Wednesday, November 19, 2014

Pirates of the Parenting World

Last week, Weston and I visited with Dr. George, his primary care physician. Dr. George is an important and supportive figure in our lives. He stands beside us and faithfully weathers many of our unusual family crises.

He is a good friend.

Appointments with Dr George are unusual because we do not talk about healthcare alone. We talk about life and Weston's personal well being.

During this appointment, Dr. George decides to address the typical apathy that often defines the attitude of teenage boys toward their mothers. I have written about it many times on my blog. You may remember Weston's OMG, I can't believe I have such a clueless mother mind set.

But today, Dr. G explains to Weston that he is very fortunate to have me as his mother. He tells him I am a pirate.

Describing me as a sword wielding, pistol slinging hellion of the sea, sailing her ship into uncharted territory, thwarting the efforts of the established regime whose misguided objective is to subdue Weston's fiery spirit.

Weston smiles just a little, picturing his mother in this devilish light. I am a little surprised too by this comparison since I usually see myself as a type of law-abiding and revoltingly accommodating superwoman. But in thinking about this further, I believe Dr. George is right.

I am like all parents of children diagnosed with special needs, I am a pirate of the parenting world.

When you think about it, special needs parenting is not about following the rules, and obeying the laws, it's about breaking them. It's about questioning authority and pushing boundaries, aligning yourself with rebellious others, instilling fear and awakening the imprisoned hearts of a blind and passive public.

It's about commandeering a group of misunderstood misfits through dangerous waters and fighting aggressively to fulfill the selfish needs of these brave and ragged few.

It is a difficult lifestyle filled with danger and adventure, a series of intense battles interspersed with a few welcomed reprieves.

It's about mastering weaponry and finding the fire in your soul to fight bravely to the death.

You care little for what others think and find amusement in the fear you provoke in others.

But there is also an unusual kind of duality associated with being a pirate.

A certain code among thieves.

A need for being as civil as you are savage,

as cooperative as you are querulous

and as disciplined as you are unruly.

You are a master of the mundane and a survivor of storm.

You trust no one.

You sail alone, always adrift, and even among fellow pirates you find few friends. Similar spirited temperaments and accompanying bravado create frequent dispute and deadly skirmishes among pirates.

And yet with these unique few, brilliant seamanship can occur with the precise timing, execution, skill and camaraderie that builds over the many years of serving and sailing together.

But perhaps most importantly, is the indestructible energy force behind all of these dastardly deeds.

The motivating drive behind all acts of piracy and rebellion,

The burning and intense desire to seek a treasure whose worth is immeasurable.

Yo ho, yo ho, it's a pirate's life for me.

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Lisa Peters writes about family life at

Tuesday, November 18, 2014

Dear Santa

My son just e-mailed Santa.

Yes, it's only November.

Yes, my son is 18.

Yes, my son did request a Talking Ben stuffed toy.

Yes, the toy is listed as being for children age 3.




I barely batted an eye this year. There is truth to the belief that practice makes "perfect."

None of us are perfect, but as we practice parenting the children we actually have, as opposed to the children we thought we wanted, wished we had, or are jealous we don't have, we at times reach the "gap" they talk about in meditation. We can get to that place without thought. That place of is-ness. That place of being. That place of alignment.

Eckhart Tolle says, "When you complain, you make yourself a victim. Leave the situation, change the situation, or accept it, all else is madness."

One can hardly leave one's child. One can hardly change one's child. One can only accept one's child.

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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.

Tuesday, November 11, 2014

National Adoption Month

I bet you can guess what subject is near and dear to my heart and my life:).

I know every month has 8 million awareness causes.  November is also national novel writing month (because I know you are dying to know that).  But I am not planning on writing a novel (yet) so let me get back on topic.

If you follow my blog you know I'm adopted.  When I was dating my husband I made a point of telling him I wanted to adopt.  His response, "no problem".  But he wanted to try having our own kids first.

Well the years passed.  So did the miscarriages.  I watched other people around me get pregnant and have families.  It was hard.  So I broached the subject of adoption again.  This time I got the green light.

So I did the research.  I was all ready to hop a plane and fly to a foreign country to get a baby.  But then I looked at the cost.  It was staggering.  My every practical husband suggested that we "adopt local".  So we did.

