I honestly didn't think it would be possible, but we had a great Thanksgiving. Even better than that, we had a great Thanksgiving weekend. I knew that we were going in the right direction when Wednesday started well and before things got out of control, Jared called saying that he was on his way home. I got the pleasure of leisurely shopping all by myself for those last few things I had forgotten. One of the great things about living in hippieville is that they all grow their own organic feast so they weren't all in Costco, it was creepy how few people were out, but it was good. Since I was relaxed and had time to do whatever I wanted, I went to Whole Foods to get some cheese and olives so we could have a nice antipasti for dinner. Much to my delight, while I was there they announced that the fisherman had just caught a bunch of crab that morning and he was there selling them, already cracked and cleaned. How could I not? It was such a great end to a day, just a Wednesday, but none the less a day that we decided to celebrate. I think that part of why I have such a hard time with holidays is because it sometimes feels forced. Be thankful NOW give gifts to people NOW and the only reason why we do it on that day is because everyone else is. Of coarse it is fun to do what everyone else is doing but sometimes you just don't feel like it. With the history of Thanksgiving day being as sad as it has been, it felt so good to genuinely celebrate the day before it. It just felt good to genuinely feel, something that is really hard to do when you are as tired as I am. So with the momentum of our crab feast and two happy little girls we went into...dundundun...the holiday, and it was good. I got to cook all morning at a casual pace while Jared watched the Macy's parade (which makes my skin crawl) with the girls, it felt like a pretty normal family, weird right? We went to a friends where we deep fried a turkey, which is awesome, vasts of hot oil make everything better, Chloe played with Luke and Claire fell asleep watching football after showing off her super awesome standing skills. We went home super full and it was good. Friday stated a little slow, we didn't know what to do and somehow we ended up going shopping. You didn't think I was going to say THAT did you? Claire and I hit the Carter's store for a bunch of super comfy clothes for both of the girls, we even got matching holiday pj's (see flickr to right). Feeling the exhilaration of having completely lost my mind, we went to the BIG mall. I have a special place in my heart for The Body Shop. Jared loves me so much that he dropped me off and fed Claire lunch while I went in there all by myself! The smell of that place takes me back to my senior year, back when I could take 4 bathes a day if I wanted. I did the unthinkable, I purchased 4 things and they were all for me. I have made an early resolution starting today, I will take a bath or a long enjoyable shower at least once a day. That's right, I am going to take 20 minutes every day just for me, I am so excited! I am completely amused that it took black Friday to get me to go out and do something like this for myself, God does have a good sense of humor. The weekend was great as well, I enjoyed a bath, Claire and I went to see Tangled and we purchased our first Christmas tree in the last 10 years. We also went out after bedtime to look at the lights in the park and watched some football. I am so content and relaxed and ready to soak in the advent season as well as the festival of lights. Sitting back today reveling in it, knowing that it might be another 5 or 10 years before we get this again, so I will bask in the glow of a holiday gone well for as long as I can. To those of you in that special place in my heart, the ones with daughters younger than Claire, please have hope, there is life after Rett Syndrome, it is different, but it can be good, the potential is still there!
