Is it Autism?

I haven't posted many things of late, as it doesn't seem like there is much to write or review.  We've had a difficult time getting back in the swing of therapies the last couple of weeks because the therapists have been sick.   Last week it really threw Nea off that there was not a speech therapy session after she completed OT.  She kept saying "Diana, where are you???!"  Today when she saw her she was so excited!

In general therapies have been going well.  Nea and I are learning together.    For instance, we know without a doubt, that sometimes she needs extra pressure or compression or something of the sort to give her sensory system some feedback.  So now we leave her bike helmet on a table within her reach.  Every once in awhile she will bring it to one of us and say "Hat on, help."  So we help her put it on, and she'll leave it on 3-4 hours as she goes about the day.  That snugness of a bike helmet is like a soft squishy hug on her head.  Sometimes she'll take one of her "friends"  (could be Ernie, or Chika, or Karen) and put it on her tummy and say, "Pussssh".  That's our clue that she's needing some deep pressure to feel like she's put all together and we spend about 15 minutes doing some massage and joint compression to get her feeling right again.  The fact that she recognizes these needs prevents meltdowns.    She doesn't know exactly how to ask, "Hey listen, I'm feeling really whacked out, could you please give me a big 'ol hug for about 20 min?"

Helmet day!

Essentially our day to day routine goes very well.  Sleep is still an issue from time to time, but the weighted objects (blanket and Karen) help immensely in that regard.

I was talking to someone the other day who commented on how well Nea was talking, how much progress she was making, how she was looking people in the eye, how she seemed more interactive with other kids.  I was excited for someone else to see how this year's worth of therapy really has made a difference in her life. And then the person said, " Are you sure she has Autism?"

My heart sank.

It's not the first time I've heard that from folks.  And, quite frankly, it won't be the last.  But I've really had to figure out why that phrase bothers me so much.  I really want to just stomp my foot and scream,

"YEs!  A team of developmental experts at a renowned Children's Hospital spent all day evaluating her and didn't bat an eye when they told us she had Autism!"

What does that get me?  And why do I want to yell that?  At first I thought it had to do with, "Geez, people let the girl have her diagnosis and lets move on."  But, that seems about the silliest phrase that has ever come out of a person's mouth.   I had to dig deeper.

I went down the road of "Autism really bothers people and they can't adjust their perception of what they believe it to 'look' like."  And that may be partially true, but it shouldn't bother me.  What it does say to me is that more education and awareness is certainly needed.  Every kid with Autism looks, acts and feels different.  And just because my girl doesn't fit your definition, doesn't mean she doesn't have Autism.  I settled there for awhile, because I was pretty sure that was it.

I have a colleague who is doing much research in the world of Autism for her studies.  Her and I were talking about what she is currently investigating right now.  She is looking at the conceptual/moral/ethical component to "fixing" or "moving" kids in our society/school system/world to fit to "normal".  No one ever talks about us conforming to kids on the spectrum.  All therapies, all behavior modifications, all progress is aimed towards helping an Autistic child navigate our world.  Period.

And then it hit me.  Here's my issue with the phrase, "Are you sure she has Autism?"......

That single sentence does not allow her to embrace her own world.  It doesn't allow her to wear her Autism with pride for who she is and what it means for her.  It makes her smaller so she fits in the "regular" world, and not an Autistic one.

 And that makes me incredibly sad for her.  It also makes me angry for her.  That's not fair.  It's really, really not fair.

I don't believe for one second that all of us are going to run around on the spectrum  looking at the world differently.  But at some point, in some instances it has to be okay for her to be able to live where she's comfortable throughout the day.  I think it would be exhausting for someone to pick me up, stick me in the middle of some place in Zimbabwe and said to me " This is your new world.  We'll put you in therapy 6-8 hours a week so you can practice to get the hang of it."

Uggh....

Our family lives in a world of "We're working on....."  We are working on about 100 different things to get Nea prepped and ready for the school world, society, other kids, other adults, etc.

We are working on....

• recognizing facial expressions
• identifying emotions
• not grabbing, using words
• finding a "suitable" replacement for her paci
• 3-5 new signs
• picture cards for communication (it's going so badly)
• no food hording
• no toy hording
• identifying triggers that cause her to stim
• minimizing said triggers
• touching soft objects
• on, and on and on....

Are you sure she has Autism?

Yes, I am quite sure.