Tuesday, June 18, 2013

Charity Tuesday: Autism Speaks

Hello Everyone,

As we all know, spotlighting charities and worthwhile causes is important to SR.

As a group, Elli, Coco, Sere and I are also dedicated to promoting these endeavors. Therefore, we are happy to share a weekly series of posts in order to take a more in-depth look at the various charitable organizations highlighted by SR. You can find a complete list of these charities on our blog by clicking on the "About the Charities" header.

Today's post was submitted by Efrat and we thank her for sharing her personal experiences with Argyle Empire.

We hope you will find the information in these posts informative and educational.  If you have a particular cause that is close to your heart or you have personal experiences with any of the charities we spotlight, please feel free to contact us about it.


Autism Speaks

Mission Statement: 

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

Autism Speaks. It's time to listen.

Website: www.autismspeaks.org
Twitter: @autismspeaks

My son was diagnosed with Autism about 2 years ago. For a parent, this is a devastating condition, and extremely heartbreaking. Many of you are parents, so you can imagine how heart-wrenching it is when your own child doesn’t communicate with you, is lagging in development, and his/her future as an independent adult becomes questionable. The parental worries of parents to an Autistic child are very different, and stretch far beyond those of parents with neuro-typical children. It’s a situation that is inherent, obsessive and all-consuming, and exposes the entire family to immeasurable stress. The life of such a family revolves around that child, and in most cases warrants the adoption of a completely different and demanding lifestyle that includes a different diet, extensive therapy sessions, adaptive speech, advocacy, bio-medical issues, dealing with insurance… the list goes on.

It’s devastating. So many couples I know have divorced due to the stress of this harsh lifestyle. In fact, the divorce rate among families with Autism is more than double that of the national average.

It’s ironic, because these children are so incredibly special, but rarely viewed as such since they can’t always express themselves in language – some don’t talk at all, and some just don’t know what to say or how to say it. They are exceptionally bright and have so much love to give, with absolutely no judgment – something that most of us have shied away from, simply due to the way we have been socialized.

One significant emotion that many Autism parents suffer from, is how guilty they feel about their child’s situation – that they might have caused this condition, haven’t prevented it in time, bad genes... it’s haunting! And, guilt can be a dangerous thing. There’s nothing positive or motivating about it. It doesn’t stem from love, but from a sense of fear, belittlement and self-punishment. And it’s possessive too - you simply cannot get rid of it, and very quickly takes ownership of your soul.

For 2 years, I felt guilty; like I was responsible for my son’s situation, like I’ve damaged my own flesh and blood. And I beat myself up for that, while at the same time doing everything I could to prove that my son could be “fixed” (with therapy, bio-medical treatments etc.) – all so I could try and rid myself of this guilty feeling that relentlessly tortured me.

When I started reading Gabriel’s Inferno, I didn’t know quite what to expect, but I felt very attached to the words and the storyline.  Deep inside, I knew there was a reason why this book found me. Call it fate, I suppose, but at the time I couldn’t really explain it.

I did, though, relate very well to Gabriel’s character – the motivated, career-oriented individual that couldn’t stand mediocrity, and who felt he was a sinner beyond redemption. That was exactly how I felt – tortured by the thought that I was the one to bring Autism upon my son, and because of that, I was doomed to feel guilt my entire life for a sin I must have committed.

As my reading progressed, I realized there were also many similarities between Julia and my son – the strength, the humility, the innocence and above all - the pure soul and the endless love she has to give.

The more I thought about it, the more I could personally relate – Julia and Gabriel were an allegory to my son and me, as we too share a very special bond forged by a different kind of love than Gabriel and Julia enjoy, but one no less powerful.

In one of SR’s interviews, he said that “this society lives on two major lies – one, that you can be perfect, and the other that your imperfections will damn you to a miserable life. But, we all have our faults and imperfections, and the key is to overcome those with grace; grace being a key element to redemption.”