I have mentioned before that Thanksgiving brings with it some hard memories and it is no secret that tomorrow is the big day. Yesterday Claire had PT at CCS. She had a great session, she worked so hard on high kneel and her standing balance, the new AFO's are helping so much!!! For a long time we have really been working on walking, so she hasn't had much time on the floor at PT. Lately, our PT has been working on crawling as a strategy to help with the walking. I had heard about how well it was going, but I hadn't been around to see it and yesterday I was. It was so hard to watch. In the beginning Sue had to prompt both her hands and her legs, at the end she was doing the legs and Sue only had to help with the hands. I took me back to when she was Chloe's age. Claire was such a fast crawler, I would struggle to catch her after the bath before we could get her pjs on. Here she is working so hard at it, while I watched it felt like somebody was reaching inside and slowly ripping my heart out. Then Abbey got there. Abbey is Claire's friend that we met in Music Together 3 years ago. Abbey has CP. I remember looking at her mom and thinking how I couldn't imagine how hard that must be for her, Claire was so much easier to handle than Abbey. In 3 years time Abbey has been making steady progress and Rett has been playing it's cruel and nasty tricks on Claire. Even though she is doing very well, it was a reminder of just how far away we still are from when she was 12 months old. Then just as if she knew I needed some encouragement (maybe she can see the tears behind my sunglasses) that night she started to really use her hands more. First she got her hands tangled in my yarn, twice, she also knocked the washcloth off the table and reached to touch her computer screen. It allowed me to go to bed with a little hope instead of just a sad heavy heart. There was no school today and I was hoping that they might sleep in, that didn't happen. So we slowly got going and went out for coffee before we had to be home for ABA at 10. Our apartment is above our garage, so I have to carry each of the girls up a flight of stairs separately. I took Claire upstairs and set her on the couch, her talker was already there as she had been yakking away during Elmo just before we left. I went back down to get Chloe as Sara our ABA therapist arrived. She walked in and found Claire, sitting on the couch rocking out to Listomania (see pic above). Claire was so proud of herself, it was great! Sara then tried to "run the session" as she typically does. She asks Claire which activities she wants to do and they do them. Today was the exception, Claire was saying no to EVERYTHING! As I was listening to this shenanigans it occurred to me what might be going on. I had told Claire that we could watch Beauty and the Beast after Sara left. I then heard Claire's voice say "car parking lot thank you highway dvd player watch". The little diva was trying to politely excuse Sara a full 90 minutes early. It was so great! As the day continued it just got better. She sat on the couch to watch the movie and would call me over by saying, "I am not so well" I would go to check on her and she would then tell me "I'm fine goodbye" I felt like a human yo yo but just loved this game! Again, I find myself so deeply humbled. That I was convinced that Thanksgiving would be forever stained for me. Then we have days like this and I can dream of the day that again, Claire puts food in her mouth. I find myself being so thankful for all that I have, as broken and messy as it might be, I am truly blessed on levels that I am not even aware of. I wish you all a moment or two that you can take during this holiday, remind yourself that I am thankful for you, my friends and family on this journey, thank you!
I love gifts, I really love giving gifts. I think it might be because of how I grew up, my mom was really good at picking out gifts that made you feel like she really knew you. She always managed to pick things out that I had not even thought of, but were just what I needed. I am still working on honing this skill and it is hard when time is restricted by the two little girls that require much from me. This year I opted to do thankfulness gifts for all of Claire's entourage instead of something at the holidays. I chose to do this because I don't get why I would give people a gift for a religous holiday when I have no idea if the people that I am giving to celebrate the same holiday. I also want to make it clear why we are giving the gifts, because we are thankful for them, as opposed to some sort of guilt induced commercial hype that motivated me. So this was our week and it was great! We gave jars of raspberries in a light honey syrup that we had made during the summer break. Truly, the best part about giving is seeing the receivers eyes light up and a smile come across their face. I didn't get to see everyone as Claire distributed them around during school, but I am pretty confidenet that she really enjoyed seeing those faces herself. Now with all of the gift giving done, I am free to savor Thanksgiving and the advent season, and I am really excited about it.
