Our journey in the Autism Spectrum

Posts tagged ‘Autism Community’

Forget the Hate. Celebrate! ~ My Autism Awareness Day Post 2013

Every time I think about the subject, or see a blog post, or article, or discussion about it I immediately become EXTREMELY anxious! Like an I-can’t-breathe kind of anxious. Folks within the autism community are STILL “picking sides”. I generally make a run for the hills to avoid any possible confrontation with it.  I feel as if I could easily hyperventilate just trying to write this post.

A year ago, I wrote this.  And here we are again. It’s April. Autism Awareness Month.  Sadly, what I wrote last year still feels very true to me today.  I’m disappointed. It makes me anxious and sad and tired.

I.just.don’t.get.it.

I will support Autism Speaks, the Autism Society , Asperger Syndrome and High Functioning Autism Association (ASHA), the National Autism Association, LifeSkills/TouchPoint Autism Services, and many other autism organizations.  I want to support and promote ANY and ALL of the wide SPECTRUM of organizations and individuals that are working positively toward helping ALL others in this great big, and very diverse, spectrum of AUTISM. We need awareness at all levels of autism so we can promote compassion and understanding for ALL on the autism spectrum, no matter where on this spectrum they may be! It hurts my heart to think that some in our “community” still can’t see that.

Perhaps I should be glad that I don’t get the hate. I’ve got no room in my life or in my heart for more negativity and bitterness. April is Autism Awareness Month and I know that most of my readers are highly aware of autism every damn day, as am I. In 2012 I followed up my post linked above with this post.  And this too still rings true.  Positively so.

Because of all of this I’ve decided that I want to use this month of awareness to CELEBRATE autism. I will celebrate my son, his differences, his challenges, and the amazing progress he continues to make! I will celebrate our educators, counselors, therapists and physicians who help support and encourage us along the way! I will celebrate our whole family for rising up and overcoming the challenges that autism often brings into our lives. In doing this perhaps others, both within the autism community and those outside of it, will learn by our POSITIVE example. And really, isn’t this what we want to accomplish all year long?!?!

Welcome to April! Celebrating Autism Month!

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My Official World Autism Awareness Day Post (and it ain’t pretty)

[Ed. Note: Alternately titled:  Cant’ We All Just Get Along?!?]

April 2, 2012. Today is World Autism Awareness Day.

Our house lit up blue last night and will continue throughout the month of April….and probably beyond as we did last year. All of our family is wearing blue with puzzle pieces today.  Lucy and I even have our fingers and toes painted blue. I will wear my autism awareness jewelry that I have acquired over the last year. Ultimately, today is not that much different for us than any other day.

But I wanted it to be different.

This year Henry actually understands that HE has autism. His little sister, Lucy, understands that this year as well.

I wanted it to be so much more for us this year. I have felt an urgency to DO more. But at the same time, I’ve been overwhelmed by it all and in turn unable to do much of anything. Most of all, right now I feel ANGRY and it’s not because my son has autism.

It’s upsetting for me to hear folks in the autism community arguing amongst ourselves about what causes  autism, treatments and therapies, which organizations to support or not to support. Actually, I’m pretty pissed off about it.  I’m sick of hearing the bickering, the ugly words exchanged. Who is right and who is wrong. Banning folks from Facebook pages, loudly “unliking” a page because we didn’t like something that was posted there.  It’s turning me off. And when that happens I want to shut down and walk away.

Inside me I am screaming at the autism community.

Can’t we all just get along, people!?!?! Don’t you see that we are ALL correct?!?! That there is no right and wrong? We’re in this TOGETHER and if we don’t stick together then where the hell does that leave us?

“Sticking together” doesn’t necessarily mean we all have to agree on everything.  There are a lot of folks in the autism community saying things that I don’t believe in or agree with. But, dammit, if their kid(s) have autism or if they themselves have autism (or sometimes BOTH!) then can’t we support them in their right to say what they want and to support who they want?  We don’t have to tear each other down or tell them we think they’re “wrong” and  that we’re “right”.

It shouldn’t matter that we all may feel differently about HOW we think our children developed autism or that we may have different ideas about “cures”, “treatments” and “therapy”.

Whether you believe the CDC’s recent numbers regarding autism or not, whether you support Autism Speaks or The Autism Society of American, or perhaps a local organization closer to home, does it really matter when it comes to our kids?

As Jess at Diary of a Mom says, “Autism is one word but there is no one autism.”

Nor is there one cause, one cure, one treatment, one therapy. There is no one color, one religion, one culture, one belief…

We should each be able to  promote OUR autism in any way WE want! And we must be respectful of  OTHERS that are doing it in THEIR own way! We should all be able to light up our homes in any flippin’ color we want! Or don’t light it up at all!

In the autism community we shout at the top of our lungs for others outside the community to be aware of autism, be aware of the differences in those on the autism spectrum. We want the world to accept those differences!

How about we practice what we preach, people?!? Let’s show the world BY EXAMPLE, shall we? We don’t always need to agree with everyone on every idea or issue. But we DO need to be RESPECTFUL, both in our support or in our disagreement.

Today is World Autism Awareness day. April is Autism Awareness month. I want MY autism community to RESPECTFULLY support however we EACH choose to promote and support OUR own autism. THAT is what makes us a true COMMUNITY.

A “New Year” Forever Changed

Exactly one year and a day has gone by since I posted So Done with 2010! on January 1, 2011. We were ready to move on while we looked forward to a new year of good and positive things to come.

The very next evening, January 2, 2011 I received a shocking and devastating phone call from my mom that my oldest friend, my BEST friend for many years, my “big brother”, had died that day. He committed suicide. So many lives changed forever.

The day after Scott’s funeral I posted this.

Now. Today. Exactly one year later, I am still heartbroken. Not a single day has gone by that I haven’t thought about him and the family and friends he left behind.

I have been unsure these past weeks of how I could, or even should, post my reflections on all that has happened this past year and what we are looking forward too in the coming New Year.

I will NEVER look to the New Year in the same way again.

This past year we have surrounded ourselves with family and friends and I found many days filled with joy and excitement and hope. Through all of this, thoughts of Scott were always there…just knowing he was no longer here, changed everything. I feel things differently. More deeply.

We will all move on with our lives. It will be hard but perhaps with time some days a little “less hard”. I know I will also move on to experience joy and love and hope even more so because I have learned, or at least I think I have learned, just how precious that experience is.

My New Year is changed forever. And I am too.

The American Foundation for Suicide Prevention (AFSP) needs us too. I wonder what important insight could we, as an Autism Community, provide for the AFSP? The anxiety and depression that a lot of our children experience, especially as they get older. The bullying, the inability at times to navigate our very social world, the isolation. The depression and anxiety and isolation that parents of special needs children can go through. Although my friend Scott’s story is completely different and apart from those in the Autism Community, it’s an interesting thought to me and perhaps a much-needed perspective…something to ponder this New Year.

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