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Down Syndrome Australia
What's more fun? Playing golf or reading up on Special
Education Rights and Responsibilities, revised edition, April 2003?
At my age and where I am in my life, golf is definitely more fun and
sometimes easier than understanding and "digesting" the laws and
regulations we as parents face today when trying to accomplish
what's best educationally for our children. WHEW! And now the
real work begins. The reason I say this is because it is so important
for each and every one of you to understand the laws that regulate
the special education services your children receive. These laws are
there to protect our children so that they have the right to a free
and appropriate education, specifically designed to meet their
unique needs in the classroom. However, many of these laws have
been revised so that educational services aren't as easily understood
as in the past. Now, more than ever, it seems the very systems that
should be helping our children are in fact limiting them to more
restrictive educational environments.
As standards for education have intensified due to the
interpretation of "no child left behind," we see teachers teaching to
tests, not for the love and richness of subject matter. Creativity,
enthusiasm, and fun in the classroom is being replaced by standards
and benchmarks. It is a sad scenario for all children, and the trickle
down effect it is having on our children is even more devastating.
We are seeing more children with special needs being placed in
special day classes versus providing them with the richness of
mainstream and inclusion. Parent's rights and the rights of our
children are slowly being stripped away by teacher unions,
administrators, and the government. The value that children with
disabilities lend to the whole of society in many ways is all but
forgotten. I do not intend to discourage you by what I write here; I
only want to help educate YOU to the reality of what we have to
face and fight. How do we fight for educational rights for our kids?
We learn the laws, we reach out to good advocates, we search for
tough lawyers, and we stand firm in the belief that our child has the
right to be educated along side their non-disabled peers. Richness
in education and life comes from embracing diversity. We all, as a
society, benefit from differences and the variety of gifts and talents
each one of us brings to our communities. Please, for your children's
sake and for your dreams for your children, educate yourselves
about special education laws and band together, stand tall, and
know that your child is worth every battle before you.
A note from Spring 2005 Vol. 8.2
Dear Parents and Friends of the Connection,
For longer than I can remember it has been brought to my attention that moms and dads who have a child born with Down syndrome do not always approach their child, the care of the child or their dreams for their child in the same way. This does not come as any great surprise because by their very natures, men and women approach most things differently. To explain this more fully might take longer than this article, however, let me try to put into perspective why such things happen and why mothers with their young child with Down syndrome sometimes feel isolated, alone and left to carry the burden by themselves. Women by nature nurture. Men by nature fix things. When a child is born with Down syndrome it is like the shattering of a glass as it falls to the floor. Parent's dreams of having a healthy child are also shattered. Moms, most of the time, react with great emotion while Dads react most times in a different way. They become very stoic, detached, seemingly unaffected and tend to fix things from dripping faucets to broken fences. The deep seated reality however is that they cannot fix this baby and worry about losing their wife who is grieving in a whole different way. Dads become busier at work while moms become the expert in therapy, advocacy, medical issues and caretaking. Mom assumes he doesn't care or can't cope. Dad assumes she is "over the top" and may never return to the woman he married. What to do! What to do!!!
Usually, with time, support, adjusting to the world of Down syndrome and getting to know your child as "a child first with Down syndrome second" life does seem to become a little easier. And yet the hearts of many parents are still broken, bruised or fractured in ways that can often lead to couples growing distant from each other. There are no easy solutions. However if I may offer a few suggestions that have helped others maybe those who are still struggling might find some relief and comfort. In the beginning when emotions run high for both parents, hang onto the fact that these emotions are necessary and normal in your process of grieving. Don't judge each other, just hold each other. As time goes by allow your communication to grow. Share your fears, heartaches, sad times and joys with each other, not separately. Be patient with each other and learn together about your child and the world of special needs. Dads have to continue to work so Moms please understand if they are not always as involved as you are in the day to day therapies and learning curve. When Dad does come forward to help, let him participate equally and ask for his involvement. Don't assume that you know how your spouse feels about your child or you. Ask each other. False assumptions can lead to big trouble. Hold each other when you feel like giving up. Cry with each other when necessary and forgive each other always. Remember, our learning curve is life-long and the greatest teacher, if we pay attention, is our child born with Down syndrome.
