Saturday, December 27, 2014

A little on the mend

Lu has still slept A LOT today, but she has had brief periods of time of being awake and smiling. We all even ate breakfast and lunch at the table together and she ate quite a bit! This morning as we were getting her in her chair, Chad and I were commenting on how she had a little color in her cheeks and we told her she was looking more like herself, and a few minutes later this is what she said:

And here are some photos that her Daddy couldn't quit taking of her a few hours later because we are just so happy to see her smiling:

So, things are looking up here. Thank goodness for breathing treatments, and modern-day medicines!  

Friday, December 26, 2014

"It sounds a little wet"

Lu woke up on Christmas Eve morning sounding phlegmy. She had her morning feed and napped, and when she woke up she had the "sick eyes" and was getting pale. She rested throughout the day, and we tried to enjoy a little gathering we have at my Nanny and Pappy's house at supper time, but she just couldn't handle being awake anymore. When I took her temperature before bed it was 102.2. She coughed and gagged and fussed all night long. She slept for pretty much all of Christmas Day, and by the evening her breathing had become rapid and shallow and very, very loud from the gunk trapped in her throat. We do not have a suction machine and she just couldn't seem to get the junk out of her throat. When her fever meds wore off, her temp was back up to 102.9 and then even on the medicine her fever was not going down a whole lot.

So, around 1:15am, Chad called the after hours doctor line through Grisinger and told the nurse Lu's symptoms and she said we had better go to the ER. When the ER doctor first listened to Lu's lungs she said, "They sound a little wet." My first instinct was to shout, "How dare you!" Let me add a little back story here. I have mentioned many times that pneumonia is a very common and very serious complication of Rett Syndrome. Children with Rett get it a lot. I have seen many girls spend weeks in the hospital trying to recover from pneumonia. In addition to the usual ways people get pneumonia, children with Rett can also get aspiration pneumonia from aspirating on their food or drink. So, any time in the past that Lu has been coughing, phlegmy, and had any kind of fever, I take her to the doctor...just to make sure. And each and every time the doctor has said her lungs sound good. And then this morning they sounded "a little wet". However, fortunately, after a lung x-Ray it was determined that she did not appear to have any pneumonia. The doctor did say though that aspiration pneumonia can take a little longer to show up, so we followed up with the pediatrician this afternoon. She said she sounded barely wheezy at all now. 

While at the hospital during the night, Lu had two breathing treatments of albuterol, more Tylenol, a steroid, and swabs for the flu. The nurse also was able to suction a bunch of junk from the back of her throat. But, she is still full of snot. So we left with a prescription for a nebulizer to use at home. We have  done two treatments on our own and we are staggering Advil and Tylenol to keep her temperature down. 

Here is what Lu has done for the past two and a half days:

And here is what she wanted to express while at the doctor appointment this afternoon:

So she doesn't have pneumonia and we are so, so, so very glad for that. But I'll tell you what, when that woman said her lungs sounded "a little bit wet" I felt like she had just slapped me across the face. Or socked me in the gut, or tore my heart right from my chest. It was difficult to accept the facts when we determined that Lu needed a feeding tube, but Rett Syndrome just takes control of her mouth and her body, and no matter what I tried to do to stop her from losing weight, it just didn't help. And seizures, well, there just isn't much I can do about those either. If they are going to happen, they will happen, and our only line of defense at this point is medication. But getting sick, getting "wet" sounding lungs, I have a whole heck of a lot more control over that. And so I might be a bit of a zealot about trying to keep Lu from getting sick. I don't send her to school. I don't let therapists come when they are even a little sick. But I know I can only do so much and we still certainly go out to all kinds of public places and have people over...I don't keep her in a bubble (yet). 

The plan now is to just get the sickness out of her before it settles in and tries to become pneumonia, or an ear infection, or whatever else it might want terrorize her with. She's just so pale and lethargic. I miss her. I miss her being awake and talking to us and smiling. I'm a little sad that she slept through Christmas. I am mostly sad because she and I worked really hard for months on homemade presents for everyone and she missed them being opened. She always gets pretty excited to give gifts and see people get excited about them.  There's always next year. 

Anyway, Chad and I had about two hours of sleep last night and some snippets of cat naps here and there throughout the day, so we are exhausted. I'll post a healthy picture when Lu gets better, which will hopefully be soon!

Wednesday, December 17, 2014


So, about the shaking episodes... Dr.  Sasha increased the depakote a second time and I kept a log for two weeks to see if there was improvement. She only had the episodes on 5 out of 15 days, whereas the first update I provided, before the second increase, was that she had episodes on 5 out of 9 days. So Dr. Sasha said to increase it just a little more. She said the medicine is helping. I asked if we were to assume then that they are in fact seizures, and she said, "Right." So, that's that then. Lucy is in fact having seizures. The depakote would not help if they were not seizures. 

Other big issues on our list of symptoms to try avoiding to whatever extent possible is pneumonia and scoliosis. Both of these have more of a possibility of being avoided, whereas seizures, and feeding issues, apraxia, just manifest from the disease. I think Lu has been (mildly) sick twice since leaving school almost a year ago, so we are doing well in the battle against pneumonia. As for scoliosis, we do our best to have her positioned straight, but comfortably as much as possible. No curvature has been detected in her spine so far. 

When I look at pictures like this one: 

I can't help but think back to my oblivious frame of mind at this time in Lu's life, and feel so sad. I guess maybe we did have those 8-9 months where we thought life was going to be run of the mill for her and us, but I can almost never look at it that way. I look at it more like we were fools back then to think that life was going to be easy, or fair.  Even up until a few months ago we thought maybe Lu could be in the small percentage of girls who don't have seizures. And two years ago we thought hopefully that she might also be able to continue to eat on her own. And when she was a year old we assumed she would learn to walk. And on September 27, 2009, when I found out I was pregnant, we never, ever assumed that our daughter would have a rare condition that was going to steal so many things from her. It's hard to not take things for granted when you have no reason not to. 

Speaking of assumptions, I keep forgetting to mention some assumptions that Chad and I would not allow to be made in these past months of trying to determine what was happening with Lu. First we went to the pediatrician who of course said the could be seizures, but he would talk to a neurologist in Danville. He spoke to the neuro on call, who has never even met Lu, and he said that he didn't even need to see the videos we had to be certain that they were seizures, since she has Rett Syndrome. Well, that is malarkey, and a dangerous assumption to make solely based on her diagnosis. As I have said, there are breath holding spells, and "Rett episodes" and all types of other "events" that can happen in girls with Rett besides just seizures. Unfortunately, Dr. Sasha was out of the country for the month when these first began, so we could not consult her. 

When we went to an appointment in Danville with the neurologist that has seen Lu in the past, he too was going to instantly assume they were seizures and just start her on medicine. We said, no, we thought an extended EEG should be done to try and determine if they were seizures. As I have mentioned, none were apparently seen during the EEG. However, when we did finally get up to see Dr. Sasha, she said they just could've missed it since Lucy's brain has abnormal seizure activity all the time. She still wasn't sure, but we trusted her decision to try the medicine because she is a specialist and we always have comete faith in her to do what's right for Lu. And now we know for sure.  But, I don't believe it is in anyone's best interest when doctors just make assumptions based on a minimal amount of information and say, "Let's throw medicine at it!" I mean, the arrogance of that first doctor to say that he didn't even need to see the video! Rett Syndrome is a diagnosis, but it is not a mold that all girls came out of. Everyone is different. 

