Thursday, June 30, 2011

eSpecially Parents June Edition: Marriage

eSpecially Parents topic this month is marriage. It is not an easy topic for anyone to tackle because it is hard to be completely truthful about what goes on inside your own marriage - it can be uncomfortable and embarrassing to share the ins and outs of your relationship. And really, whose business is it anyway?

Well, I asked the moms of eSpecially Parents to share their marriage stories. Not all jumped to answer and I am sure they have their reasons, but marriage is private. However, I believe we can all learn from one another. Most of us have more in common in our marriages than differences and if we knew what was happening in our own marriage was happening next door, we would feel a bit calmer and normal.

Last week while visiting family in New York, I heard a story of someone who would go on and on about how perfect her marriage was every time her group of friends got together. Everything from sex every night to no arguments, etc. This person kept this story of perfection going for quite awhile. Finally one day she broke down and shared that the image she had created was untrue.

This image of perfection is the one so many people like to portray to the outside world. It takes a lot of energy to do this. Energy that could be used for so many other things.

Many months ago, a friend said something to me about how perfect Ryan and I get along. I looked at her dumbfounded - had we really given that impression? I quickly told her that we were a work in progress. Our first five years of marriage were spent in counseling. Divorce was always just below the surface of every argument. There were endless nights of fighting, crying and threatening ultimatums. Ugh...that was hard to write. Out for the world to see. But it is the truth.

With our 13th wedding anniversary looming in the very near future (hint, hint, Ryan), we are stronger than ever. What did it take to get from that last paragraph to here? Bits and pieces of lots of things - maturity, acceptance of who we married, our house being finished, Ben being born and committing to eachother and our marriage. Today, we like and respect one another. Love is important, but there's more to it than that.

It seems like a lifetime ago when our mariage seemed destined for ruin. And perhaps the experience made us stronger to be parents to Ben, Logan and Sean. Once they were in the picture, we adjusted our focus. A lot seemed to click in to place - the original reasons we fell in love came back to us. And we make a good team - our values and parenting styles are the same. We may go about getting there a different way, but in the end we have the same outcome.


We also go on dates once a week and plan to get away alone three weekends a year. We really look forward to these times. We still argue and annoy each other, but the undertone is never divorce. A fight usually means one of us is tired or hungry. We have learned to recognize this, move on and laugh about it later.

Over the next two weekends, read about the eSpecially Parents' stories about marriage. They say June Edition, but are being posted in July - I will take credit for the tardiness. I am on my summer time schedule, simply called: Chaos.


New to the eSpecially Parents Series? Get caught up here.

Tuesday, June 28, 2011

Pearly Whites


Would you wiggle a tooth in that mouth?
 I know I lost my teeth once too. But when it is happening to your own child, it is a little strange. Ben's dentist told me at the last visit that he has loose teeth. Although curious, I dare not stick my finger in his mouth to check. I like my fingers just as they are, in one piece.

Yesterday, I noticed a tooth growing behind one of Ben's bottom baby teeth. Curiosity got the better of me and I ventured into that shark mouth and sure enough the tooth in front was loose. If Ben were a typical kid, he would be wiggling and playing with it non-stop. Without the extra assistance, it may be awhile before it comes out.

Ryan is very concerned becasue Ben has been grinding his teeth for quite awhile and to hear Ryan talk, they are down to the nubs. I have to say, as dramatic as my husband can be, Ben's teeth are worn down quite a bit. Ryan is worried that Ben will do the same to his adult teeth.

After a telephone call to the dentist, Ryan feels better about the situation  - it is rare to grind teeth down to the gums and it is normal for an adult tooth to come in before the baby tooth has had a chance to fall out.

Whewsh! Yet another roller coaster to board, raise our hands for the camera and scream on the way down! Only to get off looking slightly green and off balance, yet alive and ready for the next one.

Sunday, June 26, 2011

Magic Marker Monday: R2D2

Another one of my sister's fine pieces of culinary art, made especially for Logan's family birthday party in New York.

5 Minutes for Special Needs
Do you have an art project you would like to share with others? Submit to Magic Marker Monday.

