eSpecially Ben

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: Positives 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", ...

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.

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.

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.

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...

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.

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 m...

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! Directions • 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 cardboa...

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.

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.

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.

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 seri...

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.

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,...

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.

Ben and Sean in search of the perfect tree.

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 ...

On the Wednesday before Thanksgiving, one of the moms in our family group facilitated a story time and craft project with ten children. The book was about the Thanksgiving Holiday. The mom, a former kindergarten teacher, did a great job of getting each child and parent to tell the group what they were thankful for this year. Children, husbands, family, friends, toys and brothers were some of the things mentioned. My four-year-old was thankful for his bones and the whole world. The group also sang a song, Ten Little Indians . Then they made Native American Headdress with construction paper, markers, glue and feathers. Although Ben helped make the headdress, he was adamant about not wearing it. Logan, his brother, is modeling it in the photo above.

Ben was invited to a Chuck E. Cheese birthday party last Saturday. He was using his walker to get around. Within the first few minutes, I spotted the Bob the Builder/Scoop Ride and led Ben in that direction. Let me give you Ben's history with Bob and this ride. Ben is the BIGGEST Bob the Builder fan that has ever lived. He owns just about every movie, piece of clothing, bedding and doll, and has seen "Bob Live" on stage. At the last Chuck E. Cheese party he attended, Ben spent two hours on the ride, and he gave Bob a big kiss at one point. I was not there for that party so I wanted to see Ben's reaction today. So back again to Chuck E. Cheese. When Ben was about four feet from the ride, he stopped and decided he did not need a walker. He let go and took 2-3 steps on his own before falling and hitting the ride with his head. Let me say it again: Ben took 2-3 steps on his own. I was behind Ben when it all happened, and I was concentrating on him falling that I r...

"An Extraordinary Pose" This may look like a very ordinary photo, but it is not. Ben is standing at the table on his own. Ben is six years old and it has taken him years of hard work, determination and many falls to get to this point. Even we, as his parents, will eventually take this photo for granted and not remember when this was such a struggle for him. But right now, I relish in the fact that he can get up on his own and try to steal a bit of his brother's lunch! Special Exposure Wednesday 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.

We are so fortunate right now to have a group of therapists working with Ben that are incredible. They are motivated to work with Ben, and they create a fun atmosphere while still challenging him. In turn, Ben is working the hardest he ever has and without many tantrums and poor behavior. For the first time, I am not on the lookout for a new therapist. The “Dream Team” comes to our house every Wednesday to co-treat speech and occupational therapy. Ben is genuinely excited to see them when they walk through the door. When you take his hands to walk, he leads you to his room for therapy to begin. Using behavior and play therapy, and combining speech and occupational therapy techniques, they have come up with a solid format for each session. They use a token board to reward his work and when it is complete, Ben can watch 2-3 minutes of a video. They have had to be flexible too. One sunny day, Ben did not want to leave the front porch, they changed the plan to an outside therapy session....

Ben, Age 6 Ben brought these pieces of artwork home on Friday. I am excited to have Thanksgiving decorations to put around the house! These will be keepers.

When Ben started school when he was two years old, my mom said, what I thought at the time was, the strangest thing. She said, “Make sure Ben always looks neat and is clean.” Like any daughter might, I thought she was crazy. Why of course Ben will be neat and clean, I would never let him out of the house any other way. Four years later, I still think about that comment. I make sure that Ben looks his best everyday – his hair is neat, clothes clean. There was a time when I gave Ben a bath every morning before school so his hair looked just right, but I gave that up after son #3 was born. And I realized it was a bit obsessive too. Now I keep his hair short and he gets a bath and a shampoo every night. Ben does have beautiful yet unruly hair. Our children with special needs may look and act differently, raise eyebrows and get stares. The last thing we want is for their hair to be a mess, clothes dirty or disheveled. I get what my mom was saying - Ben's different, but don't mak...

My friends and I were saying the other day how easy Carol Brady had it on the TV show “The Brady Bunch.” She had Alice to grocery shop, make the kids lunches, do laundry and housework. If I had an Alice, my mornings would be calm, not the tornado-like, clock-watching, running around, losing-my-mind type that I face every morning. On Friday as Ben was getting on the bus, I commented to the bus driver that I may have overdressed him because it is hot outside. The bus driver looked at me funny and said that it was very cold out. Then I realized I had run a mini-marathon inside my house digging up shoes, chewies, coats, breakfast dishes, homework and anything else that fell in my path. With that being said, I do have a routine to help us have good mornings. And to my credit, we have never missed the bus yet, although we have come mighty close. Here are some simple tips I follow for a successful* morning at our house: • Plan the clothes out the night before. I set everything up so that I...

