Monday, May 31, 2010

Magic Marker Monday: Bring in the Clowns

Logan, age 4 1/2    
Everyone started with a color wheel in art class at school. Then they were told to make something with the color wheel included in the picture. And the brown square on the clown's leg...a cast. The clown has a fake broken leg.

Check out other works of art at

Friday, May 28, 2010

Easy Way to Pay It Forward

I came across this and thought what a wonderful mom to think of this for her son - and such an easy way for someone to give support to this boy.

If you are so inclined, get out your construction paper, glue and crayons and get writing!

Thursday, May 27, 2010

Be the Bridge Rally

I attended the Be the Bridge Rally last Friday. Be the Bridge is a new organization made up of at least 55 city and county agencies that work with people with mental illness, developmental delays or substance abuse issues. The group's mission is to promote awareness and find creative ways for the public to help, especially in times of budget cuts that can have a devastating impact on this group of people.

Not really knowing what to expect at this rally, I was pleasantly surprised by the turnout of people, the excitement of the crowd and the participation from adults with special needs.

Everyone waved their hammers each time a speaker said the word, "bridge."
Attendees made posters and signs to get people's attention
The speakers were motivational, either telling of personal survival or promising support through political and community avenues. The County Commissioner tried a risky move and sang a few lines from a "A Bridge Over Troubled Water." The crowd sang along and a few tears were shed. As the saying goes, 'she was a hard act to follow.'

Many people made creative signs and posters to show support and get the TV and newspaper's camera directed toward them. I also realized that  many of the sign holders were of the population of people this rally was supporting. It was a wonderful way to get them involved in a meaningful way.

Between speakers, well-chosen inspirational songs were played. Sounds hokey, but it really worked with this crowd.
Participants were asked to complete the form above to show their support.

Several people came up to tell their story.

Toward the end of the rally, the planners asked the crowd to do two things:

1. Act - complete the form to the left and turn it in as you leave.

2. March - walk with the entire group to make an impression on the city.

Both were great ideas. It is always good to give people an immediate way to follow-through on promises they make while excited an event. The march was not as well organized and did not have the impact it could have.

The event doubled in size this year and I hope it continues to do so. I did feel that it was a 'preaching to the choir' type of an event. I think it did receive some media coverage, but not enough to create a buzz among people who are unaware of people with mental illness, developmental delays and substance abuse needs. At times, some of the official speakers only addressed "mental illness" and the newspaper articles I read focused on mental illness.

It will take time to build these bridges and increase awareness. I will do my part next year to get a larger group of people there who may not be familiar with the issues discussed at the rally.

Tuesday, May 25, 2010

New Wheels!

A few weeks ago I wrote about  the AMBUCS proposal with the Pepsi Refresh Program. I was asking you to vote for their $50,000 grant to give therapeutic Amtrykes to 100 children with disabilities. In my excitement and enthusiasm, I thought Ben was on that list of 100. He was actually 340th on the list.

This information filtered down to Ben's Aunt Olivia, my sister. As a surprise, she and her family donated the tricycle for Ben. It came last week and the photos are from his first day riding on it. Clearly, he is enjoying himself.

In those first moments as Ben sat on his tryke, I kept imagining the 100 children who were about to receive theirs from the grant through Pepsi Refresh. For the past several months, Ben has been in a baby stroller or Convaid wheelchair for any type of travel or outings. I am sure other parents and families make do with what they can, and it truly is an exciting moment to see your child receive something that will make him more independent, more mobile and help him with gross motor skills at the same time.

This tricycle is truly a very special gift.

If you are interested in finding out more about AMBUCS and Amtryke, please contact them:

Mailing AddressP.O. Box 5127
High Point, NC 27262
Shipping / Physical Address4285 Regency Drive
Greensboro, NC 27410
Phone: 1-800-838-1845
Fax: (336) 852-6830 

Monday, May 24, 2010

Magic Marker Monday: Ants in Your Pants

Ben, Age 6 1/2

With spring all around us, these works of art were a little too close to home for me!

