Silent Angel...Not So Much!

I am sure that most of my rett friend readers have heard the term "silent angel" in reference to the girls that have been diagnosed with Rett syndrome. I imagine the term references that the girls don't use words spoken with their mouths to communicate. However, Claire is far from silent. First of all she has a voice through her computer and secondly, there is nothing quiet about Claire. Weather it is her laughing or screaming or maybe grinding her teeth, certainly none of these things make me think of silent. On Friday Claire's computer had an error that required me to call tech support. Of coarse Miss Amazing remembered roughly 30 seconds after they switched their phones off for the weekend, drat! With that as the stage, Friday afternoon and evening were pretty painful. Claire wanted to talk and she made it abundantly clear she was not happy. It was an emotional 5 year old, why are you doing this to me cry/scream that slowly ripped my heart out as it went on. We were aggressive on keeping the fun levels up over the weekend and that helped take the edge off her missing voice. Monday passed, it was long, but aren't they all? Again, I didn't call tech support in time but at least Claire's allergies were bad so between a long nap and being out of it at dinner she hardly noticed. Tuesday was my day! I got on the phone and the great tech support at PRC walked me through resetting it to factory settings, problem solved! Too bad I hadn't backed up the device since September, drat! Oh well, what's done was done, I was having a good day and wasn't going to let that set me back. I even took the time to help Claire walk to the dinner table and she did so well! Too bad Chloe tipped too far back in her chair and went crashing down with a loud thud to her head. Buckle Claire, attend to Chloe, situation back under control and tada, Claire's talker is working! Right away Claire started saying all sorts of things. Typically when she says something, she pauses and looks for a response from her audience. But she wasn't looking away at all, it was a run on, she looked stuck. I gently turned her cheek toward me and told her that it was alright to take a break from her talker, that she could just look at me and we could chat. Immediately tears welled up, her glasses steamed up and the whaling began. Chloe looked at me and said, "Claire's mad Claire's sad" what a perceptive little girl. It was an hour of the high pitched mad as hell business. She never ate her dinner and got into her pj's screaming. There is no doubt in my mind that she is a sweet little girl and that my life is better with her. She is strong, smart, funny, caring, loving and so many wonderful things. Silent, not so much.

Enough?

How much is enough? How many hours of PT and OT? How much respit? How much equipment? When we got the diagnosis this in one of the things that was right in the front of my mind. I wanted to go as long as we could before having to advocate and fight. At that time, the idea of a severely disabled child seemed so far off, and in some ways it still feels that way, in others it doesn't. Claire is doing very well right now. By very well I mean that she wakes up alive in the morning and is present throughout the day. Sure there is a lot of screaming and crying and she isn't doing any brand new things that are mind blowing (like standing up and walking away) but she is doing small things that I had forgotten to hope for. With that said, it doesn't seem all that broken. But then we talk to other families, learn what is working for them and a mean little voice creeps into my head, maybe we should be doing that too? Why is it that being content with this is so hard?!?!?!? It is certainly guilt and fear driven, what if there is something that I could have done more of that would have made a difference? Well, I guess we will just never know. I am mentally psyching myself up, today we go over the hill and through the city to Children's Hospital Oakland, to Katie's Clinic for Rett Syndrome. I had hoped to not go this year, but with the creepy seizure or neurological craziness that is going on, I called and they were able to get us in. These people are the experts, they see lots of girls and know all the stuff to recommend. They know what kind of equipment might help, what type of therapy to do and other stuff that I wouldn't know. We normally get a report a few weeks later with a short list of things to do. But honestly, I don't want a list, I would like to be done please. I would like to hear that I have done all that is humanly possible and that I can just enjoy Claire the way she is and not worry about the future. Is that too much to ask? I know that won't happen, at the minimum I see a long EEG in our future, maybe some seizure medication. Perhaps somethings for scoliosis and advice on getting BMI up. So here goes, off I go to walk that fine line, advocating and getting what Claire needs, but not getting greedy and trying to get things for her just because we can, enjoying her for all the joy that she is while grieving that we are going to a hospital because her body doesn't work right, and of coarse getting some ice cream along the way.

