eSpecially Ben

For the past three years, Ben has been on the bus with the same brother and sister. Since they get on before Ben and after he gets off, I see them twice a day and have become friendly with them. About two years ago, we had them over for a playdate. Their Dad came too. Ryan and I learned about their tough circumstances. In the short time we spent with this family, it became obvious that the Dad worked hard to make their situation work. Although I tried many times to get the kids together again, it never worked out. Over a year later, on Halloween, the Dad stopped by our house. To ask for a relatively small amount of money. I gave it to him and asked that instead of repaying us, he bring the kids over for a playdate. He agreed and they came the next week. Then six months later, the Dad stopped by to borrow a tool for a job. We gave it to him. Today he came by and left us a note explaining that he was going out of town. I guess he was letting us know he still had the tool and

Our neighborhood recently won an energy grant . While some of the money went to weatherproof homes, our neighborhood association, in keeping with our art theme, had 7 bicycle racks made for the the most frequented locations in the 'hood. Each were designed by artists and then painted at a special public event called, Pimp My Rack. Everyone was asked to help paint this dog, a bicycle rack doing to, what elese, but our local dog bar. This artist used stippling , basically using special brushes to paint dots all over the sculpture. Many kids added their mark. Our local coffeeshop, Smelly Cat, will boast this very cool cat.

 I mentioned in my original post that we found a new doctor that has adjusted Ethan’s medicine, making his quality of life drastically better. Though, he currently has entered another flare up, Ethan had 35 DAYS fever free with a significant decrease in pain!! Though I am sad that he is not feeling well again and the doctor did tell us he would still have set backs, he has NEVER seen more than 1 day in his 28 months of life without a fever and/or pain! So he is finally making strides and moving in the right direction! His frequent doctor visits and many procedures have FINALLY paid off! Ethan is like a different kid!! Once he felt better he did things physically, cognitively and communicatively he was not able to do before. One day he actually climbed into his booster seat at the table all by himself. Another day he fed himself more than 2 spoonfuls of baby food without spilling. He will only eat certain textured foods and still eats stage 1 baby food due to sensory issues and abdo

Ben has his own Convaid Stroller now, and at the suggestion of his school physical therapist we added these "big wheels" to the order. These special wheels easily attach to the stroller without having to remove the smaller wheels. Ben's private PT is trying to teach Ben how to use the wheels, but his hands seem to get caught in the spokes. I also think they may be set too far back for his arms, although I have had Logan test it out and they seem to work fine. It is possible that if Ben sat up straight in the chair, he would have a better angle for propelling himself. Ben gets the concept and can move short distances, but his preference is to be pushed. No surprise there! The wheels are great for when we have long walks over rough terrain. They are much easier to push and provide a smoother ride for Ben. And then there's always that great smile...

Wordless Wednesday are featured on sites to promote photography. Join in the fun. Or if you need your photos to be accompanied by lots of words try Wordful Wednesday at Seven Clown Circus .

Last week, a one-man camera crew followed around our family for the evening. They caught everything on camera – Ben’s therapy session with OT and Speech, a chaotic dinner of Domino’s pizza on paper plates with the big treat – lemonade, crazy wrestling with all three boys and Ryan and then a trip to the YMCA for Ben to play basketball in a pick-up game. They interviewed Ryan and me too.  From what I understand, this will be used on a website for Attainment Company , a company that publishes materials used by teachers, schools and therapists for children with special needs. The Attainment Company wants to offer these materials to families and parents at a discounted cost to be used inside the home. This video will be a way to make connections with other families in our same situation. (Ben was in their literacy video.) But it got me thinking – they have every type of reality show on right now – but what about following a family with special needs? There’s plenty of drama, comedy and si

