Saturday, December 18, 2010

It's been a long December



Wow what a month!
So much has happened...financially,emotionally,psychologically. My head has been spinning.
No, we didn't come into money...don't we wish. But we did have some awesome things happen this month that helped us out tremendously.
We had a friend arrange for us to be able to go to the Premier Rett Syndrome Clinic in the country.
We had a Doctor donate her time and services to Abby. Not only did we receive awesome medical care for her we made a friend. A friend who cares and who just happens to be a Rett Syndrome Neurologist! How cool is that?
We have finally started Abby on the Anti Anxiety meds she needs. We are praying that they help her. She is still in the adjustment phase so please keep her in your prayers!
We had a Rett family open their home to strangers so they could receive the best care possible. Again I have made friends. Just 2 short days and I'm pretty sure this lady was somehow separated from me at birth...12 years later. What did she call it?..A brother from another mother. I love you Louise!
We found out that our Abby is in there! Of course I knew but after stomping my feet and stepping on toes for so long even I was beginning to think that it was just me..me being her Mom. Seeing things others never would as I had been told.
Having a child that was once mobile and normal and perfect..who could talk, play, play pretend, eat, feed herself....then have that all stolen in the night.. It is indescribable. Having sat in that office and having her prove that that brain of hers works just fine, that she can, she CAN talk with her eyes. One day we will get her brain to talk to her body again! Hopefully before this Rett Monster takes her from us. Like it has so many poor little Angels this year.
We discovered that we are making a difference. There are people all over the world that read my words,take my advice,use us for examples and watch and learn from Abby's videos. I had no idea and I'm thrilled that I can help from my little desk in the corner of my kitchen.
We had a couple from South Africa donate most of the funds needed to get Abby her iPad. We hope to purchase it soon after Christmas with gift cards she will receive from family. Thank you Cathy and family!
We had people step forward and provide Christmas for us without being asked and out of love. For this I am eternally grateful. Christmas is always such a high stress time of year and knowing that these people helped us because they care and they love us is amazing. I am not one to ever ask. I do not stand in line for vouchers or handouts and I never will. I somehow would have found a way...but it never even became an issue because of these folks. We love you too!!
This week we found out that a My Tobii rep will be flying in to try Abby on the device to get the ball rolling so she can communicate. These devices are beyond expensive and a huge battle with the schools and the insurance. We are ready. I can't imagine what it took to get someone to come here because there is no rep in the area. Someone pulled some major strings I'm sure. Thank you!
We are hoping to get the North Kansas City School District on board with this. They do admit that eye gaze technology is new to them. I'm hoping we can open doors for all children trapped in their bodies!
All our love
Terri and Abby

Tuesday, December 14, 2010

Our favorite Therapy!

Back to my recommendations for therapy for Rett Syndrome.

We have been doing Water Therapy with our OTR/L since Abby was in early intervention. When we transitioned out to the school district they did not provide it and Medicaid won't pay for it..go figure..so we decided to start doing this one out of pocket. We really felt it was too important to give up. We eventually found Autism funding that would pay for 2 sessions a month. Down from our once a week but we take what we can get.

Technically Water therapy is considered OT or Occupational therapy...before anyone bites my head off that's what I have been told. It may be categorized different for you in your area.

What we love about it is that it is so much more than that. Water therapy helps her with body awareness,balance,coordination. It is Physical therapy and Occupational therapy all rolled into one and she LOVES it!

They call our girls Silent Angels and anyone that knows my Abby knows her Silent is broken. She babbles,squeals and sings constantly in her own little language. I often have people ask if she had, "Swim today?" after the pool because her little mouth goes 90-nothing. She is so happy and so verbal.

I have 2 videos today. The first shows Abby doing OT in the water playing catch with a ball.



The second shows her PT part of the Therapy where she walks around the shallow end with weights on her legs. You can tell the awareness it gives her at the end by how fast she climbs the stairs with the weights on!

Wednesday, December 8, 2010

30 years ago this day

This picture was taken by Annie Lebowitz. December 8th 1980. The morning John Lennon was killed.
John Lennon

Genius

Feeling kind of old today remembering this day. Granted I was 10 years old the day Mark David Chapman shot John Lennon in cold blood. Just a few hours after he had politely asked for his autograph.

I will tell this story as I remember it. My mother and stepfather were in the living room watching a Loretta Lynn special on HBO. We were all pretty excited about this new thing called cable and the living room was the only room that had it. Me, my baby brother and 2 stepbrothers were watching The Carol Burnett Show in the stepbrothers bedroom sitting on the floor. A news anchor interrupted and reported that John Lennon had been shot 5 times in the back by a fan and had been pronounced dead. The anchor had tears in his eyes. It was a Monday.

I walked out into the living room to tell my parents...as they were watching HBO it was not interrupted so they did not know. My stepfather was a musician...and still is and had taught me to play Let It Be on the piano...still the only song I am able to play.

They asked me what I wanted and being 10 I said, "Someone shot John Lennon 5 times in the back. He's dead." My mother screamed and and asked me why I would say that as my stepfather hurried to change the channel. He was shaking so hard he couldn't function. They ran to the back bedroom to see the news on the boys tv. The one that we changed the channels with with a pair of needle nose pliers because the knob had fallen off.

The next few week were filled with stories of Lennon and the Beatles. Although we as kids knew The Beatles through the music in our home we had no idea at that time of the history and the impact.

The following weekend there was a memorial in a nearby park. I can remember driving there in our old, beat up truck. The kids always sat in the back of the truck...it was California after all.
The traffic for this event was something like trying to get into the Super Bowl. We lit candles, we sang songs and we went through tent after tent of memorials, pictures and memorabilia.

In the weeks and months after we learned the song Imagine and I remember it being the first time a song and lyrics meant anything to me. My parents bought me Double Fantasy and The Beatles White Album for my 11th birthday a month later.

John Lennons murder for me was the Generations before John F Kennedy. 30 years later I can still remember every detail. Of course now we know there was 5 shots. 4 hit but their were 7 wounds total.

The official recount of the story can be found by clicking HERE

Some of my favorite John Lennon Quotes and Song Lyrics.

A dream you dream alone is only a dream. A dream you dream together is reality.


All we are saying is give peace a chance.


All you need is love.


As usual, there is a great woman behind every idiot.


Everybody loves you when you're six foot in the ground.


Everything is clearer when you're in love.


Guilt for being rich, and guilt thinking that perhaps love and peace isn't enough and you have to go and get shot or something.


He didn't come out of my belly, but my God, I've made his bones, because I've attended to every meal, and how he sleeps, and the fact that he swims like a fish because I took him to the ocean. I'm so proud of all those things. But he is my biggest pride.


I believe in everything until it's disproved. So I believe in fairies, the myths, dragons. It all exists, even if it's in your mind. Who's to say that dreams and nightmares aren't as real as the here and now?


I don't believe in killing whatever the reason!


If everyone demanded peace instead of another television set, then there'd be peace.


If someone thinks that love and peace is a cliche that must have been left behind in the Sixties, that's his problem. Love and peace are eternal.


Imagine all the people living life in peace. You may say I'm a dreamer, but I'm not the only one. I hope someday you'll join us, and the world will be as one.


Life is what happens while you are busy making other plans.


Love is the answer, and you know that for sure; Love is a flower, you've got to let it grow.


Music is everybody's possession. It's only publishers who think that people own it.


My role in society, or any artist's or poet's role, is to try and express what we all feel. Not to tell people how to feel. Not as a preacher, not as a leader, but as a reflection of us all.


Reality leaves a lot to the imagination.

Surrealism had a great effect on me because then I realised that the imagery in my mind wasn't insanity. Surrealism to me is reality.


The more I see the less I know for sure.


