Thursday, April 29, 2010

Suzie's Closet

This week we are considering ordering a new walker for Ben because the one he has is too advanced for him. His school and private physical therapists are concerned that the pressure he is placing on his shoulders will cause serious side effects in the future. Ben also walks in a crouched position using this Kaye walker and his endurance is very low.

The problem is that insurance will only pay for a new walker every three years. The decision made last February was a poor one. I have learned from this mistake - ask questions and get more people involved in the process before ordering an expensive piece of equipment.

In an effort to outline all our options, I spoke with one of the representatives from the company who ordered the walker and she introduced me to an incredible organization:   Suzie's Closet

I think I have mentioned before how amazed I am when parents raising special needs children start an agency or organization, write a book or open a business to help other children and families in similar situations.  Suzie's Closet was started by a nine year-old girl. Suzie found the strength, energy and courage to start this wonderful organization that loans out used equipment like walkers and wheelchairs to kids who need them.

Check it out - the story will warm your heart.

Tuesday, April 27, 2010

April Run

Any race following the Cooper River Bridge Run with all its fanfare, would be a hard act to follow. This Race was supported mainly by the neighborhood in which it is named for, Elizabeth. It was an early morning gathering of almost 700 runners of various ages. The course was very hilly. Personally, I felt it was more challenging than Cooper River because the hills never seemed to end.

The nine year old boy playing the violin in front of his house was the highlight of the race for me. I was proud of him for having the confidence to do it. Other than this boy, it was mostly families on their front stoop quietly watching us run by. A few groups were more lively, but they were drinking an orange liquid in champagne glasses.

With nine minute miles, I came in 17th in my division. Not too shabby, but if I want to bring home a trophy, my best bet is to increase my age. The competition drops significantly.

Monday, April 26, 2010

Magic Marker Monday: Spring Forward

Ben's camp during spring break put together this bulletin board, creating something new to add each day: butterflies, bees, ladybugs and chicks.

See other works of art:

Thursday, April 22, 2010


Ben has been in swim lessons since January. He can "monkey crawl" several feet on the side of the pool without any support, making it to the steps. He can "jump" into the water, going under, and float with some assistance. We are amazed by what he has learned in such a short amount of time because Ben has been in the water since he was a tiny tot, and we were never able to teach him any of these things.

Ben's very special swim instructor, Charquita, moved last week to NY to take a job running an aquatic center. We will miss her gentle ways, her quick understanding of Ben's skills and her belief in Ben's abilities. We are sad to lose her, but at least three other people have jumped in to take her place.

Ben is like a superstar at the Y pool and it seems that it is a privilege to work with him. At one point, I thought a fight might break out, but I quickly stepped in and said that everyone would have to take their turn working with my sweet child.

Okay it didn't happen quite like that, but we do have many people eager to work with Ben. We are excited about his progress and will continue for as long as he seems to get something out of the experience.

Wednesday, April 21, 2010

Special Exposure Wednesday: More Friends

 This is Ben and a friend from the neighborhood watching "Bob the Builder."

Tuesday, April 20, 2010

Our Story

My husband, Ryan, and I met in college in 1991, although we did not date until a few years later. Our first years of marriage were spent renovating an 80 year old home in a precarious "arts district". And when I say renovate, I mean we did all the work and lived in two rooms in the house for five years. We both had full-time jobs too. We had no kitchen or central heat or air conditioning for at least two years. To say the stress of it all was horrendous is not giving you an accurate description. There were some good times, but it was difficult for me to live in carpentry filth, disorganized mess with uncompleted projects for that long. It took counseling to get us through it all. Although I would never put myself in that same position again, renovating the house ourselves allowed me to stay home with our children...which in so many ways turned out to be what we dearly needed when Ben arrived.

