Thursday, February 25, 2010

He Ain't Heavy, He's My Brother

After my post, Brotherly Love, I received an email from a reader who reminded me of this song. I knew the song, but had never really thought about the words and the meaning behind them. I looked it up and thought others might see the lyrics in a new light.
He Ain't Heavy, He's My Brother

The road is long
With many a winding turn
That leads us to who knows where
Who knows when
But I'm strong
Strong enough to carry him
He ain't heavy, he's my brother.

So on we go
His welfare is of my concern
No burden is he to bear
We'll get there
For I know
He would not encumber me

If I'm laden at all
I'm laden with sadness
That everyone's heart
Isn't filled with the gladness
Of love for one another.

It's a long, long road
From which there is no return
While we're on the way to there
Why not share
And the load
Doesn't weigh me down at all
He ain't heavy, he's my brother.

He's my brother
He ain't heavy, he's my brother.
                                     - Rufus Wainwright

* Lyrics taken from this site: ST Lyrics

Wednesday, February 24, 2010

Special Exposure Wednesday: More Brotherly Love

Ben and his almost two year old brother, Sean, share a special bond. For one, they both LOVE mashed peanut butter and banana for any meal and Bob the Builder on the DVD. Ben and Sean have a high tolerance for pain. Sean likes to help Ben out, whether it be with walking, eating, drinking or standing up. Ben tolerates all the help Sean gives without trying to bite, pull hair or push him away; treatment not all people receive. It will be interesting to see how their relationship develops over the next few years.

Tuesday, February 23, 2010

Extra Credit

Over the past few weeks, Ben has had testing, evaluations, IEP (Individual Education Plan) and progress meetings to either determine his developmental level or discuss improvements he has made in a specified time period. I have been thrilled with the progress he has made and the new goals set for him.

The psychological tests I have completed feel strange to answer because so many items do not relate to Ben because he does not talk or have typical physical abilities. The questions do not seem to apply to him. But he needs these tests in order to receive aide, so I complete them and hope for the best.

Testing and evaluating are all part of life - and in truth, I like to have specific documentation outlining goals and progress. But there are other times when Ben has blown me away with things he has done that are not measured on a Lickert scale or answered in a question on a test. Those are the times when I give Ben extra credit.

At 1:30am, Ben woke up for a drink. As I was sitting on one side of his bed and he was on the other, he started to climb over the bed to get back into it. He has one of those fire truck beds and the sides are high, so Ben has to really make an effort to get over the side. How amazing is this kid to be taking the most difficult way to get back in and succeeding. This time last year, he could not have done that. And more importantly, this is the way his brothers get in because it is more fun.

A few weeks ago, we took Ben and Logan to the circus. It is a 2 1/2 hour show - Ben sat on his own through the first two hours with full attention on the show (and popcorn). Last year when he went, his attention was good, but it had definitely improved in the year's time. I was proud of Ben for being able to enjoy the show for that long. His maturity and attention span have grown.

Another huge deal that I have forgotten about is Ben's biting - or now lack of biting. Ben was known as "the biter" - we warned people to be careful around him. I realize now I do not flinch if Ben snuggles next to me, or lays on my shoulder, a favorite place for him to bite. Even Logan introduces Ben without adding the statement, "He bites." 

When you are completing those questionnaires or sitting in an IEP meeting, remember there are other meaningful ways to measure a person's growth and development. And because life is hectic and crazy at times, it so easy to take new skills and behaviors for granted without giving them the extra credit they deserve.

Monday, February 22, 2010

Magic Marker Monday: Singing in the Rain

As soon as I took this out of Ben's book bag, I smiled. I saw Gene Kelly twirling around in this artwork.

Thursday, February 18, 2010

Brotherly Love

While I was reading to Logan, I left Ben and Sean to their own devices. Ben was in the library watching his usual Bob the Builder video and Sean was just hanging out. When I came back about 20 minutes later, I noticed Sean sitting in front of Ben's second bowl of oatmeal and it was almost empty.

I watched as Sean got a spoonful, climbed down from the chair, walked across the hall to Ben and fed the oatmeal to him. He did it two more times until the bowl was empty. He must have been doing it the whole time I was away.

Can't even use words to describe how I feel when I witness this type of understanding, love and caring, especially from such a little guy.
Sean will be two in March.

