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Autism Awareness Month

April 1, 2013

Its April.  Which is Autism Awareness month. Apparently the community is having a large debate over awareness vs acceptance.   I think its right up there with is my kid autistic or do they have autism?   I saw a blog post by a woman with Asperger’s that I follow and was very interested in reading what her take on this month is.  I am speaking for autism as a parent of a child with autism not as an autistic adult and I think that both sides of this coin present interesting arguments.   This is a quote from her blog:  ‘Because today is a special day. It’s the beginning of an entire month, during which a small part of the world does its best to convince the rest of the world that people like me are a plague on this earth, and that they should be “aware” of us, so that they can make sure we don’t cause too many problems. Somehow this doesn’t seem quite right. But there’s also an amazing small slice of the world that spends April rallying to show the world that people like me, we exist. And we’re not going anywhere. And the world is a better place because we are a part of it, because every human deserves the respect owed to them by other human beings, and has something to bring to the world. That “normal” is completely over-rated, and that those of us who fall on the other side of “normal”, are just as awesome and valued as everyone else. And that is Autism Acceptance.’   Her words made me think a lot about what I was already thinking a lot about today and why I had not yet posted anything.

First,  I think that the community needs to recognize that there is a HUGE difference between someone who is able to go to college and get a degree, pursuing a life where they will live by themselves and seek their own happiness. Regardless if that happiness fits what everyone else thinks it should look like.  Compared to a parent who is faced with a child who will forever be reliant on them, non verbal or otherwise.   Yes they may be seeking out their own happiness also but I do think there is a difference.  A big one.  I’m not sure how anyone can argue that, but I’m positive they are out there arguing away.

 

To me, awareness month is raising awareness of warning signs for those who have young children so that they STOP relying on uneducated physicians, educators, friends, family and the like and start saying ‘that looks like it COULD be Andrew, I should go get someone to take a closer look at the things I’m seeing’.   It is also to open the eyes of people who are not living autism day to day to what our lives look like.  The beauty and the mess, the beauty within the mess.    Some of Autism at our house isn’t pretty.  I can’t help that.

 

I’ll start out by saying that I do struggle with how to view this situation. I’ve been a parent of an autistic child for four years now, we are one and a half years past diagnosis, seven months past diagnosis for child number two.   I struggle between the acceptance and changing.  Between what’s holding them back and what’s holding me back from accepting them as they are.   I struggle to make decisions to get them help or leave them alone.   Even the people who are best educated on autism do not know my child.  If you’ve known one child with autism, you’ve known one child with autism.   I am doing the best I can by my kids.  To prepare them for the real world and living independently.  Whatever they choose to do with their life, I want to give them the skills to seek that out.  It does not need to be college and a family, but I never want them to want to do something, accomplish something, be something and fail because I failed to get them help at the key part of their lives.

 

At our house, we have Rett, who is 4.5.  He is diagnosed with Autism Spectrum Disorder and Auditory Processing Disorder.  He also has a speech delay of at this point, probably over a year.  I would guess he’s talking around a 3 year old level.   Rett is high functioning autism.  He receives 10 hours of ABA therapy a week (another highly controversial topic) and 2 hours of speech therapy a week.   We also have Evie, who is turning 3 in June.  She is diagnosed with Autism Spectrum Disorder and I truly think she also has Auditory Processing Disorder and she also has amblyopia and wears glasses to correct that.   She has probably a 6 month speech delay.   I am learning quickly the large differences between how girls and boys present.  Here are Evie’s autism signs.

 

So without further ado, this was our night tonight. A little snapshot of what autism looks like from our point of view.  Its a wonderful view.

 

post1

 

Today was a warm day in Atlanta.  So we headed to one of our favorite pizza places to eat.  Its outdoors and has a nifty fountain.  The kids love it and its a nice treat to eat outdoors.  We pulled in and I was talking about how this was very early to eat in Atlanta and nobody was there yet.  Evie promptly asked if we were going to eat with Sebastian.  To her ‘Atlanta’ was processed as ‘Sebastian’.   Then we got out of the car with my purse loaded down with camera, sippy cups, toys and hanging on to Evie’s hand.  She was carrying her ‘nasty worms’ which is how she hears ‘magic wand’.  Once we got to the restaurant and sat down, Evie was busy dipping her magic wand in the fountain and trying to drink it.

 

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One of Evie’s sensory issues is oral seeking. Pretty much everything goes into her mouth.  She does it without thinking most of the time.  Like after the tenth time we told her to NOT put the magic wand in her mouth.  She startles like.. oh yah.  We get her to sit in her seat and give her the Littlest Pet Shops I brought.  She looks them over and each one goes into her mouth.  Then she starts playing with them.  Making them talk to each other and run around the table top.

post3

 

The first thing Rett does when we sit down is take his shoes off.  This is more of a recent thing where he can’t stand to wear shoes and socks.  He actually left his socks on.  He’s excited for flip flop weather I’m pretty sure.   He loves the noise the fork makes on the metal chair.

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He asks for his toys and starts playing pirates.  There is a lot of talk of Captain Hook and quotes from Peter Pan.

 

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Daddy was forced into pony kisses.

 

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Pizza got there and Tom cut their slices into pieces.  Rett eats his with a fork to keep from getting the grease on his fingers.

post7

 

His fork turned into a magic wand a few times as he burst into ‘You’re Playing With The Big Boys Now’ from Prince of Egypt.

 

post8

 

Evie refused to sit down.  She announced she loved the bubbles.  She also noticed a newspaper flapping in the wind.  She ate standing up until an ambulance flying by scared her back into her chair.

 

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And showed off her lady like eating skills.

 

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And baby brother was adorable.

 

On the way back to the car, Evie pointed out a trumpet shaped hole in the side walk. It really did look like a trumpet.

 

To everyone else, we looked like an average family.  The kids acted like typical pre school age children.   I have never felt like autism has kept us from doing very many activities.  Maybe that is why my focus is more on early intervention signs and awareness of how different families can look even though both of their children are on the spectrum.

 

We had a good night.  I hope you did too.  Welcome, April.   I’ll be sharing more of my family’s life during this month.  I hope it makes you think a little bit harder about what autism is and what it can look like.

 

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