My Rett Body

I want to start with your shock that I can communicate at all, let alone like a normal person. I assure you that I have used facilitated communication with a number of people over the past fourteen years. It is not just me and my Mom, but one of my best friends, Amy, who has been a friend and confidante for many years, as well as other caregivers and teachers. I don’t know what I would be like without the freedom to express myself. It would have been a difficult life, one that I would have given up on.

 

Carbatrol is Not For Me

November 2, 2011

Much has happened these past two weeks.  I have not been able to write because my body has had a reaction to a medication we decided to try for seizures.  I have never felt good on seizure medication and for many years, over 20 at least, I had about 1 or 2 seizures each month.  But for the past two years, they have been getting stronger and more often, so we talked to my neurologist again who wanted us to try Carbatrol.  It seemed fine at first.  I felt pretty normal.  She had us start on a really small dose and increased it.  Even then I felt pretty good until about week 5.  It was the worst I have felt in many months.  

I got so afraid and had so much breath holding and hyperventilating that I could hardly breathe all day.  I became so angry that I couldn’t be around people.  I was so agitated that I couldn’t sit still.  I felt like I wanted to leave my body, but I couldn’t!  I only peace I had was when I was sleeping.  I couldn’t even urinate.  It stopped that too.  I was afraid to be around people because my arms were swinging and I couldn’t stop chewing or grabbing.  I even remember throwing myself backwards.  It has been horrible for me, my Mom and Gregg.  My Mom tried everything thinking that I was just having some bad Rett days, but then over last weekend, she did some more research on Carbatrol and found out that what was happening to me was all of the side effects of Carbatrol!!  With Rett Syndrome, all the weaknesses I already had were made so much worse by that seizure medication.  

I’m being weaned off of it now and the anti-anxiety medication the Dr gave me to overcome the side effects of Carbatrol.  I have never felt so bad on a medication in my life as I did the past two weeks.  I’m so glad to know that I was not going crazy and that my thoughts about suicide were not me, but another side effect of that drug.  I have always been open about my personal struggles with Rett Syndrome on my blog, and I hope this helps others who are wondering if their daughters are affected by the medications they are on.  My body is very sensitive and I feel overwhelmed that the alternatives to seizure medications is seizures for me.  We have tried everything we have ever been told to do to stop them without drugs, and so far, no luck.  But I am praying along with some other friends, that we will find the answers, because a life feeling like I did, is no life at all.  

Love, Karly

 

My Own Experience

February 28, 2011

I was thinking this weekend of some of the times in my life, especially before I could communicate, and what people misunderstood about me.  I thought it might help if I wrote about it from my memories.  

Me at 1 week old

For the first ten years of my life I had no way to share what I was feeling, thinking or needing.  It is hard for me to remember how painful it was to be misunderstood, but I feel good today so I feel ready to share some of my memories of that time in my life.  I know there are many girls with Rett Syndrome who are experiencing some of the things I did, so I hope if I can share my story that it might help someone. 

I wasn’t able to tell anyone that I was hurting or that my tears were grief, or terrifying fear.  I haven’t had much hurt that I can’t share in the last 15 years, but before the keyboard I couldn’t say anything to respond to people’s comments about my intellect, my body, my vision, my ability to understand their words or that I could read. So I understand many of the girls’ pain and tears.  I remember the doctor telling my mom that babies don’t get headaches, while I was having terrible headaches.  I remember them telling my mom that I was having absence seizures when I was just staring into space because I couldn’t stand someone being so close to me.  

I doubt that most people think about what it’s like to need to urinate and you can’t tell someone you need to go to the bathroom.  I am not able to hold it long enough to get to the toilet, because I cannot walk there myself, so I wear diapers. It’s really embarrassing to urinate in a room full of people even when they can’t tell I am going.  I have to try and calm myself enough so I can do it in front of them.  Sometimes I stare off into space so I can create some privacy for myself.  That’s not a seizure.  

At 9 months old I cried a lot. Leah was very patient with me.

If people assumed I was not intelligent, they said some really awful things right in front of me.  Many of my memories of going to doctors and therapy visits are painful to remember.  Sometimes they would talk about me in front of me, saying whatever they wanted to say to my parents and then turn to me and talk baby talk and speak LOUD. If someone thinks you are profoundly mentally impaired they don’t worry about what they say in front of you.  They don’t worry if your feelings are hurt.  They don’t worry that they might be completely wrong.  

I was so uncomfortable in this seat that was created for me but I couldn't tell anyone. I cried in it

It makes me feel so amazed today how much different I feel just knowing that more people believe in me and that I don’t need to try and prove everyday, in a body that refuses to function right, that I am in here and that I feel everything very strongly.  That I see them and my intellect is as good as theirs.  I can remember feeling terrified that the best day I could have is if I wasn’t in pain, for the rest of my life.  It was terrifying.  It was a life that wasn’t worth living. 

I cried so much as a young girl for many reasons.  One of them was because of terrible  headaches. They are some of my earliest memories before I was one year old.  It hurt so bad because my doctor was telling my Mom that I couldn’t have headaches because I was a baby.  She didn’t know how to help me.  I would hold my hands up by my head and scream.  She started taking me to a chiropractor before I was one year old to see if they could help.  One of the things the medical doctors said was my head was small, but because we didn’t know about Rett yet, we didn’t know that was part of it. The Chiro worked on my head a lot and it helped relieve my pain.  They were very helpful to me. 

Another reason I cried was fear.  I was so afraid.  I knew that something wasn’t right in my body because I tried so hard to pick things up, and feed myself or say words, and I couldn’t.  It got worse when I was old enough to see other kids younger than me who could do those things. I felt terrified inside because I couldn’t find a way out.  

When I was 1 1/2 years old other kids could do what I wasn't able to.

The other one I can talk about is grief. That didn’t come real early for me but by the time I was three years old, I was pretty eager to do things that others were doing around me. But, I couldn’t.  I was so sad.  The only way to relieve my sad feelings was to cry.  Since I couldn’t talk about them and teachers and therapists thought I was so impaired they didn’t offer me hope, I saw a life of grief before me.  It is hard to handle those feelings at such a young age.  My Mom and family believed in me but didn’t know what I was capable of.  The messages they were given by the professionals were not hopeful.  My Mom faced much grief and pain herself.  She loved me so much and tried so hard to give me a loving home with a happy life.  It helped me so much to know that she believed.  I feel so much better now that I know there is so much more to life than what we see and experience here. But before I knew about spiritual things I didn’t care if I lived.  

It has been hard to remember these things today, so I am stopping now.  I hope your girls and others who are non-verbal are helped by my story today.

 Love, Karly

 Anger , It’s not Me

Next to the lift bridge in our river town. The river is so relaxing to me. It is frozen now.

January 6, 2010

I have not written much lately.  I have not been feeling good, but today I woke up feeling great.  I have decided to write about my experience last week, because it was a difficult week.  I was feeling things I never had before. It was very difficult for me and my family and caregivers.

 I don’t understand exactly what happened, but since I have always been honest about my Rett symptoms, I decided to write it for you.  I hope I never these things that way again.  I felt so much anger in my body. It wasn’t in my mind, it was just in my body.  I am trying to think of how to explain it to you, because I have felt anger as an emotion before, but this was very different.  I felt completely out of control.  I tried to throw myself back and it didn’t seem like I felt pain.  I am tall, so it was really hard for my Mom, who is much shorter than me, to help me walk or even sit next to me.  While I was doing these things, I felt so scared because it wasn’t me.  It wasn’t who I usually am.  I am very content and gentle most of the time.  I would never hurt someone.  It felt like I had no control of my body.  I was sweating which is very unusual for me.  I typically am very cold.  My body smelled funny, even to me.  I couldn’t sleep most nights.  It was painful to be inside of me.

 I found that if we got out and walked at the place I go with my walker in the cold months that it helped relieve some of my feelings of anger, but I couldn’t get rid of them completely.  The past two days have been very different, so I am glad for that.  I hope this might help you understand if you know of a Rett girl who is acting very aggressive, that it may not be anything she is actually feeling inside.  I don’t know why it happened; we weren’t doing anything different than usual.  No new medications or supplements or diet changes.  It was very weird.  I feel great today, except I didn’t sleep at all last night, but I feel content.

Love, Karly

How Acupuncture Helps Me

September 24. 2009

Beau and I relax together

Beau and I relax together

I just returned from my acupuncture appointment.  I feel so calm.  I’m not hyperventilating and I am not holding my breath.  I love how I feel.  If I felt this good all the time, I would be so happy. 

 I have been going to acupuncture appointments weekly for almost a year.  It has helped my mind the most.  I feel so relaxed most of the time, when I have the needles in me.  It helps my thoughts relax.  They are often very active and I have a hard time focusing, but after acupuncture, I really slow down.  For me, that gives me the chance to feel so content.  It feels like I’m in a different body, one that is not struggling with so many movements and breathing issues.  I love going to get acupuncture every week. It has changed how I feel.

 People ask me how I sit still because I usually am so active, that I rarely sit quietly.  I’m always moving.  There are times in my acupuncture appointment that I am restless, but usually I am very calm.  Sometimes I sit up then lay back down, but I rarely have any breathing issues while I have my needles in.  But today I didn’t even sit up for 40 minutes.  I didn’t even want to sit up after they got the needles out.  Most of the time, I have about 25 needles in.  Sometimes they fall out from my movement, but overall I feel so much better afterwards. 

 I am glad we discovered it for me. When I first started with acupuncture, I was really hurting.  My body had so many hot spots, and then freezing cold areas at the same time.  I was restless.  My stomach was hurting.  I couldn’t sleep well.  I feel warm most of the time now.  Last year my feet could be so cold they were blue.  Or one of them would be really cold and the other hot. One of my ears could be freezing and the other one bright red from heat.  It was miserable, but that is gone.

 I thought this might be helpful to others who are looking for ideas for ways to help their Rett daughters. 

Love, Karly

My View from My Eyes

August 23, 2009

My Eyes From my View

August 21, 2009

Last week, I had a doctor appointment to see my eye doctor.  I have seen him since I was a baby. I got my first pair of glasses when I was 8 months old.  During this visit we talked about how people who have neurological disorders may see the world differently than others who don’t struggle with how their brain receives visual information.  My doctor told me that he has made some assumptions about what people with neurological challenges see, but he has not had much input from someone who may be able to share their experiences in detail.  He asked if I could write it for him, so I thought it would be interesting to put it on my blog, since other girls may experience the same thing.  I am really myopic, so my clear vision is within ten inches of my face. 

