These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with Rett Syndrome, a rare genetic mutation. My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.
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This year 11 children built graham cracker houses at our annual party. Recipe and directions below. Everyone brings for each house being built: Approx a 12” x 12” cardboard or baking pan covered tightly in tin foil. This will serve as the platform for the house. If you use a baking pan, make sure it is not one you will need soon. A cardboard foundation for the house such as individual juice boxes (taped together), box from snacks, cut off the bottom of a ½ gallon OJ or milk carton. This will determine the size of your house. I recommend small. One box (or more for larger house) of honey graham crackers – any brand. Tape the foundation firmly to the cardboard. Sample Supply List Mini marshmallows Tootsie Rolls Green leaf candy Gum drops, assorted color Red & White Peppermint candies Mini candy canes M&M’s Twizzlers Skittles Chewing gum – Big Red – seve...
It has been a hectic couple of weeks with family visiting and strep throat invading our home (try switching that around - strep throat visiting and family invading), all the while enjoying our usual festivities and holiday traditions. Through all the chaos and craziness, the boys found time to relax. Ben treated his brothers to a milkshake at his favorite hangout, Smelly Cat. Sending you good thoughts and wishing you all a wonderful holiday time with family and friends.
Last April, I wrote about the process we were going through to get an accessible bathroom for Ben. Since even before I wrote that post, I had been working earnestly on lining up bids from contractors, putting together a layout and design and meeting with people who could help in the process. I invested a lot of time and energy to this project, but even more than that was the emotional investment I put into having this bathroom for Ben. Two contractors dropped out for various reasons, another was so over priced that we could not consider them, and one will not return my calls. Just last week, my one Hail Mary, the guy who showed up wearing a big cross around his neck, promising me the world; his bid was as high as the over-priced guy. Deflated, depressed and dejected, I missed a night of sleep, moped around for at least a day and then read a book I purchased the week before called, " That Season of Hope ." If you need perspective, a good cry and inspiration, it is a good ...
A couple of weeks ago, I awoke at 6am. I heard a noise outside our bedroom window. A raccoon had been diving into our garbage on a regular basis and although I was not happy about it, I liked watching him crawl into a four foot tall can, eat and then crawl back out. Half awake, I walked into our closet to get to a window that overlooks the driveway, garbage cans and back yard. Our minivan was parked under that window. As I looked down to watch the raccoon, I saw something in our car, but in my sleepy state, I chalked it up to my hair going in front of my eyes. Then, I turned on the closet light, looked out the window, and saw a cat staring directly at me from inside our car. Ryan was sound asleep. Waking the husband up at early hours is reserved for other emergencies, and I did not want to cash in that card on this. It was up to me to get this stray cat out of the car. After muttering a few choice words under my breath, I put on shoes and headed outside. I opened one door to the ...
While in Atlanta over the Thanksgiving weekend, we visited with Santa. The elf who offered to take our photo with my camera, unknowingly took a video instead of a photo. After watching the video, it struck me as symbolic of our lives: we may start out on track, get off the beaten path and then eventually straighten back out, sometimes without even getting bitten . Happy Holidays to All!
After 45 minutes of a work session, Ben's new and highly competent speech therapist, Jayne, gave Ben his first opportunity to use the key board on her iPad. This is what he typed: TVEE WATTCE I am, ironically, speechless.
Love INC's mission Last night, we had the wonderful opportunity to attend Love INC 's Celebration Dinner. Love INC coordinated the building of Ben's ramp this summer. Unbeknownst to the lead carpenter for the project, Steve; he was receiving a special volunteer award at the banquet. We were invited to sit with Steve and his family and also introduce Ben to the guests before they sprung the award on Steve. Steve with his wife, Ann and mom, June. In the end, Steve was surprised, but with Ramp It Up! staff coordinator Keri, Steve's wife and even his own mother in on it, he had no chance. When he sat down, they quickly hid the event program from him which had his name listed as an award recipient. After Steve received the award and sat down, I think his first words were, "I am going to get you back." Of course Steve was joking, but he is not the type of person to want his efforts flaunted in front of 300 people. He does what he d...
Last weekend we found out about a local wheelchair basketball tournament in an interesting way. My mom and I were having dinner out, and we noticed a table of people who were mostly in wheelchairs. We were leaving at the same time as this group and because I was curious (and nosy), I asked one of the people if they were part of a team. Lo and behold, they were the Atlanta Wolfpack Wheelchair Basketball Team and were here for a tournament. The group was open to answering my questions about when and where they were playing. They whipped out the schedule and said there were games the next day. We knew the kids would love going so we made it to a couple of games the next day. We saw the Carolina Tarwheels beat the Atlanta Wolfpack, and then Atlanta played the Fayetteville Flyers . We missed our home team, Charlotte Rollin' Bobcats play. One of the Tarwheels players thanked us for coming and explained the rules of the game. We learned that there is a classification ...
