eSpecially Ben

Ben was accepted by the Ace & TJ's Grin Kids program this year to visit Disney World. Ben has graciously asked the rest of his family to chaperon him. Woohoo! We are going to see Mickey! If you just started reading eSpecially Ben, please go back and read about our history with Ace & TJ. July 2010 Ocotber 2010 March 2011 We will keep you updated on our Disney plans. So far the kids have watched the Disney Vacation DVD no less that 15 times. To say they are excited would be an understatement. Ryan has plans to have us at the gates at 7am each morning with itinerary ready (I am not making this up). For Ben, he is not going to know what hit him! Check out the Grin Kids Website - your family may qualify to participate in the program. And if you just want to support the organization, Grin Kids fund raises throughout the year for this program. If you are interested in seeing how you can donate or volunteer , there are resources here .

Hmmm...If I knew such a controversial topic would get me so many comments on Facebook, here and private email, I would have made up some others before this. Most of the feedback I received was that I should have told the camp director right when it happened. And looking back now, perhaps I should have. With the circumstances the way they were, I really think my best option would have been to ask the speech therapist to come forward with the story. He had all the information - when, where and who. And he would have done it. And it could be argued that, really, he should have done that immediately without even telling us first. Thank you all for your comments, ideas, thoughts and suggestions. Everyone was supportive and worried for Ben. I know I learned from the experience and would approach it differently if something similar were to happen again. Although I hope your family does not have to broach a subject such as this, but if so, you will be better prepared to act because you rea...

A few weeks ago I wrote about our family's dependence on Ben's Convaid Stroller and how my realization of this addiction made me change a few things in our lives. For one, Ben takes his second dose of seizure meds earlier in the day. I believe that the meds contribute to Ben's wildness and sleeplessness. This change seems to have worked. We have not seen many 1am and 3am's lately! Next, I called Ben's new school to see how we can get Ben on the bus without going in the stroller. I want Ben to walk up the stairs, with assistance, and then once off the bus at school, go directly into his walker.  There are many "steps" that need to happen for this to actually happen, i.e. Ben has to get tested by a school physical therapist to see if he meets their guidelines. I am hopeful that even if he is not approved by the start of school, I will at least insist that he is met with the walker at school. I want the new school's staff to visualize Ben as a wa...

During camp this summer, an older female counselor made a favorable comment about Ben's genitals to his speech therapist. The speech therapist did not know this women and definitely felt uncomfortable with her making that kind of comment to him. When I got wind of it, I knew it was a strange and weird comment to make about a child, especially to someone unknown to you. I knew it was unprofessional and that the she would probably lose her job over the stupid comment. So I made the decision to not say anything until camp was over. I weighed the positive and negative impact of this woman losing her job to Ben's experience at camp - less staff available, lower staff moral, etc. One of my fears for Ben is to have him molested and he not have a way to tell us. I did not think that this woman was abusing Ben, I just think she said something in passing that she may have thought funny to share with someone else. I do think that when working with any childre...

Let's see...Tye was diagnosed with autism 13 years ago.  Over the course of that time there have been varied responses to his diagnosis from family members and friends. My family, for the most part, has been really good with my son, taking some effort to try to make things easier. There are times when some can be totally clueless too. My Mom is awesome and seems to get most of it (or at least tries). My father has been a true disappointment.  He doesn't know how to interact with Tye and his half-hearted attempts are awful to watch.   On my husband's side most of the older kids ignore him, which hurts, or look at him funny when he makes the sounds he makes or does some of the things he does.  The younger ones notice he's different, but haven't quite figured it out yet.  His parents are not too bad with him, although they will allow him to do some things he shouldn't do because they feel bad for him and aren't sure how to reprimand him when he's doing ...

Change in family and friends is a topic near and dear to my heart. I've always had a supportive immediate family.  I have an older sister and brother, and my parents just celebrated their 50th wedding anniversary.  After having Ben we seem to be more of a pack now (more protective of one another).  If something is going on with my nieces, it's common for all of us to show up where they are, unannounced.  It's refreshing because if one of us doesn't have the energy to deal with the situation, the others will.  That's the ultimate support to me.  It simply means that we are always aware of the issues because of continuous communication. Some of my family members have surprised me because I never thought they would want to have anything to do with Ben, but have ended up being the "motivated helpers" as I call them.  When I pull up, they are at the car to help.  Concerning friends, they are few and far between.  If I can't talk to them on...

