Wednesday, April 26, 2006

A year ago... (Journal #18)

A year ago...we first heard someone tell us what we already suspected. "Your son has Autism." Are you sure? He just likes things a certain way. He lines up his toys instead of playing with them because he is too mature for toys and he is bored (that is what daycare thought too). He just has to have his socks put on first because........or he just flicks his middle finger and thumb together because his great Grandma Cottington used to do that. "Are you sure he isn't Asperger's though?". Hmmmmm....straight up Autism. Okay.

I wish Brent and I could have looked at things so simply. While I had suspected it since Sam was 4 months old off and on, it still slapped us on the face when we heard it from the first psychologist.

When working with the school assessment team for the educational diagnosis, the teacher in me tried to act all cool, like I knew everything. Yah, right. I was freaked. I remember crying to myself in the middle of the night. I remember Brent and I replaying everything Sam did since birth. I would question it saying, no it can't be because he can do..... and then Brent would say, yes he is, he does this and this and this. Brent and I would challenge each other, question each other, try to doubt the diagnosis, but we always came back to "we know better, quit denying it." We both knew in our hearts that he had too many of the symptoms, the lack of speech, routines and rituals that ruled our life, difficulty understanding us, tons of sensory issues, motor issues, loss of skills he had, incredible infatuations with weird objects and things, he drooled, had problems feeding himself, he seemed fearless, pain free, all to name a few. At 18 months he could count to 20. At 4 years old today, he needs help counting to ten and sometimes 12. He forgets colors and things he has known before.

We got the educational diagnosis first. When the school psychologist told us their final results, it was a beautiful spring day. I was teaching in my classroom at school when I got the call (previous contacts had eluded to autism and they had been using the word with us frequently, but it was just getting that final confirmation call....ugh). It was Brent first. He was with Sam. They had just left the last day of his testing. Brent said they confirmed the "autism" word, and that I should call the psychologist myself, to see if that is the same thing I would hear. So, during a break in between classes I called her back. It was true. Brent was hearing things right.

The rest of the day I spent at school, while Brent could not go back to work. He couldn't. He needed to be as close to his little boy as he could. He yearned to start seeing things the way Sam did in his own little world. His eyes tells us everything about him.

After hanging up the phone, I couldn't stay in the classroom in front of my students. I teach alternative education to middle school students. The most challenging students in our building and district. Many are involved in gang (wanna be) activity. While I connected with them, showed compassion and care and love for them, there was still a side of me that could never let them see me cry. Having my co-teacher and EA still in the room, I excused myself then ran to the bathroom to have a good ole cry. As I was coming out, I will never forget that God had me literally run into one of my best friends, confidant and co-worker in the building. R was who I needed to run into. She noticed my face and of course I spilled my guts within seconds. I will never forget our walk around the school building that day. At the end of our walk (when I needed to be getting myself back in that classroom acting normal), R said to me, "Laura, God couldn't have given this to two more perfect people. He knew you could handle it and make great things with it."

"I can handle it?" Yeah right. Like I try to be this great Christian or something. Who am I that would be so blessed to have this happen too? is there that I stopped any conversation with God about this in a negative light. I really did. I never once blamed God for this neither did Brent. Although I do blame myself still wondering about my pregnancy and care and exposure to the environment that I may have done. My first child was premature and now the second autistic. Maybe I just did not do prenatal care as good as I thought. I know I slipped in a couple extra Diet Cokes with Sam. Oh, who ever knows. What I do know, is that R provided for me that day, something that a mother might do. It felt warm, caring, and she is always sincere, and I will be forever grateful that she was in my pathway as a charged out of the bathroom that day.

While all this was going on with me at school. Brent had resided to take the rest of the day off and go to the park with Sam. I received pictures via our camera phones that Brent sent of Sam playing in the rocks. Brent just wanted to take him all in and love him till the ends of the earth. I have truly been blessed with an incredible man. As the school day seemed to go on forever, I couldn't wait to get home, pick up Zach from daycare and join up with Brent and Sam.

After school was out, I started to panic. Wait, we need a medical opinion, we need a second opinion. How can this be? As I drove to get Zach, I put in a call to Sam's doctor to tell him what we found out and to find out what we do from here. I had to leave a message, but I knew he would call later.

All we wanted to do tonight was to spend time together (Brent and I) to process, to figure it all out. But, as is life with little boys, our night was crazy. Brent was taking both boys with him to Zach's soccer practice while I was going to attend (ironically) Zach's parent meeting for the districts talented and gifted program of which he tested into. On this day, literally, one child was staffed into our districts special education program, while the other was staffed into TAG.

I was waiting in the parking lot when Dr. Kuperman called me back on my cell. I was so upset and still denying, but he was so kind and caring. He said he wasn't real surprised and told us exactly what we should do next. He had referrals ready the next day for speech and OT therapy. He really helped to calm us. He even gave us some suggestions for some thorough medical diagnosis too, and where to seek those.

Finally bedtime. Brent and I could be together alone, to talk, to be sad, to be mad, to wonder, but to smile too. Whenever we talk or think about our two beautiful boys, they just make us smile. Even when it is sad news.

It is a year later. Sam is speaking so much better. We are still in speech and OT therapy, he also receives therapy at school in his early childhood/special education program.

While we have no clue what his future will be like, we do know this...
...that God is bigger than all of this and can take care of us
...that Autism is not a death sentance, it is just another way of life
...that if you keep humor in your life, there is less pain
...that if you keep family close, there is more love
...that if you live for each day, each moment will last forever!

A year ago....we thought our world would end.
Today...we are better, closer, more in love with God, each other, and the world. All because a year ago...we learned to look at the world more differently and unique, through Sam's eyes.


Wendy said...

Wow...what a tearjerker! We've all been through that terrible diagnosis and the days/months that follow. When C was diagnosed my husband was in denial. I used to drive to the local grocery store parking lot and cry for two hours while I was supposed to be taking a French class (for a trip that never happened). It's so great to hear your positive attitude and outlook. Keep up the good work Mom!

Anonymous said...

zowie... And I just read this on/around the 1 year anniversary of our son Solenbum getting HIS diagnosis. It's amazing how we seem to go through Kubler-Ross' 5 Stages of Death and Dying with a diagnosis like that: denial, anger, depression, bargaining, acceptance.

Mine goodwife is fond of saying, "look at the bright side-- it's ONLY autism. It's a life-LONG condition, but thank God it's not a life-SHORTENING condition. He'll die WITH autism, but thanks be to God that he won't die FROM it."

I like to take those words out now and then: "it's ONLY autism." It puts things into perspective. We are a fambly, we shall survive, Sol shall grow and emerge from his autism in time, and we are all healthy and happy people. I'm severely nearsighted and have ADHD and clinical depression. Sol has autism. Know what? We'll live and adapt and we'll thrive.