Tuesday, May 31, 2011

Benefit of the Doubt

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 would return it when he came back.

It is not in my nature to trust in a situation like this when things do not add up. For some reason, my heart is taking the lead, rather than my unforgiving and judgemental brain.

And the Dad obviously feels a connection to us since he comes back again and again, if not always for friendship, but for a little helping hand when times are tough.

I think of all the people we have in our lives to support us if things got tough. If we had to ask a stranger for help, it would mean that all our resources were exhausted and we had no one to count on. That would be a scary place to be if I had others depending on me.

Please say a prayer for this family.

Monday, May 30, 2011

Magic Marker Monday: Pimp My Rack

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.

Friday, May 27, 2011

May Edition eSpecially Parents: Michele's Story

 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 abdominal pain. While he belted out all the words to “The Itsy Bitsy Spider”, I cried with joy, thinking, “you were listening to me every time I sang to you.” He began to clean up his toys when I started singing the “Clean Up” song. I burst out laughing when he spontaneously busted a move to the background music in the special Mommy & Me group we belong to.

Ethan receives physical therapy twice a week and swim therapy for the pain, arthritis and developmental delays. He actually swam on his own with Coast Guard approved floaties, of course. I think that is the moment I realized that he is going to be okay! The therapist told me that children with arthritis and joint inflammation often excel in swimming because in water bodies are weightless putting no pressure on the joints. She was still amazed because she too saw the “old Ethan”.

Sitting, standing or staying in one position for a period of time was always very painful for Ethan. We actually made it to the doctor in New York City, which is about a 2 hour car drive, without a hitch! Even our 7 hour drive to the NIH Hospital in Maryland was much more tolerable for all of us.

Seeing Ethan singing, dancing, running, sitting, swimming, feeling so well and being so happy is more than I could ever ask for. Even if it is for only 35 days, I will take it but I have a feeling we have MANY more awesome days ahead.

eSpecially Parents is a monthly series featuring nine moms with amazing stories to tell. To catchup, read more here.

Thursday, May 26, 2011

Dude, I've Got New Wheels

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...

Wednesday, May 25, 2011

Special Exposure Wednesday: Why the long face?

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.

Tuesday, May 24, 2011

Special Needs Reality TV

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 situations in our life to make it something an audience would want to follow.

Not sure I would want someone following us around all the time, but for one night it was fun. The spotlight was on our family – the boys learned about cameras and big lights. It felt special for us to have our time together recorded.

Sunday, May 22, 2011

Magic Marker Monday: Making Art Out of a Mulch Hill

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?
And if you have a little artist in your home, link up and share with others.

May Edition eSpecially Parents: Natalie's Story

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.

Sophia is a very busy girl. She has daily therapies to build up her strength so she can sit up, become mobile, use her hands, talk and become more independent. She also meets with many doctors on a regular basis. She handles the visits really well. Sometimes she squeals with excitement when they walk into the room. Sophia always lays back relaxed on the table with both hands behind her head, as if she's lounging on the couch. The check ups don't seem to bother her one bit.

Even though Sophia has experienced a lot of surgeries and pain in her short 2 1/2 years of life, she continues to smile and laugh every single day. Because of her, I strive to live in the moment and celebrate the simple things in life. She has made me a stronger, more compassionate and positive person and I am grateful.

Read more about Sophia here: caringbridge.org/visit/sophiaweaver

eSpecially Parents is a monthly series featuring nine moms with amazing stories to tell. To catchup, read more here. 