This much I know, it wasn't boring

I just looked at the calendar and noticed that on Saturday, it will be a whole new year, wow, that was fast! I have to say that all in all, I think it was a good year for us. It wasn't easy and certainly wasn't boring. It started off a little rough. I was in a terrible amount of pain from injuries I had gotten in an accident the previous March. After having a really great trial with the Eco we had to send it back and again, Claire had no voice, which she found very frustrating. Chloe was just starting to really do all of the things that Claire had once mastered and then lost which felt a lot like having my heart constantly ripped out and stomped on. However it was through that craziness that I got back to a place where I started to feel again and I can not say how wonderful that has been. I think I had been pretty close to a zombie, trapped on a hamster wheel of survival for a solid 2 maybe 3 years and this was the year that I got off. February was really the month that changed the pace. First I had surgery on my wrist which really helped once I recovered. Since I wasn't much use with one hand I got to sit and have my tattoo finished, which was such a good way to really feel, I am still surprised at just how therapeutic that process was. Then we had Erika's Dream which was a lot of fun. There is something so rejuvenating about being around our Rett family, they just give life. Then Make A Wish sent Claire and our family down to Disneyland to meet Ariel. That was a game changer, really, Make A Wish is awesome. The way that trip encouraged and inspired Claire was transformational, it gave her the confidence that she carries today. I think it was around the end of March that the Eco came, that was also a huge part of this year. I can't imagine life without her voice, even when it is annoying and she says the same thing 30 million times in a row, I love it! I would have never imagined that Claire would be teaching her sister how to say silly things, but with the Eco that has happened. Chloe has grown by leaps and bounds by the minute the whole year through. She is such a sweet and caring little girl. I have loved getting to know her spirit and seeing what is possible when all the DNA gets in the right order, it is amazing! Before Chloe I honestly didn't get why people would want to have so many kids (more than 2) but now I can say that it makes a lot more sense. No, that is in no way an announcement, we are very content with 2 little girls, if I were to guess, the next thing we add to the family would be a male service dog. Back to the story, this summer I had my first and most likely last trip to Las Vegas. I got to spend time with some of the greatest moms that grace this planet today and with no kids! Erica dubbed it the rettaway and I am hoping that something of that nature lines up again for 2011 because it was epic. I think that one of the defining things of the last year has been the deep friendships that I have made within the rett world. Even though many of them are not really close, just knowing that there are others out there has given me great peace and I love you guys so much! If there were a metaphor for this last year I would compare it to a scab. The injury wasn't super fresh, but it hurt. As it heeled and peeled off it was a different kind of fresh hurt, but I could start to use it more. After this year of having the scab picked off and regrow and eventually heal, there is still a little scar tissue, but I am functional. I am excited for 2011. If there is anything that the last year taught me it was that I don't dream big enough. So with that, I suppose that I can't even start to think about the fun and exciting things that will take place in the next year, but I know that it is out there, and I am ready for it! I am hoping that among the fun stuff for next year is a trip to Boston in May and since I am working on the whole dreaming big thing, I am going to through out that I hope they announce the cure while I am there, that would be really, really cool! Final thought, I have decided that Sigh No More by Mumford & Sons was my theme song to 2010, so here are the lyrics for you.

Serve God love me and mend
This is not the end
Lived unbruised we are friends
And I'm sorry
I'm sorry

Sigh no more, no more
One foot in sea, one on shore
My heart was never pure
And you know me
And you know me

And man is a giddy thing
Oh man is a giddy thing
Oh man is a giddy thing
Oh man is a giddy thing

Love it will not betray you, dismay or enslave you,
It will set you free
Be more like the man you were made to be.
There is a design,
An alignment to cry,
Of my heart to see,
The beauty of love as it was made to be (x4)

Field Trip!