In October, Bendigo at Bendigo's Rage bestowed The One Lovely Blog Award upon me. It is a wonderful way for blogger's work to be appreciated and at the same time increase readership. At the very least, it makes someone feel very special to be chosen, I know I did. There are rules to this award: 1. Accept the award; 2. Post it on your blog together with the name of the person who has granted the award, and his or her blog link; 3. Pass the award on to 15 other blogs that you've newly discovered; and 4. Contact the bloggers to let them know they have been chosen for this award. Instead of posting all 15 blogs at once, I am listing a few at a time. I said in an earlier posting that I do take this seriously so I have been reading to find what blogs I want to list. I have found a few more. These blogs were chosen because I found them interesting in content, the writer's background is different (than me) and after going through blog after blog, they made me st...

Fall Leaves by Ben, age 6 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. Ben used Crayola Twistables Slick Stix - super smooth to create this art work. It is hard for Ben to put pressure on paper, but these crayons are magical. All Ben has to do is touch the paper with the crayon and a large mark is made. I bought them at Target for a reasonable price! I cannot take credit for finding them, Ben's teacher discovered them and I got some for use at home. And as long as I am confessing, he did this artwork at school too. Enjoy!

I am not talking about sugar-free candy, no calorie cakes or eating your way through the holidays with celery and carrot sticks. I am talking about getting rid of the pressures we all put on ourselves to have wonderful, perfect holidays for our families and children. There are ways to make life simpler during this hectic time. Most of us avoid them because it may mean taking a risk and changing the way things have always been done (and our mother might yell.) Here are some ideas that have worked for us: Gifts – I know for our son, Ben, who has little interest in toys, finding presents for him to open during the holidays is a challenge. The little voice in my head keeps saying, “What will Ben open? What will Ben get excited about?” Changing our expectations of Ben being excited about gifts helped quite a bit. We ask grandparents to pay for tickets to the circus, which unexpectedly has become a tradition. Some of the best gifts for Ben are movie passes and gift cards for ice cream...

In 2006, three families started a neighborhood club. At that time, our main reason for forming was to setup a babysitting cooperative. I would watch their child one afternoon and then they would repay me the next day or week. The group has since grown to 25 families, a website, guidelines and all types of activities and annual traditions. Today, school was out so I put out an invitation for parents to come over with their kids to make turkeys using felt, feathers and glue. In the end, the house was full of seven boys and one girl – running around, creating turkeys and watching movies. Ben was in the mix of all this, although he absolutely refused to make a turkey or watch Peter Pan. He followed the crowd or spent time in his room watching “Bob”, depending on his mood. On three separate occasions, Ben pulled the little girl’s hair. In his defense, she has lovely hair and the first two times, it was within inches of his hands. The last time, she had learned her lesson and sat a dist...

Let me start this off by saying that I am the kind of person who will make a “to do” list that will include “Plan something spontaneous.” And I see nothing wrong with that. I received a call two weeks ago from my son’s case manager. Her supervisor, as part of her graduate school work, started a non-profit organization, called HOPE (Helping Outcomes for Parents with Exceptional children.)   The mission of HOPE is to promote healthy relationships for parents of children with disabilities by providing opportunities to engage in activities within their community. Providing parents with the opportunity to embrace and renew their partnerships to be strong for their children and maintaining the family unit. (Taken from their brochure.)   So the call I was getting was to ask if my husband and I would be willing to go on short notice the next week - Thursday and Friday to Myrtle Beach. I didn’t say, “Hell, YES!” – I am way too polite for that, but you bet your ______, I was thin...

A few things happened yesterday that amazed me. At our neighborhood Halloween Festival, Ben was taking his usual rest from his walker by plopping down on the ground. His 1½ year old brother came up to him and offered his hands to help Ben get up. Then Raggs  arrived. He is a 7 foot tall dog who has his own show on PBS. Ben watches this show often. When it came to Ben’s turn to give Raggs a hug, he would not let go. I mean he really would not let go. Ben was giving Raggs probably the best hug he has ever received. After peeling Ben away, Raggs kept coming back to Ben for more hugs. Their final farewell was sad to watch, Ben did not want to leave. I was amazed by the kindness that both Sean and Raggs showed Ben. It started me thinking about how many people helped us get through Ben’s surgery and week of recovery. We had friends who picked up Logan from school, brought us dinner and told us to call if we needed anything. Grandparents offered to help. My sister sent a gift card to ...

One of my very best friends from a long time ago called me last week to talk about her baby who is undergoing testing for medical and developmental issues. Understandably, she is upset, sad, tired, discouraged…all the normal feelings you have when you find out your child has special needs. In the middle of her sharing about her difficult time, she apologized for not being there for me when I was going through the same thing several years ago. She told me she never understood what I was going through until now. She wished she had been a better friend to me back then. I was dumbstruck when she said it. I kind of blew it off and told her not to even give it a second thought. And I meant for her to not give it a second thought. I, on the other hand, have given it many thoughts. I even cried when we got off the phone (and remember I am not a crier.) For someone to say what she said to me meant a lot. I have no anger or bad feelings to anyone who does not understand what we we...