Ryan and I were married 5 years when I gave birth to Ben in July of 2003. My pregnancy was normal. It had taken us a few years and some fertility drugs to conceive so I was very happy to be pregnant. I enjoyed most moments of it. I signed us up for every class the hospital offered - from diapering to massaging to Daddy Boot Camp. Ryan willingly participated in my every baby whim.

On the evening of July 29, my water broke. We headed to the hospital, got settled in and everything went fine. I think my father-in-law even visited us during labor - I must have been calm to have visitors. As the night progressed, the nurse came in several times to tell me that I needed to change my position because the baby's heart rate was decreasing. She gave me an oxygen mask to wear and the heart rate appeared normal again.

I feel pain really well. So I am not opposed to any drugs that will help that pain diminish. When the anesthesiologist, whom Ryan called Doogie, gave me the epidural, it did not go great. He yelled at me because I moved and for some reason the pain never really went away. [As an aside, I finally had a great epidural with my third son, so I know what they should feel like.] They gave me lots of drugs to help. I slept for many hours and awoke around 7am - or rather was awoken by this very tough nurse.

When I was finally at the last stage of labor, all was going well. They had to give me a quick lesson on the right pushing position because although I had attended every birthing class, I closed my eyes when they showed the videos of women giving birth. I should mention that I am extremely squeamish. Any sight of blood or just talking about blood or procedures involving blood can make me ill to my stomach.

The rest of this has been told to me by Ryan, because although I was there, I did not see what happened. Ben's head came out with the cord wrapped around his neck. When the doctor tried to loosen it, the cord broke. As soon as the rest of Ben was delivered, they whisked him away. I had asked for a clean baby to hold - remember no blood.

They gave him to me - and me being the person I am, I did not notice that Ben's head was about three times the size it should have been. They had all commented at the birth about his hair - all the red hair. So I just assumed, under that little pink and blue cap was a lot of hair. Hey - I was drugged up and I was in love. So in love with this precious little guy for whom I had waited so long.

At this point, Ryan and the doctor had given each other some looks because of the size of Ben's head. Nothing was mentioned to me.

Ben was brought to the regular nursery. Fairly quickly, the nurses were concerned for Ben's head size and did not feel comfortable keeping him. He was brought to the Neonatal Intensive Care Unit. When I am told, I lose it. I am unable to be consoled and unable to go see him.

Ryan, and this is where Ryan becomes the amazing father that he is today, spends all his time in the NIC unit feeding Ben and caring for him. He was smitten. Ryan brought me reports on how well Ben was doing. When my mom arrived, I visited our little baby. I had a hard time holding myself together.

After 24 hours, Ben was returned to the regular nursery. The swelling of his head was called molding - from being in the birth canal for so long. He was given a clean bill of health and we took it, no questions asked.

Did I mention that Ben did not have a name yet? We did not know ahead of time if we were having a boy or girl so we had lists of names for both. Ben's full name is Bennett Ryan - which the "Ryan" part came to me in the hospital. The "Bennett" is my maternal great-grandmother's maiden name. Ben could have been a Henry, Jeremy or Joshua, but he really looked like a Bennett to me. The woman running the birth certificate office called every hour to get his name from us. It took us three days to decide, but it was worth the wait to get it just right.

We took Ben home and all was well. Since our renovation was as complete as it was going to get for the time being, we took advantage of everything we had missed out on for all those years of construction. Ben went to a baseball game within his first 10 days of life, and within the first few months, he had traveled to county carnivals, festivals and the beach.

Ben was a good eater and had a good disposition. He had terrible nasal problems that may have made it difficult for him to sleep well at night. Ryan was adept at using the blue bulb to clear his nose. He was a good size baby with lots of beautiful red hair.

We were first time parents and had no one to compare Ben to. If we had one of our other children first, we would have known something was not right. We were in love with this baby. Our love was blind to those milestones Ben should have been meeting.

At the pediatrician's office, if our doctor said anything, I did not hear it. I now know that we had many more visits than I had with my other two boys. I think the doctor was seeing if things changed over the first few months. About a year later, I reviewed Ben's medical notes from that period of time and the doctor did mention Ben's low muscle tone.