Saturday, May 21, 2011

May Edition eSpecially Parents: Paula's Story

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 nape of the neck well, or the cape for that matter. I did accidentally cut his ear lobe once - talk about guilt!  Boy does an earlobe bleed a lot.  In my defense, he moved.
Getting on an airplane is a definite so not happening.  I remember the last time we tried a few years ago, from JFK to Charlotte airport and back. I was flying with him, alone, to go see my husband.  Just getting through the check in and scanners was difficult.  Tons of different sounds, smells and other things to drive someone with sensory issues off the wall. 
Coming back from Charlotte airport, they let women and children board first.  Well, Tye had other plans.  We walked down the tunnel to the airplane while other families boarded, but Tye would not go past the area where the tunnel connected to the plane.  I told them to let the other passengers board. 
Passengers, flight attendants, the pilot... everyone tried to helpTye get on the plane, but no way would he allow it.  He protested like trying to get a cat into water.  At this point the whole flight was already boarded and they needed to leave.  Security came and saw the situation.  He overlooked protocol and let me call my husband on his cell to get his help.  My husband had to pick up my son with his legs and arms flailing around.  Luckily, we were seated in one of the first rows.  Once in and in his seat, Tye did great.  It was the getting on that was a real issue.  He just could not handle the jet fumes, the sounds in the tunnel and who knows what else.  I'm surprised we didn't get a round of applause when we finally got on that plane. 

I am so glad the security guard let my husband who did not have a ticket board the plane otherwise we would not have made that flight. You hear some stories about families who had really bad experiences with flight personnel or passengers on a plane when their disabled child is having issues that are just related to their disability not because of poor parenting or a badly behaved child.  I am glad, so far, I have not had to deal with too many ignorant, clueless or just plain mean people when my son has had issues that he can't control due to his autism. 

We drive when we travel anywhere now.  Makes it so much easier for us.  Tye's a great traveler by car.  We leave soon for a road trip up to NY - about a 10-12 hour drive, one way.  We are traveling with 2 dogs this time.  Let's see how that goes!

Sensory Websites:

eSpecially Parents is a monthly series featuring nine moms with amazing stories to tell. To catchup, read more here.

Friday, May 20, 2011

May Edition eSpecially Parents: Elisa's Story

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, but he had his moment.
And that’s what it’s really about for him. Living in some second that is all his. I love that about him. He finds his own victories on his own terms. And I smile from the deepest part of my heart.

eSpecially Parents is a monthly series featuring nine moms with amazing stories to tell. To catch-up, read more here.

Thursday, May 19, 2011

The Cash Experiment

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 far, no emergencies.

Some of you are rolling your eyes now or have completely tuned out this post - and I agree, this is not the fun part of life - figuring out how to save money, be more responsible with spending and waiting to make purchases. We are a want it now, pay for it later type of society.

And after a month of this, I have asked myself these questions:
  • Is it less convenient? Yes.
  • Will I go back to debit cards? Possibly, but not yet.
  • Am I paying down some bills? Yes.
  • Are the tradeoffs worth it? So far, yes.
  • Is anyone suffering from the changes? I have not seen any yet, nor have I heard complaints.
So if you are wondering where you might be able to cut corners, try this for a month or so. It will raise your level of awarness about your spending habits. And may make you achieve a goal that may seem out of your financial reach. And that could make a little bit of pain worth it.

Wednesday, May 18, 2011

Special Exposure Wednesday: Nona and Ben

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.

Tuesday, May 17, 2011

Imp on the Loose

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 and quietly give Ben a high five.

Monday, May 16, 2011

May Edition eSpecially Parents: Meg's Story

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 somewhat fanatical about pressing buttons all around the house, moving wet laundry from the washing machine to the dryer (nevermind the dry clothes already there), and controlling the aspect ratio on the television. He is a busy boy, to be sure.

In his spare time, my son loves to race around the kitchen on his wheelybug, spinning around and crashing into anything in his way. He is an avid reader too- repeating as much of each story as he can manage while flipping furiously through the pages.

When he is outside in the garden he is, perhaps, most happy. He loves to run, climb, and jump (and throw rocks). He races about pushing his sister's baby buggy or a play lawn mower.

Another favorite activity is reading license plates on cars. He loves letters and numbers and will easily fall into tantrum if he is kept from reading every last one in a busy parking lot- which is not easy to manage and gives me a heart attack each and every time. You see, he has no concept of danger and he's extremely stubborn, a difficult combination at the best of times.

We are still working to understand what triggers his tantrums and rigid thinking, aside from being told 'no', that is. Every day is a mystery.

We don't yet know what might set him off or when. I've come to realize that I live in a constant state of anxiety, planning for the worst and forever hoping for the best.

I make an effort to enjoy every moment of fun we have as a family, storing up strength and patience for the hard times. Thankfully, the more verbal my son becomes, the more we see of his personality and sensitive heart. It is a tough job, but I wouldn't trade my sweet son for the world.