There's nothing you can know that isn't known.


Time you enjoy wasting, was not wasted.


We've got this gift of love, but love is like a precious plant. You can't just accept it and leave it in the cupboard or just think it's going to get on by itself. You've got to keep watering it. You've got to really look after it and nurture it.


When you're drowning, you don't say 'I would be incredibly pleased if someone would have the foresight to notice me drowning and come and help me,' you just scream.

Tuesday, December 7, 2010

New York Pics

Here are our pics from New York..Or what I have so far. I plan on stealing some more from a new found friend when she gets home to Barbaddos!. Since I fail at loading in order this is all pretty much backwards. Us outside the Hospital after the visits
This ones for Orvin

No picture could do this tree at the Museum justice. Absolutely beautiful

Painting with my girl at the Museum

I loved this!


Lighting is horrible for pics but we got a copy of this printed to take home


Stunning

Evil but incredible

The statues were amazing

My favorite:)

82nd Street. We found a place to park right across from this for free. Beats paying 36.00 per hour!

Czech Flag

Bloomies as we flew by at high speed while playing Frogger!


I wish I could have taken a pic of this whole Building. Man that Old Broad was loaded!

Some Skyscraper.

The Metlife Building. That lower green topped building in front of it is also part of the Helmsley Building
Park Ave

See? Told ya!


Entering Harlem..which is actually before Park but I don't know how to load!

Best night view I got from Astoria before the near mugging

Monday, December 6, 2010

New York-Uh Wow!

As you know from the post below we went to New York this past weekend and Holy Smokes! Although I was nervous I had no idea what I was getting into!

I spent my childhood and late teenage years in LA and OC California so it's not like I've never been out of the pasture. I grew up in the 70's and 80's and always had this mindset that NY was full of mean,hateful people that were rude,selfish,obnoxious and self absorbed. This could not be further from the truth with what we experienced there.

It's not like I didn't run into any of it of it though. But the incidents were isolated.

When we stepped off the plane in through the gate at La Guarida a lady came right up to us and asked where we needed to go and escorted us to the curbside pick up.

Another RettMom picked us up at curbside and off we went. The one thing that wasn't exactly my favorite about New York was the traffic. Seriously, 24 hours a day it was like playing Extreme Frogger on PCP. No lanes, no turn signals. Absolute insanity on the roads and that was just in Queens.

We stopped in Astoria Park to get a view of the skyline and take a few pics..they really didn't turn out that great and I had only taken a few when a guy road past me on a bike and the hairs on the back of my neck stood up and Stefanie..the RettMom who hosted us yelled,"Get in the car!" He had dumped his bike and was coming towards me. I jumped in and we sped away. So besides the near mugging 10 minutes after I got there it wasn't all that bad!

We stayed up for a few hours and talked and laughed and became instant friends. What an awesome family to take in strangers like that. We had talked before on the Internet and on the phone but to take us in the way they did...forever grateful.

The next morning after about 4 hours sleep I stepped out on the front porch and was immediately greeted by the Sanitation worker with a ,"How you doin Sweetheart?" and a "You have a nice day there."

I'm suck a redneck that I ran in all excited because the Trashman said Hi. They got a good laugh at that one!

My girlfriend from High School that lives on Long Island soon arrived to be our personal assistant,caregiver and chauffeur for the day. She was a pro and I would have been lost without her. Thank you so much Kelley. I love you woman!

Yesterday you got the story from the hospital so I'll pick up from there. I was told that I couldn't come home without having a Hot Dog from a street vendor so I was hoping we could find one. Not a problem since there is about 3 on each side of the street on almost every block. So I had my first Dirty Water War Dog. I was starving. Gotta say not my favorite. I'll order differently next time. Onions on your dog here are onions. There they come in this tomato ketchup watery base. Kinda yukky.

Everyone on the street or sidewalk parted for the wheel chair and they opened doors for us. I don't even get that here. If you go into a place with a wheel chair you are escorted the moment you walk in the door. No questions, no eye rolling. I told my friend that I felt like a celebrity with the treatment we got.

The Metropolitan Museum of Art was next on our list. We didn't have time to go back to Queens so made plans to meet up with our host family at the Museum. We had about an hour and a half to spare so we took a little tour.

We drove through the Bronx and Harlem on our way to Manhattan and took a drive down Park Avenue,5th and Madison. There is no wonder people in New York walk so much. The people on the roads were INSANE and I'm pretty sure most of them couldn't have possibly ever taken a drivers test.

If the police actually ticketed every driver that didn't use a turn signal, cut someone off or every person that jay walked I'm pretty sure we could settle the National Deficit in a week or so. So not kidding.

We were treated to what is called Rett at the Met. An evening where Rett families get a private guided tour and dinner afterwards. We met families that I have talked to or seen pictures of for years. We were treated like royalty. That place was incredible. The way their staff attended to us was amazing and so personal. He saw so many things and if alone I would have spent the entire day there. We even saw Hugh Jackman! Pretty cool! If I could I would go there once a week if I lived in New York and disappear into light and art and color and history. Unforgettable! The only thing missing was my new found sister Stefanie who wasn't able to make it because her daughter was ill.

The next morning we had a flight out at 1120. I wanted to get there pretty early because I heard that LaGuardia was a nightmare. We woke up late and pretty much had to stuff bags with what would fit and haul butt to the airport. I was sure we were going to miss our plane and my stress level was through the roof!

When I lifted Abby out of the car and into her wheelchair a security guard met me at the curb and asked what airline. He then took us to the front of the line at the Frontier Airlines desk and they moved us to the front row immediately. The same guard then told us to follow him as he walked us through security to the front of the line. That line had to be 2 blocks long. Everyone parted and not one person said a thing. I was allowed to stay with my daughter while my bags went through and her chair was patted down. They were so careful and attentive with her. I on the other hand got the full patdown you've been hearing about on the news. They were gentle and kind about it but I had not gone through the xray so it was procedure. The security guard waited for us so he could escort us to our gate. He told the gate that we would need assistance on and off the plane and shook my hand and quietly walked away.

We were the first to board and the Stewardesses carried our bags, took care of the chair and asked if we were comfortable and had everything we needed before they let anyone else board. I was so shocked. This is the way people should be treated. Everywhere. I was amazed.

When we got off the plane they asked us to wait for others to deplane so as not to feel rushed. When we got off there were 3 people waiting from Frontier waiting. One with the chair and 2 to help with the bags and anything else we may have needed. When I put Abby in the chair I turned to get my bags to find the Pilot was holding all 4 of them for us. THE PILOT! He handed them to us with a smile and turned back to his plane. Incredible!

The people from Frontier escorted us clear out of the gate to the waiting are and asked if their was anything else we needed before they turned away. I will never fly another airline! Absolutely the best service ever!

And to top it all off. Someone else paid for our tickets with their airline miles. When the airline called to confirm because they were in someone elses names and heard our story they comped the tickets. Round trip, non stop and they comped them!

Thank you New York, The Metropolitan Museum of Art and Frontier Airlines for making this a trip we will never forget!

Sunday, December 5, 2010

Abby , Me and Reality

Wow what a weekend. Just be prepared that this post may go on forever.

Since March the Rett Monster has been rearing it's ugly head around here and we have been putting Abby through so many tests and procedures.

Her stomach was the first issue. Abby has some pretty severe GI issues that are common to Rett...The one thing I think we, as Rett parents hate to hear is that,"It's Rett.". We don't care if it's Rett. Fix it. Now! I think...no I really feel that if a girl has Rett so many things are poo'd off or ignored that could be dealt with and fixed. These are the same Dr's that diagnosed our daughters and tell us to take them home and make them comfortable. When we bring them back in they treat us as if we are bringing in that lame dog we picked up at the pound. We knew it would have problems. Why do we keep bothering them with this?