It wasn't easy.  It took three long years and lots of broken hearts.  Long nights and days of crying. But then Marvin came home to us.
He was 18 months old and had special needs.  But looking at him made those three years worth it.  So very worth it.

So the years passed.  We still felt that our family wasn't complete.  So we went through another couple of years of paper slogging.  And then Cary Lynn came home.
It hasn't been easy.  Choosing to adopt can be a challenge in itself.  Taking a leap of giant faith and adopting two children with massive special needs has added to the challenge.

But it has been an amazing journey.  The bumps in the road have made me a stronger person.  These two little people took my world and turned it upside down.  They are my all and my everything.  My heroes.  They have made me the person I am today.

But right now there is a growing need.  There are over 397,000 children in the US who are living without permanent families.  Out of those 101,666 are legally free for adoption.  But nearly 32% of these children will wait 3 or more years for a mama to bake cookies with them and a daddy who will tuck them in at night.  Every child needs a place to belong.  There is NO such thing as unadoptable.

Children are our hope and future.  Children who age out of the system are more likely to NOT finish school, end up in jail, and even worse repeat the same cycles that they lived through.  That is not OK. They deserve more. Adoption is a powerful way to bring permanence to a child's life and to let them know that they do matter.

So this month whether you choose to celebrate national novel writing month, tree awareness week, world vegan day, or national maintenance week keep in mind that there are so many waiting children who want nothing more than to celebrate these special times with family.

It's not an easy road to take, but it is one of the most incredible journeys and rewarding experiences that you will ever have.  Trust me on this one.

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Amy Fields is a mother, taxi cab driver, and has been know to jump out of phone booths in tights and a cape.  You can follow her at Many Kinds of Families

Saturday, November 1, 2014

How social skills help children with special needs and family caregivers

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One of the key factors for success in life for children with disabilities is having good social skills.  This can affect everything from early childhood to school to adult life. 

What are Social Skills?

          Social Skills are how children interact and communicate with those around them.  This includes their peers as well as adults.  Social skills affect how well children get along at home and school.  They have implications for success in academic life, community living, and employment in adulthood.  In fact, social skills are the largest barrier for successful employment for young adults with disabilities.

          One tool for success in helping children with social challenges is the use of Social Stories.  The stories explain what will happen and prepare the child for the event.  The stories are used repeatedly so that the child knows what to expect.  This allows students to avoid feeling overwhelmed and acting out, so they are more successful.  Sometimes a “social autopsy” will be done with the student after an event that didn’t go well to discuss what went wrong and how to improve next time. 

School Age

          Many students, especially those with developmental disabilities, benefit from Social Skills instruction.  In some cases, a psychologist can work one-to-one with a student until they are ready to work in a group, where it really counts.  Some parents choose to do this privately through their health insurance.  However, Social Skills is a “related service” under the Individuals with Disabilities Education Act (IDEA.)  This means that it can be put into a student’s Individualized Education Program (IEP) and offered during the school day.  Just like other related services such as speech, physical, or occupational therapy, Social Skills instruction should be listed with duration (how many minutes) and frequency (how often each week) and as an individual or group

activity.  Support for developing and enhancing social skills can also be provided in before- and after-school and summer programs if needed. 

Transition to Adult Life

          It is essential that families start early with Social Skills and then enhance these skills during transition.  There are opportunities in school called Structured Learning Experiences or Community Based Instruction.  These offer students an opportunity to practice employment and social skills in a structured environment with support.  The most important component is that this takes place in the community.  Students who participate in these programs are more likely to be successful and independent, which is a plus for families who may no longer have to be caregivers through the lifespan.  Successful transition to adult life will maximize the potential of the individual with special needs so that they can live independently to the best of their ability.


Carol Gray’s Social Stories

Social Skill Autopsies: A Strategy to Promote and Develop Social Competencies

Parent Center Hub:  Social Skills and Academic Achievement

U.S. Department of Education:  Guide to the Individualized Education Program (see section on “additional guidance” which refers to social skills and the law)

Wrightslaw:  Is the school required to provide social skills training?

Helpful Contacts:

Parent Training and Information Centers
PTIs help families with special education, including getting social skills on IEPs.  PTIs can be found at

Centers for Independent Living
CILs maximize skills needed for independent living, including social skills and self-advocacy.   CILs are found at

Remain Hopeful,


Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (, a national network that works to “keep families at the center of children’s healthcare” at or FB  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at or FB