Monday, December 31, 2012

Getting His Just Desserts

The day after Christmas, we spent an hour walking on the greenway that meanders through our city. The large fountain was empty for the winter and Logan and Sean saw this as the perfect opportunity to race through it. Ben watched them, giggled a bit, then suddenly went crazy trying to get out of his chair. Interested in getting Ben some walking time in, I obliged by getting him out of his seat.

At the moment he was free of the chair, Ben pulled me in the direction of the fountain. (Imagine a large dog pulling its owner - that's how I felt.) We climbed over the fountain wall and kept walking across the circle. I thought Ben wanted to be a part of his brothers' shenanigans, but I was wrong.

When we reached the other side of the fountain, we climbed over the wall. Ben kept pulling me in this same diagonal path he had chosen. If we kept going, we were going to hit the street, not a place I wanted to venture.

Where the heck was this kid going? He clearly had something on his mind.

Then I looked up. Dunkin Donuts was directly ahead of us. Across the street, it was located exactly diagonal from the point where we started on the other side of the fountain.

Luckily Grandpa was there to run across the street and reward his very determined Grandson with a donut.

Happy New Year!

Wednesday, December 26, 2012

Access4Kids: Helping Kids Communicate

Here is yet another way children with disabilities can communicate - by using this special arm device to access a tablet.



Monday, December 24, 2012

Christmas Carolers!

It was icy cold with a slight breeze, but we braved the elements and sang our favorite Christmas Carols for our community and neighbors. Our first stop was at a house that requested our performance. They had Trader Joe's cookies waiting for us.

People are not used to carolers and we get many reactions from our impromptu audiences: some listen while standing next to the window, others grab family members from inside so they too can hear the singing, while others walk quickly back into their house after one song. For the most part, everyone enjoyed our singing. I can understand it is awkward to stand there while a group sings to you a bit off tune.
The kids love it - they run ahead, ring the doorbell and then belt out the words to Jingle Bells and Rudolph.  Each year, we gain a new family to our group. Once you start this tradition, it is hard to let go.

Ben is in the left-hand corner of the photo hugging Elizabeth, his former teacher.

Sunday, December 23, 2012

One More Chance

Ben made a last ditch effort tonight to repair his relationship with Santa. As soon as he saw the jolly man in the red suit, he jumped into his arms...and gave him a hug.

Saturday, December 22, 2012

Annual Graham Cracker House Party

Log Cabin: The pretzels were part of our healthy snacks, but this kid had  better plans for them!

Her parents are in the construction business.

For as long as I can remember we have hosted a Graham Cracker House Party for our friends and neighbors. This year we had 14 kids (and their parents) participate. Everyone helps with supplies, setup, building, decorating and cleanup. This year, we had Mimosas for the parents - a great addition that I highly recommend.

Expect some chaos.

If you want to host an event like this, the list of candy, supplies and the instructions to give each parent are below. My nephew's birthday is in December and my sister hosted a birthday party for 13 boys, and they each made their own house. My sister recommends getting two mixers and have the Royal Icing II dry ingredients measured ahead of time. I did this, and it cut down on time because once the kids start building and decorating, they need a lot of the "glue" quickly.

We also offer healthy snack for the kids to munch on in between the snatches of candy they consume.

Build Your Own Graham Cracker House

Everyone bring:

  • 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 of honey graham crackers – any brand. 
  • Tape the foundation firmly to the cardboard.

Supplies Needed (Each child is assigned 2 items to bring and share with the group):

  • Mini marshmallows 
  • Tootsie Rolls (small type)
  • Green leaf candy
  • Gum drops, assorted colors
  • Red & White Peppermint candies
  • Mini candy canes
  • M&M’s
  • Twizzlers
  • Skittles
  • Chewing gum – Big Red – several packs
  • Neccos 
  • Meringue Powder 
  • Confectioner's sugar
  • Ziplock bags - add icing to bag and kids use this as a pastry bag after clipping a small corner of the bag 

Royal Icing Recipe I
3 egg whites - frothy
4 cups confectioner's sugar 
Sift with 1/2 teaspoon cream of tartar

Add together and Beat 5-10 minutes until right consistency
Keep covered with wet paper towel so it does not dry out.