Ben carefully rolled the red ball down the ramp without looking - a challenge he added to the event himself. His eyes were on the volunteer with the hot pink socks, thinking, "Where can I get me some of those?" Then, his attention turned to the ramp and looked for where the ball might end up after his big push. Or he noticed the two cute teenage girls hanging onto his every move. Actually here is the real story: Ben participated in the Bocce Ball event only after waiting 2 hours and Grandma having to ask why her grandson did not get to have a chance. Supposedly they had called his name and none of us heard it. Ben did not have a medal ceremony which will be a difficult conversation with the brothers. In their eyes, Ben's worth is tied to those medals. They have been holding out for a Gold far too long, in their opinion. Ben was actually excluded in more ways than not getting his name called today. Because he is in a wheelchair, he was signed up for ...
My mom came with me to Ben's next neuropsychology appointment. We spent a few minutes with the doctor while Ben went off with the two young women proctors and his OT. They also had the NOVA Chat. I was worried about how Ben would do - he had been up since 3am because of the crazy cab driver and drunken bicycle brawl the night before and performing on command is not usually one of Ben's finer moments. Ben's OT found us in the waiting room about 20 minutes into their session. She needed water for Ben because he had requested some. She said he was doing remarkably well, although they had to ask one of the proctors to leave because Ben's flirting was getting in the way of the testing. Ben lasted another 20 minutes, for a total of 40 minutes. The OT reported that he shocked the proctors who the week prior could not get anything out of him. Ben was able to tell them what words like bovine, marsupial, and oil can (thanks Bob the Builder) all meant. The doctor calle...
It will be almost a year since we started using the NOVA Chat with Ben. It has opened up our minds to what Ben is capable of learning and doing. Ben's neurologist has been intrigued by the device and Ben's use of it. In our spring appointment with her, she suggested we take Ben to a neuropsychologist for testing. I did not follow-up with this suggestion until a few weeks ago and lucky for us, they fit Ben in immediately. I knew I was dealing with a different type of doctor when I received an email from her asking if we could talk on the phone about Ben. I was not available to talk because I was working crazy hours at a five day conference in California, so I referred her to eSpecially Ben . I think she read it that night because she got back to me and changed her strategy: 1. We need to use the NOVA Chat for testing 2. We need to get Ben's OT involved 3. We need to do the testing in 30-60 minute increments, rather than the usual 3 hours At our first meeting, she ...
After analyzing several more pints of Ben's blood and little bit of mine, there are still no conclusive results to what genetic disorder Ben may have. Both Ben and I have an odd addition to our X chromosome, but since I also have it and show no delays and disabilities, then it may not be the cause of Ben's own delays and disabilities. However, Ben's neurologist, not geneticist, shared that sometimes a combination of chromosomal issues and other genetic abnormalities can be the cause of a disorder. During the summer, the geneticist ran a series of the newest genetic tests, ones recently developed in the past 5-6 years. I have not heard anything and assume there were no findings. I did get a $4700 bill that they assured me the practice would cover. I still stand by my diagnosis - Ben has his own special disorder, unique to him, one they will not find through tests or charts. And the disorder is characterized by sweetness, stubbornness and the ability to stump doctors an...
At 3:00 in the morning last Thursday night, Logan ran into our room to tell us that teenagers were yelling outside our house. As soon as I woke up, I heard the yelling too. I quickly ran to the hallway and peeked out. I saw one man, certainly not a teenager, on our front walkway and a cab parked at the end of the walkway. The yelling and screaming was loud and frightening. I should mention here that our house sits about 10-15 feet away from the street. If you are on our walkway, you are very close to our front door, which is mostly glass. Sound penetrates it easily. Ryan woke up and we filled him in as I searched for a phone to call the police. The yelling got louder and someone started screaming for help. I was on hold waiting for a 911 operator. I tried another phone to see if my phone was broken - I had never heard of waiting for an operator. The other phone had the same results. After what seemed like 10 minutes, I was able to ask for police. The 911 operator said the fight had...
If you have been holding your breath - here is the update on Disney's new policy for guests with special needs: Disney Update (This is also another mom's blog - definitely a good read!) Did we really think that Disney would let us down?
My friend Rebecca sent this link to me: Young Boy Reaches Out It is a great story about a sibling helping his brother who has special needs run a race. The Letter
Many heated arguments, comments and posts began when Disney announced that they wer changing their policy for guests with special needs. Once again a rule must be made because a few fools abused the system and ruined it for the people who truly need the service. My hope is that Disney responds to the uproar by designing a program that deters people from committing fraud and requires medical documentation for those who actually need the service. Here is one blog post from another mom - I like her spunk, but I also like her bigger picture view of this situation: Why We Aren't Entitled CNN has an article on line: Disney Disabilty Policy Changes
My usual roost for writing. Four years ago, I started this blog. I don't remember all the details now, but I do know I wrote a " note " on Facebook about toileting in August 2009 and then had a conversation with a neighbor about writing and blogging. With a lot of trepidation and a little bit of courage, I decided to try it . The title, eSpecially Ben, came to me that very evening. Thank you to eSpeciallyBen loyal readers and followers. I love your comments, emails and likes - they keep me going. The support is phenomenal, the connections are uplifting and the writing is cathartic. I know I am learning something in the process and hoping I pass on hard-earned knowledge to other families. So pick up your virtual glass of your favorite beverage and clink it to the screen...Cheers! My inspiration.
