Thursday, December 31, 2009

Gadgets and Gizmos - Part 2: Chewy Tubes

Before I knew about Chewy Tubes, I searched for something for Ben to chew on that was not someone's hand, hair or electrical cord, and could withstand the pressure of his biting. I once purchased plumbing materials at a hardware store thinking I could use it for Ben. Then I found (or my mom told me about) Chewy Tubes.

I get a lot of questions about Ben's Chewy Tube. I usually tell people that Ben needs something in his mouth to chew on and this serves as an appropriate way for him to meet that need. READ=Ben might bite your finger off if he did not have the chewy.

If you are unfamiliar with these, I think the official Chewy Tube website does the best at describing their purpose and answering questions: Description of Chewy Tubes

Here's my own assessment of the Chewy Tubes:

  • They do the job - if Ben is satisfied with his chewy, he will leave his clothing and other items alone.
  • Easy to clean. I wash them in the dishwasher.
  • The solid "P", "Q" and red key-shaped (not pictured) chewies last a long time.
  • The "T" Chewy Tubes are hollow and Ben has managed to bite off parts of the "T". This could be a safety hazard if he were to choke. So far, we are not sure where the missing pieces have gone.
  • They are fairly expensive - between $6 and $9 each. Some sites offer free shipping, but the prices may be higher. It may be cheaper to buy larger quantities.
Sites that sell Chewy Tubes - this list includes just a few of the places you may buy them.

Attaching the Chewy Tubes to clothing

I use curling ribbon to attach the chewy to a lanyard with an alligator clip. It works well and so far it is the only thing Ben has not managed to break through or untie. Some children will tolerate wearing the chewy on a string around their neck, like a necklace.

Disclaimer: The equipment and tools I talk about in "Gadgets & Gizmos" is not sponsored by any company. This is not an advertisement for any product.

Wednesday, December 30, 2009

Special Exposure Wednesday: Lights, Camera, Friendship

The week before Christmas, we visited a small town close to where we live, that has a long history of decorating for the holidays. The entire town - businesses and homes - participate by hanging lights, putting out Santas, reindeer and playing music. It is a beautiful sight.

This year we were lucky to get a group together of teachers and their families who Ben has known since his preschool days. One family brought along Ben's former classmate. This photo shows them enjoying a bright reindeer together.

The other photos are from other sites we saw on our walk.

Special Exposure Wednesday, a part of 5 Minutes for Special Needs, is a wonderful way for families to share inspirational photos with others. Each week dozens of sites will post their photos - please check them out.

Tuesday, December 29, 2009

Moving Closer to God

As the children's choir sang on Christmas Eve, Ben got out of his seat and scooted himself closer and closer to the alter. He remained there throughout most of the service, with the pastor and other members of the church moving around him. Ben was quiet, calm and in the moment.

It was a wonderful thing to witness.

Monday, December 28, 2009

Magic Marker Monday: Penguins

Ben brought this home from school. It is an Oriental Trading Company arts and craft kit. Need to use a glue gun.

Magic Marker Monday is a creation through 5 Minutes for Special Needs, a website full of information, blogs and discussion groups. One way to celebrate life is to see it through art, and this site helps us share our children's creative masterpieces. Please check out the site.

Thursday, December 24, 2009

Guest Blogger: Grandma

Grandma and Ben at a sports bar.

I don’t have to tell you how wonderful it is to be a grandparent. All of a sudden it is your house they run to instead of run away from. You receive unconditional love; you get a picture every time you show up; great hugs, kisses and all around recognition for just being you. It is kind of like being a kid again. So there you have it, I am one happy grandma.

Ben was my first grandchild. I think that once we knew that he was medically healthy, I set my mind to getting him to be all that he can be. I think at first I was a little too gung-ho and did not take into consideration the feelings that my child and her husband were experiencing. I was, you have to do this.. this .. and that. That’s just me. I like to find solutions to situations. I want to know the end result. Plus I am a special educator so I know a lot of what is out there. I think I did manage to offer some good suggestions. Vanessa is very good about taking advice, and I appreciate the fact that she does value my opinion. I eventually backed off and now I think we have a good balance of asking first, advising later.
As for my Ben, he is truly a joy to behold. I believe he is a special gift to our family. It is difficult to put into words how wonderful he is. I know he can be difficult at times. I have witnessed a few of those times. But overall, Ben gives something special to everyone he meets. A smile, a laugh, a great big hug (sans hair pulling, please). He loves any attention given by children and adults. He has a special bond with Bob the Builder, something none of us can understand. He loves bananas and peanut butter, a taste he inherited from his great grandfather. He can stand at a table and get himself into a chair. He can feed himself with a spoon. He has excellent receptive language. He can melt your heart with a smile.