Magic Marker Monday: Thing 2

Another one of Ben's famous art projects done with his hands.

Need some art inspiration for your household?
And if you have a little artist in your home, link up and share with others.

Sunday, May 15, 2011

May Edition eSpecially Parents: Donna's Story

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.  Even if it's only for a sweet tea.  I pretend I'm ordering for him.  He laughs so hard his body bounces.  It's hilarious.
Them comes his favorite part of the day, bath time.  OMG!  When I say favorite, I mean it. As soon as he hears the bath water running he starts squealing and kicking.  Once he's in the tub he makes sure there's more water on the floor than in the tub from kicking and splashing.  It's okay though, I figure it's the only thing he's been able to control all day.  Go Ben!
After his bath and a busy day, he's down for the count.  If he can start off sleeping on his belly, then he's out like a light.  If not, he'll hum a few courses of whatever he's singing then falls asleep.  He sleeps alone.  Always has.  I didn't want to start something I'd had have to undo later. 
Most of my friends are surprised, but if he were typical, I would have done the same thing. I have a monitor in my room and check on him often.  They are more than welcome to sleep with him and get a good nights rest.  Yeah, right.
That's my Ben in all his splendor.  He's awesome and I wouldn't change anything about him.  Need I say he's the love of my life?
Have an awesome week everyone and be blessed many times over.
eSpecially Parents is a monthly series featuring nine moms with amazing stories to tell. To catchup, read more here. 

Saturday, May 14, 2011

May Edition eSpecially Parents: Denise's Story

 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 watch and makes the difficult journey worth it.

So what makes me smile most about Luke? I would definitely say seeing him smile, lopsided or not.

eSpecially Parents is a monthly series featuring nine moms with amazing stories to tell. To catch-up, read more here.

eSpecially Parents: Our Kids

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.

Wednesday, May 11, 2011

World Champion Swimmers

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.

Tuesday, May 10, 2011

Ben at the Special Olympics

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!

Monday, May 9, 2011

Magic Marker Monday: Happy Mother's Day Artwork

These gifts are from Ben.

Need some art inspiration for your household? 
And if you have a little artist in your home, link up and share with others.

Sunday, May 8, 2011

Happy Mother's Day!

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!

Friday, May 6, 2011

This Day and Age

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, boy gets candy, everyone feels good? I am not so sure anymore.

A week ago, I had a conversation with two other moms - one with six grown children and the other with three young boys. For some reason we started talking about how different it is for kids now because of how much more we know about all the ways our children can be unsafe.

There are many changes that have happened over the past 30-40 years in regard to parenting and children - but one that we discussed for quite awhile was how once we reached age 6, we played outside by ourselves. At 8 or 9 years old, our parents did not see us until dinnertime and even then it was for a quick few minutes. Night time play meant hide-n-seek and catching fireflies.

Today, at least with the friends and families I know, roaming the neighborhood playing until called in for dinner is unheard of. We are all the so-called "helicopter" parents, hovering above, guiding our children's discussions, conflicts, activities and made-up games. No one questions or challenges these changes, and we certainly would judge the mom who would let her kid walk the two blocks to school alone. Yes, everything has changed. All I am saying is that it may not necessarily mean progress.

Am I trying to start a campaign to let our kids run free again...no. Do I think our kids are missing anything? Perhaps, but they do not know it. My memories of those summer days will live with me forever, and I believe my sons' memories will be with them forever and be just as important as mine are to me. They will just be different than mine.

So off I go to plan play dates, sign-up for camps and schedule our summer. Maybe I can include a walk in our forest-like backyard, the kids could go it alone, while I stand on the back porch armed with binoculars, mace and cell phone. That certainly is a different image than the ones we produced of our moms from our summer days...

Wednesday, May 4, 2011

Special Exposure Wednesday: No Turtle Soup for You

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.

Tuesday, May 3, 2011

Hoarder or Collector?

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.

If anyone has insight into this behavior or into the psyche of a three year old boy, please comment. In the meantime, I have the exterminator coming so we do not have a bug problem!

And last but not least, Ryan's viewpoint: We should be proud that Sean put the pepperoni in a bowl.