Thursday, June 23, 2011

Can't We All Just Get Along


Although advocating can sometimes seem like a never-ending job, you are fighting for the
rights of your child and there is a light at the end of the tunnel. If you are lucky, there are a few lanterns
along the way held by people who will aid you in your journey.


Ben's paperwork to apply for a toileting system has been held up since March. Unfortunately, I did not know it, and I was under the impression that the 3-6 month wait for approval was well underway. When I posed the question to the vendor about when we might expect the toilet, I was told that the paperwork needed was never completed by the therapy company.
Once I got involved and sent emails out to light a fire under a few people, the paperwork was completed and sent in. Later, when I asked what the heck happened, it seems that there was a disagreement between the vendor and therapy company about who should fill out the paperwork. REALLY? Is that what this was about? AND YES I AM YELLING.

Please take a step back and look at what this is all about: a little boy who needs a toilet so he can be safe and independent. After that, nothing else really matters - who completes the paperwork, who should have done it as a courtesy or any other unnecessary bickering is just not important. There really is no place for that when working with children.

My lesson learned: Never assume something has been done by an outside party. Follow-up with everything and everyone and get it all in writing until the process is complete.

Tuesday, June 21, 2011

"I a Big Boy Now"


Sean has had an extrordinary few weeks. He sleeps on the top bunk of Logan and his new bunk beds, he is wearing underwear and using the potty regularly. And with my own regret and excitement, Sean is calling Logan, "Logan" and not "der" for brother. In a matter of weeks, he has changed so much.

Sean does not miss an opportunity to tell anyone that he is a big boy. Strangers, friends and family members are all told that he sleeps "top" and "go potty". His excitement to be seen as a big boy is overwhelming.

Logan made the rule that when Sean reached 20 times using the potty, he would get underwear. That special day came last week, on one of the final days of school. At pickup, Sean ripped down his shorts and announced to Logan that he was wearing underwear while pointing to his bottom which was covered with Lightening McQueen.

Today at the YMCA childcare, Sean used the bathroom there. When he saw their specially designed child-sized toilet, he thought he was too big for it, so he knelt in front if it to use.

So tonight, he gets a special treat - ice cream at the local coffeehouse with his Dad. He's just one step closer to manhood.

Monday, June 20, 2011

Magic Marker Monday: Art Extravaganza



Over the weekend, I cleaned our art closet and realized we needed to have an art day to deplete our overflowing supplies. On the first day of summer break, we invited neighborhood children to join us in making fun arts and crafts.

With several stations throughout the house, children chose what activities they wanted to participate in and did them as often as they wanted. We had everything from necklace making, paper airplane building, puppet designing and clay molding. 

Although Ben does not love arts and crafts, he definitely loved having children over the house. I helped Ben make a noodle necklace and let him eat it when we were finished.

Bracelet made from buttons.
When the arts and crafts were finished, Star Wars became the game. Ben got right in with the kids. It was fun to see him interact with everyone. One little girl whom we have known since she was two, really took an interest in Ben, asking appropriate questions and trying to help Ben get what she thought he wanted.

The summer is off to a good start!

Paperbag puppet




Clay Peacock


Necklace made from a button.


Thursday, June 16, 2011

Introducing "The Shiny Little Pebble"


Jeremy White* just published his first children’s book entitled, The Shiny Little Pebble. Jeremy and his wife, Faith along with their three boys have been friends to our family for several years. I am excited to share his book with you. It was written to give hope to today’s children during hard times - be it moving to a new place, separation or divorce, military life, or the loss of a loved one.

Reading The Shiny Little Pebble with children will open a door for communication, encouraging us to interact and love the children around us. After all, kids experience pain and loss just like we do. With a little bit of humor, quirkiness, and scientific exploration mixed in, The Shiny Little Pebble has the potential to tighten family bonds for a lifetime.

Purchasing is available online at http://www.authorhouse.com/, http://www.amazon.com/, and http://www.barnesandnobles.com/.


  
* A graduate of the University of North Carolina at Charlotte with a Bachelors of Architecture and a Minor in Philosophy, JeremyWhite is quite the rare breed. Enjoying creative qualities along with an appreciation for order and composition, he has excelled in various visual arts, as well as becoming a Registered Architect.
His focus is on making sure that there is thought behind the making....and that the making and the end product are both equally beautiful.

