eSpecially Ben

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...

Early in my career as Ben’s mom, there were some situations where I was adversarial in my responses and reactions to circumstances where I thought Ben’s needs were not being met. With guns loaded, ready to fire, I would take out anyone who I thought might not be giving Ben the best possible care. Instead of making the situation more positive, I may have alienated the people who could really help me. I realize now that almost everyone wants to provide the best they can for Ben or any other child that has a special need. Like with anything that is sensitive and very personal, misunderstandings happen easily and can add to an already emotionally charged issue. The parents have emotions about what they expect for their child and others have emotions about the unknown. Fear, uncertainty, worry are all floating just beneath the conversations you may have when you are asking for assistance for your child. Being an advocate means partnering with others, building relationships and being aw...

Ryan and I spent two nights away a few weekends ago – without the boys. We had not done that in two years, and even then, I was 7 months pregnant, so technically we were not alone. We were giddy like school girls (to steal a saying from Ryan), so giddy that we got lost on interstate 77 for at least an hour (that’s what we are willing to admit.) We were headed for Ohio and almost made it to SC. In our defense, we were talking and laughing and relishing in the fact that no one was seated behind us in the minivan. One thing that we discussed was how calm and at ease we were with each other, so calm we never paid attention to which direction we needed to go when we left the gas station. We were together for nine years before we ever had children – so we had a lot of time alone, and I know we never stopped to appreciate it. Nor could we have. When I see couples who are about to have a baby, I want to say, “Go out, spend time alone with each other. It will be years before you will have...