the things that make us thankful. There are things I had hoped for this year that have not turned out quite the way I had anticipated. Clouds have descended over our home at times during the past year as my regular readers are aware, but all hope is not lost.

I still have to be careful as my back continues to heal from my fall in May, but it is getting better and I am even able to go without my brace most of the time now. I do still use my ice and I still occasionally use Advil, but there is hope. The clouds are less threatening and I am beginning to see beauty in simple things that I did not enjoy previously, like vacuuming my house.  I know I know, that sounds crazy, but when you have been unable to do simple things, former chores can actually be a pleasure. Your views change!

There are still things that I hope and pray will change including more joy and kindness in our world, and especially in the lives of the victims of bullying and in the lives of those who have lost loved ones to bullying. I want a society that gets why the effects of bullying are long-term and how much love and support the victims need and even how sometimes they need space and time to heal. It is about what is best for them. That is what really matters most. If they cannot handle family gatherings, their wishes need to be honored not questioned. Keep them in your hearts and prayers, but realize this is not about you. They are what matters most right now.

I remain thankful for everyone who works to help, including a member of the Coral Reefer Band who is helping. Jim Mayer, writes, produces and performs children’s music to help teach values, help develop character,  and to promote understanding of complex emotions and dealing with bullies. To learn more, read On Bullying and Suicide: A Message of Hope, Help from Coral Reefer Band Member – MarketWatch.

Today I saw this rainbow which reminded me that there is infinite hope and there are reasons to be thankful. I am thankful for my family and friends, for everyone who has helped me this year including Tony Attwood, for all of my fellow bloggers, and for those who support me on Twitter, on Facebook and at Linked In, especially the new friends who I have met this year and who have helped me just by being here. Some have posted reviews of my novel and others have helped in other ways. I also joined a group of bloggers at Danette’s Best of Best on S-O-S blog this year and found another supportive group.

The ones who mean the most are listed under helpful info and in Special Peeps from the menu above. I am especially grateful to Robert, who bravely shared his bullying story on my blog. I am also grateful to Bobbi, who shared two wonderful posts recently. I have another wonderful guest post planned for Friday from Lydia at Autistic Speaks. I hope you will stop by and support Lydia.

It is another positive post I assure you. I have learned too few can handle the bullying stories so I am not going to pursue more of these at this time although I will still address the issue on this blog.

Wishing everyone in the United States a very Happy Thanksgiving and all of my friends around the world a wonderful weekend and Happy Holidays!

Mahalo for all of your support,

Sue