superhero

su·per·he·ro /ˈsu:pɚˌhiroʊ/ noun

plural su·per·he·roes

1 : a fictional character who has amazing powers (such as the ability to fly)

2 : a very heroic person 

There are many definitions of what makes a superhero, super.  It's not something I thought about until our superhero cape came today in the mail.

What DOES define a superhero?  I'm sure when you hear the term, something very distinct comes to mind.  A particular outfit?  The cape?  An attribute?  A strong moral code?

Here is a great discussion about this topic by Katie Schwarz:

"No definition will ever work perfectly, because "superhero" isn't a concrete distinct category but an archetype.  One can use a definition to determine if a character is nearer of further from the archetype, but never to find a definitive line, with supers on one side and everyone else on the other.  That line doesn't exist."

Now I think I understand.

What's a superhero?  I think it's whatever you define it to be, under whatever circumstances you feel require super powers of some kind.  And with that, I think Nea fits the bill.

When I think about what this little girl has been through over the past year or so, I am amazed.  She has shown  strength, courage, and an innate ability to smile through it all.  Yes, she has an entire team (therapists, teachers, family, friends) of folks that help her endeavors.  They encourage, they cheer, they support, they teach, they dry a tear and they believe in her unconditionally.  Superheros always need sidekicks, and Nea's SideKicks list is very long!

I've seen her get frustrated.  I've seen her freeze in fear meeting a new situation.  I've watched her get funny looks from other kids and simply go find another kid to approach.  I've heard her say, "I'm okay" even as I've held her tight with her little body shaking from sensory overload.  Her brain, her spirit, her senses and her being get shook every single day.

Can eat an ice-cream cone in a flash!

Could you do it?  I don't think I could.  I really don't.

Today Nea received a superhero cape in the mail.  We were on our way to the park when Poppa checked the mail and brought it to me as we were loading up the car.  I opened it, and started crying.  Such a sweet, wonderful gift for my girl who loves all things Batman, Spiderman and Ironman.

The handwritten note said,

"Super Antonea!  Roxanne thinks you are a Tiny SuperHero!  We agree!  Welcome to the Squad!"

Able to run at lightening speed!

Oh, my goodness!  How amazingly fun and very empowering.

Since she was buckled in her carseat I decided to wait until we were home to show her the cape.  (Just a sidenote....that was just dumb.  Seriously, I could have had some very fun photos in the park with cape!).  When we got home, I let her open the package and see it.

"Mama!  I'm a hero!"

She knew exactly what to do with it.  She wanted it on, she ran to look in the mirror and she exclaimed, "Just like Batman!  I'm a hero!"

Did I get it on video?  No, because I'm an idiot.

SuperNea's new cape!

Suffice it to say....Nea is one of the happiest superheros in town tonight.  THANK YOU to Roxanne for making this girl smile with pride and feel empowered!

We can't wait to see what adventures await Super Nea!

SuperNea hard at work

If there is a tiny superhero that YOU would like to nominate and sponsor, check out their website here!

Pulled the drain on swim class

I took Nea out of swim class.  Yup, I took her out.  It was not meeting her needs and she needs something different.

Now before anyone panics, I am fully aware that she NEEDS to learn to swim for her own safety.  Nea's attraction to water is very strong, and her impulse control is very weak.  She will jump in any body of water, anytime, anywhere.

As I've said before, Nea's been in a swim class since she was 6 months old.  She was never the baby that cried when in the water.  She was the baby that splashed and kicked gleefully.  I learned very quickly that I had to be careful with her around the pool because her impulse control was so poor.

Nea was usually out of swim during the summer months because we were doing swim on our own.  When fall came after she had been diagnosed, I wondered about a special needs swim class.  I spoke to two aquatic directors about a regular class or a special needs one and we decided that the special needs one would suit her best.  

That was a year ago, and it's been bumpy.  