I guess my point is, don't let doctors push you around! Not about your own health, or your child's health. I think they do that a lot, to a lot of people, because they think they need to seem important, like they are the alpha dogs and we are all just mongrels in their pack.  And I guess another point I tried to make is do your best to not take what you have in life for granted. Back when Lu was 9 months old, the new pediatrician we went to see because we had just moved here encouraged me to NOT have her evaluated by Early Intervention, even though she was not crawling, pushing up on her arms, or bearing any weight through her legs. That was my first experience with saying to myself, "He might be the doctor, but he is not the alpha dog of me and I'll do whatever I think is best for my baby!" And I did have her evaluated, and at that time she (oddly) didn't qualify, but 3 months later, when she still had made no progress, she did. And that was also the beginning of learning what it does really mean to not just be able to assume and take for granted that things in life will go your way. 

Rett Syndrome is a bully. It is the type of bully that is relentless. Chad and I are the type of people who stand up to bullies. And Rett Syndrome is the type of bully who just when you think you have fought hard enough to keep it at bay for awhile,  it sneaks around a corner and kicks you in the face. I have said more than anyone over these last months that I believed Lu's episodes were seizures, but I still had a really hard time getting the actual confirmation yesterday. 

Today's a new day, I'll get over it, to whatever extent a parent gets over these types of things.  It just makes for one more thing to worry about when we go somewhere. It's just one more reason why no one besides my mom and dad can take care of Lu if we want to go on a date, because there is just too much to know and do for people who don't see her everyday. It's just one more thing. 

Sunday, December 7, 2014

The Chill Out Chair

 I have mentioned in the past the plethora of chairs that we have for Lu in an effort for her to be: comfortable, upright, or laying down, not falling over,  able to sit on the floor, etc.  A chair also needs to either have a built in way for her to not fall out (ie. straps or a harness), or she needs to be able to sink down into it. It is just extremely hard to find the right seat for her. Her big bean bag chair is great for laying down and napping, but not great for letting her sit upright and engage with the world around her. Her wheelchair is better for times like that, but if she doesn't have her braces on and her feet strapped into the foot plates, then she slides down in her seat. Sometimes she likes to sit on the chaise, but she falls over to the side a lot.  And, when Lucy falls over, slides down, wants to sit up, or lay down, or has any other way she might want to alter her seating position, she just simply cannot. She just can't move her body like that. Therefore, I spend A LOT of time all day long repositioning her. Sliding her up, propping her up, sitting her back up, helping her lay down, it never ends. She doesn't even move herself much in her sleep anymore. Every night before I go to bed I turn her over so she isn't laying on one side, in the same position all night.

So, in what feels like a never-ending search for the "best" chair for Lu to relax comfortably, but still be upright, I discovered the "Chill Out Chair" made by a company called Freedom Concepts, last year. That's right, I have been longing for this chair for Lu for over a year. While it is considered a "special needs" item, it is not necessarily a piece of "durable medical equipment", and therefore it is not covered by insurance, and because it is a "special needs" chair, it has a very high price tag, because that is always the case. Hence, the year of coveting it, but not ever buying it.  

But, with the help of a hoagie sale spearheaded by our family and participated in by many more family members, friends, and acquaintances, we were finally able to buy Lu her very own Chill Out Chair!  And, I contacted the representative for PA and he had a few demo chairs that he offered to sell me for $500 less than a brand new one! I was ecstatic! So, for anyone else out there who also struggles daily to find a better position for their child or loved one (they come in sizes for everyone), I highly recommend a Chill Out Chair. I recommend you contact your state's rep and see if there are any demo chairs available, if you don't mind that. The cover on ours is actually antibacterial and completely machine washable, plus it matches our living room which was pretty lucky! So it's perfect! And if a person would prefer to buy a new one, they come in dozens of different fabrics and colors so they can fit right in with the furniture you already have. 

I don't know if in the pictures you can see what is so special about this chair, but it has a v-shape design that Lu sits down into and the entire thing is made of very high quality furniture foam. So, she sinks down into it enough that she won't fall out, and the foam is like a hug to her, which besides helping her sink in more, it is also like a hug for her, which helps her body stay still. 

And she can even nap in it!

So, I am clearly very excited about finally being able to get this for Lucy. She now has a safe and comfortable seat for relaxing, learning, watching tv, napping, whatever she wants or needs to do! As usual, we couldn't have done it without the never-ending support and love of our family and friends. 

Here is a link to the Chill Out Chair website for anyone interested in checking them out:

Wednesday, November 5, 2014

But...maybe seizures

We saw Dr. Sasha on Friday. After watching several new videos of the shaking episodes Lu has been having and listening to us explain how they have changed since they began, she said it is possible that the EEG reader may have missed something and that they could possibly be seizures. She said that Rett tremors generally happen when girls wake up. Lucy's episodes happen any time of the day and come out of the blue. And speaking of blue, that is the color her lips have been turning during some of them. We bought a little pulse oximeter to see how low her oxygen levels were getting and how quickly she is rebounding. They are getting down into the 70's (below 96 is undesirable) but they are coming back up almost immediately or within just a few minutes, so we don't need oxygen for her at this point. The shaking episodes are almost daily, and often several times a day. In addition to her lips turning blue, she has also started falling asleep afterward, sometimes for an hour or more.  They have also increased in length and severity; much more violent shaking, sometimes her head gets "stuck" turned to the side, and a few times her eyes have been stuck upward. While all of that sounds horrific (and it is to us), Dr. Sasha said that if they are seizures, they are mild. They are short and since her oxygen level returns to normal, no brain damage should take place. 

So, Dr. Sasha said to start a low dose of Depakote to see if it helps. If these are not seizures, it won't help. We gave her the first dose on Tuesday morning, and it will take some time to start working if it's going to. Well on Tuesday she had three giant "shakers" as we call them, also combined with a "head turner" each time, blue lips once, and eyes stuck upward during one of them. She slept most of the day between these episodes. 

Unless you have been a parent who has watched your child have some kind of episode like this, seizure or not, and then sleep the day away, I don't think I can accurately explain how emotionally wiped out I was at the end of Tuesday. I mean, I know a person can imagine how it might feel, but just not to the extent of having experienced it. We got a video monitor quite awhile ago, but when these started we got a second camera for in the living room, so I can always see Lu. Therefore, whether I'm taking Finn out, taking a pee, trying to get dressed...whatever, my eyes are glued to the screen. So, when I see her arms going up and out, which is what happens before an episode begins, I come running, even though there just isn't a damn thing I can do to help her. I just hold her hand, smile a little, and assure her that it'll be over soon and it will be okay. 

