It has been a strange week for me as far as this "disability thing" goes. I know I have said here before that I think about Down syndrome everyday. I don't think this is an unhealthy obsession but just a fact of life. Most days I glance at Ryan and think to myself, "My kid has Down syndrome." I don't dwell on it. I simply think it and move on with whatever I was doing at the time.

There are other days that I catch myself staring at him. I look at his features. I see his almond shaped eyes, his short fingers and his tongue resting on his lower lip as he concentrates on the book he is "reading." I contemplate the impact he has had on my life. I think about how he has impacted the life of everyone in our family. I think about the things that I can't control. I think about the things I shouldn't worry about until he's twenty. I may even go as far as to walk over to him, touch his beautiful, blonde hair and kiss him on the top of the head just so I can hear him say, "Thank-you, Mommy."

Then there are days that turn into weeks. It has been one of those weeks. I came off the weekend still thinking about the grief workshop I attended on May 2nd and then there was Ryan pretending to be an escape artist on Tuesday. I came home that day from Rourk's office and took a few hours for introspection. This so-called introspection tumbled into Wednesday, then Thursday and into today too. A few decisions and conclusion have come from it.

We've decided to send Ryan to the Meyer Center five days per week next year and not send him to K-4 at Berea First Baptist in the fall. The first half of this year went very well there, but after Christmas things started going down hill. I am not going to go into all of the details, but two things I want to make clear-- the decision was not made because of Ryan's academic ability or because the school put any pressure on us. The decision was made because we think it is the best one for Ryan.

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On Wednesday I followed a link from Anne's blog to a post written by Emily Elizabeth over at Lovely and Amazing. Go read it now and then come back and read what I have to say.

I have read her post four, five, maybe six times. The first time I did so because Anne always recommends great reads. The post brought tears to my eyes. The other times I read it because her words validate so much of what I have been feeling. She talks about being her daughter's greatest advocate and that she must always remember to see her for her. I do see Ryan for Ryan. I see Ryan, his extra chromosome, his disability and despite all of this I have been guilty of pushing and pushing and pushing. I have been guilty of doing for me and not him. And by doing for me I mean doing for my ego.

That stops now.

Emily Elizabeth wrote:

It was in that moment that I realized how precarious the path I walk with Emma can be. As her mother, her greatest advocate, and her biggest fan (though, in all honesty, I'm not the only one to lay claim to that status) I have to always remember to see her for her, in every single way. Her uniqueness, while certainly nor should it, be hidden away. She should be celebrated, not merely accepted, and in order to do that I have to always be honest about who she is. To deny the challenges that her extra chromosome present is to ignore the joys that wouldn't be possible without her little bit of extra. While I don't want to lower my expectations because she has Down syndrome, I also don't want to hold her accountable to unrealistic expectations that would eventually make her feel like a failure.

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I have concluded that there is nothing wrong with special education. Does my saying this make you furl your brow? I'd understand if you are doing so right now and thinking, "Well, if you thought something was wrong with special ed then why have you had your child in it since he was an infant?" I have had my child in it since he was an infant because that is where he can receive the therapy services that he needs to help him with his developmental delays. Where I have struggled is accepting that he may need this service/model of education for the rest of his life. I mean, I do get that, but you have to remember that I was born in 1969. I went to school thinking that dumb kids went to special ed or resource. I didn't understand that these children had disabilities. I don't recall anyone explaining to me that Mike W. waved his hands in front of his face all the time and had a severe speech impairment because of a disability. I just thought he was weird and was a bad kid. I grew up in a time when we didn't talk about stuff like that and it has left me with a very negative impression of special education. It's is hard to shake that. It has only been in the last six month that I have started believing that special education may be Ryan's means for receiving the best education. It may be the path of least resistance for getting what I want for him. It has only been this past week that I have decide I need to educate myself about the IEP process, education law, teaching methods and who knows what else to make sure I know how to be an active participant in getting Ryan what he needs to be successful in school. It has been easy up to now, but that's about to change with grade school looming in the near future.

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But you know what else? I am going to keep dancing with him to Elmo and Jack Johnson and Allison Kraus. I am going to play hide and go seek even though he never actually hides. I am going to cheer him on. I am going to laugh with him and most importantly I am going to love him for him.