These two lines really hit home for me, and that’s when I understood what that special connection with the book was. With this quote and throughout the course of my reading, I’ve realized that love in itself has the power to heal, and redemption for me was possible.

So when I let go of my false sense of control over my son’s condition and started to focus on the unconditional love and affection I gave him (and gave more of it), a miracle happened – he began to flourish! He started talking more, becoming more social and a lot more aware – as if a part of him was healing from the Autism!

At the same time, I started feeling less and less guilty, and with every passing day, I regained a bit of my life and vitality back.

It’s been a journey, and took some time, but I’m a different person now.  I must say that I don’t feel guilty anymore, and we’re both a whole lot more peaceful and happy – as individuals and as a family.

Gabriel’s Inferno has been a very substantial part of this healing process. I feel I owe a great deal to SR for writing a beautiful story with such a powerful message, and one that to me, was a mirror to my soul and my relationship with my son. SR taught me through his books that there really is a way to heal, and that way is through love.

I was even more excited when I suggested to SR that he support an Autism charity and he so kindly agreed to support ‘Autism Speaks.’ Every time ‘Autism Speaks’ is highlighted, I am deeply honored, and also very happy as I know this awareness will have a ripple effect that will make the life of my son and other children with Autism a whole lot better.

My son is a lot better now. By no means is he equal to his neuro-typical peers, but he’s getting there and I’m seeing a light at the end of the tunnel. I now know he’ll be ok, because all he needs is much love, support, compassion and understanding.

So, thank you, SR. Thank you for being the kind soul that you are; for keeping us all intellectually stimulated, and for encouraging us all to be our best possible self.

And to all the Autism parents (and to everyone, really) – Love! Love with all your heart, as it will heal you from the inside out.

The way I see it, with 1:88 children on the Autism spectrum (some say it’s actually 1:50 – that’s 2%!), and with SR’s 15,000 followers, there are bound to be about 300 that would immediately relate (but this is my analytical side talking ). If only one parent reads this and finds hope, I will be very grateful.

Thank you so much for the time to read this. It means a lot.



MissPat said...

With one phone call three of our five family members were diagnosed with some form of the Fragile X condition. My autistic grandson, but not his twin brother, both my daughter, and my husband all had to grapple with the evolution of this genetic nightmare. Those of us not diagnosed had to grapple with it as well, and some have handled the news, and the ramifications of it, better than others. Like you, SR's story brought me comfort and resolve, and he personally gave support to highlighting Fragile X. Hold yourself to a standard of (God's) grace, not perfection. God will lovingly take care of the rest.

Shameela. said...

Thank you Efrat for sharing your touching story. I don't have children so I can't personally relate to your pain (and bravery) but you've certainly reminded me that I take too many things in my life for granted. Thank you for opening up my eyes to the difficulties parents of children with Autism face. I have an immense amount of respect for you. I particularly liked how you compared your relationship with your son with that of Gabriel and Julia's - really beautiful. I'm glad that I now know about Autism Speaks and how important their work is.

I'm still fairly young but I'm very much inspired by your story and how compassionate you are as a mother :)

TerrytheNurse said...

Fabulous post, Efrat, and so glad you shared your story of the most adorable little boy and your loving relationship with him. I am always touched and gratified to see how these two (soon to be three) books have such an amazing effect on people's lives and relationships. You are one of the kindest and sweetest people I've "met" and I will always be here to support you.


Blogmaitresse said...

Thanks Efrat and AE for highlighting what is a deeply misunderstood condition. Like many neurological conditions there are no absolutes. A person can register from just on the autism spectrum to severely affected. It's such a variable condition. My son was tested as being 'borderline' autistic (bear in mind this was in the mid eighties.)

He was a high academic achiever but had problems with socialisation skills. We were told this was common in boys and that little could be done. Thankfully, things have changed. Wishing you and your lovely son all the love in the world Efrat xxx


Jdt said...

