Tuesday, December 24, 2013

Zooming on the Polar Express!

Merry Christmas from the North Pole! The kids took Grandpa on the Polar Express to see Santa.

Saturday, December 21, 2013

Graham Cracker Village

 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 – several packs
  • Neccos 
  • Meringue Powder
  • Confectioners’ sugar
  • Rod pretzels – long and short
  • Ziplock bags
Royal Icing is the edible glue that holds the graham crackers and candy together.
3T            meringue powder
4 cups      confectioner’s sugar
6T            water

Mix together, put about a tablespoon of icing in snack size Ziplock bag and clip corner. Each child will need at least one bag of icing for their house.

Thursday, December 19, 2013

Coffee Break

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.

Wednesday, December 11, 2013

Flushed Down the Toilet, Temporarily

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 read.

Our local radio talk show host, WBT's Keith Larson, wrote this book about how the Carolina Panther's 2003 football season and his own life collided with a 12 year old girl named Hope. Hope had an incurable bone cancer and when Make A Wish Foundation came to her house to ask about her wish, Hope asked how many children were on the list. 155 was the answer. Hope's wish was to get all 155 wishes met. This meant raising 1 million dollars, and Larson's story tells how the city jumped to the challenge and how lives were changed by a little girl's wish.

Remarkable reading at the right time for me. I ended my pity party, and I still do not have a Plan B yet - I promised Ryan to wait until after his exams to discuss strategy.

Tuesday, December 3, 2013

The Real World of Tom & Jerry

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 car, but the cat would not get out. It flung itself against the glass in the back of the car multiple times. This cat was freaking out and freaking me out. I opened more doors and finally it escaped.

The night before this fiasco, I came home with the boys from school and the car door was left open. When I realized it was open at about 7pm, I asked Sean to close it. He ran out and shut the door. Unbeknownst to any of us, the cat was in the car when the door closed.

A few hours later, Ryan assessed the damage and cleaned the car out. He mentioned that he had seen what he thought might have been mouse droppings, but he was not sure. I was relieved to have the cat out, and never gave it another thought.

On Thanksgiving Day, I cleaned out the car to make room for more passengers. I lifted the retractable seats and found mouse droppings all over the entire trunk area.

Our best guess is that when the cat jumped in our car he had dinner plans that included his freshly caught, but still alive mouse. And this mouse had other plans that did not include being eaten. The mouse got away from the cat and an old fashioned cat and mouse chase ensued inside our car. The mouse survived the chase and had been living in our car for a week.

As for the mouse, we may need to apologize to our relatives in Atlanta because we may have left an uninvited house guest behind. I don't want to think of the other option...it is still in the car.

Sunday, December 1, 2013

When Film Imitates Life

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!

Thursday, November 21, 2013

Typing 101

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:


I am, ironically, speechless.

Friday, November 8, 2013

Love Love INC

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 does because it is his calling. Steve has only two rules for working with groups that build ramps: (1) Wiggle your 10 fingers now, before we start, and you should be able to do the same when we finish the project, and (2) If you are not here to have fun, you may please go home. 

Steve's big heart, enormous dedication and faith, genuine love for helping others combined with great coordinating and building skills make for an unbelievable volunteer and role model. Once again we are blessed to have met this person through Ben.

Although we were there for Steve, there were a few other people recognized at the banquet. Their stories were told as well. Each one of them had an important reason they started their volunteer project.

One woman told how she had difficulty conceiving a child and when she finally did welcome a little boy into her life; she became aware of how hard it was to be a mom despite the resources she had at her disposal. She came to the realization that many mothers are not as fortunate as she - no family support, no partner, no ability to get diapers or wipes and sometimes eviction is imminent. With this knowledge, she started a program to teach classes monthly for new or soon-to-be moms. She has helped almost 300 moms thus far.

Another woman told of how although she was having a great time in her Bible study class, the group was not "doing" anything. She went home and thought and prayed about what the group could do. 

At this point in the program, all the speakers had been phenomenal. Each one with incredible stories, making me laugh and cry. This specific woman in front of me was young, attractive and well dressed. She was introduced as just having gotten married two months prior. In my eyes, I had her pegged based on what I saw and what was told to me in the short introduction.

The woman continued her story about her quest to find something meaningful for the Bible study group to do. "Remember when..." is what came to her mind. With tears in her eyes, she shared with us that several years ago, she and her four children, were in a position that she could not afford toilet paper. And with remembering this, the idea for a project came to mind - provide personal hygiene items for families who cannot afford them. So simple a project, but with a huge impact. This woman shared a few stories of people she has since helped that appreciate the shampoo, toilet paper and other essentials most of us take for granted.