Since Claire has started kindergarten, she has 35% of her day in inclusion with a mainstream kindergarten class. Last week they went to the children's discovery museum and Claire got to go along for the whole day! I knew that I had to go guarded but that I would have to go. I drove Claire, her aide and another little girl from the class. Lucky for us, there was an accident so the 40 minute trip took an extra hour and used up all of our boredom margin in the process. Once we got there is was a little rough at first. The first exhibit I saw the kids playing in was the access/ABILITY. This was the exhibit that the teacher was so excited about for her peers to see. See it they did, one girl played in a pediatric wheel chair and wheeled her self around. How horrible is it that I watched this all I could think is, that is hardly disabled, sure they can't walk, but that's it. Show me a blind person with CP, that is disabled. I don't really think mean things about people who are confined to wheelchairs. really, I have friends with that singular handicap and it by no way shape or form easy. It just seems like what we have is so hard! So hard that an exhibit would never even think about ABILITY on our level, what it takes to get Claire to participate in life. So with that I sat hiding in a corner after a short time I could hear Claire as she was clearly not happy and her aide didn't have a clue. I stayed back and really tried to let Lupe, the aide, do her thing, but she didn't so I stepped in. I have to remind myself that Claire is in an autism classroom and the aides are trained to work with that population, it is easy to forget that Claire works very differently because similar behaviors present. So Lupe was trying to calm her sensory system when I stepped in. I asked a few questions and figured out that Claire was lonely. Lupe had been playing one on one with Claire, while Claire wanted Lupe's help to play with her friends, a very different thing. Once we figured that out, Claire did a little of her heart wrenching sad crying and calmed down. I can't imagine what it would be like to be 5 and want to play with your friends and just not have the ability to get the grown ups around to help, so I really think the screaming was fully warranted. I took them to find the classroom teacher Mrs. J who would know who Claire's friends were. She pointed them in the right direction and Claire was happy as a clam. The teacher also took the time to ask me questions about placement and weather or not Claire was in the most appropriate class. I know she was well intended but it pretty much came across like, "I don't think this is good for her." Sigh. I know it is hard, but sadly, it id the best option and it took me about 15 minutes to explain this to the teacher, not sure that she ever got it. Claire went on to make a corn husk doll and play in the clay room where she again got a little upset, only because she was starving and a little snack fixed that quickly. By that time I had also showed Lupe how to use the yes/no cards, that helped a ton! We finished up with face painting, where one of Claire's friends, the little girl in the car with us, painted Claire like a tiger. Claire loved being a tiger, loved! We sat and enjoyed lunch on a park bench with her peers and left happy. I am so glad that Claire gets over things faster than I do, her perseverance continues to amaze me. In the end, we did it! We went to the museum and we left with smiles on our faces, I do think that it will be a long time before we go back though.



On a side note, I want to share this very exciting research. It pretty much says that what we are doing really works. Putting Claire in a rich environment really is critical to her brain development, so we will most likely continue to torture ourselves with fun stuff like this until we get the medicine in the trial, in which case hopefully we will be able to do the same fun stuff, it will just be less torture because her brain will fire better.

Clinical Trial For Rett Syndrome Launched

Study marks the emergence of disease-modifying treatments for autism spectrum disorders

BOSTON, Dec. 16, 2010 /PRNewswire-USNewswire/ -- Researchers at Children's Hospital Boston have begun a randomized, placebo-controlled trial to test a potential drug treatment for Rett syndrome, the leading known genetic cause of autism in girls. The drug, mecasermin, a synthetic form of insulin-like growth factor-1 (IGF-1), is already FDA-approved for children with short stature due to IGF-1 deficiency.

The trial, now enrolling patients, marks the beginning of a trend toward drug treatments seeking to modify the underlying causes of autism spectrum disorders, rather than just behavioral symptoms such as anxiety or aggression. It follows research in animal models, published in 2009(1), which suggested that raising IGF-1 levels can reverse features of Rett syndrome by enhancing maturation of synapses —the points of communication between brain cells.

"We expect that therapy that stimulates synaptic maturation will serve as a model for pharmacological treatment of not only Rett syndrome, but of other autism spectrum disorders," says Omar Khwaja, MD, PhD, the study's principal investigator and director of the Rett Syndrome Program in the Department of Neurology at Children's.

Rett syndrome, occurring almost exclusively in girls, is an X-linked neurodevelopmental disorder causing severe cognitive, motor and language problems and autistic behaviors. Other features include loss of purposeful use of the hands; repetitive, stereotyped hand movements; slowed brain and head growth; and heart-rhythm and breathing problems. Although affected children appear normal during their first six months of life, symptoms emerge, tragically, between 6 and 18 months of age, a prime period of synaptic development.

The three-year pilot study will randomize 40 girls (aged 2 to 12) with Rett syndrome to receive the drug, known as Increlex® (Tercica Inc., a Subsidiary of the IPSEN Group) for five months. The study will use a cross-over design, allowing girls assigned to placebo to switch to active treatment after a six-week "washout" period. The main outcome measures will be improvement in neurodevelopment and in cardiorespiratory function.

Although Rett syndrome used to be seen as a degenerative, irreversible disease, recent research indicates that brain cells aren't actually lost, and the brain is structurally normal – instead, the synapses between cells are weak, preventing brain circuits from maturing. Rett syndrome's usual cause is mutation or deletion of a gene called MeCP2, which itself controls a group of genes that regulate synaptic changes in response to input from the environment. In 2007, working with a mouse model of Rett syndrome, researchers used genetic tricks to restore MeCP2's function in the brain.(2) The mice showed a striking recovery, suggesting that Rett syndrome, even when well established, might be a treatable disease – if only synapses could be built back up.