As I sit and write I can't believe that in a week Thanksgiving Day will already be done and over. I have so enjoyed this fall so far. Yesterday I had a lot of driving to do but it was so beautiful the time just flew. It was gray out and it made the yellows and reds on the trees pop, truly spectacular. I have enjoyed different people posting about what they are thankful for and the anticipation of the Christmas season. Got me thinking about what I would say if somebody were to ask me what I am thankful for. Honestly, my mind and my heart really took off on this one and I am going to try to sort it out here. According to Wikipedia "Thanksgiving was a holiday to express thankfulness, gratitude, and appreciation to God, family and friends for which all have been blessed of material possessions and relationships." Maybe it is just me twisting things in my head, but the premise of this is that we are choosing to give thanks because God 'did' because we 'have'. As I prepare to cook the stuffing and the pies I have really been thankful not just to God, but for Him. I am thankful for my friends and family and all of the things that I have been blessed with. But I don't want to be thankful just because I have all of that. I am choosing to be thankful because I am grateful that God loves me. As dark as it sounds, just that He loves me doesn't mean that it will always be bountiful and easy, and I don't want to feel that I am only thankful because it is so good right now. Which brings me to the rant part of this post, how on Earth did we get to the place that we celebrate being thankful by waking up at 4am to go shopping for stuff we don't need?!?!?!? It would seem to me that thankful and content would go hand in hand, but alas, I am wrong. We want more and we want to pay less for it! I am so frustrated by my country's willing participation in this marketing frenzy that ends every year in people spending money that they don't have on stuff that they don't need. That doesn't sound very thankful to me. It also strikes me as odd that we would choose to celebrate being thankful just one day a year, that is all the time that we can take for that? I am really excited that this year our little family will be celebrating The Festival of Lights (Hanukkah). It seems to me that 8 days is a much more reasonable time to celebrate God and our thankfulness. We will still celebrate Christmas and the advent season as well, I don't think we should have to choose, so we are doing both! So there it is, I am very thankful for the many blessings that I have, yet without any of it I would still be sitting here in awe, that God would love me, as broken as I am.
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.
It has been a few months since Claire got her voice and I think it is fair to say that it pretty much has changed our life. I have had contact with a few different families who are looking into a communication device for their daughter so I thought I would blog about why PRC has been as amazing as it has been. At the root of it all is one phase that Claire says around people that are new to her "This is my talker, it helps me speak." Prentke Romich (PRC) was first recommended to me by somebody that I considered to be an adversary. Claire was 3 and had just started in the county autism preschool. The process of getting there had been comprised of one ridiculous evaluation after another, so I assumed that when the person came to do the assistive tech evaluation, she too would completely miss Claire. I told the lady that we were looking into MyTobi as there was an eye gaze controlled computer that was coming out that Claire could use as a communication device. While the lady didn't completely get Claire, it turns out that she is some sort of genius with a PhD that teaches about this stuff at the college level. She gave me her card and really encouraged me to look into PRC. At the time PRC didn't have a device that used eye gaze and I knew that it was all about access. A few short weeks after that PRC announced that they were releasing the EcoPoint to go with the Eco14. I still had no idea what this meant, everyone in the rett world (which is pretty much the whole universe from our perspective) was going with Dynavox and MyTobi. The Dynavox rep brought their eyegaze system and Claire was amused, but barely. Next in line was the MyTobi rep. Claire did great for the one hour that she had to play with it. There was a Christmas tree and she popped the ornaments. She also enjoyed an activity that had animals and the sounds that they made. Third up to bat was PRC, I still had no idea what the difference was between all of these, I was learning as we went. I was absolutely blown away by Claire's response to the Eco. It was language, not games and she loved it! I have never had a doubt in my mind that Claire has had a language problem, she just couldn't talk because Rett screwed up her body. The Eco was the perfect solution to it. It does just that, it helps her talk. PRC uses this really cool language system called Unity. I have to admit it was weird at first. The icon for "want" is that of a jailbird in black and white stripes looking at a wanted posted. It was much more abstract for me than it was for Claire. The coolest part about unity is how it is organized. It really capitalizes on motor planning. So once Claire gets the motor pattern for something, it is pretty easy for her to get to. It has given her access to so many weird things that I didn't expect her to say. Like calling her sister dumb or announcing that her dad was leaving late when the phone rang during dinner. Having access to language, to whatever she wants to say and not just pages about topics that I think she would enjoy has really helped her to grow into the 5 year old that she is today. She is really normal. Sure she gets mad as hell because she hates the limitations of her body sometimes. But for the most part, the talker has helped her to deal with that and say what upsets her. I want to really encourage anyone out there who is looking into a talker with or without eyegaze to look into PRC and their products. They have had nothing short of absolutely fabulous tech support as I have had my programming challenges and a few quirks. Lastly, from a parent perspective, this is super low maintenance. If the best option for her would have been high maintenance, we would have gone with it if. But it is so nice that because it is a language system, there is really very little programming. Sure we put pictures of our family in it and she has all of her music on a songs page. But she really uses it as her talker, sometimes a keyboard if we want to type something she can do that to. It is not a game, although it has go fish, uno and a bunch of other fun stuff on there. It is her voice, her access to spoken language and it has changed our life, to say we are grateful for it seems like and understatement, but that is the best I can come up with.