On the car ride home, I told Ryan that I never imagined that people in this country would have to go without toilet paper. I had never considered this. It is obviously not a fun thing to think about, but it opened my mind to what other people go through in their effort to survive and provide for their families.

* My recollection of the people and their speeches pales in comparison to the real thing. The stories were heartfelt and genuine. Each volunteer dedicated to sharing their time and talents with strangers, and they gained more than they gave through the experiences and the people they met along the way.

Saturday, November 2, 2013

Sleepless in the Carolinas

Not sure if my itchy Zombie head or Ben's screeching kept me up most of the night following Halloween. I took a shower at 4am to relieve the itching (Note to myself: Shower after a Zombie night) and when I came out, Ben seemed quieter. I did not dare hope he was asleep, but at least quiet for a bit.

For many years now, Ben wakes anywhere between midnight and 3am and does not go back to sleep no matter what we try. His prescribed sleeping pill and melatonin have absolutely no affect on him on these nights. Even if we increase the dosage based on doctor's recommendations, Ben is unable to sleep.

I have not charted it, but my best estimate is that it happens about once a month to every six weeks. It could last two or three nights in a row.

It does not seem to be affected by what Ben eats, change in routine or amount of physical activity. All in all, it does not influence his behavior or abilities the next day either. After a night of no sleep, I have had the teacher tell me he has had a great day, and sometimes she has said, he has had his best day yet. Certainly, he does not take after his parents in this area.

Ben's behavior during this wakeful time is happy and active; he may crawl around the house or he may stay in his bed and watch a video. If he is feeling mischievous, he will crawl into bed with Logan. No matter what, he is loud. When he watches a Bob the Builder video, his laughter is almost maniacal. He cackles like he is having the time of his life.

When I am not corralling him to his bed, making a smoothie or changing a pull-up or video, I try to catch short naps. His jolts of laughter in a very quiet dark house are enough to wake the dead, but fortunately, brothers and Dad usually sleep through it all.

We are not sure what this sleeplessness is caused by - seizure activity is my best guess. It would be almost impossible to schedule an overnight EEG during one of these times unless we were certain of a pattern. I did write in my calendar the date and times he was awake this last time. Perhaps if these bursts of energy are caused by seizures, then additional medication could be given to him on these nights.

A solution to this would be wonderful because after two or three nights of this, I don't just play a Zombie on Halloween, I become one of the walking dead for real.

Friday, November 1, 2013

Wheelchair Basketball

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 system and each athlete is given a specific number based on their injury or disability. For example, an amputee who has use of their abdominal muscles and a larger range of motion will be assigned a higher number. A person with a spinal cord injury will have a lower number based on how high their paralysis affects them.

In order to balance the teams, the total number any team may have is 12. This number is achieved by adding up the individual athlete's classification number.

The game was fast paced, rough and tense, and we had free front row seats to it all. At least 3 times, we saw wheelchairs topple over, usually because the player was aggressive. Once we realized it was a normal occurrence and usually caused by the player himself, it was not quite as alarming.

Ben was interested in the game the entire time, as long as we kept a constant flow of food and drink into his belly. (I think he is going through a growth spurt.) Being on the gym floor made it very exciting. Balls came at us, players barely missed us and refs asked the boys if they wanted to throw the ball in.

These teams play 50-60 games a year and I am sure we will catch another one soon!

Thursday, October 31, 2013

You Meddling Kids

Happy Halloween!

With Scooby Doo and Shaggy after the Pumpkin Head Soldier, 

the infamous line ran through my head, 

"...and I would have gotten away with it, too, if it wasn't for you meddling kids."

Thursday, October 24, 2013

Special Olympics - An Excluding Experience

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 the ramp Bocce Ball event. None of the other children in his school are in wheelchairs so they all go to another part of the same park for their activities while Ben is left behind.

We are all too familiar with Ben's dislike for participating in sports, with his real interest in spectating. The interaction with his classmates, teachers and assistants are what he most enjoys. Except for an occasional visit from a teacher or old friend, we waited apart from his friends.

The Special Olympics program is, for the most part, run by volunteers and school staff, who have the best intentions and would not leave a child out on purpose. No one is there to be exclusive, mean spirited or hoard all the Gold medals. With that said, when your child or grandchild is left out, it still hurts, no matter the good intentions.

For me, another learned lesson. There are easy remedies, and I am already taking the steps to make them happen for future events.