"This was an enormous intellectual proof-of-principle that we aren't wasting time thinking of therapies for girls who are already symptomatic," says Khwaja. "Before, it was thought that if there ever was a treatment, it would have to be given before symptoms appeared, and that once the disease started it couldn't be reversed."

IGF-1, the drug used in the trial, is indirectly regulated by MeCP2. It has been shown to enhance synapse maturation, and in mice missing the MeCP2 gene, treatment with IGF-1 ameliorated several features of their Rett-like disease.(1)

"There's been a big sea change in how Rett syndrome and other neurodevelopmental disorders are viewed," Khwaja says. "The synapses are very dynamic. They need to be stabilized, and if they don't receive the right stimulus, they'll naturally disappear. That change in paradigm has really affected the way that we look at treatments, and I think it brings a lot more hope."

The new view has already affected the way schooling and education of children with Rett syndrome are being approached. "There's more and more evidence in animals that enrichment and schooling can help synapses form and strengthen," says Khwaja. "The battle is getting the girls into appropriate educational settings. If you are repetitive, and give them ways to communicate, they actually can learn, and that's probably because you're reinforcing these synaptic connections."

The clinical trial is funded by the International Rett Syndrome Foundation, Autism Speaks and Harvard University's Catalyst Pilot Awards for Clinical Translational Research. For information on enrollment, contact Katherine Barnes (katherine.barnes@childrens.harvard.edu; 617-355-5230) or visit www.childrenshospital.org/rett.

LPCH, where everyone's the same

Yesterday was a pretty routine day for us, with the exception of a little trip over the hill to LPCH for Claire to see the eye doctor. Jared decided to take the day off so that I would be spared from taking Chloe along to Claire's appointment. After dropping Claire off at school we started the day slowly with coffee and a walk down to pleasure point, to say that it was epic is indeed an understatement. As we walked and enjoyed the sound of the waves gently crashing we did the download on all that the day contained. I really wasn't that worried about the trip to the doctor. It was a routine appointment and the worst that would come of it would be glasses. Funny how even on a good day, with the sunshine on my face and my husband by my side to help, deep down in there was a little bit of fear. We have so many memories from LPCH. Most of them involve needles and Claire or some sort of doctor telling us how worried they were. As much as I tried to believe that today would be different, a little voice inside me quietly whispered, she still has Rett syndrome. With that I was able to soak in the beauty of our morning walk and knock off a few things on the to do list before it was time to get Claire and start on the day's journey. We didn't have much traffic and we actually got there on time, which in itself is a small miracle. After checking in it was time to do what everyone else in the busy waiting room was doing, wait. It is an interesting area due to the variety of doctors serviced by that area. The lab is there, so you can hear young kids screaming as the friendly vampires do their best to stick them with needles and suck their blood in the gentlest of ways. There were a few people in wheel chairs and lots of people with glasses as the clinics that were open today were the orthopedist and the optometrist. A sweet and healthy little boy that was standing in front of us turned to look at Claire and said with so much care in his tone, "Did you break both of your legs?" She smiled and I told them that they weren't broken and he smiled and walked away. One dad that was patiently waiting struck up a conversation with me, he was there with two of his kids. They are both in different stages of the scoliosis surgery process, his eldest child also has scoliosis but hasn't had the surgery, yet. Got me thinking, they looked like such a normal family, kids dressed in varsity gear from the local upitty Palo Alto high school, but none the less, they were sitting in the same waiting room that we were. There were also families that looked to be of far more humble means. As I said to the father that I was not in line and that he could go, his son translated for him. There were people from so many different backgrounds there, so many different medical challenges. Reminded me of how we are all the same, so vulnerable, so helpless when it comes to our children. Finally we were called back and Claire was her 85% of the time wonderful little self and did everything that the doctor required of her. When we got around to seeing THE doctor she was so excited to see Claire. She remembered us from 3 years ago (memorable in a good way I hope) and that she was so glad to see that Claire was doing so well. That is code for "we expected her regression to be much worse and for Rett to have taken a lot more" but at least she chose to put it politely. I am also very glad that Claire isn't doing worse as they all had expected. So we took our script for glasses, packed up all of our gear and piled into the Smart car. We paused under the big tree before driving home to marvel at the leaves, to put it all back into perspective, that we all have a lot, that God is bigger than us and that He loves us enough to make really great children's hospitals that everyone can afford and then we drove home.