Wednesday, June 15, 2011

Special Exposure Wednesday: Teachers


For the past three years, Ben has been in Mrs. H's classroom. This year he says good bye to her because his school is closing and both are going their separate ways. I am not sure what Ben understands about the change that will occur next year, but I sure do. Even now as I write this, I have tears in my eyes. Mrs. H cares about every one of her students, but has the uncanny ability to make your child feel like the most important one in the classroom.

If ever there was a teacher meant to do what she does, it is Mrs. Hoard. She uses firm discipline combined with a great understanding of the best methods to teach children and then infuses the system with love. We will miss her, but she's already agreed to attend Ben's birthday party in July. This year, though, we will be prepared for Ben's reaction. Last year, he literally gave her a hug that lasted a full 5 minutes and pretty much kncked her to the ground with excitement. If that's not telling of a good teacher, I am not sure what is!

Tuesday, June 14, 2011

You'll Be In My Heart

video

The special education classes at Ben's school performed Phil Collins' You'll Be in My Heart. The words held more meaning because the school is closing and students, teachers and assistants are being displaced to many other schools. There were not many dry eyes by the end.

And if you do notice Ben in the center with the orange shirt, he is crying because he saw me. His reaction was upsetting and shocking, since crying is only reserved for wanting to watch a Bob the Builder video. I guess I should not complain, it appears my status is now on par with Bob.

* Digital effects in place to obscure identities of the children.

You’ll Be In My Heart Lyrics
by Phil Collins
Come stop your crying
It will be all right
Just take my hand
Hold it tight
I will protect you
From all around you
I will be here
Don't you cry
For one so small,
You seem so strong
My arms will hold you
Keep you safe and warm
This bond between us
Can't be broken
I will be here
Don't you cry

'Cause you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more

You'll be in my heart
No matter what they say
You'll be here in my heart, always

Why can't they understand
The way we feel?
They just don't trust
What they can't explain
I know we're different but,
Deep inside us
We're not that different at all
Don't listen to them
'Cause what do they know?
We need each other
To have, to hold
They'll see in time
I know

When destiny calls you
You must be strong
I may not be with you
But you've got to hold on
They'll see in time
I know
We'll show them together
Oh, you'll be in my heart (You'll be here in my heart)
No matter what they say (I'll be with you)

You'll be here in my heart,
I'll be there always
Always

I'll be with you
I'll be there for you always
Always and always
Just look over your shoulder
Just look over your shoulder
Just look over your shoulder

I'll be there always

Monday, June 13, 2011

Magic Marker Monday: X Marks the Spot

Each week this year, Ben's class studied a different letter of the alphabet. When I visited his class last week for the school performance, this artwork was hanging on the wall along with the rest of the" class skeletons."
So cute and creative!


I post artwork every Monday as part of the Magic Marker Monday Series offered through 5 Minutes for Special Needs. Check it out to see more artwork or to post something of your own.


Thursday, June 9, 2011

Desk Model

I think I will start a resume for Ben - he's been in videos about Kindergarten readiness and literacy, and now, he is here modeling a special cut out desk. Who knows who might coming knocking next?


 
Duke Energy ran this story:
Hydro Employee Uses Gift to Craft Furniture for Students

Don Ligon builds desks for special-needs children. If you’ve never worked with special-needs children, it’s something you’ve probably never thought about. It had never crossed Don Ligon’s mind.


But when a friend told him about how special-needs children require special desks and the problem she was having finding them for students in the Charlotte-Mecklenburg school system, he understood. And then Ligon had a light bulb moment. He was already involved with woodworking as a hobby and had made several pieces of furniture over the years. Why not build the desks for the children?

Now, at least once every year, he delivers a batch of solid-oak desks for students. He’s built more than 150 over the last decade.

“What started as a hobby went to a ministry and then a small business,” said Ligon, Hydro Central lead coordinator and 35-year Duke Energy employee. “It’s still a ministry. I didn’t know it at the time, but one of the first desks I made went to a girl in my church who was paralyzed because of a car accident and in a wheelchair.”