Loving an Only Child Choosing to love an only child is the most difficult choice I have ever made. Years ago, I imagined myself as the mother of four boys. I have always thought of myself as a “boy mom,” the only girl in a wild house filled with male voices. We were on our way to building that “house” when Samson came. Then, his unique challenges began to fill our thoughts and alter our direction. One day we were 40 and I had let go of my original plan. Genetics forced us to consider the certainty of other biological children having the same neurological challenges as Samson. The foster system was my original idea – open our hearts to other children and wait until God chose the one we could keep. The possibilities of it all seemed dreamy to me at first. Reality arrived soon, however, when we learned that single children were often adopted by family, and that most opportunities to foster would likely be to siblings. Combined with Samson’s needs, adopting siblings seemed much more th...

Here are some photos from Ben's summer camp. This camp is coordinated through the Therapeutic Recreation Division of the County Parks and Recreation Department. They offer scholarships to attend this camp. Ryan and I participated in the Amazing Race , one of their fundraising events for the scholarship fund for which many of you contributed. You can see through these photos that the camp does an excellent job of getting the children involved in all types of activities from pet therapy to swimming, and everything in between. . And when they were not busy with the weekly visits from the music therapist, horticulturalist and My Gym, they went off-site to the bowling alley, theme parks, local colleges to take in a play. Ben was busy exploring this summer and making friends.

I received this letter a few weeks after Ben attended Rainbow Express at Matthews United Methodist Church: First off, thank you so much for sharing your wonderful son with me this week. Ben really fascinated me as I learned more about him each day. I loved seeing his smile and laugh when he got excited, and although it was a wee bit painful, I laughed so hard every time I turned around and saw him innocently gnawing on my hair! Everywhere we walked in the hallways, someone stopped us wanting to meet Ben. It might have been because of his awesome trike or adorable red hair, but once people looked him in the eyes they fell in love with him and couldn't help but tell me how cute he is. I was surprised how well Ben was able to communicate his desires with me. I feel as though I've learned so much, not only about Ben, but about myself. Having Ben as my camper was a massive blessing. Give Ben a hug for me! Jaclyn Reading this letter made my day!

If you don't like something, change it. If you can't change it, change your attitude. --Maya Angelou Who says it better than Maya Angelou?  I mean reallly, geesh, she is awesome. This post is about change.  It's funny, because I have always been a huge fan of change.  You know, mixing things up, trying something new, meeting new people, travelling to new places, etc.  All these things, every single one of them is like a living nightmare for my Autistic son.  So nowadays change is something we plan, not something that happens to us.  Changes in relationships are unpredictable and therefore a dangerous area for our family.  Since we live so far from my family, their support is by necessity, verbal (phone calls), so from a practical point of view it has made little difference.  As for friends, we have recently moved to a new area of the country and are in the initial stages of friendship with lots of lovely people who know all about our challenges, w...

One of the eSpecially Parents suggested this topic for the month of August: How have your relationships changed with family and friends after your child was diagnosed with a special need? I have known about this question for awhile and had lots of time to mull it over. I have met my wonderful, caring and true friends through Ben. He seems to attract genuine people. And luckily they seem to like the rest of his family too. Early on when Ben was little, we were one of the first families to have children in the neighborhood. After Logan was born, there were a few more people having children and we decided to form a group called Club Family . We swapped babysitting time and planned group activities for the kids and parents. This group became my social outlet - and Ben was always a part of it all. I can only think of one time when a parent made a misinformed choice of words to explain Ben's condition, but other than that, everyone has been warm and loving toward our family...

I will be posting again soon...summer is almost over and it is our craziest time. Thanks for being a loyal reader!

A few weeks ago, Ben was brought home from camp without his Convaid stroller. I panicked. I kept myself together for the sake of the community worker, but I was beside myself. I mean I really came close to an anxiety attack. I called Ryan to tell him of the dilemma and he too had angry words about the situation. Our biggest fear was that Ben would not go to sleep at night and we would have nowhere to secure him. His sleep schedule has been crazy - up until after midnight wanting to roam the house, getting into things he need not get into. Our sleep and Ben's safety were our two main concerns. I realized, fairly quickly, that my anxiety was something to examine. I saw that we had become dependent on strapping Ben into his chair when he would not go to sleep. Perhaps this "no-chair" night would help us develop new strategies for bedtime. We made it through that night, and we have since consulted with the neurologist. Time release melatonin for Ben is working some ...

Ben's 8th birthday was celebrated with his cousins, friends and grandparents at his favorite hangout - Smelly Cat , our local coffeehouse. The kids were able to make cats or kitten puppets with various art supplies and paperbags. Ben got to eat his cupcakes and drink lots of chocolate milk - everyone was happy and content...for awhile! Magic Marker Monday is part of 5 Minutes for Special Needs . Drop by on Mondays to see what crafty things kids are creating.