eSpecially Ben

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

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

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

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 .

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

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.

Another benefit of the About.com 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