And looking back, my mom may have asked some questions about Ben's development. Ryan's dad and grandmother may have made a few comments too. Again, we were so focused on our love that we did not hear anything anyone said.

But we both must have been processing information subconsciously, because when we did acknowledge something was wrong, we arrived at this realization at the same time.

When Ben was six months old, Ryan and I were eating dinner together. Ben was sitting in his high chair. For some reason, Ryan asked me if I ever thought Ben was special. And I said yes.

The next day I saw the pediatrician, not Ben's regular doctor, but another one in the practice. After her assessment and review of the notes, she directed us to a neurologist. I will always remember this doctor because I broke down in the little room. She comforted me saying she was a mom and understood how I felt.

That day started our journey into a new world, so different than what we had expected. Would I do it over if I had to? Unequivocally yes.

And I cannot say that about renovating a house.

Monday, April 19, 2010

Magic Marker Monday: Penguins

Artist: Ben, age 6

Made with a painted egg-shaped Styrofoam base, this penguin has felt arms, feet, nose and bow-tie. His googly eyes give him a sophisticated look.

Check out more works of art: 5 Minutes for Special Needs

Sunday, April 18, 2010

Navigating the System

 If you live in the Charlotte area, this is a great event to attend. If you do not live here, it is a great event to copy for your region.

Easter Seals UCP presents symposium on navigating mental health, developmental disabilities and substance abuse services in Mecklenburg County

CHARLOTTE, NC (April 16, 2010) - - Easter Seals UCP (United Cerebral Palsy), a nonprofit serving children and adults with disabilities and mental health challenges, is holding an event to educate the community about various mental health, developmental disabilities and substance abuse programs and services available in Mecklenburg County  and how to navigate and gain access to these services. 

The Mecklenburg County Service Delivery Symposium will be held on Saturday, April 24 from 10:00 a.m. – 2:00 p.m. at University of North Carolina at Charlotte (UNCC) in the College of Health and Human Service building, room 155

Grayce Crockett, Mecklenburg County mental health director, will be the opening speaker and discuss the state of Mecklenburg County.

This symposium is free and will provide people with opportunities to speak with experts in the areas of mental health, developmental disability and substance abuse.  Many service providers will also be on hand to provide information about their specific programs and services.  Breakout sessions will be organized by health-related topics and provide information on how to specifically access these areas of need.

“When you or someone you love is faced with mental health challenges, a developmental disability or substance abuse problems, knowing where to turn, what resources are available, and support you qualify to receive can be a long and arduous process,” said James Campbell, director of the Easter Seals UCP developmental disabilities program.  “We created this symposium to help ease this process and help direct people to resources that can have a tremendous positive impact on their life.”

For more information on the Mecklenburg County Service Delivery Symposium, please call James Campbell at (704) 566-6040 x1237 or visit
About Easter Seals UCP North Carolina
Easter Seals UCP North Carolina is a lifelong partner to families managing disabilities and mental health challenges.  The nonprofit organization provides a multitude of services to adults and children to enhance their quality of life and maximize their potential for engaging in the community.  For more information, visit

Thursday, April 15, 2010

Vote for AMBUCS!

AMBUCS is an organization that offers adapted tricycles for children with disabilities for free. These photos are of Ben on his first Amtryke -delivered in March 2006, when he was three years old.

This tricycle did so many wonderful things for Ben. Sitting upright in the tricycle allowed him to get out of the stroller and see everything he'd been missing. It also required him to use his core muscles, helping to build strength. Ben looked his age by riding, and not sitting in a stroller or being carried. His "cool ride" brought independence to Ben for the first time.

All tricycles are paid through donations from people around the nation. AMBUCS chapters raise money and awareness.

