Monday, November 30, 2009

Magic Marker Monday: Native American Headdress

On the Wednesday before Thanksgiving, one of the moms in our family group facilitated a story time and craft project with ten children. The book was about the Thanksgiving Holiday. The mom, a former kindergarten teacher, did a great job of getting each child and parent to tell the group what they were thankful for this year. Children, husbands, family, friends, toys and brothers were some of the things mentioned. My four-year-old was thankful for his bones and the whole world.

The group also sang a song, Ten Little Indians. Then they made Native American Headdress with construction paper, markers, glue and feathers. Although Ben helped make the headdress, he was adamant about not wearing it. Logan, his brother, is modeling it in the photo above.

Thursday, November 26, 2009

Chuck E. Cheese, Bob the Builder & Giving Thanks

Ben was invited to a Chuck E. Cheese birthday party last Saturday. He was using his walker to get around. Within the first few minutes, I spotted the Bob the Builder/Scoop Ride and led Ben in that direction.

Let me give you Ben's history with Bob and this ride. Ben is the BIGGEST Bob the Builder fan that has ever lived. He owns just about every movie, piece of clothing, bedding and doll, and has seen "Bob Live" on stage. At the last Chuck E. Cheese party he attended, Ben spent two hours on the ride, and he gave Bob a big kiss at one point. I was not there for that party so I wanted to see Ben's reaction today.

So back again to Chuck E. Cheese. When Ben was about four feet from the ride, he stopped and decided he did not need a walker. He let go and took 2-3 steps on his own before falling and hitting the ride with his head. Let me say it again: Ben took 2-3 steps on his own.

I was behind Ben when it all happened, and I was concentrating on him falling that I really missed the steps. My brain was telling me something great happened, but I was having a hard time processing it all within the very short time frame. And I had no one I knew to ask about what just happened. There were many people around, but all were strangers. As if someone heard my thoughts, one of the strangers who witnessed it said, "He took steps."

I wish I had thought to thank the woman who was there for sharing those moments and words with me. If not for her, I would have brushed off the incident as just a fall. I would have pushed it to the back of my brain because I did not really see it all and could not have made sense of it. If not for the kindness of this woman, it would have been a missed moment. I think she knew that this was something to celebrate.

Happy Thanksgiving!

Wednesday, November 25, 2009

Special Exposure Wednesday

"An Extraordinary Pose"

This may look like a very ordinary photo, but it is not. Ben is standing at the table on his own. Ben is six years old and it has taken him years of hard work, determination and many falls to get to this point. Even we, as his parents, will eventually take this photo for granted and not remember when this was such a struggle for him. But right now, I relish in the fact that he can get up on his own and try to steal a bit of his brother's lunch!

Special Exposure Wednesday is a wonderful way for families to share inspirational photos with others. Each week dozens of sites will post their photos - please check them out.

Tuesday, November 24, 2009

Therapy Bill of Rights

We are so fortunate right now to have a group of therapists working with Ben that are incredible. They are motivated to work with Ben, and they create a fun atmosphere while still challenging him. In turn, Ben is working the hardest he ever has and without many tantrums and poor behavior. For the first time, I am not on the lookout for a new therapist.

The “Dream Team” comes to our house every Wednesday to co-treat speech and occupational therapy. Ben is genuinely excited to see them when they walk through the door. When you take his hands to walk, he leads you to his room for therapy to begin. Using behavior and play therapy, and combining speech and occupational therapy techniques, they have come up with a solid format for each session. They use a token board to reward his work and when it is complete, Ben can watch 2-3 minutes of a video. They have had to be flexible too. One sunny day, Ben did not want to leave the front porch, they changed the plan to an outside therapy session. The Dream Team’s communication with us has been great. They sit with us after each session and review what Ben did and what they thought worked well.

But this wonderful story about the Dream Team is a new tale. It used to be that Ben had a revolving door of therapists. A new one would start and my husband would jokingly say to me, “Do they know they’ll be out of here in a few weeks?”