I cannot wear eyeglasses for two reasons; one is because they feel so strange and irritating on my face.  I started wearing them as a baby.  I didn’t have the coordination to remove them when I was very little, so I couldn’t get them off. But now, on most days, if someone puts glasses on my face, I can’t get them off fast enough. The second is because I can’t handle what happens in my brain when I wear them. Recently I was able to wear sunglasses for about 20 minutes, but they didn’t correct my vision.  It felt good to not have the sun be so bright, but they irritated my face. 

 I wore eyeglasses until I was five. I couldn’t see any better with them on, than I could with them off.  I hated the way they felt, but I couldn’t remove them until I got a little older.  I took them off and chewed on them so they always had chew marks on the glass.  I lost many pair because they got dropped and my parents didn’t see them fall.  The funniest time was when I was about three.  I was in the garden with my mom in my wheelchair.  It was by the pond and there were ducks playing in the pond.  I had dropped my glasses and it wasn’t until my Mom saw the ducks playing with something that she realized it was my glasses.  They took them into the pond, and that was the end of them!

 My doctor said he has made some conclusions about how people with neurological disorders handle information they receive from their eyes.  He has assumed that for many people they can handle information if they don’t look directly at something, but they see it out of their side vision.  It is true for me. If I look directly at something it is only briefly, and only on days I am able to do it.  It is physically painful to be forced to look at something directly in front of me.  I am better able to handle it if it is on the side of me.  I often move my head back and forth in order to not get too much stress from looking directly at it.  It is hardest with people.  They often think I am not paying attention if I don’t look directly at them.  I remember many teachers and therapists insisting that if I didn’t look into their eyes, that I would not be paying attention.  Nothing could be farther from the truth.  I can handle most situations better if I am not forced to look at something. I can see much better and my brain is not stressed if I can use my side vision. There is something inside me that wants to run away when I am forced to look at someone who is inches from my face.  I am sure that many other girls with Rett struggle with this too.  If I look directly at someone it is because I am able to at that moment. But if I’m not able to do that, don’t assume I’m ignoring you.  I am very aware of everything that is happening around me.  If I am fiddling with something it helps to calm my brain.  I can do both.  I don’t need to be forced to look in order to understand.

 My eye doctor said he had some ideas about how some people with neurological disorders process information.  He described looking directly at something is like sand being poured through a funnel.  He said if it is poured slowly it goes through the hole, but if it is poured too fast it gets blocked. He is assuming that looking directly at something is like sand being poured too fast into the funnel. We are not able to handle that much information coming into our brains, but if we use our side vision the information is like sand that is poured slowly.  It comes to our brains slower, and we can handle it better. It is a good description for me. 

 Our world is so full of interesting things to look at.  The trouble is most of us are expected to be thrilled with lots of activity. To me it often gets overwhelming when there is a lot going on.  I can calm myself sometimes by playing with a fiddler.  Today I am able to focus if I have a fork in my hand.  It makes my brain feel relaxed.

I went to a dance recently with some friends.  It was very loud and there were lots of people.  One of the men was in my face a lot. I couldn’t tell him to back off, and he was just being friendly, but I would not have chosen for him to be that close.  It was a very overwhelming environment, but I could handle it that day. There were a lot of lights, which distract me.

 I read something this morning with my Mom that Carly Fleishmann wrote. It was about how she sees things. She says that when she looks directly at someone, she sees a thousand pictures.  I think that’s a good description about how my brain sees things too, if they are right in front of me.

 Love, Karly

 I AM STRESSED OUT

June 16, 2009

I have had a very stressful week.  Some people say its anxiety.  I don’t know what to call it, but I am so eager to have it stop.  Since it is still happening, I thought it would be important to write about it.  I have never felt this bad for this long.  My Mom has tried everything to help me calm down, but I am hardly any better than yesterday.  I can’t stand this feeling, because I am not myself.

 What others see me doing: I am hyperventilating until I black out, I then flail my arms and legs trying to catch my breath.  I hyperventilate most of the time when I’m awake, I am sweating, my mouth tastes funny, I can’t feed my self, even when I’m hungry.  I’m really thirsty from all the breath holding, but I can’t drink easily on my own.  I need help to eat and drink, which I usually do on my own.  I have not slept well for many days, and when I do, I wake up easily.  I hear everything that’s going on in the house.

 I feel overwhelmed by things that don’t usually bother me.  My thoughts keep racing around in my head.  They go over and over, about things I don’t want to think about. I am not clear about my thoughts.  I think about things I don’t normally think about.  I think about things that are normally not a problem.  I can’t stop my thoughts so I can rest.  \If I give my thoughts freedom, they feel very scary.  I can’t stop from thinking about scary things.  I feel overwhelmed, when it is not something that is real, but I have a hard time convincing my brain of that.

 I haven’t been able to breathe normal for many days.  I breathe normal for 1 minute at a time then I start hyperventilating again.  Through most of this I have a smile on my face, but I’m not smiling in my heart.  I don’t feel sad like I did on Sunday, but I feel overwhelmed.  We are going to get an acupuncture done now, and it usually helps me calm down right away. I can write more later.

 Love, Karly

 PHYSICAL PAIN IN MY BODY

May 13, 2009

 I am feeling really good today, but for almost two weeks I had so much pain in my back.  I thought it might help my other Rett friends, if I shared what happened to me during the two weeks I had so much trouble.  It caused me so many symptoms that it was hard for the Doctors and my Mom to figure out what was really going on.  I have a hard time communicating when I am in pain.  It makes my body so sick. 

 It was about two weeks ago when I almost fell off the Doctors table.  It didn’t seem all that dramatic at the time to others. The lower half of my body twisted funny and my legs slipped off the table.  My Mom was right there and helped me get back on.  I felt a muscle get pulled in my back when it happened.  It was just under my rib cage and down to my lower back.  It wasn’t something I shared with my Mom right away because it didn’t seem that big of a deal.  My Mom noticed later in the day that I was shaking a lot, and I felt so cold when she touched me.  I felt really cold to her.  I had five layers on me and a blanket and yet I was freezing.  My Mom gave me some Advil and I went to sleep relieved from my back pain.  I didn’t know yet that all of my trouble was coming from my back.  I couldn’t sit straight because of the pain, so my hip started to hurt.  I couldn’t stretch as usual so the rest of my body, including my legs, were really stiff.  My Mom noticed that my hands were clenched into a fist and I couldn’t type.  We went to the acupuncturist because I told her I had pain by yes and no questions.  I continued to take Advil which caused my stomach to get upset.  I started having more seizures which of course gave me headaches which needed more pain medication.  I felt awful.  We went to the neurologist, the medical doctor, my massage therapist, my acupuncturist and my chiropractor trying to figure out how to help me.  The blood tests and the urine tests and the throat culture were all normal. 

 I tried to type but it was hard for my hands to be unclenched and my thoughts were all confused because I was so tired from the seizures.  I know that this is something I have experienced in the past and I’m sure other Rett girls have similar times, so I thought it might help others to talk about what can happen to my body from something as simple as a sore back.  It caused so much other trouble for me. I was so tired from the struggle it was hard for me to walk and get transferred.  I feel very sad when I am in pain because it is so hard to separate what is actually happening in my body.  I can’t explain it easily when I’m hurting, so my Mom has to guess a lot and it is stressful for both of us.

Love,  Karly

 

I’M SMILING, BUT I’M NOT HAPPY

April 19, 2009  

I want to talk about how I’m feeling.  I’m so tired, but my body is not sleeping. I am not happy, but my face is smiling.  I’m ready to sleep but it won’t happen.  I want to drink but I can’t.  I’m hungry, but I can’t feed myself.  I try to swallow and I feel like gagging. I am not able to think clearly, but I have something to share.  It is Rett.

 

I have not felt normal for over ten days.  I have not been sick, but my body doesn’t feel right.  I know other Rett girls have times like this, because I am smiling people who don’t know me well think I’m happy.  For me its’ involuntary.  I am content, but I’m not happy. The smile betrays me.  There are many times when my smile is real, but not when I’m like this.  If I give you a picture, it may help you understand.

 

With my horse Beau, there is no good way to figure out what he is thinking, because we cannot get into his thoughts.  So we can only go on what his body language is telling us.  My Mom and I are taking time with Beau and learning from experts how to read horses.  There is so much to learn.  It’s the only way we have of understanding them. He tells us a lot by a look, how he stands, what he’s doing with his head, what his tail is doing, if he’s being respectful of us as leaders, or if he’s afraid or curious.

 

If one day, all those signals become inaccurate, it would be very difficult to understand him, and almost impossible to work together.  We wouldn’t be on the same page.  Since people rely on our body language and facial expressions and behavior to understand each other too, when that changes through no fault of our own, we are very misunderstood.  For those of us who are non-verbal and cannot explain what is happening in our bodies, we become lonely.  I can’t think of a better word.  It doesn’t feel like me inside. I have experienced this before, so I know it will go away, but when it first happened to me, it was very frightening.  I couldn’t tell anyone. My Mom knew I wasn’t myself, but without my explanation, it is difficult to understand. 

 

It seems that Rett affects so many parts of who we are, including our mannerisms and our brains.

Karly

EVERYTHING SEEMS HARD

 April 16, 2009 

I have had a very difficult two weeks.  Last week I was so hyper that I couldn’t focus on writing much.  I was in constant movement and chewing everything I could reach.  It was so frustrating for me and my Mom. I went through sixty bandanas everyday.  I would soak them with my saliva.  It was so gross to me and I got everything wet. If I tried to stop chewing, it only increased my need to chew. I didn’t hold my breath, but I hyperventilated a lot.  The only good thing was I slept well every night.

 

I thought it would be good to share this, because I know that I have been judged throughout my life because I chew on objects.  It is something babies do, so people assume that those of us who cannot control our actions and do things that young children do, are low in intelligence. It causes me a lot of stress sometimes.  I don’t want to chew or drool.  It is something that happens because of Rett, not because I’m not intelligent. 

 

I have stayed awake most of last night, trying to think of what I could say to help my other Rett friends who struggle with the same thing.  What I decided was to be honest about my own struggle with the hope that you will be forgiving of the mannerisms of Rett that we do not have control over, and always assume we are intelligent.

 

The more you focus on what isn’t working, the more stress it causes.  Sometimes I just need to get outside and breathe the fresh air.  It helps my mind refocus and relax.  When I am chewing it is because my body is so stressed, I can’t relax.

 

 It is a beautiful day here.  I am sitting on a new glider rocker with my Mom, on our front patio.  I will add a picture when we get a good one.

