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.

Saying Goodbye

I've said time and time again...the transition from EI is the hardest for parents, not for the kids.....

Once Nea is offically 3 years old, she "ages out" of Early Intervention Services.  She's been in EI for almost a full year and you've heard me say before that we have been blessed with 3 very awesome therapists in OT, Speech and DT (developmental therapy).

So what is developmental therapy?  (You know I'm going to put stories here, pictures, my raw emotions, struggles, triumphs,etc.  But I wouldn't be me if I didn't educate a little bit as well!)

Development Therapy focuses specifically on HOW a child is developing.  They don't address one particular area (like OT, PT or speech), but look at a  child from a global point of view.  They keep an eye on cognitive skills, language & communication, social-emotional skills, behaviors, gross and fine motor skills and self-help skills.  They take all the information from OT, Speech and any other specialists a child may have (PT, mental health, etc.) and puts it all together through PLAY.  You know the saying, "A child's work is Play" and a developmental therapist lives by this mantra.  A Child Life Specialist does as well!  DT's help kids learn how to stay engaged in play, socialize with peers appropriately, encourage emotional growth and increase communication skills.  A lot, right?

Nea's DT came to our house 2x a week.  You can imagine that over the course of a year, when you see someone 2x a week and do some pretty taxing mental work with them there is a bond that forms.

Nea was very resistant at first.  She didn't want to have to do work while she was at home.  Think about it.  You're lounging around your house, going about your business and your boss knocks on the door....

"Hello! Time to work!"

Huh? What?

Eventually Nea and the DT found a balance, a trusting relationship and she has been part of the reason Nea has made such great progress in such a short time.

So today was Nea's last time with Johanna, her developmental therapist.  Now of course Nea is oblivious to the fact that she won't be seeing Johanna 2x a week.  Ignorance is bliss there is no doubt.

Nea will be getting much of the same type of services that Johanna provided by going to school.  Spending time with peers, working on speech and language, looking globally at a child will be incorporated in her academic career.  That's what that IEP was all about!

And today, Johanna brought a candle, a dilly bar and a birthday present for Nea.

So, meet Johanna.  A very, VERY important person in Nea's life.  Of all the therapists, Johanna had the toughest job because she came into Nea's turf.  But she earned Nea's trust and she was able to teach her colors, share toys, match objects, and so on and so on.

Johanna and Nea

 In short, Nea's success is because Johanna was invested in Nea's success.

Johanna came to every meeting.  She actively participated in the first transition meeting with the school.  She came to the IEP and added VALUABLe information about Nea's progress.  Johanna wrote notes on every interaction and shared them with us after every session.  She also communicated with speech and OT frequently and incorporated many of OT's suggestions when trying to deal with Nea's sensory issues.

Of course Johanna always brought the best toys!  She always had this big bag with awesome stuff that Nea loved.  And I'm not going to lie, Nea was known to try and sneak some of them away!  Nea hordes, and Johanna's toys were not off limits to her capers.  I think we have most things back to Johanna, but there may be a few items that have been "pilfered" by Nea the Ninja.

Today was about celebrating a year of growth, new journeys and bittersweet goodbyes.

A dilly bar, and a birthday candle!

And if you get a birthday present that's very cool, you know it's going to come from your developmental therapist who knows what you love, and knows what toy will continue to help you grow.

Nea played with it most of the day and all evening.

Car garage from Johanna!

We will miss Johanna and all her fun stuff, all her patience and love and her infectious smile.

Thank you Johanna for making this year an exciting and growing one!   We will miss you!!   We hope to see you "around the playground" in the future!