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Showing posts from April, 2011

eSpecially Parents: Michele's Story

My name is Michele. I live on Long Island in New York with my husband, Rich, 10 year old daughter, Taylor, and 2 year old son, Ethan. I have known Vanessa for nearly 30 years, since middle school. So I have some really good dirt on her. Like when she used to wear skin tight jeans with white “pumps” to school. Well…It was the 80’s! Oh, this is supposed to be about me…Sorry. Anyway, when Vanessa asked me do write this I was honored. She is an inspiration to me, and she is one of the most courageous, most selfless persons I know. I also thought, “Why is she asking me? Ethan doesn’t really have special needs.” I guess even though I am constantly hounding my husband for being in denial, I have a little of my own at times. When Taylor was a baby, I left a terrible and abusive marriage with her father. I went back to college to pursue a career as a Special Education Teacher. Little did I know how helpful my career as a Special Ed Teacher would become. I was a single mother, full-time st

eSpecially Parents: Elizabeth's Story

My name is Elizabeth and I teach preschool special education in Charlotte. I “fell” into the field 14 years ago while working on my Master’s degree and teaching at a church preschool. Several years ago, I had the opportunity to leave the classroom to support preschool teachers in inclusion settings. I loved the chance to meet other teachers and share ideas, but could not stand to be out of the classroom. The next year, I was back in the classroom – and this little red head kid stopped by to visit with his mom. I was HOOKED! My husband, Brad, and I have 2 children – Ryan (13) and Kathryn (10). Ryan has Down syndrome and goes to middle school in a separate setting class. He likes trains, Disney movies and going to visit Grandmommy and Granddaddy at the Chicken Farm. Kathryn is in 5 th grade and loves drama. She just finished her final performance with the school choir and anyone who knows her already has her autograph. I love to read eSpecially Ben. Vanessa has a w

Taken for Granted

I know my title probably has some of you ready to hear me rant and rave about how I need to be appreciated for all the work I do...well at least not today. (Ryan breathes a sigh of relief.) This post is about reading - just plain old reading words, like you are doing now. Logan has started reading over the past couple of months. I am overjoyed by it, so proud of him I want him to show everyone his new skill. I am writing about this because I do not hear people talk about their child learning to read. Am I missing something? Is my appreciation so much more because of Ben's situation? Do people just not talk about it because it is considered bragging? I wish someone would help me out here. Learning to read was not on my radar as something to be excited about. Of course, everyone asks about rolling over, sitting up, first steps and first words. But never did anyone warn me that hearing my child read an entire book would make me burst with pride. Logan reads signs when we are

Special Exposure Wednesday: Noodles Aren't Just for Dinner Anymore

Join in the fun at Special Exposure Wednesday , Wordless Wednesday or Seven Clown Circus .

Gearing Up for Summer

With summer approaching, most families change their schedules to include vacations and downtime. It is a celebrated time, one that most parents reminisce about their own childhood summers filled with beaches, pools, late nights watching the stars, camping and roasting marshmallows. As parents we try to reinvent this for our own children because we enjoyed it all so much. But it can be tiring! As I have said last year in Surviving Summer , this is probably the most difficult season for parents with children with special needs. Typically children with special needs thrive on a constant schedule filled with short bursts of activities that change at regular intervals - like a classroom setting or a well-run camp. Parents and families trying to imitate this is near impossible without their own housekeeper and camp counselor staff. I had a taste of summer this past week. It was spring break for us and all three boys were home with me. We had late mornings and then an activity and doctor&

Magic Marker Monday: Personalized Onesies

Ryan's cousin, Shelley, lives near us and she is expecting her first baby boy in May. She also happens to be a clever and creative person and when it came to her baby shower, she took over planning the fun activities. I think the reason was she did not want us guessing her circumference and making her husband try baby food. One of the activities for kids and adults was to decorate onesies. She provided white onesies in several different sizes and special craft paints and markers from Michael's. Everyone had a great time doing it. Now little Frankie will have his own personal line of fashion. You may also check out some of Shelley's other creations at Olive O. Home . 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.

eSpecially Parents: Paula's Story

Well, let's see, my life in a nutshell...I always dreamed of having a family with lots and lots of kids.  I wanted about 4 since I'm one of four and that number seemed a  good number to grow up in. Well, unfortunately life did not turn out that way. After being married for 5 years and trying to conceive for many of them, we found out we couldn't conceive without the help of science.  Thousands of dollars later and a few unsuccessful attempts, we got lucky and were pregnant with twins through in vitro fertilization.  One boy, one girl.  We were over the moon in happiness.  Seven months into the pregnancy I had premature labor contractions and found out I lost one of the babies.  It was a hard, sad time. I had to be on bed rest for the remainder of the pregnancy.  At eight months, my beautiful son, Tye decided he wanted to be born early.  He was just a little guy, 5 lbs, 8 oz. but otherwise perfect and healthy. Tye was perfect in every way.  We were so happy,

