Tuesday, August 31, 2010

Assuming Conclusions

Many years ago, I heard this story:

A father and his small child are riding in a hospital elevator with another person, not known to them. The child was acting up. In close quarters, it was very disruptive. The father did not address the behavior, did not seem to even notice. As the elevator doors opened, the stranger in the elevator, made a snide comment about the child's improper behavior and lack of parental discipline. The father replied, "I am so sorry. I am just not sure how to tell him that his mother has passed away."

This summer, there were two times where I made assumptions about a situation without having all the information. Although I try to keep the above story in mind when assessing any situation, being human I sometimes jump to conclusions without having all the information. Ironically, in both situations, it was not obvious to me that people with special needs were involved.

Luckily, in both cases, a positive connection was made. After I figured out that the person burping in the middle of the grocery store was not simply being rude, but an autistic adult, out with his parents. I reached out to the Dad after realizing my mistake. We shared a short, yet meaningful dialogue while waiting in line. He shared his blog with me, written years ago. I cherish any knowledge from a seasoned parent who has raised a child with special needs.

My other assumption involved a child who kept staring at Ben at the pool and did not respond to me when I spoke to her. After assuming she was not well-mannered, I learned from her mom that she is speech delayed. Even this turned out well - I was introduced to a potential American Sign Language teacher for Ben.

We don't always have the whole picture. Sometimes we are missing a vital piece of information that can change the outcome of our response to an interaction which could have the potential of being a very important moment in our life.

Monday, August 30, 2010

Magic Marker Monday: Monkeying Around

 With a couple of paper plates and colored foam board, you too could have some monkey business. Ben brought this little guy home from camp.

Click here to see more works of art.

Thursday, August 26, 2010

If Becomes When

When Ben was little we were never sure what his needs would be as he got older. We hoped that he would begin to talk and walk. With such a vague diagnosis, we never knew how Ben's development would progress. The idea of needing to change our home to meet Ben's needs was a fleeting thought. If Ben does not walk, was not something we spent a lot of time contemplating. Avoiding this thought was easier.

Even if Ben did not walk, the future seemed a long way off.

Ben is seven now and the unknown future is here and more apparent.

The physical and financial problems will be major issues for us. When will we make these changes? How will we cope with these changes? Where do we add a ramp? How do we enlarge the bathroom to fit an adaptive toilet? Will our car need to be retrofitted for a wheelchair? How do we pay for it? As difficult as these decisions and financial problems will be, dealing with the emotional issues associated with these changes will be most challenging.

It means some of the hopes and dreams we had for Ben may not come to fruition.  We are saying good-bye to some of the dreams we had for Ben walking on his own.  We have not given up on the possibility of Ben walking, but the realities of a 43lb child being moved up and down stairs, lifted into the car or using a baby toilet for much longer are hitting us hard. I see that he will only get heavier and taller. I do not see some of those things changing. Even if Ben does walk on his own, his endurance will most likely be low.

My other fear is that as we rely on a wheelchair, Ben will get less practice in a walker and be less independent. Will we be giving up on him?

These are hard decisions and they require a lot of thought. I think I have been sad for awhile thinking about all of this. My sister asked a practical, seemingly benign question this summer while walking with Ben one afternoon, she said, "What are you going to do when he gets bigger?" She did not mean anything by it, but it struck a chord with me. I have thought about her question countless times.

What are we going to do? It scares me. Instead of putting my head in the sand, I will start looking into resources, funding sources and possibilities. Better to be prepared for what lies ahead.

Tuesday, August 24, 2010

To Cut or Not To Cut...

That is the question that I am currently stressing about - seem silly to you? Yeah, me too, but I still feel the need to stress about it. Early on in my blog life, I wrote "Dress for Success", a discussion about how important it is to help your child look the best she or he can.

This summer, after being nagged by a few (Ben's Dad and Ben's grandma), not that I am calling anyone out, mind you, I decided to let Ben's hair grow out. I usually keep it very short. It stays neat, no gel or combing needed in the rush of morning chaos.

Now school starts in a week and I am rethinking the whole "growing it out" - I know it is in style, but does it look more messier than "cool?" Will this look make him look odd or strange rather than fitting in with current fashion?

Tonight I asked Ben what he wanted. Funny kid, he reached out and grabbed my nose...And gave me an idea. Ben makes choices very well and he always seems to know what he wants. I am going to show him a photo of himself with short hair and one with long and go with his decision.

Okay, no more stressing.

8 Down, 4 To Go

Let's just say I finished in a respectable amount of time and that I look forward to running in cooler weather. And perhaps it was divine intervention that I forgot to collect my timing chip at check-in...so no one really will know my "respectable" time. You will just have to take my word for it.

To hear how I got to this point, read about my 12 Race Challenge.

Monday, August 23, 2010

Magic Marker Monday: Paper Airplanes

A hot and muggy afternoon with bored kids gave me the courage to drag out this book. It turned out easier than I thought, got everyone involved and had lasting effects because the boys played with the airplanes when they were finished.

Click here to check out other works of art.

Saturday, August 21, 2010

It's a Learning Process

Check this blog entry out from the Huffington Post. It reminds me that we are constantly learning, sharing and giving, especially when we allow our hearts and minds to be open.

Thursday, August 19, 2010

Bad Habit or Good Routine?

How do you tell the difference between a bad habit and a good routine?