Swim instructors at the place I take her change frequently.  So there hasn't been a great opportunity for her to bond with any single person.  That really is too bad, because the more she is "hooked in" with you, the more she will do for you.  The other issue that kept coming up was that these instructors.....as sweet and as nice as they are, would not listen to me when it came to helping to teach her.  I knew they did not have specific training in Autism and I tried to help them understand what HER motivators were.  I explained time and time again that putting her in the baby pool does not work for her because she simply just walks around.   Really, I grew sick of having that conversation.

So the combination of inconsistency, lack of knowledge about her Autism and not listening to my suggestions had me looking for something else.   In reality, her current state of swimming skills has come from me and our time in the pool together.  I've taught her how to hold her breath and the beginning of how to move underwater.  When I let the teachers know what she's done (especially when trying to quickly fill in a new one) the information is met with nodding and a courteous smile.  There's never a "okay, great! Nea, lets see what you do underwater!"  They each like the process they know and want Nea to follow that same process.  In the beginning, I was open to that, believing that learning the process presented was what she needed to do to learn to swim.  But what I found is that her frustration levels only increased.  There has not been a "lets go with where she's at today."  Every day is different with Autism.   And what worked last week, probably doesn't work today.  But that notion always fell on deaf ears.

Advocating for your child sounds so cavalier, until it starts to get in that messy world of hurting feelings or making someone angry.   The place we are at now has great programming, but it just doesn't work for Nea any longer.   What I really want is a robust program like this that is focused on kids with Autism.  Right now, everything is a retro-fit and it's just not working.  

I have contacted the Certified Therapeutic Recreation Director at the new place to talk about private swim lessons and options available for Nea.  The other thing I'm so impressed with is that they will make accommodations in ANY of their programs for special needs kids with a couple weeks notice.  Putting Nea in a tumbling class or a dance class has always been of high interest to me.  Also, this new place is connected with Special Olympics and I find that very promising.

I don't know all the answers or details yet.  In the meantime, Nea will spend weekly swim time with Mama and we will work on swim kicks, arm circles as well as movement under water.

Stimming

You've done it.  Yes, you.  If you've ever twirled your hair, shook your leg, bit your nails, drummed your fingers, tapped your hands....you are stimming.  Self-stimmulating behaviors.  They can provide sensory input or quiet an over-active nervous system.

Let's remind ourselves about Autism.  It's defined as  "a disorder of brain development, probably beginning before birth."  Notice it says "probably"....because in fact, we just don't really know.   It was once believed that it was caused from bad parenting.  We stressed out and devastated many Moms about "frigid mother" back in the 50's assigning the fault to them. Now the thought is that it's a very complex and multi-organ....affecting the GI system, the immune system, the metabolic system and the central nervous system.  It's very common for kids with Autism to have sleep disorders (Nea certainly does) and hormonal imbalances are being reported (Nea also has this).

The stimming behaviors are part of that central nervous system issue.  The difference between "typical behavior" and kids who have Autism is that the typical kids can turn it off or stop the behavior.  Children with Autism cannot. It should also be noted that some stims are seen as "disruptive" and therefore, therapy is used to help with the behavior.   There is much discussion in the Autism community and with behavioral therapists if these kiddos should be allowed to stim or if it should be stopped.

So, can you identify your own stim now?  I will confess, I have 2 very strong stims.  First, I twirl my hair....usually when I'm bored, or when I'm trying to concentrate.  I also rock back and forth.  I'm doing it right now as I type.  Self-stimmulating behavior for typical kids (and adults) is a matter of choice and a matter of intensity.  I can stop rocking and twirling very easily.

And, as predicted, Nea stims too.  We had to make a decision on this journey if we were going to allow her to stim or if we were going to try to stop the behavior.  At home, we allow her to stim and do not put limits on it at all.  In fact, we view it as a communication tool.  And we know at school the rules of society are very different.  They teach "quiet hands" if it starts to get to be too much.  I noticed that during speech therapy (when Nea has to concentrate very hard) that she starts moving her arms up and down as if she's drumming.  The therapist ignored it for a period of time and let her center herself with that activity....and then redirected her gently.  It worked well.

