The "A" Word

This is a post I didn't really want to write about for a long time. I still don't feel like writing about it, but it is important. Since Cameron was about 18 months, we thought something was a little "off" about him, but we just chalked it up to what everyone said about boys being a bit slower than girls, especially in talking.  I have like no experience with little boys, having mostly grown up with girls in my family and girls as neighbors, so I believed it. Then his PA at his 18 month check up said she thinks he was fine...but we thought differently. I can't blame her, since she specializes in sports medicine and the stupid insurance just told us to go to her, but we switched doctors and saw a new lady in Midtown. She was AMAZING! She got us into a developmental pediatrician, Dr. Taylor, so Cameron could get checked out there and officially diagnosed if need be. She told us that the diagnoses will give us access to all sorts of therapies to help him, so don't be afraid of it.

I still am a bit afraid of that word though. The "A" word. Autism. I have NO experience with it.Bobby has minimal experience with one kid in his class having it. Apparently we met a boy with autism before and I had no idea that he had it. That's how clueless I am about it. How am I supposed to help our sweet little boy if I can't even spot it??

So before this month, we went to this place to get him evaluated for Sooner Start, where a therapist will come to your house and helps your kid until he's 3, when he goes into Jenks Public Schools for a special class to help them more, which is such an awesome program and I'm so thankful they have something like that. That's when they said they thought he has autism, but it wasn't official. 

We saw Dr. Taylor this week. I had a huge questionnaire to fill out about our Cameron boy, and then we met with her. She was super nice!! Well, I was shaking, terrified to see how "bad" his autism is. You always picture this perfect life for your kids, and when something like this happens to them, it hurts. You don't want them to hurt. You don't want them to be made fun of for stuff they can't help. You want to protect them from everything and anything. But you can't do that. You need to give in and let them live, so I gave myself to this process and prayed that he can have the best help possible to be the best Cameron possible. 

She looked over everything and told us he's in the slight Autism range, which was NOT what I was expecting. I was expecting a lot worse, so I was very happy. With all the help and therapies out there, he can get the help he needs and possibly be fully functioning someday. I hope and pray for this with all of my heart.

People say that they wouldn't change their kid with autism for the world. They say autism makes them who he is. Well, sure, I wouldn't change Cameron AT ALL (well maybe make him listen to us better, hahaha!), but you bet your butt if I could take the "autism out of him," I would and would give anything to do so! He has a tough life ahead of him. He may not ever talk in sentences. He may not ever be potty trained. He may have to live in a facility as early as his teenage years, but I will not let all this happen to him without a fight.

At first I was all like why him? He is the sweetest little boy and is so cute and has the best smiles. He is so smart and knows all his letters and numbers, something Bianca never did at this early of an age. Then I was like, why me? But not why me in a selfish way, more like, I have no clue what the hell I'm doing, why would you choose ME to take care of him. I'm learning that the whys don't matter, but it's the other questions that do. How can we get him the best help possible? What else can we be doing? What other treatment options are out there? etc.

My visiting teacher recently moved to Kansas. Her son has autism, and was the boy I talked about earlier where I couldn't tell he had it. She's worked hard with her son, and he is AMAZING! Can't even tell he has autism. Before she left and after all of our trips, we all went out to Ted's for a farewell dinner. I told her about Cameron then. She sent me this email and it is absolutely perfect to sum up how I am feeling.

Dear Erika,
You may have seen this before.  I have gained great peace from trying to find joy in my own "trip to Holland."  I hope you and Bobby will, too.  Sweet Cameron is so blessed to have you, and you are both blessed to have him.

Love ya,
Rebecca


http://www.our-kids.org/archives/Holland.html

The link reads:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



It's been a long time since I've cried this much, but I don't let it overtake me when it come to doing everything I can for him. If I seem a little off recently, this is why. I know this feeling of shock or whatever will pass, but it's just...hard. Especially trying to be the strong one for everyone.

We love you Cameron and will never stop fighting your fight!!! You WILL be the best you can be, and we will love you and be there for you every step of the way. We are so blessed to be your parents and we are so humbled that we were entrusted to take care of such a sweet soul as yours. Thank you for being apart of our family. I know you will move mountains someday. Plus Holland is an absolutely beautiful place, just like you. <3