Wednesday, February 17, 2010

Special Exposure Wednesday: Three Musketeers


On Mondays, my husband is at school well past the boys' bedtime. In order to make those evenings fun (and help me cope), we have "Three Musketeer Mondays" - the boys eat, bathe and then watch a movie before going to bed.

Check out other photos at Special Exposure Wednesday.

Tuesday, February 16, 2010

PR for the ER

Free valet parking, a colorful gown to wear, Bob to the Rescue on the TV, warm towels for the body and drugs to numb the pain - all at the special emergency room for children.

It all started on Saturday morning. As we walked into the gym at the YMCA, Ben abruptly sat down to watch a volleyball match. Not wanting to be late for swim lessons, I hurried a reluctant Ben to the pool. He'd never seen a volleyball match, let alone one played by teenage girls in very short shorts.

Ben had a fantastic swim lesson - the instructor let him maneuver along the edge of the pool alone using his arms to reach the steps, about 5-6 feet away. This was hard work for him and a big accomplishment.

The volleyball match was still underway as we left the pool area with me holding Ben's hands. He led me to the game, let go, plopped down and started crawling quickly to the bleachers. I told him he had 5 minutes to watch.

Ben tried to climb up on a random man's pants to get a better look. I eased Ben down, because clearly the man was not understanding why a child was grabbing his jeans. Ben just wanted the best view and thought a seat on the bleachers was better than the floor!

After being placed down by me, Ben got in a crawl position with hands and knees fully engaged. Then, his right arm gave out and his face hit the gym floor, hard.

No one noticed what happened. I picked Ben up and held him as he whined, Ben does not cry. He clearly was in pain. Then I saw the blood and very briefly the cut on his chin. I knew immediately it was deep enough for stitches.

If you know me, you know I do not do blood. I quickly recruited help to get me a towel, another opinion on the cut and a cell phone to call my husband. Not being able to reach my husband, I got help to the car and drove the 1/2 mile home. Within minutes of telling my husband the problem, we were on our way to the emergency room.

The whole process took one hour. It was amazing - not that I recommend emergency room visits, but if you have to go, do your homework and see which ones cater to kids. It made a big difference in our experience.

So Ben's chin is glued together with Dermabond - I highly recommend it. I had a construction accident years ago, and had my upper lip glued together - but that's another story for another blog...

*Just in case you thought we were driving around in the red sports car above, the image was taken from a website. Our sports car has eight seats, sliding doors and a roof that stays in place.

Monday, February 15, 2010

Magic Marker Monday: Lizard or Gecko?

Ben brought this little guy home from school. His body is laminated and two slits were cut on the bottom for his feet to be attached. We've all fallen in love with this cute lizard, or is it a chameleon?

Thursday, February 11, 2010

Auditory Brainstem Response

Ben awaiting his ABR.

Based on an ABR (Auditory Brainstem Response) Ben had when he was 2 1/2 years old, we were told that his hearing in his right ear was poor - he could not hear anything below 90 decibels. Regular conversation is at 55 decibels. With good hearing in his left ear, he could compensate.

When I found the new ear, nose and throat doctor's office last summer, I decided to retest Ben's hearing. After initial testing, it seemed that Ben's equipment - ear drums, etc. - all worked well. A sound booth test is hard to do with Ben because he is not able to speak or point his answer. Another ABR was the only alternative.

Ben's ABR was done yesterday. In order for the audiologist to perform the test in her office, Ben had to be sleep deprived the night before so that he would quickly fall asleep with a mild sedative.

My plan involved keeping Ben up until 1am and waking him at 6am. My friend and I brought Ben to a 9:30pm showing of Avatar, and kept him awake with popcorn and a 32oz Wild Cherry Slurpie. Not sure if it was the time of night, the task at hand or all the blue people, but it was a long, drawn out experience. Thank goodness my friend was there - I would have given up by 9:35pm.

At 6am, my husband woke Ben up, took him to breakfast, then to the test. I make it sound simple here, but let's just say Ben was none too happy being woken up at that unGodly hour of 6am and let everyone know it.

In the end, Ben was given a clean bill of health - both ears hear fine. Yes, you heard me right - sorry, could not resist!

