Thursday, April 28, 2011
Tuesday, April 26, 2011
Thursday, April 21, 2011
I slowly stretch and massage her legs and back as she shakes from the pain,stiffness and tremors that ravage her mind and body..they slow and she smiles. Smiles at her mother..eyes twinkling.Saying so much in her silence.
I wait until she can move on her own before I lift her from her bed to carry her to the down the stairs and to the room where she sits in wait, to be readied for the day. She smiles at me with love
She waits..still with patience as I wash the sleep from her eyes. She frowns at me as I uncross her ever clasped arms and hands so I can dress her. She cannot put her arm in a sleeve nor her leg in a pant..and she smiles and searches my eyes..each and every day. Waiting for me to tell her what I am doing and what will happen in her day. She smiles at me with love.
I give her her morning meds 5 in all and she sticks her tongue out and sighs. Only a few moments to herself before she is medicated into safety again. Safety from the seizures,the anxiety, the stomach pain and the allergies she suffers from..not a guarantee but the only thing we can do. She sighs and smiles at me with love.
At the same time each day I carry her to her chair for the hour long ride to school where she will arrive asleep. I strap down her feet, her waist,her arms,her chest. She searches my eyes if I forget to tell her what I am doing and how much I love her and will miss her. She smiles at me with love.
She rides the lift onto the bus head now turned from me. She does not look back as they take her away. I smile at her with love.
I spend my day thinking or her and teaching and helping those smiled at this day. Before they went back inside to think and hope and pray.
I busy myself till she comes back to me..otherwise I lie in bed the never ending sadness eating away at my soul. If I'm not awake I will not cry. I feel myself growing old.
It's time. I wait to see her yellow chariot as it sails from up the hill. My heart beats fast as the door opens waiting with held breath. She lifts her head, eyes twinkling and she smiles at me with love.
I roll her in and feed her as she pushes a button to tell me about her day. She smiles and giggles, eyes singing as she listens to what she has to say.
We stretch, we read, we walk, we play until it's time for bed. I lift her tiny body into her big girl bed.
I close my eyes and pray and thank God for another day. I pray for as many more as he will give as she smiles from where she layes.
I kiss her tiny face, her eyes, her hands her head, she smiles at me with love as she lays there in her bed.
She smiles at me with love
Wednesday, April 20, 2011
At Hippotherapy Abby has a new therapist. She is so incredible..the things she can get Abby to do. After last week another parent brought in a flip camera...man gotta get me one of those. How convenient!
Last week we sat there in tears as we watched Abby hold sponges in her hand and drop them in a bucket.
This week we watched as the therapist had Abby ride facing forward,and backwards,side saddle and laying down,holding herself up. That is so much more than she got from the last therapist. This therapist has Abby riding,using her hands and using words. Yep words. I don't know how much Jen got on video yesterday and we arn't allowed too close but it was amazing!!!
Yesterday Abby said, Walk on,all done and no several times. And she threw some royal dirty looks when she said all done and she still had 10 minutes left and I said no...
And here we get to the always something crap out of something good. When the session was over the therapist told us this would be her last session. She just has too much on her plate right now and cant do this too. What??? Ahh come on. Why is it every time we get someone good they bail??? Hopefully the girl she was training learned something.
**This is a late add on but Jenn sent me video she took. We have been in the arena rather than outside so we have less room to move around. Hope you can view what little we got. We were very excited. Cant wait till we move outside so we can get more!
View video here....I think
Friday, April 15, 2011
Communication Bill of Rights
All people with a disability of any extent or severity have a basic right to affect, through communication, the conditions of their existence. All people have the following specific communication rights in their daily interactions. These rights are summarized from the Communication Bill of Rights put forth in 1992 by the National Joint Committee for the Communication Needs of Persons with Severe Disabilities.
Each person has the right to
- request desired objects, actions, events and people
- refuse undesired objects, actions, or events
- express personal preferences and feelings
- be offered choices and alternatives
- reject offered choices
- request and receive another person's attention and interaction
- ask for and receive information about changes in routine and environment
- receive intervention to improve communication skills
- receive a response to any communication, whether or not the responder can fulfill the request
- have access to AAC (augmentative and alternative communication) and other AT (assistive technology) services and devices at all times
- have AAC and other AT devices that function properly at all times
- be in environments that promote one's communication as a full partner with other people, including peers
- be spoken to with respect and courtesy
- be spoken to directly and not be spoken for or talked about in the third person while present
- have clear, meaningful and culturally and linguistically appropriate communications
From the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for meeting the communication needs of persons with severe disabilities. Asha, 34(Suppl. 7), 2–3.http://www.asha.org/
Monday, April 11, 2011
This is a repost from 17 months ago. I thought it needed some revisiting for my new readers
Girls with Rett Syndrome have so many struggles. When first diagnosed parents are usually told to take them home and make them comfortable. Don't let this get you down. The genetic scientists are clueless. Sad but true.
