Archive for the ‘How do we interact?’ Category

Can we ever help enough?

Monday, March 29th, 2010

I have been sharing with you the exciting gains we have been seeing in Becca.  There are three organizations who are contributing to these wonderful successes with their weekly to daily input. One that gives us a great big booster shot every summer, one that has helped us for the past fifteen summers, and a sixth that we are working with and expect to see great things on an hour by hour basis for the rest of Becca’s life.

I would like to introduce you to each of these wonderful organizations/ministries. Maybe you could plug in and help at some point (we do know how to have fun).  Maybe you or someone you know needs to avail themselves of what these ministries have to offer. Maybe you have funds you can spare to help them, if so I hope we touch your heart.

RRAF is Becca’s Day program www.rraf.org Where Reality is Respect, Appreciation & Fullfillment

S.T.A.R.S. Disability Ministry www.college-church.org/disability Becca has music, bible teaching and social interacting here three to four times a week. Hum and I picked up my green font there need to figure out how to change it back.  Aha, found it, now some practice so I do not loose it again!

FTEA: Beca’s horse back therapy 45 mins a week. www.ftea.org

Walcamp: Becca has been attending since she was nine and insists “It is where I can be myself” www.walcamp.org

Joni and Friends Camp: we get to go with her. www.joniandfriends.org

4pawsforability is currently training a service dog for Becca’s use. www.4pawsforability.org

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.

Spelling it out.

Wednesday, 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.

Comments on August posts

Saturday, October 17th, 2009

I was just reviewing the posts and thought to update you on two items.

When Becca was in the hospital, 8-1 post, we found out that the pharmacist on duty was a friend. He filled the order for 3000 mg of Keppra for Becca, which was being sent to the ER, and knew she was in trouble. We are grateful for his on the spot prayers for her.

In missing Becca not the noise I had voiced concern about the new style of camp this year. After talking with Becca and her friends, and at length with the camp director we are all of the opinion that this change is a very good thing.  Becca had a blast! Even more so than in previous years. One of the many problems we have faced through the years is not having places were there are roll models of appropriate behaviors for a given situation. When you are consistently isolated to a group of people who do not know any better than you, it is harder to grow in social skills.  Well, the handicapped group was not the only group being challenged. The ” normal” kids were growing this summer as well. The director tells of one little girl who had the most objections to having the handicapped group at camp. At first it was easy to be horrified by this child’s attitudes. But as the story unfolds and I heard of the child’s fears of the unknown of those people who were so different than her my heart softened. As I was told of her initial attempts at swallowing her fear and finding the courage to reach out to someone who made her feel totally uncomfortable I found myself cheering for her. It was utterly delightful to know that by the end of camp she was championing her new friends and actively seeking to include them in the days activities. 

Oohh(sigh) that all prejudice in this world could be so easily overcome. Walcamp has been there for years supporting all kinds of kids. This new venture, though very scary even to us, is going to be a blessing on so many levels. May it’s growing pains be few.