Wednesday, December 19, 2012

Two Strategies for Creating Time During the Holidays

I love celebrating the holidays and continuing the traditions we are creating as a family:  going to concerts and parties, playing board games, baking, planning gifts, wrapping surprises. Selfishly, I am looking forward to some uninterrupted holiday time for myself too:  to rest or curl up in a quiet corner with a good book, to make crafts, to visit with adults.

Finding that time is a challenge.  My son’s voice and his needs seem to take over the majority of my time:  “Mom, I need help.”  “Mom, can you do this for me?” “When are we leaving?”  “Can I have something to eat?”

This constant reliance on our immediate attention has become our mode of operation.  Perhaps we have attended to our son’s needs too well.  At what point do we pull in the reins and slow down our drive to immediately provide answers and assistance?  If the time is now (and I’m pretty sure it is) how we do it?

My child needs a lot of assistance with everything.  At eight years old, physically disabled and developmentally delayed, how could anyone say no?  It’s hard to even say, “Wait.”  However, he needs to develop these skills (even if that skill is just waiting patiently) and I need more breathing room. 

My Christmas gift to you is to share two strategies that have worked magically for me.  I hope that these golden gifts will give you some breathing room and will teach your child valuable lessons in patience and empathy.

Strategy one:  Stop and Go Signs

Use these signs give a visual reminder of when mom or dad need time to themselves and what is expected of the child.  Children need to understand that there will be times when they are expected to occupy themselves and not interrupt mom and / or dad.

Make a Stop Sign:  draw or print out a picture of a stop sign.  Write the words:  Busy - No demands at this time.

Make a Go Sign:  draw or print out a picture of a green go light.  Write the words:  Good time to ask for help.

  • Present the signs to your child.  Explain what they mean. 
  • Set your child up with toys, a project, books, whatever he can handle independently.  Hang the Stop Sign up (on the refrigerator or a central location) and explain that you are taking 5 or 10 minutes for yourself. 
  • Use your time.
  • Do not allow any interruptions. 
  • Enforce this rule immediately with a negative consequence for any interruption (such as a 15 minute earlier bedtime)
  • After 5 or 10 minutes, hang up the Go Sign and offer assistance as needed. 
  • Gradually increase the amount of time you expect your child to occupy himself.

I knew Evan understood this concept when I told him I needed a little quiet time to finish some work and he asked if he should put up the red Stop Sign.  Mission accomplished.

Strategy two:  The Pass

Use passes to teach the skill of waiting patiently.  The excitement of an upcoming event can be somewhat overwhelming to a child with special needs.  The ability to understand the concept of time is complex and not easily mastered.

Example:  Your child knows that there is a party at the end of the day and keeps asking about it until you go bonkers.  “When are we leaving?  Who will we see?  What will I wear?”  Even though you have answered these questions over and over again, he still asks.

Make two passes (could be one, could be three – whatever works for you).  On a piece of paper write Pass # 1 – you may ask about the ________ (fill in the blank).  If you are going to do multiple passes, number them accordingly.  

  • Give the passes to your child.  
  • Explain that it is now 9 a.m.  Count the hours until the party on your fingers.  Explain how much time it is until the party.  
  • Give all the answers to all the questions about the party.  
  • Say, “These are your two passes to ask about the party again.  I know you are excited, but we have other things we need to do today and we don’t need to keep asking the same questions over and over.  If you really need to ask again, you’ll need to give me a pass.  When they are gone, that’s it.  No more questions.  So use them carefully.”

I knew this strategy worked when Evan started to ask a question about a concert later on in the day and then said, “No, I’m not ready to give you my pass yet.”

Evan is eight and operates at about a 6-year-old developmental level. These strategies work really well for us.  I could have started using them much earlier, had I thought of them!  Perhaps your child is ready for these strategies too.  If so, use them and create a little time and peace for yourself during the holidays and in the year to come.