I will say that we don't get this from Abby's Pediatrician. Not at all. But we do get it from the specialists here. I think the Neuro knows Rett but is basically an Epilepsy doc. ER's,Ortho,Surgeons,GI's. just don't know Rett and between us and her Ped and a friend we came to the realization that she needed and the Pediatrician needed a Rett doctor for Abby.

In the last few months Abby had also started having sleep issues again, She was having tremors,night terrors,waking in the night. She was having severe pain and panic attacks during the day. I have always fought off any kind of neurological medicine or anxiety medicine for several reasons. First out of the fight I have in me that I can help her. I can fix it. I almost killed her with that when she stopped eating. I sometimes forget that I am fighting an invisible monster here. Rett Moms cant kiss the boo boo's and send them on their way. The hurt that comes from this is unimaginable for those who don't deal with it.

Her breathing issues needed to be addressed. The Apraxia that stops her from taking that next breath can be anxiety induced too and I needed to face that. Having to leave her at home or not being able to participate in any kind of life because it would be too stressful for her was letting Rett win and I can't do that anymore. I needed to get off my Homeopathic hippie bandwagon because I wasn't helping her and that is my ONLY mission in life.

Through a friend I was introduced to a Doctor in New York. Her name is Aleksandra Djukic. It started with my friend emailing her a question for me when a GI here put Abby on a Neuropathy med to help with her GI issues. Within a few days we had plans to come to New York to see her and the paperwork and record gathering began.

A few days before the appointment I sent Dr Djukic (Sasha) a link to this blog and Abby's videos. She sent a little note back that she had seen these videos before and couldn't wait to meet "The Princess"

I will save the what I think about New York blog for later but now on to Sasha.

To say this woman is amazing would be the understatement of the millennium. We were there about 15 seconds when she came rushing out to the waiting area to greet Abby. She talked to Abby, she hugged her, she kissed her. When we went back to the office she explained to us that she had been using Abby's videos in her lectures about how intelligent Rettgirls are for 2 years. She hadn't realized that this was the same child she was about to see until a few days before we arrived. I was stunned.

She explained Rett to us in a way that even I never actually understood. She explained treatment and the coming cure in a way that I never understood. Our cure is coming! I had always been skeptical. Hopeful but careful. It is coming!

She tested Abby on a My Tobii device. I had to put my face in the back of Abby's head so I didn't see anything that was going on until I got the video by email when I got home. My daughter is brilliant. Her brain works so much faster than I thought it did. Her memory and concentration and comprehension are there. Right there! I saw things that I think Sasha didn't even see. When she would put Dora on the screen and put a different picture up Abby would look where Dora was before...she is her favorite character. I could go on all day about this one. I have never really fought for something like a My Tobii before because they are so incredibly expensive and I am apprehensive about anything that I think she can't use or would fail at. Abby must have this device and the fight is on!

We decided to put Abby on an Anti Anxiety/Depression med. It's time. I myself have suffered from depression and anxiety since a child and I don't have Rett. Meds help and I should have realized that a long time ago. I have problems living in my own brain and body and I have a voice and a body that works! Imagine how my Abby must feel!

We doubled her Melatonin for sleep and may even triple it. Abby slept better last night than she has in 2 years.

We are taking her off Miralax and putting her on a gentle baby motility drug because Abby's little body obviously can't handle Miralax.

We are changing up her therapies. If I can't get more at school I will do it myself at home. Use it or loose it. Neurons that fire together grow together, branch and work!


Now for the pics. I could have done the standard few pics and a sentence blog but it would have never done this visit,this doctor and her hospital justice. I am forever grateful for everyone that made this happen!


Me and Abby outside of Montefiore Hospital. That's us to the left!




Meeting the best Rett Doctor in the world!


One posed pic and off to work!
Studly Mcmuffin pic walking with minimal assist!

Sasha is so proud of her Princess!
Wow! So happy! Off for a tour of Manhattan then dinner with friends and a tour of the Museum of Art!

Stay tuned!

Friday, November 26, 2010

Speech and Communication Therapy in Rett Syndrome

Speech and Communication therapy is sometimes a hard one for parents of children with Rett Syndrome to grasp.
I can remember my daughter being 3 years old and not understanding why speech therapy was necessary. She couldn't talk after all and more than likely wasn't going to be able to. Speech therapy isn't what you would think of. When I was a kid I had to go to speech therapy because my R's were W's. Water was Rater and Rain was Wain.
Speech therapy is more like Communication therapy. It's very easy to give up on your girl. Please don't. We practice at home as well as school. We have a book of choices for her to slap at as well as video flashcards,books and more.
Here are two videos taken about a year or so ago. I tried to take video of her the last few days and she absolutely will not cooperate if it is just me and her so I have to take a back seat role. You will have to pay attention to HOW your own daughter communicates. Abby will sometimes hit a picture right away..sometimes she looks at it at sometimes she will face point.
For you newbies I highly recommend you checking into literature by Linda Burkhart to understand your child.
You can find an excellent paper at RettGirl.org and clicking on Resources at the top. It will take you to a wealth of information.
Click on
Multi-Modal Communication Strategies for
Children Who have Rett Syndrome
Linda J. Burkhart


I sometimes struggled to believe my own child could communicate until I read this paper and it was like she was talking about my Abby. It's 10 pages long and you wont be able to put it down. I honestly believe no teacher or therapist should work with a Rett Girl without reading it. Here is page 1 only..

Adopt these Beliefs:
• Everyone Communicates
• Communication Begins with Intent
• Getting from Intent to Action is What is Difficult for Girls with Rett
Syndrome
• The result of the effort, must be worth the effort
Apraxia
• Girls with Rett Syndrome’s most profound disability is Apraxia or Dyspraxia
• Apraxia is the inability to carry out a cognitive intent - The child intends to
move a particular way, but the neurological signal doesn’t reliably get to the
right muscles to move them consistently
• Some motor skills remain intact - but only when triggered with an automatic
event that doesn’t require forethought or cortical intent. This can be
confusing and may be interpreted by others as stubbornness, because it
seems that the child can perform a task some of the time. However, the
harder the child tries, the harder it is for her to perform it on demand.
• Sometimes the child seems to need to move away before moving toward what
she intends. If you don’t wait for the child to finish the intent, it may
appear that she is rejecting or responding incorrectly, when in reality she
hasn’t finished her movement yet
• Delayed processing from intent to movement is typical for these girls
• Apraxia also affects muscles that control speech
• Apraxia affects other communication skills - including ability to use some
non-verbal social signals and sustained eye contact
• May make it difficult to maintain eye gaze and move eyes between a desired
object and a person who might be able to retrieve the object
• Waiting for a response with patient anticipation is critical to success. The
child learns which people will likely take the time to wait for her, so she can
decide if it is worth her effort
• Sometimes talking the girl through the motor movements and /or modeling
them can be helpful.
Linda J. Burkhart linda@Lindaburkhart.com http://www.Lburkhart.com p. 1

Enjoy the videos and let me know if you have any questions.

Reading and identifying



Colors and Shapes

Thursday, November 25, 2010

Thankful!