A note from Winter 2004 Vol. 7.4
Dear Parents and Friends of the Connection,
As seasons have come and seasons have gone we have grown into a wonderful agency. Over the past six years it has been a pleasure to watch the Down Syndrome Connection start as a grass roots organization and grow into a full fledged agency that serves more than 1000 families across the Bay Area and other parts of the nation. I am so proud of our very talented staff as well as our creative and dedicated Board of Directors. Our growth continues to be staggering as we remain the only agency in the Bay Area to serve exclusively those persons born with Down syndrome and their families. Our unique programs and services provide incredible support that cannot be matched. And yet I feel we can do so much better. Acting as Executive Director since the inception of the DSC has truly been a pleasure and a challenge but I also recognize that parent support and the degree of advocacy that should be provided needs attention. I am therefore resigning as Executive Director by January 1, 2005, yet continuing my service to the Connection as Director of Parent Advocacy and Support. I look forward to my new position and can assure all of you that we will find a capable, talented and energetic Executive Director. With this person at the helm the Connection will continue to expand it's horizons in order to help the many families we now serve and families that are yet to come. As a parent run organization we always welcome your input and suggestions as to how we might serve you and your family better.
In closing, I would like to take this opportunity to thank all of you for your support over these past six years and ask for your prayers as we venture forward as a strong viable and dedicated organization that embraces challenge, change and great hopes for the future.
Summer 2004 Volume 7.3
"I'm too old for this." "I'm too tired." "They are wearing me down." "They are supposed to be helping my child and my family, aren't they?" "I feel like all I do is fight for a good program." "I don't think they care about my child." "They are not being honest." "I feel like all we do is fight with the school district." "They are forcing me to look at limited programs." "Not all of the programs are available to my child." "No Shopping say the program specialists." "What is shopping? My child is only in preschool." "Inclusion is only for social building skills not academics." "No one is being accountable for my child's modification in her classroom." "I can't communicate with my child's aide anymore, they won't let me." "There is no communication book so I don't know what her day was like." "I was told I could not view my child's class and that they would call security to remove me from the school campus." "I'm told my child should only have functional academics and he's only 6 years old." "I'm scared the proper support won't be there for my child in middle school so therefore he has to be placed in a special day class, not inclusion." "My child is failing inclusion." "It's only glorified babysitting." "My little one has been in five different schools in her first 6 years of life." "My child has to ride the yellow school bus for one hour and twenty minutes each way everyday to her program and we only live ten minutes from her school." "I wish I could drive my child to her class but I have other children that also have to be taken to their schools." "No one in administration will return my phone calls or answer my e-mails, they are always in meetings or too busy to talk to me." "I was just informed by my district through a newsletter that our daughter no longer needs speech therapy now that she is in High School. The only problem is my daughter has limited speech and should receive this service until age 22." "I do not feel like I am part of the IEP team and, I'm the parent!" "How come it's an administrative decision as to where my child is placed." "Why is my child being placed in a program that is inappropriate for her education?" "Are our children placed only where space is available, not where it is appropriate for them?" "I do not feel I can trust the IEP team because they are only interested in their views not mine, since I'm only the parent." "I had a good IEP meeting but will they come through with everything that was promised for my child?" "They are out of compliance once again." "I have no where to turn." "I wish I knew if my child was getting the right program, it's so hard because I don't speak very good English and can't always understand what they are saying." "I'm afraid to say anything negative to the inclusion support teacher as she might take it out on my child in her school setting." "I'm afraid they might think I'm a bad parent if I complain too much." "They think I'm crazy." "Transition is so confusing and yet no one really explains how it works." "It's now June, the school year is over and I don't know where my child will go to school next year." "If only they would return my phone calls." "Why do administrators and teachers have so little time at an IEP meeting when this is the only meeting we have annually about my child?" "They are always looking at their watches and have to rush to the next meeting and when it's my turn as a parent to speak for my child, half of the IEP team has left for another appointment." "I never get assessment reports before the IEP." "Most of the time I feel like an observer, not a member of the IEP team." "Your child is in good hands, trust us they say." "I feel like they cap my child's potential when they only see the Down syndrome and not my boy."
What you have just read are quotes from parents that are experiencing the real life, day-to-day grind of special education services. Someone once said "what is so special about special education," and if the truth be known it isn't so special. It is hard work advocating for your child in a system that is supposed to be helpful but ultimately can be harmful if not administered in the right way. Not to say that most of special education in whatever form can't be a good thing, but when parents start sharing what is happening to them and their child it can be very disturbing.
Everyone by nature wants to be liked and viewed as a nice person. I give permission to all of you out there who have ever said any of the above to not worry about being liked. Ultimately you will be respected for your opinions, your fortitude, your dedication and your forthrightness to speak up for your child and to do what is best for them.