Happy Holidays and all my best!  Margaret

Wednesday, November 21, 2012

The "It's Done" List

November is National Caregivers Month. I asked readers to share their favorite way they have to care for themselves. Readers who left a comment were entered into a Rafflecopter Giveaway for one copy of UNCOMMON beauty – Crisis Parenting From Day One.

Thanks to everyone who entered - the drawing winner was Julia Potter!

The comments that were left all had to do with exercise. One reader said that joining the local YWCA has been a fun way to get out of the house and the cost of the membership fee provided motivation. Another reader said that taking Zumba classes with a friend was a great pick-me-up. As for myself, I continue to love walking outside. I have an extra incentive to get out for my daily walk now that we have a puppy who comes along.

Over this Thanksgiving Holiday I am going to see how many ways my family can infuse exercise into how we spend our time: fall hikes, a game of Frisbee or soccer, some raking of leaves, swimming, basketball, even some Wii sports. I would love to hear how readers infuse exercise in your holiday.

Finding ways to reduce stress is an essential component in how caregivers care for themselves. As a caregiver, I am learning to recognize that much of my stress is self- imposed. I would like a house that is tidy and welcoming, paperwork neat and organized, meals planned and cooked, laundry clean and put away, homework embraced, interests outside of parenting. All of these goals are good, but there is only so much one person can do.

In our household there is always more to do than I can finish. This fact creates a lot of stress in my life. I feel frustrated leaving things undone. But wait – what if I look at all that I have done.

I think if we added up all that we do in a day we would be amazed.

How about making an “It’s Done!” list instead of a "To Do" list?

Just start somewhere: a pesky pile of paperwork, a load of laundry, dishes. Finish one thing. Then go to a beautiful piece of paper that says “It’s Done!” and write it down. Making the list something you enjoy looking at is an extra bonus – it amplifies all the positive energy you are creating.

Try printing off some free artistically decorated paper from the internet.  

Designs by Sandy is one site I have used that offers a variety of printable designs.

The "It's Done" game is my visual reminder 
that I am making progress, 
accomplishing good things, and getting stuff done. 
No matter how much work is pressing down on me, 
it feels great to see how much I’ve done.  
The momentum has been created, 
I am inspired, and I feel productive.

“It’s Done!”: Fed kids breakfast and gave medicine, emptied dishwasher, walked dog, washed dog, answered e-mail, cleared away one pile of paperwork, cleaned off dining table, helped Evan finish project, went up to school to drop off & pick up homework while Evan is at home sick (all by 10:00 a.m. – still a lot of the day to go!)

Hey – let’s get the kids involved. Jonathan is on vacation today and longing to earn a new toy. He is all for making an “I Did It” list recording all the ways he is responsible: practicing cello, doing homework, washing windows, sweeping floors, cleaning room, walking dog. Of course Evan can’t be left out: finishing school work, organizing books, helping mom clean tables.

I am thankful for all the accomplishments we make together. Let’s celebrate what we have done and for the next few days put away the “need to do” lists and enjoy the holiday. Let’s get some exercise and be thankful for time. Let’s allow ourselves the luxury of putting away self-imposed stress and enjoy where we are right now.

Happy Thanksgiving! 

Saturday, November 3, 2012

Caring for the Caregiver

The National Family Caregiver Association names November National Caregiver's Month.  Throughout the month I will have an ongoing discussion on Marg's Memos about Caring for the Caregiver.  Why is this important?  Where can we find help?  What are the best resources? What are the ways caregivers can care from themselves?

You, the Family Caregivers, are the biggest resources we have to find the answers to these questions.

So, in the spirit of Caring for the Caregiver I am asking you, the Family Caregiver, to enter a give away contest by leaving a short comment sharing one way you care for yourself or one resource that you rely on. 

In return, one of those individuals will be randomly chosen to receive a give away prize - one copy of Uncommon Beauty - Crisis Parenting From Day One.