If you are interested in donating, you may view the Wish Lists in two different ways:

Wish List by State

Wish List by Date

Today I received a postcard from AMBUCS asking us to take action. The following words are taken verbatim from the postcard:

was chosen this month to compete for the new Pepsi Refresh grant. If successful, we'll be able to win $50,000 to purchase AmTryke therapeutic tricycles for 100 children with disabilities on our national wish list.

Now here's how you can help us 
accomplish that goal:

Step 1: Visit to register and create user profile. It's free and easy to do.

Step 2:
Cast your vote to "give 100 children with disabilities AmTryke therapeutic tricycles". You may vote for this campaign once a day throughout the month of April.

Step 3: Once you've voted, make sure you let all of your friends, family and co-workers know about this campaign and encourage them to vote every day also.

Ben has outgrown his tricycle and has been on the list to receive a new one since February 24, 2010. If the Pepsi grant is awarded to AMBUCS, Ben may be in the 100 to receive his tricycle!

Please take a few moments to vote. As of right now, AMBUCS is listed #7 in the running and the top 10 get funding - we have a chance if you take action. Thank you!

Ben from this past summer.

CRBR - Got Over It!

 As part of my 12 Month Challenge, I ran the Cooper River Bridge Run on Saturday, March 27, 2010 in Charleston, SC with a good friend. This is my account of the experience.

What a beautiful, fantastic, adrenaline-fused race. I have already contacted AAA about reserving a hotel room for next year. But at 4:30am, when the alarm went off, and even 15 minutes before start time, I swore I would never run this race again. EVER!

 Image by

Then the race began and within seconds, I changed my mind. The excitement of being a part of 38,000+ runners was amazing. Helicopters circled overhead as race participants waved and hooted at them. Music was heard everywhere - from musicians on the side of the road to bands on rooftops.

As we headed toward the top of the bridge, the helicopters still flew above us, but no one was waving back now. We were at a steep incline and all focus was on the goal. When I reached the top, I cheered, as did everyone else. It was cause for celebration - it was a milestone to reach this summit. I tried to look around, over the edge, to see the water and city, but it was hard to take it all in.

After getting off the bridge and turning down a free Krispy Kreme Donut, we ran through a rough part of Charleston without much fanfare. My energy level was beginning to wane. But within minutes, I literally turned the corner into charming downtown Charleston. People (I like to call fans) lined the street. With the cheering and music, running was easy. As the sound from one band faded in the distance, another one took its place.

The 6 mile marker had a race clock attached that read 0:58. My goal was to finish in under 60 minutes. I could do it because my chip time was a few minutes behind the clock. I picked up my pace to a very fast run. I had only .2 miles to go.

Definitely out-of-breath and light-headed, I reached the finish line in 56 minutes. Whew...I did it - I Got Over It!

If you want to see some funny photos from the race, check out David Quick's blog. He is the health editor with the Post and Courier, Charleston's local paper.

And just in case you are inspired to take up jogging or running...
The friend with whom I ran this race sent me an interesting article about running. If you are thinking about starting a jogging program, this article will provide some reasons why it is good for your health: Effects of Running on the Body.

The photo of me running was taken by Island Photography.  The company gave me permission to use the image in this posting. A very special thank you to them!

Wednesday, April 14, 2010

Special Exposure Wednesday: Land Kayaking

Ben insisted on sitting in this kayak in our backyard. I told him 'no' the first time, but that did not stop him. Later I found out that Ben's baby brother sat in it this past weekend. 
Ben just wanted his turn.

See more photos at

Tuesday, April 13, 2010

ABC's of ABA

A few weeks ago I attended a workshop presented by a behavior therapist. As it turned out, I went to a conference on the same topic over a year ago. I will describe what I have taken away from these methods in my own words - but please take a look at the links I have provided below.

After I learned about this, life with children made a lot more sense to me. Not that this is earth shattering material, but it helped me to better understand the hows, whats and whys of behavior in children, and occasionally husbands.