No surprise that so far, today is going better than yesterday. Yesterday there was no school, which immediately makes a day hard. Then we drove 45 minutes to see a doctor and Miss Amazing remembered the wrong time and doesn't seem to be able to read so we showed up at 10:30 for a 10am appointment, which I then rescheduled for the end of November. We then rushed back home to get to OT instead of doing any number of more fun things, to find out that the OT left a message at home, she was out sick, sigh. Not today, today is so much better so far! Today was Claire's first day in her new class. I think it is pretty safe to say that I was more nervous than she was. I know so much more about rejection and how mean people can be than she does. I remember being laughed at in 1st grade. The thought of her having to endure such pain, on top of already having to deal with a lot just makes my heart sink with weight. But this morning we had our act together. We were in the car and rolling even a few minutes early after enjoying an easy going breakfast as a family. Just to clarify, breakfast as a family consists of the girls eating oatmeal that Jared and I feed them, Jared also drinks coffee. It just didn't involve vomiting or screaming or a tantrum of any sort, which was nice. Even the walk down to the car was nice this morning. It was 40 degrees which is my idea of a perfect morning temp. Cold enough for the air to have that crisp clean feel, but not so cold that you can't breathe it in. The fog was in pockets throughout the redwoods and burned off as we got closer to town. We pulled in and there was a blue spot open for us (I was a little worried about that) which was nice. Another blue placard holder, sneered at me as I got out, clearly, it was her spot. We were early, really early. But Claire really wanted to go, so we loaded up and went to sit outside the class. She obviously hasn't learned the trick of sneaking in just as the bell rings so as to draw very little attention to oneself. She rolls up and immediately three little girls come to say hi. Not in a hi sweet little baby sort of a way, more like a hi Claire what's up sort of a way, it was great! She's the popular kid. Seriously, how did I end up with the popular little girl that wants to be covered in pink glitter, loves art, horses and dogs, how can this be?!?!?!?! But I did, and she is great. I have to say how laid back the parents in that crowd are. They look way more rested than the parents at the autism school drop off. It was really nice to be part of that parent crowd. There was a very easy going feeling about it. I am really excited for Claire to get more time with the typical, more laid back kids too. I imagine that as she hears them speak and act, that she will have the affirmation of being around people who are just like her.