I still don't feel comfortable sharing a video, even if it could be helpful to someone desperately searching for clues as to whether their child is or is not having a seizure, but I have decided to include a still picture I took from one of the videos. It is what her face commonly looks like during these episodes. It is of her precious little face that I look at while she shakes uncontrollably, trying to keep myself together for her sake. It is an accurate depiction of how I think she feels during the episodes, which makes me enraged and devastated because it is clearly a look of terror.  Here it is:

She was frozen to the side during this video so I was able to get a picture because she was not shaking much at this point, but she started toward the end. 

And then this is what I have seen more often than not in the past few days and weeks:

Not usually laying on Chad, but just exhausted and completely wiped out. 

So, we will see if the depakote helps. It's such a conflicting feeling that Chad and I have; on one hand we hope it helps so she can go back to herself and not have to live like this, but then if it works it means she now also has seizures, on top of everything else. If it doesn't work, and they aren't seizures, then there might Not be anything we can do for them. We have always known that seizures were a very likely possibility. I have often said, "She could have one right now...or right now...or right now." We knew the could just come out of nowhere, and then they did...maybe. We'll see what happens. 

Saturday, October 18, 2014

2nd Annual Shaffer Halloween Bash

Last year we started a tradition of having a little Halloween party for Lu and her pals so she can enjoy Halloween without the usual trick or treating part. Being that we live in a very rural area, if we wanted to take Lu trick or treating it would be an agonizing process of getting her in and out of the car and either awkwardly carrying her to the doors or getting her wheelchair in and out over and she is in bed by 7:00. So, trick or treating just isn't a super feasible option for us. And of course she wouldn't be able to eat most of the "treats" that she would get anyway. So, we have a little party so she can dress up and see her friends dressed up and eat snacks and have fun.

Lucy's shaking episodes have been making her fall asleep afterward for the past week and unfortunately she had one about ten minutes before party time. She slept for a little bit, but we were able to wake her for the party. While we were eating she said on her Tobii, "I don't like it, it noisy". We talked about how parties are usually a little noisy and I reminded her of how excited she had been all morning for the party. She wasn't crying or upset, and was actually smiling, and eventually it got a little quieter so she seemed ok.

Lucy has recently become a big fan of Tinkerbell from watching the Tinkerbell movies we borrowed from the library, and when I asked her if she wanted to be Tink for Halloween she enthusiastically nodded yes!  I found her this adorable costume at Kid to Kid:

I made a homemade Peter Pan costume and Chad was a homemade pirate:

And all of her sweet friends came to be with her:

I had also decided the night before that we would play a version of charades where we would be playing fast and loose with the rules, like the only rule was just don't say what you are trying to be! Chad and I came up with a bunch of Halloween characters and things and then I put them all into Lu's Tobii. I included them in a blank page within "special events" in her PODD because that is where all of the holiday words are. So this way she could guess along with the other kids. And in the morning I was showing her the page and telling her what we were going to do and she kept choosing Frankenstein over and over again, so I asked her if she wanted to act out Frankenstein for everyone. She said yes, so I changed the Frankenstein button to say this:

So when she activated it, it wouldn't say Frankenstein, and then we tried to walk like Frankenstein. When it came time to do it in front of everyone, I gave her a little time to activate it, but then I did it for her. When she is in front of a group like that I always worry about her feeling too much pressure and it being even harder to do what she wants. So I activated it, she did her act and someone guessed! Then a few minutes later she activated it on her own! It was great! 

What was also great was just the whole party in general. I don't know if people realize how much it means to us that they come and participate in a Lucy friendly way. We just feel so grateful to have an amazing group of friends and family that support us and love us and join us when we need to do things differently. We take Lucy out into the world all the time, but sometimes we just like to bring the world to her. Instead of figuring out how she will fit into what we want to do, we make everything fit around her. She enjoyed baked beans, Mac and cheese, and Reese cups for lunch, some of her favorites. We played a game pretty much designed with her in mind so she could actively participate, and we brought everyone to her. Sometimes it just needs to be like that and we are lucky to have so many people in our lives that understand that. 

Wednesday, October 8, 2014

Seizures and not seizures

Rett Syndrome is so maddeningly stupid that I just can't get over it sometimes. Things had been going really well with Lu since getting her feeding tube, so I suppose we were due for something to change, and change it did. About a month or so ago Lu started having some episodes that really looked like seizures, for the most part. I have some excellent videos, but have decided to just explain them and not show Lu in such a vulnerable state to the whole world. 

The most severe form of these episodes includes her arms and legs suddenly stiffening, her arms slowly going out to the sides and raising into the air, and then being followed by uncontrollable shaking. During the shaking her eyes are huge, her pupils are dilated, her face is pale and splotchy, and she is not breathing. They last much less than a minute, more between 30 and 45 seconds. These shaking spells are happening approximately once a day. Sometimes there's no shaking in a day, and sometimes it happens more than once in a day. Then, all throughout the day, Lu is also having very brief spells with just the stiffening and arm raising, but no shaking.

So, off we went to the third extended EEG if Lucy's lifetime. This time was relatively painless since these are occurring so often, we only had to spend one night in the hospital, and found out they are not seizures. Yes, it is great news. We don't have to give her a medication that might make her groggy, and we don't have to worry that they won't respond to medication and damage will be caused to her brain. However, 80% of all people with Rett will experience at least one seizure in their lifetime. Yes, maybe Lucy will be in that lucky 20%, but I'm just not holding my breath. We haven't missed out on any of the other big symptoms of Rett, and I just don't feel it's realistic to assume that we will miss out on seizures. I hope we do...more than anything else, oh I hope we do. They terrify me. People die from them. 

Plus, since they are not seizures, there is nothing we can do, that we know of right now, to help these spells. When she just raises her arms and goes stiff for a few seconds, I don't get too worked up, and it doesn't really disrupt her life. But, the "shakers" as we have started to refer to them, are utterly heartbreaking. Lu looks scared and confused, and I can't help her. We can just hold her hand, and smile and tell her it's okay, it'll be over soon. We will see Dr. Sasha at the end of the month, and she may or may not have any other thoughts on what they could be. But, chances are that since they are not seizures they are just another thing that Rett Syndrome is doing to Lucy's body, and we just have to let it happen and get used to it, like tooth grinding, breath holding, and hand flapping. It just is what it is I guess. 

Rett Syndrome is the pits...
Here is Lu covered in electrodes...and still smiling.

And then look what the electrodes did to her skin. She has/had big scabs all over her head. It makes my stomach sick that she has to go through these things.

Tuesday, October 7, 2014

Teaching Lu

I just wanted to share a link to a sister blog I have created called Teaching Lu. As the title suggests, it will be all about how I educate Lu. It will be about activities that we do, what works, what doesn't, and how I decide how to teach her. A LOT goes into teaching Lu. A LOT goes into helping Lu express anything, let alone information that she has learned. I am pretty excited to write about it as I think about it all the time.  It will be interesting to see if readers have ideas or tips to help me out, as well as my ideas, thoughts, successes, and failures being useful to others.

Here is the link, and thanks for reading!