 

Love, Karly

I AM MOVING AND I CAN’T STOP

March 31, 2009

Today, I am having a busy day.  Not with appointments and fun things to do, but with my body.  It’s very busy.  I am drumming with my left hand and chewing with my right, and doing lots of heavy breathing.  I don’t like to be like this.  It takes so much energy out of me.  It helps when I can type because for me, much of my movements come from having so much to say and struggling to get understood.  If my Mom or friend Amy is not here for me to type, I get really stressed.  Before I could type with fc, I had a lot of stress.  It never had a way to get released. 

Many people misundestand my movements.  They think I’m excited or happy, and while I may be sometimes, my movements are not intentional.  I don’t like to be this busy. I have so many things I want to do, but if I use up my energy hyperventilating or drumming and chewing, it’s gets very frustrating. 

I have been this way as long as I can remember.  I remember starting to breathe heavy when I was four.  It felt scary at the time because I couldn’t control it.  I have looked at my moving fingers since I was eight months old.  I can’t remember when the drumming started but it has destroyed many things.  I drum until I fall asleep somedays.  It doesn’t help to have people focus on it.  I can’t control it and if people pressure me, I do it more.  It’s not easy to be moving all day long when there are so many more fun things to do.  I am eager to write today and already since starting this blog, my body is calmer.  

Love, Karly 

 

MY ONE YEAR ANNIVERSARY

March 26, 2009

Today, it is one year since I wrote my first blog.  It is 11:16 in the morning.  I am sitting on the couch with my Mom and I thought it would be fun to share this day on My Rett Body.  I have had 26,794 people visit my site in the past year as of this moment. 

There have been so many special days that I have missed in my life because of Rett Syndrome.  But, this is one day I am celebrating because of Rett Syndrome.  I would likely not have a blogpage, if I didn’t have Rett.  I probably wouldn’t have that much to say to interest people who will likely never meet me.  But because I am able to share some of my Rett life with others, I continue to write. I am so honored by your support and care, and to all of you who have written to me this past year, I say thanks.  It has made my life a better place to be.

My friend, Elizabeth, who has Rett, was visiting at my house yesterday.  We have an idea of another subject to write about.  We will be emailing it to each other, until it is ready to post.

Love, Karly

 

 

WHAT HAPPENS WHEN I EXERCISE

March 11, 2009

 

Today I walked inside a building where a lot of people who are old live.  It is beautiful, so I am glad we can go there.  It is so cold outside today, it hurts to breathe, but inside it is sunny and beautiful.  I am not able to walk without full support.  I have a walker that is big, for me to use.  It gives me enough support around my chest that I can walk with little assistance.  I have never walked by myself my entire life.  This is the closest I will come to walking independently.  My physical therapist was with us so she could check to see if my walker was adjusted right.  I was able to be in it for about 25 minutes. 

 

I am exhausted.  It takes a lot of energy for me to walk.  I have to think very hard to keep my feet moving.  My hands are always fiddling with something, and today I was also busy chewing.  It gives me some freedom to be able to walk without someone’s arms wrapped around me.  My back and hips feel so much better when I can walk.  I need lots of help to do it, so I’m not able to walk as much as I would like to right now. My walker is heavy for my Mom to carry and set up, so we have to do it with two people.  In the summer I love to walk outside.  It is so nice to feel the sun while I’m walking.  

 

The other thing I love to do that feels great for my body, is riding horses.  It feels like walking to me.  It helps my hips keep from locking up.  It hurts at first, but once I get use to it, I love it.  It feels like I’m flying.  It also makes me feel so content I almost fall asleep sometimes.  It is so fun for me to walk and ride horses on the same day.  Sometimes that happens.  I’m helped the most by walking and horseback riding.

 

 The second thing that helps me so much is standing everyday.  I can do that at home, and I usually stand for about an hour in the morning everyday.  I listen to a book or a sermon or sometimes we are able to type while I am standing in my stander.  I love to be in the sun, so we have my stander in our living room.  It is good to be up, I hate sitting all the time.  If I was able to walk everyday, I would, because it gives me joy to be moving. It helps me sleep better too. 

Love, Karly

 

I’M TIRED AND I CAN’T WAKE UP

March 6, 2009

I am feeling alert today, but for the past few days I have been so sleepy.  If I could I would sleep all day.  I went to bed at 6 on a couple of nights, on the other days I took some naps during the day.  When I was younger, I was rarely sleepy. I would usually be hyper instead.  In other blogs I have talked about being awake for days and not being able to sleep.  I never know when it’s going to happen, but I hate the way I feel when I am either hyper or so sleepy I can’t function.  I had a headache this week too.  It really hurt somedays, so on those days I am more sleepy.  It is not easy to type those days.  It comes with a great struggle.  I am not eager to do much, but I want to have activity.  I hate to exist. 

I am going to my writing class today.  I have an opening reception at a local art gallery, that is showing the works of adults with disabilities in our community on Sunday.  I will post a picture if we can get one of the event.  I am excited because my music will be performed during the opening reception. I have entered three pieces of art, a painting a photograph of me and Beau, and one of my poems.  I have been talking to the camp director about details for the four day camp this summer.  It sounds like it might work. They are very eager to have me come. The theme is Molded for a Purpose.  I will share more later.

Love, Karly

SOMETHING FOR MY EYES TO FOCUS ON

February 27, 2009

I have very poor eyesight.  It has limited me in many ways, but it’s all I’ve ever known.  I have not been able to stand having glasses on my face since I was five.  I wore them as a baby, but they didn’t make me see much better than I do now.  I have been trying to find a way to explain how my eyes see.  I don’t see details unless I am very close.  I have tried to get some answers from my eye Dr.  He explained to my Mom that my brain probably doesn’t see better with glasses because it is not only my eyes that have the problem, it’s how my brain responds to what my eyes see.  He thought that trying to force me to wear glasses would be the same as people scratching their fingernails on a chalkboard to me.  It would overwhelm my brain.  I want to say I don’t know if other Rett girls have that problem but I wanted to share it, in case it helps.MY EMOTIONS

 

I have written about my attraction to lights in another entry, but I want to share more about it here.  I have always looked at lights.  It may be something I do because of my poor vision, but I wanted to talk about it in case it is something that other girls experience too.  My Mom remembers me starting to squint at lights when I was a few months old.  I remember looking at lights through my fingers.  I would move my fingers and the light would be dancing through them.  If there are small sparkly lights in the room when it is dark outside, I can’t stop noticing them.  It is distracting but it also calms me.  I have little lights that I look at in our living room when I am trying to calm down.  If the room is dark it’s really comforting to look at the lights.  I know of other Rett women and girls who are attracted to lights too.  The difficult part is not being able to manage it sometimes.  It can be hard for me to focus on typing when the lights distract me.  I hope others don’t struggle with their vision the way I do.  One of my other Rett friends, who can communicate, has limited vision as well. 

Karly

 

February 16, 2009

 I have given a lot of thought about how I experience the world through my emotions.  I don’t know if it’s what typical people experience, but I can share mine.  I have not asked my other Rett friends who communicate specific questions about their emotions, but I know they are very sensitive like I am.  I have very early memories in my life of being aware of the feelings of others.  If they were angry or sad, or fearful, I would be very uneasy.  It is not always possible for me to separate my emotions from the emotions of those close to me.  I have learned how to do this better as I have gotten older. 

 I remember as a young girl, before I could communicate, having very strong reactions when people around me were upset.  When I say that, it doesn’t mean that the person was yelling or crying, but I could sense their feelings, and it affected me.  Since I couldn’t communicate, it was hard for me to process my emotions.  I am sensitive, and I know my other Rett friends who communicate, are as well.  We are very conscious of things happening around us.

I am sure there are others with Rett who are like us. For those who are not communicating, those feelings can become overwhelming.  I remember my Mom feeling very overwhelmed and sad when I was little.  She tried so hard to help me and it was before we knew what I had.  We were talking yesterday about what it was like when I started having seizures at five.  It was so scary for us because it was one more thing that was unexplained.  For those who know their daughters have Rett, you have a better idea of what to expect.  My Mom didn’t.  It was an awful time for her. 

 If there is any advice I can give you, it is not to hide what you are feeling around Rett girls, but to be aware. Your emotions may be something they are very conscious of.

 

 My Mom started talking to me when I was young, and tried to put what she thought I might be feeling into words and said them to me. That sounded like this, “It is very hard to want something so bad and if you ate it, it makes you sick. That can be so frustrating if it looks good. This has dairy in it. It would make your stomach very upset.”  It made me feel so good to know that she understood first of all that I wanted to eat her cereal and said that to me, and second that she realized I had some strong feelings about it, and then acknowledged my intelligence by saying it out loud to me.

 

I send my love to Rett girls everywhere today.

Karly

GETTING PAST MY DISTRACTIONS

February 12, 2009

I have been so eager to write about something for a long time.  It is something I have lived with my entire life.  I am confident that I am not the only Rett girl that experiences this.  Since I was 12 years old, when I was diagnosed with Rett, it was many years of living without meeting another Rett girl, so I had only myself.  It was hard to get a label of Rett for my Mom, but in many ways it gave us comfort.  My Mom always struggled if she was somehow responsible for my disability by neglecting something or overlooking something that was important.   When we got the diganosis it made us realize that in many ways I was not as involved as other girls we met.  However, if my Mom had believed the standard tests, I would not be communicating today. 

I beg of you for all my other silent Rett girlfriends, that you do not allow the opinions of some of the professionals about what your daughters understand about their intelligence to hinder your belief in them.  Yesterday was a perfect example for me.  I do not have any options but to go along with the speech therapists approach with me.  Since she has been a professional for many years, she thinks she knows me.  She is basing it on what she observes. She gets very close to my face and expects me to look in her eyes, and when I glance at her it is proof to her that I am NOW paying attention to her presence. 

I ask you, what would you do??  This was the second time I met her.  She came to my house with the idea that she would help me find a cup that I could drink out of independently.  To have her question me and my ability to communicate after one visit is very hurtful.  I have been using fc with my Mom since I was 9 years old.  Since that time I have used it with about 12 other women.  Some as fluently as I do with my Mom. 

If you have any doubts about a Rett girls intelligence you can do no harm by assuming they understand everything….I mean EVERYTHING that is spoken around them, and to them.  Do not assume that because we are not looking at you or an object ,that we are unaware.  Our brains get overloaded easily and looking directly at someone or an object creates stress in our brains.  I giggle sometimes when I am stressed, not necessarily because it is funny. 

