It is a common assumption in our society that high risk is often paid off in high rewards. I have never been one to shy away from risk, after all, I consent to my husband riding a Ducati, in the Santa Cruz mountains. Recently I was given a choice that required a risk of the highest investment, Claire. Our school district contacted me last May. The classroom that Claire had been in, a county program at our local school was being shut down. We had the option to place her in a classroom for those more severely affected further from home or to place her in a new classroom at the same school. It seemed like an easy decision at the time, she should stay at the same school, close to home, in a class with kids that were higher functioning. Side note:stomach turns at the mere thought of higher functioning and more severe as the options. Being in a county program at a local school was oddly isolating, as much as everyone wanted to pretend that it was all one big happy group of kids, I had a hard time feeling like Claire attended the actual school as opposed to just the county program. I was very optimistic about how great it was going to be just being in the special ed classroom on campus. I don't know what I pictured but as we are getting closer to the start of school (roughly 10.5 hours away) I am realizing just how delusional I was. At first I was a little concerned when Claire's class was left off the class roster that was posted at school last week. It bothered me that the students in Claire's class were invisible but I thought that maybe it was a small clerical oversight. Then, it all hit me like a ton of bricks today, as we went to the meet and greet. First we went to visit our teacher in the special ed classroom. She is wonderful! She believes in Claire. After meeting a few of the other students in that class we wandered over to her 1st grade classroom (she is repeating 1st grade due to a lot of environmental craziness) to see her teacher that she will be mainstreaming with again. As we crossed the campus I heard a lot of children say to their parents, "there's Claire!" However, not one said hello to Claire. I wrote it off to start of school jitters. After 1st grade we headed over to meet the new school nurse. She was busy and called to talk to me later. Claire is missing a few immunizations. I explained that due to the regression associated with what we did not know at the time to be rett syndrome, we missed some but were working to be caught up. Her response shocked me. She felt that it wasn't a big deal because the kids in Claire's class didn't really mingle with the rest of the students. As she said that I couldn't respond as I was just trying to keep breathing without uttering a string of profanity at her ignorance. I somehow muttered that Claire was also in a reg. ed 1st grade class and she suddenly remembered that and went on with the rest of the interview. Between being left off the class list, being talked about and not to, as well as the assumption that Claire need not be immunized since she isn't around that many children, I realized just how much was at stake, a lot. It is risky to challenge the status quo. Perhaps it would be easiest to just stay in her special class and not make the rest of the school see that there are people who are of high value and cannot walk or talk. I am scared. Claire is in the best place that I can remember in years. She is thriving. Tomorrow I hand her over to a new teacher, an aide who is wonderful but new to Claire and this role and an environment that does not lean in the direction of true inclusion or overall understanding of people with disabilities. Things can go one of two ways. Either I will be right, Claire will scream when she feels isolated and scare her aide to death when she stops breathing due to anxiety, she won't eat for days and spiral into a pattern of seizures or it will go better than I could have dreamed of. Classmates will be yelling goodbye to Claire as I take her to the car and her aide will be telling me how seamlessly Claire pulled through her episodes and all of the fun they had through the day as they learned lots of fun new things. I really hope that I am wrong. I believe that I might be, rather hope that I am wrong. It is just so scary when the risk that you take is with your child but at the same time, if we had just retreated to the county program far away, there would have certainly been very little reward. So here is to hoping that my next post is about how you shouldn't judge and how great school is going!
