One of those days...Rett Syndrome

Every once in a while a special needs parent has one of those days. Those days we don't often talk about or admit to. Not publicly and not to anyone..not even family. We just endure it and let it go. Then there are days when we snap. Today was and still is one of those days here.

This morning I took Abby to Physical therapy after having a month off. She woke up smiling and happy as a clam. I woke up grumpy..still mad at her brother from the day before and pretty sure I may have missed my depression and anxiety meds for a few days. I could just feel it.

When we got to therapy she was happy. When we started..or she started working she started to whine. That bitchy I don't want to do this, stomp her feet whine. I tuned it out. She started to growl at me. That's when the guilt-aggravation-feel sorry for myself started. God why do I have to put up with this? Why do I never get a break? Why must EVERYTHING be such a struggle? This poor me thing us parents do. It brings on a guilt for even feeling that way that is unimaginable. SHE can't move. She can't talk. She has scoliosis and is tube fed. She is hurting and I'm sitting there sick of it. I don't pull the selfish asshole card often but this morning I couldn't help it. I was angry with her. I was angry with myself.

As we were leaving she decided to get back at me in the only way she can and started biting me. When I got her jaw torn away from my head I decided she was gonna walk and she dropped like an abortion protester. Dead weight. Take that Mom. I calmly carried her to the van and calmly put her in it. On our way to her next therapy.

On the way...Miss Happy Clam was back..until we got there. The whining,clawing, screaming started again. I quietly tried to sooth her. Begged her to stop and stroked her hair. She is weak. She has scoliosis that is ravaging her back. I know she doesn't want to do this. We have no choice. I started to get aggravated with her again. She continued to bitch..then the real tears came. Oh no. Real tears kill me.

While we were waiting for the massage therapist the receptionist let us know we were out of our pre-paid visits. Panic....Did I want to pay today or next time?? Panic...stuck on stupid. I muttered Next time please. Felt like I was going to throw up, My mind was racing while I'm holding my flailing,screaming, out of control child. Then she leaned in for a cuddle, kinda wiped her sweet, perfect nose on my shirt. As I went to pat her back she leaned in...and bit me. Just as hard as she could and lurched back.

I am not a crier. Never have been. It takes a lot. Bout that time the receptionist sat down next to me holding a baby. A perfectly normal, happy baby. I lost it. I burst into tears and was darn near choking to death to keep them from being audible sobs.

After her massage she calmed down. In the car on her way home. Happy clam. I just pulled over and let it all out. I cried because she cried. I cried because I was mad at her. I cried because I had the nerve to even think,"Why should I have to deal with this? Constantly. 24/7?"I cried because I will never have anything that even resembles normal. Then I cried because I have no right. I'm not trapped in a body that doesn't work. Other special Moms know what I'm talking about here. A special child brings more love and joy than you ever thought possible. They also bring more emotions,regret,what if and poor me's than you'd ever care to admit.

Today was one of those days. Sometimes you just lose it. For me I don't think it was OK. If I was talking to someone in my exact situation I would tell her it's OK to feel this way. Today was one of those days.

Rett Syndrome and Hippotherapy.

Abby has started Hippotherapy this year and we are so proud of her. This is one of the many outside therapies we have her in and they have been so incredible with helping us so we can stay in the program. Thank you Mary Jill and NTRC!

Riding like a big girl

She is doing so well. So proud of my big girl

Holding a ball while riding. I have to remember to ask them where to get these clear balls

Look at me Mommy

Do you see me Mommy? I did it!

Things you never ever say to a Special Needs parent

When I first thought of this post I was in a rage. Imagine that. This post has been coming for  while. I don't know if it will help or enlighten any of the offenders but I hope so. I hope that until you read this you had no clue what you were doing or saying and I hope you will think next time you speak.

Things you never...ever say to a Special needs parent. In no particular order

Does she go to school?
What? Why? Are you planning on funding her college? Would you ask another child's mother that? Of course she does....and if she doesn't...their are reasons why that are more personal or painful than you can ever imagine so drop it. Instead....you may ask how old she is, or just change your wording to something you would ask another family like,"Oh does she go to Gracemore? I wonder if she knows my niece Sally."