Mission Accomplished, well sort of

We did it, Claire had fun at her first birthday party with her peers. It was a little awkward to walk in as I had no idea what the birthday girl looked like or who her parents were. Claire goes off to class with Donna in the mornings so I haven't really met many of her friends yet. It was pretty crazy when we got there, kids running around like crazy, balloons all over the ceiling and Claire got overwhelmed pretty fast. Good thing I thought ahead and invited the amazing Sara to join us, she is our ABA trainer and is so good at helping Claire to calm down. We went for a walk and Claire came around pretty quickly. She is so brave, she went back into the party with a big smile on her face. We opted to watch from the window of the dance studio. It was pretty fun to watch the other kids dance, they had no idea how to break dance, but they sure tried! I always love seeing her bright smiling face after we do things like this with the rest of the world, but it always makes me sad, really really sad. I hate that the world doesn't know what to do with anyone who is different. One of the girls who is a friend to Claire asked why she wasn't feeding herself the cake with her own hands. On one hand it is sweet that she thinks that Claire should be able to do it, on the other hand it is so screwed up that she can't. I hate this game of having to walk on the edge, trying to keep one foot in the world of the typical people, where I know Claire loves to be and the other foot rooted safely in rettworld. I keep telling myself that this will get easier with time, and while I do believe that it true, I know that it won't get to the place where it will be easy. I guess I get the privilege of grieving for the rest of my life or so I hear. No time for that today though, we get to go to Jared's company Christmas party tonight. Two parties with the normal world in one day, I think I will be done for a while after this :-)


Here is a little clip of the kids dancing, you can't really see us sitting in the mirror, but Claire had a huge smile on her face, promise.

Down and Up and All Around

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!

Thankfulness Gifts 2010

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.

PRC and how it changed our life

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.

That Went Well

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.

The Beautiful People

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!

October 24th

For the last 4 years I have hated October 24th. 2006 I was traveling home very ill after doing the Nike 1/2 marathon for my mom, who I thought was dying (Oct. 24 is also her b-day). 2007 we had just gotten the diagnosis. 2008 we were just starting school and in iep hell and a huge legal battle 2009 Chloe had started to shove in my face just how not typical her sister was. Aside from the 1st birthday, which I was required by grandparents to, I haven't done a real cake for Claire. It has been a friend or a small dinner party, but nothing really for Claire. 2010 was our year and I am hoping that this is just the start of the birthday celebration that just gets better every year! It was more of a long birthday weekend than a "day". It started after horse therapy on Friday. Our ABA conveniently canceled so we got to go to lunch with my parents who had just flown in and my cousin who was in town for hockey. We ate at The Counter and Claire got a milk shake and french fries (can you tell we are trying to fatten her up?) this was huge considering she typically gets organic whole grain pasta with grass fed ground beef, kale, eggplant, peppers and tomatoes. Saturday morning we did our usual trip to Verve for coffee, but Claire got a special treat, a whole cup of whipped cream sprinkled with chocolate shaving. Then we were off to the mall for shopping with Nana and ear piercing! A few weeks ago Claire announced "My birthday is October 24th presents earrings" how could I not give positive reinforcement to such wonderful and clear communication! We had a lot of fun shopping, she is very good at picking out clothes. Later Saturday we chose to open presents and then watch a movie before bed. Sunday was the actual birthday. We slept in a bit, played wii bowling and went out to breakfast all bundled up for the rain. I don't know why I am so consistently shocked, but Claire does so well eating out. She had a quesadilla with peppers, onions, mushrooms and some other stuff that looked really good, and she ate it up fast! A little later we did "the cake" which was a pretty big deal. Not only did she get a real cake, we hooked up a switch to the fan so that she could blow out the candles. So we ended up singing close to 5 times, just so she could keep blowing the candles out, it was such fun! For the final birthday feet, Claire took in a tray of gluten free cupcakes dripping in purple and yellow sugar crystals, the closest thing to glitter that I could find. Her class had a huge party for her and even gave her a present of a little toy cat to hold on her lap (it is super creepy but she loves it!) and some hair clips. All in all, I think that 2010 will go down in the books as a huge success!

Too Marvelous!