I have been so frustrated by what I am sure are good intentions, but if the professionals don’t get to know me or listen to my Mom before trying to come up with solutions, it wastes all of our time.  I have heard so many times in my life that I should just try harder at some little task. They assume that If I can move the little beads consistently enough that it will help me acoomplish other things.  What they don’t take into account is that some days I can do whatever I want to, but tomorrow it may be impossible.  Not becaue I don’t know how to, but because I can’t make my body work today.  It’s not intellect!  It’s my body.  I get confused by therpaists who don’t understand that.  If I were able to solve that problem I would!  It has caused so much grief to me. 

I say that because it explains why facilitated communciation works for me. It isn’t always easy for me to type.  Somedays I type so slowly.  I stop frequently to chew, or grab something or drum or hold my breath, but other days, like today, I am typing very quickly.  I am inspired to share these expereiences because of what happened yesterday.  It brought back many memories of my life when I was misjudged.  

 If you are verbal and are talking to somone, you can tell by their body language if they believe you, if they are open or they are interested.  The same is true for me.  Too many times I have not been believed.  In my conversations with my Rett friends who can communicate, it is obvious that we have all struggled to be believed.  It only takes one person to start out believing that we are in here.  I know who I am, but if those around me don’t, I am trapped.  I wouldn’t be able to compose my music, try to paint, ride horse.

I really couldn’t imagine my life without my Mom and Dad, Gregg, believing in me.  I am confident that my life’s purpose is to help some open-minded people in this world see us for who we really are, not what some limiting test determines.  I hope that my  other Rett friends who can communicate, will soon be interested in sharing their talents and interests with you. It seems that while our bodies are similiar, our interests and gifts are very different.  We don’t all like to “shop and bowl”, which seem to be the activities that adults with disabilities in this part of the US are offered.  We are as different as everyone else is.  Our physical limitations are just that.  They are not who we are in our hearts.  I hope this helps you believe in your instincts about your friends and daughters with Rett….that they are intelligent, just caught in their bodies. 

Love, Karly

THERAPISTS

February 11, 2009

I had a visit today from a speech pathologist.  One of many painful and sad visits fro speech people in my lifetime.  Each time they act as if they have the answers for my communciation.  Fopr some reason they are eager to point out that my method of communciation is not approved by them.  Of all the therapists I have seen in my life, the speech people are the most hurtful.  It seems to me that if someone finds a way to connect iwth this world there should be a party, not an eagerness to point out any fault they have heard of about the method.  Whats most frustrating to me is how uninformed people are of facilitated communication.  They have “heard something about it”…and they make assumptions.  If someone did that about some of the ridiciulous methods therapists have used on me, it would be revealing.  People seem to point out , they are the experts, and stop their minds.  They come to conclusions and don’t ask the real experts, the ones who actually communciate with it.   People rarely see me as the expert on my communication system. They ask me a couple of questions trying to prove a point they are getting at. 

I remember feeling so lost in elementary shcool.  They offered me so little in ways for me to express myself.  They had determined my functioning level to be at a 14 month, so they didn’t feel the need to help me communciate.  I was just like any child my age inside.

So, what are most people left with when they can’t communicate? Lots of emotions…lots of anger, sadness and loss all bottled up.   Those emotions bring out our behaviors that we cannot control, like chewing and drumming and hyperventilating and breatholding, which only goes on to prove what they already believe. That we are little children, that we can’t control ourselves, that because our eyes don’t look directly at them when they are six inches from our face, that we don’t understand or hear.  Have you ever had somone that close to your face you just met?  It’s rude in most circles.  There is very little I can do when someone decides that’s what they need to do to see how I chew or drink.  If I push them away I have bad behaviors, if I grab for their glasses because they are shiny, I am acting agressive.  I can’t win.  I have little I can do, but to take it.  My Mom and I are really hurt by a lifetime of thoughtless professionals.  I hope you have great ones in your life should you be unfortunate enough to need them.  I’m sure there are incredible ones out there, but for today I have another speech pathologist who doesn’t understand how their conduct affects my actions.  

 Facilitated communication saved my life.  Unless another way of expressing myself is shared with me that allows me the freedom to share all my words, it is of little use to me.  I see the value of having a system that offers me independence, so that I can share my wants and needs.  But to take away the only voice I have ever had is cruel.

Karly

WHAT HAPPENS AT NIGHT

February 5, 2009

I asked my friend Elizabeth who is 27 years old and has Rett Syndrome if she could help me write about why she screams.  She said, “it’s time to get the message out.”   I am excited that Elizabeth and I were able to write about this topic together.  It is a question that was asked by a mother who says it is a common experience of many families. Rett girls wake in the night and are distressed, sometimes they are screaming.  Since I don’t scream, I have asked my friend Elizabeth who still experiences it to this day.  As we were visiting about it we discovered something.

Both of us wake at night and feel as if our bodies are floating.  We can’t feel where we are on our beds.  It sometimes makes us feel dizzy. I don’t scream but I bang my bed with my hand.  It helps me feel where I’m at.  Elizabeth says she gets up on her bed and bounces. She can walk, I cannot with out support, but if I bang on my bed it helps me calm down.  Sometimes she wakes up screaming.  I have just realized that what Elizabeth and I have started to talk about is not what everyone experiences.  I didn’t know that typical people could feel their bodies while being in bed.  Elizabeth and I talked about if our bedding is weighted or heavier, it makes us feel calm.

We both need to have our rooms very dark.  Little lights on stereos, lights on humidifiers, even my monitor lights distract me from relaxing. For Elizabeth, small lights on equipment don’t bother her, but light coming under her closed door does. Our friend in England, who has Rett, says that light distracts her at night, but she feels too isolated with her door shut. I am ok with my door shut. It helps keep my room quieter.  There is a monitor in my room in case I wake up and need someone.

 

 We also talked about how noises are so distracting when we are in our bedrooms trying to sleep.  If there is a radio or TV in another room in the house we can hear it.  For me, if there is also music in my room, it overlaps. I can’t separate the sounds, so they sound like chaos in my head.  Radios and conversations that are overlapping are irritating to me.  If the volume is what a typical person would listen to, it roars in my head. I have an air purifier going in my room which helps block some of the sounds in the house.  We can both hear things that other people can ignore.  For girls like me, busy homes with lots of activity are overwhelming.  When I get into bed at night my brain is on overload.

 

While we were visiting, Elizabeth’s parents asked her how her Select Comfort Bed was working for her.  It seems her best number is 45.  She said a softer bed feels more comfortable to her.  It needs to be a soft mattress with heavier blankets to feel secure.  I also like my mattress to feel softer.  It helps me because my body is bony.  It hurts to have a harder mattress, but I also love to have heavier blankets.  It helps me to feel my body better while I am laying down.

 

Elizabeth says as she’s gotten older she can handle the cold better. It helps her to have warm blankets, but she doesn’t get as chilled now.  I get very cold easily.  I have three layers on top and two layers on bottom when I go to sleep in the winter.  I have four blankets on me and a heater in my room.  It is on low, but it keeps my room from getting too cold. 

 

Karly and Elizabeth

STAYING AWAKE ALL NIGHT

February 1, 2009

I have not slept for two nights and I am exhausted.  My brain is fuzzy, but I sit here with a huge smile on my face.  Not because I am happy.  It is because I cannot control it. I smile at times it is not funny or amusing. I don’t know why, but it is often misread by people.

I remember as a child, before I could communicate, when I would be smiling and giggling, people thought I was so happy.  My Mom would say, “would you like to be this happy?”  I was so hyper, I could not stop moving.  I was not happy.  It was one of those Rett things. 

I thought it might help to share about not sleeping while I am exhausted, because it is real today.  I have not been able to eat or drink on my own for days.  It seems to go with these times.  I hope to sleep tonight.  I usually don’t sleep for two nights in a row, and I don’t rest during the day.  It’s not because I don’t want to.  My brain will not allow me to.  I sit in bed, try to lay down, and I pop back up.  I feel terrible for those who are with me because I know they aren’t sleeping either.  I cross crosswise in my bed from moving and I cannot turn myself around.  I chew sometimes, and get my bandana soaked, and then my mouth gets dry. I hate feeling like this. I’m going to have acupuncture on Monday, which helps me so much. 

My body doesn’t respond well to medications for most things, so I take Melatonin and B6 at bedtime, which usually helps me sleep great.  My Mom has given me meds that for most people affect their breathing so they need to be monitored, but made me so hyper I could fly.  I have had three drugs like that at one time and it got even worse.  I could have jumped out of my skin I was so restless.  I didn’t feel any better.  My body didn’t know what to do with these drugs.  For me medications have not been good.  My friend Elizabeth has tried many medications to help her at night, but she did not do well with them.  Her body couldn’t handle the drugs either.  She felt worse on many of them.

I hope this helps you to know that Rett girls do not want to be awake at night, but our bodies and brains won’t allow sleep.

Karly

GOING TO THE DR

January 30, 2009

It may surprise many of you that those of us who live in the U.S., don’t all live near Dr’s that know anything about Rett.  I was born in 1985, long before most Dr’s knew there was a disorder called Rett Syndrome.  Since it took 12 years of living with Rett before I was diagnosed, we saw so many different Dr’s.  They each had an opinion about me that they shared with my Mom in front of me as though I couldn’t hear.  Much of what they shared was something they never would have if they believed I was capable of understanding them.  It caused a lot of sadness for me and my Mom.  My sister Leah came with to many of those appointments.  It wasn’t fun for her or me, but I was so miserable that my Mom felt she had to keep trying to find answers.  

 For families who can go to Dr’s now that know about Rett, it is a different time than we had.  My Mom says I was a guniea pig for Dr’s.  They need to wake up when they are talking to families in front of the very child they are discussing.  If they believed we understood everything, their comments would be suitable for us to hear.  By assuming a lack of intelligence, they cause grief, and they wonder why the girls are screaming, or hyperventilating or chewing or flapping their hands.  The very actions they use to demonstrate our lack of intelligence. 

I’ve had bad experiences in the presence of Dr’s, so I share these things because I’m sure I’m not the only girl with Rett who has.  I want people to assume intelligence.  It doesn’t hurt anyone to believe the best.  It gives those of us who struggle in our physical bodies, an audience that we don’t have to struggle with.  It helps us to know we are believed in.

Love, Karly

MY EYES, WHAT YOU SEE IS NOT WHO I AM!

December 15, 2008

I want to focus on the apparent lack of interest that girls with Rett seem to show in the world around them. I assure you they are listening to every word. It may not always make sense to them, and they certainly won’t look like they are paying attention, but don’t let that fool you. It is not true that they are unaware. I rarely look directly at anything because I am visually limited. What I do see often overwhelms me. So I don’t look at things like the typical person would. The professionals seem to use how attentive we are with our eyes as an indicator of how much we understand. When I was young, I rarely looked directly at people. It was too much intensity. I think our brains process things very differently than a typical persons. If you are using how attentive our eyes are, as the guide to our intelligence, we will never be able to show you who we are. I have been misjudged many times by people who expect me to look directly at them, when they speak to me, or an object they want me to focus on.