Does she go to a REGULAR school with Normal children that can learn?

You would be surprised at how many times we are asked this and by who. Friends,family members,complete strangers. You do realize that this is my child right? She isn't a lame dog I decided to go ahead and keep. She is my heart, my soul and my every breath. Just as your child is yours. Think about how crazily protective you are when your child is hurt or helpless. That is my child's reality. Do not mess with me. For the mothers that ask their own daughters this question about their daughters and grandchildren. Shame on you. You can ask things like...."Are her friends really helpful.?" Wonderful way to get your nosy, uneducated, question asked without you sounding like an insensitive ass.

Do you think she knows who you are?...or look she knows you're her Mommy.

Ya think Magee? I gave birth to her. She counts on me for everything but her breath and her heartbeat. I'm pretty sure she knows I'm not someone who just walked up. And she is not 4 months old. She can't use her body. Her brain is intact.

Ya know I don't think you should...or Don't you think it would be better if...

Nope not allowed. You have not once begged your child to breath. Held her while she seized or slept with one eye open for 7 years. Nor have you ever offered to change a diaper or help her out of her chair. You stand there with your mouth open while you watch me struggle to do everything. When I ask for help you ignore or dodge the question. If you do say yes you don't come through.You have no opinion. None.

What's her Prognosis or life expectancy?
OMG really? What if I walked up to you and said,"Oh my goodness she is so pretty. When do you think she is going to die?" And just so you know, my daughter can hear you. And none of us really care what you have read or what someone else told you. (Thank you for this one Bridget!)

Is she Retarded?

You would be surprised in this day and age how often we still hear this. A couple times a week. So is she? By medical definition...yes she is. By society's definition? No, that would be you. Thanks for playing.

Abby's Mom

Nutbag

Yah that would be me.

I sit here sometimes, trying to remember if I was always this crazy. I can go from Mother and friend of the year to absolute Psycho in nothing flat.

Yesterday started of well and good enough. I got up at 6am and very nicely woke up my son for work. Even though he is a grown man and should be able to do this himself. I got him and Abby's father off to work and everything was fine.

I took Abby to Physical therapy at the hospital and it went really well. I took her to the Chiropractor and massage therapist and was laughing and joking. I gave Abby half of her feeding on the way to school. Still fine.

At the school I unhooked her and reset her pump so she could do the other half of the feed when we got to her class as planned.(Her teacher had asked me if I could feed her when we get there on Fridays since I had changed her hours from noon to 4pm and she no longer had the nurse feeding her in her IEP).

As I was signing her in and grabbing my visitors badge like I always do I heard the secretary calling down to tell them Abby was there. When I started to open the door to go down the class the secretary told me to wait and that an aide was coming to get Abby. Instantly blood pressure starts rising. I explained that I needed to feed her and that I always took her to class and was told to wait.

It only took a minute for the aide to get there and by then I was fuming because the secretary wouldn't even look at me. I was trying to explain that I hadn't brought Abby's backpack or wheelchair because I had planned on feeding her and the chair doesn't fit in my van. No response.

When the aide showed up she told me she was going to take her down....blah blah blah. this could really go on for a while. Long story short. They wouldn't let me take Abby to class and insisted the nurse hook her up. I went through my story again and it was suggested we just have the nurse do it. I asked why I wasn't being permitted to take Abby to class and was told,"The doctor doesn't want parents just roaming down the halls."

Ok more blah blah blah

I ended up leaving. Don't know why I didn't take Abby with me. I called and left a message from the parking lot for the teacher. 3 hours later no call so I called the Principal...who we are both assuming is the referred to Doctor. She never said that and had no idea what I was talking about.

When I came back at 4pm to pick Abby up because she had no chair in which to ride the bus I went down to where the class empties out. Car riders and bus riders and was told I could pick up Abby in the office.

So, my crazy self goes in and rips my daughter away from the aide without a word and stomps out of the building.

