Sunday, August 29, 2010

Anniversary Weekend

Anniversaries have been on mind all weekend. I celebrated my 33rd wedding anniversary on Friday, on Saturday, we celebrated the adoption of my two youngest children who joined our family 15 years ago, and now I pause to reflect on Katrina, the devastating hurricane that hit New Orleans five years ago, today.

As I look at each of these anniversaries and seek to connect them all, I realize that we all experience joy, failure, grief and loss and we often reflect on these on anniversaries. As we reflect on our lives, and think back on our joys and pains, let's remember that recovery and readjustment is ongoing. It is never too late, to shift our focus and we are never alone. I believe that we are born to learn and we learn most when we face adversity.

For three more stories of survival, click the survival link.

Going forward, lets look at anniversarys and adversity in a new light. Let us pause, reflect and answer the questions:

What did I have?

What has happened in the interim?

What do I have now?

What did I learn in the process?

Let's focus on the lessons we have learned as we move beyond survival ... Lets focus not only on surviving, but on thriving.

I hope you will pause to reflect, readjust and recover. This is my hope.

What is your hope?

You are Never Alone!

In facing pain, we often shrink within. We see smiling faces, hear laughing voices, and we want to run away and distance ourselves. I can remember a time of great pain in my own life and I remember feeling very much alone. To read my story, go to Believe in a Ray of Hope.

For now, I want to show you how to connect with your heart, your head, and your humanity while avoiding needless suffering. In the video below, Pema Chodron helps you to learn about a simple practice that can help you to transform your pain into compassion. She teaches a simple phrase, that shakes you out of complacency. As of consequence of implementing this practice, our energies are shifted, and we start thinking bigger which benefits not only ourselves but those who are special to us!

May we all open our hearts and minds and remember that "other people feel this." May we all be free of this pain and this sense of isolation! May we always remember to connect with our hearts, our minds, and our humanity. This is my hope.

What are your hopes?

Thursday, August 26, 2010

Special Day of Awareness - A Mother Shares Her Struggle and Triumph

Wow, think about getting the answer to one's prayers, in an email, and first thing in the morning. That's what happened to me!

My eyes opened Wide as I read the following email:


"Mother labored to find reason for son's developmental delays"
By Sandra G. Boodman

Click the link below and read the Washington Post article and then come back because I have more to share about the consequences of not getting an early diagnosis. Do you know anyone else who fits this description?

1 in 500 boys have it and they need your help!

Washington Post Article

For years, we have wanted to get the word out and to let the public know about this condition which often goes undiagnosed and untreated while countless suffer. You can imagine my delight and excitement to see the story of a mother and a son who struggled until they got answers. With the diagnosis, came understanding and appropriate care and services. I identified with that mother and son, because I have lived a similar story.

Our son was diagnosed with 47,XXY when he was 11 years old, after struggling for years in school. His language delays were identified early, followed by reading and writing difficulties which then led to acting out and behavioral problems.

When his teacher told me that he was actually regressing in his reading ability in fourth grade, I decided to have him completely evaluated by the medical community. It was then that I learned that he had an extra X chromosome, 47,XXY – a critical fact that had been repeatedly overlooked by doctors and educators despite our years of searching for the cause of his challenges.

Sadly, our experience is all too common. Over the years, we have gone in many directions looking for help for our son. Even at very good private schools designed for children with learning and emotional disabilities, our son presented more challenges than the staff was equipped to handle. Our struggles and his frustration have been extremely challenging and at times, we were tempted to throw up our hands in despair.

Since getting this diagnosis, he has seen several great doctors and has had some great teachers, but as hard as we have all tried, he never seemed to have access to all of them at the same time. As a result, services for most of his life have been fragmented, his self esteem has suffered, and he still struggles academically. Our son is now 18 and we have finally succeeded in assembling a great support system of school and medical personnel and we consider this to be one of our greatest accomplishments.

Not all young men with XXY are so lucky. Many are still mislabeled, misjudged and left without much needed services. Most are never tested to rule out genetic abnormalities and are simply mislabeled as ADHD, ADD, lazy, or as loners or troublemakers in school (which is incredibly sad because they are often uncommonly sensitive and caring for others when properly diagnosed and treated.)

Many of these boys need specialized educational services and benefit from testosterone supplementation as their bodies generally do not create enough of this hormone, which often leads to fatigue, moodiness, and a lack of focus.

Many doctors and educators are largely unaware of this very common genetic variation and its social implications. Raising awareness of this genetic abnormality in publications such as yours will increase the possibility that these boys will be tested and given appropriate services early on to avoid needless years of struggle and frustration, strengthening these boys to take their rightful place in our society.

It is my hope that with more public awareness, that parents will get the help and support that they need for their sons who often struggle to read, to write and to fit into traditional classrooms. It is my hope that increased awareness of 47,XXY will lead to a recognition of symptoms, testing, proper diagnosis, and attract research dollars and more effective treatment which could mean the difference between success and failure for our boys with an extra X chromosome.

If you know of anyone who fits the description above, please feel free to contact me or the KS&A organization directly. There is much to share and much to learn. Let's do it together!

With higher hopes for tomorrow because of a story shared today,


Friday, August 20, 2010

Connor Doran Flys High as Mom Stands By!

"Children with special needs don't have an illness, so there is no cure and it's not contagious. They want what we all want - to be accepted." My friend, Brenda Nyland Baker had copied these words down after reading them somewhere. She shared the idea with me in honor of Special Needs Week. It had resonated with her and when she shared it with me, it struck a cord, and touched my heart. Brenda and I share many memories and many similar thoughts. Somethings are so good, they must be shared!