HOLDING MY BREATH  TIL I’M BLUE

December 14, 2008

Somedays I breathe normal for parts of the day, so people are not aware that I have a huge challenge with breatholding. For many people, my movements as I’m holding my breath, are just unusual. What they don’t know is that my brain triggers me to stop breathing, sometimes until I black out. I bend over while I’m holding my breath because I get weak, because I have no oxygen. I am jerking. I hold it until I am blue, sometimes for almost two minutes. I then feel desperate for air and hyperventilate trying to get oxygen. It is probably the most challenging part of my life. Somedays I do this from the time I wake up, until the time I fall alseep. It is so frustrating to me, because it makes me appear unapproachable. It looks scary to other people. In fact, they remind me I’m not breathing, by saying things like “Karly, you need to breathe”! It increases my anxiety. I am very aware that I am not breathing! It is something I have no control over. As I write this, I am having a difficult day, holding my breath and hyperventilating. I rarely do it when I’m outside, around horses, in water, standing in my stander, and walking in my gait trainer,  and never when I’m sleeping. It does not hurt, unless I bang my arm or leg when I’m hyperventilating. It is just difficult, because I cannot manage it.

MY BUSY HANDS

December 12, 2008

One of the things I do is what we call “fiddling”. I started looking at my hands when I was 8 months old. That’s what my Mom tells me. I remember playing with light through my fingers. I still squint at lights and  get distracted by shiny things, but that’s another story.

My hands are always busy. My left hand slaps my leg when I’m awake. Sometimes it drums on things. People often comment that I have great rhythm. It sounds like a horse running to me. My Mom calls it “tickling” everything.

My right hand chews on my bandana. I put my bandana in my mouth and chew on it using my right hand. I know my hands are different than many Rett girls. I don’t have them stuck together doing the same thing. Mine are separate and busy independently.

Throughout my life I’ve had objects that I fiddle with. It’s NOT because I find them interesting. It is something I have a hard time controlling. When I was little I had a Fisher Price toy that I would spin for as long as it was in front of me. It had a clicker, a dial and a mirror, all things that I am attracted to. I don’t mean in a good way. I didn’t want to spin that toy! I wanted to do other things, but I couldn’t stop myself. When I was finally able to communicate at 9 years old, my Mom asked me if I like that toy. I told her NO! I wanted to do other things, but I couldn’t stop myself. I needed her to help me stop. However, if I was having a hard day, I needed that toy to calm down, but only for a limited time. It was overwhelming to not be in control of my bodies actions.

I am still a fiddler. I have removed the finish from our dining room table when my fingers drum on it. My Mom says it looks like “firewood”. We just keep things near me that I can fiddle with, if I need to now. I do it while I am listening to my books on CD.  At least my mind is elsewhere, listening to my books.

I have counted how many times I have stopped breathing while writing about my hands. It was 8 times.

Karly

MY HANDS: THEY HAVE A MIND OF THEIR OWN

December 16, 2008

One of the things I remember from being young and having therapists, drs and teachers do when they were trying to figure me out, was to have my hands do something. They were trying to figure out if I could follow directions, or if I understood what they wanted me to do. They had objects that were big and then smaller, and had me put them somewhere. Most of the time it wouldn’t happen right. I would try so hard to show them that I did understand,  but I had no way to do that.  My hands have a mind of their own!

They continued to try to determine my intellect by continually asking me to do things I could not do. I could not stand up and walk to show them, I could not speak to tell them, I could not pick up items to follow their instructions, so I was stuck with a label that is not who I am. My hands often don’t do what I want them to do. If I see something I am interested in and I want to pick it up and handle it carefully, I am not able to do it. It often gets tossed or fiddled with, or chewed on. I can’t explain why, but I can tell you it causes me a great deal of stress. I can have a thought in my mind of how I want to handle an object, and my hands don’t cooperate. I have always been like this. However, if someone takes my hand and without forcing me, but gently holds my hand, I can do things with purpose. I can paint, I can type very fast, I can feed myself without help most days.

I don’t want to damage things. I feel so much stress when my hands are busy and drumming , because I don’t want to do it. Music calms me, so that’s something I have a lot of. Dim lights help, twinkling lights like the ones on our Christmas tree, relax me. I have a water bubbler. It also helps.

I am eager to tell you that what my hands do are not a reflection of my intelligence. I know that many people are frustrated by this. I remember having many assesments in my life, and some days I could respond appropriately and the next time, I couldn’t. They thought I was non-compliant! I wanted to scream. I am in here! You are limiting me! I am capable.

It has gotten better as I’ve gotten older. I have a little more control. I can sit at a table with my family and not grab things because they are shiny. I work hard at it. I am not as stressed if the people I am with believe in me, and know who I am. It makes me relax more.

Karly

SPARKLY THINGS CAPTURE MY EYES

December 17, 2008

I have been talking to another young woman with Rett Sydnrome in England. She uses the same communication method I do, and we have been sharing our thoughts with each other. She and I both do something that I thought may be helpful to others if I shared it.

I have always been attracted to lights. If there is sun coming into the window I squint my eyes and stare at it. If there are twinkly lights, I’m really distracted by them . I have struggled at being able to focus on something else if there are shiny things to distract my eyes. For example, when I was young, the teachers would use clipboards to hold papers for me. I would get distracted by the shiny clip. It is hard to pull my eyes away. If there is a spiral notebook, I notice the shiny spiral. It is similar to the toy I used to spin as a small child, but couldn’t stop because it had a mirror on it, and would sparke as it spun by my eyes.

My friend in England describes it as she “gawps at lights”. It is usually calming to my brain to do this. That’s why I love sunny days. I love the big windows in our living room where the sun comes in. I have a red string of Christmas lights in my bedroom that we turn on sometimes in the morning when it is still dark outside.

Karly

ANXIETY AND FRUSTRATION: LIVING WITH RETT

December 19, 2008

When I recall what I felt as a young girl, frustration was really high for me. I remember feeling very angry that my young body was feeling so much pain. I was having headaches and stomaches. I couldn’t tell anyone what was happening inside me. So the frustration was really high.

I remember when my cousin came to visit when I was four, and he was about 1 year. I remember feeling so much sadness as I watched him crawling around and walking and moving easily, when all I could do was sit. I cried the entire three days they were visiting, whenever he was in the room. I felt so sad. I was very aware that he was able to do things that I couldn’t.

Anxiety didn’t start until I was around ten. It was when I started to hold my breath, and I realized my body was going to do what it wanted, even if it scared me, and I started to feel a lot of anxiety. If I feel anxious  now, it is usually because I am aware of people around me that are ignorant, and believe I am not aware of their words, or actions or stares that make me uncomfortable. I can usually calm myself down now, by listening to music or a book or dimming the lights. It has gotten better as I’ve gotten older.

I remember my Mom talking with me when I was 8 years old. She started to assume I understood everything, and spoke to me like she would any other 8 year old. It gave me so much hope. I realized she was seeing who I really was, and acknowledged my feelings of grief and sadness, and my frustattion at not being able to accomplish things easily. I remember looking right at her, trying to reassure her that I understood what she was saying. That was before we had a way for me to communciate back to her. It made so much difference in my spirit to know that I was heard. And that is when my life began to change. I got healthier. I had fewer headaches, my stomach didn’t hurt as often, and I started to gain weight. I was so tiny, for so many years, even though I ate a lot of food.

If I could share something with other Rett parents, it would be to assume your daughters understand everything. They are aware of what is being said about them. I know many people who talk around me, as if I’m not in the room. It really hurts sometimes. It doesn’t happen with my immediate family, but Drs, therapists, specialists, teachers and friends have acted so disrespectful to me, by saying things they never would in my presence, if they really believed I understood every word.

You will do no harm by assuming your daughters understand you. You can do great harm to their will to live, by giving them so little to accomplish, through the dull and repetitive activities, often given to those of us who cannot easily express ourselves.

Love, Karly

INDEPENDENT EATING

December 23, 2008

I was not able to feed myself or help myself drink independently until I was 9 years old. I remember feeling frustrated because I had to depend on others to help me eat. I started to push my Mom’s hands away when I was 9 years old. I wanted to feed myself so bad. I couldn’t hold onto the spoon for any amount of time, so I would drop it after each bite. When I started to be able to feed myself, it was so challenging, but it felt so good when I was able to do it. I am still not able to feed myself independently everyday, but on the days I am having trouble, someone helps me eat. It has helped me feel less dependent. I need to eat four times a day to feel good. I can’t put my cup down without tipping it over, so I need a cup with a lid or a spout. I am working hard at using a sports bottle. I want to have a bottle to use that looks like everyone elses. For me, it’s been hard to be noticed when I am eating in public. I can’t stay neat when I feed myself. Even if I try hard, I have food on my face. My Mom reassures me. I have started to want to eat in private, when I am away from home. 

I am eager to share with you that other girls may not have the ability to feed themselves independently, but I hope they are looked upon as having a physical challenge, and not an intellectual one. It is hard to be that dependent and allow others to provide our food. I know it is hard for my family to always have to prepare food for me. I am on a gluten free, dairy free diet. It has helped me so much with my stomach problems and sinus problems, as well as headaches. I feel so much better than when I was eating gluten. I have been off it for over a year. My allergies to dust have almost completely gone away. I am not on medication for it. I feel so much better.

Karly

I’M CHEWING AND I CAN’T STOP

I have been doing something for the past few days that I can’t stop. I want to share this while it’s happening so I can describe it better. I started chewing on things, when I was very young, but it increased since I was ten. I can’t stop doing it even if I want to. I chew on bandanas that I wear around my neck. If I don’t have them, I chew on my clothes. My jaw is sore from chewing so much. I do it from when I wake up, until I get too tired to do it anymore in the evening.

I have something near me that I can chew on when I wake up in the morning. It is a stuffed Miss Piggy. As I write this I am stopping every few seconds to chew on my bandana. It has been a difficult three days.  I go through about 60 bandanas  a day. I have counted them the last few days. When I chew so much, I get dehydrated, because of my bandanas drying out my saliva.  I think I’ve met other Rett girls that chew on their hand or wrists. It helps me to chew on something I can feel in my mouth. We use a face cream that is put on my face many times a day. My face would be so chapped if I didn’t use it.

