Becca's Dream

In the middle of a humungeous project.

March 12th, 2010

Besides our training to certify as service dog handlers: our video of Becca is the largest single block of time /effort we have to accomplish. As I did not know anything about putting a video together this has been majorly stretching for me and taking way more time than the actual training will. In order to train Becca’s SD specific to her and her needs 4Paws for Ability needs a window into her life. We have been video taping Becca for a year now. Sorting through it all and pulling out the things 4Paws is looking for has been a challenge. They have four pages of questions. I am finding it is taking about an hour of video per page. Half is done. The interviews about what the family knows about dogs, past experiences good and bad, what we like and dislike in a dog are all done. How Becca interacts with animals, her fears, is she appropriate or does she poke into eyes and ears or go for tails done as well.

They want to see what activities is she involved in? That took a whole hour of video in itself just covering her weekly, monthly and yearly activities. Pulling tons of 15 -30 second clips together so 4Paws could see the kind of crowds we would be taking the SD into, and to hear the noise levels of these situations. Took a few hours after preparing that video to engage in my own little pity party. We do so much to keep her busy! It is no wonder I have no life of my own!

Well drop the pity party because now I have another problem. This third disk will not save and burn. Seems that I cannot put materials from three different cameras into the same video. Especially when some are avi and some mpg. AAGGHH!! Well I wasted a day trying to make it work and hubby has used another day to convert mpg to avi and guess what? That’s right it still won’t save or burn. Hm-mm, I thought I had a hard time learning to blog. Speaking about learning to blog my son updated my google browser and the next day all they side bar information on Becca’s Dream was gone. I had entered her site through that log in for so long I had forgotten how to get here any other way. I was locked off of the blog for a week. But that’s OK, I am learning more about my computer the web and my blog everyday and getting much practice in learning to control my tongue. Last week I was yelling at my computer and realized Becca was sitting at my elbow. Oopps! Time to reclean the mouth and make appologies.

I actually missed not getting time or beong able to log on to do this. But learning to make a video is good. So I’m grayer than I was four weeks ago. And Ok I have less hair because I have been pulling it out in frustration. My mouse is also worse for wear because of my frustration in fact I am surprised it still works. Some friends and I said it would be cute to have one that squeaks and scampers away if you smack it down on the desk top. Well so much for my technology woes. Excuse me for not working on the grammer today been down with the flu. But as I was instructed on how to get back onto the site I wanted to shout out to you all.

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Go! Go! Go! US Olympic teams!

February 14th, 2010

Becca is really into cheering on the Olympians. However, she believes doing so should be a team sport. She kept calling for her dad to come see this or come watch that. No breaks allowed for us while she was watching the games. She has even verbalised that we must watch as a team. It was interesting to see her understanding of competition during the Nordic combined. I watched as her body tensed up while she watched the end of the race and cheered loudly. Yeah USA!

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Red Light, GreenLight

February 12th, 2010

Do you remember that childhood game?

I do!

When I was twelve my brother counted up all the kids on our street. In one block, on just our side, there were fifty three of us from birth to eighteen years old. Back then there were no fences and the backyard ran from the top to the bottom of the block. We had a six house stretch of lawn in which to play red light green light, red rover, kick ball, dodge ball or anything else we could dream up with fifteen to twenty players per game. The best games were hide and go seek at twilight. With porches on the fronts and backs of all the houses, alley ways in between, the car lot on the corner and a huge ten foot high bushy hedge running three quarters of the block at the back of the yards there were hundreds of places to hide. We only had three restrictions; you could not cross the street, you could not go around the corners and you could not go inside the houses. What a way to grow up. I can still hear my mother’s solution for sibling squabbles ringing in my ears “Go outside and play! You are driving me crazy!” We were more often than not outside.