Teaching Lu

Sunday, September 21, 2014


I read this article by a father of a son with special needs yesterday. I have read a similar one in the past. Take a moment to read it:

It raises a good point that most people might never even think about, the statement, "as long as it's healthy", but then what if "it" isn't? Life will end? You won't love your baby the same? I realize that it's a statement that is just part of small talk. It's what people say when they are expecting a baby, but again I ask, "What if it isn't?" I think it's a stupid thing to say, and I'm sure I said it plenty of times, without a second thought. 

What I have been having trouble sorting out in my brain is the idea that Lucy is not healthy. Technically, by definition, I guess she's not. Lu can't talk with her mouth, she cannot walk independently, she cannot use her hands functionally, she has to have a feeding tube because her mouth isn't capable of efficiently eating enough food to nourish her body, she holds her breath, grinds her teeth, has low muscle tone, tremors, wears braces on her legs, has chronic constipation, gas, and reflux, and takes a pile of medicine daily. AND, now we are worried about seizures again because Lu has started having almost daily episodes of stiff arms, wide confused eyes with dilated pupils, pale splotchy face, and uncontrollable shaking. In the past ten days she has had 1-2 episodes 8 out of the 10 days. We are going in for yet another extended EEG on September 30th to determine what is happening and if seizure medication is needed. So, just one more point against "health" I guess. 

In my mind, I have such a clear separation of who Lucy is and what Rett Syndrome is, that it guess I don't consider her to be "unhealthy". And when I hear people talking about their relief at how healthy their baby or child is, how they feel like they have won a grand prize, I immediately feel indignant. Like, just because Lucy is not "healthy", I didn't win a prize? Like I don't think Lucy is the most amazing, beautiful, incredible child we ever could've created because she was born "unhealthy"? Once, when we were at the training to learn the PODD, another mother asked me in the restroom if I was a mother of a child with Rett and I said yes, and she said, "Oh I'm sorry." I get why she said it, I'm sorry too that Lucy was born with this horrible, debilitating condition, but I have never, ever once been sorry that I am Lucy's mother and as soon as she said it, I felt like she also socked me in the gut.  I am sad all of the time that Lucy's life has to be so hard for her and, that there is so much that just isn't possible for us as a family, but I never feel like I didn't win just as big as every other mother I meet. 

Lucy is Lucy. She is a whole person whose mind, and heart are 100% healthy. Rett Syndrome is a condition that makes her body not work, and in essence makes her "unhealthy". I've said this before, but I have been thinking about it a lot, because Rett Syndrome is not all she is, it is not who she is, she just has it.  It's an obstacle that we have to overcome each day. But in spite of it, her person, her essence, all that she is comes shining through all the time. That's why I guess I don't think of her as "unhealthy" on a regular basis, I just think of her as Lucy; my daughter who loves to cuddle, and play babies and Mr. Potato Heads, and read all kinds of books. My daughter who loves to swing, and ride her bike, and who especially loves to swim. My daughter who loves cheese, and Mulan, and the Magic Treehouse books that she and her Daddy have been reading.  My daughter, the artist:


The author:
(Lu used the alphabet on her Tobii to "write" this.)

The beauty:

It just so happens that she also has Rett Syndrome. 

Tuesday, September 2, 2014

The Hard Way

Last Sunday morning began like any other morning. Lu had her feed, watched cartoons, and was in a fine mood. When we brought her out to the table for breakfast (chocolate chip pancakes!) she got very upset. Tears, quivering lip, scrunched up face, heart breaking cries...the whole works. I persevered for a few bites of pancake, which she ate, but her sadness continued to increase in intensity. I asked her to use her PODD on her Tobii to try and tell us what was wrong. When it opened she immediately said, "I want, cuddle".  I took her over to the couch and after about 10 minutes of cuddling this is what happened:
And she slept for over a half hour, which is a long nap for Lu. We then returned to the table, Lucy full of smiles, and ate our reheated pancakes. At this point, it seems like a simple enough thing that happened: I asked why she was crying, she used her Tobii to tell me, and then I fixed it. But it isn't simple, and the process to getting here, to this point, which I still view as a very beginning point, has been anything but easy. 

The PODD system itself is quite a process to learn.  It is an awkward feeling at first when you begin to carry the book around everywhere with you, especially because you feel like everybody notices. I felt nervous and self-conscious.  It is hard to "Be Zen", like Gayle Porter, the creator of PODD encourages you to be, when you are a nervous wreck about making sure you model enough to teach your child how to use the system. It can take a long time for a child with severe apraxia, such as children with Rett experience, to have a reliable yes and no head movement. 

Then...we decided to begin the process of acquiring her Tobii. I contacted our local sales rep. We did a trial of both the Tobii and the Dynavox eye gaze system. Our early intervention speech therapist wrote out a long, and in depth report on how well Lucy used the Tobii. We submitted everything. Our primary insurance approved it right away, but Lu's secondary insurance, her state insurance, stubbornly denied it over and over. We got it anyway by stating we would pay any part that the primary wouldn't. Luckily we didn't have to pay anything. And that was all just to get it! I taught myself to program it, to make pages, games, and books for Lucy. With the help of Linda Burkhart, our PODD trainer, I figured out how to get the best version of the PODD on the Tobii, and it was a whole different piece of software that I then had to learn, and figure out how to program those pages.

 And those are all parts where Lu wasn't even involved. None of that included actually teaching her how to use these systems. We have been so fortunate to have wonderful speech therapists throughout this journey, first my cousin Danielle who worked with Lucy three days a week for two years, and now our therapist, Roxann, through the intermediate unit.  With Danielle we started from nothing and Lucy learned to make choices, to use her head to indicate yes and no, and then began to learn to use the PODD. And now with Roxann, Lucy has the basics down and is learning how to actually use language.  

I model language to her all day with both her paper PODD book, and on her Tobii, and of course just by talking to her all day long. We always make sure she has one or both with her no matter where she is. Our old pt gave us a mount for on her wheelchair, so her Tobii can always be with her when we are out and about. In her Tobii, there are many places where she can say she wants to use her book, and in her book she can say she wants to use her Tobii. And, I can get almost any information from her with simple yes and no questions as well.  

One of the most important things I took away from our PODD training was that the PODD is not work, it is Lucy's voice. I have said this over, and over, and over again to anyone who has needed to hear it, and I believe that keeping that attitude always in the front of my mind is what has made Lucy love it so much, and what makes her excel at using it. It is hers. She can use it or not. We don't "practice" using it, or ever make her use it. Look at her face in this picture below. We were adding items to lists in her new PODD book which has 64 pictures per page.
She just cares so much. She knows it is all for her, all so we can know her and know what she has to say.

But, it is hard. I will never deny that there are days when I drop the ball and maybe don't model much. I will also never deny that there are days, and times of the day, where it all just exhausts me. On top of all that goes into Lucy having meaningful communication, then we add her wide array of equipment that she needs just to have her body positioned safely and comfortably. The next time you witness a child just standing and talking, or even yourself standing and talking, think of this picture:

You can see extra wide shoes to go over special braces that are needed for buckling into a less than tiny standing frame. Then, her Tobii, mounted on the rolling floor mount that is so weird and awkward I've almost made a habit out of banging my toes off of it. All of this dragged back the hall so Lu could stand and talk to me while I put laundry away. It totally sucks, but I do it because she needs it. She needs to stand, she needs to stay strong, but even more importantly, it is her right as a human to be able to communicate with me whenever she wants to, and so that includes her communication system always being available to her. 