So that is the details of my days chewing. It is very frustrating because I can’t control it. I want to go somewhere to relax but I can’t get away from myself. It goes with chewing somedays. I am excited because my sister just came home for Christmas. My family has been getting together to share Christmas. It is a great time for me.

karly

EXPRESSING MY EMOTIONS

December 30, 2008

I have lived for 23 years.  In that time I’ve experienced a huge amount of emotions.  I was born before Drs knew about Rett Syndrome.  I lived in a body that slowly caused me pain and frustration. There were times when I wanted to give up. Since I have never lived in a typical body, I don’t know what other people experience, but I can share about my own life.

I was aware of great feelings even at a young age. I remember feeling very angry when my body wouldn’t allow me to do what other kids my age were doing. I was very fearful also. I wanted to be able to tell my Mom what I was feeling. I wanted to tell her about my headaches. I wanted to tell her it hurt when I peed, (I had bladder infections before I could communicate). I wanted to say how sad I was that my life was so challenging for me and my family. I heard what the specialists were saying and I was furious. I was eager to scream at them. I was so hurt by their beliefs about me.

I want to say also  I felt so much love. I was so grateful for my Mom and sister. I was fortunate to have them for my family. I suppose everyone feels lots of feelings in their lives. What I can’t do is express them like many people do. I can’t talk about them with words. I can’t cry. I can’t run. I can’t express myself easily. It has caused a great deal of physical pain in my life to have emotions I can’t express. I am fortunate that I can type. I know most girls with Rett are not so lucky. I want to have you believe that we feel everything. We just can’t express it. I believe I have seizures when I get too upset, especially angry. I have trouble sleeping when I am sad or excited. I am anxious when something fun is about to happen because I want to feel good for it, but I often to get too excited to enjoy it.

It has also helped me to have my Mom talk out loud, to put words to my emotions. I remember when she first did this for me. I was about 6 years old. I was upset because she was eating something that I kept reaching for. She said to me out loud, “It is hard when you want to have something, and if you ate it, it would make you sick.” It changed how I felt because she acknowledged how it felt for me, and explained why I couldn’t eat it. I felt so much more calm. I hope this helps my Rett friends

Love, Karly

TRYING TO GET MY BODY TO WORK

January 2, 2009

I am having a good day handling my body today, so I decided to write about it. There are many days when even the simplest of things are very hard to do without a great deal of frustration. I have times when I can’t pick up a spoon without effort. I was not able to pick up small objects for most of my life. I remember thereapists wanting me to pick up Cheerios. I could not do it. I could do it easier somedays, but only with my fist. I didn’t have the ability to use my fingers to pick up objects. I feel the effort in my brain. I know how I want to do something, but getting my hands to cooperate is very hard.

I have memories of tyring to show that I understood what I was being asked to do. I couldn’t do it because my hands weren’t able to respond to my wishes. It is very tiring not having my body respond to my brain. I have better days now that I am older. I didn’t understand why my body wasn’t working the way other people thought it should.  I just knew they were waiting for me to “cooperate” or “comply”-that’s another word they used in my presence. 

My body wasn’t working and my words were stuck inside my head. It was a scary time.  I remember crying so much during those years.

Love Karly

CRYING FOR A GOOD REASON

January 2, 2009

I cried for many years as a young girl. My Mom remembers the first six years of my life, being filled with crying. It was so hard on us.  It is funny that I can’t cry now unless I am in great pain, but it was very different in my early years.  I was scared, sad and angry. They tried so hard to help me.  I was lost in my body. 

I have thought since that time about what could have helped me.  I know that many Rett girls cry a  lot when they are young.  I was so aware of so many things, like the Drs opinions and teachers and therapists and family.  I wasn’t detached like people thought I was.  I wasn’t unaware. I heard everything.  Even whispers.  I think if others could imagine what it would be like, to be scared and in physical pain, and to be so limited in your body and unable to speak, you would cry too. 

There were times when I was crying because of my headaches, and other times stomachaches, but other times, I was so sad.

This is what may have comforted me is if the adults in my life knew I understood everything and talked to me like they would have to another child my age.  If they would have known that I was able to understand them, I would have liked to be encouraged to believe in my own life. I would have like to not have so much therapy.  Physical therapy was the most helpful. Speech therapy was depressing.  I would have liked to have more music therapy when I was very young.  Not the kind that helped me stroke the guitar strings, that was silly.  In music therapy if you have trouble getting your hands to cooperate, you do not have a lot of fun.  But I now create music, so it has been helpful.

Love Karly

TWO RETT FEMALES RESPOND TO A CHAOTIC DAY

January 10, 2009

I have had a couple of parents ask me why their daughters who have Rett have such a huge reaction to a busy active day.  I am not the only adult female with Rett who can communicate.  I have met a new friend who has Rett and lives in England. She is 21 and also uses facilitated communication to communicate.  I thought it would help if I asked her to contribute her experience as well.  She has given me permission to share her thoughts here.  I am so excited to include it on my blogpage.  As we are able I will get her input on Rett topics. 

The question about why girls with Rett syndrome get so overwhelmed by busy, active and chaotic days is one I have thought of for a while.  When I was even a baby, I had trouble when there were crowds of people, loud noises startled me, I was overwhelmed by loud music and I cried my heart out.  I couldn’t handle busyness of other children around me.  They create unexpected loud sounds. The trouble was the anxiousness inside me didn’t go away, just because I got in a quiet place.  My friend Ali explains it like this: “If I have a day where we only pootle out, I’m ok but if it’s chaotic and zoo-like and loud, I am jarred, it lot kill my nerves.  I need a dugout for protection.  In my mind I stay excess on edge.  Go to bed but still jarred inside by my day.  There is still stress inside, I’m raw, it hurts.  Do little girl overload, it not kind.  Try to protect from tense people, loud chaotic life as overload kill my nerves, bad life.  I am stronger now I’m older, I cope much more.  I can get fun out of life now.”

It was so difficult to be around crowds of people many days.  If I knew the people it was easier because they were more comforting.  It was very hard for me to be in school when I was young.  I wasn’t believed in so the tension and stress was very hard.  I hated school until I was 14.  I felt so sad.  I wanted to stay home.  When I was 14 I got a wonderful teacher who is my friend until this day.  I think between her acceptance and belief in me, it calmed me down.  It changed my experience around groups of people.

  Now I am able to share my story with groups of people.  I feel anxious, but not overwhelmed.  Like Ali said, I try to have a calm life.  Soothing music really helps me.  Loud music still startles me. I need my bedroom to be completely black at night.  It allows me to shut out distracting lights since they are attractive to me.  I have calming music and an air purifier in my room when I go to sleep at night.  It helps block the noise from the rest of the house.  Fortunately now that I’m an adult our home is quiet.  I love to listen to the water bubbler that we have in our living room. It calms me too. Whenever i can I get outside.  It relaxes my anxiety.  If we are going to church and I know the music is going to be loud, I can prepare myself now.  I anticipate events and get too excited sometimes.  It keeps me from sleeping. 

If I understand Ali right we are similar in that our ability to handle some of the anxiety that comes with Rett has improved with age.  If I was overwhelmed as a little girl, I needed to be separated from the activity, but I can usually handle things now.  I think the best way I can explain it, was my brain was affected by Rett in ways that kept my brain from maturing until I was older.  One of the things that helped me so much was being able to communicate.  I could talk about it, so I wasn’t just a little girl crying but someone who had feelings and fears that I couldn’t handle.  I was able to get it out of me but that wasn’t until I was 9.  My friend Ali discovered facilitated communciation at 5 years.

Love, Karly

THERAPIES THAT HAVE HELPED ME

January 12, 2009

I was 12 years old before we met a Dr that actually knew about Rett syndrome.  Before that they said I had autistic behaviors but couldn’t explain all of my physical challenges.  Before we had my diagnosis we tried many different things.  We saw so many different types of therapist and Drs, and so many weird people.  It was so hard for my Mom before we found other people who were like me.  I was able to get some help from some of the therapies that we tried, and others were just frustrating.

The ones that helped me the most were not from the medical community, but looked on me differently through a holistic view.  I was so sick when I was young.  I had so many allergies.  My body was so frail and tiny.  I weighed 50 pounds until I was 13 years old.  I got sick easily.  My stomach hurt a lot.  I reacted to medications opposite of what I was supposed to.  With seizure medications I had more seizures, not less.  If I get a medication that would normally make someone fall asleep, I get hyper. When I was 13 we discovered a powdered food supplement that changed my life.  I take it to this day once daily.  It is Ultra Clear Plus.  I started growing in height and started gaining weight.  I slept better.  My stomach felt better.  My Mom said it must be fertilizer because I have grown to be 5 feet, 7 inches.  I also see a chiropractor because I have a lot of back and hip pain.  My headaches are so much better.

In November last year, we decided to try acupuncture, because I was having weird symptoms and all my blood tests came back normal.  We decided to try acupuncture to see if it would help me.  I had hot spots on my body and the rest of me was freezing.  I couldn’t sleep sometimes for three days in a row.  I was so hyper it hurt.  I couldn’t relax.  My Mom and I were a little nervous about acupuncture because I can’t sit still for a minute unless I’m sleeping, but we weren’t sure what else to do.  We heard about this woman who is great at acupuncture.  I have gone about 8 times now and have been amazed.  I feel so much clearer in my head.  I feel so relaxed with the needles in me.  I sit quietly and it immediately calms me.  I don’t even feel the needles and I feel completely calm about it now. 

I have my own gait trainer so I walk as much as I can.  We go to a home for elderly people who are able to live independently for me to walk.  It is a beautiful friendly place.  I stand in my stander everyday at home for about an hour.  It helps me get off my butt.

My diet is gluten and dairy free.  I feel so much clearer in my head when I don’t eat gluten.  My mind is clear and my allergies are mostly gone. 

I have music therapy twice a month.  Over the years I have had a few different music therapists, but only one that really made a difference.  My friend Karen Bohnert is still my favorite because she helped me find a way to communicate the songs inside me. 

Love, Karly

 

SENSITIVE IS OUR MIDDLE NAME

January 23, 2009

One of the things Elizabeth and I are sharing is how we respond to many different situations.  As we visit, our experiences are very much alike. One of the things that we experience is variation. Some day’s communication and movements and focus are great.  Others we can hardly function. It is with our age that things have improved somewhat, but we do still experience it. 

 

Our lives are so dependent on others.  It is hard for others to understand who we are inside.  Most people don’t have a way for us to communicate with them, so we have many things happen that we have no control over. Elizabeth and I talked about our emotions and we experience all of them. We both talked about love and how we feel so much love, but it is hard for us to demonstrate it. I wish I could hug people with my arms, but I can’t. Elizabeth says she would like to express love in a physical way too. She does it by sitting close to those she loves, but without facilitated communication she can’t tell people she loves them. I experience the same thing. The only way I can show love, if I can’t type it, is to bump people with my head. I cannot always control how hard I do it so sometimes I hurt people by accident. When Elizabeth feels angry she may scream. She says it’s getting better as she’s getting older.  