Royal Icing II - This is a new (for me) recipe. We used it this year and liked that we did not have to deal with the eggs.

3T            meringue powder
4 cups      confectioner’s sugar
6T            water - we added more to get a smoother consistency

Add together and Beat 5-10 minutes until right consistency
Keep covered with wet paper towel so it does not dry out.

Logan and Sean's final products.

Friday, December 21, 2012

Friday, December 14, 2012

A Letter From Heaven

There are no explanations, ways to find purpose or reason in what happened in Connecticut today. We cannot wrap our minds around the tragedy and our hearts hurt. Anger, blame, disbelief, sadness and the need to hold our own loved ones closer are the prevailing feelings.

I found this poem and wanted to share it here:

To my dearest family, some things I'd like to say 
But first of all, to let you know, that I arrived okay.
I'm writing this from heaven, here I dwell with God above 
Here, there's no more tears of sadness; Here is just eternal love. 

Please do not be unhappy just because I'm out of sight; 
Remember that I am with you every morning, noon, and night. 
That day I had to leave you when my life on earth was through 
God picked me up and hugged me and He said, "I welcome you." 

"It's good to have you back again, you were missed while you were gone, 
As for your dearest family, they'll be here later on. 
I need you here badly, you are part of my plan, 
There's so much that we have to do to help out mortal man." 
God gave me a list of things that he wished for me to do 
And foremost on my list is to watch and care for you. 

And when you lie in bed at night; the day's chores put to flight, 
God and I are closest to you, in the middle of the night. 
When you think of my life on earth, and all of those missed years, 
Because you are only human, they are bound to bring you tears. 
But do not be afraid to cry, it does relieve the pain, 
Remember there would be no flowers, unless there was some rain. 

I wish that I could tell you all that God has planned, 
But if I were to tell you that, you wouldn't understand. 
But one thing is for certain though, my life on earth is o'er, 
I'm closer to you now than ever was before. 
There are many rocky roads ahead of you and many hills to climb, 
But together we can do it by taking one day at a time. 
There is a very wise philosophy and I'd like to share it with you, 
That as you give unto the world, the world will give unto you. 
If you can help somebody who is in sorrow and pain, 
Then you can say to God at night, "My day was not in vain. 
And now I am contented, that my life is worthwhile, 
Knowing as I passed along the way I made somebody smile." 

So if you meet somebody who is sad and feeling low, 
Just lend them your hand to pick them up, as on your way you go. 
When you're walking down the street and you've got me on your mind, 
I'm walking in your footsteps only half a step behind. 
And when it's time for you to go, for that body to be free,
Remember you're not going, You're coming here to me.

Written by Ruth Ann Mahaffey

Monday, December 10, 2012

Monday, December 3, 2012

Enduring Love

This is Ben with his former preschool teacher, Elizabeth. 
When she walked into the room, he had eyes for no one else. 

You Never Know
You never know when someone
might catch a dream from you.
You never know when a little word or something that you might do, may open up a window
of a mind that seeks the light.
The way you teach may not matter at all, but you never know, it might.
And just in case it could be
that another's life through you
might change for the better
with a broader, brighter view.
It seems it might be worth a try
to do what you know is right.
The way you teach may not matter at all, but you never know, it might.

Saturday, December 1, 2012

Free Online Software

My mom mailed this to me many months ago and then I lost it.  She was nice enough to find it again, scan it and email it to me. These sites are not just for children with special needs. Here it is for you to see and share:

Provides learning tools to enhance learning for all children.

Enables users to create, share, publish, and read digital books that engage young readers.

provides books that readers can view in sign language and with subtitles. Books are also in audio, and users can easily share them with friends and family.

 Furnishes nursery rhymes with child actors who animate the poems. 

 Allows for creating, sharing, and publishing digital books for repeated readings and includes wonderful prompts to help children begin.