Monday, October 21, 2013

Uncovering Ben's Strengths, Part 2

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 called me 15 minutes after we left to say that Ben did very well. He made it to the vocabulary list that required phonetic spelling for the proctors.

Then she called me a few days later to say that the preliminary results show that Ben's memory (after reading a story, they tested his recall) was in the "Below Average" range. Average IQ is 90-110, and Below Average is in the 80 range. Ben's receptive vocabulary was in the high 70 range.

The doctor also believed that his scores may be even higher because it is hard to get accurate results with the way in which they have to test Ben. They had to modify the test to fit for him. With a verbal person, they would read a story and ask them to recite all the things they remember. With Ben, they asked him specific yes and no questions about the story.

This is all very exciting. We still have another testing session in November. These results only verify what many of us already knew - this kid has a lot going on in his head. Now we will have doctor's recommendations about best education and learning styles for Ben in order to develop an educational plan that will support and challenge him.

Sunday, October 20, 2013

Uncovering Ben's Strengths, Part 1

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 had a Bob the Builder video pulled up on her computer. She also recommended a few things that she thought would interest Ben based on what she read about him and what I told her about his interests.

Rube Goldberg Machines - I did show Ben this quick video and he seemed interested in what they were doing. I emailed the company to see if they have longer videos of their contests. If the boys want to build one at our house, I think that would be great too.

Frigits - This is something we can get for the house relatively easily. They are not as exciting as the Goldberg machines though.

The doctor also shared a resource that I had not heard of before:

Do It at the University of Washington

This was the first meeting and the doctor did get to see a bit of Ben's personality come out - he gave high fives to the two young women proctors and deliberately did not give the doctor one. Ben did not complete any of the testing that day, but we scheduled a time to come out with the OT.

Saturday, October 19, 2013

Genetics...A Guessing Game

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 and occasionally steal pens and personal items out of pockets.

Friday, October 18, 2013

Just A Little Love

Uncle Brian captured these moments last night and they were too good not to share.

Wednesday, October 16, 2013

When a Cabbie and a Bicyclist Meet

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 been called in by several other people. The police had been dispatched.

All during this time, we were panicked. The yelling was loud, it sounded like multiple people were beating on one person and that person was calling for help. Ryan kept us quiet with the lights off and away from the door because he was afraid that they would try to get into the house. At this point, we could only hear what was happening, and we did not know if anyone had a gun or a knife.

As we were hiding out in our dark bedroom which is in the very back of the house, I heard Ben yell out. The noise had woken him up. Ben crawled his way past the doorway and made it to safety. I later set him up with a video and he was happy as a clam.

Finally, the police arrived. I say "finally" because it seemed like forever, but in reality it was 2-3 minutes. With the man yelling "help" repeatedly, the decision to stay or help was weighing on my soul. Choosing the life of a stranger over the safety of our own family was not one Ryan nor I were willing to make.

An ambulance and a fire truck arrived. We still had not ventured out from the back of the house, so we could not see what exactly was going on. I was convinced they found a dead body. (I do have a wild imagination.) Ryan went outside to see what happened, but was not given any information.

After about 90 minutes, the police knocked on our door. They told us that three blocks away, a drunken bicyclist put his hand through the rear window of a cab, smashing the glass. He took off and the cab driver followed him. The bicycler stopped at our house and ran to our front door. The cab driver grabbed him and dragged him down our steps, thus scraping the bicyclist's knee. I am not clear on this point, but one of these two men were calling the police while the other kept knocking the phone out of the other's hand. The bicyclist's injured hand spurted blood all over our steps and walkway.

The reason the police were knocking on our door was to tell us that due to liability issues, the fire department would not clean up the blood. Logan was with us listening to every word and when we finally looked past the officers, we saw the blood everywhere. Logan broke down crying. He had been a brave soul throughout the entire ordeal. It was a lot for a little boy, not to mention his adult parents, to take in.

With the police's declaration of not cleaning the blood, in my sleep deprived, scared out of my wits state, I said, "My husband has a power washer and it should do the trick."

The crime scene was cleared, everyone had left and with adrenaline still coursing through his veins, Ryan cleaned the blood from the porch, steps and walkway. A guy with bushy hair and beard with a busted hand and knee walked up to him. He apologized for the blood and was wondering if he could look for the eye glasses he lost during the fight. All Ryan said was, "The blood is the least of my problems."

A neighbor across the street sent a text to see if we were okay. They too were terrified and were hunkered down in their home.

