Wednesday, November 22, 2006

Giving Thanks for Children with Special Needs

As we find ourselves again facing that lovely, quiet, humble little American tradition known as Thanksgiving, I now know why I love this day more than most of the noisier celebrations we honor each year. In this complex world in which we live, I love a day that has as its sole purpose the simple act of giving thanks, even as we stuff ourselves into gastric oblivion.

This holiday embraces the old-fashioned idea of being thankful for what we already have. Pausing to give thanks for the abundant blessings already in our lives, no matter how small they may seem at first glance, is an act too often overlooked in today's materialistic world. On Thanksgiving, we are free of witnessing events like those involving crazed adults fighting over overpriced games and toys, at least until the coupon clipping and shopping frenzy begin in earnest. That day-long reprieve alone is a relief and makes me happy to celebrate this gentle day.

Thanksgiving invites us to slow down for a few hours, not a bad idea, especially for those facing the daily challenges of parenting a child with special needs.

I know that it can be tough to uncover the blessings in your children's challenged lives, and in your own, especially when so much of what families hear about disability is negative and focused on a child's perceived shortcomings and apparent brokenness. Depending on where you are in this parenting journey, this day, this year, may or may not seem deserving of your thanks. All the more reason to dig deep and reflect.

This Thanksgiving, take few moments between the turkey and pie and football and family squabbles to really look at your children, to see where their strengths and gifts lie, to honor what your children bring into your life, to see how far you have come on this rocky journey. For one day, put aside your tough role as an advocate and just be your child's mom or dad, sharing hugs and kisses and board games and movies and walks and talks and quiet time together.

Give thanks for your tears.

Give thanks for what you and your child have achieved so far in life, no matter how hard-won or small the gain. Give thanks that we live in a country that is years ahead of many others when it comes to understanding the value and rights of these children. Give thanks for Internet access that has opened up the world for all of us, helping people connect worldwide and access valuable resources, while networking with other families who are also trying hard to juggle it all, just like you. There is comfort in numbers...

On this day, give thanks for the ways in which your child has made you a more responsible parent, a better human being, one who is more tolerant, less judgemental, more patient, and a better child advocate with the ability to multi task on little sleep. Be thankful that your child has taught you that it's okay to ask others for the help you need. Give thanks for your growing recognition that it is our individual differences, and those of our children, that really do make the world go round. Give thanks for all of your children.

Give thanks for the freedom to celebrate your personal faith, and all the ways in which it helps you face, survive, and even celebrate the gifts of each new day of life.

Pausing to reflect on the gifts of special needs, even when you have to search hard for them, can help give you a better handle on your challenges, giving you more energy for the challenges that lay ahead. It balances out the rough moments. Reflecting on your blessings can be a powerful motivator, helping you focus more on what's possible for your child, and on the important role that you play in that child's life success, a positive focus that may help create additional blessings in your life.

Since I try to practice what I preach, here are some blessings from my own life that I will be giving thanks for tomorrow:

-Seeing my book Breakthrough Parenting for Children with Special Needs published and out in the world, where it belongs, thus honoring a big promise I made to my son before his death to help other children with special needs (and their families) live better lives.

-Meeting so many wonderful families at my book signings across the country whose commitment to and love for their children with disabilities has given me great hope for the future of these children, and others still to come. I am grateful for the many blessings you have shared with me this year, including your examples of courage, love, commitment and faith toward your children. These all fuel me on....

-I am grateful that I had the honor of meeting many wonderful people this past year who recognized and supported the value of my work, including: Timothy Shriver, Felecity Huffman, Marlee Matlin, and others. It has been a year of great blessings, amazing moments, heartfelt stories, and my own healing from the loss of my much-loved son.

-I am thankful that Eric's spirit is still strong and very present in my life and in my work, and that my daughter has now successfully taken her place as a responsible young adult in the world, while continuing her three-year relationship with a wonderful, talented and spirited young man!

-Finally, the food choices at the table this time of year are simply the best!