To get the sharing started, I am leaving a link to the National Family Caregiver's Association page titled, "Tips and Tools".

Perhaps the first step in caring for yourself is to make an announcement to yourself and the world, "I need some time for me."  Then put it on the calendar and make it happen.  And I mean: literally, write it on the calendar - time for me to (fill in the blank).  Find a way to treat yourself to some time to rest and rejuvenate.   I am looking forward to reading about the ways you find and use this time.

Invitation:  Come see Margaret Meder speak in Madison, WI on Thursday, November 8, at 5:30 at the Community Living Alliance.  The event is titled "The Power of The Family Caregiver".  I would love to see you there!  For more information and to make a reservation, call: 242-8335 Ext. 1378.  R.S.V.P. by Monday 11/5.  

**You are welcome to leave your comment on the blog comments below, to share with all readers.  However, to enter the give away, you must follow the Rafflecopter giveaway link above and post your comment there.  Thank you!

Friday, October 26, 2012

The Extreme Parenting Project

Extreme Parenting. What a great way to describe parents of children with special needs and what we do day in and day out. We will go to any and every extreme to give our children what they need. It could mean staying up for 24-hour care giving shifts day after day; traveling to hospital stays, doctor appointments, therapy; carrying out research and making life and death decisions; maintaining endless patience helping our children learn a new skill; accepting that today is not what we might have expected it to be; developing new priorities.

Elizabeth Aquino, writer and mom caring for a special needs child, posed this question:
Knowing what I know now, what might I have told myself on the day of my child’s diagnosis?

She took this idea and developed it into The Extreme Parenting Video Project. This is a video that everyone must see, not just "extreme parents". But for the "extreme parents" who watch it, you are in for a few moments that will inspire you for a long time to come. This beautiful and insightful video will allow you to pause. You will remember that what you do is an adventure beyond anything you might once have imagined and you will know that you are not alone.

I encourage you to take a few minutes (about 3 ½ minutes in length) right now to view it. You will be comforted, soothed, and energized all in one.

What might I have told myself on the day of Evan’s diagnosis?

I imagine the person I am now, eight years later, stepping into the hospital room of the young and bewildered mother I was on the day Evan was born. I might say to myself:

“You can do this and you will do it well. Take one step, and then another. Stop to rest when you need to. You are going to become stronger than you ever imagined. This little boy will be your Ambassador of Joy and he will teach you how precious life really is.”

What would you have said?  I would love to know.  Post your words in a comment below.

Thursday, October 4, 2012

Puppy Love

About a month ago we adopted a puppy.  For the first time in a long time, we had a tiny bit of breathing room.  So we took a big breath and filled that space with a puppy.  This crazy move could mean that we have lost our last shred of common sense.  Or it might mean that we are finding our sense of joyful abandon again.

The newest member to our family is a Boston Terrier named Jasper.  This little guy came into our lives unexpectedly.  Gail, our friend who breeds Boston Terriers, had been nursing along little Jasper (a preemie puppy weighing just 4 ounces at birth).  For years she has shared her terriers as therapy dogs and has helped Evan interact them.  One of the dogs plays ball with Evan.

Gail introduced us to Jasper and told us his story.  It was through her wise, vigilant, and determined care that this little guy is here today.  He is her little miracle puppy.  Holding Jasper is amazing.  His little warm body melts into your arms and makes your heart swell with serenity.  I first held him when I was walking off excess energy before a radio interview in August.  Those five minutes of holding Jasper calmed and centered my mind.  I knew he had special powers that could bring healing to my family.  I’m sure that Gail sensed it too.

We borrowed Jasper for a half-day here and there; then a full day; then an entire weekend.  We fell in love and now he is here to stay.  We wanted the puppy especially for the boys, but he has had an impact on all of us.