Check out other artists' work at

Thursday, May 20, 2010

Get a Free Children's Book!

Border's is sponsoring Summer Reading Double-Dog Dare. If you are under 12 years old, read 10 books this summer, bring in your list and choose a free book from an assortment of titles.

We have three lists going for our boys - each one will be able to choose a book to add to their collection.

Happy reading!

Wednesday, May 19, 2010

Special Exposure Wednesday: Meet Kingston

This is Ben's 2nd meeting with his new friend, Kingston, a Bernese Mountain Dog. Kingston's owners are neighbors and have agreed to a weekly meeting of petting, kissing and snacking. Ben was intimately involved with all three, luckily this photo shows no proof of spit swapping, otherwise, I would have received a call from Grandma.

When I ask Ben about his new buddy, he gets a big smile on his face. It will be exciting to see how this relationship progresses. Hopefully this will be a first of many photos of these two together.

Tuesday, May 18, 2010

Joni and Friends

Ben had an MRI recently as a follow-up to the seizures he started having in late April. The hospital receptionist started a conversation with me by mentioning that she had a grown daughter with cerebral palsy. She highly recommended the camp Joni and Friends.

She, her daughter and 12 year old son attended the camp last August and plan to go again this year as their family vacation. She said that the activities offered were so wonderful for all of them. If they could use her as a spokesperson, they would certainly attract even more families.

Here's one of the counselor's reaction to working at the Joni and Friends Camp:
About Face Blog

As our children get older we will certainly research a few of the camps they offer for families - Victory Junction is another that offers great opportunities.

I am under the weather this week, so bare with me.

Friday, May 14, 2010

Pay It Forward

Tonight, I had the crazy idea to take the kids out to Applebee's Restaurant and then to our local $2 movie to see The Tooth Fairy.

With three loud (and cute) boys, we get noticed at restaurants. Some people smile, some people say the overused, yet polite saying, "You certainly have your hands full." I am sure there are others who whisper under their breath some choice words.

We were seated in the bar area of the restaurant with tables overlooking us on the next level. I had noticed one table right above us with a small baby, and I was thankful that we were near parents who may understand any noise or commotion from our table.

As we finished our meal, the waiter from the table above us came over and gave us a $20 gift card.  He said it was from a gentleman who had been sitting at the table. We quickly looked around - the table was cleared and no sign of the people. I asked if he had left his name. The waiter just said he wanted you to have this and all he knew was that they were from New York.

My husband later said he had made eye contact with the man at the table. Other than that, no other contact.

Ryan and I were shocked. This had never happened to us before. Heck, I've never had a stranger buy me a drink from across a bar during my single days.

I asked Ryan to run to the parking lot to thank them, but we knew it was too late and it seemed that they wanted to remain anonymous.

I will take my opportunity here to thank these lovely people. Thank you, dear friends, for reaching out to us in your own way. We appreciate the thought, the kindness and the risk you took in carrying out the gesture. It made us as a family feel special.

And I already know how we will pay it forward.

Thursday, May 13, 2010

Nite Runner

Friday night, I ran a 5K through the city of Charlotte. Let me get all my excuses out of the way first. It was unusually hot for an evening run in May (it felt like 90 degrees). I was not prepared for this run having thought it was on May 21. I had a terribly stressful week with MRIs and a long meeting with a neurologist talking about blips, white matter and other stuff I did not understand. So cut me some slack...I was slower than usual and I had to walk a bit.

But I finished.

The highlight, and too bad it was early on in the race, I needed it at the 2 mile marker, was a visually impaired man running the race with a cane. I wanted to say something like "Way to go!" but was unsure if that was an okay thing to do. Within the time it took me to summon up courage, another person said it, and by then the moment for me was lost.

Perhaps because I missed my opportunity with the blind man, I did something uncharacteristic of me - I yelled a "WooHoo" when we were in a long tunnel - one that makes your voice echo. There were lots of kids on this run, and I was surprised that none were doing it - so I did.