I am in no way an expert in this - just a parent who wants to share a behavior strategy that has worked in our home. I hope to inspire others to explore it further.  Any errors in information comes from me and cannot be blamed on the presenters. Also, you may have seen ABA - Applied Behavior Analysis - connected most often with Autism - please do not let this deter you if your child is not autistic. I use these methods with all my children, none of which are labeled autistic.

Situation - You have picked up your daughter from a full day of school. You have been at work all day. You are both hungry and tired. You have to stop at a grocery store to pick up a few items. As you take a short cut through the cookie isle, your daughter asks politely if she may have a cookie. You say, "No!" She instantly falls on the floor and goes into a full tantrum. After a few threats of timeout, no cookies for life and counting to 3, you open a pack of cookies from the shelf and give her one. She stops crying and you carry on with your grocery shopping.

Antecedent - the event that happens directly before the behavior. In this case, it is your response of, "No!"

Behavior - the tantrum

Consequence - think of this word in a different sense than "punishment." It is what happens directly after the behavior. In this example, the daughter received the cookies. This actually reinforced her tantrum behavior because she gained access to what she wanted.

Consider these points

Setting Event
Other items to consider when analyzing behavior is the environment, meaning were you or your child hungry, tired or having a bad day? Is it cold or hot? Is it a large crowd? Do you feel uncomfortable? Do you feel rushed? The environment may change how a situation plays out.

Reasons for behavior
Access to something, like candy, TV, game, person
Escape from homework, therapy, going to bed
Sensory Input like self-stimulation

Intervention/Prevention Strategies
  1. In this example, if the mom could have foreseen that the child would be hungry, she could have brought a snack for the car. 
  2. The mom may have chosen a different path through the grocery store.
  3. Go to the grocery store another time.
  4. Stop by the produce section, get a banana and let your child eat it. Pay for it with the other groceries.
  5. The child requested the cookies in a polite manner. Not that the mom has to say yes, but she could have explained it more than just saying, "No!" 

FERB - Functional Equivalent Replacement Behavior - Basically replacing the problem behavior with appropriate behavior.
  1. Teach your child to request items with simple signs, pictures, gestures or word approximations.
  2. Teach child to wait.
  3. Teach child to accept no.
  4. Teach negotiation. *Typical children have this skill and often we will work out a deal with our typical child because they have the words. Think about your non-conversational child and how they would negotiate if they had the skills. You can use pictures and signs to help them make a choice. Think about what rewards you can offer in a negotiation - "First you do this, then we can read your favorite book."

Positive Reinforcement
  • When problem behavior is replaced with appropriate behavior, REWARD! REWARD! REWARD!
  • Make sure the reward is desirable. Do not give him a sticker if he does not like them.

Here are a few links that can give more information:
I want to give credit to the presenters of the two workshops I attended:
  • Diane Bannerman Juracek, Ph.D., Senior Administrator, Community Living Opportunities and Amy McCart University of Kansas
  •  Natalia Acosta, BCABA, ABA Therapist with Stepping Stones in Charlotte, NC

And thank you to the Down Syndrome Association of Charlotte for hosting these events.

Monday, April 12, 2010

Magic Marker Monday: Bob the Builder

Ben made this at school using a toilet paper tube as the base and then glued on a crayon-colored cut-out.

See other works of art at: 5 Minutes for Special Needs.

Thursday, April 8, 2010

Curve Ball

Image taken from Tulane University

More than a week ago, my husband noticed that Ben was falling forward. He banged his head badly on one of these occasions. I was away the weekend, but when I came back, Ryan showed me how Ben was drifting forward while sitting in the bathtub. That evening I emailed Ben's teacher to ask her if she had noticed anything.

The next day, Ben's teacher called me to say that, in fact, she noticed Ben falling forward often. She and the assistant thought it could be an ear infection. I was able to get Ben in with a pediatrician that afternoon.