To start with, Evan is no longer the youngest member of the family – and Evan knows it.  For now, Jasper has taken over center stage.  Initially Evan was confused as to how we could be lavishing so much attention on the puppy (attention that usually went to him).  There were moments of jealousy and uncertainty.  Now it seems this shift in attention is helping Evan continue his quest to be independent.  He understands that members of the family need to take turns being center stage.  Bringing Jasper into the mix has been the perfect way to put this lesson into action.

Evan is a natural caregiver to his new puppy, having been the recipient of care for so many years.  He lets Jasper out of his crate in the morning; he sits patiently by Jasper (who often needs company while he eats); he is gentle with his petting; he walks Jasper around the yard; he loves to give him reward treats; he is eager to help train Jasper to obey commands (he seems happy to be the one giving directions for a change).

Jonathan finally has a companion dog.  He loves the quiet moments he spends next to the sleeping puppy - that little bundle of warm, soft, loving goodness.  It is the soothing and steady presence for which he has yearned.  There is a part of his heart that desperately needs a pet’s love, unconditional and always there for a moment of stress-free, happy companionship.

The boys are experiencing what we had hoped for.  I am surprised at the impact the puppy has had on Randy and me.  We have found our hearts softening as we play with the puppy.  As parents of a child with special healthcare needs, our hearts have toughened up.  Toughened up in the sense that we have learned how to take hard news without feeling it well up inside of ourselves and break our hearts.  We can’t let emergencies send our bodies into a state of panic.  We can’t let disappointments slow us down.  In some ways, we have become almost stoic. 

Perhaps one of the unexpected effects of this toughening up is that we don’t take in the good stuff completely either.  Part of us is always on guard for a healthcare crisis, which would be all that much harder to bear coming from a happy place.  It seems all our emotions had melded into one mostly neutral, content with where we are, state of being.   Bringing this puppy Jasper into our lives is allowing all of us to let down our guards, soften our hearts, and allow a sweet playfulness, joyful abandon even, back into our lives.  He reminds us of this each day.

Thursday, September 27, 2012

Video Book Trailer Released

Uncommon Beauty - Video Book Trailer

Get a glimpse of what the book Uncommon Beauty - Crisis Parenting From Day One is all about.

The video book trailer was released today!

Follow this link Uncommon Beauty Trailer to view now.

Please consider sharing the video with anyone you think might benefit from this book.

Sunday, August 26, 2012

Are Online MD Websites Worth My Time?

Evan was being especially flirtatious during our recent trip to the grocery store.  One woman said, “He is so darling.  How old is he?”  She seemed very surprised when he answered, “eight.”  His petite build, sweet personality and limited speech skills make him seem more like a five or six-year-old. 

Tuesday, August 14, 2012

Paddling Brings Peace

The rhythm of my paddle is like a lullaby:  sweep, dip, pull, glide.  The gliding feels like a magic spell has been cast upon us - a calm quiet energy that radiates through us.

I can't help but feel that our time in the woods and on the lake is having a powerful healing effect on my family.

Monday, August 6, 2012

Lessons Learned in Summer School

Several months ago, I wrote about signing Evan up for summer school.  Summer school has come and gone and we took away some great revelations. 

Wednesday, July 18, 2012

Sharing Excerpts

My book, UNCOMMON beauty – Crisis Parenting From Day One, is going to the printer this week! To celebrate this final stage of the project, I am sharing some excerpts from the book in this blog entry. 

Friday, July 6, 2012


Our trip last week to Sinsinawa Mound Center, Sinsinawa, WI, was an after thought.  We had taken a day trip to Dubuque, IA and we weren’t ready for our travels to end.  We were close to Sinsinawa so we decided to take the short detour. 

Thursday, June 21, 2012

Eliminating Limitations

Last February Evan brought a paper dove home from school.  It was in honor of Martin Luther King Day.  The students thought about what they dreamed about and wrote it on the dove. 

Wednesday, May 23, 2012

I'm a Winner

The message of the day at Victory Olympics 2012 (May 17th) was "I'm a Winner!"