Swinging at the park.
So if you see him at the mall, park or sports bar (he goes for the TV’s) stop by and say hello. You will be rewarded with a smile, great interest in your jewelry or glasses or maybe he won’t look at you at all (that’s just him).

So what is it like have a grandchild like Ben? It is as wonderful as having a grandchild like Logan, Sean, Jackson, Ethan and Samantha.

Grandma with all her grandchildren and two daughters.

Wednesday, December 23, 2009

Special Exposure Wednesday: This Santa's not camera shy!

This was a nice surprise to find Santa in our photo.

Special Exposure Wednesday, a part of 5 Minutes for Special Needs, is a wonderful way for families to share inspirational photos with others. Each week dozens of sites will post their photos - please check them out.

Tuesday, December 22, 2009

Possibilities and Disappointment

Last Tuesday, I spoke with two friends who I do not see on a regular basis. One friend shared a dream she had about Ben two months ago. We were all in front of the YMCA walking to our cars, ready to go down a staircase. My friend gave her hand to Ben to help him walk. In the dream, she said, he gave her this funny look, like, "I don't need your help." Ben was walking by himself, a bit hunched over, but walking on his own. I have had many friends and family tell me about this type of a dream, where Ben is walking or talking. It always makes me smile to think that people worry about Ben like we do, keep him in their thoughts and pray for his well-being.

The other friend lives on the opposite side of the city, and we have not seen each other in a few years. She left a long message about a child she had heard about that had similar traits as Ben, and they had found something that helped the child. She wanted to send me the article about it. I have to admit, when I got the message, I definitely blew it off. So many people try to tell us about new therapies, cures, religious rituals and diets that we should try on Ben. My radar always goes up when I get another one. But this friend was determined and emailed me the article, The Boy Who Woke Up Late.

At first I skimmed it, but then it got my attention and I read it all the way through. My heart started racing, my brain went into high gear - it all sounded like Ben. The cord wrapped around his neck, no one sure what he had, no talking or walking. Then I started thinking about signs - the family was from a beach we know well, two friends that I have not spoken to in ages contact me in the same day and mention Ben. I start doing the "what ifs", what if this was all some terrible nightmare and suddenly it would be over. I could feel my emotions bubbling inside and strange thoughts entering my head.

After emails and phone calls to doctors, I found out that Ben most likely does not fit the profile for this particular genetic disorder. Although we will go ahead with some of the testing, I am not hopeful after hearing that he has passed other preliminary tests for this metabolic disorder years ago.

All this took place from 7:30am to Noon on the same day. A roller coaster of emotions for me - from annoyance (of the article) to elation (of the possibilities) to doubt (of this working) to where I am now as I write this - sad. I am sad that I can be completely thrown into the hope of Ben being cured and get so excited and then be so let down in a manner of minutes. I guess I am disappointed in myself for not being happy with the way he is and wishing he could talk to us and walk around like other kids.

I have asked myself the question without ever completely anwering it. If I could change Ben to be a typical kid, would I? Would I give up all the people we have met through Ben, all the experiences we have been through, possibly give up the strength of my relationship with my husband in order to have a typical Ben? It is a tough question, perhaps impossible, and one I am not willing or able to answer at this point in my life.

Monday, December 21, 2009

Magic Marker Monday: Graham Cracker House

This is a family tradition dating back to the 1970's when I was in second grade. My teacher, Mrs. West, taught us all how to make a Graham Cracker House. We used our individual milk carton from school lunch as the base, graham crackers for the walls, Royal Icing as the edible glue and lots of candy to decorate.

Over the years with the help of a carpenter husband, the house has grown in size and intricacy. One year, the roof made from Big Red gum, looked like slate. Now with the kids involved, we make the building and the kids decorate.

For the past two years, we have had a Graham Cracker House Building Party and several families from the neighborhood join us. Each family brings their own house setup and we all share the candy we bring. It's a lot of fun!

• Approx a 12” x 12” cardboard or baking pan covered tightly in tin foil. This will serve as the platform for the house. If you use a baking pan, make sure it is not one you will need soon.

