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April 3, 2018

Reflections on World Autism Awareness Day - We Need Understanding Not Just Awareness


Autism is Not just a Day for Awareness . . . It's a Lifelong Journey


Each year as World Autism Awareness Day approaches I get numerous messages, emails, Facebook and Twitter posts and other reminders that I need to LIGHT IT UP BLUE on April 2.

I'm asked to go to Home Depot and buy blue lights for my porch and make sure that I wear my Autism Awareness or Light it Up Blue shirt. To me, it seems like the day has turned into another annual right of passage on social media - just like posting the first day of school photos, Halloween Trick or Treating Photos, Prom Photos, Homecoming you name it.

In other words, it has become another social media craze.

Don't get me wrong, awareness is great, and I bought my blue porch lights for the first light it up blue day. We light it up blue everyday and thanks, Home Depot, they still work.

Awareness means that more families living with autism have more programs and options available. Nevertheless, many families still do not, and they still face daily obstacles that are difficult, if not impossible to overcome.

And that is why I feel the need to emphasize that:


WE NEED UNDERSTANDING, NOT JUST AWARENESS!

1. We need other parents to understand when we cannot or chose not to attend birthday parties, movies, dances, dining out and other special occasions. Please don't exclude us or stop asking. Just understand if we can't go or if we show up for only a few minutes.


2. We need relatives to understand that we cannot always attend family gatherings, weddings, holiday dinners and family vacations.


3. We need schools and other parents to understand that our children may be on special diets and CANNOT eat food that we did not prepare.


4. We need the whole world to understand why, most of the time, it is easier to just avoid all of these events and live in the world we created for our autistic children. Our house, our family trips and our lives are like a moving plastic bubble in which we control the elements as much as we can.


5. We need the world to understand that we love our autistic children so much that we will do anything we can to help them and that we will continue to do so forever. Our children are special and so incredibly wonderful in their own ways.



I started this blog about Special Needs Parents & Autism Awareness nearly 15 years ago and I confess that I do not blog often enough.

I only blog when the muse hits me, or rather when I have the time to sort out my thoughts. Blogging is not my day job. I cannot afford to be a stay at home mom, but I have worked my career around my autistic children.

It is not easy raising an autistic child, much less two or more. Moreover, we did not receive that diagnosis until my oldest child was 9 and my youngest was 3. We had very few services available back then, but we had already learned that we could only survive as a family if we limited our world to those who understand.

We found schools that could and would accommodate our children's needs. We found a few close friends that did not judge us for participating in activities when we are able. We started taking family vacations and stay-cations with just the four of us. That's how we roll!

We are founding, contributing and/or annual members of all of the local attractions - Georgia Aquarium, Atlanta Zoo, Fernbank Museum and Wild Adventures, The Atlanta Botanical Gardens and Callaway Gardens to name a few. If we have a free day or weekend we can go for just an hour or two.

We regularly visit Georgia's State Parks, either for the day or overnight. Exercise and mother nature are great for the soul and for those on the autism spectrum.

We are very blessed. Our children have come leaps and bounds from where they started, but their journey and ours will never end. Autism is a lifelong journey and we need the world around us to understand!

Nianya

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