I prayed it would be an ear infection. But life being what it is, of course it was not an ear infection. That would have been too easy. A curve ball was being sent our way.

The pediatrician was a doctor whom we had not seen before. She was serious and focused. Ben's ears were fine, but she persisted with questions and was obviously concerned. While we waited in the office, she called Ben's neurologist who recommended an EEG for Ben the next morning.

In order for the EEG to be effective, Ben had to be kept awake until midnight and awoken at 4am. And if you read this blog regularly, you will know I had a weekend planned with my mom in Washington, DC to celebrate her birthday and I was to leave the day of the EEG. But with the help of my husband, and several other kind people, Ben had the EEG.

While on the road to DC, I called many times to find out the results of the test. I finally was put in touch with the technician, he let me know that everything was okay. Relief flooded over me.

Later, while walking the streets of DC with my mom and sister, admiring the blooming cherry trees, Ryan called me. The doctor had called him with the results of the test. Ben was having seizures every 10 seconds. He was starting medication that evening.

The pit of my stomach felt hollow, almost like being punched and getting the wind knocked out of you. Here I am in downtown DC celebrating my mom's birthday, not having had a weekend away with my mom and sister, ever. I have to admit I was angry for Ryan calling me. Blissful ignorance for a few days would have suited me fine. It took me many hours to realize that Ryan needed me not so much to know what was going on, but to listen. It's his son too, after all. And he'd been up since 4am dealing with reality on his own.

That night, about midnight, I cried. My sister was there to console me. She said all the right things...nothing. She just listened. I called Ryan. Thankfully, he was still up.

I came home on Sunday as planned. I was glad to see Ben all in one piece. Over the weekend, I began picturing him as a fragile boy. This will change as I get used to the idea of seizures and find out more about them. Seizure is a scary word to me, partly because of what it represents, partly because there is so much I do not know. And partly because it just is a scary word.

 Image taken from InventorSpot

I am not so good with curve balls. I like the expected pitch of a fast ball or even a slider. The curve ball requires me to change position, think fast and move even quicker. Tough for me to handle, and it may slow me down, but in the end, I will hit it head on with my own version of a flat swing.


Wednesday, April 7, 2010

Special Exposure Wednesday: Dental Strategies

I admit, this picture is a bit unsettling. Ben has been seeing the same pediatric dentist for 3 years. The office prefers that parents do not go into the exam room with their children - something about children acting up when parents are around. Anyway, I had given them permission to use the papoose three years ago - but had never seen it in action until this day at the dentist's office.

Now I know why Ben gets glowing remarks on how well he behaves for the dentist - poor kid doesn't have a chance!

Tuesday, April 6, 2010

Answered Prayers

I get a report about Ben's progress almost 6 times a week from each of the therapists, after every session. Most of it is mundane information about what they did, how well the session went, how hard Ben worked, how hard Ben worked them, what equipment may need to be fixed, etc.

But today, although the setting was the same and the speech therapist was giving his report as usual - he seemed to be saying something new. Or perhaps I was hearing it differently.

Basically he said, Ben knows his name - he can identify it. There is no need to work on that goal. Well, I knew that from Ben's IEP meeting in January, but it was good to hear from an outside source that this was, in fact, true information. The speech therapist also said that Ben has met the goal to identify articles of clothing (shoes, socks, pants, shirt) from both pictures and actual items. Then he said Ben knows his numbers, 0-9. His next step was to help Ben learn his colors.

The therapist said that when Ben pays attention, he can really show what he knows. Hmmm...we have always said, "That kid has a lot going on in that head of his, if we could only get it out somehow!"

So tonight, my smile is wide, my heart lighter and I think the prayer I said yesterday was answered. I asked God to help Ben a little bit more.

I thank God for bringing us this wonderful therapist who sees the same potential we see in Ben. He is able to be patient, consistent and thorough in his work with our Ben.

Monday, April 5, 2010