What a Difference a Day Makes....

Today was not the easiest day to spend with my daughter. I painfully say that I know how the teachers must feel sometimes.

Abby does so much for me here that she has never shown them. After yesterday I have been on my Mama Bear mission to prove she knows, can learn and is in there.

Today...she was having none of it.

We have a Multi Modal approach with Abby. If it doesn't work one day we try again the next with something else. Maybe one day flash cards. The next computer choices. Sometimes picking things out of a book.

Today there were times that I thought if she could make her little body work she would have beaten the snot out of me.

She wanted nothing but that stupid television. Damn Wiggles and Dora till I want to pull my hair out and run naked though the streets...Yes If I'm going down...you are all coming with me! I will give you no warning. Poor poor people...that vision in your heads..it won't go away...never ever....(insert evil laugh here)

Today I tried Flashcards...The reports say she can't identify animals so I had a set of inanimate objects and a set of animals.

She purposefully....did nothing...but mess with me. Wrong answer, every single time. Wrong answer or no answer. She would growl at me. Spit at me. Turn her head. Look down. Auugghh.
I'm sure she is tired of being drilled. I would be too.

I do have the videos from 3 years ago...but they don't convince anyone now. I need to get this girl engaged again.

Im thinking an afternoon at Barnes and Noble letting her pick out books is in order.

3 years ago when we discovered The Wiggles...Man oh man. Something she took interest in. Something that excited her. She can't really hold a doll or play pretend. Finding something that made her happy ment the world to us...now she is a TV junkie and wants nothing but. I wish I had known. Darn kids...I would have gladly given birth to a how to manual when she was born. What's a few paper cuts down there when you give birth to a 9 pounder...face up...with no epidural???

So soon...maybe tomorrow we will head to bookstore. Providing I survive taking her to church and don't want to drive home as fast as I can and crawl into my bed and pretend this isn't our life...

Calgon???? Anyone????

A Voice for Abby

A Voice for Abby: We are on a mission to give our non verbal daughter living with Rett Syndrome a Voice. A MyTobii speech generation device that works through eye gaze runs 20-22 thousand. Gifts of $$ can be given here...on the sidebar or mailed to the following address:
Anyone interested in holding a dinner, dance,motorcycle run or anything that can help please contact Terri at
vejrfam@yahoo.com with the subject  A Voice for Abby

Check or money order only by mail please:

Abigail Vejrosta
5930 NE Russell Rd
Kansas City MO 64117

Thank you!

Hardest Decision in a while

Today we had Abby's yearly IEP...My heart hurts.

There are things we read as Rett parents. Things that are said..that we REFUSE to listen to. I have been fighting this battle for 5 years now.

They being the Doctors,Educators,Caseworkers,Authors...all at some point have or will tell us that our girls are Profoundly Mentally Retarded. Maybe not always to our face. Sometimes we find it in a report, a prescription or hear it in passing.

We read it in medical journals...God writing this...I think I may vomit.

This is the background to why we are so sensitive to the word in any way.

Yestaerday I felt as if I was told my child knows nothing....they didn't say it in that way..it was all stats and data days..choice of 2..less than 50 %

So...Last year at this time..Abby started seizure meds. When she did, what was left of my little girl slowly went away. She spends most of her days in a daze...but only at school. At the last IEP meeting I suggested half days and I upset her teacher so much that I dropped it.

A few months ago the observations of others really started to get to me. The notes every day that she slept from the time she got to school till darn near the end got to me. I just kept thinking...If they don't get her...If they don't believe in her. If they can't read her or give her the tools she needs, or adapt to her needs...I may have to pull her.

In the last week I got a report that she can only find her name about half the time..a little less actually. She can't identify numbers. She doesn't know shapes or colors. All things I can get her to do at home. I'm not gonna lie. She doesn't always perform for me. If she can't do it one day I try a different way the next. She has days where her little body won't do anything she wants it to. AND quite frankly...if someone asked me basic shapes,colors and numbers every day for 5 years...I think Id shut down on them too.

I believe that is what she is doing. She doesn't sleep at home. She doesn't nap during the day. You put her in school and she sleeps all day. I really think she is just turning off.

We thought...and it could be a possibility that the bus ride for an hour is putting her to sleep. My problem here is that when I take her anywhere she falls asleep almost every time. But when it's time to get out of the car and get moving she does. I have no problems.

If she is asleep when she gets home on the bus she is wide awake before we get in the house. Giggling and ready to go.