• A cardboard foundation for the house such as individual juice boxes (taped together), box from snacks, cut off the bottom of a ½ gallon OJ or milk carton. This will determine the size of your house. I recommend small for your first one.

• One-two boxes (depending on how big you want to make it) of honey graham crackers – any brand.

• Tape the foundation firmly to the cardboard.

Recommended Candy
• Mini marshmallows
• Tootsie Rolls
• Green leaf candy
• Gum drops, assorted colors
• Red & White Peppermint candies
• Mini candy canes
• M&M’s
• Twizzlers
• Skittles
• Chewing gum – Big Red
• Neccos
• Red Hots
• Chocolate sprinkles
• Rainbow sprinkles

Royal Icing Recipe (The edible glue)
• 3 egg whites - frothy
• 1 lb confectioner's sugar - about 4 cups
• Sift with 1/2 teaspoon cream of tartar
• Add together
• Beat 5-10 minutes until right consistency

Keep covered with a wet paper towel so it does not dry out. It can dry out quickly so make icing just before using. To use, put in a small plastic baggie with a small hole cut in the corner, then use like a pastry bag to let the icing out.


Magic Marker Monday is a creation through 5 Minutes for Special Needs, a website full of information, blogs and discussion groups. One way to celebrate life is to see it through art, and this site helps us share our children's creative masterpieces. Please check out the site.

Thursday, December 17, 2009

Special Treatment

This past weekend, we visited the Polar Express on the Great Smoky Mountain Railway. The train ride is setup like the famous movie Polar Express, based on the book by the same name. The train attendants are dressed like waiters, dancing down the aisles to the tunes from the movie, and a conductor punches each child's Golden Ticket. They serve hot cocoa and a chocolate Santa and then read the Polar Express book over a loud speaker. All the time, music is playing and the train is moving slowly to the North Pole.

Once reaching the North Pole, a small town lit up for the festivities, Santa boards the train to give each boy and girl the magical first gift of Christmas, a silver bell.

Meanwhile, we were seated in a four seat space - two pairs of seats facing each other. Sean, our youngest, sat staring in awe for the first 30 minutes. It was a lot for him to take in especially because he is in love with trains right now. Logan declared "This is awesome, better than Extreme Karate," an afterschool program he hopes to join in January. Ben was really happy and excited throughout the trip - constantly vocal and not happy sitting in one place. He stood on the seat trying to reach other people, lucky for us they were Grandpa and his friend. My husband and I took turns trying to hold him. I was counting the minutes until it would all be over. My body felt beat up from trying to keep Ben situated. It is hard to describe what Ben is like when he is happy, excited, vocal and super determined to do what he wants to do. He is 40lbs of long strong limbs, a grip of steel and willpower that would put a top wrestler to shame. Add to that, his ability to not let up for one second. I am frazzled physically, mentally and emotionally when Santa gets to us.

At first Santa bypassed Ben mumbling something I did not catch and gives our two younger boys the bells while asking them what they want for Christmas. Santa stood in the aisle, leaning over, while Logan told him he wanted Bakugans and a Laser. For a split second, I was annoyed that he ignored Ben.

Then the soft spoken Santa sat down on the edge of the armrest and asked to hold Ben. I was confused at first, but then snapped to attention. Ryan and I quickly got Ben on Santa's lap, and suddenly for a few seconds, Ben got quiet and calm. Santa suggested we take a photo.

It all happened very fast, a few seconds and this moment was over. I had the forethought before Santa even came to us to ask Grandpa to videotape - so I think he got the entire event. I have not watched it yet.

I wonder if you can see me holding back my tears.

Wednesday, December 16, 2009

Special Exposure Wednesday: Look, No Hands!

Logan is four and learning to ride his bicycle with training wheels. His grandpa and grandma visited this weekend and he was showing off his new moves and feeling very proud of himself.

Tuesday, December 15, 2009

Hair of the Dog: Race 1 of 12

In case anyone is catching up on this blog, I have committed to running 12 races in the 2010 year (the year of my 40th birthday) - one per month.

Hair of the Dog is sponsored by the YMCA in Spartanburg, SC. This race is at 9:00am on New Year's Day and it is about a 90 minute drive from our house. Am I crazy? A bit, but there are no races in the city I live in during the month of January. This is the best I could find and the idea of it being on January 1 interests me.