By the end of the hour I had texted the teacher telling her Abby would not be returning to school until someone told me what was going on. No answer. No response.

Did I overreact? Probably.

What in the heck could have been going on that I couldn't do what I do one to two times a week? Heck I would of taken anything. There is a visitor...the class is having a bad day...they are testing...anything. But this whole cold shoulder...you are excused, no response did not fly well.

I am pretty sure normal people dont fly off the handle like that. Do they? Is it a Special Needs Mom kind of thing???

I'll keep you posted.

Pray for me.

I hate Scoliosis

Update...Scoliosis sucks!

We have had to change things around the last few weeks due to scheduling and Abby hasn't been able to go to the Chiropractor or massage for 3 weeks. Her back looks terrible.
After seeing her back today, the massage therapist thinks we need to go back to once a week for adjustments and massage. I agree with her. You can so see the curve coming back and the muscles on her left side are protruding.
Her PT this am said she is trying to rotate her spine also. I wish I had a magic stop it button.
Last year we had some generous folks pay for 32 sessions. That has lasted a year due to the first six weeks being x2 then the rest being every 2 weeks. We will run out of sessions in the next few weeks. I don't feel like I can ask them again. I had planned on using our tax return to help this year but with the $55.00 we had left after paying off my own Physical therapy and 3 trips to the emergency room we just don't have it.
I don't know what to do. Giving up our whole way of life once Rett syndrome hit has been hard enough. A vacation every 2 years involves Rett Syndrome. Every day..24 / 7 is Rett Syndrome.
I lay awake more often than not trying to figure out how I can work and take care of Abby too... I can figure out no way. We would lose her insurance that pays for all her formula, all her meds, all her diapers, one of her 5 therapies and their would be no one to take care of her every need or take her to everything she needs to go to.
As always. I will find a way...some how to get her what she needs. If organ selling was legal...I'd have nothing left.
I need a break. soon. Something to go right. I can't struggle like this forever. It's sucking the life out of me.

Rett Syndrome Choices.Education in Classic Rett Syndrome

Hello all! I got the following video last night. It was taken with my camera iphone so it is not the best quality. We cant find the cord for the camcorder. When Abby's last IEP report came back telling me she was pre academic and had single digit or no success scores in just about everything...I took to her iPAD. I chose a free app called Choiceboard Creator. We have 10 categories of 10 2 choice answers. We have colors,shapes,household items,body parts,numbers. We have the one you will see here and more. In this video Abby chooses ramdon people or characters. Her choices have a opposite character with them. A nickelodeon character has another shows character next to it. If the nser is girl there is a boy next to her and vice verse. The same for man,woman, Abby, Bubba. One the choices for President Obama there is a professional picture of an actor in a suit next to him. I pray that this is the just the start of what we will show you.. I am hoping this time we get a surprised...let's change our whole way of thinking attitude and not what we got last time which was, "You are her mother. We are never going to see what you do." from the school. She was 4 the last time I did our video what Abby knows series. I was recently questioned about weather she still had...I don't know how to put it. It came out as,"Just because she could kind of do it then doesn't mean she can do it now."

Eureka!!! And I TOLD YOU SO!!!!!

This is Dr Djukic. Our Sasha. This is the woman, the Neurologist who believes so much in my Abby. The woman who has used Abby's videos in her lectures and has tested her herself. Below you will find a video and an article that includes studies that my girl is in there and understands everything. She is trapped. It makes our VOICE for Abby campaign so so necessary. Abby is 7 years old and hasn't been able to tell me what she wants or needs since she was just learning how. Please watch,read and share.

You can donate to A VOICE FOR ABBY by clicking on the top right of this blog. In over a month we have raised only 100.00. One hundred dollars. I can tell you that would break my heart if this wasn't my child. My child looking at me with my eyes. Pleading..begging me to help her.



Article from PEDIATRIC NEUROLOGY.