I have thought several times over the last few days that I should join the what am I thankful for bandwagon. Each day I read online tidbits about what people were thankful for. Sometimes they were honest thoughts and sometimes jabs at friends or family. I am going to try to express my honest thankful thoughts.
I am Thankful....
For Jesus Christ. For re-entering my life. Or should I say for me letting him back in because HE never truly left. I left him. When I married an Atheist almost 11 years ago I put Jesus on the back burner and kept my faith silent. I didn't read my bible except to look up specific passages when sent to me by every day believers and when I silently prayed at night. Never thanking him. Just asking for what I wanted or needed.
When Abby..oh crap gonna cry..left us..when she became trapped in her own body I prayed,begged,pleaded,promised and more with my Lord. I knew no where else to go. When Abby continued to deteriorate I prayed and begged for a miracle that never came. When Abby was diagnosed I felt abandoned by the God whom I had abandoned years before.
In the fall of last year I found a church..actually my son found it. It is a very small congregation but the largest of heart. I was nervous about taking Abby to church. I was afraid of the looks,stares,whispers. We got none of that. They embraced us whole heartedly and more than I thought was possible. They smile when my daughter is yelling and laughing during the sermon. We get an Amen when she blows raspberries during prayer.
A few months after we joined they started reading this blog. They knew we were struggling and offered to help. When I told them no they told me no and built my daughter a bed. When she is being too loud and I try to take her out the Pastor will stop his sermon to tell us to sit back down. This church and the people there have saved me this past year and I look forward to nothing more each week than Sunday.
I am Thankful for my fellow Rett Parents. What an absolutely incredible community the Rett Syndrome world is. Not a family you would wish anyone to ever become a part of but the most loving nonetheless.
Rett Syndrome families answer the phone in the middle of the night because you cant breath and will pace their own kitchens when your daughter is sick. Rett Families never throw away clothes or supplies without offering them to other children who are going without or may need them. Rett families open their homes to strangers coming to town to seek treatment for their kids rather than have you stay in a town you don't know by yourself and ask nothing in return. They call and email doctors in the middle of the night with questions for parents that are too afraid to do it themselves. They buy airline tickets for people who have never shared a cup tea..all to try to relieve any burden a fellow family is going through. We all do it. They all do it. It is incredible and I don't know that I could exist without them.
I am Thankful for the doctors office who hired a special coordinator so the Special Needs parents can have a person to call directly when they need anything or have any concern. I know I personally terrorize this poor woman and don't know how she puts up with any of us but she does and she does it with so much love..Thanks CB!
I am Thankful for the neighbor who gave us his parking space so we could park on the end last week so we could more easily get Abby in and out of the van.
I am Thankful for the friend who called on Monday to tell me something her cousin did. We laughed at this poor woman's expense until we couldn't breath...its OK though..she would of been laughing too if she was with us. I mentioned that I was sick of turkey but still needed to go to the store. She and her 80 year old mother showed up a bit later that evening with a spiral ham and all the fixins. Just so I wouldn't have to back out..and because she loves us. So many people in our lives..friends and family have just stepped away because they don't know what to do or say. Or because or lives and our situation make them uncomfortable. Maybe because they get sick of hearing it. It doesn't take much. We don't want your money or your pity. A hug, a dinner, a movie..the same things we wanted before...we don't have cooties. We are not boring. I may not have any idea how to have a political conversation anymore. I know next to nothing about current events. But I'm still me and we're still us. I'm thankful for the people who haven't forgotten that.
I am Thankful for my children. I am Thankful for my son who is paying me back for being a teenager. As much grief as he gives me..and he does..I was a bad kid. He's lippy,overly opinionated, inconsiderate and rude. I was double all these things and a true teenager of the 80's and I thank God that he is smart enough not to do the things I did or hang out with the kind of people I did. I may complain about him but it could be worse. He could have mirrored me and for that I dont think I could recover. I am Thankful that when he thinks Im not around I hear him say things to his friends like, "Dude my Moms the S..T. She's like my best friend." And I quote
I am Thankful for my daughter. This little special girl has taught me more about love,heart,hurt,innocense and God than I ever thought possible. Always a smile. So full of love and so very happy in a body that doesnt work and a brain she cant control. She's happy. She is Love. Why should I complain about anything ever when I look into that little face and my own eyes stare back at me with the biggest smile. Every time. I think she pretty much thinks I'm the S..t too.
I am thankful for so many things....
I am blessed.

Saturday, November 20, 2010

The Importance of Therapies in Rett Syndrome

I know that there are many new parents that read our blog. What I mean by new parents are the parents of newly diagnosed girls. Because we had no where to go and almost no personal, from a parents point of view when we were diagnosed I occasionally like to put out informative information in between all my whining and bragging.

I just cringe when I think of the info that was out there for us not so long ago and it was all very doom and gloom and no happiness or future to it. I have been told several times that Abby is incredible as far as Rett Syndrome girls go. I truly believe it is because of my persistence and sometimes annoyance to her docs,caregivers and therapists. I have always had the move it or lose it attitude when it comes to Rett Syndrome and I totally still believe that.

I have,over the last 4 years met many many families and many many girls and I can tell you that Rett Syndrome hits every girl differently. I have met wonderful little girls who's bodies just won't work for them at all. I have met girls who walk,talk,run and have conversations while wringing their tiny hands. These girls are few and far between and mine is not one of them.

Early,very early, in our diagnosis I had one of the wisest and most experienced RettMoms there are tell me, and I quote,"Don't spend her entire life in therapies trying to fix her because it just won't work. Let her enjoy what life she has." Love ya lady but Bullcrap! Some of Abby's favorite things to do in the world are therapies and with the therapy through play attitude that everyone has taken on it is not as much work as it used to be. So I am going to go over the recommended therapies for Rett Syndrome. How we do those therapies and I am going to try very hard to get as much video as I can on each in the next few weeks. Abby's school doesn't allow video taken in her school so for those therapies I may take new video or use some we already have.

The Importance of Therapies in Rett Syndrome Repetitive therapies help dendrites form more connections with other neurons (neuronal plasticity) In Dr. Djukic's words, "Neurons that fire together wire together." Therapies that have been demonstrated to help individuals to access their environment include:
Occupational therapy
Physical therapy
Hippotherapy
Aquatherapy
Music therapy
Communication therapy
Speech therapy
Applied behavioral therapy

Therapies help neurons to create new connections . New connections help to increase motor skills. Coordination, balance, and motivation to try new tasks are proven benefits. Therapies contribute to an enriched environment for individuals with Rett syndrome No loss may be progress - Therapies stimulate the neurons and they are helpful. Unfortunately, when girls are in transition and struggling with multiple physical issues, progress is hard to see. Goals are not met, and services are lost. It is important to help other professionals understand the dynamics of the syndrome and the need to keep moving and stimulating. Proper instruction and a plan between teacher, doctors, and treating therapists are valuable.

So here we are. Words from one of the best Rett Neurologists in America. Today I will start with Hippotherapy. Don't let the name fool you. She doesn't play with or ride Hippos and I would be too busy having a heart attack to video it for you if she did. Hippotherapy is Horseback Therapy. Many will try to influence you not to do this one and I can tell you that it is the most valuable thing we have in our arsenal as far as regaining balance,trunk control and strengthening her core muscles. Many many areas have programs that are free of charge for the disabled or a local Horse association that will split the costs with the family. Ours charges $40.00 a session and a local Horse Association (The American Royal) pays for half of that. So for a 6 week session we pay $120.00 When we first started Hippotherapy I was so scared for her because I am the biggest chicken in the world when it comes to horses. They absolutely terrify me and I have only been on a horse twice in 40 years. Enough for me. The first few times Abby got on she would not even hold herself up on the horse so they would ride with her laying on her back or laying on her stomach. By the 4th week she was sitting up on her own.

