Sunday, April 26, 2015

 Awareness

I was at my favorite coffee shop on Saturday, meeting one of my May brides to go over beautiful details in anticipation of her big day. While my favorite white chocolate raspberry latte was being brewed (concocted? formed? created?) I glanced at all of the posters that were hanging down from the counter - asking for visual attention. The colorful puzzle pieces on one particular poster drew me in.

"April is autism awareness month", it read in bold letters across the front.

Yes. I think it might be. 


It doesn't really matter - adding another diagnosis.

Does he or doesn't he? - It won't be earth shattering.

But you know that thing? The intuition? The "gut feeling"?

I have it, you see. And sometimes it just propels me forward - gleaning information, weighing options, and eventually advocating for what my heart says my boy needs.

And right now The Heart Propelling is in full force. It's functioning in full "time to get some solutions" mode.

It was probably about 6 months ago when I read an article on autism. It popped up in my news feed on facebook.I glanced at it distractedly. Doesn't apply to us, but ok, token glance.  

And then my jaw dropped, my heart beat increased considerably,  and everything else disappeared for an unknown amount of time as I read about my boy. To a T.

I think this is a road our medical team hasn't gone down because for so long we were tied up in  "life issues". 
You know, little details like
breathing, 
eating, 
brain function, 
walking. 

There are some doctors who are shaking their heads. Saying, no - this isn't him. They don't seem thrilled that I have taken a walk down this road and am poking around a bit.

And then there are the others. The ones who say, "what? where is the autism diagnosis on his file? I don't see it, but surely it is here..."

And one of those recent doctors, who would fall in the latter category, was Dr. Hope. Experiencing Dr. Hope gave me that final push in starting down that road.  Dr. Hope herself falls somewhere on the spectrum. The way she interacted with K, had immediate inside jokes with him, and translated his words and action to me demanded some sort of awestruck respect from me.

She sat next to me shortly after entering the room and told me that she had Asperger Syndrome. While she was respectful of me, she clearly understood and advocated for K in a impressive manner.  And at one point I even got the slightest bit of suspicion that she pitied K's therapist who was with us, and myself - because we weren't autistic. At one point K began to come unglued when I tried to take his Ipad so that he could concentrate on answering questions that Dr. Hope was asking. She dimmed the lights, sat on the floor with him and began whispering with him.  He calmed almost immediately

The K whisperer?  

I physically had to hold myself back from an inappropriate proposal,
"Um, excuse me ma'am, 
could you quit your job 
- with one of the leading university hospitals
 - and, you know - helping tons of people, 
and move in with us? 

In about 60 minutes time she explained so many things to me. So many things that I am still processing and tucking away in my heart.

So this possible diagnosis, - this word that gets thrown around a lot and has all kinds of generalizations and implications.
Autism.
It will not define him. Some say it would be detrimental to throw it on him. But honestly? If you could peek into that heart intuition that is propelling me forward, you would get it. What is happening in my head and heart as I read more and more about autism is more enlightening than most information I have gathered in the last decade. Part of me is just thinking, "What? Why was I thinking that so many of these behaviors were just big ol' question marks that no one could explain? Why am I just now seeing the obvious?"

As I have read more and more about this I have almost wept at this relieved feeling that there are other families who are experiencing what I thought were unknowns that we had to wade through alone.

It wouldn't have mattered if they were always a big ol' question mark. I had wrestled with that and slammed "All The Unknown Things" down on the mat. Didn't matter. But now....




There's this almost unexplainable stream of sunshine cascading over some of the cloudier places in my being. I wish I could articulate this better, but right now I'm still in the processing stage and it barely even makes sense to me yet - so bear with me. ;)

There was a time when I allowed a {primarily culture-noise led} mindset to begin unraveling some of the strings of contentment that God was weaving around my heart.

It said, "Oh, those precious 15 weeks. He was so perfect before your body betrayed him and pre-term labor brought he and JD into the world before they were ready. 
Those perfect little bodies and perfect little minds.... What could they have been?" 
Sometimes I would indulge in sitting and thinking about "what might have been". My 10 year old K, 11 year old K, 12 year old K....
 whole.
 "Normal".

And my heart breaks a little bit for any time I have listened to culture and formed any kind of thought about my precious child based on that noise. 

You see, that kind of thinking can be like poison.
Because my K is whole.
And none of us are "normal".
And that "what might have been" way of thinking?
Useless. 

It wasn't. It isn't. God is sovereign and in control and questioning what is - is in effect questioning Him.

So here's the I-can't-quite-explain-it-yet sunshine cascading over my soul.

There are no "what might have been's". 

This is our K,
always was our K,
and likely would have been our K - regardless of those precious 15 weeks.
While my understanding is still very preliminary on this, it seems there isn't a conclusive link between prematurity and autism.

My ministry to him just gained a huge dose of clarity. It was meant to be my life. God saw me and my feeble gifts. He knew my heart better than I know it myself.

And  He knew.



He knew that I would be K's mom. That I would feel woefully inadequate, and cry out to Him on a daily basis because of it.

He knew. 

Nothing else ever would have been. This was it all along.



I feel this privilege and honor. ... and maybe now you see why I call it strange and unexplainable.

This week we are beginning autism evaluations. We are starting some new therapies, among some other new possibilities. I am fully aware that along with the autism diagnosis there are certainly a whole new set of question marks and unknowns. - I'm not expecting All The Answers. But I feel like I am finally understanding some things I have never understood. I am hoping to gain some tools, for Dave and I, the other boys, and K, that will help us help him. And I know I'm not alone in this.

So - this month will be coming to a close soon. This Autism awareness month. And with it some awareness in seeping into our family.


2 comments:

melody said...

Hi Wendi~ I have followed along here for many years, but am a bit of a lurker and rarely comment...But today, I just had to come out of the shadows!!

We too are very 'aware' of Autism in our home. My 9 year old son has Autism of the high functioning variety. We have had the diagnosis for about 2 years now. It was a long tumultuous road getting there, to the diagnosis, and of course it didn't magically get better once we had it. But just knowing what exaclty we were up against brought a great amount of peace. We waited a year until we told out son, and the first words out of his mouth were a high sigh a relief and, "OH THANK GOODNESS, THERE'S NOTHING WRONG WITH ME!"

I don't have any earth shattering words of wisdom to offer you. But instead, prayers of peace, a knowing nod, a virtual hug and of course a reminder that you are not alone : )

A blog I love and find really encouraging is http://nottheformerthings.com. She's a mama with a son with Autism and she shares her in such a raw and real way, but always pointing back to Jesus.

If you ever want to chat feel free to e-mail me melodygross80@yahoo.com.

Kimberly (Anthony's Mom) said...

It took doctors awhile to diagnose Anthony with ASD. His lack of speech was a huge red flag. It wasn't until we ran all those biomedical tests that it was obvious his symptoms were part of ASD. And as we started treating what the test results showed us, his ASD symptoms started to go away. His sensory issues stopped. His speech came back. It was amazing. You know where I am if you ever have any questions. And as always, your K is a little miracle. <3

Kimberly