Wow what dredged up these forty year old memories? Becca did. I picked her up today to take her to FTEA for her equine therapy session. Two blocks down the road she pipes up with “Nancy, the green light means go”. So of course I ask about red lights. Then remembering that she had mentioned playing red light /green light the night before my brain fires and catches on to the thought “ohhh teachable moment”. So off goes my mom/chauffeur hat and I plunk on my mom/speech therapist hat. I have a twenty minute drive ahead of me with stop lights every five blocks a topic initiated by my daughter (unheard of) and of such interest to her that she did not clam up the minute I tried to engage her in conversation. Trust me I got all the mileage I possibly could including the concepts of top middle bottom, left center right, continuity of where the red and green lights are placed (you see we are not sure that Becca is not color blind) even engine revving tire squealing and brake noises. It actually was a fun drive.

FTEA helped us out by ending today’s session with a game of “Whoa” & “Walk on” to red and green cards. Before coming home we stopped at Costco. The second time I stopped the cart Becca pipes up again with “red light” and again with “green light” as I started to move again. Then came the request to play red light /green light. So I took off the mom/therapist hat and pulled out my plain old mom hat, true I had to dust it off (it was thick with dust because I haven’t used it in so long) but I plopped it on my head and began to play and laugh. We had a good time stopping and going while calling out red light /green light all through Costco to the amusement of many of the customers and sample ladies. Two women we know caught us playing. I think they were more than just amused they actually enjoyed seeing our game. My heart was thrilled to be interacting with my daughter and having fun doing so.

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Spelling it out.

February 10th, 2010

At least one person has commented on not being able to understand the post on FTEA & New hairstyle equalling increased confidence.
If a person has never been exposed to the handicapped population and has no handicapped people among their friends and acquaintances I can imagine that they might be confused. It is difficult to understand any topic if you have not had the chance to learn the basic underlying facts. Frankly, life for handicapped people is different than what the rest of us experience and as uniquely different for each one of them as their handicaps vary from each other. Lately I have been trying to help people see, feel and understand what is it like to live life in my daughter’s shoes. I want you to understand. Forgive me if I have not expressed myself clearly enough. I will continue to try and increase my clarity.
Handicapped people are no longer hidden away in family homes or in institutions. They are out in public places. We see them in stores and restaurants on a regular basis. Let me tell you now they also see you in all your varieties. They and their families clearly see and feel the bad manners of many “normal people”. They see the people whose bodies visibly recoil when they look at them. They see the noses wrinkle up in disdain showing disapproval and a (false in my opinion) sense of superiority. Eyebrows that knit together and eyes that darken in disapproval at the voices that are perceived to be to loud, at inappropriate and untimely comments, at the disoriented behavior or weird clothing/color choices they happen to be wearing. There are usually medical reasons for these “strange” behaviors. Things they have absolutely no control over. It is so sad that the above responses coming from “normal” people do not have equally valid reasons for being publicly displayed.

Fortuanately such ill mannered persons are increasingly in the minority.

Most people just go about their business paying as little attention to the handicapped as they do to anybody else moving about the mall or other public places. They do no harm and even allow handicapped and their families a sense of being no different than anyone else.

Then there are those of you who blessedly still practice good manners. You do simple things like smile and say hello. You hold doors open for us even though it means waiting for our loved ones to navigate steps or the door way. You nod and say things like “that’s nice” when you are enthusiastically given information that makes no sense. You may even take a few minutes to hold a conversation about an appropriate topic like; “what are you shopping for or what are you eating.” We are blessed by your kindness to us.

Posted in How do we interact? | 2 Comments »

Added an “About” page

February 10th, 2010

In my effort to organise and update my site I have added an “about” page.

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Thank you for your comments

February 5th, 2010

For those of you who haven’t figured it out yet I do not belong to the computer generations. Your comments, however, are making me aware of things that could make this blog better. Things like figuring out how to use categories in posts. I need to work on labeling the past posts by catagories rather than just by the date order they were written in. You also have me looking at templates. I at least found were they are. A few months ago I couldn’t even wrap my mind around what a template was let alone consider changing it. Not trying to ignore you just trying to figure out what you are talking about, who to respond to and how to respond. Figuring it out one term and one click at a time.

