Archive for the ‘Becca's Joys & Challenges’ Category

Red Light, GreenLight

Friday, 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.

Another FTEA miracle

Friday, 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. 

eBecca's first independant steps
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 2009Becca as she walks now with head up.

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.

FTEA & New Hair style = added confidence.

Friday, 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 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

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 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 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

Talk about your gliches.

Thursday, 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???????????????????????? Took out that five seconds of question marks,because I became really tired of having to scroll all the way to the bottom of the page to log in. Too bad it was pretty impressive.

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

Brothers

Tuesday, 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

Monday, 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

….
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”

Monday, 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

Facing the facts?

Sunday, January 17th, 2010

On December 20th Becca became an Auntie.  I had told you previously how Becca carried her baby doll, Kate Noel, around 24/7 ever since her twin had conceived back in March.  I think Becca has had still another one of those hard moments when she realizes the truth about her own life.  Becca was able to visit her twin over Christmas and spent some time holding her new neice. At one point Becca asked us to hand her Kate Noel while she was holding Shaylan.  There was much comparing going on as she glanced back and forth from Shaylan to Kate to Shaylan again. Kate has fallen out of favor! I have not seen Becca want Kate or take her any where since returning home. There  was considerable thinking going on at her twin’s house evidenced by the serious faces, the tightly knit eyebrows and the dark glances being thrown about.  How I wish I could break into that world of thoughts. I tried to draw Becca out on the  issue and was shut out by abrupt happy faces and changes of subject to what was currently playing on her ipod. Interesting tactics.

The Shaylan/Kate Noel reality check.

The Shaylan/Kate Noel reality check.

Even more interesting are the continous verbal surprises we encounter.  Becca has some impressive words in her vocabulary and she has been throwing them out at us. Today I had been sleeping in the recliner. Now it is Becca’s chair bought with her money. Well she wanted to sit there and she woke me up. I knew what she wanted but was playing dumb; curious to she what she would do. I was informed that “You are sitting in my assigned seat.”  I choked and asked “I’m what?’ and she clearly and calmly repeated that I was sitting in her assigned seat.  How can you argue with that?  I stood up and gave her the chair.

Becca with day old Shaylan

Becca with day old ShaylanWhen Becca came to visit at the hospital we had to wait in the corridor for "five " minutes which stretched into twenty. Then had to wash hands in the room and no sooner had we handed Shaylan to her than a nurse walked in the door and announced that Shaylan had to go for her hearing test. I hadn't even managed to get the lens cap off of my camera! Well they let us snap our pictures before wisking Shaylan away. Oddly though when she came back Becca refused to hold her again. What we managed to hear Becca mutter under her breathe was "I'm not going to drop her." Becca had been struggling with shunting and head preassure pain since the day before when they had reached the highest point on rt 80. Her left arm was also visably more shaky than usual. It was the first time I can recall Becca being aware of her limitaions in regards to another persons safety.

Finally feeling comfortable.

Finally feeling comfortable.

Just Shaylan

Just Shaylan

Hello Everyone!

Saturday, November 28th, 2009

Becca is still highly excited about her doggie in training.  She carries the pictures I printed for her literally 24/7.  Sleeps with them and takes them everywhere. Occasionally she sets the book down and then forgets where it is. Everything  stops till we locate it for her once again. 

My apologies for leaving you out in the dark for so long. I have been down with an acute respiratory illness for two and a half weeks.  I have not seen anything that bad since Becca had pertussis in 1990.  Thankfully she had a much milder illness this time only lasting five days and not one tenth as violent as what I endured.  This past week (as I have been regaining my strength)  has been spent catching up on the never ending sport of paper work. You all know the drill; bills, medical forms,  junk mail, etc… 

Things are progressing well towards our August due date.   November 6th I had the chance to share about 4 Paws for Ability with our parent support group. We had a woman promise a large kennel for us, another friend said I could put the money I owed her for a plane ticket towards our current needs, a third friend did all the leg work for those eighty shirts I need to help train the dogs to seizure alert so when a good deal came along at Joanne Fabrics I  knew it was the best price available and moved on the sale. Would have missed that oportunity with out Jeanne’s help because I was way to sick to even start looking myself.

Today I had a phone call. There is local family who had decided a couple years ago to pool the money they would spend on small gifts for extended family members and choose a cause/charity to give it to each year. They have chosen to help us!  We will put the money towards fencing the yard this coming spring so it will be ready for our service dog. 

God is Good and the love of his people overwhelming.

I am still very tired will write again.

Excitement ~ Excitement

Wednesday, November 4th, 2009

Becca is so excited I have taken fourteen pictures of dogs in training and put them on one page. We say it might be one of these or it might be one of the others but at least she has some dogs to show and tell about. You should see her light up every time someone talks to her about the doggie pictures

 

I have started making up little ditties to channel her enthusiasm.

This one goes to the tune of One Little, Two Little, Three Little Indians.

 

(One Little,   Two Little,      Three Little  Indians)

 Rebecca     just can not   wait     till   August

 Rebecca     just can not   wait     till   August

 Rebecca     just can not   wait     till   August

(Ten           little               Indian        boys)

 To             know which    puppy       will be   hers.

 

 Could you   tell us       for Thanksgiving?

 How a         bout a       Christmas present?

 We would    like a         Happy New Year!

 Which         little            doggie     will be hers?

 

 Is he         all white?      Is       he      all black?

 Are there   brown spots on     his      tall back?

 Is his        fur fluffy        or     is it     curly

  Humm, ~   Maybe           he’s a       she.