For the parents:
She is still your daughter and the same baby you had the day before the diagnosis.
Do not take her home and give up. Through therapy she can be strong and through persistence and education you can learn to communicate with her.
You have to learn to dream new dreams for her and for yourself.
It's OK to grieve. This is going to be a long hard road. And she is going to give you more joy and love than you ever thought possible.
It's OK to let others help. You have to take breaks or you will be worthless to her.
Most important....You have to CHOOSE to be happy. Remind yourself of this in the down times.
Just because they can't talk doesn't mean they don't have anything to say.
Invest in eye gaze equipment and picture symbol software. You will find that though she may not be able to touch or say the right answer this doesn't meant she isn't looking at it.
Give her time to answer in her own way. Most thought processes take 30 seconds or more and it is very important that you don't ask her the same question over and over.
Our girls have very low muscle tone and low body awareness. Physical therapy is a must.
They quite often suffer from vertigo and equilibrium issues. This is why they pause in doorways,at pattern changes in the floor and why the seem unable to step down. A light floor to a dark floor looks like a drop to them. A 6 inch stepdown looks like 3 feet.
The process in their bodies that makes melatonin(the natural hormone that makes you tired at night) is not completed in them. Melatonin can be purchased anywhere. Check with your doctor for dosage instructions.
The screaming that occurs during regression is due to many factors. Such as Lack of sleep,confusion,frustration and gastro problems. Most suffer from some form of Acid Reflux or extreme stomach pain that can be controlled with medicine and diet.
When she stares at you and leans forward and then does it again..consider that because she can hear her thoughts in her head she thinks you can too.
For the Educators and Caregivers:
Please read all of above. Especially the last paragraph.
She has a movment disorder..not unlike ALS. She is trapped in a body that doesn't work and is weak. Her brain is in tact. She will take longer. You have to have more patience with her then you thought possible. She will show you if you let her. You have to learn her language which includes eye gaze,body language and movement.She will not perform for you. Her body does not work! Educate yourself and when you do..think of this student or patient as if this were your own child. You must imagine yourself or child waking one day and having invisible tape over their mouth. Your hands are tied behind your back. Your legs don't work. Your tummy hurts all the time and you have trouble breathing. How would you function? How would your own child? Empathy is a must.
Please please order a copy of The Rett Syndrome Handbook by Kathy Hunter....It will be one of the most helpful things you ever do.
Pathways To Learning In Rett Syndrome- A book every school with a Silent Angel should have
Please print this out and read it. I learned so much here:
Websites and support
Girlpower 2 Cure
Montefiore Rett Center
Blue Bird Circle Rett Center
Peace and Love
Friday, April 8, 2011
Yesterday I took Abby into church to meet with the ladies in the bible study group. They had been asking me to come in for a while. One car and Mr Workaholic didn't realty make that possible. We were going because they want to help me take care of Abby. Respite, babysitting, in case of emergency things like that. I have all but made the final decision that I don't want to have another stranger sent from an agency in my home. Especially after finding out the last one..one of the biggest in the state doesn't even drug test their employees. Seriously!
It was hard to take her in there. Those women are so loving and do not hide their emotions well. Abby was all but unconscious from the up in seizure meds so there were a few tears.
I didn't really prepare well. I just kinda went in a blabbed. Some of the ladies looked pretty overwhelmed by the thought of the meds and the gtube. Its not hard. I got showed once before we left the hospital. There is a ton to remember but everything will be written down step buy step and no one will be left with her until they are comfortable.
I just need to be able to go to a movie or a library or anything. The boys get to leave and stay gone whenever they want. With my responsibilities and lack of a vehicle leave me trapped...and I am beyond losing it and past the pride portion of not asking for help. I don't want money just time and care. Unless someone were to win the lottery....
After the meeting I decided not to take her to school. She had not woken up since 9pm the night before except for a moment while I was dressing her. She ended up sleeping till about 430 pm. I hate seizure meds almost as much as I hate Rett Syndrome! Almost!
OK so the good part..or the better part. As most of you know Abby has almost no functional hand use. She occasionally will swipe in the direction of what she wants but rarely makes contact and cannot grasp or hold.
Yesterday at Hippotherapy she amazed us. It may not be something that would be amazing to a Neurotypical parent but for a Rett Parent...We don't take anything for granted.