I just feel so strongly that all humans, regardless of their abilities, have the absolute right to be able to communicate with the world. "They are nonverbal" should not be the end of the sentence. That's just not all their is to it. Yes, I can generally tell when Lu is hungry, tired, needs to poop, is bored, etc., but that is not exactly rocket science, that's just being a mother. I would never even dream of saying that's all I need to know about my daughter, and I don't think any other parents should have to settle for that either. In the short time we have been in this world of a Rett Syndrome and learning all their is to know about it, what I have noticed is that there might be a lack of aggression on the part of speech therapists to obtain actual, functional, robust communication systems for children who are nonverbal. Not in our personal experience of course, but in other parents I have met. I did a training on Rett at our school district's paraprofessional conference last month, and in the two sessions I had, there were a handful of aides who worked with children who were nonverbal, and not a single one of them had a communication system of any kind! NOTHING! 

In my opinion, it is unacceptable for a human being to not have a means of communication. That is just my opinion of course, which I can share because this is my blog. It is also my opinion that communication systems are lacking in children's lives because it is hard work. Lucy's speech therapists and Chad and I have busted our butts, as I described above, for the past two years to get her to where she is now.  And I say all the time that this is just the beginning for her, and I imagine that in not too many years, she will be able to use her Tobii as fluently as if she were using her mouth. I believe that with all of my heart. I believe it is our right (and obligation) as parents of children who cannot communicate in the typical fashion to not just request that they be provided with alternative means of communicating, but that we demand it. It is their right. "Communication is the essence of human life..."says ASHA, the American Speech-Language-Hearing Association. I've shared the entire quote before, but that is the part that always pops into my head. Lucy deserves everything in life that all other humans get to enjoy automatically, even if it requires huge amounts of effort on the part of everyone around her. She just deserves it. 

Friday, August 15, 2014

Strolling for a Cure

On September 6th, we will be joining other families in a strollathon, the signature fundraiser of (formerly known as the International Rett Syndrome Foundation) to raise much needed funds for the search for a cure. I have spoken recently about my feelings about a cure and how it simply terrifies me to think about it too long and too hard because my hopes just start to soar. But regardless of my protective coping skills, progress is being made all of the time in the search for ultimately a cure, but also treatments for symptoms. 

In 2007, Rett Syndrome was reversed in mice in a lab. Click on the link below and watch the first two videos on the page. The first is before the reversal, and the second is after. That could be Lucy someday. But isn't everything always about money? Unfortunately it is, and we as a community of parents and loved ones of girls with this miserable condition are often the ones out beating the streets, asking (begging/pleading) for the crucial funds to continue research so that our sweet girls might someday get to live full lives. It costs money to safely translate the success in mice to humans and we just want to help move that along as much as we can. 

There are also several very promising clinical trials taking place throughout the world, testing medications that could change Lucy's life. They also cost a lot of money. I know that money doesn't grow on trees, and that everybody works hard for what they have.  We are just asking that if anybody who can spare anything, ANY amount, would be willing to sponsor us in the strollathon, we would be eternally grateful to you and thankful for your caring and generosity. We just want to see a cure within Lucy's lifetime, and from what we hear, this is a very real possibility, but not without the funds that keep the wheels turning. 

Anybody who is interested is more than welcome to also join our team and help to raise money by getting their own sponsors, and participating in the strollathon with us. The more the merrier!

For anyone else, please feel free to make a donation that is comfortable for you. Again, the Shaffer's and the Rett community will be forever thankful to you!

Please visit the link below to join Team Lucy OR to make your donation:

Team Lucy's Strollathon Page

Here's Lu helping me to prepare a container for some Brussels sprout seeds yesterday afternoon. She always asks to garden. What if someday she could do it without a walker, braces on her legs, and me needing to help her hold all of the tools, and guide her hands for planting the seeds? What if she could do that someday? 

Saturday, August 9, 2014

Every Single Word

You know, I wonder if people who read my blog ever think, "Ok Julie, we get it, Lucy is awesome, and she talks to you all the time!"  But what I really want others to understand is that Lucy talking to us, communicating with us, and sharing herself and her personality with us NEVER, EVER gets old! Once a person [doctor] tells you there will be nothing your child can do, she will basically be a vegetable, and then all day every day she proves him wrong, you never forget what he said. I am never less amazed, or delighted, and I am always thankful every single time she talks to us. Even when she's just exploring and "babbling" by saying random words, she is talking! That might sound unrealistic, yeah, sure Julie, you cherish every word that your daughter utters all day long...but, yeah, I really, really do. 

In the past couple of weeks Lu has been developing a little of the "mine" attitude that children go through and we are loving it! We talk to her about sharing and not being greedy, but at the same time, it makes our hearts melt to have Lu doing anything "developmentally appropriate" such as claiming everything as hers. She loves chocolate no-bake cookies. I don't understand why they don't make her choke, but they don't and she wolfs them down.  I don't make them because my Mom makes them pretty often and sends some down to us. The other night before supper I brought some in and showed them to Lu and said Grammy sent some of her favorite cookies. Well, after supper, Chad opened the container to have one and Lu immediately said, "Mine! Mine!" with her Tobii. It was adorable! And so unexpected! We reminded her that Grammy sent them for everyone and we would share them. Then, a few nights later, also at supper, Lucy said, "I want, mine channel, mine, mine, channel" or some similar combination of those words. And she seemed to be looking at Chad. I asked if she wanted to watch her channel when she and Daddy watch cartoons, and she emphatically nodded "yes"! 

Chad and I tell Lu all the time if she thinks of anything in particular that she wants for supper to let us know and one morning she said, 

Needless to say spaghetti was served for supper that night and Lu and I made a homemade apple pie in the afternoon to have for dessert. One day last week I made a pageset up in her Tobii with some fabric choices from the site to see what Lucy might like for a pair of arm braces she has started to need. Immediately, a pattern caught her eye, and she repeated it over and over, even after I encouraged her to explore her other options, she still constantly came back to that one choice. After some time for Lu to look at all of her choices I asked her which was her favorite and not surprisingly she chose her first choice. She knows what she wants and is really starting to be able to tell us more and more, so she doesn't have to just settle for whatever I or anybody else chooses for her. 

Yesterday morning Lucy said:
Why, yes, yes we do, Lu. Perfect observation.

I cut my finger badly two week ago and for like a half hour it just wouldn't quit bleeding. When I finally got it under control Lu and I sat down to eat lunch and she said with her Tobii, "Are you alright?" That us all one button she can choose. She might want to hog all the cookies, but she still has compassion and cares about others which to me is one the most important character traits to instill in a child. 