For the past several months, at about 8pm, Ben crawls up on the couch with my husband or me, cuddles and falls asleep within the hour. It started out with a lot of oohs and ahhs from us - snuggling with Ben is very sweet. If we move him too early, he gets out of his room and crawls right back with us as if nothing happened.

I do wonder if we are doing the right thing by allowing this behavior. Questions enter my mind - Do I want this same behavior six months from now? Not sure. Would I allow my typical sons to do this? Definitely not.

But then I also think about how life has changed in the past year with respect to Ben's sleep schedule. He is not getting up many times a night due to nasal congestion. He is going to sleep at a reasonable hour and sleeping until morning.

Ben's snuggling could be meeting a need - spending time with us without his brothers. Ben is in school or camp all day, then typically has therapy or a home staff person working with him in the evenings. This is quiet one-on-one time with us. This is his way of communicating this need for special time with us.

For right now, we're sticking with it. Need to re-evaluate again and talk with his behavior therapist. It feels right and going with my instincts has become a good habit for me.

Wednesday, August 18, 2010

Special Exposure Wednesday: Double Whammy

Growing up, my parents gave us kisses on each cheek and called them Double Whammies. Logan photographed our version.

Check out other photos at www.5minutesforspecialneeds.com

Tuesday, August 17, 2010

Imagination Station

Ben having a good ole' time at camp.

Ben attended 6 weeks of camp at Imagination Station this summer, a camp coordinated through the County Parks and Recreation  - Therapeutic Recreation Division. Each week, Ben swam, participated in music therapy, My Gym, arts and crafts and story time. A field trip to local amusement parks and other fun places was also part of their schedule every week.

Because the camp director is educated and trained as a recreational therapist, she understands the needs of children with disabilities. A consistent, predictable schedule was set for the week, but specific activities changed often throughout the day to offer variety and keep the attention of the campers.

Ben loved this camp. When I came to pick him up, he was never ready to leave. One of his favorite places was the playroom filled with tunnels and slides for kids to climb and hide. Although Ben mostly observed the kids running, he enjoyed it so much. So many of his fellow campers would come over to give him hugs, kisses...and an occasional ear for Ben to suck. Really.

On one of the last days of camp, Ben developed a crush on one of the girls, Julie*. I witnessed our not-so-gentle Ben crawl over to where Julie was napping and stroke her hair. When I asked him about Julie, he gave me one of his biggest grins. What a sly one!

* Julie's name was changed to protect her identity.

Monday, August 16, 2010

Magic Marker Monday: Caricature

Camp sponsored a day-long "Camp Fest" with water slides, magicians, dancing and ...a caricature artist.

Click on the image to see other artists' work.

Thursday, August 12, 2010

Rainbow Express

Each year a local church sponsors a week-long camp for children with special needs. This was Ben's 4th year attending Rainbow Express. What makes this camp so different from others is that it is planned through the youth ministry at the church. The teens of the church coordinate all the details, activities, serve as the counselors, and prepare a new puppet show each day. The adults in the church serve as nurses and additional staff. Many take their week of vacation to volunteer at this camp.

Max (Buddy), Ben and Rachel (Counselor)
Over 100 campers attended this year. Each camper is paired with a teenage counselor, and some campers also have a Buddy, a peer who has typical abilities. Ben's counselor was Rachel, a rising freshman in college. Ben's buddy was Max, a another super-cute six-year old redhead.

It really is impossible to describe how wonderful this camp is for everyone who participates, volunteers or parents a child who attends. I do know that Ben meets these strangers on Monday and by Friday, a loving bond is built. At the final performance on Friday, several people I have never met stopped by to say hello to Ben, give him hugs and let me know what a cool kid he is, as if I didn't already know.

Wednesday, August 11, 2010

Tuesday, August 10, 2010

Need Some Inspiration?

My mom sent this link to me recently. It is pretty wonderful and really unbelievable. Take the time to watch the video and then check out the blog: Carlys Voice.

Monday, August 9, 2010

Magic Marker Monday: Fire Truck Cake

Ben's Aunt Olivia and Grandma made this cake for his 7th birthday.

Check out other works of art at www.5minutesforspecialneeds.com

Wednesday, August 4, 2010

Special Exposure Wednesday: Visit from the Local Engine

Ben's 7th Birthday Party: Local Fire Engine Visited Our House (on purpose)

Check out other photos: www.5minutesforspecialneeds.com

Tuesday, August 3, 2010

Gadgets & Gizmos - Part 6: Landeez Chair

We spent last week at the beach near Atlantic Beach in North Carolina. At Fort Macon Park, they have a special chair for people like Ben who may need extra help moving in the sand and water. The chair is made by Landeez.

We were amazed by this chair. It did travel over the sand and in small amounts of water with ease. We bought an inexpensive strap to go around Ben's waist so he would not fall out.  I thought that Ben could go farther in the water sitting in the chair, but it does eventually float...away if in too deep of water.

Ben got tired of sitting in it and wiggled his way under the strap. For the most part, it is a great invention and it made it easier for us to keep Ben safe on the beach. If he had been interested in a long walk on the beach, this would have worked great for him.

Monday, August 2, 2010

Magic Marker Monday: Fire Truck Frenzy

For Ben's 7th Birthday, his guests were given the opportunity to paint a wooden fire truck from Michael's. Ben declined from painting - he was a bit too excited to focus on painting.

Here are some of the artists with their work:

 Jackson, age 6 1/2

 Logan, age 5

 Ethan, age 4 1/2

Samantha, age 2

Check out other works of art at www.5minutesforspecialneeds.com.