I was sitting next to Jen. Rivers Mom. Abby was on her horse on the other side of the arena.I really cant see that far so I thought that I imagined that Abby had something yellow in her hand. Jen turned to me and said did she just have that in her hand? We weren't sure so we kept watching. When they got her closer they did it again. She reached into a bucket and pulled out a yellow sponge the lifted her hand and dropped it in the bucket. You would of thought she just scored a touchdown at the Superbowl..except you cant scream at Hippotherapy because you will spook the horses your children are on. We stiffled our screams with hugs and tears. It was an incredible moment.
When she got off the horse I asked them what they were doing and she showed me..She made her do it again while standing with support and she did it. The therapist there is new and was just doing normal OT. I love the new people that come in with that lets see what she can and cant do and work on it. Because frankly, I have had it with the old, tired, none of these kids can do anything but soil themselves attitude.
Her Boss is getting a call today.
And Abby will be getting a bucket full of sponges in her Easter basket!
Wednesday, April 6, 2011
I friggen hate Rett Syndrome!
Last night I was giving Abby a bath..she had gotten very upset because someone who was watching her while I went to the store let her soil herself. She was in hysterics.
She bit me and pulled my hair as I cleaned her up. When she calmed down and smiled at me...I just lost it. I had one hand on her legs and one on her head to keep her from falling and I just buried my face in my shirt and bawled as quietly as I could. She was so pretty, with her big blue eyes. So grateful that Mommy had fixed it without saying a word.
My heart just ached for her. Why wont it go away? Will she ever be able to wake up from this nightmare? Where is her cure? We pray..we beg..everyone we know does...why can't she be fixed? Healed? Please God... And if one of you dares tell me that some must suffer so others may know joy will be uttering your last breath...just saying.
This morning was good. No problems...Until...we arrived at the Community Center for swim therapy. As we pulled in she was fine. When I put the van in gear George yelled that something was wrong. I jumped out and opened the door and she was completely slumped over, head to knees. I thought, Oh no not drop seizures now. Drops are when they seem to just lose consciousness for a few to 30 seconds or so, then they come right back like nothing happened. She didn't come right back up and I could hear gurgling. I lifted her up and she was gray..lips were blue and she was gurgling. I opened her mouth and her tongue was shaking. I opened her eye and it was twitching and rolling. I called her name...nothing..over and over.
I called my friend who's daughter has the same deletion of the gene that causes Rett Syndrome that Abby does and begged for help. She told me to get to a hospital and I freaked. Squeaky high pitch sobbing. I knew I needed to get her somewhere. The nearest hospital would ask us a thousand questions then send us to Children's 20 minutes away. We were losing time.
We flew home. I ran inside and got the Diastat I should of been carrying with me. We gave it to her in the seat of the car...Diastat stops the seizure and knocks them out and she was already knocked out.
Off to the hospital. 5 hours of the same old she has Rett Syndrome and it is a seizure disorder..their words. Neuro on call doubles her medicine that I hate anyway. The one that has made her a zombie. I throw a fit and want to talk to her Neurologist..Nope do as your told lady.
She finally wakes up after much prodding from me. She had been on her side snoring like a lumberjack. When she opens her eyes and turns to look at the doctor the doctor actually snapped her head a bit and said,"Oh my God. She's beautiful." I know...I know.
I tell them as we are being released that I will not be giving her the change in med until we speak to her doctor..they just stand there giving me the studies say per weight blah blah blah
My 24 hour a day studies say this crap took what was left of my baby from me...just like I said it would.
Off to the pharmacy..where they give me 2 boxes of double dose Diastat. Yah. She went from 5 mg to 10 mg with one seizure. I questioned it. They told me that was what was ordered. I question it again and they tell me its based on weight. I ask them to check and they tell me it's fine..it just didn't sound right.
Call the Neuro when we get home to get a follow up appointment because we arn't scheduled to go back in for 7 weeks..of course they see no need to see her. Friggen fracken geiglag fruggle boogah gak!
I question the meds and the nurse says the Diastat is wrong....I TOLD YA SO!!!!!
I question the other. The everyday Zombie med and tell her it's a big jump and she's still a zombie. SOMEONE ACTUALLY LISTENED TO ME! I know right? I didn't even ask if you were sitting down did I? She is going to contact Abby's Neuro and tell him of my concerns because she shouldn't still be lethargic and if she is they will more than likely want to make a change.
That's what we have for now..she's tired but happy. Going to keep her home tomorrow to keep an eye on her.
Friday, April 1, 2011
No one is more frustrated and pissed than a Rettmom fresh out of an IEP for a girl with Rett Syndrome.
After our meeting..the 4Th of the year I think...My head hurt. I was getting dizzy from holding my breath. My fingers hurt from gripping the steering wheel. I felt like one of those old Felix the Cat clocks..showing my age..tic tic tic with my eyes rolling to and fro.