So I have had a lot of experience with private therapists, both office and home visits. I have had therapists who were consistently late or no-shows, talked about their problems with me, diagnosed Ben with muscular dystrophy (she lasted two weeks), were unprepared, talked on their cell phone outside my front door, were perplexed by Ben, did not see Ben as the cutest most loveable boy ever…So I have seen it all.

When it came to “firing” a therapist or discussing delicate topics like lateness, unpreparedness, etc. as “tough” and “to the point” as I am, I always found those discussions difficult. There seemed to be no ground rules or easy reference point to use. Then I started thinking about a “Bill of Rights.”

Many therapy offices when first getting you signed up with their company give you their rules, regulations and procedures. They usually have a lot to do with payment, missed appointments and confidentiality. The other parts of the working relationship are usually not mentioned. Here is my attempt at a Therapy Bill of Rights:

Therapy Bill of Rights

As a therapist, I will, to my best ability, 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.

As the parents of this child, 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.

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!

Monday, November 23, 2009

Talkin' Turkey

Ben, Age 6

Ben brought these pieces of artwork home on Friday.
I am excited to have Thanksgiving decorations to put around the house! These will be keepers.

Friday, November 20, 2009

Dress for Success

When Ben started school when he was two years old, my mom said, what I thought at the time was, the strangest thing. She said, “Make sure Ben always looks neat and is clean.” Like any daughter might, I thought she was crazy. Why of course Ben will be neat and clean, I would never let him out of the house any other way.

Four years later, I still think about that comment. I make sure that Ben looks his best everyday – his hair is neat, clothes clean. There was a time when I gave Ben a bath every morning before school so his hair looked just right, but I gave that up after son #3 was born. And I realized it was a bit obsessive too. Now I keep his hair short and he gets a bath and a shampoo every night. Ben does have beautiful yet unruly hair.

Our children with special needs may look and act differently, raise eyebrows and get stares. The last thing we want is for their hair to be a mess, clothes dirty or disheveled. I get what my mom was saying - Ben's different, but don't make him any more different than he has to be.

But with all the challenges in our way, dressing and hygiene care seem like more hurdles to stumble over. I would argue that it is a necessary obstacle for parents to overcome for every child, typical or otherwise. Whether we agree with it or not, people are judged by their appearance. A clean, properly dressed child is treated with more respect than one who smells bad or has on dirty clothing.

We have been very fortunate to have had many friends pass down their children’s clothing. Thrift stores, yard sales and consignment shops offer amazing ways to clothe your children. There are also community agencies and church groups that offer free or low cost clothing for families.

I know the time and effort we take to make sure Ben’s outward appearance is clean and neat makes him more approachable, helping pave the way for friendships, mentoring and furthering his growth.

Wednesday, November 18, 2009

I Love Mornings!

My friends and I were saying the other day how easy Carol Brady had it on the TV show “The Brady Bunch.” She had Alice to grocery shop, make the kids lunches, do laundry and housework. If I had an Alice, my mornings would be calm, not the tornado-like, clock-watching, running around, losing-my-mind type that I face every morning.
On Friday as Ben was getting on the bus, I commented to the bus driver that I may have overdressed him because it is hot outside. The bus driver looked at me funny and said that it was very cold out. Then I realized I had run a mini-marathon inside my house digging up shoes, chewies, coats, breakfast dishes, homework and anything else that fell in my path.
With that being said, I do have a routine to help us have good mornings. And to my credit, we have never missed the bus yet, although we have come mighty close. Here are some simple tips I follow for a successful* morning at our house:
• Plan the clothes out the night before. I set everything up so that I am not scrambling in the morning.

• Take baths at night.

• Set the routine for the morning. My middle son who is four years old has a list of 5 things he must do every morning (get dressed, brush teeth, eat breakfast, make bed, put shoes on). The list has words with pictures, since he cannot read yet. If he does all 5 things, he gets a vitamin as a reward.

• Everyday of the week is a special breakfast day – Monday is waffles, Tuesday is Oatmeal, etc. No need to figure out what every one wants or go through a list of available foods each day.