 Provides application software that reads any text on a computer.

Provides a text-to-speech plug-in for MS Word.

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.

Wednesday, October 31, 2012

Happy Halloween!

The Pirate, Professor Charles Xavier and 
Raphael of TMNT say Happy Halloween!

Monday, October 29, 2012

Celebrate the UPside of Down™ during National Down Syndrome Awareness Month

Ryan has had an impact on our family. He is the son of one of Ben's former teachers and has Down syndrome. Our families have become friends, doing things together and looking forward to one another's company. If I did not have their friendship, I would be in the dark about Down syndrome.

When a petition about National Down Syndrome Awareness Month was brought to my attention last week, I did not hesitate to add it here. Please take a minute to look it over and see if it is something you want to support by digitally signing the petition.

Feel free to share with others through email, Facebook or on your own blog. The people behind this are working hard to get the word out, and as we have all learned, social media is the way to do it.

"Dr. Kinder is mother to 8 year old Ella, who has Down syndrome. For the past 8 years Dr. Kinder has been on a mission to change the way Down syndrome is viewed and how the medical community responds to it. Right now we have a Petition to request that Medical Students receive a more thorough understanding and training relating to Down syndrome. Down syndrome is found in about 6,000 babies born each year in the US."

Thank you for your support!

Saturday, October 27, 2012

At the Heart of the Game

I probably have already featured the Miracle League one too many times for any reader's liking, but here I am doing it again. Remember at the end of "How the Grinch Stole Christmas" when the narrator says, "the Grinch's small heart grew three sizes..."  That is what it feels like at these games, my heart grows. It is hard to explain, unless you witness it yourself.

There is an overwhelming feeling of love, gentleness and caring at these games. Call me hokey...but do so behind my back and after you have attended a few games and don't feel it yourself.

This week, it started with an early call from a friend whose son is also on one of the teams. She was calling to say that the photographer was fabulous. The professional photographs for team and individual photos were scheduled for this day.

At the field, I witnessed those moments that individually are important, but together, in a short one-hour time frame, they make my heart swell.

They are...

  • The photographer getting emotional after I passed on my friend's compliment to her.

  • The volunteer steering the player to first base as he tried to run in a different direction.

  • The unexpected big hit by the player and the reaction of the crowd.

  • The spectator sitting near me, cheering every child on, no matter what team. He gave them encouragement each time they did not hit the ball. 

  • The photographer taking the extra time with Ben to get an extraordinarily good photo.

  • The last player making her way to home plate, using her walker, taking her time because she has to, and no one getting impatient.

  • Ben's teammate saying goodbye to him.

At this rate, my heart may bust through my chest, but lucky for my readers and me, we only have two more games.

Thursday, October 25, 2012

Thumbs Up to Rugby

Watching Dad play in an alumni rugby match made Ben pretty darn happy. We were there for almost 2 hours, and I did not hear a peep from Ben...just lots of smiles.

Tuesday, October 23, 2012

Resources Galore

Recently, I was sent links to varied types of resources. 
This lead me to do some more research. Here is what I found:

Council for Children's Rights - Wednesday Series in Charlotte, NC

An opportunity for parents, family members, and professionals who advocate for children to ask questions about special education and school discipline.

Take On Sports - Weddington, NC

Take on Sports (fka Challenger Sports) offers athletic opportunities for the special needs youth ages 5 through 22 (or graduation from high school), in Union County, NC. 

 Federation for Children with Special Needs

The Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. We are committed to listening to and learning from families, and encouraging full participation in community life by all people, especially those with disabilities.

Article for Parents of Children with Special Needs

Services In School For Children With Special Needs: What Parents Need To Know

Kids Health - Things explained in terms children can understand

Isn't every kid special? We think so, but what do we mean when we say "kids with special needs"? This means any kid who might need extra help because of a medical, emotional, or learning problem. These kids have special needs because they might need medicine, therapy, or extra help in school — stuff other kids don't typically need or only need once in a while.