Many times during our life, if we are truly challenging our own personal growth - we will come face-to-face with our own prejudices. I have had several in my 39 years – one of the first was when I moved to the south when I was 17. I had some fairly strong stereotypes about Southerners – and very quickly at the university I attended, those stereotypes were laid to rest. In my more recent history, I was struck by my prejudices about children with special needs. When first researching classroom environments for Ben, I definitely had the notion that he would only benefit from being in an inclusion class. There are many reasons parents want their child in inclusion – it is more “normal”, curriculum is rigorous and if your child is going to learn from their peers, you want those peers to be typical. When it was all said and done, Ben’s best placement was in a self-contained classroom, a class with a teacher trained in special education with two assistants and 9 children, all with differi...

Ben is home and recovering very well from his surgery on Friday. I am physically tired and emotionally drained from the entire experience. I think he feels better than I do from the amount of energy he seems to possess. Thank you for all your well wishes, prayers and good thoughts - Ben received all of them and perhaps that is why he is ready to party while we are ready for sleep. Good night!

Aunt Olivia & Ben Ode to Tonsils Think of all the organs used in our creation, That are so easy to get rid of with a simple operation. Tonsils, gall bladders and our extra kidney, Are not as important as say our heart, lung and knee. Adnoids are up there with things that are purpose-free, Hopefully Ben's didn't grow back, that will add to the doctor's cutting spree This Friday, Ben's tonsils will be last seen, Hey, what happens to the thing that hangs in between? Love, Aunt Olivia Ben is having his tonsils removed on Friday, October 23. His deviated septum and other nasal issues will hopefully be fixed too. Please keep him in your thoughts and prayers.

After two brain scans, genetic testing, three neurologists, a developmental pediatrician and Duke Children’s Hospital, we gave up on the idea of a label for Ben's disability. About 25% of children with special needs supposedly have a “non-diagnosis.” We were fairly comfortable in this category. Plus the searching was getting expensive, disappointing and tiring. On our fourth neurologist, we hit the jackpot. I brought Ben’s 2 MRI scans with me. Before seeing us, the doctor reviewed them. The neurologist walked into the room with a few brochures and said, “Ben has hypoplasia of the corpus callosum.” The doctor explained about the organizations involved in research and support, and she suggested we sign Ben up for the study in California. I read the brochures and sure enough, Ben fit. Hypoplasia of the Corpus Callosum in plain language means the bundle of 200,000 nerves that connects your left and right brain (corpus callosum) is thin (hypoplasia), about 60%. For some reason the...

In keeping with the tradition of the "One Lovely Blog Award" and passing the torch to 15 other blogs, here are my first four. I took my job seriously and read through many blogs, probably too many because I had a nightmare about blogs in the middle of the night. So after careful reading and consideration, I would like to pass "One Lovely Blog Award" onto the following four sites: • http://www.upnorthmommy.com • http://www.5minutesforspecialneeds.com • http://lovethatmax.blogspot.com • http://www.cchs.org/blog I chose these blogs because I think they have a writing style that is open and honest while being informative. Try them out! The rules, upon receiving this award, state that you must: 1. Accept the award; 2. Post it on your blog together with the name of the person who has granted the award, and his or her blog link; 3. Pass the award on to 15 other blogs that you've newly discovered; and 4. Contact the bloggers to let them know they have ...

Two weeks ago, I read a website about a little baby who has severe facial abnormalities that are fairly uncommon. The parents, who seem to be amazing advocates, were able to introduce their child to the town with an article in the local paper about her disability. The parents hoped to make introductions simple – they said, we’d love for you to come and talk with us, but we welcome a wave hello too. They were positive and open, and they gave easy instructions for friendly neighbors on what to do if they were seen out and about town. Most people do not know how to react, what to say, where to look. So rather than be uncomfortable, they just ignore the whole situation, which comes off as being rude and ignorant. Or if they do take the risk and talk to the family, they may ask a question that may not be taken well by the parents. When I was in college, I roomed with someone from St. Croix. My first comment to her parents was, “So your daughter is an international student.” Her wonder...

When I started this blog just a few short weeks ago, I did not expect to find a community of support. To tell you the truth, my knowledge of blogs was extremely limited. Last week, I looked up blog etiquette to make sure I was not offending anyone with what I was writing, saying or posting. I have emailed my cousin in desperation looking for technical advice. So I am very new at this. Today, I received this "One Lovely Blog Award" from a fellow blogger. I am touched. I am happy to be part of this group of warm and fuzzy people who support one another and help get each other's messages out. And the funny thing is, we are basically strangers to each other, until we read a blog and identify with someone through their funny story, sad experience or goofy mistake. I know it is a cliche, but "It's a small world." When you receive this award, there are rules to follow (and I love rules): Accept the award; Post it on your blog together with the name of the p...