When I was in high school I got to spend a few weeks in Antigua, Guatemala. I was part of a group that was spending time at a hospital playing with babies. These children had cleft palette and needed surgery but were too small to be operated on. Our job was to play with them as it was explained to us that they would grow better in a stimulating environment. Fast forward over a decade or so and I am presented with another similar situation. Due to the complications from Claire having Rett Syndrome we are constantly fighting to put weight on her to avoid a feeding tube. For years she has been on the edge of healthy. At 6 and a half years old, she was a whooping 39 pounds, with her shoes on. With a solid five week break from school, I thought it the perfect opportunity to work on a few things, one of them being Claire's weight. I figured that I would make calorie rich lunches and carve out a solid hour every day to make sure that she had enough time to eat as much as she possibly could. Funny, how whenever I try to plan and organize what I think is best, somehow a better plan emerges. I must say, the plan that haphazardly came together, is far better than what I had thought of. Claire and I have come to call it the Verve Diet. It started out of desperation, like most of our life these days. I was exhausted and down after a morning of seizures and just wanted to sit and pretend that life wasn't that complicated for a few minutes. So after sitting in the car while Claire slept off the crazy head stuff we went to Verve for coffee and a treat. Claire opted for a good fellow which consists of puff pastry, some sort of custard and olallieberries. It worked well so we did it again the next morning and the morning after that. In fact, we have now done this every weekday morning since summer school got out, almost 4 weeks. I had noticed that Claire seemed a little heavier so we weighed her. Words cannot express my joy/relief/pride when she weighed in at almost 44 pounds, that is a 10% increase in 4 weeks, never in her life has she gained like this. Needless to say, wishing to build on this huge success I decided that we should continue our daily Verve Diet. So this morning, we dropped Chloe off and headed straight there. As we came up to the register Jillian greeted Claire and asked her if she would like a good fellow today. Claire beamed a smile and looked right at them in the case. Jillian then continued to talk to Claire about which one she would like and picked out the 'best' one for her. As I stood and watched this interaction, a giant light bulb went off in my head. It's not just the calories in this delectable pastry that are helping Claire to be so healthy, but everything else around it. Each day not only does the staff greet Claire, there are several customers who say hello to Claire by name and ask her something random because that is what people do at coffee shops. There is normally some two year old little boy who breaks away from his parents and tries to push Claire and she loves it. It's a special little place where we don't have to explain anything, people just smile and not that, I'm sorry this is your life smile, they just smile. It starts her day out feeling accepted and appreciated. In the process of sitting and enjoying a good fellow every morning, not only has she gained a few pounds and improved her oral motor skills, Claire has become more comfortable being a part of the public. In rettland it often comes up at how scary it is to share our children with the world. We fear them being a bother (screaming is rather socially unacceptable) or people saying hurtful things even when they are well intended. This morning I was reminded not just of what Claire can add to a group, but just how valuable that sense of being in the normal world is to her. That is why the Verve Diet is now my favorite, better than a sensory diet, ketogenic diet or gfcf diet, it's is a safe bridge between our crazy life and the rest of the crazy world and best of all, exactly what Claire seemed to be needing.
I think back to last summer it was a very challenging time. The healing process from the madness had started but transitioning to life as normal felt like a space shuttle re-entering the atmosphere and we were having to fight just not to burn up (I wrote about it here if you care to read). It felt like life kept ripping off my scabs before they were healed. Each day, I tried to manage all while fighting to find some extra space to make sense of the chaos that was still swirling in my heart and my head. I had been feeling and like most new things, it was hard. A year has passed. A lot has changed. The scabs have healed and I am left with very visible scars. Chloe is potty trained and and can feed herself without making a mess so there is a little less busy work for me. Yet, Claire is heavier, stiffer, she shakes and stops breathing more often. It is hard to see how over time, the chasm gets bigger, one child becoming dependent and requiring less while the other seems to need more help. The gap doesn't rip me into pieces every day like it used to. There is an odd rhythm of crazy that fills our days. It generally includes periods of laughter, community and strength along with heartache, loneliness and weakness, some how all woven peacefully together without too strong of a sense of being overwhelmed. I'm sure that there is more going on that I am absorbing that I just haven't rested enough to know what it is yet. For today, I am taking solace that this summer, we are operating in survival mode, not crisis mode. All efforts go to the basics, eating, sleeping, therapy and so on. Energy is conserved whenever possible and you just keep putting one foot in front of the other. But it doesn't feel like the ceiling is caving in or that the heat of re-entry might burn me up before I get my feet on the ground. I must say, that is a great feeling to not be experiencing.