There is an old saying that says whatever you do on New Year's Day is what you will spend most of your time doing the rest of the year. Running could be a good way to spend this 2010. And word just in from my husband, he's considering walking the 2 mile route with the three kids. Okay, maybe this will all workout for the best. Wish me luck, or better yet, run a race too!

Just in case you are wondering, like I was, what the heck Hair of the Dog means - check out the link to Wikipedia.

Monday, December 14, 2009

Magic Marker Monday: Friendship

Ben's class made this piece of artwork.

This week, Ben brought home a lot of artwork, and I wasn't sure which one to choose until I saw this one. The theme is "Friends", and each child added their handprint to the paper. The computer program, Boardmaker was used to make pictures that represent Share, Play, Care, Help and Listen.

A posting this week on 5 Minutes for Special Needs focused on how all kids need playdates and friends. This artwork seemed to be yet another reminder of how important it is.

Magic Marker Monday is a creation through 5 Minutes for Special Needs, a website full of information, blogs and discussion groups. One way to celebrate life is to see it through art, and this site helps us share our children's creative masterpieces. Please check out the site.

Thursday, December 10, 2009

Gadgets and Gizmos - Part 1: TAOS

If you have a child with special needs, most likely, you will also have gadgets and gizmos that help your child learn to walk, talk, eat, drink, toilet train, sit-up straight and a whole host of other skills. Some gadgets and gizmos may be a medical necessity for your child – helping them to breathe, get nutrition or stay healthy. Whatever it may be, it takes time to find out about what is available and then learn the ins and outs of each piece of equipment. But when a real good tool comes along, it can be life changing for the child and even the family. Over the next few months, I am going to introduce a few of the items we have used. I am always surprised to find out about new equipment. I hope to spread the word about things that have been worth the time, effort and cost for us.

The TAOS, Therapeutic Ambulatory Orthotic System, is what I am focusing on today. Not many people have ever heard of it, even physical therapists. It is actually Ben's latest gizmo – and it is seriously a gizmo – he looks like he is an astronaut about to walk the moon when he is all set in the TAOS. Ben gets a lot of “good” stares when he is in it because it is definitely “cool” looking. Kids usually want to know when it is their turn to use it.

Ben has been using the TAOS since August. As you can see from the photos, it is an involved piece of equipment. I am here to tell you that it looks worse than it actually is. It’s very light weight, easy to move, take apart and assemble. It fits in a sedan type of car with pieces taken apart or fully assembled in a mini-van. It can be transported on a school bus too.

It does take time to get Ben setup in the TAOS. First, his tall ankle-foot orthotics need to be on his feet. Then, while laying on the floor, we snap him into the “bodysuit.” Finally, we lift him up and hang the bodysuit, with Ben in it, onto the tall pole. Then Ben can walk around, hands-free.

The PROS: With a traditional walker, Ben’s hands are engaged. In the TAOS Ben has full use of his arms and hands, allowing him to stand at a table to do activities.

Ben must remain in an upright position which from a physical therapy perspective, helps him develop trunk strength, as well as, correct posture. Often in a walker, Ben hunches down with bent knees, using his arms to hold him up. Because he cannot stay in this position long, he ends up resting on the floor quite a bit. This means he cannot "hang" with his friends. (That was a really bad pun.)

Ben can stay in this TAOS for a few hours. If he is motivated, he can move very quickly.

The CONS: It does seem daunting to put Ben in the TAOS because of the steps involved. It is not easy to get him out to use the toilet. Once he is in, it is not likely you will take him out for a brief time and then put him back in.

As Ben gets bigger and heavier, the idea of lifting him onto the pole with the bodysuit on is a scary thought. Of course, in the back of my mind, I hope this will help him build the muscle and strength to walk on his own or use a walker properly.

Ben has access to everything when he is in the TAOS. This means safety becomes an issue. His ability to get to things he never has been able to is exciting, but the idea of him getting to dangerous items is scary. Supervision is still key!

Since Thanksgiving, Ben’s school is using the TAOS three days a week with the school physical therapists and in the classroom during daily activities. Ben’s private physical therapists use it twice per week also. In addition, we use it on the weekends especially if we go to a place like a park, museum or play area with open space. Ben’s occupational therapist has built it in to one of his weekly sessions with Ben, making him gather puzzle pieces in one part of the house and carrying them to another part of the house.

Disclaimer: The equipment and tools I talk about in "Gadgets & Gizmos" is not sponsored by any company. This is not an advertisement for any product.