Special Education Blog

 Many children are born with special needs. It is important to address the issue as soon as possible. Emerging research indicates that a child with a disability is more likely to be physically or verbally bullied than his typically developing peers. 

Please send other resources to share.

Sunday, October 21, 2012

Miracle League Raffle

One of the moms from Ben's baseball team is running a raffle to raise money for the Miracle League.  Please contact Wendy Batley directly at to work out the details for payment and prizes. Her son, incidentally, is the very talented announcer for the games when he is not playing for the Braves.

Joe Gibbs Racing Pack

Saturday, October 20, 2012

Halloween Costumes for Wheelchairs

2009 TMNT, Superman, Froggy
2010 The Karate Kid Year
2011 - The Star Wars Year

The stress of coming up with costumes for Halloween stresses me out every year. As the kids get older they have more ideas and take more responsibility deciding who they want to be and how to get that certain look. Ben's costumes need to be simple -no masks, hats or anything he can take off and eat.

Before I had a chance to even think about Ben's costume, Logan came up with an idea - Professor Xavier from the X Men. Professor X is in a wheelchair and is one of the most powerful superheroes in the X Men comic book and movie series. He wears a dark suit which is easy enough to find and very Ben friendly. Logan wants to shave Ben's head to finish off the look, but that's not happening!

Many people have mentioned that there are sites for creative Halloween Costumes for wheelchairs - here is one: Halloween Costumes

If you have other sites, please send them to me. Or even better, if you have a photo of your own creative costume for wheelchairs, send that to me. I will post for others to see and copy!

Friday, October 19, 2012

Ben Takes the Bronze

Ben played in our county's Special Olympics Bocce Ball Event yesterday. Lots of athletes, teachers and volunteers were in attendance. The highlight for Ben was having his brother, Logan there. Logan played hooky from school to see Ben participate.

On the way home, Logan made a few observations about kids with special needs - "some are like zombies and some are just normal." He decided that Ben was medium. We also talked about what Logan's friends at school say about Ben. Logan could/would not give me details about their questions, but he said that he answers their questions and then tells them a little about Ben.

I asked Logan if he would ever want to meet with other kids who have brothers and sisters with special needs. Incredulously, Logan said, "Why would I want to do that?" I told him about programs where he could talk about any feelings he may have about having Ben as a brother. His response, "No Mom. I like Ben." I guess that answers it all.

Not having a sibling with special needs, I cannot begin to understand or comprehend what Logan feels, thinks or how he processes his world with Ben. He has been exposed to so much more than I ever was as a child and his emotional awareness is more developed than most kids his age. Any sibling jealousy and anger, love and support is divided evenly between Ben and Sean.

The most disappointing thing of the Bocce Tournament for Logan was Ben taking the Bronze. He was really hoping Ben would at least get the Silver. Basketball and walking events are later this school year - he better start Ben on a training program now.

Thursday, October 18, 2012

Take Me Out of the Ballgame...

No, I did not mistype the title of this post. The jury is not out anymore, I think Ben would rather be a spectator than a player in this sport. When he is in the dugout, he looks longingly at us sitting in the stands. When he is in the outfield, his complaints reach us from across the field. Just three more games and Ben can put in for retirement.

Although, I am not giving up on Ben's athletic career. One friend whose 14 year old son, Ryan, plays baseball on another team is having the time of his life. He made a home run last week and it was all I heard about from Logan. However, there was a time when Ryan played soccer and was so disinterested in the sport. His mom thinks his age has something to do with the change in interest. This gives me hope! Perhaps maturity or a change in sport may help Ben's perspective. We will just have to wait and see.

Tuesday, October 16, 2012

The Allusive Diagnosis

A few months ago, I mentioned that a company called Gene DX was running a Comprehensive Epilepsy Panel on Ben. I was not hopeful that anything definite would come back, but the price was right and a little blood letting was not going to hurt Ben.