October is Rett Syndrome awareness month and I have a team for the strollathon, so I put together this little video to help promote my fundraising page. It certainly wasn't an easy process. Going through old pictures, remembering all of the things that Claire used to be able to do. How she would feed herself, hold her cup and push her little wagon around. It got me thinking about everything that Rett Syndrome means for me and our family. Sure, it is a pain because we have to do so much lifting and it takes forever for her to chew, meals feel like an eternity. Then I look at her, I love how she reminds that nothing has changed. Sure she can't talk or use her hands, but nothing has changed. Claire is who she is and today, other than allergies, she is doing very well, and I am so in love with her!

Kindergarten!

September 1st was not only the first day back to school for us, it was the first day of Kindergarten! How ever did that happen? It was also that first day that Claire rode the bus home. I am so proud of my brave little girl, she loves riding the bus and is really enjoying her independence. I am really enjoying two less trips all of the way down to school. Claire has therapy the three other days, so for now, it is just twice a week home. Once we get the classroom situation settled in, I think she just might even ride the bus to school, so exciting! The classroom situation, there always has to be struggle to make a story good, right? At the start of the year, Claire was slated to be in the same preschool/kindergarten class that she was in last year. The problem with that is there were a bunch of rookies that got moved up into the class and it was chaos in there. Claire really does pretty well in chaos, but this was a little much. So I asked to see the k-3 class. I was able to see it that Friday and the same day get confirmation that she could switch! I seriously don't think we have ever had anything happen that easy. Wait a minute, maybe that was too easy, it got more complicated. We were told that today would be her first day in the new class, but it didn't quite happen like that. You forget just how unique your kid is when there needs to be a complete state of the union before moving to the classroom on the other side of the parking lot. I am actually really happy that both the old and new team are taking the time to be sure that no details get missed, Claire is really surrounded by a lot of amazing people. So hopefully next week she will be in the K-3 class as her new home, then we will start integrating her into her mainstream class. Eventually we will get all settled in and it will be Christmas break, oh well!

Searching for Simple

Funny how as life goes on and I have more experience under my belt, my perspective keeps changing. I recently found a blog of a friend from Guatemala. When I was in high school I went with a group down to Antigua for a few weeks. Although that was 14 years ago, still, the memories continue to form me. I was in a group that went to play with the babies that were under weight and waiting for surgery. Short version is that the babies were really tiny because they had clef palette and couldn't have surgery to fix it until they were at least 12 pounds. There were so many babies, the nurses had time to go in circles and change diapers and feed the babies, but that was about it. It was explained to us that the babies would gain weight faster if they were played with. We would sing songs and roll balls, it really wasn't that hard, it was actually a lot of fun. I can honestly say I have such a deeper appreciation for what we did now than I did then. At the time, it didn't seem that important. In fact, the children were so perfect. Their spirits were free and they loved to laugh. Yes, they were all awaiting surgery, but they seemed so content. As a whole, the people in Guatemala seemed very peaceful and content. Sure they lived in houses made of mud with dirt floors, but they were so happy. I actually came back from that trip with a heart that was more broken for America than Guatemala. Sure we can flush our toilet paper and stop and get a can of soda just about anywhere, but on a whole, they are light years ahead of us, at least the area that I was in. On Sunday people would pack into very crowded rooms and stand for hours singing and rejoicing in the name of the Lord. Here we have tons of half full churches that cater to different groups, seems really sad. As I look at the pictures that Judy has put up of the school that she works at, it has stirred such emotion in me. I really struggle a lot with the mentality of advocating for stuff for Claire just because she is entitled to it, it is a very easy pit to fall into. We all compare notes, how much ABA therapy are you getting, who is mainstreamed with a 1:1 aide and how do you get all the equipment for the house. Seeing the pictures of a boy who waited years for a power chair were such a beautiful reminder of the great life that is here and available to Claire every day, regardless of "services". Sure I am going to fight the insurance company and the school, to make sure that Claire's needs are met and that she has access to education. But I will not let it consume me. There is so much perfect life inside her that I need to remember to take advantage of every day.

This is huge!!!