And last night at supper, I told her she could have [one of Grammy's] cookies for dessert and then chad reminded me that we also have ice cream and hot fudge that she could have. I said to her, "Or you can have ice cream if you want." She said with her Tobii that she wanted to use her book. Right now Lucy is transitioning between a 20 per page book to a 64 per page and when she says she wants to use her book, I give her the choice of which she wants to use. She has mostly been choosing her new book, but last night she chose her old book and said, "I do, want it". I asked if she meant she wanted the ice cream and she very emphatically nodded "yes"! 

I said to Chad last night that I believe eventually Lucy will use her alternative communication system as naturally and fluently as we speak with our mouths. I think getting girls started as early as possible is critical to helping them understand that this is just how they do it, and it becomes the norm to them. It often occurs to me, kind of surprisingly at times,  that Lucy doesn't talk with her mouth. We talk to each other so much all day, that I seldom dwell on her being "nonverbal".  Even when we might be on the couch, in the middle of a crying episode where she is so distraught that she won't even look at her book or her Tobii, she will still often answer my yes and no questions to determine if she knows what is making her cry so I can possibly help. Does Lu use her mouth to speak to us, aside from the occasional, no, yeah, ma, da, nope she doesn't, but does she let the world know who Lucy Shaffer is anyway, uh yeah, all day, every day!

Thursday, July 31, 2014

All That I Am?

When I decided not to return to work, not even part-time, after Lucy was born, I went in one day to tell my boss about my decision and to tell everyone goodbye.  I don't know that he was surprised by my decision. I think maybe he said something about how some women can be stay-at-home-moms and some can't, but he knew I could be. But the one thing he said that I have always remembered had to do with not forgetting that there is still a world outside of being a mother.  I don't remember the exact words he used, and I have always tried to remember how he put it because I think I knew, with Lu being only a month or so old at that time, that he was wrong. Not wrong entirely, of course there still is a whole world on the other side of motherhood, but there is nothing in "the world" that I have ever, ever cared about as much as I care about being Lucy's mother. I knew that way back then, when I still had no reason to believe that Lucy's life was going to be any different than any other little girl's.

I kind of hate Facebook. I get on it, but it often just seems so trivial. I don't just give it up entirely because I can stay in contact with other parents and professionals of girls with Rett. That is super important to me.  I don't post much, mostly just new blog posts.  What prompted this post was a realization that came to me this morning while posting a news article on FB that my friend shared with me by another mother of a child with a disability.   Anything I post on FB that is not a picture of Lu or sharing a new blog post, almost always has something  to do with disability awareness. It's what I write about, it's what I post about, and it's often what I talk about.  Is it all that I am? Have I forgotten that there is a world outside of Lucy's disabilities? I suppose some might say yes, but what I say is that accentuating Lucy's ABILITIES within that outside world is almost all that matters to me these days. On Monday we had a tear-free trip to the library.  This has not been the case on our past few trips and I literally could not stop talking about it all afternoon. I was just so happy. And while we were there, I started asking Lu if she wanted this book or that book and she said, with her Tobii, "I don't want to do it" and I asked if she wanted to choose books herself and she said, "No". I think maybe she gets overwhelmed with all of the choosing and being out somewhere in public at the same time. So I chose most of them, but still did ask her just occasionally if she thought one looked good, and that seemed okay to her.  Nothing is more important to me than helping Lu live in that outside world as easily as she can. So, that day we spent the morning talking about going to the library and prepping for it, we spent the afternoon actually going there, and then I gushed about our success for hours afterward. 

Is being Lucy's mom all that is left of me? Absolutely not! I still love to read, and swim, and crochet, and cook, and collect recipes, and attempt to garden.  I am still conducting an informal, spread out over many years "research project" on hippies, the 60's, and Woodstock.  I have started trying to take a nice bath each Sunday night, and pumicing my feet, just so I can relax and pamper myself a bit (it sure would be better if someone else would pumice my feet for me, but I digress.)  I exercise almost daily.  I still have my own dreams and goals.  But...not one of them means more to me than Lucy, and every aspect of being her mother. And besides providing her with the most exceptional care that I can manage, empowering her as a human with worth is what is at the very tippy top of my list of priorities.  And I guess this goal makes me almost obsessively manic about all of the things that will make it possible for her to live a full life.  

Is being an advocate for people with disabilities my new identity? Maybe, and I hope so.  Is being a communication enthusiast for people with complex communication needs a huge part of my life these days? Yep. Am I a nurse, a teacher, an activities director, a physical therapist, speech therapist, and occupational therapist? I am.  And all of these roles are because I am Lucy's mother. Is that all that I am, JUST a mother? It's all that I need to be. 

Thursday, July 24, 2014

Longing For Winter

Only when we are in Nanny and Pappy's pool or eating good food at a picinic am I in favor of summer this year.  I am feeling intolerable about any heat, and I find myself almost counting down to fall.  This has all been pretty baffling to me as I have generally loved summer and hated winter for most of my life. So, when I began seeing red and yellow leaves in the yard last week, I instantly felt relieved and then confused by my relief.   Why do I dread summer this year? I have been thinking and thinking about it and gradually came to the realization that winter is easy on me and Lu. I know, for those of you that must leave the house for work, school, etc. it is a nightmare at times, but if the roads are bad, or it's too cold, we don't have to go anywhere.  We are obliged to remain warm and safe in our sanctuary.  But in summer...we are expected to go places.  

Also about summer, kids are out of school, schedules are forgotten and unnecessary, and there is a constant feeling of freedom...unless you are us. We still have feedings every four hours.  It is still extremely difficult to get around to places. It's too hot for Lu a lot of the time. And regardless of the season, Lu still demands to be in bed at 7. So maybe I like winter better because everyone else has more of a structured life too, and then we don't feel so left behind. 

Right now we are waiting on some volunteers to build us a ramp.  We have the supplies sitting in the driveway and we are just waiting for the carpenters to have time.  Having a ramp I think (hope) will make getting outside a ton easier for us as I can then keep Lucy's wheelchair in the house and load her up and just zip outside to the swingset, to the yard, for a walk or whatever we want to do.  As of right now, I have to go out to the car, unload her wheelchair, load her into it after carrying all 40 pounds and 41 inches of her outside, and then reverse the whole process when we are done.  So, all of the things I imagine us doing, like catching bugs, swinging, picking flowers, gardening, gathering supplies for nature art...all seem so close, but so far away when I look out the window.  Everything is right there, but this whole awkward and laborious process stands in our way.  It's like all of the fun we could be having is mocking me every day, and if summer would just go away, then I wouldn't feel guilty for not doing more outside.  Let me tell you one thing though: when I do get her outside to ride her bike, or swing, or anything else I have mentioned, I am so damn proud of myself.  In spite of the fact that a typical child could do five fun things in the time it takes us to do one, I am just happy that we got that one thing done, and Lu had fun. 

For example, we did get a little "gardening" done the other day.  It was on the deck, and in containers, but we still had a great time doing it! We planted basil, Venus Flytrap seeds, peas, and a Brussels sprout plant that we thought had died, but it came back to life.  I helped Lu get her hands right in the dirt and she even had it all over her lap!  Yes, Lucy actually getting dirty was one of my favorite parts of the whole thing!  And, she also was able to hold the pea seeds in her hand, and then drop them in the trench we made for them while I just supported her arm to keep it steady. 