The results were interesting, yet, not significant, nor remarkable, definitely not a diagnosis. Basically our letter told us that Ben tested "positive for a mutation on the MECP2 gene which is on the X chromosome. Mutations in this gene result in Rett's Syndrome in females and neurodevelopmental problems and epilepsy in males. However, his mutation is in a location that has not been previously associated with disease. Therefore, significance is unclear."

When we meet with the neurologist, I will get a better idea if there are next steps to take - as in more tests. If they are more invasive or expensive, we will probably just drop it for now. Nothing will change about Ben's therapy and care. I have thought for a long time now that whatever Ben has is Ben's own special syndrome or disorder. It probably occurred sometime at conception or early development in the womb. When you think about how many things have to happen to make a human being perfect (in the typical sense), there are times when something does not go exactly to plan and a "mutation" occurs.

I will take my not-so-little anymore Ben, mutations and all. And I will not hold my breath waiting for a diagnosis.

Monday, October 8, 2012

Putting the FUN in Funding

I remember when I applied for college, everyone talked about all those scholarships and grants available to pay for tuition, room and board. I never found them, but I am sure if internet was available way back then, I may have had a fighting chance.

Here are more sites sent to me for funding communication devices, medical expenses, etc. Some have links to other sites. It will take time to read through guidelines and complete paperwork, but I truly believe that the hard work can pay off. I am currently working on an application to help us pay for Ben's medical insurance. A friend sent me the link and it seems that we may fit the criteria. It is a pain to get all the paperwork together, but if it saves us thousands of dollars, it will be worth it.

Good luck and send us any suggestions and sites that you may know about:

Different Iz Good - Organizations Gifting Apple Devices

itaalk - 5 Steps to Getting an iPad Covered by Insurance: A mom's story of success

itaalk - Grants and Funding Sources

Small Steps in Speech - Small Steps in Speech assists children with speech and language disorders by funding supplemental therapies and treatments for individuals as well as grants to charitable organizations who serve children with communicative disorders. Our goal is to give children the chance to better express themselves in the world in which we live.

Wednesday, October 3, 2012

In the News

After car troubles, technical issues, phone problems (Ben ate my phone) and stomach aches...I am back. Here is a quick story in our local newspaper:

Tuesday, September 25, 2012

Temporarily Toothless

As a parent and a person who prides herself in setting goals, I have looked forward to one of my boys looking oh so cute and adorable with a tooth or two missing. Both Ben and Logan have lost teeth, but the adult ones were already there waiting impatiently for their own place in the limelight.

Finally Ben lost a tooth without another one already there. Goal accomplished! I can sleep easy now.

Sunday, September 23, 2012

Game On

What a difference one week can make. The baseball game was more fun for me, and I am hoping for Ben too. His buddy was a University of North Carolina at Charlotte Baseball Player and he seemed very comfortable with Ben. Ben used his wheelchair and we were able to curtail some of his shenanigans. While in the outfield, Ben spent most of the time trying to get at his Buddy's baseball cap. When Ben was going crazy grabbing at anything around him, I noticed his Buddy give him a quick shoulder rub which seemed to focus him. An OT might have called it deep compression. Whatever it was - it worked to get Ben to turn around and pay attention.

During the week Logan commented that Ben's baseball game was not about winning, but about the players' talents. At 10pm, the night before the game, Sean came rushing into my room with an idea: He just heard a song with the words, "I'm a boy, I'm a boy, I'm proud to be me. I'm a girl, I'm a girl, I'm proud to be me." He wanted the whole baseball crew to sing this song after the game.

I met another Buddy and she told me about her family's farm, Peacehaven Community Farm. It is a place for people with disabilities to live and work. It sounded wonderful and after checking out the website, I hope we can visit soon. (No, Mom, we are not dropping Ben off.)

Because I was not a basket case for this game, I was able to pay attention. I noticed how the coaches guided the players when they needed it and left them alone when they did not. Our coach wanted his players to experience having the ball pitched to them, rather than relying just on the "T". (For the record, the ball is a tennis ball and even a Nerf ball is used in some cases.)  