What does Hippotherapy do? Hippotherapy is a treatment that uses the multidimensional movement of the horse; from the Greek word "hippos" which means horse. Specially trained physical, occupational and speech therapists use this medical treatment for clients who have movement dysfunction. Historically, the therapeutic benefits of the horse were recognized as early as 460 BC. The use of the horse as therapy evolved throughout Europe, the United States and Canada. Hippotherapy uses activities on the horse that are meaningful to the client. Treatment takes place in a controlled environment where graded sensory input can elicit appropriate adaptive responses from the client. Specific riding skills are not taught (as in therapeutic riding), but rather a foundation is established to improve neurological function and sensory processing. This foundation can then be generalized to a wide range of daily activities. Why the Horse? The horse's walk provides sensory input through movement which is variable, rhythmic and repetitive. The resultant movement responses in the client are similar to human movement patterns of the pelvis while walking. The variability of the horse's gait enables the therapist to grade the degree of sensory input to the client, then use this movement in combination with other clinical treatments to achieve desired results. Clients respond enthusiastically to this enjoyable learning experience in a natural setting. Physically, hippotherapy can improve balance, posture, mobility and function. Hippotherapy may also affect psychological, cognitive, behavioral and communication functions for clients of all ages. Clients who may benefit from hippotherapy can have a variety of diagnoses: examples include Cerebral Palsy, Multiple Sclerosis, Developmental Delay, Traumatic Brain Injury, Stroke, Autism and Learning or Language Disabilities. However, hippotherapy is not for every client. Each potential client must be evaluated on an individual basis by specially trained health professionals.

So the video..I don't have great video but I do have some so here ya go..Here she is last Thursday winning an egg race. There is ALWAYS a person on each side and another leading the horse.


Friday, November 19, 2010

Oh boy. All shame and pride aside!



Abby needs an iPAD. Seriously. I have been hearing for months how awesome these devices are and how much simpler they are to use with a child with disabilities such as Abby's.

Apple now has so many incredible features and apps this one little device can help her communicate,play games, movies and entertain her for hours...anywhere we go.
We've never..or I guess I've never been any good at raising funds for anything. Lately on facebook I have noticed that parents will get on there and say..Mary needs this and boom they have a grand in an hour. We don't need a grand. We just really want an iPAD for her. Right now the 16G is on sale for an unheard of $499.00. I imagine this will last until Christmas

So, I dont know if this will work or how many people actually read my blog but...ABBY needs an iPAD. Weather it be donations..ouch..pride..ouch or if someone knows companies or people that will let us make payments. Please let us know! Are there resources out there we don't know about?

You can donate to the iPAD fund by clicking the donate button on the right panel or contact me directly with info at vejrfam@yahoo.com.

Ok Im gonna go swallow my pride and hope for the best and pray that I dont get back on here in 5 minutes and delete this post out of it!

iPAD at Walmart

Saturday, November 13, 2010

Pretty Princess...with a tude!


See that pretty little angelic face above?...Don't let her fool ya. This child is as Jekyl and Hyde as they come. And she knows it!
Her Daddy spent the day with us..Doesn't happen often. He gets called into work for at least one day every time he has 2 days off in a row. He finally got to experience her 0-60 fits in full action.
This morning Daddy opened his laptop...must be nice I might add. Mines been broke for a year. Anyways..his mother was on Skype. My mother in law lives in the Czech Republic, speaks next to no English and we haven't seen her since shortly after Abby's diagnosis.
I wish I could of got video of Abby's performance. She was all smiles, giggles and even talked back to her. It's possible Abby can speak Czech. Her language and theirs seem awful close. Either way I cant understand either. So glad Abby was in a good mood cause we needed to go shopping.
I needed to take Abby to get new shoes..not my favorite activity. Her Daddy needed shoes for a wedding and tried to get me to just bring him home some. Nice try Dad!
Abby started her I hate shoes, and you and everyone in here as soon as we parked her in the isle. Dad tried to hide in the men's section while we cleared out the store with the full on hissy fit while we tried on 6 different pairs. Well, almost a clear out. There was that poor little girl and her mother in the same isle. The mother was mortified because her daughter was frozen in her stare. I'm pretty sure she had never seen anyone quite like Abby before. Doesn't bother me when kids do it. Not at all. I really wish I was the kind of person that would just order the expensive online shoes made to fit over braces but shoes is just one thing I will not shop for online. You can't try them on people!
We then headed off to the Target store next door. Abby was fine as soon as we got there. It really is a shoe thing with her. While I was browsing the really cool cheap stuff for a dollar section Abby started to babble and sing."Woo woo ya ya yaluccsbooga gack" A woman asked me how old she was. I have found that is the new is she special or 2 question. I told her she was 6 and she said..."Such a gift. You are so truly blessed."
Seriously? Obviously she had not just been in the Payless because I was feeling a little less than blessed at that moment. Please come back! I wanna bless you too! Wanna babysit? Yah didn't think so. Have you seen her Dad? I'm pretty sure he's curled up in a ball somewhere plotting his escape from any further shopping!
I look down at my little blessing and she's smiling..big blue eyes
Jekyl and Hyde

Friday, November 12, 2010

Modeling autism in a dish

LA JOLLA, CA—A collaborative effort between researchers at the Salk Institute for Biological Studies and the University of California, San Diego, successfully used human induced pluripotent stem (iPS) cells derived from patients with Rett syndrome to replicate autism in the lab and study the molecular pathogenesis of the disease.
Their findings, published in the Nov. 12, 2010, issue of Cell, revealed disease-specific cellular defects, such as fewer functional connections between Rett neurons, and demonstrated that these symptoms are reversible, raising the hope that, one day, autism maybe turn into a treatable condition.

"Mental disease and particularly autism still carry the stigma of bad parenting," says lead author Alysson Muotri, Ph.D., an assistant professor in the Department of Molecular and Cellular Medicine at the University of California, San Diego School of Medicine. "We show very clearly that autism is a biological disease that is caused by a developmental defect directly affecting brain cells."

Rett syndrome is the most physically disabling of the autism spectrum disorders. Primarily affecting girls, the symptoms of Rett syndrome often become apparent just after they have learned to walk and say a few words. Then, the seemingly normal development slows down and eventually the infants regress, loosing speech and motor skills, developing stereotypical movements and autistic characteristics.


Human induced pluripotent stem (iPS) cells derived from patients with Rett syndrome allow researchers to replicate autism in the lab and study the molecular pathogenesis of the disease.


Almost all cases of the disease are caused by a single mutation in the MeCP2 gene, which is involved in the regulation of global gene expression, leading to a host of symptoms that can vary widely in their severity.

"Rett syndrome is sometimes considered a 'Rosetta Stone' that can help us to understand other developmental neurological disorders since it shares genetic links with other conditions such as autism and schizophrenia," says first author Carol Marchetto, Ph.D., a postdoctoral researcher in the Laboratory of Genetics at the Salk Institute.

In the past, scientists had been limited to study the brains of people with autistic spectrum disorders via imaging technologies or postmortem brain tissues. Now, the ability to obtain iPS cells from patients' skin cells, which can be encouraged to develop into the cell type damaged by the disease gives scientists an unprecedented view of autism.

"It is quite amazing that we can recapitulate a psychiatric disease in a Petri Dish," says lead author Fred Gage, Ph.D., a professor in the Salk's Laboratory of Genetics and holder of the Vi and John Adler Chair for Research on Age-Related Neurodegenerative Diseases. "Being able to study Rett neurons in a dish allows us to identify subtle alterations in the functionality of the neuronal circuitry that we never had access to before."

Marchetto started with skin biopsies taken from four patients carrying four different mutations in the MeCP2 gene and a healthy control. By exposing the skin cells to four reprogramming factors, she turned back the clock, triggering the cells to look and act like embryonic stem cells. Known at this point as induced pluripotent stem cells, the Rett-derived cells were indistinguishable from their normal counterparts.

It was only after she had patiently coaxed the iPS cells to develop into fully functioning neurons—a process that can take up to several months—that she was able to discern differences between the two. Neurons carrying the MeCP2 mutations had smaller cell bodies, a reduced number of synapses and dendritic spines, specialized structures that enable cell-cell communication, as well as electrophysical defects, indicating that things start to go wrong early in development.