So....I pulled her from school. Not completely for now but we are moving to half days as soon as they can get a bus scheduled for her.

I have done everything I can. I will admit that I told myself going in today that if all I heard was that she sleeps,sleeps, sleeps then I was gonna pull the half day card. When I was handed a report that Abby performs at a 0-18 month level...and even those scores we're pretty low...it was all I could do to maintain. I had promised the teacher that I would not be an asshole this time and I wasn't. I didn't expect that report.

So here we are...Afternoon therapies will be moved to before school when possible. The fight for the My Tobii is on!My daughter talks with her eyes. She looks at what she wants. She can't talk...she can't touch...she can't sign. I have to help her. If I had a house I'd mortgage it to get her an eye gaze speech generator.

We are on the procedural list here in Missouri for those who don't have 20 thousand or so in their pocket. I have heard it takes years. I hope not. More than anything I hope not. At the end of most weeks I don't have 20 dollars so any suggestions for a fundraising campaign would be greatly appreciated.

PS:;To the IEP team...I know that my blog is looked at after IEP's and I get that. I see and hope for more in my child than you will ever be capable of. It is totally my intention to get her into a rhythm where she can function for all of us. My heart hurts more than I can express here. I understand your rules and I wish more than anything that you would let me come in there and volunteer. Take however long it takes to show you my Abby. No pay...no nothing. Just me helping you help her, I may not have any license or degree but I AM her expert.
Am I aware that she is cognitively impaired? Of course I am. I know her brain doesn't work the way it's supposed to...I just believe we have to work around that. She's in there. She is so much more than the pretty sweet little girl with the sparkling blue eyes. She has so much to say....I don't want to be the only one willing to listen.

Rett Syndrome Episode

I am posting this to find answers. I do not know for sure what this is but it comes and go. Making this available here for her Doctors to see

A VOICE for Abby

For several years now we have been wanting and fighting to get Abby an Eye Gaze Speech Communication Device.

For a while I fought and fought through the school district. While they will admit and write in her IEP"S that she communicates through Eye Gaze...when it comes to trying to get her one, they fall back into the old routine of her not being consistent and not proving what she knows. I can give them every book and paper in the world on Rett Syndrome and it is just not happening.

I have shown them videos of her looking at answers. I have brought educators in my home. They just don't get physical Apraxia. I guess you can read about it. Study it but I don't think it's something you really get until you have a child with it.

I have asked several educators and Administrators what it means and they know that they have to wait 30 seconds to 2 minutes for an answer. When you actually watch them ask....they don't give her more than a few seconds. There always seems to be a person in the room repeating the question over and over no matter how many times you correct them.

Over the weekend a friend got Abby a toy. It's a Dora globe by Vtech that plugs into your TV. You help Dora explore the world by pressing different continents and using a simple joystick. We sat down today and I held her hand over hand and tried to help her follow simple instructions.
I sat there why she tried to pull her hand from mind over and over again. She growled and tried to bite at me until she went stiff and started to tremor.

When we turned on Dora the cartoon she stood in front of the TV and noise pointed at Swiper and Dora. She turned in circles every time they counted.

She has to have an Eye Gaze device. We have tried her before on a Dynavox and a Tobii c12 with eye.

She is seven.She should be able to play games and play music. She should be able to switch channels and answer questions. A very hard...impossible task when you have no use of your hands. When you are totally and completely non verbal.

Tomorrow I am going to make an appointment to have her tested. I have no idea how long this process takes. A while Ive heard.

So here's the deal. I need your help. Or I will. The My Tobii is the best device for her. It with a stand and the eye camera is near $20,000

A friend of mine obtained one for her daughter several years ago. They absolutely love it. I have to say that her daughter is more physically disabled than Abby is and she can absolutely use the device to carry on conversations. Make requests. Play music and videos and do her school work.
The issue is that even if you can get insurance to pay for it they almost always will not pay for ALL of it.

I have heard stories of them not paying for the stand, which is $1600.00. I have heard of several cases where they won't pay for the camera that catches her eye gaze and uses it as the mouse. This one is $5,000 extra.

Hopefully we can get them to pay for all of it but if not I will need anyone willing to help me hold a fundraiser to create a Special Needs Trust for Abby.

I think if we all pull together we can do it.

Watching my daughter fall to the floor, stiffen up and shake because I am trying to get her to use her hands is something I don't care to witness again.