Brenda helped me to bring my two youngest children home from an orphanage in Latvia 15 years ago and my life has been enriched beyond measure. While I have been raising my children and looking for answers, Brenda has placed over 1,600 kids into the loving arms of parents who desperately wanted them.

Like me, Brenda knows first-hand what it is like to have a child with special needs and to see that child struggling for acceptance. That child wants acceptance more than anything and it’s a joy to see acceptance in motion. That very idea inspired me to share yet another discovery with you.

Did you watch America's Got Talent last Wednesday night? If you saw the beaming smile of Connor Doran as he was applauded on the stage, your heart must have melted as you saw him enjoy full acceptance.

As I watched his mom enjoy his moment in the spotlight, my eyes filled with tears of joy and recognition. Truly, this is every Mom’s dream… to see her child be recognized and appreciated for his gifts.

We are more alike than we realize and we all have gifts that need recognition and appreciation.

Watch Connor now and see your spirits soar!

Wednesday, August 18, 2010

A Day of Nope Leads to a Ray of Hope

It is better to Believe in a Ray of Hope, than to curse the Day of Nope!

What is a Day of Nope?

It is a day you have heard no, one too many times. It is a day of struggle and disappointment.

How do you cope with the word Nope? Does it mean no, without a doubt? Does it mean no, not a chance? Or does it mean I need to be more creative?

How can I see the word Nope as Hope? How can I change my focus, shift gears and change Nope into Maybe? With a little more thought and Hope, I see Nope as a call to action.

How can I change Nope into Yes? In my struggle, I must figure out a way to learn from my lesson and make it a win/win situation for us all. It sounds like food for thought and a call for not only thought but for action.

As Eleanor Roosevelt said, "It is better to light a candle than to curse the darkness!" How will you turn your no into yes?

How will you turn your Day of Nope into a Day of Hope?

Tuesday, August 17, 2010

Do You Want a Compromised Life?

“If you limit your choices only to what seems possible or reasonable, you disconnect yourself from what you truly want, and all that is left is compromise.” Robert Fritz

Do you want a compromised life? Do you want to simply go through the motions and take what is reasonable?

If not, commit yourself to making your dreams come true and to connecting to what you really want. In making dreams come true, there is no compromise. If you know what you want, you are well on your way to manifesting your desire.

Now make room for the manifestation of that desire! Start by saying NO to activities that no longer excite you. Focus on what that desire means to you and why you want tomorrow to be different. Free up time to do those things that make your heart sing! Make time for reflection and be ready to take action tomorrow and everyday to make your dreams come true.

Starting tonight,

1. Review your day and reflect on how you want to make tomorrow different.
2. Jot down 3 things you want to do tomorrow to move toward your dream.
3. Do these 3 things tomorrow, no excuses, no compromises!

Tomorrow night, repeat the process above and say, I am committed, I am worthy, my dreams count and I deserve it. Do this for two weeks and let me know how far you get. I believe you will be well on your way to loving life and I look forward to hearing from you!

Monday, August 16, 2010

After the Disbelief, Frustration and Anger....You face Isolation or Another Choice!

In parenting a child with a disability you face a major choice.

You can choose to adopt limiting beliefs and believe that your child's condition is the death of your dreams...


You can choose to adopt empowering beliefs and believe that your child's condition requires bigger and grander dreams...

Your Choice!

Based on personal experience, I know that parents, like me, who chose to let their dreams die based on their limiting beliefs, often become frustrated, angry and ultimately isolated. Not only were my dreams drifting away, but my life lacked lustre.

After many frustrating uphill battles and many bitter disappointments, I realized that I was not winning the war I was fighting and my child was not benefitting from my efforts. We were both, slowly sinking into an even greater hole.

It was at this point, that I decided to make another choice. I decided to switch gears and joined the group of Parents who chose to dream bigger. Sure, I faced bigger challenges and sometimes, I just cried! When I hit bottom, I confronted my values and my commitment was renewed.

Over time, I grew stronger, more confident and more connected. With greater trust in myself and others, and a focus on win-win, I found myself more willing to share my experience and to reach out to others who may find themselves frustrated, angry and isolated.

Today, my mission is to give voice to the unspoken dreams.

Will you join me on Facebook in the support group for parents and educators? Together, we can combat isolation and give voice to those unspoken dreams.

Go to: Believe in a Ray of Hope on Facebook and add your voice and support to the dreams of parents and educators everywhere. Tell others about the hope and encouragement that waits for them!

Sunday, August 15, 2010

Our Actions Cause Reactions!

Did you ever notice how powerful our choices are? Our choices and resulting actions bring forth reactions. Cheryl Richardson reminds me in her wisdom cards, that I need to make my choices wisely!

There is only so much time in the day...only so much time on the weekends... How do I want to spend my time? While choosing to write this blog post, am I freeing myself or tying myself down? What goes undone? What must I do first to ensure my day works the way I want it work?

These are the choices that confront me and these choices will impact my day and those around me.

The day began with reading a blog post... Maria Andros reminds me that the way I choose to make my money, grow spiritually, heal emotionally and become healthy will impact the other areas of my life. If I experience success in one, the other areas are also influenced.

In the words of Cheryl Richardson, "Choose Wisely!" In the words of Doreen Fulton, "Think Win, Win and Believe in Yourself and Hope For the Best!