The Anniversary of a Diagnosis

A year ago, I received

a diagnosis,

a slap in the face,

a validation.

No mother wants to admit she feels a slight twinge of relief at hearing something is “wrong” with her child.

But I did.  A small, small part of me thought, So it’s not me.  I’m not a horrible mother.  I have a difficult child.  It isn’t this hard for every mother.

Feelings are feelings.  What can I say?

Of course, those thoughts were immediately bulldozed by feelings of deep sadness, fear, and shame. Sadness for my three-year old son who had to deal with these struggles, fear these struggles would overwhelm and consume him, and deep shame that I felt that earlier twinge of validation.

What’s also surprising about receiving a diagnosis is that, on the surface, nothing changes.  After our initial meeting with the doctor, we went about our day.  There wasn’t an immediate transformation or quick fix.  In fact, pinpointing a diagnosis our insurance company could accept took months.  Any change my son actually felt (in the way of therapies, special needs preschool, and the implementation of an IEP) was months down the line.

But for me, the change was immediate.

In an instant, I was told there was a name for my frustrations, for my son’s frustrations.

Autism.

I didn’t truly understand what the word meant beyond the stereotypes, but I knew in that moment, this word and I would come to know each other on a visceral level.

And we have.

Autism is feisty.  It refuses to pin itself down to just one definition.  Some days, I question whether autism really belongs in the list of terms to define my son. Then it slaps me in the face, boldly reminding me it is a term that defies boundaries.  I don’t know I’ll ever be able to provide it a proper definition.

While autism may be an intriguing word, I’ve also learned it’s just one of many words to describe my oldest son. It has some fierce competition with intelligence, strength, and passion. 

A year ago, I received

word,

an insight,

an understanding.

FullSizeRender (1)

 

Advertisements

Early Intervention is Key…but wait six months.

Patience = something I don’t have.  I really wish I did.  It’d make life a hell of a lot easier.

My impatience leads me to a natural disinclination for doctor’s offices.  I loathe going to the doctor.  Inevitably, you spend more time waiting to see doctors than actually seeing them.  It’s annoying.  I don’t like it.  ‘Nuff said.

I think perhaps this disdain led me to the overzealous idea of combining both my three year-old and four month-old’s check-ups into a joint appointment last August.

Not my finest hour.

Big C did what I would have done, were it socially acceptable.  He screamed and ran in circles around the room, hitting the walls, and writhing on the floor.  I feel you, Big C.

After some attempt at discussion with me, his pediatrician recommended he see a child behaviorist.  She went on to say it might take six months to get in.

I thought she was joking.

Nope.  She recommended a few books and more or less said, “Good luck,” and we were on our ‘merry’ way.

The doc was true to her word.  Six months later (after some persistent calling on my part), we finally had an appointment to see this “amazing” doctor (not impressed).

My husband and I weren’t honestly sure what to expect.  I, for one, was excited to hear what this behaviorist had to say.  Finally, I thought.  Someone was going to give me some real strategies to help my kid!

What we got was a claim that he might be “mildly autistic” (more on that in a later blog) and that we’d have to come back in a few weeks to confirm.  She compared Big C to a news broadcaster.  He had a lot to say, but much of it was unintelligible, random, and directed at nobody (was this a knock at news anchors?).

It took a few days for the potential diagnosis to really sink in.  When it did, I cried (a lot), and felt guilty, embarrassed, confused, angry, scared: if you’ve been down this road, you know exactly what I’m talking about.  Once it did sink in though, I was ready for action.  I didn’t want to sit around anymore.  I already felt like I’d lost six months; I wanted to get rolling.

Then the road blocks began popping up.  When we got the official diagnosis of ASD, along with a gamut of recommended therapies, resources, and books to read, we discovered our insurance didn’t recognize this pediatrician’s diagnosis.  She hadn’t done a full evaluation.  We had to make more phone calls.  Once again, answers of six-eight month waits was the norm just to get an evaluation.  This didn’t include the additional months of waiting to get the therapies started afterwards.  A genetics test was suggested.  Wait time – eight months.

I was dumbfounded.  I was being told my son had ASD and it was possible I may have to wait nearly a year to start certain therapies?

This was simply unacceptable, so my husband and I did some more digging.  We found a place, a full evaluation center recognized and approved by insurance with only a three-week wait.  It was new, so the long wait lists hadn’t developed (yet).

So we went through an entirely new health system and got the same diagnosis, but this time at least, we had the single sheet of paper our insurance company wanted to see.

That was two weeks ago.  Now, we are in the midst of building our team of therapists for our son.

We’re the lucky ones.  It’s been less than a year for us to get all of this figured out.  My heart goes out to those of you who are still trying to get answers, who are still on waiting lists, who don’t have insurance, for those of you who simply want the best for your child, and are being told, sorry, you have to wait.

I’m rooting for you.

And please, let me know if you need someone to make a few nasty phone calls to get the ball rolling.  I can be highly persuasive.

10460950416_75f68275bd_o
Photo Credit