Several weeks ago a huge storm came through our neighborhood. Unfortunately, a very large tree took down a neighbor's home. The next day when the tree company was cutting it down and turning it in to mulch, I asked to see if we could have some delivered to our house. This is what we got: Let's just say, Ryan has gotten a lot of mileage out of this one. The guy said there would be a few stumps...and I did run it by Ryan before they delivered it...and we could use some stump seats for around the fire...and you can never have too much mulch! Anyway, Logan has come to my rescue and many hours have been spent decorating the stumps as birdhouses - complete with glued down rocks, leaves and bark. He added birdseed because a house has to have food. And to top it off, Logan has witnessed birds eating from his birdhouses. As for Ryan, he just chuckles every time he walks by the pile. Need some art inspiration for your household? Check out 5 Minutes for Special Needs every Monday

When people meet Sophia, the first comment we usually get is about her big beautiful blue eyes. They are very expressive and her spirit shines through. Her eyes speak even when she can't. Sophia really loves being around people and socializing. She communicates by using some words and by the cute sounds she makes. She typically finds a way to get her point across. Sophia loves to laugh, sing, hang out with family and splash around in water. Her all time favorite thing is listening to music and dancing around in my arms. It is one of my favorites too. Sophia has a really sweet personality and is very accepting of others. But don't be fooled by sweet and petite Sophia. She has a fiery side. She is very sassy and will let you know in a heartbeat if she doesn't like something. Like most two year olds, she knows how to roll her eyes and scream if you ask her to do something she doesn't want to do. She can say some things perfectly, especially if she wants it immediately.

My son, Tye, has occasional sensory issues that can overload his system. When this happens, my husband and I have witnessed Tye's very own, "Wolverine" manuever. Like Hugh Jackson's character in the X-men movie series, Tye will be walking with us in the mall and suddenly have the need to put his back flush against the wall and not move from that spot, looking around anxiously or with a huge grin on his face.  We call it "the Wolverine" because in the first X-Men movie, when Hugh Jackson's character woke up in the lab at the school he rushed to the wall with his back to it looking around, trying to figure out what was going on.  We never know when it will pop up or just what will set him off.  Could be the lights, decorations, the acoustics...we haven't quite figured it out yet.  Sensory issues have made life a bit interesting at times.  I never thought I would become a pretty good hairdresser. Tye can't tolerate the buzzer by his ears or nap

Samson’s Winning Run Of course it was raining, not too hard, but the black sky sailed in fast. So many treasured moments unfold under rain. Today the rain fell on my son running the 100 meter race at the Special Olympics. What he actually did was not exactly running – more like walking at a moderate pace, just slow enough to smile at all the people cheering him from the side of the track. Most of the people cheering I didn’t know, but he gets around and he gets known. Samson really has absolutely no competitive spirit. None. He doesn’t care what sport it is, what kind of ball he is supposed to be throwing. For him, it’s only about the sheer thrill of the instant when everybody’s eyes are on him. Those are his winning moments. When he was younger, on Wednesday afternoons, I would take him to ride horses at a farm for hippotherapy . When the sweet horse would quicken into a gentle trot, Samson would let go of the reigns, his arms waving in the wind. The trainer would stop, of course,

We needed to get a hold of our expenses so I suggested that we go cash only. I thought I was a genius when we started this, until a friend told me that Dave Ramsey , a financial guru, has been talking about this for awhile now.  Hmmmm...another clever idea stolen!   Ryan agreed with my plan and we both gave up our debit cards - meaning we canceled them completely.  We are over a month into this experiment, and it may become a way of life for us because we are spending ridiculously less money. And we were fairly frugal spenders before we started. To begin, we ate everything in the pantry and freezer. I realized I am a collector of food. I like to have it around just in case we might need something for a recipe. Now I am planning out our meals and buying what we need for the recipes for the current week. I actually use a calculator as I walk through the store so I do not go over my allotted amount. We each carry a credit card hidden deep in our wallets in case of an emergency. So fa

Wordless Wednesday are featured on sites to promote photography. Join in the fun. Or if you need your photos to be accompanied by lots of words try Wordful Wednesday at Seven Clown Circus .

