a Rearranged Life

One of my friends recently asked me whether the battle for my son’s communication was a hard one.

hmmm {and yes, I did just “hmmm” out-loud in a coffee shop}

The answer is a sigh and a “yes” – yes for the present, past and future – and those are always the toughest form of hard.

Before I write the things I’m learning, I need to tell those of you shoes like mine:

YES  – It’s another mountain…and it’s a biggie.

And YES it will take your breath away and it’s another door to FEAR – fear that your therapist or school system won’t accept it, that it won’t work, that it will break you, and worst off all…the fear of UH-nother freaking mountain!

But you CAN do what you CAN.

You can put one foot in front of the other.

The doors ahead – one at a time – you can figure out which doors are worth opening (or kicking in) and which aren’t worth passing.

You’ll need to leave room for error.

You’ll need to leave time for time that you don’t have – to walk through the grocery store like a zombie, or pretend that your biggest decision is which book you’ll read next or like you have all day to pick out some-thing-anything-for-yourself, and to pray and remember that you are not alone, and leaning on an everlasting arm in another battle that is larger than life is more productive than running yourself crazy – clarity comes in rest.

So now…for the actual content…

The Maze

In special-needy land you live in a rat maze – and essentially there are a lot of pathways that are blocked aka #notworthyourtime.  Figuring out what these pathways are and what the “magic words” are to open doors – that’s what it’s ALL about.  And if that weren’t enough, often the organizations/paths that are broken here, are your best bet 2 counties over.   As with all things in life, there is no one-size-fits-all solution. Sometimes the best person to advise you on the path that works in your area is at the end of the maze – and the awesome thing is – YOU CAN CALL THEM DIRECTLY, so that was the first step I took.

Connect: buyer – seller

So when my boy was 2 – that’s what I did (and if your child is much older and you are just now getting started on this – DON’T beat yourself up about it.  Every kid is different.  It’s good that you’re here now, and you can give it a shot.  Perhaps you would have exhausted your child and yourself too much if you had begun to early and added too much toxic stress to your household.)

I did my research online and called other parents I knew with devices.  I figured out who the more reliable companies were and called them each.  After that, I narrowed it down to 5 companies.

Get thy hands on the thing

3 companies brought out their devices for my son to try (some of the best companies have reps that are also speech therapists and some of them will drive from 2 states over just to let your child try the thing.)

I rented a device for a week or 2 from the one that was a start-up, and I borrowed another from our local birth to 3 program.

From here I was able to narrow it down to the product that was best for my son

ASK – find the path that works

It could be your school system, your insurance-funded speech therapist, your UCP, your state’s AT program, a nearby university, a charity…the list is endless and you can run yourself ragged chasing every lead.

The seller is, most likely, the one who can tell you who funds devices in your area, and the therapists that work with them – these are the paths that work.

These computers are very complicated, and getting the right settings and language software for a child’s unique needs – it’s not for the faint of heart.  For many speech therapists, this is beyond their range, but there are some who tend to specialize in AAC.  They are rare jewels when you find them, so hold tight!

For us, our speech therapist was resistant to the idea of one for our son, and even went so far as to tell our insurance company that she didn’t think he could use it (a crushing blow).  We then had the company we were working with tell us who knew their stuff in the area, and at that point there wasn’t much cooking in our area, so we drove 3 hours and had a thorough and AWESOME evaluation done.  Tears were shed – happy tears – the first time I heard my son’s voiceless voice!

This was the beginning.

And there is More…

There has been MUCH much more that followed and the story is not over yet…so when time allows I’ll pull back more of the curtain on this odd world of AAC, eye gaze, direct access, scanning, switches, cause/effect, screen guards, mounts, calibration, – valleys and peaks. But for now, lets just focus on that very awesome idea that

the voiceless can have voices

– that parent’s who have never heard a memory or an “I want” or “I hurt” can actually hear these things from their children!  It’s a miraculous world, fraught with headaches and obstacles, but what good thing in life doesn’t involve trials?

How about you?

Are you on this road too?  What has worked for you?  What tips would you most liked to have heard when you started in the journey toward AAC for your child?