• Mondays and Thursdays are “buy lunch at school” days. Mondays are always hectic and it means one less thing for me to think about in the morning and by Thursday, I may have run out of food.

• I try to get up 30 minutes before the kids so I can get dressed and have breakfast ready. This does not happen often, but when it does, the mornings are calmer.

• I put the shoes in one place every night.

*Successful in my world means that Ben is ready when the bus arrives and Logan gets walked to school on time.

I try to follow the routine, but I am a big believer in doing what you’ve got to do to get through it all. I’ve given candy to pacify, turned the TV on for longer than I should, fed Ben breakfast on the potty to save time, and brought the baby to Logan’s school in his pajamas. After so many years of being inflexible, I can bend like a pretzel.

Tuesday, November 17, 2009

More Lovely Blogs

In October, Bendigo at Bendigo's Rage bestowed The One Lovely Blog Award upon me. It is a wonderful way for blogger's work to be appreciated and at the same time increase readership. At the very least, it makes someone feel very special to be chosen, I know I did.

There are rules to this award:

1. Accept the award;
2. Post it on your blog together with the name of the person who has granted the award,
and his or her blog link;
3. Pass the award on to 15 other blogs that you've newly discovered; and
4. Contact the bloggers to let them know they have been chosen for this award.

Instead of posting all 15 blogs at once, I am listing a few at a time. I said in an earlier posting that I do take this seriously so I have been reading to find what blogs I want to list. I have found a few more.

These blogs were chosen because I found them interesting in content, the writer's background is different (than me) and after going through blog after blog, they made me stop and want to read further. I do not necessarily agree with all the content or opinions, and they are not necessarily all about children or special needs, but I was impressed with what they are trying to accomplish.

I would like to pass this award on to:

Three Ring Circus

Strong Rhetoric

Strong Hands

Happy reading!

Monday, November 16, 2009

Magic Marker Monday

Fall Leaves by Ben, age 6

Magic Marker Monday is a creation through 5 Minutes for Special Needs, a website full of information, blogs and discussion groups. One way to celebrate life is to see it through art, and this site helps us share our children's creative masterpieces. Please check out the site.

Ben used Crayola Twistables Slick Stix - super smooth to create this art work. It is hard for Ben to put pressure on paper, but these crayons are magical. All Ben has to do is touch the paper with the crayon and a large mark is made. I bought them at Target for a reasonable price! I cannot take credit for finding them, Ben's teacher discovered them and I got some for use at home. And as long as I am confessing, he did this artwork at school too.


Saturday, November 14, 2009

Guilt-Free Holidays

I am not talking about sugar-free candy, no calorie cakes or eating your way through the holidays with celery and carrot sticks. I am talking about getting rid of the pressures we all put on ourselves to have wonderful, perfect holidays for our families and children. There are ways to make life simpler during this hectic time. Most of us avoid them because it may mean taking a risk and changing the way things have always been done (and our mother might yell.)

Here are some ideas that have worked for us:

Gifts – I know for our son, Ben, who has little interest in toys, finding presents for him to open during the holidays is a challenge. The little voice in my head keeps saying, “What will Ben open? What will Ben get excited about?” Changing our expectations of Ben being excited about gifts helped quite a bit.

We ask grandparents to pay for tickets to the circus, which unexpectedly has become a tradition. Some of the best gifts for Ben are movie passes and gift cards for ice cream. These gifts become a one-on-one time with Mom or Dad, which can be extra special too.  So we are patient, because Ben's face lights up when he sees the clowns at the circus, enters the parking lot at the movies or sits down in our local ice cream parlor.

Traditions - Create new traditions that work for your situation. Volunteer at a non-profit organization. You would be surprised how your child with special needs can help out, observe or just be a part of the hustle and bustle of holiday activity. Ben loves going places - so we go to McAdenville, a small town that lights up for the holiday season. We go on the "Polar Express" and holiday caroling with neighbors.