Since insulin-like growth factor 1 (IGF-1)—a hormone which, among other things, has a role in regulating cell growth and neuronal development—was able to reverse some of the symptoms of Rett syndrome in a mouse model of disease, the Salk researchers tested whether IGF-1 could restore proper function to human Rett neurons grown in culture.

"IGF-1 treatment increased the number of synapses and spines reverting the neuronal phenotype closer to normal," says Gage. "This suggests that the autistic phenotype is not permanent and could be, at least partially, reversible."

Muotri is particularly excited about the prospect of finding a drug treatment for Rett syndrome and other forms of autism: "We now know that we can use disease-specific iPS cells to recreate mental disorders and start looking for new drugs based on measurable molecular defects."



Modeling autism in a dish


Neurons generated from Rett-iPS cells form fewer synapses, the specialized signal transmission points between brain cells. Synapses are shown in red and dendrites, which function as signal receivers, are shown in green.
(Photo Credit: Image: Courtesy of Dr. Carol Marchetto, Salk Institute for Biological Studies.)
Source: Salk Institute

Thursday, November 11, 2010

A day in the life of a RettMom.

A few years ago another Mom posted a 'What it's like blog' on Myspace and I remember thinking things weren't so bad for us and I felt bad for her. Abby slept through the night. She walked, she ran. She could still sign and had a few words. She was eating like a frat boy. I thanked my lucky stars that Rett Syndrome didn't hit us like it did other girls...little did I know what was coming. I had no idea that sometimes it takes years for everything to hit.

Most days there is so much that I can't remember it. I have been thinking about this post for days and the last few have been a pretty much the norm. So this is for all of my husbands friends who complain that I don't work. For my family who spends hundreds of dollars a week at restaurants and invites everyone but me and my daughter. For those who blame my laziness on our generic toilet paper and meals cooked in bulk and eaten till their gone. Usually consisting of a hamburger or tuna concoction. Man I hate hamburger and tuna!

Tuesday 230 pm. I pick up Abby from school early to go get labs done. We are finally checking EVERYTHING to try to make her as comfortable as possible in her little body that does nothing she wants it to. Looking for any chemical reason she vomits, gets impacted,and or has constant diarrhea. Anything that can help us get her on the right meds so she stops having her tremors and stops breathing. Yes stops breathing.

Earlier this year they discovered.."they" being the medical world..that Rettgirls don't hold their breath because they can. They're brains are actually not telling them to take that next breath in order. For Abby this happens about 5 times a minute. 5 X 60 is 300. 300 X 13 hours a day that she is awake is 3900 times per day. Not to count the apnea she has in her sleep. Usually about 130-160 minutes of non breathing over a 9 hour period. Is it no wonder I do not sleep?
At the doctors office we bag her..I will not catheterize my daughter unless there is a dire need. Never again. We wait for an hour for her to go.

We take that sample to the hospital lab where we wait for and hour and a half to get called back. When we finally do the tech fishes for veins until I stop the process. She obviously doesn't know what she's doing and my daughter is not a pin cushion.

By this time Abby has missed her afternoon tube feeding and is hysterical with hunger so she screams at me all the way home in her language that only she understands and I cry right along with her.

I get her home and put her in her chair for her feeding. After I have plugged the tube into her stomach I take a few minutes to tell her father about the day. When I go back to sit with her during her feeding..to make sure she doesn't vomit or retch and aspirate she is slumped down, head on her chest..snoring. 3 hours before her normal bed time. I too am exhausted but I have to wait another 3 hours before I can give her her night time meds. So I turn on the monitor and go about doing all my household responsibilities and preparing her school bag and meds for later that night and first thing in the morning.

At her normal bed time I give her her 3 meds and accidentally wake her up. Oh man I didn't mean to. Now it's party time. She's had a nap and is so thrilled to see me. She kicks her six year old legs like an infant while constantly gnawing on her folded, bent and clasped hands. Giggling away. Happy as she can be and wide awake.

I finally get her back down about 1am. Deciding that I will not send her to school the next day on no sleep and that we will go back to the lab to try again. I sit on her floor with my back against her dresser, knobs hitting me in the back till I hear her breathing evenly and waiting for her little hands to stop moving so I know she is actually asleep.

I wake up 2 hours later. Sideways on her floor because she is whining and whimpering. It's cold and she has kicked her blanket off. Since she can't use her hands she cannot reach down and pull it back up. I crawl to my feet and tuck her back in and kiss her pretty little head.

2 hours go by and the blankets are off again. She is crying and cussing me in her own little language. Now her bed is wet. 5 am. No way that I can change her and her bed at this time without her fully waking up so her and I head off to my bed after a quick change of diaper and pajamas and a foaming bath in a pump wipe down. We don't wake her father. He doesn't even try to sleep in our room anymore. He's down on the couch in the living room.

Ok 530. I can still get a few hours of sleep before the labs start all over again. Think again!
Abby's 18 year old brothers alarms start going off at 6 am in the room next to us. He has 5 alarms that go off because he is IMPOSSIBLE to wake up in the morning and is so close to getting dropped for chronic tardiness and absences that we have to make sure he misses not even one more day. Not one more class or he will not graduate.

By 630 she is up. Smiling at me and licking my face-her way of kissing me. She is trying to raise herself up and is in full party mode. Ecstatic that she is in bed with Mommy and ready to start her day.

I turn on the TV for her while I change her bedding and run her bath. Hoping her brother has left us some hot water. Careful not to start the washer until I have her cleaned up.

I carry her to the bathroom..sideways because our bathroom was apparently built for no more than one tiny little pixie person to be in at a time and lower her into the tub..carefully as to not pull my back out again.

I take her back into my room so to not lay her down on her cold plastic hospital bed mattress and dry and dress her. She smiles at me while I take 20 minutes to wrestle her into her clothes,braces and shoes with no help from her. She can only lay there and smile.

I take her downstairs. One step at a time. She is 4 feet tall and 44 pounds of hanging weight. I turn on Nick Jr and start the feed and medicate process once again. An hour later we are off to the hospital . Ont he way there I steal a glance in the mirror and realize I look like something from the movie The Ring. I run my fingers through my hair and grab a baby wipe out of her bag to wash my face.

At the hospital we sign in and lucky us no one can find the paperwork from the afternoon before. The other tech had said she would leave it and all the counted and tagged tubes in a bag for the morning tech. No one can find them. So we wait for 2 hours in the waiting room. Annoyed,exhausted. At least I am. Abby's happy as a clam singing and screaming for what she thinks is people all there to listen to her scream, giggle and break into hysterics. At least it's happy hysterics this time.

The check in lady can tell that I'm about to lose it..she can tell because she knows us by face and name. Not because we are friends but because she has seen us so many times.
She finally goes and gets the tech and they take us back to the lab and sit us in the strap down chair. After stupid me has carried Abby all the way through because I left her wheelchair in the car thinking we would be in and out. You'd think I would have learned by now. My back is killing me at this point.

So we sit as she leaves the room for half an hour because she has to retype all the labels for the 9 tubes of blood they are about to take from my daughter. Luckily she hits the vein the first time and it is over with quickly. I watch Abby's face to make sure she doesn't go pale or pass out.

Yeah we're done! I carry Abby back through the hospital and out to our 12 year old van and lean her up, pinning her between my leg and the van while I catch my breath before I lift her up into her car seat. Again with no help from her. I am so exhausted and fed up by then I just want to pull over and cry...or pass out. But I can't because I'm smiling and laughing so hard. Abby has the hiccups. With each jump of her chest and squeak from her mouth she bursts into uncontrollable laughter.

I love that girl.