Wednesday, February 10, 2010

Special Exposure Wednesday: At the Circus

We saw Ringling Brothers, Barnum and Bailey Circus recently.
We are not sure if Ben enjoyed the circus or the popcorn more. Lucky for us, popcorn refills were free!

Tuesday, February 9, 2010

Gadgets & Gizmos - Part 5: PECS

When Ben was three, we started using a Picture Exchange Communication System or PECS. It is a system used widely with children with Autism. Ben has not been diagnosed with Autism, but we still find it quite useful.

PECS is a augmentative and alternative communication device, used by people with special needs. It involves using pictures and symbols to communicate needs and wants. A longer and more in depth definition and history of PECS can be found at this Wikipedia site.

To start, you need a large three-ring binder (about 3 inches wide), rolls of Velcro (more than you expect), hard plastic dividers, access to laminating machine or self-laminating sheets, scissors and camera.

We use the following categories within the PECS book:
  • Food
  • Daily Activities
  • Toys
  • Outdoor Activities
  • Places
  • People
  • Media (DVDs, books, music)
  • Self-Help Activities
The categories help us find the photos fast and return them to their correct location for use the next time. It will also help you to determine what pictures you may need.

Next, make a list of the items to photograph, find in Boardmaker or on the internet. I started with over 75 pictures and have added and deleted people, toys and foods over the years. As you can see, I mostly used real photos because Ben tends to understand them better than cartoon or drawn pictures.

The page below is in the "Food" category:

It is not often that we would allow Ben to see all these choices. Most likely it would be overwhelming for him. Typically we give him 2-3 choices.

This is the "Toy" page:

These are "Self-Help Activities:"

On the back of the book are two Velcro lines for choices. The photos of the two options are placed on the Velcro. Ben chooses which one he is interested in doing next - do a puzzle or read a book.

The front of Ben's PECS book has one Velcro line on it. It is used for letting him know the schedule. We try not to put more than three-four activities on at a time. The schedule below shows him using the potty, eating pancakes for breakfast and then brushing his teeth.

Resources for free pictures:
Beyond Autism PECS
Toy & Grocery PECS
Picture Symbols

We try to get all the therapists to use this form of communication with him. Sometimes we use the actual objects for Ben to make a choice rather than the picture. And then sometimes we get lazy with the whole system. I realize that giving Ben choices throughout his day allows for him to have control over what he is doing, wearing and eating.  Giving him power to choose what he likes makes him a happier individual. Assuming we know what he wants only leads to frustration and aggravation. In the end I know this is what he needs to become a more independent person.

If you need any assistance getting started, I would be happy to answer any questions.

Disclaimer: The equipment and tools I talk about in "Gadgets & Gizmos" is not sponsored by any company. This is not an advertisement for any product.

Monday, February 8, 2010

Magic Marker Monday: A New Look for the American Flag

Ben, age 6, made this creative flag at school. The stars are made with mini-marshmallows. I was able to stop certain members of the family from eating the marshmallows after I told them they were attached with glue.

Thursday, February 4, 2010

Gadgets & Gizmos, Part 4: A Desk Especially for Ben

Several years ago, Ben received a touch screen monitor from an assistive technology organization. Ben found ways to take apart the computer, eat the wires and throw the very light monitor onto the floor. When we tried the programs with Ben, his focus was more on how to eat, taste and destroy the components of the computer, rather than on the actual activity.

After looking for a desk that would serve Ben's needs and not finding one within our budget, I asked my husband's father if he would consider building one. Always up for a construction challenge and helping his grandson, he said yes, without really knowing what he was getting himself into.

We emailed back and forth drawings and designs and finally came up with something we thought would work now and grow with Ben as he got taller.

With the help of his long-time friend and his woodworking workshop, Ben's grandpa built an impressive desk.

The desk features a locked cabinet for storage.

Ben is able to get in and out of the seat easily, but it also makes him work his muscles when sitting. He cannot slouch because there is no back to the chair.

The computer itself is housed inside a locked cabinet. It has ventilation on both sides so that the temperature does not get too hot inside the cabinet. Incidentally, a new computer was paid for by funding through First in Families since the last one was in parts.

The touch screen monitor is locked into place behind a wooden frame. It cannot be removed by any ingenious children, and some very smart adults.

I would be happy to provide any information on how this was built if anyone has an interest in making one for their child. We have happily used it for over one year and are still thrilled by it!