Foods – Your child may be on a special diet or allergic to certain foods or you might just have too much going on to cook a three course meal. An occassional holiday dinner delivered to your door in 30 minutes will be very memorable.

Change the Day – Sometimes you or a family member have to work on the exact date of the holiday or family cannot visit until the day after. Change the day – no one will know or care. Or if you have to work and need the extra day for traveling or cooking, change the day. When you look back at the photos, it will be the smiling faces that will matter, not the date on the calendar.

So this year, give yourself permission to do it differently, be imperfect and change it up. The most important thing is that you are with your family even if it is with frozen pizza, curlers in your hair and dirty dishes on the counter.
These are links to some great articles I found about stress, holidays and parenting:

10 Tips to Reduce Stress & Guilt

Take the Holidays in Stride

Enjoying the Holidays with an Autistic Child

Special Needs Siblings Have Special Needs, Too! (this last article is more about siblings of children with special needs. It is really good and I find myself thinking about how we interact at home in terms of this article's advice.)

BTW - This year, we are having a quiet Thanksgiving at home with just the five of us. And I am looking forward to pepperoni pizza for dinner and frozen apple pie for dessert, served on paper plates!

Friday, November 13, 2009

Of Mice and Men

In 2006, three families started a neighborhood club. At that time, our main reason for forming was to setup a babysitting cooperative. I would watch their child one afternoon and then they would repay me the next day or week. The group has since grown to 25 families, a website, guidelines and all types of activities and annual traditions.

Today, school was out so I put out an invitation for parents to come over with their kids to make turkeys using felt, feathers and glue. In the end, the house was full of seven boys and one girl – running around, creating turkeys and watching movies.

Ben was in the mix of all this, although he absolutely refused to make a turkey or watch Peter Pan. He followed the crowd or spent time in his room watching “Bob”, depending on his mood. On three separate occasions, Ben pulled the little girl’s hair. In his defense, she has lovely hair and the first two times, it was within inches of his hands. The last time, she had learned her lesson and sat a distance away with a bed in between. If Ben were not a persistent, determined and sneaky child, she would have been okay. Ben crawled into the bed, over the side and well you can imagine.

I have had my hair pulled by Ben and it hurts a lot. And when you are a sweet two year old girl, just minding her own business, it is frightening to have this very loud, red headed boy, twice your size pull your hair.
After one of these “incidents”, the little girl’s father consoled her. He said, one day you will read “Of Mice and Men” and you will understand.

The comment did not sink in right away. It was more like a bee sting that takes awhile for the poison to get to the blood. It took awhile for the Dad’s words to get to the part of my brain that could fully process their meaning.

And when it did, I was angry, shocked and mortified. I also had to clear cobwebs from my brain to remember exactly what that book was about – I had last read it in high school. And then I was even more upset that my son was being compared to a mentally retarded man who kills another human being. And then I thought, don’t jump to conclusions, perhaps I am wrong and the Dad meant something nice. I have been known to jump to conclusions and do ridiculous things, but I digress.

When Ryan came home I told him the story, and he confirmed my suspicions, that it indeed was not a good comment.

This story actually has a nice ending.

I remembered that another blogger had a recent posting about good and bad comments received by other people and decided I would write about what had happened today. That would at least alleviate some of the ill feelings I was having. I ended my comment with, “I don’t think I will address it with this person because it is not worth the emotional and mental stress.” And I meant it when I wrote it, but as soon as I hit the “post” button, I decided I had to say something if not for me or Ben, but for the Dad's own children who might only learn about people different from them by reading, “Of Mice and Men” or “To Kill a Mockingbird.”

So just a half hour ago, I wrote notes about what I would say to him. I had decided that a phone call would be best because I did not want this to be a public hanging and didn’t want to call a private meeting. And, well we all know how emails can be misconstrued and then forwarded to the world.

I kept my part brief and simple. I used these words and phrases:
  1. Felt the need to address an inappropriate comment.
  2. Acknowledged that the comment was not intended to be mean.
  3. Apologized again for Ben’s actions.
  4. Explained that comparing Ben to “Of Mice and Men” was hurtful.
  5. Offered books that are for children that talk about people with special needs, and one that specifically talks about Ben’s diagnosis.