I drive us home and get her settled on the couch while I grab a sandwich. It's 230 and the first time I've eaten since the afternoon before.

24 hours in a day in my life. How was yours?

Tuesday, November 9, 2010

Don't Quit



When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don't you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow.

Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor's cup,
And he learned too late when the night slipped down,
How close he was to the golden crown.

Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit.

- Author unknown

Saturday, November 6, 2010

Clusterbagaggled


Hey there everyone.
Sometime in the last few days I have decided that I am too addicted to my computer and Cyberworld.
Now I know I am not the Lone Ranger on this one but I may seriously have a problem. It's not entirely my fault though. Like most things I blame it on my husband and my situation as it were.
Don't believe me? In between my Abby duties,my charity work and bathing I do almost nothing else.
When I get up in the morning I turn on the computer before I hit the coffee pot. While it brews I check my email, flag anything I have to enter or answer that day then I'm off to Facebook.
Facebook and the people who created it should be in prison. It is not politics or the economy that has been the downfall of this country. It's Facebook.
When my daughter was in the hospital Yahoo and Hotmail were blocked but I could get on Facebook all day long..and so could the people taking care of her. I can't count on my fingers and toes how many times I went out to the nurses station to ask a question only to find the nurse at the desk minimizing her Facebook page after she heard me. It wasn't one nurse either. It was someone, every shift.
Companies in Great Britain actually allow Facebook time to keep there employees happy. It's a perk. Seriously?!
Personally I know there is no way I could live with myself If I didn't go to my status updates and let everyone I know know that I care that they just got their hair done or that a dog pooped in their yard. People I couldn't identify if they were standing in front of me right now. If I get on and mention that something is wrong..I'm sad,mad, hurt..and Gosh forbid someone or the right people don't reply..I am crushed..lonely..feel like nobody cares. How completely pathetic is that?
Facebook is entertaining though. Watching people fight. Watching the love fests between people who don't know each other. Watching the few paranoid schizophrenics who think everything is a conspiracy and everyone is out to get them or stabbing them in the back. People tell anyone and everyone everything then get pissy that everyone knows everything about them. Fingers crossed I don't get 20 emails asking if this particular subject was about them. That happens a lot. I'll get a call or emails almost every time I post anything that includes the terms someone,or somebody.
My favorites(not) are the one that posts pics and videos to YouTube then go psycho when they see them somewhere else online. Seriously people. It's called terms and conditions and account settings. Look into it.
Some of my best friends in the world I met online. That one wasn't my fault either. The first thing the doctor said when he told me my daughter had Rett Syndrome was that I would have to get online and find other families and they would be my lifeline..if I only knew.
In March I went to Chicago and stayed with a woman who I met on Facebook. Her son was so freaked out that she was actually letting someone she didn't know into their home he was just beside himself.
In July I made my second trip to the West Coast to spend a week with people I met online. I work for a charity ran by people I met online and started by a woman I've never met in person.
My friends and family don't send me neat little items for my daughter or gift boxes with stuff they have multitudes or extra's of. My Facebook friends do though.
So sometime this week I start looking around my house. I kinda had to since I was falling over stuff. It was then I decided I was going to clean and organize one room a day. 3 or 4 days later Ive gone through one pile of mail. I did bring up my file cabinet. If I happen to get off my computer long enough to sort ALL my piles of paper I may actually put them in some kind of order. More then likely they will end up in one big pile on top of the cabinet.
It's Saturday. Today I vacuumed. I took apart my air purifier and cleaned it. After I made a new pile of cleaning products from under the cabinet that should be stored in other various places in my clusterfudge of a house.
So I'm not a housekeeper. Never have been, I do know where everything is though. Want some paperclips? They're under the toilet paper on my desk in my bedroom. We have to hide toilet paper and ration it around here. I think my son may be taking it into the nearby woods and building some sort of fortress with it and his missing socks. I bet you could see the place from space!
So I sit here..on my computer..talking to no one..careful to turn to the left when I get off because if I move the chair to the right I might cause an avalanche that could possibly take out the North end of my home.
Time to check Facebook.....so I can sleep with a clear concious...

Monday, November 1, 2010

Ten things not to say....

Today I am going to do something new. I have often read other blogs who have had guest bloggers and I have thought about it but never really got around to it until I read this blog this weekend.
Special needs parents share this unexplainable...thing. We get it when no one else does and we care about people going through the same things as we do.
Every once in a while you come across something where you read it and think.."Wow I could have written that myself." because you have felt or experienced the same thing.
This Mom puts it into words everyone should live by..Meet Andrea and her daughter Abigail.. Life at Mannchester Estate

Ten things not to say.
I am the mother of a child with special needs. I talk to other parents of children with special needs. There seems to be an epidemic of sorts. A worldwide issue of things being said to parents about their special needs children; and not just general things. Things that should not be asked or said; especially in the presence of their child.
I will start with a few small lessons. When you meet a family, and they have a special needs child, assume the child can understand everything you are saying. Address the child if you want to know how they are. Think about what you are saying about them, and in front of them. Chances are, even if you think a child appears to have a profound disability and can't understand you, that they can.
Secondly do not refer to them as retarded. Never ever. Don't joke about someone being retarded, something being retarded and so forth. The word is hurtful, especially when it has, or will be used as a word to make fun of the child. And with that remember from this post that it is best received to use people first language. They are a person with a disability; not a disabled person.
With all of that layed out there this list below was a collaboration of my friend over at The MacDonald Family and I. They have a beautiful little girl with a disorder called Rett syndrome. I have enjoyed reading about her perspective, seeing her incredible faith, and the kind and encouraging words she has spoken to a mama who still feels a bit like a rookie wading through some of the special needs stuff.


Ten things NOT to say to a parent of a special needs child.


1."What is her life expectancy? Is she going to die from it? What is the prognosis?"
This question is one that is hurtful. Even parents who have a child with a fatal disorder aren't usually up for discussing their child's looming death with complete strangers. It also takes away the joy that we work each day to find in our lives.

2. "What's wrong with her?"
Perhaps this is more semantics, but I can think of about one hundred other things you could say that would feel kinder. Whether a child has something obvious like down syndrome, or just some devices that you've never seen before and are curious about, find another way to phrase your question. What does that device help with? What is his diagnoses? Can I ask about your child's special needs? Because, as a mama I don't feel like anything is "wrong" with my daughter. She is a normal child who just deals with things that aren't typical.

3. "If you had known would you have had an abortion/adopted her?"
I feel like this one is painfully obvious. But is has been asked of me (I wrote about it here in my what not to say to adopted parents post). And yes, my friends with biological children with special needs have been asked if they would have aborted. Don't say this. It's rude, unkind, and unthoughtful. It doesn't matter what the choice would have been, because our child is here with us now and we believe their life has value.

4. "I knew someone else who had that, and they were severely disfigured/died from it."
I have NO idea why our society is obsessed with horror stories. Someone is about to get married, have a baby, adopt a baby, buy a car, whatever; so people surround them with stories of the worst things that could ever happen. It's NOT HELPFUL. As a mother, I have gone through every worst case scenario there is. So if you want to tell me an encouraging story about it, or say something kind and uplifting, by all means. I don't need help worrying about my child's future.

5. "God only gives those children to special people."
This goes against what I feel like is the character of God (i.e. He did not want my child to have a genetic disorder). It's also untrue. In the child welfare system in the united states 30-60% of children have been estimated to have chronic health conditions. When you add in behavioral, emotional, and developmental issues, the number increases to 80%. The estimation for the general population of children with special needs is 12.8%. (Source.) Some of this is because dealing with special needs can be financially, physically, and emotionally draining. It could easily cause people to lash out at their children, especially those who are higher need. However it does also show that not all parents who have children with special needs are great at it.