Wednesday, May 16, 2012

Making Connections Through Challenges

One of the greatest gifts that Evan has brought into our lives is the discovery of deep and meaningful connections with other people also facing healthcare challenges.

Wednesday, May 9, 2012

Let's Go Fly A Kite

Some days take a magical turn. Last Friday was one of those days. The magic started when Evan got off the bus after school and declared, “I want to go to the park”.

Wednesday, May 2, 2012

My Rejuvenation Corner

Last week I was in caregiver mode full force again.  Evan had a cold (coarse cough, runny nose) and ear infection.  For me, this translates into sleepless nights filled with breathing treatments and days filled with catering to his needs at home. 

Tuesday, April 24, 2012

Independence Takes Courage

“It takes courage to grow up and become who you really are.” ~ E.E. Cummings

I might add on: “It takes courage to let your children grow up and become who they really are.”

Tuesday, April 17, 2012

Parent as Caregiver

“There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.” ~Rosalyn Carter.

The thing about being a caregiver is that I never aspired to be one.

Sunday, April 15, 2012

Caregiving with Quiet Strength and Focus

Beyond the normal parenting expectations, my child needs me to be his caregiver.  Learning how to care for his complicated health care needs has been the focus of our journey so far.

Thursday, April 12, 2012

Parents Need Compassion for Children 

and for Themselves

My name is Margaret Meder.  This is my first blog post.  My husband Randy and I are parents to two boys who are two years apart in age.  Our youngest son, Evan, has special health care needs.  He was born in 2004 with a rare craniofacial syndrome called Apert Syndrome, which has affected nearly every bone in Evan’s body.  His head was misshapen at birth, he had hydrocephalus, his fingers and toes were fused, and his spine is curved.  He is hearing impaired and wears glasses with a strong prescription, and almost always  battles respiratory and digestive challenges.  

This picture is from 2005, preparing for Evan's first finger and toe surgery and just days later his first cranial surgery.  This would be the first of many surgeries to come.

The moment Evan was born I was thrown from the role of expectant mom into the role of health care manager and caregiver.  I was completely unprepared for this new role.

Since that moment I have been searching for resources to guide me through my daily challenges.  Along the way I have found some good resources, but most of the time I have felt like a one-woman exploration team finding my own way, alone, through uncharted territory.  Just as an explorer documents each step of her journey, I have been documenting my experiences.  My primary reason for doing this is to make other parents' journeys a bit easier.  Why reinvent the wheel?  If I have an experience or knowledge that someone else could benefit from, I want to share it. 

While health care manager and caregiver are still roles that I carry out daily, I am finding that special needs educator more accurately describes my life these days.  I am searching for ways to assist Evan as he learns how to read, write, and be a cooperative family member.  

           This picture is Evan last summer - getting ready to fish (one of his favorite activities).

What I have discovered is a life that is richer and more meaningful than I ever dreamed possible.

My primary goal with this blog is to share inspirations, affirmations and reflections on parenting children with special needs - especially those children with special health care needs.  

 I see this as a place for parents to find some fresh motivation to keep moving forward with their journeys.  This includes discovering new resources to be health care managers, caregivers and special needs educators.

It also includes remembering to care for and to nurture yourself every day, in order to have the inner resources to keep going. 

“If your compassion does not include yourself, it is incomplete.” 
- from Jack Kornfield’s Buddha’s Little Instruction Book.

I have found inspiration from many sources.  Peace comes in many forms and different ideas can speak to me, depending on my needs.  Followers of the Buddha are masters at meditating on ideas that can bring peace.  Jack Kornfield is an author who has brought me peace on days when I thought there was none to be found.  Follow this link to his Meditation on Compassion.

I look forward to continuing my journey online through this blog.  I also look forward to hearing from you, the readers, the other exploration teams out there forging their own paths.  Please share your inspirations, affirmations and reflections with me.  This is a life worth sharing.