eSpecially Parents: Natalie's Story

Hi, my name is Natalie Weaver. Before I became a mom I worked as a sales and marketing manager. In my free time I enjoyed painting. I used to display my artwork for years at a gallery in a local arts district. At some point I would like to paint again. At a very young age I knew that I wanted to be a mom and somehow knew it would be the most important role in my life. Taking care of my family is what I'm truly passionate about. I feel lucky to be able to spend my days at home with my children, Sophia is 2 1/2 and Alex is 9 months old. I couldn't do this without my loving and supportive husband Mark. He is an amazing person. His strength and wonderful sense of humor has helped us get through the most heartbreaking times with our daughter. Sophia was born with a rare craniofacial condition. So rare that none of her many specialists have seen anyone else like her. She has differences to her face, hands and feet. She is undiagnosed and one of a kind. Sophia's had 6 surgeri

eSpecially Parents: Karen's Story

My name is Karen. Vanessa and I were freshman college roommates.  Although we do not see each other as often as we would like, we are able to catch up with phone calls.  It was in fact when Vanessa called to tell me that she was pregnant with Ben, that I shared with her that I was also pregnant with my first child.   We discovered our due dates were about one month apart; oddly enough this occurred two more times.   I am a married stay at home mom of Matthew (5) and Jacob(7).  I also had a third baby (Michael) that died at 8 days old after emergency heart surgery complications.  I include Michael in all of this because I think the loss of him, has influenced our decision making process. Jacob and Matthew have a brain disorder called Lissencephaly Pachygyria ( Smooth Brain ).  Basically instead of having all the lumps and bumps that the brain normally has their brains are relatively smooth.  We have had all types of genetic tests done, but they have been unable to diagnosis

You Should See the Other Guy

On Palm Sunday, we arrived at church at our usual time to participate in Sunday School. I took Ben's walker out from the trunk. Ryan and I strapped Ben in with chest harness and seat. Ben made his way toward the door as his brothers ran around the garden amused by the bird bath with the stone bunny inside. I opened the door to the church for Ben. Without warning, Ben's walker folded onto itself, slamming Ben's face to the floor. Ben's nose took the brunt of the fall. He bled and cried. Then I cried. Our church community got ice, gave hugs and helped any way they could. Ben only wanted his Dad to hold him. Of course, things like this happen so quickly and when they do, the details are all in a haze. I do remember wondering, what just happened? How could the walker do that? And probably even quicker than the fall, the answer came to me: I did not engage the lock for the walker properly. Some people have told me not to feel bad or guilty, but I did. Ben's nose bl

Special Exposure Wednesday: Tree Hugger

In honor of Earth Day - April 22, 2011

An Uncelebrated Anniversary

I knew the call was coming, but did not expect it to be an anniversary moment. On the drive to Charleston with my mom and sister for what is known as our Annual Girls’ Weekend, this being our second, I got a call from Ben’s neurologist. Last year, while on the 1st Girls’ Weekend (cannot say annual when it is the first, a little pet-peeve of mine from my event planning days) I was first informed of Ben’s seizures. So this call was ill-timed, yet should have been expected, because life is like this – when you are trying to get away from it all, it catches up with you and lays it all in your lap. But I was much more experienced this time. I took the information in stride and made the follow-up appointment for Ben for the next week. With an action plan set up, I was able to file it away for the long weekend. Lucky for us, the neurologist was able to see us immediately because her trip to Japan was canceled due to the earthquake and tsunami – once again one of life’s ironic moments. It al

Magic Marker Monday: Hands Down to the Bunny!

By painting the pointer and pinky fingers and palm of the hand, this bunny comes alive. Add googly eyes and a nose made from pipe cleaners and felt and you have a cute card to give out to grandparents and friends. 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.

eSpecially Parents: Donna's Story

Hello everyone.  I'm new at this blogging thing so bare with me. My name is Donna and my son's name is Ben.  I met Vanessa and her sweet Momma when our Ben's were classmates years ago.  Vanessa was the only parent (other than me) who would stay in the classroom to check things out. I would try to just drop him off and leave, but ended up going back inside.  Maybe it was because Ben stayed sooo sick and I worried about him catching something else. Ben is an only child and was born with Tetralogy of Fallot (a defective heart).  He had 3 chambers instead of 4. I found out about his heart at 4 months pregnant.  During my last doctor's  visit, something went terribly wrong and I had an emergency c-section that night.  Ben was born with underdeveloped lungs and had to stay in the NICU for 2 months.  (Somewhere along 7 months I lost fluid and it went undetected). At 3 months old I took him back to the hospital for his heart surgery.  It was a success, but whil