I guess maybe what I'm saying is that there is just so much pressure to have a big freaking blast in the summer, and I've had enough of it for now. We go to the pool every single chance we get, which is most days, and not only does Lu LOVE it, but it is good for her, so that is a thing we can do and I have gotten pretty adept at the process of getting her there and into the water, even if no one is there to help me. The pool is the only thing I will lament about the end of summer. (And getting to go for walks with my Mom in the evening.) I miss it desperately all winter for both Lu and myself because I too love to swim.  Anyway, we are at least lucky to have that so easily accessible and lucky that Lu enjoys it and it makes her happy.  But, I will still not be sad when the pressure to go outside and have the time of our lives doing super fun and cool summer activities has passed.  I guess this year I am a Grinch about summer which probably means I should only allow myself to be half as Grinchy about Christmas this year. Thanks for listening to my whining!

Sunday, July 20, 2014

The Diving Bell and the Butterfly: a book report for grown ups

I just finished a book titled, "The Diving Bell and the Butterfly" by a Jean-Dominique Bauby.  The book also became a "major motion picture", and was published in 1997, so many people may already know his story and I am just now catching up, but I wanted to share a little about the book and about Bauby, and why I think every able-bodied person would be doing themselves a favor to read is memoir.

Jean-Dominque Bauby was the editor-in-chief of French Elle magazine. When he was 43 years old he had a massive stroke which resulted in something called "locked-in syndrome".  Locked-in syndrome is just what it sounds like: Jean-Dominique was locked inside of his body and the only thing he could move was his left eyelid.  And with his left eyelid he wrote this short memoir.  A partner dictated for him as he spelled out each word, letter by letter, using partner assisted scanning, just like we do with Lucy's PODD book.  His speech therapist created an alphabet grid that he used to choose each letter of each word by blinking his eyelid.  Even if this was a book about how mushrooms grow on poop, I think everybody should still read it simply out of respect for Bauby and his perseverance.  But it is not about mushrooms growing on poop, it is about how his life as he knew it ended and his experiences being confined to a hospital and trapped in his own body.

I was first interested in reading it mostly because of the amazing way in which it was written, but Locked-in Syndrome very obviously has many similarities to what children with Rett Syndrome experience every day.  The main difference being that while Bauby's body did not move, Lucy's never stops, but neither of them have/had any control over them. And both children with Rett and Bauby were and are completely cognitively aware of the prisons that their bodies are for them.  

This book is sad, and funny, and heart-breaking, all within 132 short pages. Bauby viewed his condition with alternating grief and sarcasm, and even with optimism at times.  But he seemed to have a strength that wouldn't allow him to just wallow in his own despair.  One of my favorite lines from the book was in regard to Bauby refusing to wear the generic hospital sweat suits and insisting instead on wearing his own clothes when he ventured out of his room.  His reasoning was: "If I must drool, I may as well drool on cashmere." 

Jean-Dominique Bauby died two days after the French publication if his book.

Here is a photo I just grabbed from Google before the stroke:

And here is after, it looks like he is dictating to his assistant:

Imagine that we didn't have all of the abilities that we do.  Imagine that at the end of a day that started perfectly ordinary, ends with us in a coma.  Instead of always wishing for better "luck", or more of this or less of that, perhaps it might do us all a bit of good to just stop occasionally, and be glad that we have what we have.  Maybe just feel grateful that we can put one foot in front of another, and speak one word after another until we are tired of walking and talking.  I'm sure Jean-Dominique Bauby never thought to himself, prior to his stroke, "Man, I'm glad I am not completely paralyzed." And certainly I realize that if Lucy didn't have the challenges that she does, I would probably take her perfect health for granted.  But I guess my point is just...don't. Don't take what you have for granted. Try to remind yourself every now and then just how lucky you are...and totally read this book. You will be glad you did. 

Friday, July 18, 2014

Not "if", but "when"

Ever since our first appointment with Dr. Sasha two years ago, I have been always on the verge of writing a post about the possibility of a cure for a Rett Syndrome, since she says there will be one. Currently at the Rett Center that Dr. Sasha is the director of, she is running a trial for medications called statins, or cholesterol medications.  She has included only older girls, and only girls who could walk in the first wave.  She explained to us in the spring that by using girls who can walk, she is able to see results more quickly than with girls who are not currently ambulatory.  This past week, another Rett mom shared a link to a video with me of Dr. Sasha giving a speech at a fundraising event recently.  She thanked all of the supporters that have donated and raised funds over the years and she said she was happy that she finally had something to report.  I'm going to include quotes from her speech here, but I will also include a link to my Understanding Lu Facebook page where I posted the video for anyone that would like to see the whole video. I encourage everyone who can to do so!

Here are quotes of Dr. Sasha's: 

"Just like every other doctor and scientist, I do know the cure is on it's way.  We have very solid, robust evidence.  So, we replace the question 'if' with the question 'when'." 

 "Many of the girls who were treated can walk and run up stairs for the first time in their lives."

"Some of the girls who were treated speak words again."

And here is an article with more detailed information on the statins and why they may help:

So, a medication is helping girls walk better and speak again.  I literally nearly had a panic attack when I heard Dr. Sasha speak the words I have quoted above.  I was instantly bawling. I imagine a panic attack might seem like a confusing reaction, and quite frankly it is, and it is why I have always hesitated to write much about my feelings about a cure.  I want it just as heart-wrenchingly, desperately as every other parent with a daughter with Rett, there is no doubt about that.  What throws me into a panic is how quickly my hopes soar higher than you can imagine, and I am terrified of getting my hopes up. It's like a kite that the wind takes away from you and you are afraid that you are going to lose it before you can get it reeled back in again. There are so many, many people that I have encountered virtually and in real life who just go ahead and expect a cure to come, maybe even depend on it as a future reality.  Everybody has their own ways of viewing things and dealing with life, but mine is to expect that Lucy will have Rett Syndrome for the foreseeable future and to work unceasingly to figure out how to make that future as functional, healthy, and happy as possible for her.  And then, if or when a cure becomes part of our reality someday, she will be as ready as she can be to learn how to do things that might then be possible for her, like walking independently and talking, that she just can't manage right now.  

I also feel like it is a delicate situation wherein I want Lu to understand that we want her to be healthy and to not have the struggles that she has, so that she may be able to have a full life some day, but I do not want her to think that she isn't good enough as she is and that all I want is to change her.  She is amazing...I've said that a jillion times...just how she is.  However, I would do anything for her to be able to breath regularly, to use her hands, to walk, to talk, and to eat and drink without choking. But, if she never can, we will love her just the same.  The world won't end.  It already did for a second on February 27, 2012 when we got her diagnosis, but it started again.