Last time I wrote about Ben's seizures, we were increasing a current medicine to see if it would stop the seizures without having adverse effects on Ben. When Ben became a zombie over spring break because of this new dosage, we quickly activated Plan B and started an entirely new medicine. After almost three weeks on this new medicine, Ben is not totally seizure free, but he is having them less frequently and his energy level and personality are back. And to demonstrate that he is feeling 110% - Ben has been repeatedly opening the door to his brothers' room and climbing in bed with Sean. At 11pm. At 11:30pm. And when Ben is told he cannot throw his brother out of bed, he laughs. So Ben is back with almost no seizures, a seemingly good medicine, and he is up to his old antics again - crawling around the house, standing at counters, climbing on beds, chairs and sofas. When Sean tells anyone who will listen how Ben threw him out of his bed twice, I sympathize with Sean an

Thump! Thump! Thump! "May I juice?" says my son, standing next to my bed. I reluctantly open my eyes, praying it is not still dark outside and that it's a reasonable time to start the day, hug my sweet boy and say "What do you say to Mommy in the morning?" He shouts "G'morning Mommy!" in reply. We make our way downstairs where he gets his game system and orders the curtains opened. I obey, then prepare his juice and cuddle up beside him on the couch enjoying the precious time when it's just the two of us. After a game (or two or three) he heads into the kitchen to turn his "Music on!". We then sing and dance together. These days I am serenaded more often than I sing. Little else brings me such joy as hearing my son, who struggles for words, sing out loud. When it's time for coffee, my son insists on pressing the buttons, measuring the coffee and sugar, then fetching the milk from the fridge. He loves to help and is somew

Another one of Ben's famous art projects done with his hands. Need some art inspiration for your household? Check out 5 Minutes for Special Needs every Monday . And if you have a little artist in your home, link up and share with others.

Hi,   I'd like to introduce you to Ben and tell you a few things about him.  He's a very happy child, nonverbal but makes lots of sounds to express his likes and dislikes.  We are continuously working on weight baring and strengthening his upper body.   A typical day for us is to wake up around 6am in order for Ben to ride the van to school.  I pick him up close to 2pm everyday, unless he has therapy, because he doesn't have much energy after 12:30pm.  I found that if I push his body too much, it weakens his immune system and he becomes sick.  Common sense really helps during times like these.   Once he's home, I keep him out of his wheelchair as much as possible and we play.  It's really physical therapy, but he thinks it's play time.  Good.  If he's too sick to lay on the floor because he has lots of drainage issues, I'll take him for a ride in the car.  He loves 18 wheelers, singing, people who talk loud, and going through the drive thru. 

Denise  Luke is a sweet three year old with CHARGE syndrome. He has had a rough start in life with multiple surgeries, hearing loss and developmental delays. Despite all his challenges, he almost always has a smile on his face and a deep laugh which is very contagious. As I mentioned in my first post, Luke has facial weakness on the right side of his face which makes his smile lopsided. About one year ago, our family traveled to Houston and Luke underwent a 10 hour procedure to graft his masseter (chewing) nerve to his weakened facial nerve. After waiting almost a year for the graft to grow Luke can now make a full smile when he bites down and clenches his teeth. It is sometimes hard to see the success of the surgery since Luke cannot understand what he needs to do to activate his new smile. We still see the same lopsided smile each day. On the other hand, when Luke is able to make the correct facial movements to evoke his new full smile it is extremely exciting for us to watc

Last month you were introduced to nine women who have remarkable stories to tell about raising a child or children with special needs. Although I know most of these women well, I learned more about their struggles and triumphs through their words. Comments posted on this site, Facebook and ones I have received privately have been positive. One writer shared that these are stories she had wanted to write, but did not have the forum. In other ways, connections have been made between families and resource information has been shared. I am encouraged that this series is bringing readers and writers together to connect, share and possibly inspire one another. This month each woman will write about their child or children with special needs - likes, dislikes, joys, difficulties...really anything they see as important to help you better understand their child. And if you missed the start of the series...catch-up here.

I am sure I know who was happiest getting their photo taken with these two world champion swimmers - his smile is hiding behind Ben. The YMCA offers a program every spring break called YSplash, a free national program to help teach children to swim . Our Y's aquatic coordinator was able to get Josh Schneider and Nick Thoman to begin the program, sign autographs and be available for intense questions from inquisitive dads. This was Ben's first year participating in this program. Ben had one staff person dedicated to him while he was in the water. It was a tough week because of seizure activity, but I still think Ben had some fun. Check out when the YSplash is scheduled in your area.