6. "Whispering, Staring, Shushing, and quickly moving away."
These things are hurtful. Although I am writing a list of things I don't want you to say, I am okay with questions. Especially from children. That's how they learn. When you shush them or move them away you teach them to be uncomfortable with people who are different than they are. And when you do these things, you show me that you are uncomfortable with my child. My child is like yours in lots of ways. She is not scary. Treat her the same way you would a typical child.

7. "Those kids are always so...(happy, fun, compassionate)."
Maybe living a life surrounded by therapist, doctors appointments, and procedures makes children with special needs more compassionate. But not every child with down syndrome is always happy. Not every childhood cancer survivor grows up being empathetic. My child's diagnoses does not define personality. It's similar to believing all men, all women, or all of a specific ethnic, religious group, and so on, are the same. They aren't. My child's personality is unique. So are all of the other people who I have met with NF.

8. "I know all about ____ and here is what I know."
When my nephew was diagnosed with cerebral palsy a woman I worked with told me that if I had children they could have it too. When I politely stated it wasn't genetic, she argued with me. I walked away knowing that cerebral palsy is brain damage that can result from numerous different things. It is not genetic. It's nice to meet people who know about the disorder your child has; especially if it is something rare. However, don't ever argue with a parent about their child's disorder. I guarantee you they have spent weeks of their lives researching, reading, talking to doctors, and sharing with other parents. They know more about it than you do. And even if you are right, it's okay to give that parent a break from all of the know-it-alls in the world.

9. "You know what you should do..."
I can not count the number of people who have boldly stated the way to cure my child. Natural this that and the other, surgery, drinking so much water every day. Really, because of the eight specialist we see, none of them seem to know the cure. But average Joe out on the street has the cure that the doctors have yet to discover.
I will agree that there are often natural things that can help situations; foods to avoid, foods to eat, vitamins, and other things. I have a feeling though that if I did what everyone told me, I could end up losing custody of my child for neglecting her health needs.

10. "She looks normal. You can't even really tell there's anything wrong with her."
This one makes me want to respond with, "And you seem intelligent." I don't know if people are trying to make me feel better. Of course my child looks normal. Of course my child is beautiful. You don't have to convince me of that. But you telling me that you can't look at her and tell anything feels sort of like a trite answer of "Well at least you have that going for you. She can pass as normal." That doesn't help me to feel better, even if it makes you feel better.


This is the list for you. There are other things more specific to each child that people say as well. So please try to think before you speak. Think about how you would feel if that was your child. Think about whether you are close enough to the person for that to be an appropriate question. There are a few things on this list that our closest friends have asked, and know the answers to. They also know when all of our appointments are, how we are doing emotionally, and not to say things in front of our daughter.
And lastly, I have never begged for more readership before. But PLEASE share this. Post it on facebook, send it by e-mail. Post a link from your blog. Contribute your questions you don't like asked in the comments. Just do whatever you can so that as many people as possible can read this and become better informed.

Excited to see what you have to say,

Tuesday, October 26, 2010

4 years ago today

My baby. Eating a phone and wearing the bonnet she put on herselfHer first biter biscuit. What a mess. Took her and the chair to the shower afterwards.Chubby lil Monkey with toys in each handDestroying my living room as usualCaught her kissing herself in my Tiffany Mirror. Got this shot when she looked up at me. PricelessFeeding herself. The night before Rett came in the night and stole herThat day. Took this pic because we couldn't figure out why she was so blank and wouldn't stop messing with her fingers2 days before they told us Last year. Beautiful. My entire world


Most important. She is happy. Nothing else matters.

Four years ago today our world as we knew it and hoped for it came tumbling down.
Four years ago today we went to the hospital to visit the Genetics scientist. We were under the impression we were going to give them a medical history and draw more blood. We knew she didn't have Rett Syndrome because the test had already come back negative. We knew they had sent it off to Houston to what they called a backup deletion test but we didn't know what that was or what it meant.

We calmly walked in and sat down. The Doctor came in and smiled at us and got out his notebook and started going though the history on both sides. All the normal history questions. Heart, lung,cancer,lupus,diabetes..........This lasted almost an hour.


He then put down his notebook and said,"Well what we can tell you about Rett Syndrome is unfortunately not much......" He said more things but I stopped breathing and the room started spinning. I stopped him and told him that Abby didn't have Rett Syndrome because we had already taken the test. I just looked at him and said,"Did you just tell me my child has Rett Syndrome and just slipped it into conversation?"
He looked at me and said,"No Mrs. Vejrosta. What I am telling you is that Abigail DOES have Rett Syndrome.


I started to hyperventilate. The room went dark and I just shook and kept saying no, no, no over and over again. I looked over at my husband for help and his face was red and he was sliding out of his chair and shaking uncontrollably. He had gone into shock. I yelled at them to get somebody, to do something. They got him up on a table and gave him juice and I held him and told him it was OK and we were gonna do this. I told him she was still our baby and she was the same baby we had yesterday and the same baby we had this morning.

By the time we got George on his feet there was several of the genetics doctors and nurses in the room. I remember looking at my daughter who was wobbling around the room and twisting her fingers and smiling. I looked at one of the doctors and said, 'What do we do?"
She looked at me and said, "Take her home and make her comfortable."
I thought she was gonna die. I was so sick. I just shook. I was more worried about my husband though. He was inconsolable.

I went home with the website address they had given me on an over xeroxed piece of paper. The thing he handed me when he told me all I could do was find other families. That they would be the only support I would have and the only people who knew how to deal with Rett Syndrome.


I went home with this hard to read flyer and started to look up information. It did not make me feel any better. It made me feel horrible and empty.
I started looking up online Rett Support Groups an finally found one. They welcomed me immediately and the very next day I heard from the Rett Syndrome Association rep in our area. Later that day we heard from Kathy Hunter the founder of the Rett Syndrome association. We talked to these ladies several times over the next week and they assured me that although it was horrible we could handle it. That Abby was still our baby and we were just going to have to choose to be happy and to learn how to dream new dreams.


This year hasn't been much different from all the other years. This may sound horrible to say but D day...October 26th never goes away. It's almost like they day our baby died. She was lost many many months before but that was the day they told us for sure that nothing would ever be the same. Every time I pass the man who told us in the hall of the hospital part of me wants to kick him. Or beat him senseless with my purse. Not his fault that she has Rett Syndrome but I will never forgive THE WAY he told us.

One thing did come up this year. Day before yesterday. I had blocked it I guess. I remembered while volunteering in the church nursery what one of the last things Abby had said to me was. I have previously recounted over and over words or phrases she had..one of the things you have to tell ever medical person you see over and over..even at the same hospital. You think they'd just look it up rather then ask you time and time again. Something one of the kids did made it come back...
I was carrying Abby through the mall. She was on my left hip and I was drinking a fountain coke in the red and white cup. She kept leaning forward trying to get it. When I wouldn't give it to her she grabbed my shirt and stuck her face in mine and said, "I love you!.. Coke?" Completely normal. Totally a toddler. Never to hear again.

There are still days even four years later when I don't want to get out of bed. There are still nights when I cry myself to sleep. It usually hits after we have been around a girl her age and we see all that she can do. Or we meet a small child who has something we previously thought was the worst and watch him run circles around Abby and watch while he signs to his Dad and is able to communicate.

Abby is very wobbly like a infant just learning to walk. She can't climb up or downstairs. She cannot pick up or hold anything or talk or used her hands. She will never gain these skills unless there is a cure.

In the last four years we have met wonderful families in the same boat as us. They have become our family. I don't know what I would have done in the last four years without The Rettlanders, , Kelly and Carrie, Ingrid and all the new families that now come to me for advice and guidance.
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