 So how do we know when Nea is stimming?  And what's it mean?

She has an oral fixation for sure (the paci, licking all new objects, flicking her nose to create a vibration around her mouth).   In and of themselves, they are not a big deal.  Babies and infants mouth objects all the time, it's how they get information.  6 month olds have a joyous time when they find their hands and toes and stare at them constantly.   However, for Nea at the age of 3, these activities are not developmentally appropriate and may even be in the way of progressing other development.  She also likes 3 pacifiers at a time.  One for her mouth, one to flick her nose repeatedly and one in her hand....squeezing.

A 3 paci moment (click on pic to enlarge)

Her other ones are spinning or falling down hard.  I can tell you when I see them the most....when she's been over stimulated (after school, time spent in a big crowd, or in an area with lots of noise) or when she's trying to deal with a big emotion (excitement, anticipation, fear, anger, frustration).  Her vocabulary is limited, so her ability to let us know the issue is limited.  She's 3....3 year olds can be quite verbal in expressing their ideas and emotions.  But because communication and speech are so difficult for her, it seems to manifest itself in different ways.  It's our job to meet the need with either a weighted blanket, dark room and quiet activities or hit the other end of the pendulum and get her on her jumper.

 I will tell you that some of it is science, some of it education from great therapists,but most of it's gut instinct.

Some therapists and scientists believe that stimming often produces a chemical reaction in the brain and that for people with Autism, that reaction is 10-fold.  If you've ever experienced a "runner's high", you understand what this means.  Seriously, if you had that feeling when you flicked your nose repeatedly wouldn't you do it often?  And if you were in a very stressful situation, wouldn't you do it as much as possible?

For some reason, I get this stimming thing with her and it never bothers me.  Maybe it's because her stims are more subtle.  But  I know for some parents it makes them very uncomfortable.  Although, I have to say,  the looks we get when she has a paci out are downright damning.   As she gets older, my plan is to help her identify when she's stimming so that she can understand when it's coming and come up with strategies to deal with it.

In the meantime....we spin, we rock, we jump, we flick and also we squeeze, we hide, we cover.

Welcome to Autism.

The Art of Communication

Oh my goodness!  I promised a blog post about speech therapy at school, and it's taken me a few days to get it posted.  Life happens, what can I say!

The early learning center has a very open door policy when it comes to parents being a part of the classroom.  I'm grateful.  Understanding what Nea's experiences are at school, helps me immensely at home.   When I contacted the therapist, she was more than happy to have me come and watch Nea's session.

Nea receives services of 60 minutes a week.  30 minutes of that are met in small group activities with other students.  Remember, the social aspect of speech is Nea's focus now and group work is really important.  The other 30 minutes are divided into two 15 minute sessions done on Tuesdays and Thursdays.  This is a 1:2 ratio with the speech therapist, Nea and another student.  Again, the focus of sharing, turn taking and vocalizing requests are best accomplished with a peer.

Thursdays session was held on the floor in a corner of the library.  The teacher gathered Nea and her student peer and ushered them to the area.  The area is "walled off" with chairs and furniture but kids are naturally curious and many kept moving in and out of the area.  There is another class (besides Nea's class) that is in the library at the same time.  Yes it's loud.  The music area is right next to the "quiet corner" so drum playing, cymbal crashing and singing were happening the entire time.  Lots of laughter and fun from the other children in the room and certainly the energy was HIGH!

The whole thing was distracting to me, I can't imagine how it was for her!  She was hyped up, there's no doubt.  She wouldn't sit on the rug on  the floor, she grabbed at objects, she was fixated on the dinosaur that was in a toy-pack behind the therapist and she would not respond to any conversation.

It was dreadful.  It was really, horribly awful.

Both the teacher and the therapist discussed with me before and after that the area was not really conducive to therapy sessions.  However, that's the only area they had and they had to make it work.  It's far to early for me to go into some issue "both guns a blazing" but I had to figure out how to help or Nea's Thursday speech sessions were going to be worthless.