Today was supposed to be the first day that Claire got to go to her inclusion class for an hour to start the day. Unfortunately, her aide that was trained for it couldn't be there today so we postponed the start until Tuesday next week. Side note, this works out well because Captain Awesome and Miss Amazing completely forgot to set an alarm and woke up an hour late today. When we decided to postpone yesterday, we completely forgot to tell the new teacher, Mrs. J, oops! So this morning I get an email from her, asking where Claire was, understandable. She also added that she wanted to be notified so that she can not make extra copies for Claire on days she will miss, today it was one piece of paper. I have to admit I was a little irritated by this. I have a sort of full plate, sometimes I miss things, I am after all human. So I responded and explained what had happened and offered to stop by after school to pick up the missed activity. Claire was very excited to show me her new classroom, she is over the top excited about kindergarten! The teacher gave me the activity and explained it. I verified that really, really, Claire is planning to come to class on Tuesday. It was then that the teacher politely reminded me that Claire should arrive at 5 minutes before 8 and that she is very strict about students coming late as it is very disruptive. I have to admit, at first I was a little mad. I have to drive 15 minutes to get to school and traffic is randomly very heavy, adding an extra 10 minutes. Claire has to have her meds in the am, stretch, walk, eat and get dressed before leaving for school. It is a miracle we make it on time as often as we do, on average about once a week. I really felt like this teacher had no appreciation for all the stuff that I have to do for this little girl, just to keep her alive and sorta well. Then it dawned on me, Mrs. J is no different than I was 4 years ago, back when I had a healthy 1 year old little girl and no idea about people with disabilities. My next thought was one of those huge, mind bending thoughts, that really made my brain stretch. She is treating Claire like all of the other kids, isn't that what I want? With that, both my brain and my heart exploded. This is real inclusion. The teacher is putting the same expectations on Claire and her mom as she is the other students, what an honor. I guess I figured that I would always have to fight for Claire, that people suck and don't get it and that life would be an uphill battle. I am so deeply humbled as I stand corrected. As I have been soaking in this idea of respecting other people enough to assume that they are not being disrespectful or malicious, I was hit again. Mrs. J replied to an email that I had sent. I had written a letter to go to the new classmates and sent it for approval. Her response was that it brought her to tears and that she would send it home with the students. She also invited Claire along on a field trip that is being planned for December. The class is going to the children's discovery museum. There is a visiting exhibit called accessAbility. She wrote "The concept is that kids can get an experience of what it is like to live with a physical difference and explore the similarities and differences in the ways we each participate in the world in." All I can think to say is wow, I am truly blessed. Claire is surrounded by a lot of really beautiful people. Looks like with my whine and cheese, I'll be having a big helping of humble pie too!
Don't get me wrong, October was a lot of fun. It was just a lot! My poor little brain is still pretty sore from just how much was in October. It was mostly highs, with a few lows, it was just a lot. I am so glad that November has come, Thanksgiving has always been my favorite holiday and I find the transition at the end of fall to be remarkable. The last three Thanksgivings have been the exception. The last meal that Claire fed herself was Thanksgiving 2007. Ever since then, I have had a hard time even thinking about it. But Claire is doing so well right now, after the huge success of the birthday and our first year of trick or treating, I am thinking that we are on a role. It also helps that Chloe is coming into her own, for lack of a better way to say it. She has given good balance to our family. Chloe has also taken me to new levels of exhaustion as I struggle to balance making everything super accessible for Claire and out of reach for Chloe (certainly a battle I will forever loose). As the wind dies down and I attempt to savor the season and all of the wonderful that my life is, it is hard. I don't mean that it is hard to savor, I mean that life is hard. I am wrestling with the concept of living in a storm forever. Of coarse there are good days and bad days. But the good days aren't easy, we just smile and laugh more. So the question swirls in my head, how do I live in a storm. I have heard "Life's not about waiting for the storm to pass, it's about learning to dance in the rain." and I hate that phrase. It is cute and if it gives relief in a hard moment then great, honestly I love rain, the thought of dancing in rain makes me very happy. But storms are hard. Feeding Claire for at least 90 minutes a day is hard. Balancing everything that it takes to keep Rett Syndrome from eating her alive is hard. Trying to be something more than a caregiver is hard. I think I am getting to a good place where hard isn't bad, it is just hard. My hope is that I can take that, and enjoy the beauty of my storm. Much like the monsoons that I grew up with. There was awe inspiring lightening that would fill the sky. Water would blow so hard it would go under the doors, trees would blow over, cactus would be uprooted. It was such a demonstration of beauty and power. It was great to take in, but putting the yard back together was sure a chore. Replacing roof tiles, getting the furniture out of the pool and so on. I see the next few months as a bit of a monsoon for us. It comes around the same time every year, is fairly predictable, there is always wind and lightening and a terrible mess. That is what my life feels like on Rett Syndrome, a monsoon. However, I have learned that if it starts to hail, I will not put on my swim suit and go dance in it. Yes, when you live in Arizona weather really is that exciting, and I was young, but I learned my lesson.