It will be three years in October since we have officially been in the Rett family. I remember the permanence of the diagnosis really hitting hard. Up until that moment, I really thought that she was going to catch up, she was slow, but not disabled for life slow. I was telling a close friend about the news and somehow the topic of travel came up. At that moment, it really felt like I was never going to be able to go anywhere without Claire and honestly it wasn't much fun to go places with her. I was the only person on the planet who could read her. At the time Jared could handle her for a an hour at home and we had a babysitter who could sit here while she slept, but that was it. I felt like my dreams of traveling to Europe to see art that I had studied would certainly never come true now. Really it didn't seem to matter that much, when you think that your kid is going to die, giving up a life of travel isn't a big deal. I am just starting to realize that the day that we got the diagnosis was really the death of a lot of dreams, dreams I didn't even know I had. It has been a very long 34 months and it has flown by. Claire has taught me so many things, there is so much that I didn't know I needed to learn, a true eye opening experience. Fast forward to today, not only am I not the only person on the planet who can keep her alive, she is loved by so many and thrives when I am not around. As I sit and type this I am so giddy and excited for the upcoming weekend. In 60 hours I will be in another state, not because I need to see a surgeon or because my mom is ill. I am going to Vegas because I can! I will be joining up with 9 of the most amazing moms that the planet has ever seen. It will be epic, there is no doubt about it. For me, even bigger than all the fun and community I will get to have, it's a dream. If I can leave Jared home alone for two night with both girls, that pretty much opens the door back up to anything that I can think up. Who knows, maybe in 15 years I will be blogging about the stress of packing for our trip to Italy and wondering what to put on Claire's ipod for the flight.

Of All the Things I Dream of Claire Saying, This Wasn't It

I guess that I should have known this day was coming. In the past as Claire has sobbed after seething in anger, we have talked about how having Rett Syndrome isn't fair. Today Claire has been saying "long" and "hard" over and over. It has been a sort of riddle that we have been trying to solve, what's long, your hair, the holiday weekend. What is hard, uncooked carrots, your sister's head. We weren't getting a positive response on any of our guesses. Tonight at dinner we had a departure from the typical joking and silliness that Claire leads with her talker. It started with "long" "hard" then she added "live" and the light bulb went off in my head. Before I could say anything I else she said "bad". I asked her if she was talking about having Rett Syndrome and she looked me in the eye and smiled her sweet smile. Yesterday we went to see neurology. I talked with the neuro about how we want to be aggressive in working with Claire because I believe that there will be a cure in 5 years. At that point Claire smiled and I casually commented to Claire about how maybe when it is time for her 10th birthday (she had been talking about her b-day with the doc) she won't have to be bothered by Rett Syndrome any more. It has just killed me that since I told her that she has been telling me that she thinks that is a long time. As we talked about this her computer started to freak out and we had to reboot. Once it was back up I asked her some sort of question about being alright and she responded "do" which I took as a yes of sorts. Then she said "they will" to which I replied that they will find a cure. She then went on to tell me she was thirsty and that that I am slow and lazy like normal. It just kills me that all day she only said these two words as she was desperately trying to get what was on her heart across to me. On the other hand I am so grateful that we have this computer and that she had the release of saying that she thinks it is "bad" that she will have to wait so "long" and that it is "hard". If I could only describe the look on her face when I explained how lucky she is to know that a cure is coming and that a long time ago (3 years, even less) girls didn't know that there were doctors working on making a cure, but it was one of genuine concern for those girls. Yet again, Claire has used the perfect word to describe something that I so struggle to grasp "hard".

I Love Lab Rats

I remember that when I was young, kids would have pets like hamsters and gerbiles. I must admit I never got it, I didn't see them as cute and still haven't the foggiest as to why you would want them for a pet. In junior high I kept the class snake for a summer and got to feed it live rats, which honestly never bothered me, in fact it was a very interesting process. It has been a long time since I have even thought of such little things. Then in 2007 the world as I knew it blew up when Claire started to regress and was diagnosed with Rett Syndrome(RTT). As I scoured the internet, I found that there was a study that was just finished. Doctors were able to reverse RTT in mice. That was three years ago. Since then Claire has lost the ability to feed herself, hold a cup, to crawl and is unsteady while sitting and often just falls over without warning. Yesterday I had the honor of having one of the clinical doctors that works with Rett research and many of our girls in our home. She was telling me about how the day before that she was in the mouse lab at Georgetown where amazing things are happening. They gave the mice RTT and then an enriched environment and levels of BDNF went up. It is that simple, girls with RTT need more BDNF in their brains and you can get it by working with them. Here is the really super-dee-duper cool part about that. Researchers are working on a cure and it looks like we are about 5 years away. I have to keep pushing and fighting for Claire to get everything that she can in the way of access to therapy and life so that in a few years, when other mouse models all come together and there is a cure, we are ready to get up and dance and Claire will know that we believed in her. In the mean time you have a few different options of how you can help. 1. You send me a check for hydrotherapy so I can work with her in water and hippotherapy so that she can work with a horse to help her body move. 2. You sign on to facebook and vote once for the Chase Community Giving campaign for Girl Power 2 Cure by July 12th. 3. You can vote once every day the whole month of July in the Pepsi Good Idea campaign for Turn Research into Reality. Wow, look at that, I even have link right there on the side of this page. You can click on them and it will take you right to what you need to do. Honestly, I don't expect that anybody would send money because pretty much everyone I know barely has enough for their own needs, and I am alright with that. But really, who doesn't have an extra minute to vote online. I promise that even if you have to wait because the serve is slow or there is some type of technical error, it is way easier than using a computer with eye gaze to talk or sitting and staring at a cup of water when you are thirsty, hoping that somebody will notice. Thank you very much for your help and support. I look forward to the day that we can have a giant party and Claire will be able to get up and dance with, it just isn't going to happen if we don't fight for it.