In fairness to Thursday being so awful, I requested to go to a Tuesday session.  The speech therapist was happy to have me and I went back to the school 5 days later.  This time she went to the classroom, retrieved Nea as well as the other student and brought them to the speech classroom.

Holy smokes, a TOTALLY different environment. 

Bulletin board in speech room

First, the cabinets are closed, so there are not super fun toys to taunt Nea.  Distractions were minimal if at all.  The speech classroom is divided in half, but there is a wall divider that works very well.  Nea was happy to sit in the chair.  Chairs work best for her activite little body because sitting on an open floor does not provide good sensory feedback for her butt.  She needs boundaries, and firm ones at that.

The session went very smoothly.  Nea and her peer played a word matching game, they shared, they took turns, they had to talk about the game.  The speech therapist provided input if the girls were just echoing or not saying words correctly.  She wouldn't let either of them get by with nodding answers....they had to say the word.  I have to say it was really cool to watch Nea interact so closely with a kiddo her age.

As it turns out, I didn't need to help anyone.  The speech therapist and the teacher made other arrangements so that Thursdays sessions didn't take place in the busy, noisy library.  Perfect!

So what does this all mean?  Has there been a successful transition from private speech therapy to school speech therapy?

Private speech therapy was our beginning.  In fact, if you remember, it was the speech therapist that strongly encouraged us to get her to a developmental pediatrician due to the autism signs she was observing.  For the past year she worked on helping Nea understand that communication has a purpose.  She helped her understand how to make requests, she taught me how to create communication tools, she helped us to understand Nea's needs and motivations with speech, she insisted on eye contact routinely, and on and on.  Essentially she laid the foundation (and a damn strong one) for Nea to build upon.  When she told me, "I can't help her anymore" I wanted to fall out of my chair.  Nea's foundation was ready, she was more than ready actually....she needed to move on to the practical reasons that we all use communication.  Conversation, social interactions, expression of emotion, understanding someone else, getting your needs met...etc.

Nea has been in school 4 weeks, and here are some major things that I've noticed....

Instead of lining up toys and animals (which she still gets great joy from), they now introduce each other.  "Hi Thomas, what's your name?  I'm Mia"  (she still has trouble with the N sound).

Pretend play has increased dramatically with animals talking to each other "Tiger, it's okay, don't be scared, Mama is here."  "Elephant do you want to play?"  "Giraffe, do you want to ride the train?"  She's making a conscious move from inward play (watching the wheels go back and forth) to pretend play with appropriate use of the toy.  It's been nothing but amazing to watch.

And then there is books.

We have lots of books around our house and Nea never has had an interest in them.  She may look at them once when she saw it, but after that it landed in a pile and she never cared.  Try as I might to pull one out for her and I to read together....she simply wanted no part of it.  There was nothing pleasurable about it for her.  I know that reading to your child helps to increase her language and vocabulary, but it just wasn't working for us.  And of course, as all Mom's do, I felt horribly guilty.  Maybe I wasn't trying hard enough.  Maybe I wasn't presenting it well.  Maybe I didn't know how.

But school has changed that.  Somehow, someway they have introduced books to her in a way that excites her.  She's in the library every Tuesday, she brings a new book home, she brings a book to me routinely now to sit with her and read.  I may not get to read every word on the page before she turns the page, but we certainly get the gist of the story with my ad-libbing along the way (thank you Drama club).

I rearranged Nea's room to look more like how her classroom is  organized.  There's the quiet corner where her tent is set up, there's the jumper for her to burn off some energy, and now....there's a bookshelf for her books.  No longer do they sit in a pile in a carton.  Now they are displayed so she can see every one and choose as she wants.

Nea's Jumper

Yesterday I heard this from Nea's room.....

"Meow" (from Nikki, our cat)
"Oh!  Hi kitty!  Come in!  Sit down.  Sit down, kitty. SIT DOWN KITTY!    Want to read storybook?  I read storybook to you."

And when I peeked in, there was Nea on the floor, book open, talking and "reading"

....and the sweetest cat I've ever known, listening intently.