Some tips that might be helpful if you find yourself somewhere in this sea of quotes is to:
1 Never feel that you have to fight battles alone. I speak from past and present experiences with my own child. Call a friend, call the Connection, reach out to someone who will listen and understand your dilemma.
2. Call a legal advocate like Protection and Advocacy or CASE, they are there to help. Call the Connection, we can help. Call your regional center case manager and your local family resource centers they can help.
The important thing is to not carry this burden alone. There are many others who want to see vast improvements in the system of education for all of our children. Be strong, be wise, be hopeful and surround yourself with those who care.
In closing I would like to say thank you to administrators, teachers and special educators for your hard work and devotion in such a challenging field, but also to address the ongoing concerns that face us today. PLEASE do your homework. Listen to parents and be accountable for your part in educating our children.
Spring 2004 Volume 7.2
Recently I was talking to a friend of mine who also happens to have a son with Down syndrome. In the course of our conversation she asked me the following question, "What would our lives be like if our sons had been born not having Down syndrome?" It was a profound question and one I have thought about over the years. When my son Blair was first born I think I would have done anything to change the fact that he had Down syndrome. But as he grew into the person he was meant to be I realized I also grew right along with him and became the person I never knew I was meant to become. So as my friend and I talked and shared our views about "What If" and how our lives would be different, some amazing things were brought to the surface. Things that only those who have walked with us can appreciate.
Before our fourth son (Blair) was born, I was in a world of innocence, perfection, somewhat shallow and definitely not broad minded. After his birth I became aware of more feelings than I ever knew existed thus allowing me to grow in a direction of greater understanding and love for the delicate balance that only life brings. I met people whom I would never have met had it not been for Blair's birth. These people helped me to believe in him, see his potential and ultimately realize he was OK just as he is. I've made friends with folks who would have never crossed paths with me had I not had Blair. I've learned about ability and disability and how blending both bring out the best in all of us. I've watched my family grow and learn and benefit from the fact that their brother faces different challenges than they do. Through struggle and tears, frustration and acceptance we as a family have grown in so many ways with those we have met because of Blair. He has been and still is our teacher, our joy, our entertainer and has pushed our patience at times beyond belief. He has helped us to hold each other, to cherish every day, to write poetry and embrace all the challenges life brings. We have been given a gift that has helped us to feel whole. I can truly say that because of Blair and his challenges our extended family, friends and community are more in tune with themselves and their surroundings than they ever would have ever been had Blair not been born with Down syndrome. Would life be easier, more perfect, more convenient? Possibly. Would life be as fulfilling, broadening, blessed and challenging? Absolutely not!
In ending there is a line from a love story that sums it all up, "You Complete Me." Thanks Blair and thank you my friend for asking the question "What If....."
As many of you know (and if you don�t I�ll tell you), my true passion in life, besides helping parents and children, is the game of golf. This past weekend, as I was watching the life story of Bobby Jones (one of the greatest golfers of the game) I learned a very valuable lesson. The game of golf truly equates with the game of life. There is beauty, surprise, excitement, suspense, humility, disappointment, great expectations, fury and elation all wrapped into one. At times, one feels defeated to the point of giving up and yet, with the next good shot one is ready to play forever. Some people think it is a silly game, a waste of time, yet the people who persevere and continue to play learn more about themselves as survivors than one can imagine.
Those outside the fray might say why bother? Who knows, maybe all golfers are a little crazy! Let�s get back to Bobby Jones. For Bobby the game was easy, a natural gift that separated him from the norm. His career is one not matched by many, if any. In his later years Bobby was struck by a very disabling condition that not only prevented him from playing the game he loved but prevented him from walking. In addition he suffered from a tremendous amount of physical pain. When people asked him if he felt resentful or despondent, he only replied, "I look at life as I look at the game of golf; I play the ball where it lies." He didn�t dwell on his inability or discomfort; he continued to embrace what life could offer him and what he could offer in return.
As we live our life parenting a child with Down syndrome or other challenges I often think that somehow our experiences might also equate to the game of golf. Certainly we all dream of perfection for our children and ourselves. Many situations that we face are similar to shots in golf. We can hit the perfect drive or we can hit one out of bounds. We can be fooled into thinking life is always perfect and successful and yet in one quick moment we can have our perfection shattered and realize that there are hardships, disappointments and challenges beyond our wildest dreams. We can pack it up, walk away, check out of the game and refuse to accept our fate. On the other hand, we can be like Bobby and play the ball were it lies, accepting our human vulnerabilities and doing the best we can to give life and what it offers our best shot.