What’s so special about these desks and why won’t regular ones do?


Ligon’s friend, the head physical therapist in the school system, explained that special-needs children who have certain medical, physical and emotional conditions often require desks that will stand up to a lot more wear and tear than normal. The desks the school system had been ordering were not holding up well.

“When she explained the situation, it all made sense to me,” Ligon said. “They were spending money on stuff that would tear up.”

That’s unlikely with Ligon’s desks. He fashions them from solid-red oak boards. They’re about two-by-three feet and include features such as foot stools, circular cutouts to accommodate wheelchairs sliding underneath and rounded edges, which are safer for the students.


The desks are so sturdy, they don’t need replacing. The school system will sometimes ask Ligon to refinish the tops, which can become worn over time, but that’s it.


After paying for materials, Ligon makes little money from the endeavor. But then, money was never the point.


His motivation comes from something far deeper.

Tuesday, June 7, 2011

Bye to the Sandman

2011
When you have a child with special needs, progress may be slow. It can also be unexpected, surprising and even downright mind boggling. And if you don't pay attention, it can go unnoticed.

For Memorial Day, we went to the beach. Ben's sand eating is infamous in our household and extended family. I am not exaggerating. As soon as Ben sits in the sand, he begins to double fist sand. I am not joking...just ask Grandma and she will give you an earful. It can be horrifying for some to see the amount of sand he eats. We even warn people who come with us to the beach so they do not freak out on us or Ben.

2009
Well this year, we expected the same. We are always prepared for it, well not prepared as in we want Ben's breakfast, lunch and dinner to be sand, but prepared to tell him no, move his hands away from his mouth and then eventually give up because it is a job we do not succeed at - Ben's hands are faster than ours.

Ben did not eat a grain of sand for the three days we spent at the beach. Not one. He sat in the sand and watched kids play, he followed birds as they flew around him and he crawled around in the sand. We even saw him, kind of, play with the sand.

2009
We did not do anything differently. Although when we mentioned this development to Ben's speech and occupational therapists, they thought that some of the work we all have been doing with oral motor exercises may have something to do with it.


Way to go Ben!

Sunday, June 5, 2011

Magic Marker Monday: Love Letters

For the past several weeks in Sunday School, we have been reviewing the book, A Million Miles in a Thousand Years, by Donald Miller. The book's basic premise is: When you have a chance to talk with God about the story of your life, will you be proud to do so? Will it be an interesting one? How would you change your life so it would be a good conversation with God?

While on his journey to "rewrite" his life story, the author meets many colorful characters along the way - people who have good stories to tell. Most have overcome conflict to achieve their goals. Many have found ways to help others along the way. Today's class was about helping others.

As a way to demonstrate the book's theme, we made Love Letters for children at a local hospital. Love Letters is a program where anyone can make cards and give them to the hospital staff for distribution. The Love Letters website outlines a few simple guidelines to be followed. I made contact with the ChildLife specialist at the hospital and will deliver the letters to her.

We invited the children's Sunday School class to join us. It became an intergenerational community service project opening up people's minds and hearts to one another as well as children who may need a bit of brightening on a scary day.







Saturday, June 4, 2011

Support AMBUCS!

Vivint is giving away $1.25 Million to charities. Help us win!

Looks like another company is jumping on the Pepsi Challenge bandwagon and giving away money to charities. Yes, it is all good, just don't be deceived that these companies are being unselfish. It gives the company publicity in the social networks while appearing like a company with heart, but many charities do benefit. So in the end everyone wins. And this time, they are using the word, "Endorse" instead of "Vote"  - guess it sounds more exciting. But vote is what you are being asked to do.

AMBUCS is in the running this time. They give adaptive tricycles to children with special needs. I have written a lot about AMBUCS because Ben is a two time recipient of one of these devices. We love it, he loves it and the more kids that can have one, the better.