Wednesday, May 12, 2010

Special Exposure Wednesday: Hats Off to You!

Ben and Sean sharing a bit of play time - it was not long that Ben allowed the hat on his head.

Check out other photos at:

Tuesday, May 11, 2010

Stumbling Upon Lessons

Ben, Logan and I saw How to Train Your Dragon on Saturday. I went in with little to no expectations. After seeing it, this movie will go on my list of all-time favorites. The music, scenery and characters were superb. The story was a beautiful one. It had two simple messages:
  • Believe in your child.

  • If you've had the same solution for a problem and it has not worked, try something completely different.
I will keep these two lessons close to me as I go through life. They are easy to understand, easy to facilitate and easy to forget in times of stress, lack of sleep and pressure.

And if while reading this, you pictured us sitting three in a row, sharing popcorn and pop, watching the movie in was not quite like that. Ben complained loudly and grabbed at me non-stop in the beginning. After a few seat changes (on my lap, off my lap, next to me, out of his chair, in his chair, laying down, 10th row up, 4th row up) and a sad thought that we may have to leave the theater, I moved Ben about 15 feet away from me, at a diagonal. I could see him out of the corner of my eye. Knowing he could not bug me, Ben decided to watch the movie. I tried not to feel guilty and wonder what other people thought of my decision to seat my disabled child so far away from me.

If I re-frame our movie-going experience and apply the lessons learned from the movie, then it seems I took a creative approach to a common problem we encounter at the movies with Ben. I believed Ben could enjoy the movie so I tried a new way to solve the problem - and it worked! In the end, we all had a great time. Whew - I feel good about that one now :)

Sunday, May 9, 2010

Happy Mother's Day!

My Mom and Me

About 4 or so years ago, my best friend from college and I started a un-traditional tradition for Mother's Day. We eat lunch out and go to a movie - without our children. It is a day for us. We live in the same city, but with differing schedules, we have a hard time pinning down a time to see each other. We always know that on Mother's Day we will have our day.

How do you spend your Mother's Day?

Thursday, May 6, 2010

Re-Post: Therapy Bill of Rights

Ben's private physical therapist attended an intensive three-day workshop presented by Barbara Hypes, physical therapist and author of Heads Up on Hypotonia.  After hearing raving reviews and seeing the results of new techniques used on Ben, I wanted to contact Ms. Hypes myself.  

After exchanging emails and information with me, Barbara looked at this site and added her thoughts to the Bill of Rights list, originally posted on November 24, 2009. With her permission, her additions are listed in blue.