I am vehemently against denial, especially when it has come to Lucy and Rett Syndrome.  It is what it is, and I don't let myself or anyone else in Lucy's life hide from her reality.  I guess maybe I sometimes feel as if simply assuming there will be a cure is a form of denial in that if you just believe Rett Syndrome will go away someday, then you don't have to feel as worried about it right now.  But there is no guarantee at this point.  Not even those miraculous words from Dr. Sasha make it a guarantee in my mind because something may still go wrong.  They might discover that it actually can't be cured.  I don't know what will happen and that is why I am so adamant that Lucy be kept healthy, and educated, so either way the question of a cure goes, she will be fine. I still just can't bring myself to say "When there is a cure." I just can't. If there is one someday, and if it works, then I will let myself believe it whole-heartedly.  For now, I will just wait and see.  

Tuesday, July 8, 2014

Summer Freedom

It has crossed my mind many times already this summer what was going on with Lu last summer...a lot and not much of it was good. We were afraid she was having seizures, she started hyperventilating, falling over from sitting, and she lost her remaining hand functioning.  She couldn't chew on her chewlery anymore or even get it up to her mouth, she was losing weight, and coughing and choking when she would agree to open her mouth to try and eat.  She was also falling asleep all of the time, especially at the table and I had to always have the iPad with us to play her music to wake her up and keep her awake, specifically, "I'm Yours" by Jason Mraz would instantly perk her up and put a smile on her face.  I keep thinking about it because she is just doing so, so much better now! We have been trying to figure out the culprit of some daily crying, but that's common and comes and goes and we will figure it's nothing compared to what we were worrying about last year at this time.

We just had three weeks off from therapy and while I always do miss our therapists because luckily they are all great ladies, I didn't miss having appointments all of the time and every day was all ours, we could do whatever we wanted, and/or whatever Lu's mood allowed. I discovered an amazing website, that is just full of super fun ideas for doing all kinds of art with children. Besides the wealth of information, I especially love that the general mood of the site is one that supports very open-ended art, so there is no cookie-cutter end result that generally is boring, and often not all that possible for Lu to complete.  Most of the projects I have looked at are all things that Lu could enjoy with minimal adaptations.  Here is the first activity we tried:

These beautiful works of art were made on watercolor paper with shaving cream and food coloring! It was so much fun, and messy and creative, and Lu did it while in her stander so we were getting some pt in for the day too! Here is a link to this project:

We've been doing some swinging of course! 

And playing Mr. Potato Heads! I helped Lu take this picture with my phone and she was tickled with herself.  Her creation is the doctor! She has gotten more interested in choosing the parts using the pages I made for her Tobii. 

And, I found this little book at Ollie's for .99! In the back there was flash cards to cut out to practice matching the words with the pictures in the book because it is a "picture reader". We have read it a few times and so far Lu has correctly matched the words: tree, sun, house, stairs, and door with the pictures in the book!  We've been doing this activity while cuddling on the couch so it is a difficult position for her to make her usual head movements for yes and no, so I ask her to look at me when she sees which word she thinks matches.  I show her three choices, one at a time, until she looks at me.  When it is not her choice, she has even started closing her eyes so as not to look at me, but when it is her choice, she looks directly into my eyes.  So, we've been getting a little school work done here and there too.

And this last picture is of a travel-sized Hungry Hungry Hippos that I got at Kid to Kid over the weekend.  We haven't played it yet, but it have high hopes for the simple adaptation I added to it so she can easily hit the lever and gulped up the marbles! 

So, we have been doing some fun stuff.  Besides these things, there has been some bike riding, lots of picinic so and a TON of swimming! It's been a good summer so far! 

Wednesday, July 2, 2014

In case you were wondering...

In case you were wondering, if you happen to be in a public place and you encounter a person with a disability, it is not good manners to blatantly stare at them, regardless of your age.  If you notice your child staring rudely, perhaps you could muster up a little courage to parent them, and set an example of how to behave when a person who might be "different" has entered the room. 

In case you were wondering, some acceptable next moves when you notice your child (or yourself) gawking is maybe to just say hi. Maybe ask the person's name, how they are doing...the usual stuff. Children will not learn how to treat others appropriately if their parents and the other adults they look up to do not show them how to.

In case you were wondering, if you happen to encounter a child with a disability out in the community and you notice that they are having some difficulties, again it is not helpful, kind, or polite to just stand oggling  them as if they are an attraction at the zoo. In case you were wondering, it would be absolutely okay to ask if they need anything. Again, and today I feel like I just can't say this enough, if you do not choose to offer any assistance or kind words, the next best thing is to NOT just stare at the child and her poor Momma who is just trying to take her child out to story time at the library without feeling like they are on display. Just go back to what you were doing and discreetly encourage your children to do the same.

In case you were wondering, Lu and I had a tough time at the library today. We haven't made it to story time much lately because she has been crying a lot and when we got there today, on time even, she started to cry. We still went in to get situated and get her Tobii set up because she wasn't doing much more than just fussing a little at first. I thought maybe she would get interested once story time actually began.  Unfortunately, as we waited for the librarian to come in, she just got more and more upset.  She may have felt uncomfortable about the ten or so children and their caretakers who stopped what they were doing as we came in and, you guessed it, just stared at us. I sure did. I made many attempts to engage the children closest to Lu in order to break the tension a little and maybe help Lu to feel better, but nobody would talk to us and not one single parent made any attempt to help. Not one single parent tried to assist their child in interacting with us, and not one single parent discreetly (or otherwise) corrected their child for gawking at us. 

In case you were wondering, it's situations like this that make me not want to leave the house ever. What in the hell is wrong with people? I talk to Lucy all of the time about good and bad ways to treat others.  We talk about all of the differences there are among people in the world and how it is okay and good for people to be different.  And that everybody is different in some way.  Because of past times of people staring we have talked about how rude it is. So, she was already feeling upset about something and then her so-called peers made her feel even more uncomfortable. 

I did my best to smile and stay positive. I did my best to help Lucy calm down and prepare to enjoy story time.  Nothing helped.  We left before the story even began. She cried half of the way home, and then was okay. When we got home I asked her if something hurt and she said no. I asked her if she liked going to story time and she said no.  I asked her if she had been feeling nervous and she said yes. She even seemed a little scared when we got into the elevator, which is unusual because she has ridden in plenty of elevators, including the library's and it has never bothered her.  It seems like a possibility that her anxiety is increasing, which is a very common symptom with Rett Syndrome. 

In case you were wondering, I'm totally pissed, and broken-hearted. It breaks my heart that people can be so stupid to each other.  And it pisses me off.  And it enrages me that Rett Syndrome might be reinforcing the obstacle of anxiety that we already deal with on a mild level.  Isn't it enough that I have to worry that Lu is going to cry whenever we go somewhere without also needing to worry about how others are going to react to her? 

Society is stupid, people are rude and inconsiderate a lot of the time, and home is the safest place to be some days. Yeah, I wish I were a hermit and that it was acceptable to be case you were wondering.

Chad sent this to me one day when I was out getting groceries because she was upset.  This is her standard upset, about to cry face.  This is what she looked like at the library today.  How could people not feel compelled to at least be thoughtful enough to give us a little space and  Let's teach our children kindness, and lead by example.