The training session went well. About 8-10 people attended including the head speech person from the school district and a representative from the assistive technology department. Ben's teacher, the Exceptional Children facilitator, the school OT, PT and SLP were there, along with the principal and dean. Ben's private OT, Sarah, attended as well. Sarah was extremely helpful to the discussion because she added technical information about positioning and general therapy information. She was able to talk about using the NOVA Chat from a therapist's point of view. It was invaluable having her there. It also prevented anyone from thinking, "This mother is crazy, thinking her son can do all these things." The session began with a general discussion about why it is important to use the device, At the end, the group watched the video, which was a perfect way to end the session (the video also disproved "the mother is crazy" theory. Thank you Ben.) I was ...
This year Ben has a new teacher and staff working with him at school, and they are not familiar with the NOVA Chat. Last year was a learning year for us: we took our time getting used to the device at home and at school. In an email to the principal this summer, I told her that I was raising the bar in terms of communication for Ben and using the NOVA Chat. She told me to go for it. Luckily, she has been supportive of my initiatives since she took over her position last year. Tomorrow, I am training the teachers, assistants and therapists who work with Ben. I also requested that the district's head speech person and a representative from augmentative communication department attend. I am hoping they will have ideas on how else the NOVA Chat may be used in the classroom throughout the day. I also want them there for accountability - I want this training to lead to consistent use within the school. Our plan is to go over a short handout that explains why using the NOVA Chat i...
Now you tell me - doesn't it look like Captain Kirk might materialize at any moment? Easter Seal/UCP of North Carolina and Virginia has a multi-sensory room at their Charlotte location. Ben tested it out this summer. It was $25 for the use of the room for one hour. The staff member at Easter Seals stayed with Ben and Sarah, the OT, the entire time. Ben refused to enter the room. He went so far as to pull his straps from his chair around his arms, something he NEVER does. (In fact I was lead to believe he did not have that particular skill.) He had to be rolled into the room and eased into the situation. Ahhh...the waterbed. Finally, Ben found something he liked: a large waterbed. For Ben it combined sleeping and water, his two favorite pastimes. If they had a TV playing Bob the Builder, we may never have gotten him out. Ben's OT, Sarah, helped him experience the different elements within the room. This is what the room looks like before en...
I was not there to see this and it took me at least a week to get the video to play for me. I worked harder when my mom bragged that she was able to open it on two separate devices. But here it is - pretty darn cute and impressive, but what would you expect me to say? The Background Story We want Ben to hold onto his handlebar when he rides his trike. We thought a textured fabric might help entice him to hold on. Sarah, Ben's occupational therapist and the Mary Poppins of OT, suggested we add plastic because Ben likes the noise and feel of it. We used blue duct tape to attach a few plastic pieces to the handlebar. It seemed to do the trick or he was just playing for the camera. Never know with that boy.
As Ben got on the bus this morning, the bus monitor told me that they had a bit of a problem with Ben. Last week, he took off his chest harness and tried to get out of his chair. Not taken by surprise by Ben's antics, it took me about a minute to think of a possible cause and solution: Ben sits alone at the very back of the bus in his Convaid Chair which is strapped into a special system for wheelchairs. He probably wanted to be in a regular bus seat with his friends. Ben is quite the popular man. His friends call his name as soon as the bus rounds the corner of our street. There are many wheelchair positions on the bus, but Ben's spot has been closest to the ramp which is 20 feet away from the action. I recommended that the bus monitor strap Ben into one of the wheelchair spaces closest to his friends. As I said this, Ben gave me a smile. Ideally Ben would sit in a regular seat with a special 5 point safety harness, but that would mean a bus monitor helping him walk up...
We had a great summer. Last year, I made the decision to keep Ben out of camp and home with us. We did it, with the help of Kim, who has been with our family since Ben was 4 years old. Each day, we planned some new adventure for the boys. We swam, hiked, picnicked, traveled, visited friends, watched movies and discovered the $1 ice cream sundaes at McDonald's way too late in the summer. That's Logan and Ben is about to wake him up. Logan and Sean liked having Ben around and Ben certainly seemed happier spending his time with us. Ben was engaged in the activities we did together. He observed activities and when he was ready, put himself right in the middle. On days we wanted to stay home to relax, and Ben wanted to go out, Kim gave him a choice of activities. He often chose walking the mall or going to Imaginon , a large children's library. On most of those days, he also visited Dunkin' Donuts, TCBY, McDonald's and other tasty places. If it weren'...