Therapy Bill of Rights 
As a therapist, I will, understand that the most important thing I do is EDUCATE.  In addition, to the best of my ability I will provide the following service during my time with your child:
  1. Arrive on time.
  2. Call if I will be late or unable to make the appointment.
  3. Plan ahead for the session – have a schedule of activities, exercises and games.
  4. Ask questions about what motivates your child and what might upset your child.
  5. Be flexible – a child may not be up to the set plan that day.
  6. Be honest with parents if I think my expertise and skill set may not match the needs of your child.
  7. Speak up if I believe I am just not the right fit for this child for whatever reason.
  8. Never threaten your child with the possibility that you will have to leave if he does not listen or cooperate.  (I feel this is important because I hear therapists make this threat and it is a misdirected form of frustration that needs to be eliminated in my opinion.)
  9. Since home carryover is so critical for each child’s overall success I will work to involve each family in therapy sessions respecting their level of comfort and directing the interaction to promote the best outcomes for their child.
  10. Provide a summary of the outcomes, progress, challenges etc. at the end of each session.  NOTE, time must be provided in the session for this to occur so that I don’t have to be late for the next appointment, miss my break or miss my lunch.  (Therapists don’t consistently communicate a summary of useful information to the family about what happens in therapy.) 
As the parents of this child, we understand that what we do at home during the 23 hours no therapy is occurring is profoundly important.  We will, to our best ability, provide the following during our working relationship:
  1. Arrive on time or be home for the appointment.
  2. Stay at home during the session if it is an in-home appointment or be in the waiting room at the end of the office appointment.
  3. Be honest with our expectations.
  4. Have a room or area ready for the therapy session, if it is at home.
  5. Make sure our child is ready for the session, i.e. eaten, been to the bathroom.
  6. Cancel the appointment if we will not be available. Call if we will be late.
  7. Be honest with the therapist if we feel it is not a good fit for our child for whatever reason.
  8. Be honest if we think that the therapist’s expertise and skill set do not match the needs of the child.
  9. Keep interruptions to a minimum during the session, i.e. siblings, checking in on my child.
  10. If staying in the session is in the best interest of my child’s success, I will assist in therapy to the best of my abilities.  (Even if you are not involved in the therapy session, stay in the area and try to eavesdrop on what is being done to learn how to do some home carryover. Therapy is a time to learn directly from an expert, it is not a time to go shopping.)
  11. Decide the level of involvement I feel I can have during therapy session to allow my child to reach the best outcomes.  (We often feel like we don’t have enough arms to do everything we are trying to do.  Therapists that cover my caseload often comment they have never worked with such informed and involved families.)
  12. Communicate what I can and can’t do to assist.
  13. Provide a quick summary of what might be happening in my child’s world before each session and how that might affect the session.
  14. Not keep secrets about the specialists I am seeing even if I think the therapist might not agree with the approach of that specialist.
  15. Communicate my concerns or frustrations regarding therapy issues.  

Ideally, this would be handed out to both parties, discussed and signed at the first session. I would recommend that a time is set for review – one month for the first time and then every 6 months.

If you have other items for the Therapy Bill of Rights to add, please feel free to send a comment!

Wednesday, May 5, 2010

Special Exposure Wednesday: Special Olympics

Ben at the county-wide Special Olympics with his volunteer 
high school buddies, Melissa and Kevin.

Check out other special photos at

Tuesday, May 4, 2010

Be the Bridge Rally

Here's something to attend if you live in the area, 
or copy the idea for you own region of the world:

“Be the Bridge” Rally
Friday, May 21, 2010
 1:00 – 3:00pm
 Marshall Park, Charlotte, NC

We are a group of service providers, advocates, consumers, family members and community partners who have come together to support individuals with mental illness, developmental disabilities and substance abuse in their own recovery. We believe that everyone has the right to a full, satisfying and meaningful life. Due to major budget cuts in both local and State funding, we believe that now, more than ever, we need to work together as partners in building "bridges" with each other and with natural and community supports and resources. We can no longer rely on Federal, State and/or local funding to carry all the weight of supporting and meeting the needs of those with mental health, developmental disabilities and substance abuse issues. As a greater community, we need to learn to "build bridges" with each other and learn how as a community we can encourage, support, employ and engage those with special needs.

Additionally, the Rally hopes to: 

1) Raise public awareness, 

2) Build community partnerships, 

3) Provide helpful information/literature, 

4) Recruit community businesses and volunteers & show them ways they can help to be supportive as a bridge partner. 

There will be over 35 vendors on site to pass out information regarding services and programs.  A walk will follow around the park following the rally to show unity and support.

Cost: Free to the public.

Contact info: Tim Holland (704-319-7609) or Ellis Fields (704-365-3454)

Monday, May 3, 2010

Magic Marker Monday: Uplifting

Artist: Logan, 4 1/2 years old

Logan's description of his artwork: This is a heart being held up by me and two friends. The two drawings on the side are God and Baby Jesus. I made God look funny.

See other artists' work at

Sunday, May 2, 2010

AMBUCS is a Finalist!

AMBUCS is a finalist in the Pepsi Refresh Grant! 100 children will receive an Amtryke therapeutic tricycle. Thank you for your support in voting for this wonderful cause.