The Dad’s reaction could not have been kinder, gentler or less defensive. He apologized profusely. He said all the right things, and genuinely seemed to mean them. He gladly accepted my offer of books to read to his girls. He admitted he was at a loss of words when his daughter’s hair was pulled. And he’s not sure how to teach his daughters about kids like Ben.

So this story does have a happy ending. This was my first time addressing a negative comment and having a very positive outcome. I am proud of myself for handling it maturely, carefully and with sensitivity. I am again reminded that the intentions behind people’s comments are not what we may make them out to be. They are typically unsure, even scared about what to say or do in an unfamiliar situation. But aren’t we all?

Wednesday, November 11, 2009

Me, Spontaneous? Never!

Let me start this off by saying that I am the kind of person who will make a “to do” list that will include “Plan something spontaneous.” And I see nothing wrong with that.

I received a call two weeks ago from my son’s case manager. Her supervisor, as part of her graduate school work, started a non-profit organization, called HOPE (Helping Outcomes for Parents with Exceptional children.)

The mission of HOPE is to promote healthy relationships for parents of children with disabilities by providing opportunities to engage in activities within their community. Providing parents with the opportunity to embrace and renew their partnerships to be strong for their children and maintaining the family unit. (Taken from their brochure.)

So the call I was getting was to ask if my husband and I would be willing to go on short notice the next week - Thursday and Friday to Myrtle Beach. I didn’t say, “Hell, YES!” – I am way too polite for that, but you bet your ______, I was thinking it. So Ryan and I drove to Myrtle Beach Thursday morning for a quick trip to the ocean. And did I mention Thursday was my birthday? Things just seem to come together sometimes.

After receiving the call I started looking up what “they” say about parents with a child with special needs. Despite a staggering 80-90% divorce rate, that may or not be true, I found good information. Oddly enough, a few bloggers wrote about marriage this past week too. Here are a few items worth reading:

I think more than anything that made this mini-vacation so great was that it was spontaneous. We never would have planned a trip away from the kids in less than a week’s time. We would have felt guilty taking off from work and asking friends to watch the kids…but because it was “given” to us, everyone jumped in to help make it work.

Marriage for everyone is hard work. Add any special situation, and it intensifies the experience. The communication, unconditional support, respect and friendship all need to be there for a successful relationship. We all have to take the time to develop it and then keep it going with very regular maintenance, which can very happily happen spontaneously! Who knew?





Sunday, November 1, 2009


A few things happened yesterday that amazed me. At our neighborhood Halloween Festival, Ben was taking his usual rest from his walker by plopping down on the ground. His 1½ year old brother came up to him and offered his hands to help Ben get up.

Then Raggs arrived. He is a 7 foot tall dog who has his own show on PBS. Ben watches this show often. When it came to Ben’s turn to give Raggs a hug, he would not let go. I mean he really would not let go. Ben was giving Raggs probably the best hug he has ever received. After peeling Ben away, Raggs kept coming back to Ben for more hugs. Their final farewell was sad to watch, Ben did not want to leave.

I was amazed by the kindness that both Sean and Raggs showed Ben. It started me thinking about how many people helped us get through Ben’s surgery and week of recovery. We had friends who picked up Logan from school, brought us dinner and told us to call if we needed anything. Grandparents offered to help. My sister sent a gift card to Ben’s favorite local ice cream shop. So many people sent prayers and good thoughts through phone calls, emails and Facebook. Kim, our own Wonder Woman, made sure she was available the whole week to help lessen our load.

They might not wear a cape, fly through the air or leap over tall buildings, but they are still Superheroes with powers of extra hands, free time, big-heart generosity and extreme thoughtfulness.

We never felt isolated last week. If we needed anything, we had people all around us who we could call upon. Ben ended up having his own Superhero recovery so it was an easier week than we expected.