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Four Benjamins

February 5th, 2010

I believe I wrote somewhere in my posts (I need to figure out how to catalogue them better) about a family who has been choosing a cause each Christmas and donating to them the collective money they would have used on those small gifts that adult siblings give to each other. Last night I was handed an envelope with Four Benjamins inside. My eyes popped. Personally I may see one Benjamin every few years. I am far more familiar Andrew Jackson.

Thank you Eileen & Dan for asking your family to consider us this year. Eileen I am glad it was your choice this year. We are so grateful and so honored. Have to decide if it will go towards finishing the fence or our lodging during training.

To date we have received $458.60 and a promised x large dog crate towards all the things we need to get and do.

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Now only a 179 days to wait.

February 4th, 2010

179 days left and guess who is getting scared? Not Becca! I have been thinking about having to care for an animal which will likely be as big as my daughter. Just thinking about it is overwhelming. My mom always said having a dog is like having a two year old forever. Becca’s baseline is about three years old. Whoa boy! Two beings the size of small adults and with toddler minds. Yeah!

Following is something I wrote tonite for the 4paws family network decided to share it with all of you as well.

OK everyone think: “Whistle a Happy Tune” from The King And I

(Mom’s verse)

When juggling all the balls

that make up my crazy life

I think about adding a dog

And I just want to run and hide

How will I ever manage

To control a dog that huge

can I ever pass certification?

Will my disaster make the six o’clock news?

My daughter needs this S.D.

Of this I am convinced

But will I survive, so disorganized

Oh God is it to late to quit?

Oh someone give me a hug

And the strength to carry on

For August here I come

The days and clock just keep ticking on.

(Child’s verse)

When ever I feel afraid

I think of my new friend

And make my funny noise

And (s)he is there to calm me down

When walking in the mall

I no longer get lost

My tether keeps me tied

And safe beside my mom while she shops

The result of this connection

Is very strange to tell

For while I get independence

My mom gets some as well.

So , I travel with my S.D.

And my S.D. watches me

And life is getting easier

Because I have a friend who walks with me.

And Yes I write when I need to get something out of my system.

And Yes I am stressing about being disorganized and the size the SD will need to be to tether my adult daughter.

And Yes I am trying to stay upbeat thus the catchy tune and the second verse that was actually written first. Figured I might as well be real and write the mom’s verse too.

Since my hubby laughed out loud when I shared it with him I’ll be brave and share it with you.

Nancy Tally

August Hot Dogs 2010

Posted in My Joys and Challenges, Our Count Down | 2 Comments »

Another FTEA miracle

January 29th, 2010

Becca was born in 1982. She never stood by herself untill late 1985. On May 17 1986 she took her first solo steps. She would walk holding our hands but would sit down immediately if we took the security of our hand away. We had her hold onto a balloon that we were holding and walked her from one end of the house to the other and back and forth again and agian. When I had the camera ready her daddy let go of the balloon. She did not notice, just kept on walking. She was quite upset and not a little panicky when she first realized that she was walking on her own but soon adjusted to the idea.

Becca’s first independent steps

From then on she just kept going faster and faster always with her head down. Becca would careen and crash through life for the next twenty three years. For all of those twenty three years we battled to keep her safe and to get her to walk with her head up. Nothing worked. Did you know that if you run head long into one of the metal posts in a mall they will actually ring like a gong? Warning checking this info out can really hurt your neck or knock you unconscious.

Three weeks into the FTEA program Becca started lifting up her head. She has come close to crashing into posts and walls but has lifted her head just in time to pull up short of a crash.

Dec 9 2009 Becca as she walks now with head up.