Thank you Efrat for sharing your story about your wonderfiul little boy. My best friend has also a boy with autism and unfortunately as you wrote she became a single parent after the divorce. He is a talented young man with a beautiful name Gabriel. The unconditional love his mother is giving him keeps him going on.
Your love is the most valuable thing you can share with your child. Unconditional love as you say has power to heel. It hurts almost to realize how much SR's words and the immensely kindness can give us in so many different ways.
You found insight that your little boys condition is not your fault. You are a fantastic and strong mom who loves his child unconditionally.
Thank you for sharing your touching story and make us aware the difficulties parents of children with Autism face every day. Wish you and your little boy all the best and love.

Unknown said...
This comment has been removed by the author.
Unknown said...

Thank you, Efrat, for sharing your beautiful story. SR has had a positive affect on many of us. In his book Gabriel says to Julianne, "how are you not an angel." I believe SR was your angel with his compassionate words that has helped you heal and your son begin to flourish. God Bless you both.

~Elli~Iris~ said...

Thank You Efrat for sharing your personal story with us.

ASD touches me daily in a different role as an Early Interventionist. I work with children from birth to age 3 with special needs and their families. I am often one of the families first contacts if their child is referred for special services even before a diagnosis. Our program does often give Autism Speaks as a good online resource to connect with other parents and programs outside of our program.

Children living with ASD have difficulty connecting to our world and do so in a different way as they battle with Communication, Social, Self-Help, and Sensory delays and differences while often excelling in other areas.

It is a different world to travel. I often share "Welcome to Holland" which is an essay, written in 1987 by Emily Perl Kingsley. This poem was written about having a child with Down Syndrome, but the journey can be similar. You can find it many places but it appears here on an Autism website:


I hope you find it as inspiring as I do.

<3 Iris~Elli

Lady Coco said...

I truly have no words for this. It's such a beautiful writing; it shines love and compassion right through it. Thank you for sharing your son and your story with us, Efrat.

~Elli~Iris~ said...

Some asked so here is the whole poem here:

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

Efrat Noy said...

Thank you all for your kind words of love an encouragement.
I am very grateful and honored to have educated and touched so many, and your reactions were way more than I expected.
Thanks also to Iris for posting and tweeting this beautiful poem! It's very true and depicts the feeling of a parent to a special needs child very well.


Neta and Edan said...

Efrat thank you for your beautifully written and touching article, I was really moved by it. Your son is so lucky to have you as a mother. He's such a kind hearted amazing child and I look forward to watching him continue to grow. I'm so happy for you that you found a way to move past the guilt and reach a better place. you're amazing!

Unknown said...

I myself am a mother of a boy with Autism so this article instantly caught my attention. I know the guilt you are talking about as I felt it too, and to some extent still feel it, I think it is something I will carry with me for the rest of my life. My son is now 6 years old and has just completed 2 years in an ASD unit but he will be attending a mainstream school in September and I cannot express how proud my husband and I are of him. He is so compassionate and loving and so kind to his younger sister and brother. I know my heart broke for him the day I found out about his condition but his condition makes him the special and wonderful child he is today

Anonymous said...

Efrat, this is a truly inspirational and beautiful post!

Knowing personally both you and your son, I can only bestow the kindest of words on you both.
Your son is a wonderful kid: very talented, smart, creative, introspective, communicative, joyous and loving, not to mention extremely handsome. :) While he may be diagnosed with autism, he is not far behind his peers and whatever gaps there might be, I'm sure he will overcome them.
You are an amazing mother who would stop at nothing to give her kids the best possible future. While it may have manifested itself through guilt, your drive to take care and help your kids in every possible (and sometimes impossible) way is an inspiration to any parent. You are definitely right about what you say on the issue of guilt, and it shows that both you and your son have opened up and became happier once you came to this realization. Always remember that what your kids need most are happy parents who love them and are there for them. I trust you will be able to let your son be the kid he wants to be while enabling him to have the confidence to continue growing and learning. I am very optimistic about him.

Keep up the good work!

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