 

 Sometimes our frustration may appear to be out of proportion to the situation.  If it is because of something we were looking forward to that ends up not happening, we feel the loss very great.  We have so little that is easy in our lives, so we are very appreciative of things to look forward to.  Elizabeth’s experience at the group home is an example.  She has a DVD player in her room with music that calms her.  Someone decided that Elvis would be a good change. Her DVD player got set to run over and over on Elvis, so since she cannot change it herself, that’s what she was left listening to. 

 

If we are depending on someone who meets our physical needs and they go unmet we feel great anxiety.  I can’t get to the bathroom independently, so if someone doesn’t anticipate my need to get there before I can’t hold it, I have an accident and I feel so embarrassed and frustrated.  Elizabeth describes it like this: “huge let down having little control over needs not being met.”  It isn’t that we have so little control over our emotions but rather little control over our lives. Elizabeth agrees that she has difficulty controlling some of her emotions at times.  We have both experienced a big change as we have gotten older. We have matured as we have aged. If we are disappointed we are better able to cope now.  One of the ways Elizabeth has changed is that she is now able to cry in response to sadness.  I cannot cry in response to sadness, but I hope to someday.  If I am very sad or angry I can have a seizure. I hope this stops too!  If you see a huge reaction to a simple loss, it is because we feel so little control.  I respond to a lot of stress and frustration by hyperventilating.  It is not something I choose to do but something that happens when I get overwhelmed.

 

 Both Elizabeth and I are very sensitive to what we see and hear on TV or movies.  Elizabeth says, “Violence bothers me.”  I think both Elizabeth and I are very sensitive to any act of cruelty or harshness.  Raised voices are very unsettling to us.  We like harmony and peace.  Acts of violence, even if they small to others, are hard for us to tolerate.  We respond by doing what our bodies do when they are stressed.  It can be screaming in Elizabeth’s case, or in my case hyperventilating or interrupted sleep. If we have no way to show our emotions, our bodies will betray us.  They do whatever they do when we get stressed. It cannot be controlled by us.  It is very hard to live with no way to let go of emotions, especially if the only outlet we have is disruptive or irritating to others.

 

Love, Karly, Elizabeth and Friends

RECOVERING FROM A SEIZURE

January 29, 2009

I am writing today while recovering from a seizure.  It seems ot make the most sense to write about it while it’s happening.  I am very tired so this will not be long. 

I want to start by saying, seizures don’t hurt.  The only thing that hurts are the headaches afterwards.  I am very fortunate that I have not fallen during a seizure.  I know of others who have and have hurt themselves.  It makes my body feel tense afterwards because of the tightness during my seizures.  I usually go to the chiropactor everyweek, and that helps.  I missed getting to the acupuncturist last week, and I felt really different.  We’ve been going every week for about 3 months.  It has helped me by clearing my head.  I can think better.  I don’t feel so hyper when I have acupuncture.  I have a seizure every few weeks.  It sometimes takes a day to recover, but it usually happens quickly now. 

I have talked with my neurologist and we decided to have me not take medication for seizures, because I feel worse on them.  I told her I want to feel like me and not have my body struggle with medication.  She agreed. It was my choice.

Karly

I want to talk about how I’m feeling.  I’m so tired, but my body is not sleeping. I am not happy, but my face is smiling.  I’m ready to sleep but it won’t happen.  I want to drink but I can’t.  I’m hungry, but I can’t feed myself.  I try to swallow and I feel like gagging. I am not able to think clearly, but I have something to share.  It is Rett.

 

I have not felt normal for over ten days.  I have not been sick, but my body doesn’t feel right.  I know other Rett girls have times like this, because I am smiling people who don’t know me well think I’m happy.  For me its’ involuntary.  I am content, but I’m not happy. The smile betrays me.  There are many times when my smile is real, but not when I’m like this.  If I give you a picture, it may help you understand.

 

With my horse Beau, there is no good way to figure out what he is thinking, because we cannot get into his thoughts.  So we can only go on what his body language is telling us.  My Mom and I are taking time with Beau and learning from experts how to read horses.  There is so much to learn.  It’s the only way we have of understanding them. He tells us a lot by a look, how he stands, what he’s doing with his head, what his tail is doing, if he’s being respectful of us as leaders, or if he’s afraid or curious.

 

If one day, all those signals become inaccurate, it would be very difficult to understand him, and almost impossible to work together.  We wouldn’t be on the same page.  Since people rely on our body language and facial expressions and behavior to understand each other too, when that changes through no fault of our own, we are very misunderstood.  For those of us who are non-verbal and cannot explain what is happening in our bodies, we become lonely.  I can’t think of a better word.  It doesn’t feel like me inside. I have experienced this before, so I know it will go away, but when it first happened to me, it was very frightening.  I couldn’t tell anyone. My Mom knew I wasn’t myself, but without my explanation, it is difficult to understand. 

 

It seems that Rett affects so many parts of who we are, including our mannerisms and our brains.

Karly

30 Responses so far »

  1. 1

    Kelly said,

    Thank you for sharing with all of us – it helps to understand our sweet little girls a little more!!!

  2. 2

    Sarah Adams said,

    I found this entry fascinating, it sounds so like Alex. I read it to her this morning and asked if what you said was also true for her and she typed’ Yes’. As she has grown older she has looked directly at people much more but when she looks at a film, she often turns her head to one side and appears not to be looking properly, although she is looking sideways. When asked, it appeared necessary in some way to rest her eyes. She flicks her gaze to objects and away again.
    I know she can read but she can’t read if there is a whole page of writing, she can’t get her eyes to track along the line properly. On the computer it helps if the words are triple spaced and she needs lots of contrast. The best has been a purple textured background with white (or yellow) font, triple (or even quadruple) spaced words.
    One thing we have done which has really helped, is to put the subtitles on whenever she watches a DVD. It gives her an auditory and visual input and I’ve been amazed to notice how much I used to miss of the dialogue before we did it!
    Thank you, Karly, I think your new My Rett Body page is a wonderful addition.
    Sarah

  3. 3

    Pam said,

    Thank you for sharing this.

  4. 4

    Kim said,

    Karly, your blog is such a blessing to me and so many others! I know my little girl, Karlie understands but her hands give her so much trouble. She bites them terribly hard due to what i think is frustration. I’m thankful you are able to talk about these issues and share your insight with us all. Sending big hugs to you sweet girl.

  5. 5

    Rebecca said,

    Karly, thank you so much for sharing with us. The insight you provide us is wonderful! I think that finding your blog should be on the list of “things to do when you get a diagnosis of Rett Syndrome.” Thank you so much. I am going to send the link to this page to my daughter’s teachers and therapists. Thank you for sharing your life with us.
    -Rebecca

  6. 6

    Bethany Crossley said,

    Karly, thanks for sharing more of your experiences. I love to read your blog!

  7. 7

    Lisa said,

    Karly,
    I’ve really enjoyed this entry. Many of the things that you mentioned have explained a lot of behaviors that I’ve noticed with my student. She absolutely loves the windows in the classroom and was enthralled by the Christmas tree. I guess it was the twinkling lights. One day last week, she was the picture of pure joy….looking at the tree and listening to her music. :)

    I’ve gotten so much insight and inspiration from your entries. I’m hoping that I can use what I learn from you to help my student. You’ve been such a blessing. God has given you the voice for so many who haven’t found their’s yet. Thanks for being willing to share.
    Have a blessed Christmas!

  8. 8

    Amy Jacobson said,

    Dear Karly,
    Thank you for sharing who you are with us. I don’t know if you remember me; I am Norma’s youngest daughter.

    My mom stayed at our house and left you (well, not you-your website!:)) on our favorites on the family computer. What an incrediblly great surprise.

    It has made me sad that I was not able to get to know you the way I could your mom and Leah. maybe the more accurate way of putting it is that I didn’t take the time… or I was apprehensive that I wouldn’t say or do the right thing. Thank you for helping me get to know you a bit, Karly.

    Love to you, your mom and Leah,
    Amy

  9. 9

    Sandy said,

    Karly,
    I think it is just wonderful that your willingness to help others has you sharing such personal things with all of us – I have no doubt that you are not only touching others lives, but truly making a difference in them! Bless you girlfriend!!

    Sandy

  10. 10

    Bethany Crossley said,

    Again Karly, Wow!! I love your Rett Body blog updates! They provide insight and compassion~

  11. 11

    karen bohnert said,

    Karly-
    You never cease to amaze me!
    Karen

  12. 12

    Bethany Crossley said,

    Karly and Elizabeth,
    Thank you so much for sharing more of your perspectives on life and on living with the physical challenges you endure. I am grateful that you share your experiences because they give voice to what so many others must feel and experience…and they open up the hearts of those who walk ignorantly or blindly past all the beauty that all of God’s children bring with their many talents and gifts to this life’s table. I am so sorry about the “care”giver, who didn’t show up!!! That would have been very hard, on everyone involved. I can’t wait to read your future blogs. Thanks for sharing what you have!

  13. 13

    SAra said,

    Karly…Im a 15 year old girll. I desperately want to help find a cur for Rhett Syndrome. You amaze me by the little things you do. You have accomplished alot. I will pray for you every night. Your a great girl. Dont let your disability definr you be you and no one else.

    Love Sara

  14. 14

    Karly, thank you SO MUCH for such a wonderful blog! I stumbled upon it a couple weeks ago and my husband and I are so grateful for every word that you have written. You have explained so many things that we just didn’t understand about Sierra until now. How inspiring that you and other woman with Rett Syndrome have learned to communicate so well. It makes me feel so optimistic for my daughter. Thanks again and please don’t stop!

    Elaine (Sierra’s mom)

  15. 15

    Ashley Hazgg said,

    Karly,

    I can’t thank you enough for putting together this website and sharing with us your experiences. My daughter is 12 years old and also has a diagnosois of Rett syndrome. Your words have inspired me and have helped me to understand better about the way Edie may possibly perceive things. I have shared your website with many Rett families, and you have already been an inspiration to so many of us! Thank you doesn’t seem adequate. You are a strong, wise, young lady and have blessed my friends and family by sharing your experiences with us. I wish you only the best opportunities life has to offer and will keep you and your family in my prayers.

    Ashley Hagg

  16. 16

    Amanda Wittman said,

    Karly, you have expressed yourself beautifully and will inspire many. Your words give us an insight to what has been wondered and I commend you for your diligence and passion.