After her stroke in 2007 Becca was not lifting her feet or noticing any uneven surfaces. She would trip and fall over the smallest bump in her path. After two months of riding she started showing awareness of bumps in her way. We would watch her stop; fish with her foot by waving it above any suspiscious spot until she knew where to safely set it down. She now has an awareness of where she is in space and a visual awareness of what stationary objects could endanger her as she travels. Twenty years of daily remedial work in school never made a dent in this problem but a few months on a horse once a week has resolved 90 % of the issue. We will keep her in FTEA just as long as we can afford lessons.

Abby Harr kept Becca from falling as she learned to run once again after her stroke

After Becca's stroke Abby Harr kept her from falling as she relearned how to run.

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FTEA & New Hair style = added confidence.

January 29th, 2010

In many ways things seem to be falling in place for Becca.

Ever since she started therapeutic riding at FTEA in the fall of 2009 we have seen her confidence blossom and grow.

FTEA first day 9-3-09

Listing to the left

Her left side weakness is obvious in these photos from her first day. Her side walkers were exhausted. The walker on the right had to pull on her gait belt the whole time and the walker on the left had to constantly shove her back into the saddle. At one point it appeared she might just fall off altogether. It was all the walkers could do to keep her upright. Everyone thought Becca did not enjoy riding because while she made some grimacing faces there were no real smiles. Little did they know, Becca’s enthusiasm ran so high that she had chosen to go riding even though just a few hours earlier she had had a unplanned root canal. Her novocain had worn off and yet she made me hang around and watch the next group of riders. She was so excited, Becca flat out refused to leave. For days she talked of nothing else but “Doc” and how she was able to ride on him.

Only one month later

Every week the other parents, who also had first time riders, and I would stand about and watch in amazement at the changes in our children. From week to week we could see them get physically stronger, sit taller, participate more. We would all three cheer loudly for each new accomplishment in any of the children, often asking did you see your daughter/son do that ?

For Becca the biggest growth issues have been confidence and the ability to finally process her thoughts into speech. We went from having a daughter basically locked with in herself, who did nothing for herself, never stood up for herself and whose only language consisted of echolalia and perseverated speech; to a daughter who had a whole new world and life opening before her. Previously if Becca was hungry she would stand in the kitchen and stare at the fridge or the toaster and wait until someone noticed and asked if she was hungry and then fixed her something. I was stunned the first day she went out ,opened up the fridge, then the freezer, and chose an ice cream bar. I inquired “what are you doing?” She replied ”I would like an ice cream.” I told her good choice and asked her to please close the freezer and ask first next time. The next time she asked and of course I said yes. She has asked for many small things since then and we have accommodated about 99% of them. With each yes her confidence grew and our amazement grew as we were finally seeing glimpses of what was locked inside our child all these years

a first attempt at posting

Tall in the saddle at five weeks

In the intervening three months we have been marveling at her vocabulary, at the things she is curious about, at the odd things she notices while we are driving and at the connections she makes between places, people and music. Her sentences are now complex and expressing independent thought. Last night, she was for the first time, voluntarily answering multiple questions in her music program. The directors were visibly surprised as were her peers. We have all been long accustomed to her refusal to participate verbally in anyway.

On to the hair. A month ago we purchased a professional hair straightener and have changed her hair style. She loves it. You can tell because she has that little peacock strut going on and walks around flipping her hair about. As soon as the hair was straightened she started trying out her big words, slowy at first but frequently now. I find her vocabulary both amazing and amusing. I have been kicking myself for not writing down the first things she said for I have managed to forget them all. Oh and yes she is starting to stand up for herself; at least by telling on those who are hurting her at her day program even though she has not yet told anyone to their face to leave her alone.

Now the hair ties in to FTEA because before she started riding she always walked with her head down. Thus we could never leave her hair loose and down as it was always in her face obstructing her vision and in her mouth, eyes and nose. You can check out my second article for more info on finally walking upright in the next post More FTEA Miracles

Posted in Becca's Joys & Challenges | 7 Comments »