January 27th...A day I'll never forget

I really will always remember January 27th. In 2006 on that day we found out Caitlyn had Rett Syndrome. It was a shock to us all. We were still so sure that she was merely "delayed" and she would indeed catch up. I never expected to be filling out SSI forms when my daughter was days away from being just 2 1/2. I never expected that words like: gait, apraxia, seizures, melatonin, praxis, scoliosis, motor planning, oral motor issues and many more; would become part of my vocabulary. Going into the appointment on that day, I knew that we were most likely going to hear that Caitlyn had Rett Syndrome. I still wasn't ready for it!! How to you ever prepare yourself for such a day? You can prepare for giving you kids the car keys the first time, or for their first date, graduating from college or even their wedding day. But how on earth do you prepare yourself to face the facts that those wonderful days may never happen?

Last years anniversary was a lot harder. It had only been a year! I think I just cried all day! This year was a little different. I worried about it for days before, wondering what it would be like. I wondered if I would make it the through the anniversary with my friends typically developing 3 year old running around my house. I wondered if I was going to make it through feeding Caitlyn a meal without breaking down and crying. I wondered if this would be the year I accepted everything, and moved passed remembering January 27. I have not accepted everything, but I get closer every day. Before Sunday, I never in a million years thought that Tuesday (the 29th) would come and I would realize then that all the worrying I had done was for nothing. January 27th passed this year just like any other day. Now today, I sit here feeling a little guilty that I didn't remember on that day! I can't believe that I didn't break down. Does this mean I'm finally heading the right way on the road to acceptance? I pray every day for that to be the case.

Now that we have spent two years in Rett Land, families are moving here after us. I feel so blessed when families find this blog. It means so much to me that I can say to another mom: "I've been there...Yeah, I remember what that first year was like." or "I remember when Caitlyn did that...here is what we tried." Of course, I still am constantly going to those that have been in Rett Land longer. (you know who you are. Two years seems like nothing compared to the time you guys have spent here. I see what you have done for your daughter, and know that I am as capable as you to advocate for and teach my daughter. Thanks!) Together, as Rett parents in this land, we can hold each other up and strive to the next step. Together we can hope and dream for a chance to move to a new land. I never asked to move here...but 2 years ago I never imagined I meet the people here that I have. Amazing moms and dads (and Grandma's...) that would do anything for their kids. I feel so blessed to have gotten to know each and every one of you. I lift my glass and say "Here's to another year in Rett Land: The most unfair place I've ever been...But also the most supportive!" I'm pleased to be part of the greater Rett family.

Kindergarten is coming...and we have three choices

When a typically developing child prepares to enter Kindergarten, all the parents have to do is walk in to their neighboring elementary school and register them. Oh if only it were that easy for us! When we left our beloved birth-3 program, there was only one option for preschool. It was a scary change, but doable because all we had to focus on was transitioning Caitlyn with as little stress on her as possible. This time, it's not so easy.

Caitlyn will be 5 in August, so we have started discussing with her teacher what will happen next year. Our first brief discussion in November resulted in him saying that she would most likely go into DK (developmental kindergarten). Last week, he left a message on our phone with 3 options. (we are going in on the 25th to talk more about those options). Our options were:

1. DK (which basically is a continuation of what she is currently doing, just located in a regular elementary school)
2. General Education with a 1:1 aide (this is your typical every day Kindergarten class)
3. Self Contained classroom with high adult:student ratios (this is your old fashion "special ed" classroom, which in our district most likely means a "special school.")

Before I go on, let me just say that option #3 is not an option for us at this time. In my mind, putting children with special needs in a separate class or, even worse, a separate building is telling neurotypical children that they are better than the other children. I want my daughter treated like an equal in the school system. She has a right to be around peers her own age. With that being said, I know that general education isn't necessarily every parents choice. And that is the beauty of our country. IEP stands for Individual Education Plan.

So by the process of elimination we are left with options 1 and 2. The ideal situation would be DK (with a 1:1) followed by general education in 1st grade. Unfortunately we can't be promised that. So we are left with the question of whether or not our 5 yr old is ready to be put in a general education classroom. It is such a scary thought to throw her into a general education room after all of her schooling so far. My own personal belief is that she should be in that option #2 classroom, and her dad seems to be on board with that. What is scary is the question of if that is what is really most appropriate for her. The benefit to choosing #2 would be that if it doesn't work out, we can go down to option #1. With general ed you risk the chances of getting a teacher who is not fully accepting to Caitlyn being in the room. That is another scary piece of the whole puzzle.

And as if this wasn't all complicating enough, we are moving in June. So even if we were to observe the teachers in our home school to see if one is a good match, we wouldn't end up in that school come September. Of course this does, in our minds, present option #4. The neighboring school district is Northshore School District. We are considering a move into that district. They have an inclusion elementary school. Every class in this school has a make up of 15 typically developing students, and 6 on IEP's. The teachers are all certified in both Special Education and Elementary Education. This would be by far the best option in our minds. It would meet my wishes to have her around typical peers, while still giving her instruction from a teacher certified in Special needs. Also, call me crazy, but I think that being one of six would be better than being the one and only child with special needs.

So that is about all for our options. Now to figure out how we are going to make our choice. I will update after our meeting on Friday with any new information we might have to take into consideration. We have had a special request for more pictures, and let me tell you that was my intention and plan for 2008. I just need to get the camera and leave it on the table for picture taking! For now, I will take one tonight when Caitlyn gets home and add it. Take care everyone.