Monday, May 2, 2011

Magic Marker Monday: Pet Rocks

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? 
And if you have a little artist in your home, link up and share with others.

Sunday, May 1, 2011

eSpecially Parents: Elisa's Story

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 leaves swirled in the wind. In the quiet autumn I took my son on long walks in his carriage and imagined it would always be as it was then.

Samson’s first Christmas came with a brief flurry of snow and a jolt of reality. A few days later, I took him to a six-month well visit with the pediatrician. In the exam room a nurse checked vital signs and took some measurements. My joy must have been quite apparent; the nurse reached and touched my hand and gave me a warm smile. When the doctor came in, she seemed concerned about my son’s head circumference that she said was disproportionate to his other measurements. My husband and I are both small people, so I didn’t pay much mind at the time. But the doctor insisted on a cat scan to rule out craniosynostosis, which meant that the soft, membrane-covered space between the bones at the front and the back of a young baby's skull may have closed prematurely and would inhibit normal brain growth. She also looked into our son’s eyes for a long time and seemed even more concerned about their misalignment.

Our doctor scheduled a cat scan for early the next morning. I remember feeling frightened at how insistent she was to schedule the test so soon. Then we waited for what seemed like forever to get her call in the following days. As it turned out, the test did rule out the premature closing of the skull. The relief we felt then became just a short-lived irony. What the scan did reveal was structural abnormality within the brain itself. There is a small bridge-like structure – the corpus callosum - that enables communication between the brain’s two hemispheres. The cat scan indicated an abnormality with the connection in our son’s brain. Immediately we were scheduled for an MRI, which would show a more detailed image of our baby’s brain.

I remember how bitter cold it was walking through the hospital parking lot. The lightness I felt months before was gone, replaced by anxiety and dread at what the first of many tests would reveal. My memories of that day are clouded, intermixed with the loud pounding sounds of the MRI machine. I cannot get the chronology straight in my mind. It was all fog and blur, and soon it would not matter. Within a few days and a visit to a neurologist from the University of Pennsylvania Hospital, our new little family entered a separate world from the idyllic peace we’d established, to a place with a different truth.

The neurologist described calmly that our son’s brain was missing an essential structure responsible for bridging communication between the right and the left hemispheres. Agenesis of the corpus callosum is a neurological disability in which developmental milestones such as sitting up independently, walking, and talking are delayed. Children with agenesis of the corpus callosum fall behind their peers quite early in childhood without the typical skills of abstract reasoning, problem solving, and social development.

Without the ability to effectively communicate, children with the anomaly often remain in worlds without peers and the fulfillment of friendship.

What I’m left with now is a strength that comes from a promise I made with God. I have a pretty daunting mission. Yet, I am reminded daily that “to whom much is given, much is expected.” So many days I grow weary of this role and even question why God would choose me for this assignment. Then there are just as many days of the brightest light when a kind woman behind me in line at the market will smile at my son, grab my hand, and remind me that I am blessed to have such a child. There have been kind people like that woman who seem to enter my life just in time to catch me before I fall too deep into self-pity.

Samson is thirteen now. He’s a strong and healthy child with a funny and quirky personality. I know he struggles daily with his communication and expressing his needs and his desires. I have become his primary playmate, and I’ve watched younger children grow up around him and eventually develop out of his ability to comprehend.

Outside of our inner world, we are constantly reminded that Samson is different. When he was very small and not yet able to walk, he’d power down the slide into my protecting arms, as others moved to the other side of the playground safe from the possibility of a social encounter. We’ve learned to live in the everyday reality that some people will never know him, never gaze into his eyes, never hear how ordinary words sound like music when he speaks them.

Afternoons in Springtime, through open windows I hear the shrill voices of children in the street. None of them will come to knock on our door. But it’s the social gatherings with friends and family that are the most difficult. Sometimes, in summer, after it gets dark, the other children run through the backyards to catch fireflies. Samson just watches through the screen door. He cannot keep pace with them. Sometimes I can pretend it doesn’t matter. But I know he’d rather be running through backyards clutching an empty jar with holes punched in the lid. I know he’d rather smell the same air, catch the same fireflies that he only sees from the porch door, through lonely eyes.

Read more about the eSpecially Parents Series here.