May 30, 2012

And Then I Grieved...

I'm not much of a crybaby. Oh sure, I'll tear up once in a while at sappy videos of cute kids or Hallmark commercials - I just don't typically cry when I'm in the midst of a crisis.

I hide behind sarcasm and I act tough. I learned this as a child - crying was seen as a weakness in my house. I was no crybaby.

You know how some people are - their first reaction is to cry. They panic, they are frozen on the spot, wailing and crying out of fear or anger or I don't know what. 

That's just not how I operate. That expression of raw emotion frightens me. My insecure self wants to yell, "Get a grip, will you?"

I lost my tough exterior when I saw this posted on my daughter Shannon's Facebook page:

I read that, and I sobbed like a baby.

Cameron got diagnosed with Asperger's and ADHD a week or two ago. Shannon is learning all she can about the gluten-free/casein-free (GF/CF) diet. She's learning about IEP meetings and 504 plans, and finding out just what her health insurance will pay for.

Ten years ago, I never cried when The Boy was diagnosed with bipolar disorder. The diagnosis meant medication and therapy, often with varying results. I met clinicians that cared, ones that took the time to explain what was going on, and what might lie ahead. I went from mom to mental illness information gatherer. I had lots to learn.

The Boy had additional behaviors that just couldn't be blamed on that initial diagnosis. Three years later, when a doctor finally added Asperger's to the mix, I was grateful that it had a name - and if it had a name, it could be defined and explained. Progress could begin.

Then the hard work continued. There was no time to cry. There was work to be done. I worked tirelessly to get educated, to find him therapies and providers. He was my "project".

I'm still not sure how I worked full-time AND do all of my research (bipolar and ASD) and manage to take him to appointments. Dealing with school districts whose tone ranged from apologetic to downright uncooperative is tiring. When I get that rare gem of a district that willingly accepts my child, and works tirelessly to help, I thank them profusely and sing their praises.

Realizing that there's a shortage of doctors and slots in programs, and endless hoops to jump through and reams of paper to fill out to get services makes me feel helpless and hopeless.

Spending countless hours driving to and from appointments only to re-tell the same information over and over (the exact information that is contained in the reams of paperwork) is frustrating; my wheels are spinning, I'm getting no traction.

I am SuperMom...not. What I am is persistent and tenacious. The Boy is worth my best effort.

But miracles do happen, positive change is possible. That's the reason I get up each day and start over, looking for that next opportunity, the next teachable moment that resonates with The Boy, the staff and programs that "get" him, and that spur him on to success, no matter how small.

Now, Shannon and Aaron are just beginning their journey as parents of an autistic child.

That's why I grieved. After all this time, I know what it's like; I know how hard it can be.

This is not the life I imagined for The Boy, and it certainly is not the life I imagined for Cameron.

If I could take on Shannon and Aaron's burdens, I would.

I know they will have different issues and obstacles, as well as different joys and pride in accomplishments than The Boy and I have experienced.

I just wish they didn't have to go through it at all. But wishing won't make it so.

I grieve...and then I kick into gear and offer all of the support and assistance I can, though we are miles and miles apart. 

I wept...the tears were ten years in the making.


  1. I cried too because that could be me writing the same post in 20 years or so.

  2. You touched my heart with this post. I will tell you this much, over the many years I have taught kids with autism or who are on the spectrum, I know they have all had gifts, talents and, unfortunately, no mouth filter. They make their observations out loud which are often perceived as negativity and rudeness. If people could get past that and realize they are only expressing opinion. I have witnessed over the years how eliminating MILK and dairy products has absolutely altered behaviors. There is something to that casien theory.

  3. But you will be a great help to your daughter. I think through everything you have gone through with your son, you have grown. You inspire me all the time.

  4. Oh Kim I'm so sorry. Yet you will be so helpful to them as they face this struggle. You will be able to provide all the advice and help and support and information that you didn't always have, and I'm sure it will make a world of difference. And go ahead and cry. Sometimes it just feels really good and healing.


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