Conventional testing underestimates Rett Syndrome patients' cognitive abilities
Published on April 18, 2012 at 9:13 AM · No Comments

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Researchers at Montefiore Medical Center have identified, in a pilot study published in the April edition of Pediatric Neurology, that children with Rett Syndrome, who cannot speak or use their hands to communicate and therefore were thought to be unable to understand and process information, do in fact exhibit meaningful visual search whereby they can process and prioritize information. This leads researchers to believe that conventional testing is not robust enough and underestimates the patients' cognitive abilities.

Rett Syndrome is a disorder of the nervous system, caused by mutation on the MECP2 gene located on the x chromosome, that leads to development reversals; loss in previously acquired language, hand use and in most cases, walking. The disorder, which exhibits no racial or ethnic predisposition, overwhelmingly affects young girls, who develop normally for the first year of life with initial signs of regression occurring between 6 - 18 months. One in 10,000 females suffers from Rett Syndrome, leaving them aware and alert but often without the ability to express themselves in any way.

Without the ability to communicate through speech or hand movement, Rett Syndrome patients have not been able to demonstrate their intellectual abilities. Now, researchers at Montefiore Medical Center, led by Aleksandra Djukic, MD, PhD, Director of the Tri-State Rett Syndrome Center, have shown that standardized testing, often used to diagnose autism, underestimates Rett Syndrome girls' abilities and the results demonstrate that capabilities surpass the current understanding of the disorder.

"It has been 46 years since the first clinical description of Rett Syndrome and until now there has been little indication whether sufferers can understand and process information. The results of our study highlight that more customized testing is needed for girls with Rett Syndrome, in order to be able to more accurately assess their intellectual abilities and psychological state," said Aleksandra Djukic, Associate Professor of Clinical Neurology and Clinical Pediatrics at Montefiore Medical Center and Albert Einstein College of Medicine of Yeshiva University. "It is a medical necessity for these girls to have access to eye-gaze speech generating computers in order for them to be able to demonstrate their mental ability and to communicate with their families."

Dr. Djukic uses cutting-edge, eye-gaze technology, a monitor which tracks eye movements using cameras and reflected infrared light and allows patients to answers questions by fixing their gaze on the answer, represented by an image. For Dr. Djukic and many of her patients, the eye-gaze technology has shown that while Rett Syndrome patients cannot verbally communicate, they are able to point to something, to understand a question and to communicate through their eyes.

This study examined nonverbal cognitive abilities and visual preferences by analyzing the pattern of visual fixation, using eye-gaze technology, in 49 girls with Rett Syndrome, compared with a group of typical control subjects. The girls with Rett Syndrome exhibited a preference for socially weighted stimuli, preferring to look at a face, in particular looking longer at the eyes of a person, than objects, which offers a new insight about their neurodevelopmental profile, their preferences and ability to process and discriminate visual stimuli. The results also demonstrate a striking difference between Rett Syndrome sufferers and children with autism who avoid social and eye contact, indicating that further research is needed to better understand the "hidden" thoughts and feelings of these girls.

Rett Syndrome is often confused with autism and girls suffering from the disorder are frequently grouped in the same educational classes. This presents a problem since girls with Rett Syndrome require a different teaching method, targeted to their specific communication capabilities and needs. The key difference between children with autism and Rett Syndrome is that girls with Rett show a preference for eye contact, whereas autistic children tend to avoid eye contact. Dr. Djukic believes the results of this study highlight the need for more comprehensive investigation, including direct comparisons of visual fixation patterns between girls with Rett Syndrome and children with autism. This study, which is one in a series, should be considered in future intervention strategies so that ultimately, girls with Rett can be treated specifically to suit their disorder with the goal of enhancing their communication capabilities.

Dr. Djukic and her team of 18 physicians specializing in Rett Syndrome provide state-of-the-art services for patients through intervention, education, and research. The Rett Syndrome Center at The Children's Hospital at Montefiore opened in January 2008 and treats 250 patients from all over America and as far afield as Pakistan, Italy, Cyprus, Argentina and Venezuela. Dr. Djukic has been recognized as a leader in her field with nearly 30 years' experience, she has devoted the last several years to conducting research to find cures and treatments for Rett Syndrome.

Source Montefiore Medical Center