Yesterday, I talked a little about grieving for The Way It Should Have Been when I had a premature baby with many special needs who was eventually diagnosed with developmental delays, communication disorders, and autism spectrum disorder (ASD). T-Rex is more on the Asperger side of the scale, which becomes more evident the older he gets.

I think every parent who faces these challenges has experienced some sort of grief when the diagnosis is given. I did. I wondered how profoundly ASD would affect T-Rex. Would he be able to live a productive, "normal" life? Would people treat him differently? Would I treat him differently? The questions bombarded my tired mind until I thought I would crumple under the burden.

As time went on, though, I began to learn a few things about T-Rex, the world around us, and myself. I think the hardest thing at first were the rude stares we would get every time we were in public and T-Rex would have a meltdown or start stimming.  I finally found a bumper sticker that said, "Does my autism make you uncomfortable? How do you think your stares make me feel?"

Then there were others who would see him on really good days, look at me like I was some kind of liar, and say "Oh, he can't have autism. Look at him! He just said 'hi" me."

I wanted to say, "Yes, he just said 'hi' because we've been working on that goal with him every day in therapy, teaching him how to engage, say hello, and talk to people he meets. We're very proud of him. But - please don't judge us because you're only seeing a piece of the puzzle. You don't live with him, and you aren't the one doing all the therapy with him every day. So don't discount his hard work and progress by playing doctor and giving us a diagnosis when you don't see the whole picture."

Our goal is to have T-Rex function as optimally as possible in public and social settings, and in his daily life. When some people say they don't see the ASD (because T-Rex is verbal), I rejoice because that's an indication the therapy is working. But, don't give us "the look" like we're a couple of hyper-worried parents who just made up this diagnosis off the top of our heads so we could give our son an excuse to scream at the top of his lungs in Wal-Mart. He was seen by numerous professionals and specialists who went through the criteria with us as they evaluated T-Rex, and they diagnosed him.

In public, people's unspoken implications and looks said I was making excuses for his behavior. It took me a long time to stop caring what people think. It's very hard for me to admit this, but it took me a long time to not be embarrassed in public when T-Rex melted down or stimmed. Not because of him, but because I thought it somehow reflected on what kind of parent I was. I still blamed myself for having him prematurely. Looking back, I realize I did all the right things health-wise, he just was born when he was born for whatever reason. But then, I still blamed myself. I wondered if the ASD was a result of his prematurity, and therefore, also my fault since I couldn't keep him safe in my womb?

Then, a few months ago, I finally woke up. I realized what a gift God gave our family in T-Rex. The Creator of the Universe entrusted a tiny bundle of vast potential into our keeping. God knew what I had inside me to make sure this little boy grows into a young man. Who knows what great things T-Rex will do? And God gave me the privilege of raising him.

I had made ASD such a big part of our lives, when there was so much more to consider. Even though it is a pervasive part of our lives, ASD isn't who T-Rex is - it's just piece of the puzzle. He is who he is, and I love him so very much. Does that mean that I become complacent and not find out all I can about improving his quality of life? No way! I will always see what I can do to make things better for him. I will never stop researching, learning, hoping.

But I no longer grieve. And I no longer sit around wishing for The Way It Should Be.

The Way It Is is so much better! Here's The Way It Is:

I have four beautiful children, each unique, each so very loved by their dad and me!

I have been given an opportunity to grow, to learn how to lay aside my own selfish desires and trust in the knowledge that all things happen for a reason.

I have an opportunity to turn our family's pain into a source of help and comfort to others who may experience what we have. That has already happened several times. Who knows who you will meet when you are sitting in the waiting room at the doctor's office? I've had some great conversations in hospital lobbies and doctor's office waiting rooms. I probably would have never met these people in another setting, or if I had, I would have passed them right by without realizing the treasure inside them.

Through T-Rex, I have a rare glimpse inside a different perspective of people and the world in which we live. I don't always understand it, but I try. It has helped me be more compassionate, understanding, and appreciative of those who are different than me.

I am truly blessed. I have a great family and a great life. My circumstances don't rule me. My attitude about my circumstances makes all the difference. (I have to pray about that one every day, but I'm getting there - one step at a time).

No, I absolutely would not change The Way It Is for The Way (I Thought) It Should Have Been. What I have now is so much better than what I thought was right. What I thought was a great loss turned into the greatest blessing I've ever had! And who knows what great blessings the future holds. . . 

Posted by Mama9blessings

I have tears in my eyes--I've read both parts and can so connect in a different way. I have felt the same with the losses we've had (13 miscarriages and 1 stillbirth). We can so easily get lost in the "what-it-would-have-been-like" game. And the "if-only-I-had-done-this-or-that" game, too. Of course, you can't deny reality (for me, little gaps in our family), yet, as you said--these things are gifts from God. We won't fully appreciate it until we're in Heaven, but for now, HE gives the strength we need.

I've had a dd airlifted due to a fall from a barn loft--I totally understand! And I hear those helicopters before anyone else in my family, now!

I had a teacher write this quote in my autograph book once (boy, does that date me! : )

"The only difference between a stumbling block and a stepping stone is the way you use it."

Sounds like you have turned this into a beautiful stepping stone in your life!

Wish I could give you a hug! Here's a cyber one!

{{{HUGS}}}

Blessings to you as you seek His face for your family!

Trisch