Wednesday, December 9, 2009

Special Exposure Wednesday: Didn't Make the Cut

This year it took 28 photos to get the "best" Christmas Card Photo.
They were all good in their own way - funny faces, poses and expressions.
This is one of the 27 that did not make it this year.

Special Exposure Wednesday, a part of 5 Minutes for Special Needs, is a wonderful way for families to share inspirational photos with others. Each week dozens of sites will post their photos - please check them out.

Tuesday, December 8, 2009

Taking Care of Yourself

Turkey Trot 2009 *

5 Minutes for Special Needs, a blog I follow, had a posting last week about taking care of yourself. It basically said that we are so busy taking our kids to doctor and therapy appointments that we may overlook our own health. I do know that I need to stay physically fit as well as emotionally stable to handle the stress and physical work that is involved in raising Ben. I am fairly good about taking care of myself - I exercise almost every weekday, I read fiction to relax and get together with friends to unwind and share stories. It is sometimes a struggle to find the time to do the things I enjoy or even fight off the guilt of being selfish.

I ran an 8k on Thanksgiving, not having run a race in more than two years. I forgot the enjoyment I got out of being with so many people also excited to be running. It was exhilarating. The best moment of the race was when I saw two kids pushing their dad, who was in a wheelchair. I wanted to say something positive to them, but I was worried it would somehow take away from their moment.

I have been saying for two years that I want to enter my forties in great physical shape and health. I am turning 40 next November. After reading the posting and thinking about it all day, I was able to put my hopes into a solid challenge.

So here it goes - in writing, with witnesses:

• I am going to run one race every month during 2010. The races will be no less than a 5k (3.1 miles) and no more than a 10k (6.2 miles).

Wish me luck - I will need support to finish all 12 races.

*Photo courtesy of Carolina Snapshot.

Monday, December 7, 2009

Magic Marker Monday: Recycled Art

Ben, Age 6

Ben made this at school from an egg carton. I think it is so clever! I am giving it to our local fire department as a thank you for participating in our neighborhood's Halloween Festival.

Magic Marker Monday is a creation through 5 Minutes for Special Needs, a website full of information, blogs and discussion groups. One way to celebrate life is to see it through art, and this site helps us share our children's creative masterpieces. Please check out the site.

Wednesday, December 2, 2009

Tuesday, December 1, 2009

This too shall pass.

We had a great Thanksgiving. I ran an 8k in the morning, came back and we all jumped in the car to watch the last hour of the parade. We came home and ate pizza (really) and everyone except for Ben and me took long naps. Ben watched a movie, and I read a book. At 6pm, we went to our neighbors to pickup Thanksgiving leftovers, and then watched Miracle on 34th Street as a family. On the scale of holidays, this would have been close to a ten. But as they say, this too shall pass.

By Friday night, something had taken over Ben. He started with his high pitched yelling, which we had not heard in a very long time. When the yelling starts, it is non-stop, loud and pierces the inner depths of your being. In addition, Ben was climbing, grabbing, kicking and out-of-control. His appetite was unending, eating ridiculous amounts of food and drinks.

The items “Benzilla” left in his wake: a broken toilet tank cover, Balmex on the dresser and rug, near crash with my Christmas dishes and an almost burnt hand on the stove.

My psyche is wounded right now. My shoulders are tense, I feel psychotic, guilty and very tired.

I feel psychotic because the yelling/screaming goes through my bones and my brain feels like it has turned to mush.

I feel guilty because we ended up locking him down in his chair for the rest of the weekend. I am yelling a lot at the other kids and my husband because I cannot take the strain anymore.

I feel tired because Ben does not sleep a lot when he gets in this mood. I have been up for several nights.

I was not going to write about this especially when I just checked my email and had all these wonderful comments about Ben standing and taking steps. Right now, I feel like that was a different world, another time and place. Alas, it was only 3 days ago.

I decided to write about this because life is not rosy all the time. It has its ups and downs, moments to celebrate, moments to learn from and some, well, some are meant to be forgotten. But the bad moments do not negate the good ones.

After writing this, I know I can get through this difficult time and be better prepared for the next time. Ben will eventually calm down to his usual self. I will remember that he is a kid just trying to do the best that he can, and that he is not trying to be Benzilla, just a boy with energy, a body he is unsure of and a curiosity about his surroundings and his capabilities.

Above photo taken from: