Thursday, November 29, 2012

A Message from Santa

If you have not seen this yet, check it out. It is a free personalized video message from Santa. This will be our third year receiving one from Santa:

Friday, November 23, 2012

Clorox $50,000 Grant

Power a Bright Future

Logan and Sean attend a local Montessori school. The school is in the running for a grant through Clorox.

Please take a look at this and if you feel comfortable, vote for their school.

To Vote:

1. Text 2439pbf to 95248   or

2. Vote online at Power a Bright Future

You can vote once a day per device until December 19, 2012.  Vote from your phone by text, your work computer, your home computer and your ipad.  Just VOTE!

Create an innovative TV studio where students collaborate
Highland Mill Montessori, Charlotte, NC

Program Detail:
Bringing innovative technology and local artists together will help our students become 21st century learners by creating a state-of-the-art television studio. We will collaborate to implement Montessori Philosophy, Common Core, and Media/Technology curricula through planning, research, and using the technology skills needed to produce quality broadcasting, which will result in helping our students become lifelong learners. Receiving new and updated technology would make a huge difference in how student research is presented to a larger audience. Good editing equipment, cameras, iPads, and installing the appropriate technology for every classroom would give Highland Mill high-tech facilities that would bring excitement to the students, resulting in well-produced shows including vodcasts.

How this Grant will Help:
The students would work closely with the local artists, musicians and news stations, interviewing and promoting their art and/or working side-by-side with them, as they learn the writing, videography, editing skills and production needed to produce top-quality shows. This grant would make a difference not only in our school but also in our surrounding community.

Wednesday, November 21, 2012

Trophy Envy

Clearly, Ben's brothers were more excited about the trophy than he was about it. But then again, they were more excited about the whole baseball thing too. Oh well!

Monday, November 19, 2012

Braced for Day and Night: Part I

The shoes Ben is wearing are especially for use with AFOs.
Every six months, Ben is allowed to receive new braces (ankle foot orthotics), shoes and socks through insurance and Medicaid. If for some reason his foot should grow too quickly in that amount of time, we could ask for special permission. We have not had to do that yet; luckily six seems like the magic number.

After being cast, it takes about 2-3 weeks for the braces to be made. We use Level 4, a company that makes its own braces. Our orthotist, Steve, is involved throughout the process, to ensure Ben gets the best fit.

This time, before we went in for casting, Ben visited an orthopedic surgeon. I wanted a new set of eyes on Ben's pronated feet, which seemed even more pronounced lately. The surgeon suggested Botox, something he did not do, but our neurologist certainly would do.

After the trip to the neurologist and a very definite "no" about her office injecting the Botox, we were sent to a physiatrist. At this point, I felt like, "If You Give a Mouse a Cookie...", but I persisted and Ben allowed himself to be poked and prodded.
Ben's new PT shared with me that in some places, they are not aware
of the special shoes and socks that can be used with orthotics.

Although the physiatrist's office offers Botox injections, she first suggested a few other things that are less invasive. The doctor wanted to start a dialogue with Ben's physical therapists and orthotist about Ben's walking issues and how to make them better. A novel idea - talking with other people who work with Ben on a regular basis to determine a treatment plan. I was quickly impressed with her team approach and Ben loved her long hair and doting staff - we were hooked!

The result of the discussion with the PTs and Steve was harder plastic on Ben's AFO's and adding braces to wear on his legs while he was sleeping. One of Ben's issues is that he bends at the knee when he walks. This is a result of weak and tight hamstring muscles. The harder plastic is supposed to give more stability and the night brace will stretch the hamstring muscle.

There are special socks specifically made for use with AFOs. 

From afar, I watched Ben walk at a church family gathering on Friday and felt sure his heels touched the floor most times he took a step, and he was not slouched in the knee either. A+ for the team!

Sunday, November 18, 2012

Say It Again, Baby!

We waited six months to receive Ben's NOVA Chat 10. It arrived about three days before the burglary. It sat on the kitchen counter with one sheet of paper covering it. It looks like an ipad. That it did not catch the thieves' eyes, I can only believe it was Ben's guardian angels hard at work.

This is the homepage for a helper to use first.
Each button goes to a field of  two for Ben to make a choice.
After many hours of setting up a simple platform we can use with Ben, we started using it just two days ago. We all expected that it may take a year or even more for Ben to get the concept. I believed that if we stuck with the process, he would eventually "get it".

It took 30 seconds or less for Ben to "get it".

Let me give you a few examples to illustrate what I am talking about. In each of the examples below, Ben was given a field of two choices.

1. Smoothie or Cottage Cheese, Ben chose Cottage Cheese. He ate it, three different meal times. Our "go to" food for Ben is a smoothie. He visits our fridge and we usually get out the smoothie for him. We were sure he made the wrong choice and would push it away. We were wrong...and shocked.

2. Smoothie or Snack, Ben chose Snack. He ate the crackers and milk I gave him. After school, Ben gets his afternoon smoothie. When given the choice, he wanted something different. I may have to retire the blender.

3. Watch a DVD or Sit in Quiet. Ben chose quiet. Ben sat on the sofa for 20 minutes. He can crawl to the TV and get out the DVDs. If he was not happy with his choice, he could have done that, but he did not.

4. Use Walker or Use Chair. Ben made appropriate choices each time at a church gathering. It prevented him from wriggling out of his walker, often causing him to fall and hit his head. I will add real photos of his walker and chair to the device.

5. Take a Bath or Continue to Use Toilet - Ben chose bath and had a great time floating in the tub.

6. I Need a Break or I Can Do More Work - At physical therapy, he was offered these options and he worked harder than normally after choosing the latter choice.

7. I Want a Fig Newton or I Want a Z-Vibe - Ben's speech therapist, a quick learner, made a new page with those two choices. During her session with Ben, he made choices throughout, and very happy to do so.

The system we set up is easy for us and Ben. Anyone who comes in contact with Ben can use the system we have designed. It does require an adult or trained child to use it with him. Our hope is that we can eventually introduce more choices on a page. Right now, we are focusing on using it consistently at home. I hope to start using it in the school setting in January. We will have to build a school system with its own specific choices before we can do that.

At a later date, I will explain in detail how I setup the platform. Right now, I just wanted to share the excitement. This counts as one of those unexpected thrilling adventures.

* A very strange aside: While pregnant with Ben, I got it in my head that we had to name our baby, whether boy or girl, "Nova". Eventually, I allowed new names to be added to the list; however, the name, Nova, was a strong force within me. Hmmm...something to ponder.

Saturday, November 17, 2012

You ARE in Good Hands!

We are more than a week away from the break-in, and with information, a few more locks and the advantages of a surreal experience, all is settling down at our house. First, our insurance company, Allstate, has been generous with their coverage. At the time of the break-in, I had absolutely no idea about what would be covered. Unbeknownst to me, our insurance agent, whom we have been doing business with for over 15 years, had us covered for every possible scenario. Allstate has an express office to handle some claims over the phone and computer. Fortunately, our situation called for use of this service. Within 24 hours of turning in my list of stolen items, they had a settlement for us. We have 6 months to make changes, add items and dispute the claim.

The police investigation appears ("appear" is the operative word here because no one is telling me anything) to be moving along. Since the burglary, we found out that two neighbors saw one of the perps (always wanted to use that word) running from the direction of our house. Another neighbor saw a small car in our driveway at the time this was all going down. Yesterday, I came home to an undercover officer sitting in a blacked out SUV, I assume watching the area. He would not speak to me after flashing me his badge.

Driving from pawn shop to pawn shop is cheaper than therapy. I assured my friend who went one morning with me to try to find my mom's ring that I realized that this was more therapy than a jewelry finding exhibition. She was glad to know that I had that self-knowledge.

Ryan and I, the eternal optimists, are still holding out that the police will find the perps with our loot hidden in their closet. Until then, I am repurchasing what is replaceable and working through saying goodbye to the ones that are not.

Saturday, November 10, 2012

B&E in Whoville

We were robbed yesterday. I came home at 1:30 pm and as I walked to the back door, I saw one of the French doors wide open. Let me stop there - for those who know our family, it is not unusual for a door to be wide open with no one at home. My first thought was that my husband came home for lunch and used that door for some reason. But then I saw the glass and got back in my car quickly. I have yelled out loud too many times in the movies as the ominous music plays in the background and the disposable character walks into the dark house with a blood trail leading up to it. I was not that fool.

I drove to the front, called Ryan and then the police. At the same time, our new neighbor came out. After I told him what I saw, he said he had seen someone running from our yard at about noon. He had a fairly good description of him.

When we finally entered the house, it was a shock for me to see our stuff thrown around. In some rooms, it was like what you see in a movie with dumped drawers and baskets. Cabinets, closets and drawers were open, contents spilled out.

I am sure there is a prescribed way for victims to process the experience of being violated - disbelief, anger, sadness, fright. We are feeling the whole range of emotions. And just when I think I have moved on from sadness, I realize something else is missing and that feeling pours all over me again. Sleep was hard, if not impossible last night. My mind was racing, processing the experience, trying to make sense of a senseless thing.

There are always "what ifs" in life, but unfortunately we cannot go back. We can move forward, change the way we do things and learn from mistakes. Here are a few things I can pass on:

1. When you purchase something like a computer, TV, camera, etc. - copy the serial number down onto the receipt or instructional manual and file it away. The serial number is invaluable to the police who can use methods to track down your items at pawn shops.
2. The police recommended that we do not tell the boys. We were able to clean everything up before they returned home at 6pm. They have not noticed their missing piggy banks yet. I hope to replace them before they do.
3. Do not leave laptops, cameras and camcorders out in full view. They are easy access not only for you, but for a thief. When I first purchased my laptop, I hid it every time I left the house. Then I got lazy.
4. According to the way our house was searched, the usual places are where they go - master bedroom and closet were the main places searched. They looked under our mattress, in our nightstands, underwear and sock drawers. They were also looking for drugs and looked in our medicine cabinet. If you are going to hide your possessions, be more creative. Thieves are not.
5. Use a safety deposit box or good hiding place for your jewelry or sentimental possessions I lost some pieces that I rarely wear, but are still very important to me.
6. Know your neighbors. I met our new neighbor through this experience. He thought something was not right, but he brushed it off because we had been doing work on our house. If we knew one another, he could have called me to check.
7. Add deadbolts, window pins, alarm system and/or dogs - whatever fits for your family. We are making our Home Depot visit today.

The boys came home at 6pm, and we ate dinner, talked about their final swim lesson and the small ceremony they held for them. I read to Sean, Ryan played chess with Logan. Ben decided to join us when he thought he might get dessert. As I walked around our home, turning down lights and double checking the locked doors, I thought of the Who's in Whoville waking up Christmas morning and joining hands and singing. The Grinch was shocked how losing their presents did not phase them. They still came together to sing. They still had each other.

And that is what matters.

Tuesday, November 6, 2012

Person Centered Plans - Real Stories

Let me tell you first that this video is 21 minutes long. And it does not get all that interesting until 6 minutes into it. With that said, it is worth listening to, even if you listen while you do other work. The pictures in the presentation are not as important as the story.

At the center of the story is a boy named Kenny who has several severe special needs. With the support of his parents, teachers and other people, he is able to find himself working at a chicken farm in NYC. The presenter goes on to tell stories about other people who have found their special place in this world.

Thank you to Cousin Angela for sharing this with me.

Sunday, November 4, 2012

Reading Between the Pixels

At my last trip to the public library, I found a DVD of children's stories being read aloud. A story we just read, The Man Who Walked Between the Towers was featured. Having been only four years old when Phillipe Petit made his daring walk between the Twin Towers, I was not familiar with the story. After reading the book, our whole family was intrigued by this stunt. I snatched up the DVD and surprised the kids with it.

We ended up watching this particular DVD at least two times. There are three other stories after The Man Who Walked Between the Towers. There are several reasons why I liked this DVD. As the narrator read the story, the words were highlighted on the screen. The camera panned over the illustrated pictures throughout the book. There were no added caricatures or moving parts. The focus was on the words and pictures and not on added frills and thrills.

At some point, I realized Ben was still hanging with us. Usually, our family movie nights are interrupted by Ben leaving the room because he is not interested in what we are watching. He crawls to his room and waits while I turn on something he enjoys.

The next story on this DVD was about Benjamin Waterhouse Hawkins, another remarkable true story beginning in the late 1850's in London. Once again Ben showed continued interest in the story.

Now I have another new mission in life - find more of these kinds of DVDs for Ben to watch. My mom reminded me that there are free websites with books being read aloud. Ben's computer now has Internet so last night I set him up on his bed, and together we watched Arthur, The Lady with the Alligator Purse, Edward and the Pirate and a few more.

Of course there is no substitute to reading to your children, and I intend to continue doing so with Ben. This, however; opens up a new avenue for Ben to learn. Ben's latest IEP is more challenging, with goals that both surprise and excite me. If they are raising the bar at school, we need to do so at home.

Once I started looking, I found so many sites for books being read aloud. Some are homemade and some are professional. It will depend on what your child likes. Here are a few of the sites I found:

Magic Keys
Elementary Books
Just Books Read Aloud - No frills, but also no ads or distractions.
Pinterest Books Read Aloud

There are some websites that require the child to touch the screen or use a mouse for each word to be read. Depending on your child's level of development, there are options for more challenging and interactive reading. Feel free to send more sites my way so I can post for others to see.

And if Phillipe Petit's story touched you, here's a bonus:
Signature photo

Friday, November 2, 2012

Last Fish Standing

Ben's Fish

About two months ago, Sean sold his train table and used the money to purchase fish and equipment for a tank that was given to us. With some encouragement, he graciously let each family member choose something to add to the tank. All was going well until we got overzealous with cleaning the tank and altered the balance of good bacteria, causing the fish to get ich (pronounced ick), a fish illness, caused by a change in the environment.

Similar to Oscar Wilde's statement about art imitating life, this was clearly an example of the aquarium imitating life. Ben's fish, named John, was the sole survivor of our fish fiasco. Not unlike Ben, John handled the changes in the tank without stress or white spots.

And if you are wondering if we flush our fish, we do not. We may be the first family with a fish cemetery. Each were buried in a pudding box with the site marked by a stone. Ryan oversaw these services and closed with a prayer.

Sean chose a new fish to join John and named him Oochee (pronounced oochee). We can only hope that John will show him the ropes.