Mainstreaming is a concept that is at the forefront of my mind right now. Claire has recently started to spend 35% of her school day in the “mainstream” environment. So far this has been both a blessing and a curse. Claire loves being around the kids, considering that the rest of her time is spent in a small class with a lot of autistic boys that scream a ton, I can understand. Yesterday it was warm here so I sent Claire in a dress. I didn’t think to put shorts on because it is hard enough to do everything to get her on the potty as it is. Somehow, in transitions from circle to a chair, some of the students observed that Claire was wearing a pull up. I haven’t heard the full story but there were a lot of questions and Claire got embarrassed and upset. This morning the teacher from the autism classroom who really gets Claire went to talk with the mainstream class, answer their questions and close the discussion. I know that she is made of some tough stuff and that she will be alright, hopefully not scarred for life. Just because she had a hard moment, I am not going to pull the plug and put her back full time in the autism class. Easy to say when I am talking about Claire. This morning I went to BSF (Bible Study Fellowship) as I do every Wednesday morning. I had looked into getting into BSF when we first moved here and I had a normal life and was looking for some friends. Unfortunately childcare started at age 2 so I had to wait. By the time Claire was 2 the option of sending her in for 2 hours was not an option so I didn’t go. Rather my life was dominated by children’s hospitals, therapy appointments, IEP’s and eventually grieving. With the start of this school year it felt like a lot of the dust had settled and I was ready to try to step out of my rett bubble and be part of the world. (Huge thanks to Chloe for this, without her I don’t know that I would have attempted this!) Since BSF now takes younger kids, it was a good fit. I could get a two hour break from Chloe and spend some awake time really seeking God. I hadn’t really thought about it, but this really is my attempt at mainstreaming and honestly, I am not sure if I am cut out for it. Today I went out on a limb and shared a prayer request since there was a little extra time at the end before we went to go listen to the speaker (we meet in a small group then all gather). My request was for prayer for me in light of the Thanksgiving holiday, that it was that day three years ago that Claire fed herself her last meal. I really want to be real and genuine in all areas of my life and it seemed like this request was just that. I got a few responses, one woman said “That’s heavy” and another just smiled and said that she would pray. Another turned to me as I tried to bolt for the door and walked with me. She really did try to help. Unfortunately she tried to encourage me and tell me that it would be alright. She went on to say that these circumstances could be protecting Claire from becoming a drug addict when she gets older or some other hard thing. Gotta say this made me so mad! Why is it that people feel the need to cheer you up and encourage constantly! As if there is some sort of social force that says that hard is bad and that everyone should walk around happy all of the time. AAAAAAAHHHHHHHH!!!!!!! I love to be happy, I am often happy. Not always and that is alright. Certain days are harder for me and I am choosing to allow myself to feel as I go through rettland and everything else in my life. I really feel like telling those over positive encouragers that they should try it to. I know that they are well meaning, just like the kids in Claire’s class who ask tons of questions, but it still makes you want to run and hide. I don’t think that I am going to give up on mainstreaming yet, but it is on my radar. We might be moving into the middle of nowhere and starting a rett compound, where there are lots of extra outlets, so all of the girls can sit around and chat on their talkers. There will also be horses and a garden dedicated just for crying.

7 thoughts on “Mainstreaming

  1. let me know where this place is and we'll be there with bells on!!! unfortunately there are some people out there that just don't get it, and never will. others have been very supportive and try really hard, but no one understands like our rett family. p.s. the beginning of your post had me wanting to pack up my stuff and come tell some kiddos off!

  2. mj says:

    oooh – that rettland sounds nice. let me know when you get the funding. 🙂

    don't give up. three cheers to you for giving it a try. just keep showing them the real colleen and they'll get it someday.

  3. count me IN on the compound, say the word and Annie and I will pack our bags. I know what you're feeling, I've had that same exact experience in a prayer group like we can pray about everyone else's “problems” but this one is just too big, they aren't sure what to do or say about it.
    sidebar: I think it's AWESOME that Claire is being mainstreamed even if the kids are asking questions they will be better for the experience as will Claire – despite embarassing situations. I think that you, my friend, need to write a book on how you go about all of this, you are an amazing mother that advocates so effectively for Claire and your entire family. So blessed to know you!!!

  4. I second both the Rett compound and the book. I would absolutely buy it. You do an amazing job with Claire and Chloe. I've learned so much from you already.

    Sometimes people innocently make a remark to me that makes it so obvious that they don't have any idea what is going on with Abby. It's hard when others just don't get it.

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