    I just signed up with RettNet a couple of hours ago and forwarded to your link. I am amazed at what I already learned! I found the International Rett Syndrome Foundation site while searching for a contact person within the Rett network for Arizona and New Mexico. You see, I am a representative for Tobii-ATI. I work closely with Rett families in Colorado and the success of our Eye-Tracking devices have been phenomenal. EVERY one of the girls achieved successful accessibility! Since our first meeting there has been a tremendous amount of excitement for the opportunities available and they are taking the steps to acquire our devices. It is amazing that our devices can give so much hope, open the lines of communication and change lives. I wonder, have you tried the MyTobii P10 or the CEye? I recommend you look into it if you have not. You can take a look at our website: http://www.tobiiati.com or feel free to contact me and I can put you in touch with your local representative.

    Again, I applaud you for the steps you have taken in Rett awareness. I feel blessed to have come across your site and I thank you for enlightening me and so many others.

    Amanda Wittman
    amanda.wittman@tobiiati.com

  17. 17

    Carmen said,

    Hi Karly,
    I am a music therapist who works with a 9 yr old girl with Retts. Her mom was sent your blog who forwarded it to me. I’ve been reading and taking notes from your blog all afternoon. Mom and I find it both fascinating and overwhelming to think that her little girl might be understanding a lot more than she’s been given credit for. She also has scoleosis and can not walk, eats mostly with a feeding tube and at this stage does not communicate however, I do believe and have for the almost 2 yrs I’ve worked with her that she does understand more than she’s been given credit for.
    I’m interested in fc (facilitated communication), I’ll reasearch that. She loves music, it seems to relax her, appears to stave off seizures at times and can excite her. Especially the drumming with the djembe’s.
    Thanks for all the valuable insights, it has motivated me to try to do things a bit differently… specifically the way I talk to her and giving her more age appropriate discussions. We’ll see if this makes any change. Our sessions are usually anticipated with perceived happiness by mom the teaching assistant and myself.
    If you have any recommendations or feedback for me Karly I would love to chat with you.
    All the best and keep blogging! You’re so right, you’re the expert!!
    Carmen

  18. 18

    Lou Velasco said,

    Being a grandparent of a Rhett child she is 2 yeras old the things you have taught me with your comments, feeling and emotions will help me a great deal with loving and caring for my granddaughter. Some of things you mentioned I already had a feeling my granddaughter Sydney was expressing. Karly I just want to express my great appreciation for sharing everything you have with all of us it will helkp my granddaughter as shen grows older and help me love her more. Thank you and Bless you.

    Lou Velasco

  19. 19

    wanda stein Fredonia ny said,

    hi your web site is very nice i have a daughter with Retts she was 5 then I have gotten a lot of therpy for her and she goes to day rehahab it is a school for special need My daughters name is Kylinn she is now 28 she has been thru alot she does not talk wears diapers and has seizures she is on medication to help control them we go to cleveland clinic that is were her doctor is she was the first girl there diagosed with Retts she still walks on her own but gets tired easy she can feed herself most of the time she is losing her swallow she drolls alot more than ever before she can eat about anything as long as it is cut small and is not tough Kylinn has 2 brothers and a sister they are very good with her they have all grown and have famlies of there own my brothers are in service 1 Navy and 1Army and both have been over sea twice now my younger brother is leaving for the 3rd time in March I have nieces and nephews they let me play with their toys most of the time soI guess I am pretty lucky to have them because they say they are lucky to have me mMy mom says I am her angel and that she was blessed with me and that God only gives you what he think you can handle but some days and night are rough for her because Iam up most of the night and during day I some time yell and then again I smile and laugh This is alittle bit about me and my famliy thank you for listening My Mom Wanda and me Kylinn

  20. 20

    Anna Chaseling said,

    Hi Karly,

    I am so greatful that you have decided to share your thoughts and feelings with us. I have a two and a half year old girl that has just recently been diagnosed with Rett and reading your words has given me so much more understanding about my Kayla, I can’t thank you enough. You have also given me hope that someday Kayla will be able to share her thoughts and feelings with others just as you are now.

    You talk about how your music therapist, Karen Bohnert, was great in helping you find a way to express yourself through music. If you could share with us how she did this, that would be wonderful so that I could pass on the knowedge to Kayla’s therapist.

    Warmest Regards
    Anna Chaseling

  21. 21

    Ann said,

    Karly,
    Our daughter with Rett is 8 but so like you in so many ways. She is starting to read–which has always been my biggest wish for her. I hope one day she can read your blog and tell me if this is what she feels like. I hope you have a restful night and wake up to some sunshine in the morning. Katie has not woken up tonight yet. I am wondering what she dreams. Do you have dreams while you sleep? In your dreams, can you do things you cannot now? I always wondered about that…
    Ann

  22. 22

    Darby said,

    Hi Karly!
    Thank you so much for writing so beautifully how you feel inside and allowing the world to experience it from your point of view. I laughed and cried throughout your blog entries and I have learned a lot about how my little girl, Jenna (3 years old) feels some of the time. I have never questioned her intelligence so I get irritated like you do and I’m sure she does, when people look at the physical issues and turn them into mental ones that simply do not exist. I scooped her up last night and told her about your letters and some of the things you said. I asked her if she wanted to learn to type someday and told her that her whole family KNOWS she is very smart and just because she can’t physically say it yet, we know she loves us and we love her. She gave me a big smile and a snuggle. I have always wondered about her sleeping habits and I never would have thought about the weightless feeling so I am so happy to have heard that from you. We’re going to try a weighted blanket and see if that helps Jenna some. I want you to know how much of an inspiration you are to parents, families, friends, etc. that have been touched by an angel as well as to other girls and women like you. Thank you so much for all of your hard work and determination and thank you to your mother also for being there by your side and letting you know that you are loved no matter what life throws at you. *hugs*

  23. 23

    DianeLee said,

    Hi Karly,

    It makes me sad to read about how the speech therapists hurt your feelings and discredit your method of communication. Do they read your blog? Do you type what you are feeling while they are with you, so that they can read how their actions seem inappropriate to you? I would like for you to ask your therapist to write her feelings about your facilitated communication. Tell her that you would like to include her opinion in your blog. Also ask your other therapist to do the same thing. It might be helpful for you to hear exactly how they feel about your capabilities and limitations.Maybe then you can clear up their confusion.

    Just know that I am so happy for your ability to communicate, and I long for the day that I know what my granddaughter has on her mind and heart. Please keep sharing with us the things that you feel and know.
    I have one other question. Before you could type, do you remember what you did to let your mother know that you loved her? What did you do to acknowledge the love that she showed to you?

    Please continue to share your thoughts and feelings because you are helping so many people in so many ways.

    May God bless you,
    Diane Lee

  24. 24

    Flory said,

    Karly,

    I first came across your blog when the neurologist thought my 3yo daughter had Rett. After six months of regressive skills we were convinced that she like you was suffering from this disease. Just six months ago my little girl walked, talked, and ate. Today she is fed through a Gtube, does not talk or walk. Still I do not know what is stealing my little girl away. However I do agree with you on one thing. There is a GOD and we all have a purpose in this world. Karly there will be bad and good days. Our FAITH will give us strength to endure the toughest moments in our lives. GOD has chosen us moms to have special angels like you and my Isabela. I know that never has there been a moment when your mother has ever thought that you are a burden to her. You are a blessing sent from heaven. Every moment that she has with you, that I have with Isabela is a BLESSING, never a burden! You are only of skin and it is normal to have sad days but your blog inspires me and all of us… May GOD bless you always.

    Flory

  25. 25

    David said,

    I am the father of Claire (5 on April 23 2010) who also is affected by RS. I just stumbled onto your blog site and am blown away with your stories and observations. I feel as though you are a sort of window into my own daughter’s mind. You are very enlightening and I look forward to more reading.
    I wish you and your family the best.

    David

    • 26

      spiritdances said,

      I am so glad you found my blogpage. I remember what it was like when I was five. It was a hard time, but my parents didn’t know that I had Rett Syndrome, because no one had heard of it yet. I am glad your daughter has you for her father. I want to tell you that it made all the difference for me when my mom started believing her instincts and treated me like I was intelligent. It was the thing I needed to start feeling like life would be possible and not a life filled with limitations. I know your daugther will do better if she knows you have hope for her. So thanks for reading my blog and giving me a chance to speak on behalf of the Rett girls who are not yet able to communicate.
      Love, Karly

  26. 27

    Karen said,

    Hi Karly

    I just want to connect with you and say from my heart, thank you for sharing your life. I really appreciate your courage, and your openness. You may not realise it but it is very helpful how you describe what it’s like to live in a body subject to Retts, and recently you mentioned how sometimes your body is not your friend. It helps me understand what it must be like for a little 5 year old girl I sometimes babysit. Apart from the lack of language, the hardest part is looking for any response to an experience, and decide if it’s a true indication of like or dislike, or just a Retts reflex.

    You are a very gentle soul, and I suspect the same is true of other Retts girls too. Maybe this is a gift to cherish in the face of a superchallenging body suit you all are trapped within. Perhaps the more you can explore your spirit nature, the greater refuge you can find from the harsh conditions of the outer world.

    Big hug, many thanks and blessings,
    Karen

  27. 28

    Teliah Dickinson said,

    hi karly we have rote to you befor i think you a cleva by

  28. 29

    Megan said,

    Thank you so much for your writings. My daughter, Norah (2 1/2) was just diagnosed with RS a couple weeks ago. Reading your posts is so inspiring. Please keep posting. We are still going through a hard time, but I hope to find the strength that you and your mother have. You amaze me. Thank you.

    Thoughts and prayers are with you.

  29. 30

    eve blockley said,

    Dear Karly, i cannot express my sincere joy and thanks to you. My beautiful daughter rachel is 29 years old, and after years and years of not accepting her diagnosis 25 years past at last she has now been diagnosed with atypical retts syndrome. Being a single mum reading your blogs sent my heart racing like i can never express, the many many things you have talked about with such feeling and accuracy i remember all with my Rachel the times i have expressed too many professionals of all kinds, my daughter understands everything i know, before and after she was diagnosed. Before i could feel they thought i was a mother who wanted to believe this but was all in my mind!!! i am overwhelmed with your life story and would pray you would put it all in a book. I know if i had found this 20 years ago my poor girl and consequently myself not understanding the pain she was suffering. A parents worst fear watching a child suffer and having no communication. My Rachel will be seen in a completed different light because at last a young woman can communicate so beautifully. Pleaase reply if you can if not thank you with all my heart .


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