Thank you for your comments

February 5th, 2010

For those of you who haven’t figured it out yet Iam not of any; of the computer generations. Your comments are making me aware of things that could make this blog better. Like I just figured out how to use categories in posts. Will have 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.

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.

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

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 immediatly 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 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 independant steps

Becca's first independant steps

 

From then on she just kept going faster and faster always with her head down. Becca would careene 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 2009Becca as she walks now with head up.

Dec 9 2009Becca 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 set it down. She now has an awareness of where she is in space and a visual awareness of what 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

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

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

FTEA first day 9-3-09

Listing to the left

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 get her upright again.  Everyone thought Becca did not enjoy riding because while she made some grimacing faces there were no real smiles.  Little did they know. Becca had chosen to go riding even though she had had a unplanned root canal just a few hours earlier. Her Novocaine was wearing off and still she made me hang around and watch the next group of riders because she was so excited she refused to leave. She talked of nothing else but “Doc” for the next few days and how she got to ride him.

Only one month later

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 speeches; 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 asked 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 attemt at posting

a first attempt at posting

Tall in the saddle at five weeks

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 do 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.  Slowly at first but frequently now. I find her vocabulary both amazing and amusing. I have been kicking myself for not writing down the 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.

Talk about your gliches.

January 28th, 2010

Becca has been, literally under the weather. Swinging barometric pressures just kill her. With pain in her head that forces her to sleep most of the day.

Yesterday, when she was awake, we saw 2-3; 30-60 second petite malls every hour.

Can you imagine going about you day and every 20 minutes your body and consciousness freezes for a minute or even just a half minute. What happens if you are in mid-step on the stairs? Hopefully someone is there to catch you as I was when Becca came careening  backwards down the stairs two days ago.  You definitely would not be allowed the independence a driver’s license affords. What if you are in the middle of lifting a roast out  of the oven or draining a pot of spaghetti? Even carrying a carton of milk or eggs can get very messy and frustrating. How much information would you miss while sitting in a lecture or listening on the phone?  How much confusion would you feel as you try to figure out the rest of the lecture/conversation with that much info missing? What if you are crossing the street?  See “Being grateful has me remembering” in the August archive for one of Becca’s harrowing experiences. I could go on and on. Could you picture a word document full of one single letter???????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????? That was just five seconds worth! Go ahead move the bottom slider.

Give thanks for your blessings and remember to be patient with those less fortunate than yourself.

Brothers

January 26th, 2010

Nathaniel came to visit this weekend.  On Sunday we picked him up and went on to see Jonathan . It was the first time in over four years that Becca had both her brothers in the same room at the same time. She was delighted and stayed close to both of them.  When it was time to come home she was quite distraught that Jonathan was not coming with us. She fussed for a full half hour. Of course she blamed me that Jon did not come home with us.  After all I was the one driving the car away without Jon in it. It was also my fault today that Nathaniel left as I drove him to O’Hare. Lucky Roland, he drove to pick up Nathaniel and most of the way to visit Jon.

Nathaniel and Becca both share a belated Birthday cake.

Nathaniel and Becca both share a belated Birthday cake.

Nathaniel and Becca shared a belated birthday cake. 31 candles for him and 27 for her.

Sharing the job of extinguishing the candles.

Sharing the job of extinguishing the candles.

It is a hard thing to be the one who never grows up enough to leave but always stays behind waiting for others to remember to call or to come back for a visit.

More Christmas pageant pictures

January 25th, 2010
What can we give to the King?

What can we give to the King?

In song the STARS queried about what could they bring to the king? Bring to the one who had everything?  There answer: bring him their hearts opened up wide, bring him their lives with nothing to hide, and bring him a love that is faithful and true.

Scarfs representing the night wind

Scarfs representing the night wind

Karilyn sang to us about the night wind asking the little lamb if it saw the star dancing in the night.

our little lamb

our little lamb

Our brightest star.
Dancing in the night

Dancing in the night

The lamb tells the shepard boy about the song and the Shepard boy tells the King about the shivering child.
shepherd boy

shepherd boy

The King comes out and declares all should pray for peace for the child sleeping in the night will bring us goodness and light.
The story could not have been better told by seasoned actors. This pageant done by people so pure of heart is truely a joyful Christmas event not to be missed.
Pray for peace

Pray for peace

Becca as “Mary”

January 25th, 2010
Dec 11 2009 Finallly Mary

Dec 11 2009 Finally Mary

All those years of wistful thinking and hoping and wishing and finally: Becca is Mary. All those months of preparation and anticipation did not prepare Becca for the stage fright she would face during dress rehearsal and before the program. We ended up at dress rehersal adding her daddy to the cast. Squatting down on the floor behind her he hung on to her so she would not bolt away. It was good that we had to work that out in practice for we had to do so for the performance as well. The night of the program Becca was so scared she actually got up from her seat before the program and started leaving I had to call for help to wrestle her back to her seat and keep her there.  Thank God for our program director. Dawn’s voice and style of communicating is like pouring oil on troubled waters. She talked so calmly and encouragingly with Becca that Becca agreed to stay and participate as planned. Prayers said then and there for Becca, in her hearing, seemed to seal the deal.

Taking care of baby Jesus

Taking care of baby Jesus

As the evening progressed Becca really got into her part as Mary.  Afterward she would not get out of costume and enjoyed all the attention and compliments she received during the cookie reception.

Listening to the angle choir

Listening to the angel choir

Only 189 days to go!

January 25th, 2010

Only a 189 days to go.

Becca still drags her book 24/7.  

I have updated her pictures removing those dogs that have already been assigned to another child.