Going for it

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

Clusterflaggagled

Another Terriism...hey at least they arn't involving the f word as much.

My blog posts have been getting further and farther between. I will try to fix that. Lord knows I need to get things out....I need to find a healthier way to do it. For a while now I have been way too reliant on Crackbook...I mean Facebook and that is ending. I thought about deleting my page all together and I did. In a matter of hours I had a few friends in a uproar...So I will leave it for now. Please don't expect my every thought and happening to be posted there anymore.

It's weird. I fought going to Facebook for a while but all my friends were there. I had a few people speak of privacy concerns and being addicted to it. I became a Facebook addict. I checked it my page 2-3 times an hour all day..every day. I posted every conversation, thought and feeling on it. I would get upset when I got no response from people I didn't even know. Then it got to a point that I had to think about every post so as not to offend anyone. Why? Because people start to believe that every post is directed at them or about them. A while back I had a fellow RettMom darn near lose her mind when I didn't respond to things she would say or post. It wasn't that I hadn't read her stuff...I just didn't have anything to say about it and apparently that made me a horrible person.

I very recently lost someone very dear to me because I chose not to post when we were having some kind of tiff that I was clueless about. I mean I knew something was wrong but couldn't see their side and they couldn't see mine and instead of talk about it...or not talk about it I'm afraid the friendship is lost..and that hurts me. I honestly thought by not mentioning them or it on Facebook that it was keeping it between the two of us. They unfortunately saw it as disrespect. I never intended to hurt anyone by anything I said or didnt say or by trying to respect what I thought was going on at the time. See? Facebook sucks. I probably kind of suck too and this is the last I am going to say on this subject.

I have also.....kind of stepped away from the world of Rett Syndrome...If that is even possible since I live and breath it but I just couldn't be all Rett all the time. I had to face that it is something I am going to have to learn to live with. I needed to move on. I still have hope. I am still there for anyone that needs me..it just can't be all that I am. It was smothering me.

This past weekend I went to New York and spent 2 days in a class trying to learn how to better communicate with my Abby. I found myself not wanting to be there. There was a time when I would have wanted to be nowhere else than with 50 other people that get it. All I saw was 50 broken hearted parents and families.

On Saturday nights I had dinner with 3 Rett parents I already knew and love, one of my besties and a couple I had kind of met that day in class. I just wasn't me. I saw the raw hurt on one Moms face when we talked about the things people say. In this instance it was the grand old,"Everything happens for a reason."

I could barely look at her as she tried to convey her feelings with another parent who felt the opposite as she did. I was just frozen. I'm sure that term does make some people feel better. I am not one of them and neither was she. Her baby is a couple of years younger than Abby. The counselor, Mom and sisterhood in me wanted to take her from that table and go somewhere quiet and hold her hand and let her cry. Let her cry and tell her it is OK to feel the way she does. The nervous wreck in me..the one trying to pull away just sat there choking back the tears and trying not to look at her. I'm sorry for that as I write this. Her and her husband are lovely people and I hope we maintain contact..at the time I just couldn't. New York made me an absolute nervous wreck and I was out of my element. Hugs to you J and S.

What am I trying to say here... The official duties in the world of Rett Syndrome is done for me for now. The person who cares and is here has not. Does that make sense?

I need to be Terri, I need to be Kyler and Abby's Mom. I need to get back to the hysterical person that gets me through life. I am not Rett Syndrome. It stole my daughter, broke my family, my career and my lifestyle. It has tampered with my faith, broke me, my marriage and most of my relationships in the outside world. I need to get back to the outside world before Rett Syndrome swallows me all together....

until my next post anyways....

Love to all

Dora, I good girl, yah!

Tell me this kid isnt in there and doesn't need to communicate! Oh no I'm sorry wouldn't be able to communicate

Almost lost it

Hey all.

I recently has my quarterly breakdown. However this one did not last a few days. I would say about 6-8 weeks probably.

I cannot even believe the person I turned into over that time and I apologize to any and everyone that was effected over my rage,depression and negativity. For those of you that continue to stick by me I am forever grateful. I often say I don't think I could be friends with me. You just never know who you are going to get from day to day. Everyone loves funny inappropriate Terri.Kind,helpful,loving Terri rocks. But too often lately..what's the point Terri has reared her ugly head and for that I apologize. It's not easy living in this...this...strange mind with the vicious tongue. I am fully aware that I can be mean, hateful and super negative. I blame it on social media. I used to be able to just keep it private in a notebook somewhere.

Now at any time and any place I can shout to the world that I hate, I'm mad, I hurt and they respond. It is by no means an attention seeking thing but more of a my God doesn't anyone hear me thing. I may think that somehow, someway if I get it out there someone will care, will help. I guess I don't know lately but I do know I've been awful.

I have had to take stock of my life, my relationships and my responsibilities and have had to let some of it go. It was not easy. Live your best life right Oprah? This is the hand I've been dealt and come hell or high water I will find a way to be happy about it.

So continue to bear with me please...I really appreciate it

Scoliosis, Rett Syndrome and my Abby

Last year I told you all how Rett Syndrome Sucks. I told of our journey with Scoliosis and Rett Syndrome along with pictures of xrays. On these xrays you could see that Abby's curve had doubled in just a few months time. Despite the facts that we had enrolled her in Hippotherapy and upped her PT time outside of school her curve still doubled.

It took us several months to find a Chiropractor and Massage Practice that would take Abby on. With a huge discount and help from our church we were able to come up with a plan of treatment. Once again Thank You Fountain of Life and Nashua Baptist!

You can view the video of her progress here.

Never the less...it was not enough. Although we do intend to keep her in all her therapies we had to make the decision to brace Abby. It was not an easy one to make and almost everyone said the same thing..."Bracing doesn't work with Rettgirls. They don't tolerate it."

Here are some pics from Abby's brace fitting...that she is tolerating beautifully



When they first put it on. I was so upset but I knew if I cried she would too and she was being so good.
Here we go..she can sit up
Look at her Cheesing at the technician
On the way out. Sitting up as straight as can be....and yes..her legs really are that long!