I need to change my standard operating procedure for these things. Last time I went in thinking I was prepared. Thinking."they" actually got it. I had given them books,literature,papers,studies,videos...
I even went in thinking..almost chanting..be nice..be nice.. Don't flip out. Don't scream..that wont get you anywhere. Didn't work. I was hateful. Almost mean.
After that meeting our super Neurologist called the AT and spoke to her for several hours. She told me she was nice and didn't understand at first but she did now..I thought she was right. I don't know how you cant understand that you cant make a Rettgirl use her hands. You are not going to get a non verbal child to speak. A child that cannot use her hands will not point at a picture or press a button. She is no less intelligent than her peers..the ones with devices they carry around with them because they can press the buttons and point. She looks at what she wants. It's called eye gaze. Videos,books,papers....not like I'm making this stuff up.
I was told about a month ago that the district would be purchasing a Dynavox Eye Max for the classroom...for the classroom because..well lets face it..they have to say its for the class. This one kid isn't worth the money and doesn't have the same basic right to communicate that her peers do. I had requested a My Tobii. They work great with Rettgirls and I have seen Abby use one.
So I go in and sit down...There are 3 people not there that I had been informed would be including a district representative and her Kindergarten teacher.
Be nice..don't verbally shred the AT like you did last time Terri. Act like a 41 year old mother and advocate. Not a rabid banshee for crying out loud. Let them talk. Hear what they have to say. Don't say no to everything and don't get pissed!
I have no idea where it went sour...probably when the AT opened her mouth. She actually said, and I quote," I am going to have to disagree with your Neurologist. Just because Abby was able to look at pictures on a screen doesn't mean she can comprehend what she is looking at. I saw no cause and effect. There were no questions and answers. Just Abby looking at pictures on a screen. It doesn't prove comprehension."
This after talking to the Neurologist. After admitting to her that she had never worked with a child with Rett Syndrome and didn't understand eye gaze. She then talked about tickling Rettgirls to get answers. The ever brought up head switch. Abby is the first Rettgirl she has ever dealt with. She observed 2 at an AT conference last year at a booth for a few minutes. Now she apparently knows more than me and one of the worlds authorities on Rett Syndrome.
So what is she thinking? I think its a my way or no way kind of thing. I do AT so I know more than you. I'm thinking I'm never going to get anywhere here. I really don't think I can reach these people.
Rett Syndrome is what I do. I live it, I breath it.
The consistency thing kept coming up...HELLO!!!! They want her to be consistent and scoffed at my revelation that sometimes a blink while looking directly at you is yes. The next time yes is her putting her hands up in the air in the touchdown pose. Sometimes it's a smile while she hugs herself. It all means yes... how about some quotes from the worlds authority on AT and Rett Syndrome (Linda Burkhart):
".....Language components: motivation, processing of language in
activity, pragmatics, processing of questions, auditory filtering,
processing of symbol set, syntax/grammar, attention to task, memory
• Juggling means that the child may only have some of the ‘balls in the air’ at
any given time, and having all the ‘balls in the air’ will be rare. This explains
why performance is so inconsistent and can not always be predictably
• Need to take successes and move on, as opposed to requiring repetition of
the task over a given number of trials
• Provide opportunities for repetition/practice within natural contexts
without pressure. Use variation and natural motivation
• Recognize the difference between Testing and Teaching
• Children learn by doing
• Emphasize Experience - not drills
• Coordinating all components of a task on an automatic level is extremely
challenging for children with Rett Syndrome
• Child can become easily frustrated
• If we wait for everything to develop in a coordinated fashion, we will be
I have given them this literature 3 times. Every member of the team and the district. Linda Burkhart has never met Abby. The first time I read this paper I jumped up screaming, " YES YES YES" It was like she had met her and had wrote the paper on her.
How did I handle all this? Dirty looks. Glares. A couple mutterings of "Whatever you don't listen to me anyway."
Then I made her functional skills teacher cry...Totally not my intent. I adore that woman but I was fed up. But, If they are not even going to try to work with ABBY..i,e. INDIVIDUAL EDUCATION PLAN..then there is really no point in her being there. SO I put half days for next year on the table. If she is just there to socialize and get only the bare minimum therapy then it might as well be playtime and respite for me.
The PT refuses any more than 30 minutes a week. Abby's scoliosis curve has gone from 17 degrees to 34 since August. I already doubled her Speech and OT time.
Why is a woman that stops by a couple of times a month in charge of my child's education?? Somethings gotta change. If that means keeping her at home and doing it myself then by God that's what I will do