Blessings are everywhere; we just need to take time to slow down, reflect and then honor them. Once you begin searching, the list just seems to grow...and for that balance in my life, I am incredibly grateful.

Happy Thanksgiving to you all!

Wednesday, November 15, 2006

Chicago is My Kind of Town

I'm blogging this from Chicago, one of my all-time favorite cities. This big-city jewel has a intoxicating energy that always leaves me eager to return. If I go too long without a visit to Oprah town, I find myself on edge, the writer in me screaming for a much-needed fix of cosmopolitan inspiration. The captivating blend of great shopping, deep dish pizza, and the sight of the Chicago Tribune Tower always energizes me. I am a reporter at heart.

My son, Eric, also loved this accessible city, which only adds to its charm for me. I still remember the huge grin on his face as he surveyed the giant skyscrapers from his wheelchair for the first time. My son was clearly mesmerized by the sight of it all, much as I was the first time I visited a big city.

Today, those memories remind me of why we placed such a huge focus on the importance of putting leisure time activities, including vacation and travel, back into our lives after our son's birth. While those adventures took careful and thoughtful planning because of Eric's special needs and wheelchair use, they always left us feeling as if our family was no different from any other, if only for a little while. Creating those memories were worth every ounce of effort they required.

On our trips to Chicago, Eric's wheelchair always came in handy. We would load it down with Miracle Mile purchases carefully selected with the help of my fashionista daughter, Jenna, now twenty two and living on her own. My son's solid sense of style closely mirrored his sister's and every selection of apparel was carefully made. Remarkably, this hip brother and sister retail team always agreed on the choices made.

During such outings, the intensity of the special sibling bond and deep, heartfelt connection that I observed always brought me such joy, as do the memories of them now.

On this return trip, I feel Eric's spirit with me strongly as I rewalk those steps alone, savoring the memories of shopping adventures I enjoyed with both of my children by my side...Today, I am both a grieving mother longing for another life adventure with my son, and a proud mama working hard to come to terms with empty nest now that my daughter has successfully claimed her place as an adult in this world. As a parent, I have been twice blessed.

Now I must work to reclaim my sense of self and uncover a new place in the world, one no longer defined by years of daily parenting demands. I am rediscovering who I am as a woman. My new path is proving both unnerving and exhilirating.

As a child, the little gypsy in me dreamed of running off to the big city, especially the literary capital of New York, to claim my fame and fortune penning literary insights that got me noticed. But I traded in that little child's dream and chose instead to raise my family while living in the more predictable, supposedly safer surroundings of surburbia, complete with white picket fencing. My priorities had changed.

Today, my life demands have changed dramatically, leaving me free to travel more easily. It is one blessing of my new, more independent life as an author.

Now I travel as often as I can. Chi town is one city that keeps me returning often with it lure of big city living and my appreciation of Midwestern hospitality and the warmth of its people. And my writing goals today are less ego centered and more focused on helping improve the lives of others.

Fact is, Chicago is a big city with a great small town heart.
All that and Oprah, too.... I'll be back again soon.

Where will your next adventure take you?
Breakthrough Parenting for Children with Special Needs

Saturday, November 11, 2006

Educate Yourself!

While speaking about my book in front of another large group of parents and professionals a couple of weeks ago, I was again reminded of the importance of telling parents the power of these two little words: EDUCATE YOURSELF!

Wherever I go, one or more parents always expresses their frustration over how to get their children the services and resources they need through the Individualized Education Program Team meeting (IEPT). Yet, when I ask if they have educated themselves about the law and their children's rights before going into the meeting many stare at me as if I've lost my mind. Far too many parents think that it is someone else's job to educate them during this exchange, and that professionals will do it with a huge, kind-hearted grin while sharing all the valuable educational goodies in their possession. Wrong.