eSpecially Parents: Meg's Story

Hi!  My name is Meg.  I'm an American expat living in England with my husband and four year old twin son and daughter.  I have lived in the UK for the past 8 years and have only worked as an office temp in that time (long story), but before I moved to England I worked in Residence Life/Student Affairs.  My last post was Assistant Dean of Students and Director of Residence Life at a private American University in Switzerland.  Now I work 24/7 as a mom/wife/cook/cleaner/playdate co-ordinator/party planner, etc. When my children turned two, our doctor's office sent us a list of milestones/skills/behaviours that my kids should have accomplished by that age. I read through the list: putting two to three word sentences together, potty trained or showing an interest in potty training, make believe play, etc. and I started to cry.  My husband looked over my shoulder and, attempting to comfort me, said 'Pixie* is doing all of those things'.  I managed a tearf

eSpecially Parents: Denise's Story

My name is Denise and I live in Texas with my husband, Matt, and our three children: Jason (5 years old), Luke (almost 3 years old), and Madelyn (5 months old). Matt is Vanessa’s cousin from New York. I have been following Ben’s blog every day for about a year now. Having a special needs child of my own, this blog gives me inspiration. I enjoy cheering Ben and his family on during the rough patches and hearing about his latest accomplishments. This is why I am happy to tell the story of my son Luke and his life with CHARGE syndrome. Luke was born six weeks early after a normal pregnancy which was not unusual since my first son was also preterm. He had to spend some time in the NICU, but appeared to be otherwise healthy and beautiful. During his stay in the hospital, several things were pointed out to us that led us to believe that something was wrong. First it was his ears: low set and smaller in appearance. I didn’t think that was anything to worry about at first. Some people have

eSpecially Parents

Parents of special needs children often get lumped together for a variety of reasons. On the surface we seemingly have the same needs, concerns and experiences. In many ways, we do face similar issues and experiences; however, the way in which we handle the emotional, mental and physical demands may be different. A challenging situation for one parent may not be for someone else, and a support system for one family may be a strain on another. I was reminded of this when I met a friend for breakfast a few weeks ago. Her son has the same ACC diagnosis as Ben. We do have a lot in common and an instant friendship was formed when a camp director introduced us because of our ACC connection (what a pun!) That morning, she shared how every night since her son was born (he is 14 years old), she checks on him 5-6 times a night to make sure he is okay. It is the only time she feels he is safe. Then she asked me, "Don't you do that too?" After a brief pause, I sham

Special Exposure Wednesday: Going Down

Ben is usually reluctant to go up and down stairs. Here, Ben's PT works on building these skills. If Ben was more cooperative, it is possible he could ride the bus without the wheelchair. Join in the fun at Special Exposure Wednesday , Wordless Wednesday or Seven Clown Circus .

Welcome to Holland

Many of you know this poem and some may even say it saved your life at the time someone gave it to you to read. Others who do not know it, get ready to read something that will open your mind to a new way of thinking. WELCOME TO HOLLAND by Emily Perl Kingsley c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and s

Magic Marker Monday: Multimedia Art

Ben is getting a twin size bed soon and with this improvement,  his room will get an upgrade featuring these works framed. 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.

Junior's Story

Another benefit of the race was that I met other bloggers whose children face similar issues to Ben. One that really impressed me was a story about Junior. His photos alone make you want to meet him. Junior looks like a really cool kid with a great attitude. And it is obvious that his mom does a lot to make his world as wide as it can be. Check these out when you get a moment: Junior's Amazing Journey Junior's Voice Adaptions 4 Kidz

Special Exposure Wednesday: Spinning out of control

Join in the fun at Special Exposure Wednesday , Wordless Wednesday or Seven Clown Circus .

Tying Up Loose Ends

Last summer when we used the Landeez Chair with Ben at the beach, we needed to purchase a small belt to keep him in place. We bought it at a small hardware store for $3 - fastener and all. A few weeks ago when I took Ben for a haircut , I remembered the belt was still in the trunk. If you have seen the photos of Ben getting a haircut, you know he can hang upside down, turning a regular visit to Supercuts into an Olympic event for me. Ben would leave with a new haircut and I'd have sore muscles and a bad back, and possibly a few scissor stabbings. This time, we used the belt around his waist and it was just enough restraint to keep Ben in line. He realized about 1/3 of the way into it that he was not going to get out of the situation so he sat back and watched Bob the Builder on the small DVD I brought. Not that I am counting, but one point for me.

Magic Marker Monday: Got the whole world...

Logan is a student at a public Montessori school. He has been coming home with these home-made world maps about once a week. He uses a special punch tool to get the continents just right. We recently saw a picture of Africa, and Logan immediately knew what continent it was. 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.

By the time you read this...

My sister, Olivia, my friend Wendi and I hopefully have completed the Cooper River Bridge Run in Charleston, SC by the time you wake up and read this. In its 34th year, this world famous foot-race is my first 10K of the year meeting the criteria for the 10K & 10LBS Goal I set for myself this year. Check out what Nine Charities receive funding from the race proceeds. More next week on how we survived - Because we will GET OVER IT!