A local private high school has been hosting the Mecklenburg County Special Olympics for many years. The students get the day off from classes to volunteer as a buddy to one of the athletes. Ben was lucky again this year and had two students with him for the day. We watched the motorized wheelchair race. And this foot race. Smiles and cheers for everyone that day. Next year when Ben is eight, he will be able to compete in one of the sports. I look forward to this!

These gifts are from Ben. Need some art inspiration for your household?  Check out 5 Minutes for Special Needs every Monday .  And if you have a little artist in your home, link up and share with others.

Help raise money for Special Olympics by watching this video. Proctor and Gamble will give $1 for every "like", share or comment. Here's a link to the Facebook Page: Thank You, Mom!

The other day when paying for gas inside the store, my three year old asked for a treat. I said no and before Sean had a chance to complain, a man whipped out a dollar bill and gave it to him. I protested, but the woman with him said, "He does this all the time. He likes to." We thanked the man, Sean chose M&M's and we went on our way. At the time, I thought how nice it was of the man to give Sean the dollar. From outward appearances, he did not seem to have a lot and a dollar may have been a sacrifice. As the day progressed, a few more thoughts came to me about what had happened. One, I do not love someone, especially a stranger, undermining my authority with my child. Two, and most importantly, I do not want Sean becoming comfortable taking money, treats or anything from strangers. Finally, I thought about how in this day and age, it is a shame that I have to go through this whole thought process. Couldn't the scenario just be: nice man gives boy a dollar, b

While running on trails at the US National Whitewater Center , we came across a Snapping Turtle , at least a foot long. After close examination, we realized its long sharp toe nail was stuck on the bamboo reed, making it impossible for the turtle to move and a sitting duck for any predator. We unstuck the toenail and hopefully, he made a beeline for the nearby lake. Special Exposure Wednesday and Wordless Wednesday are featured on sites to promote photography. Join in the fun. Or if you need your photos to be accompanied by lots of words try Wordful Wednesday at Seven Clown Circus .

On at least three occasions, we have found food or left over cheese wrappers hidden under Ben's bed. Today we found a bowl full of an entire package of pepperoni there and by the looks of it, it had been a few days. The culprit? Sean, our three year old. Rather than overreacting, I have asked Sean some questions to try to understand his behavior - Is he hungry? Does he know he can come to Mommy or Daddy for food? Does he know he can not eat in bedrooms? Besides being able to tell me that the food is for him, not Ben, I am not sure what is going on here. I just looked at a few sites about hoarding food and it sounds like at this age, it can be common for children to collect things. At an older age, like 7, it can be a controlling parent issue. If the child has had a time in their life where food was scarce, they may also exhibit this behavior. And when a 40 year old mom hides her favorite candy, Milk Duds , a special present from her own mother, well that's just normal.

Rocks, paint and some googly eyes make for an easy art project.  And the maintenance is much less than a dog, cat or even a fish. Need some art inspiration for your household?  Check out 5 Minutes for Special Needs every Monday .  And if you have a little artist in your home, link up and share with others.

Samson was born pink and healthy, with a content disposition that made those first days with him dreamy. His earliest weeks home were a wonder. His presence in our small house was bigger than life. Every flat surface was covered with his things – diapers, wipes, burp cloths, sterilized bottles, and the many lists that I made to record every ounce of formula he drank. He didn’t cry, as I was assured in birthing class, to let me know he was hungry or wet. I came into motherhood on a pretty thin line of confidence. I did what I could - I trusted God – I followed His direction, learned to trust my fragile instincts, and fell hopelessly in love with all of my heart. The earliest days were peaceful, almost pastoral. Samson napped in a cradle handmade for him, and I put it near a window close to my desk. As I worked, the sun would filter through the leaves outside the window, bathing his sleep with dappled light. After that hottest summer, shorter days turned colder and the first falling le