We all agreed not to tell Sean because he never woke up during the night. The blood was clear and nothing else would have clued him into something strange happening in the middle of the night.

First words out of Sean's mouth when he awoke, "Did you hear all that noise last night? Some people woke me up. I thought it was a dream and then I took away the sleep and the yelling was still there." I asked if he was scared. "No." I think he rolled over and went back to sleep.

Logan told a few friends at school about the story. He said half of them did not believe him.

On Sunday morning, we saw who we think was the bicyclist riding around - we all chuckled.

We laugh about it now, but it was one of the most frightening moments in our lives.

Tuesday, October 8, 2013

Disney Policy - Magical?

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?

Saturday, September 28, 2013

Tobias' Letter

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

Tuesday, September 24, 2013

Disney Makes Policy Changes

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:

Thursday, September 19, 2013

Celebrating 4 Bl&*%ing Years!

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.

Thursday, September 12, 2013

NOVA Chatting - Part 2

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 careful to express my desire that the group brainstorm ways to use the NOVA Chat with Ben at school. I am in no way an expert on using the device or on teaching - they have the knowledge to use the device in creative ways.

Continuous follow-up, training and communication is needed in order to get the consistency we expect at school. Right now, the support is there from the teacher and the administrative staff. The challenge will be to get some of the other folks on board.

I sent a thank you note to each participant the night of the training. I received emails from the the assistive technology representative letting me know she will be coming to school regularly to follow the progress and lend support to the staff, and another one from the head speech pathologist for the district letting the group know that she is available for support.

Already, Ben's teacher has been in touch with me on what to add and change to fit for what they are doing in the classroom. I think she may be the one who gives me a run for my money...but that's a good thing!

This is the agenda I used for the training:

NOVA Chat Training
September 2013

Why is it important to use the NOVA Chat?

  •  It is an acceptable way to communicate. Ben understands how to use it.
  • We have had much success at home with it.
  • Ben has gained independence and control through making choices about what he wants to do.
  • Ben is able to learn and show us how much he knows.

How difficult is it to use it in the classroom?

  • Need time to setup pages. Once they are setup, it is easy to use.
  • Takes the commitment from everyone to use it consistently.
  •  Takes patience. Like any kid, typical or otherwise, there will be times that work gets pushed away. I remind myself that my other typically developing boys push back on homework, chores and activities all the time. They use their voices. Ben pushes back too with actions, usually a refusal to cooperate.

How will it benefit me?
  • It will make your job easier than trying the old methods that may not be as effective for Ben .
  • You will see results in Ben’s progress.
  • You will learn a new skill that is up and coming in the world of children with special needs.

Daily Classroom Uses
  1. Sight/Spelling Words
  2. Spelling
  3.  Math & Counting
  4. Reading & Reading Comprehension
  5. Toileting – Give Ben a choice to use the bathroom
  6.  Conversations with Classmates
  7. Choices – take a break or go on
  8. Lunch Choices
  9. Any time there is a choice, allow Ben to make it. 

Applications Other Than NOVA Chat
  • Math
  • Reading
  • Counting

Website Resources        saltillo.com/products/nova-chat-10

·         Saltillo offers free online classes for anyone interested.

Monday, September 9, 2013

NOVA Chatting

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 is important and its various uses in an educational setting, then go over some of the features using the actual device and then show the video we made last week. Then there will be time for Q&A.

Wish me luck! I will let you know how it goes.

Thursday, September 5, 2013

Beam Me Up Scotty!

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 entering. Everything is white and very clean. Shoes are not allowed in the room.

Wednesday, September 4, 2013

Trike Power

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.

Tuesday, September 3, 2013


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 and down the bus stairs. At his most recent weight of 70 lbs, I believe the chair is the safest route for everyone.

So what happened to the back of the bus being the cool place to sit? Times are changing!

Monday, September 2, 2013

A Special Note

We were on the Grin Kids 2011 Disney Trip with this family, and we stay connected through Facebook. This is a great story that has gone viral:

Friday, August 30, 2013

The End of Summer

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't for Kim, I would not have made it through the summer. Rather, we would have made it, by staying at home watching videos all day long. Her help was invaluable. She challenged Ben, made sure he walked, made decisions and completed the activities he could do on his own. His walking in the pool improved because Kim expected him to walk back and forth many many times. (Unfortunately, it did not seem to tire him out all that much.)

The summer has come to a close. It is an easy decision to make for next summer - Three Musketeers together again. We would not have it any other way.

As for Kim...I don't dare ask her about her plans yet. She needs time to recuperate...and forget!