April 2nd is World Autism Awareness Day…for most of the world. For me, every day is Autism Awareness Day. I have two Autistic children. I don’t discuss it here often, because it’s not what this blog is about. Today, however, it seems appropriate.So I decided to share with you what Autism is, for us.
If you do not know, the chosen symbol for Autism is a puzzle piece. The reason for this is that there is so much still being learned about it, and every person’s Autistic journey is different. Did you know that 1 in 68 children is diagnosed with Autism? Did you know that of those 68, 42 are boys? Did you know that the Autistic community is divided over whether or not it is something that needs to be cured or is simply a different way of being? This, however, is not a post to explain Autism. This is a post to share our journey with you. If you want more info, email me and I will be happy to share what I know with you. Here’s a link to some facts about Autism.
* Being told my son would likely never speak, but not giving up on him.
* Not hearing my child say “I love you, Mama” until he was 6 years old.
* Sleeping on the floor in order to block the front door because my son did not sleep through the night until he was seven and had elopement tendencies.
* My daughter having bald patches on both sides of her head at age 3 because she ripped her own hair out during meltdowns.
* Being unable to make a U-Turn in my car for a full year because it caused a huge meltdown every time.
* Having to struggle to hold her still while she beat her head into the floor repeatedly on a daily basis, for years.
* Being stared at and judged by other parents in public as a result of said meltdowns.
* Having a sick child who can not explain to you where it hurts.
* Phobias and anxiety.
* A little boy who, despite being unable to talk, could dismantle and reassemble my stereo at the age of three.
* A little girl who’s emotions are beyond her years; and watching her try to navigate them causes me both sadness and immense pride.
* My children having almost no friends.
* My children being best friends because they get each other.
* Having therapists in our home for 15-30 hours every week helping the children.
* Life not being at all what I planned.
* Parental guilt.
* Becoming a far better person for them than I ever imagined I could be.
* Being over protective.
* Learning about Gluten Free/ Caisen Free diets so that my son could finally stop being in pain from food.
* Fighting for their rights in school. All the time.
* Homeschooling my son for a whole year because our school system is so broken, they could not keep him safe.
* Being harassed and threatened by the same school system, simply because he was money not being earned for them.
* Helping my children learn how to navigate their way through a world that is just not made for them.
* Finding the strength to let them go out into the world, not matter how scary it is.
* Truly learning what unconditional love is.
Personally, I do not believe my children need a cure, and I do not endorse many of the new, expensive and risky practices out there for Autistic children. We do extensive ABA Therapy with some wonderful therapists in our home. It has taken a very long time, but the children have made massive strides. I have also learned how to better parent them by being an actively involved participant. When my son was first diagnosed about five years ago, I was so overwhelmed and under informed. I didn’t even know where to start. The maze of bureaucracy is dizzying. I was able to navigate it, and now I want to help other families as well.
If you have an Autistic child and feel overwhelmed, don’t know what your resources are, or even want to learn about the GFCF diet, please reach out to me. I want to help you.
I would also like to take a moment to shine a light on a few organizations worthy of support. The first is Autism Speaks; I am such a fan of their work. You can support them by buying some of the really well designed items that Sevenly is currently carrying.
|roughly 25% of people with Autism have little to no speach|
Stella&Dot is also raising money to support a wonderful foundation, the Holly Rod Foundation. This is not their first partnership and I hope it will not be the last. All net proceeds are donated to the foundation.
|you can buy online, or host your own trunk show|
That is our story. This is our life. This, is Autism.