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.

Looking for a Bear, Finding a Penguin.

First, before I get down to today's post, I would like to rant about a little something.....

*stepping on soapbox*

Alright, you jerks that park in parking spaces you are not supposed to....shame on you!  I take my daughter to the pediatric rehab department weekly at the local hospital.  The hospital has been kind enough to dedicate 5-6 parking spots in the front part of the parking ramp for parents who are bringing their kids to the rehab department.  Each spot is clearly marked, "Pediatric Rehab parking".  Seems easy enough.  If you have a license to drive, I'm pretty sure you can read as well.  Why did they do that?  Many of those kids who come to the rehab department have devices such as walkers, canes, special strollers, wagons, etc.  And when you're toting a kid with any of these devices, it can get pretty cumbersome.  The shorter the walk, the much better.    We are fortunate enough to not require one of these devices.  However, my child is autistic and has bolted away from me one too many times no matter how tight my grip.  I'm grateful that we only have to walk a short distance, and are out of harm's way quickly when we park in one of those spots.  It's unbelievably disrespectful for you to decide that your personal "got a good spot!" need is rated higher than the need of a disabled child.  Shame on you.

*end rant*

Alright, moving on.

A new year and a new round of testing in therapies!  Everyone is gearing up for our upcoming evaluation in February by the school district.  It's time to test again and see where she lands so that information can be shared with the school district prior to their own evaluation.  Is she really going to be 3 in just a few short months?

Both the OT and speech eval will be done in different parts.  Her OT session went well enough today.  Nothing new or major as far as needs go.  Nea still has sensory issues that will continue to need worked on daily.  Her trampoline that Santa brought has helped immensely at home with pulling herself together when she feels out of sorts.  The jumping is good joint compression, which my little sensory seeker needs to feel balanced.  Last week we did not have OT but we did have speech therapy.  As expected, it was a much more difficult session. There was a lot of head spinning and arm flapping to be able to stay focused.  She was able to maintain, with Diana's help.  In Nea's case, "help" means that Diana picks her up and sits her on her lap, giving her soft "squishes" to see if she can help her get herself back together.  It usually works.  I am grateful everyday that Diana is a part of her life.

Diana started the speech evaluation this week.  The first test was the "articulation" test.  Nea identified many pictures on her own and the ones she didn't she would repeat very clearly to Diana.  Nea's VERY much echoing these days.  Echolalia is a very normal language development tool that children use, but for a child Nea's age, it should be waning by now.  We know Nea's behind in expressive language so it's no surprise that it's just making its appearance now.  The point of all this is...Nea can SAY the words almost expertly, but when and how and why to use the words just isn't all connected as yet.  More testing next week as Diana evaluates expressive and receptive language.

One of Diana's cards had a picture of a boy crying on it.  Diana said, "What's he doing?"

Nea: "Awwww, he's sad."

Diana:  (picking herself up off the floor)  "YES!  He is sad!  What is he doing?"

Nea:  "What is he doing?"  (it's hard to say if she was echoing or if she really wanted to know)

Diana:  "He's crying.  The boy is crying."

Nea:  "The boy is crying.  He is sad."

And there I was, in the observation room sobbing.

 All these months of reviewing, seeking out faces to explain emotion, over and over, repeating, reviewing pictures, books...on and on.  Today we were able to see it come together.

It's not only that she recognized the face of sadness, but that she was appropriate with empathy.  She had an appropriate response with "awww, he's sad" and not just a mechanical one with, "he is sad"  It's such progress and I hope to see more in the weeks to come!

After our weekly trip to Jamba Juice (note to self: buy Jamba Juice stocks),  we headed to the mall.  Of course, we can't be in the mall without a train ride.  The conductor knows us by now.  We have a lot of punches on our card.

1st Train ride of 2013

Our next stop was the Build-A-Bear workshop.  I've been in there a few times with friends' kids, but never with my own.  This was our first time in.  Nea's had a bit of a fascination lately with bears.  She really likes the Bear Hunt story, as well as watching Brave.  She calls the Queen (who turns into a bear) "THE bear" and the bad bear "the OTHER bear"  She points out bears whenever she sees one (stuffed, drawn, on tv, etc.).  So I thought we would head to the Workshop and make her a bear of her very own that she picked.

I also had an alterior motive.  (Just so you don't think that I'm a mom who gives into every whim my child has, dear reader).  I learned on one of my listservs for parents of autistic children that Build-A-Bear would help you make a weighted stuffed animal.

Remember, Nea is a sensory seeker.  This means she likes deep pressure, heavy things, etc. to give her body feedback and information to her sensory system.  When that happens, it starts making straighter pathways of information, instead of crooked ones.  Crooked pathways require self -stimming, like flapping and spinning and squishes.

Of course my girl who has a new fascination with bears, fell in love with the penguin she saw in the bin.  Admittedly, I loved it too!  So we took it to the workshop gal who began stuffing it and then she added the 2lbs worth of poly pellets that I had brought with us.  The new stuffed penguin, who normally would weigh a quarter of a pound....was now topping the scales at 2.5lbs!

She loves it.  It's good for her to carry it around.  She lugged that thing through the entire mall as we made our way to the exit.  2 lbs of penguin is a lot of work for the girl.  But it's good work and it's work that keeps her grounded.  I've never seen her walk such a straight line in all my life.

In case you're wondering, the penguin has a name that Nea came up with all on her own.

Everyone, meet Karen.....the 2lb penguin.