It is your job to do your homework before you ever set foot in that room. Not knowing the terms of the game leaves your at a great disadvantage, and your child's future at risk. How can you expect to create an effective IEP when you don't understand the terms of that meeting? Not doing your homework keeps you from advocating effectively, and ultimately, hurts your child. No one has as much to gain from preparing well for this meeting as do you and your child.

Navigating the educational system, especially as it relates to the Individualized Education Program Team Meetings (IEPT) is not for the fainthearted. That means you had better be prepared BEFORE you enter that room. If you expect the school to tell you (and generously offer) everything that your child is entitled to (think of it as a gambler showing all their cards in a big stakes poker game), you will be seriously disappointed.

The reality is that school districts are dealing with serious budget concerns that are increasing yearly and they are working overtime to figure out how to balance those huge deficits. These problems aren't going away- and while it is not your responsibility to carry their budget concerns on your back, it does make it even more important that you educate yourself to get your child what they are entitled to by law.

(Note to Professionals: While I respect the big budgetary challenges facing you in today's world, please do not to place the burden of your budget needs on the families who are working hard to get their children the services to which they are entitled by law. Your anger/frustration about this issue is often missplaced. You should be directing your concerns to the governmental/educational agencies and politicians that have placed your districts in this position, and denied you the resources you need to meet the legal/educational rights of these and other children (parents can do this, too). Balancing your district's budget is not the job of the parent. Most already have more than their share of responsiblity on their plates and many are struggling under the weight of it all. It is a demanding role that parents cannot walk away from).

Never forget that knowledge is power. No where is this more evident that in an IEPT meeting. The reality is that parents are their child's best advocate, and that effective advocacy requires that you take time to prepare well for meetings and appointments. If you leave it someone else, your child loses.

Now take a deep breath- and go prepare well. Your actions will make you an Increasingly Empowered Parent (My new definition of the IEP). See the difference?

To help you do your homework, here's one great, family-friendly resource to help you better understand the law as it impacts children with special needs.

You can get a lot more great resources and lots of IEP info/tips in my book Breakthrough Parenting for Children with Special Needs.

You do have my book, right?.

Wednesday, November 01, 2006

I LOVE Little People. Big World.

With the exception of Dancing with the Stars, I admit I've grown a tad weary of whole reality series phenomenon that threatens to fry my brain and steal my hope for the world's future. But then I stumbled acrossed Little People. Big World. on The Learning Channel, and now I'm back on the reality board.

I love this show! I love this family! I love their parenting style and commitment to family. I love their imperfections! And I love the Learning Channel for putting it in our living rooms!

Kudos TLC! The show is informative, entertaining and family friendly (no V Chip needed here!). This show is all about parents working hard to be parents, not their kid's best friends. These parents are real and human, committed to teaching their kids the important stuff like manners, civility and a hard-work ethic, in light of having some extra personal challenges.

Briefly, here's the gist of the program. Two parents, Matt & Amy Roloff, are both short statured, (for more on dwarfism and the current acceptable terminology, check out They are raising 4 children, one of whom, 16-year-old twin Zach, is also short statured. The program follows the daily lives of the family as they work their farm (Roloff Farms) and try to raise all the kids to be the best they can be, while also facing the physical and societal challenges presented them by dwarfism.

Disabilty advocacy never seemed so effortless or more powerful or more fun. The Roloff family will leave you cheering!

These parents spend real quality time with their family for all the right reasons, while educating the rest of us about ability. And that gutsy mom, Amy, is one wise soul with an infectious enthusiasm for life that jumps right out of the television screen right into your living room. My mom hat is off to you, Ms. Roloff! You are one charming woman...

If you haven't yet discovered this family and programming gem, do yourself a favor --tune out the television wasteland choices and tune in to TLC Friday nights at 8 p.m EST. But be warned. The show is addicting. But it's a healthy addiction, and I can almost guarantee that you'll feel better about daily life and redefining disability after spending some time with the Roloff family.

Little People. Big World. is a giant of a family show with great heart. I like knowing what's going on in the lives of this incredible family.

Now I gotta watch the last episode I taped...

Check it out!