Disclaimer: The equipment and tools I talk about in "Gadgets & Gizmos" is not sponsored by any company. This is not an advertisement for any product.

Wednesday, February 3, 2010

Special Exposure Wednesday: Southern Snow

While it seemed like everyone else in the country was getting snow in December, we remained cold and rainy. This past weekend, the snow finally arrived. With not quite enough snow to bound down hills, Logan glides down the slide - the southern way of sledding.

Tuesday, February 2, 2010

One more thing to add to your fridge

At Christmas I received a card from one of Ryan's cousins. Inside the card was a 4x6" magnet with the title, "101 Ways to Praise A Child." It lists those 101 ways beginning with "Wow" and ending with "I Love You" with 99 more in the middle. In my mind, I thought, "What a wonderful gift to add to your holiday cards." Praise was a very important part of my growing up - my parents were heavy on the praise and I understand the value and impact of the special words parents can share with their children.

Then I read the card. This exact magnet had been on her fridge while her boys were growing up. Now that they were mostly grown, she decided to pass it on to me. Talk about "Wow!"

Let me add that this cousin and I have met just a few times at family reunions and funerals. It has only been through Facebook and this blog that we have developed a relationship. The support from her is wonderful. I feel like I have an extra cheerleader out there sending good thoughts and prayers my way.

The magnet will remain in our house, on the fridge, until our boys are mostly grown. Then I will pass it on to a mom who needs it as much as I do. I hope it will become a family tradition.

Everyday, the magnet has an impact on our family. It serves as a reminder to me to make sure I am praising our children. My husband refers to it to find new ways to praise them. 

Here are all 101 phrases. Feel free to make your own magnet or sign from this:

Wow * Way to go * Super * You're special * Outstanding * Excellent *
Great * Good * Neat * Well done * Remarkable * I knew you could do it *
I'm proud of you * Fantastic * Superstar * Nice work * Looking good *
You're on top of it * Beautiful * Now you're flying * You're catching on *
Now you've got it * You're incredible * Bravo * You're fantastic * Hurray for you *
You're on target * You're on your way * How nice * How smart * Good job *
That's incredible * Hot dog * Dynamite * What a blessing you are * You're unique *
How thoughtful * Good for you * Super work * You're a winner * Remarkable job *
Beautiful work * Spectacular * You're spectacular * You're so courteous *
You're precious * Great discovery * You've discovered the secret *
You figured it out * Fantastic job * Hip, Hip, Hurray * You're so obedient *
Magnificent * Marvelous * Terrific * You're important * Phenomenal *
You showed character * Super work * Creative job * Fantastic job *
Exceptional performance * You're a real trooper * I like you *
You are responsible * Good improvement * You learned it right *
What an imagination * What a good listener * Great idea * You're growing up
You tried hard * You care * Beautiful sharing * Outstanding performance *
You're a good friend * I trust you * You're important *You mean a lot to me *
You showed kindness * You belong * You've got a friend * You make me laugh *
You brighten my day * I respect you * You mean the world to me * That's correct *
You're a joy * You're a treasure * You're wonderful * Good thinking *
Awesome * A+ job * You're A-OK * You made my day * That's the best *
A big hug * Great spirit * I love you!

Monday, February 1, 2010

12 Race Challenge - Update

I asked my good friend to put together an exercise plan for my March race over the Cooper River Bridge in Charleston. It is a 6.2 mile run with a big hill so I want to be sure I can finish and in the time I have set for myself, under 60 minutes. My friend is a former Ironman participant and a triathalon trainer for the local YMCA so she is more than qualified to put something together for me. In fact, it was with hesitation that I asked. I know that whatever she put together would be serious hard work.

Here I sit on the first day of my plan, psyching myself up for me strength exercising and 3-mile run. There's ice and snow on the ground and I must motivate to get to the gym. Yeah, there's no way I'm running outside. I am not hard core. But I will drag my sorry self to the gym...

Magic Marker Monday: Semolina Skeleton

Ben, age 6, came home from school with this wonderful macaroni man made from dry macaroni. My husband and I were curious of Ben's actual participation in the creation of this masterpiece. I had the opportunity to ask the teacher about this pasta person, and she said that Ben had to pick up the noodle from the table and give it to the teacher, then she did the rest. Sounds good to us - Bravo!