(Note: This post was written exactly 1 week ago on the day of our meeting described below. Don't worry, I am a little less psycho now. Must be the pregnancy hormones!)
I love reading blogs. Blogs of friends and family that I know and also blogs of total strangers that I will never meet. It is natural I think for those who write blogs about our families to want to portray our best sides, how happy we are, how adorable our kids are, all the fun things we do and that is all great and true. To a point. But the reality is that life throws us curve balls and often times those curve balls really knock us on our butts. The reality is that life is hard and we all have struggles and things that don't paint such pretty pictures. I think it is important to sometimes share those things, too.
Today we had a meeting with Cooper's therapists here in Germany. I have talked some on this blog about Cooper's delays in development, and for those who don't know, Cooper goes to therapy two times every week for some physical therapy and something similar to occupational therapy. Going into this meeting I had some questions for them, and this being the first time that we have had this sort of meeting now that they have spent considerable time with our little man, I was anxious to really get their professional opinions about what is going on with Coop. As these types of meetings typically go, we started with all the positives: how Cooper has improved with development and understanding, concepts that he is grasping, good signs that they see, etc. Next, as with the typical flow of these types of meetings go, we had to discuss the areas of concern, problems that they see, and then of course what the next steps are in treatment and therapy should be.
Now, I know my little boy inside and out. Nothing that was said in our meeting was any great surprise, but that doesn't make it feel any better. We have known since right around 9 months of age, that something just wasn't right. And even though they didn't tell me anything that we haven't already thought and talked about ourselves, at the end of our meeting I felt as if I had been punched in the stomach way too many times.
It is believed that Cooper will not be ready for a regular Kindergarten class next year, but should instead go to an Integrative Kindergarten for children that have special needs.Punch.We have seen kids like Cooper in the past, and it is not possible to predict for you what his long-term outcome will be because the spectrum is so broad. That spectrum being some who grow up with signs similar to mental retardation to kids who function OK in normal schools and settings with their peers but who always seem to have something a little off or some difficulties. (The glaring absence of a description of a completely normal kid who functions well in school did not go unnoticed by Peter or I.)
Punch.It is recommended that Cooper go to a center in Munich for more extensive diagnostic testing. This center specializes in Autism.Punch.While he shows some signs that indicate that he may not have Autism, he shows many signs that are typical of Autism.Punch.At the end of the meeting, I was glad that Cooper went into his 45 minute physical therapy session and I had that time to walk outside in the cold air and just breathe and think. We've always known in the back of our minds everything they told us. But I always hoped that Cooper's delays were temporary. That once he got a little older to comprehend what other kids were doing, he would kick into gear and catch up.
Maybe he is Autistic. Maybe he isn't. Maybe, as a couple of therapists in Augusta figured, he has Sensory Processing Disorder. Maybe he doesn't. We really don't know for sure. And what if he does? Does it matter? Does it change anything? Yes. And no. On one hand it would be great to finally have a name for something that we see everyday and others dismiss and blow off and minimalize. It would be nice to know that there is a reason for why Cooper doesn't pick things up as quickly as other kids. Maybe if there is a name to it, we will be eligible for more treatment options.
But there is the other side as well. It is one thing, for me personally, to say to people "my child is a little behind" or "my child develops a little slower than other kids." It is another thing to say "my child has autism". It doesn't matter how severe or slight Cooper's case may be. People have a preconceived notion in their heads about Autism. I know I do, and it isn't what I want for my child. Sensory Processing Disorder was a little easier to swallow since I had never heard of it and neither had most other people, although the treatments and symptoms for that are nearly the same as for Autism. There is no shame for me if Cooper were to be Autistic, but I would be lying if I said that there wasn't disappointment and sadness.
I want my kid to be normal. I think most parents who are honest with themselves would say the same thing. What is "normal:? Does it matter if your kid is "normal"? Yes, it does matter. No one wants their kid to feel different. No one wants their child to struggle in school or in life. We imagine our children growing up, playing, exploring, active in sports activities, suffering teenage heartbreak, finding love, getting married, hopefully having their own children. Can Cooper do all of these things? Absolutely. Can Cooper still one day be normal? Sure. Is there a possibility that Cooper is extraordinary? No matter the outcome he most certainly is. But right now and for as long as we could see his developments, he is not normal.
It could be a lot worse. This isn't cancer or leukemia or any terminal illness. There are parents out there with much larger battles to face than this. There are kids out there with struggles that make them grow up way too quickly and know about pain and suffering that no child should ever be able to comprehend. We are lucky.
Still, I have had a lump in my throat ever since our meeting today (it is after 3 in the morning now). I don't know why I am so consumed and emotional about this, but I do attribute a lot of it to pregnancy hormones. I read to Cooper tonight and then sang to him and rocked him to sleep, enjoying the weight of my sweet growing boy getting heavier in my arms and looking at his beautiful face. All of these thoughts just keep cycling in my head, and every cycle comes down to this:
It matters, but it doesn't matter. He is still the same little boy that he was yesterday. He is still smiling at me with that grin with spaces between every tooth. He still sits at the table with his chin sweetly rested on his hands, elbows on the table. He still does his happy dance popping his knees high in the air and squealing when he is really excited. He still loves chocolate and gummy bears. He still has the cutest little butt I have ever laid eyes on. He still loves to snuggle and be held. He still would prefer to sit in my lap facing me on the sofa with his face inches from mine and make funny faces rather than sit next to me watching TV. He still loves Curious George and Little Einsteins. He still loves for me to rub his back and stroke his cheeks. He still adores reading books. He is still completely obsessed with washing machines and helicopters. He still laughs at Kayla and loves to chase her.
He is the same boy with or without Autism. And how his Papa and I love him can't be changed by a name or label. He is Cooper and normal or not, God created him perfectly for us.
Having said all that, it is OK still to say this hurts. It is OK to say this sucks. It is OK to wonder why it has to be this way and to sometimes wonder what God is doing and doesn't he know we've been through enough? I know it will all be fine. My head and my faith tells me it will, but my heart just hurts right now and the tears keep coming. And that is just life sometimes. Not always the pretty picture we want, but I guess you have to endure the rain to be able to see the rainbows. Our rainbow rises every morning around 7 and he shines bright and colorful and happy all day long.
The next day (Christmas Day 25th) we finally got around to taking a couple of pregnancy pictures. Here I am at 21 weeks (5 months). We are halfway through the pregnancy!
I hope that you all had a wonderful Christmas as well. We are gearing up to have some friends over for New Year's Eve. We wish everyone joy, love, peace and prosperity for 2010. As they say in Germany, "Guten Rutsch!", or a good slide into the New Year!
Kayla can only sit back and watch. She knows that kid ain't got it on right.