A friend in New Jersey just last month was able to raise enough funds for the entire package in one night. Now she defiantly has wealthier connections than I do so maybe we have to do more than one.

I would appreciate anyone that wants to sign on. I will keep you all posted.

Goodbye Uncle Billy

Saying goodbye to a family member is one of the hardest things any of us has to do.

This past week we lost and buried my Uncle Billy. I cannot even express in words how much this has affected me.

I have spent so many years focused in my little world. My world of me, my husband, my kids and Rett Syndrome.

In the last few years I had to walk away...or more accept that they walked away..my fathers side of the family that I kind of forgot that I had another family.

My mothers family. My Grandmother, my Aunt's. My Uncle and my cousins. The people I grew up with. Unfortunately I have no relationship with my mother and because of that I kind of let everyone else slip away too.

I came around for illnesses, surgeries, weddings and such but my monthly and reunion visits have stopped all together. Some because of my own selfishness and inabilty to forgive. Some for my own self preservation and sanity. A lot of it has to do with Abby. When I am nervous or stressed she is nervous and stressed. She is highly allergic to dogs and everyone seems to have at least one.

My Uncle Billy was 54 years old. I hate saying was. Makes my heart hurt. He was 12 when I was born. He had lived for the last 15 years with Hodgekins disease. The same form of cancer that took my Daddy 10 years ago. Dad lasted about 18 months after his diagnosis. Billy fought long and hard for 15 years.

I never understood how he did it. His quality of life...he was so strong. Chemo had taken most of his heart, liver and kidneys years ago. He has had caregivers for so long. His daughter has taken care of him for many many years. Thank you Heather for being such a good daughter.

Billy was 39 when he was diagnosed. I never once heard him complain. He always kept his onry sense of humor. He tried to hold on to his indeperndence long after he was really capable of it.

He was a good man. A good husband, a great father, son, brother and Uncle and Grandfather.

Seeing him lying there in that coffin. He looked better than he had in a decade. We all stood around forever after the graveside service several miles outside of a very small town. No one saying it. None of us wanted to walk away and leave him there. It didn't seem right. Putting my uncle in the ground and walking away. It had been a beautiful day up until then. The temperature dropped 20 degrees and the wind howled. We just left him there.

I haven't been to a burial funeral of a friend or close relative since I lost my God son in 97. My Grandmother was unable to bring herself to go. To bury her youngest of 6. Her only son. I'm glad she made that choice.

I have to make more time for the people I love.

I love you Uncle Billy. Tell Harry and Daddy I say hello....

Just you wait

When Abby was 4 years old I went a little ballistic at an IEP meeting. I know. Imagine that. Abby was most of the way through her 2nd year of special needs preschool and I heard things like this:

We have never seen her act like she understands anything.

You have to understand that your daughter is profoundly mentally retarded and I think it's hard for any parent to grasp...especially when she looks so normal. She is really very pretty.

Abby is in her own little world with little interest in anything other than socialization. She is very popular with the other kids. Even the typical ones.

I could go on and on. I flipped. I went home and over the next few days took the following videos. Unrehearsed...1st take videos. They show her following along in a book. Looking at the pictures as they are mentioned in the story by face pointing or slapping the character.



and



I showed that she understood colors and shapes. She would choose directly from 4 choices by slapping at(she cannot point) or by looking directly at he answer. With Apraxia....the worst part of Rtt Syndrome, you do have to wait anywhere from a few seconds to up to a minute for an answer. This is not something I have made up but scientific fact.

When I took the videos to school the director cocked her head at me and looked sad and said," You are her mother. We are never going to see what you do."

Ouch.

These videos have been used by Neurologists and lecturers from Harvard to Columbia and more..yet I can get no one to admit or agree that she can answer, choose and learn.

In the next few days or so I am going to attempt to gather video of her doing these kind of things again. Why? Because I can't seem to get through. I adore Abby's staff and I know they mean well but, they don't get it.

I have gone in and shown them how she pics yes and no. She can do it by eye gaze on a card and by direct eye contact or looking away. I have shown them how they have to wait if she looks at the wrong answer first...especially if she hasn't looked at the right answer. I have shown them how..if she looks at the right answer first she will not go looking for the wrong answer.

Why am I doing it again? This quote," She has Rett Syndrome. Just because she could do it then doesn't mean she can do it now."

Double ouch.

I have to wait till I can have someone here to film while I work with her but they will come.

You'll see

Just you wait