The Face of Intimidation

Summer time seems to have brought a lot of very interesting things to the surface that involve our little Claire. It all started with our end of the year update on the IEP. Mind you that at home Claire has been saying all sorts of wonderful stuff on her talker and it has made life a bit easier. For example at dinner on Sunday she found a button that said, "I need to go to the bathroom." So Jared took her straight to the potty where he pulled down her DRY pants and then she sat down and peed, AWESOME on so many levels. So I am reading the note from the SLP that says that Claire does not understand the concept of choosing from a category of three to then get to more choices. Right, her talker has 45 icons and she found the page that led to the "I need to go to the bathroom." icon exactly when she needed it. As I read it I am thinking what child are they accessing, this is absurd! I thought about it for a while and came to the conclusion that after almost two years of working with Claire, some of the people still don't get it, aaaggggghhhhhh!!!! So it had become clear that I now need to take more drastic measures. This morning I talked with our SLP that we use for our home, the one who wrote the report to get the ECO2 because she believed that Claire had a lot to say (we like her a lot!). She was wanting to move our scheduled appointment back so that she could have more time to prepare. She was explaining that she wants to bring something in her visits that would help Claire to grow and make progress and she is having a hard time. We spoke about the SLP at school and her IEP remarks. It was then that she made a remark that really got me thinking. She said that it was good that the school SLP was retiring because when people have been at it a long time and they see something that they have never seen before and they don't know what to do it is intimidating. I laugh to myself as I type this but it is so true, Claire is terrifying, in a good sort of way, but still terrifying. We have so many really smart people on her team and people that really want to do what is best for her, but truthfully, no body has a clue, myself included. Poor little Claire. I know that she doesn't mean to scare people. Like when she gets upset because she needed to go potty and we don't make it and she becomes outraged which fades into deep sadness that she just can't do what she wants to. I can only imagine how intimidating it is for her. Every day is a huge mountain to climb, to use her muscles to chew and swallow and practice walking and survive Chloe's hugs. But she does it, and she does it with a big smile and pretty ribbons in her hair. I find myself renewed in my fight for her. I realize that most of the therapist she will ever work with never really know how to help her and will be overwhelmed by the many dimensions that is Claire. But I will help them to think that they can do, help them to understand how she works. And I know that all of it will be worth it, that the investment in Claire will always yield far more than I could ever dream of.

June Gloom

I have never been a person who really likes summer. I like to work, as a kid I liked being in school, I know, I'm a dork, but I'm a smart dork ;-) Anyway, I am so excited because I am enjoying summer. Maybe it's because the sun doesn't come out until after 11 most days and the high is about 79. This morning during my walk I couldn't help but notice the intense colors of the flowers. One of the things about they gray is that it makes color really pop. Wow, if that isn't a metaphor for my life! It is so true. Chloe is now doing things that only in my wildest dreams can I imagine Claire doing, and it is great! That was so hard to get out, deep breath. I am not sure what it is but I am really reveling in the greatness that is Chloe this week. She is so cute, so vibrant and absolutely amazing. I have found myself standing back and just enjoying as she gets her jacket and her purse and heads to the door when it is time to go get Claire from school. I do think that part of why I have been able to enjoy her is because Claire has let up a bit. Last week was long and painful, it just was. No school is no fun for our family. Now that Claire is in summer school her laughs are full, her smile is bright and my load seems a little lighter. So with the balance of shorter work days for Claire we are able to squeeze in a little more fun and still be rested enough to have it, it is great! I should say, it is great on the days that it works. Today was one of them and I am hoping that tomorrow is too.