Climbing

I was asked to speak at an event on Friday night that was a fundraiser for the pediatrics rehab department at our local Children's Hospital.  Nea was asked to ride her bike to help raise awareness of all the great things some of these partnering organizations do for kids.  We sat court-side, and Nea seemed to be really excited to be in the middle of the action.  She kept her eye on the ball most of the time, but after the 1st quarter she was getting ancy so we had to keep moving!  

We made it to half-time and Nea did pretty well.  She had her fingers in her ears often, so the sound must have been constant and loud enough it started to bug her.  When half-time came,  we loaded her up on her bike and she booked it across that gymnasium floor!  

I was asked to speak about what therapies have meant to us and how it has helped our family.  Do I remember what I said?  Not a word.  I tend not to write speeches like that, but rather say them from a real a place as possible.   But when I do, I cannot remember a word I said.  It's like my brain disconnects and my mouth just starts speaking.  I know the sentiment had much to do with how our life changed, how Diana encouraged us to get her formally tested, how their support was invaluable and could never be described in words, and how they gave us our daughter back.

That part I remember clearly.  Because the reality of that part is still etched in my heart.

We knew that by the time we took her to the pediatrician and words were disappearing that we were in trouble.  And we knew that she avoided people so strongly, that even Grandma was having a hard time getting in that she was starting to disappear into herself.  We knew that if we didn't get her help soon, we may lose the one window we had to reach in and grab ahold.

Speaking at event (creative face blocking added by me)

The message I was trying to convey is what science has spent a lot of time and money proving.  The earlier kids with Autism are identified and therapies started, the better the outcomes.  Its intense therapy for many hours a week, but it changes brain function!   What we have spent the last year doing is understanding and working with this thing called Autism.  Sometimes I've been pleasantly surprised, sometimes I've been lead down the primrose path and sometimes I've been completely snowballed.  By the time Nea is old enough to start asking questions about her Autism and what it means to her, I hope I have an arsenal of information to hand to her.

When we were at the park today, I kept thinking about where we were just a year ago.  A child that couldn't talk or express herself.  Days and days worth of meltdowns because of frustrations with communication.  Poor sleeping patterns.  Frequent stimming with hand flapping and head bobbing.  She still has some of these issues, but they are not as pronounced AND we know what to do with them now.  It's been a year of growth.  I'm no expert, but I'm an expert where my daughter is concerned.  So, in pictures .....here's how far we have come....

A mature pencil hold.  It may seem like nothing, but being able to hold a crayon/pencil/pen correctly now will save her tons of frustration as she begins to learn how to write.  OT works long and hard with her to help her get used to textures and participate in "usual kid stuff".  If Nea is paralyzed by these things, she will not keep up with her peers.

Shared interests.  Do you realize that she wouldn't point to objects so that we could share an experience together?  That's a significant milestone and one that evaluators look at closely.   If she stays in her space and never draws me in....it will be more and more difficult to keep her engaged with the world around her.  This was a significant delay for her (almost 30% delay) and she's come a long way with it!  Johanna (the DT) spent hours and hours and hours figuring out how to engage Nea, keep her engaged and teach her how to share a conversation with someone else.  

Showing me a bug she captured!

Upper body strength.  The girl would fall on her face.  A lot.  She had no core, no upper body to move her through a tunnel or keep balance if she needed.  Again, OT played a huge role her in helping her gain more control of her body and start to feel comfortable with it in time and space.  Doesn't she look like such a big girl in this picture?  

Gross motor.  She didn't really have many gross motor delays.  But what she did have was the poor coordination factor.  Incorporating gross motor and fine motor together to do something like climb a rock wall takes focus and persistence.  She fell off this rock several times.  There was no meltdown or frustration or head-butting.  There was only her saying, "try again!"  (It must be a phrase she hears a lot in OT)

I'm telling these stories for 2 reasons.

1) Because some days the mountain seems so overwhelming I can hardly stand it, and this is a good reminder that what I think is impossible today....may not be impossible tomorrow.

2)  Because other moms, dads, grandparents, friends, families need to understand and find value in early intervention.

I'm not trying to toot my horn.  (my horn is broken, has been for awhile)  I am trying to advocate for kids.  Listen, we didn't make these huge strides by ourselves.  We had help.  We had HUGE PROFESSIONAL help.   And if you know a kid who might be on the spectrum, or has any developmental delay, please...get them into an Early Intervention program.  (age 0-3) You can find details for your particular state.

Everyone needs help to climb a mountain.

Or a rock wall.