The best moments were when the players came in from third base to get their run in. Whatever the speed, the crowd erupted in cheers and hooting that would put crowds at some minor and professional games to shame. And when the player did a dance or raised their hands or had the biggest smile on their face as they made their way back to the dugout, I knew all was well at this moment in time, nothing else really mattered, but baseball. 

As we left before the end of the next game, one of our friends pointed out that Ben's teammate was the MC. Sure enough, he was calling out the batting lineup, announcing players and adding his own colorful flavor. He was great and it reminded me of Logan's comment about "this being about people's talents."

The effects of participating in this baseball adventure have been far reaching and completely unexpected. I don't think Ben will have a choice about being in the league - we are in too deep to give up now.

Monday, September 17, 2012

Missed Moments

After Ben's big baseball game on Saturday, we drove to the mountains to pick apples at Sky Top Orchard in Flat Rock, NC. It was one of the most perfect days for it - blue skies, not too hot, not too cool. As soon as Ben was out of the car, he found a seat on the grass overlooking the playground and orchards and enjoyed the view. A few times he moved closer to where kids were playing, but for the most part he was content to sit and watch.

A man who was there with his three grandchildren came and sat right next to Ben in the grass. He asked Ben his name. Ben leaned over to this man, named David, and gave him the most tremendous hug, lasting at least a minute. David's grandchildren walked slowly by, staring, and the man said to them, "When you walk by someone without saying hello, you never know what you might miss out on."

Thanks David for the lesson.

Sunday, September 16, 2012

Baseball - Better as a Spectator Sport?

The Braves go in for a team cheer!

Coach Jeff gives the team a pep talk while Ben eats donuts.

Teammate waiting through a bad pitch!

Ben in the outfield, waiting for a fly ball or a way to escape!

Ben's personal cheering section!

Teammate making it to first base.

Coach Jeff

Ben with his Buddy, Michelle

As always, Logan and Sean woke with their usual question, "What are we doing today?" When I explained it was Saturday and we had Ben's first baseball game, I was not expecting the reaction I received: a hoot for excitement and a plea to make signs supporting Ben.

We arrived at the field and almost every parking space was taken. The place was crowded, decorated with balloons and the music was blaring. I bit my lip because I felt the tears coming. At that exact moment Ryan told me he had goose bumps.

In a crazed 15 minutes, we got Ben's uniform, met Coach Jeff and Ben's buddy, caught up with friends and found our way around the field. All the while, Ben was trying to wander off in his walker and Logan and Sean were throwing questions at us like we are in the batters box. To say that it was stressful, emotional, exciting and a whirlwind of activity would be an understatement.

The game was about to start and Ben was at the dugout with his Buddy, Michelle. Ben spotted me eating a donut and made a beeline for the fence separating us. While the coach went over rules and gave an inspirational speech, Ben ate 2 1/2 donuts through the fence. Covered in sugar, he headed to the outfield for the first inning.

Miracle Field has special rules for these games - each batter gets a hit and goes around the bases. There are no  "outs" and there are (thankfully) only two innings. As each player's name is called, they get up to bat (pitch or t-ball style) and their chosen song is played. These special rules are to make it fun, motivating and easy for everyone to participate.

Ben's song was Bob the Builder's Can We Fix It? With some help, Ben hit the ball off the "T" and walked to first base. Then he proceeded to walk to the dugout. Huh? I got up to find out what was going on and helped his Buddy redirect Ben to the field. By third base, Ben was done. He wanted out of the game, walker and field.

Ben happiest as a Spectator!
Ben benched himself for the remainder of the game, very happy to observe his teammates play. He sat on the bench carefully watching the game. When the coach came over to talk to Ben and blocked his view of the game, Ben put his hand up and gently moved (read as pushed) the coach out of the way.

If I was anxious, emotional and stressed and not even a player with 100 people cheering at me, I cannot imagine how it felt for these players. I am hoping Ben will feel better about the game next week. We are going to try it in his wheelchair, rather than the walker. But since this is about him, we will take our cues from Ben and go from there. If he feels more comfortable watching the game, perhaps an Official Spectator can be a new position on the team.