Take a minute to check these sites out and endorse/ vote if you choose:

http://www.ambucs.org/
http://www.vivint.com/givesbackproject/charity/1389

Friday, June 3, 2011

May Edition eSpecially Parents: Elizabeth's Story

Ryan is now 13. I have a teenager in my house – a teenager who is more like a 6 year old. Ok, so are most teenagers, but not all the time. I think this is the hardest part of having a special needs child - for our family right now. But, Ryan makes up for this in so many other ways.

Ryan has Down syndrome. He is very friendly, happy and likes to show off. He is a go with the flow kind of kid 95% of the time. He likes trains (and the subway in DC), Disney movies, red boots, taking walks and annoying his younger sister. He loves going to visit his grandparents who live on a chicken farm! To mention his “granmmmmmommy and grandddaddy" always makes him smile and the fastest way to make him mad is to tell him it is time to leave the farm.


Ryan is a busy young man. He is proficient at the Wii swordplay game and “practices” every morning before school. After school, he attends a church after school program where he plays with peers and does his homework. He is always happy to see me and quick to tell his friends “Seeya laler, bye everybody!”

It is funny to listen to Ryan talk and suddenly understand a word or catch on to what he is talking about. I am sure I have been blessed out plenty of time, but did not know what he was actually saying. Believe me; he can get his point across when he wants to. And, he is the best defense against telemarketers. Ryan loves to answer the phone and will “chat” away with whomever he thinks he is talking to. If you ever call my house and he answers, you can hear me in the background – “Ryan, give me the phone!” and his response “Hushshhh Mom! In a mimumte.”

Ryan has trouble with crowds. Not necessarily crowds of people, but crowded events – the circus, school assemblies, play theaters (but not movie theaters). He becomes very anxious and MUST go to the bathroom, sometimes not quick enough. It can be very frustrating to get tickets to something that I think he would really like (circus) and spend most of the time in a bathroom, trying to get him out of the stall. It took me several years to make the connection between crowded places – especially unfamiliar ones – and Ryan’s toileting accidents. Now, we avoid situations like this as much as possible and I am better prepared (usually) when we are going to be involved in something that might be crowded.

When my husband and I look back over the last 13 years, it is hard to believe this kid had 2 heart surgeries before he was 4 months old, took almost an hour to drink a bottle, had texture issues with food and did not eat solid food until he was 4 and still does not communicate in “emergency” situations (I need help). I do not remember the fear during his surgeries, but experience a new fear every time we “lose” him while out in public (he likes to wander off/ not stop when we do). It is hard to allow Ryan some independence and let him walk ahead because he likes to be first and still rein him in when we want to stop to look at something.

My favorite thing to do with Ryan is to give him a camera (thank goodness for digital) and let him carry it around. When he is done, I like to download the pictures and watch the slideshow. This can sometimes take a while as you go through 200 pictures (taken within 2 hours), but it is very interesting to “see the world through his eyes” – but be aware of all the up close chest, back and dog part pictures. And the funny thing is, no one seems to mind having their picture taken by a special needs child.
“Say Cheese”


 
eSpecially Parents is a monthly series featuring nine moms with amazing stories to tell. To catchup, read more here.

Thursday, June 2, 2011

Whose fault is it anyway?

Sean and I were having an exceptionally difficult afternoon together. Whether it was lack of sleep on his part or bad time of the month for me, we were at each other's throats. It was time to get Logan from school which requires a 1/2 mile walk. Sean refused to get his shoes on. After several attempts, a lot of yelling from both of us, a slap on the hand (his not mine), I told him I was leaving. He ended up putting his own shoes on and following me out of the house. And for those of you wondering, no, I did not have a Plan B if he decided not to follow.

We did not speak the entire walk. As we got closer to Logan's school, I, of course, felt guilty about yelling and slapping Sean's hand. I decided to break the ice, be the bigger person, as they say. Yeah, I know, I am the mom.

So I said, "Sean, I feel badly about fighting with you."

Sean turned to me and ever so sweetly said, "Mommy, it wasn't your fault. It was my fault."

Never underestimate your children, they observe, feel and love in ways we cannot completely comprehend.

Wednesday, June 1, 2011

Special Exposure Wednesday: More Reality TV





All from one evening with Ben. Now couldn't you see this as an exciting reality TV show?