"Play the ball where it lies," a simple yet profound statement. A philosophy that might just help us gain the confidence we need to be the very best for our children and ourselves.
Here�s to a grand round, not only in the next game of golf but also in life.
A word from our Executive Director, Martha Hogan
Recently I have been thinking about how unique each and every one of us is. We all come into this world with abilities and talents that are innate as well as learned over the course of our lives. We are also taught through the actions of others how we are viewed and thus view ourselves in a similar light. This can be both good and bad news. If we are born into this world with love and acceptance surrounding us we will ultimately learn that we are valued and loved for who we are no matter what our innate limitations may be. If we are not loved or accepted for who we are, we may never be able to reach our fullest potential or share our talents with others who are in our lives. Life, I have discovered, is a constant learning curve. I have learned I can only change myself. I have learned that those I love can only change themselves. I have learned that by accepting differences in each other allows for a fuller, happier life. It has taken me a long time to learn these things. As simple as these concepts seem they can also be very complex in nature. I realize I cannot fix others but can only accept them for who they are and help them to be their very best.
When new parents come to visit the Connection for the first time, one sees all the struggles of love and acceptance in their eyes. I too had, and still have, similar struggles as my own son continues to grow, change and amaze us. When he was young however, I struggled daily to accept him for who he was and the many limitations that engulfed his being. Once I realized that he was happy being who he is, it made my life and the way I viewed his life a lot easier. This did not happen overnight but took years to learn. Who taught me? My son, that's who. Therapists, teachers and others can offer words of wisdom, support, education and understanding but none can offer you acceptance for what you cannot change. Our children are the only ones who can truly help us with this process. Bottom line?...They are who they are.
May our worlds and hearts and abilities remain forever appreciated through acceptance and love.
A word from our Executive Director, Martha Hogan
A few weeks ago my husband, our son, Blair, and I had dinner with some new friends. As the evening progressed and we all became better acquainted, one of the guests came over to Kevin and me and told us that Blair, our adult son born with Down syndrome, is the essence of life. This touched us deeply and thus led me to share with you a segment taken from one of our newest library books that describes in depth how Blair has touched our lives and the lives of so many that know and love him. These simple yet profound words that follow truly capture the essence of Blair and what he has given to us as we continue our journey with him.
MY Gift, The Magic of a Special Child by: Daniela Geracitano Vance "I love you because you are my responsibility--you need me, But I need you more."
I will teach you,
But you have taught me more.
I will pay your way,
But I can never repay you.
I will pave a path for you,
Knowing that you paved mine first.
Your are my ball and chain,
But you free me from my chains.
You are my cross to bear--you are heavy,
But you make me light--lead me to spiritual freedom.
You ground me,
And you give me wings to fly.
You are a paradox:
You make me a paradoxer--make me contradict
myself and speak the truth.
You make me realize that anything can happen to me
--bad or good,
But you teach me also that I can control my reactions
--I can control my mind and heart.
It is how I handle what comes my way that really counts.
You make me ask, "Why me?"
Ask "Why not me?"
And think, "Thank God it was me."
You show me that things rarely turn out exactly as I
plan them--you help me redefine "perfection,"
Surrender my quest for a perfect life,
Discover where perfection does dwell--in the love
for one's child.
You make me see my fortune--count my blessings.
You teach me that it is my duty to make the most of
what I have been given.
You teach me the meaning of life.
You give me the desire to use my talents and skills
for good instead of greed.
I prayed to God to help me help others-- you are the
answer to a prayer.
A word from our Executive Director, Martha Hogan
As we begin the 2003 new year I am proud to say the Down Syndrome Connection is celebrating it's 5th year anniversary. Where has the time gone? It is amazing to think of where we started and what we have accomplished in such a short time. For those of you who don't know or recall our beginnings, allow me enlighten you. The first year, our office space was in one of my spare bedrooms at home. We did not have phones, files, computers, funds or educational equipment. We didn't have written materials or any library books. Our referral information and resources were no longer available to us and we had no roof over our heads for our educational classes, "The STEP Programs." We were basically up a creek without a paddle or a boat for that matter. But, what we did have was a group of courageous founders that had vision and determination to continue the work that was started so long ago by Virginia Pearce. Kate, Nancy, Karen, Kim and I believed in helping families and so with the help of a brilliant board of directors we moved forward on our journey as a new non-profit organization. Endless hours of work, fundraising and support were given to the Connection so that our mission could become a reality. Janet, Linda, Dr. Trotter, Kathy, Terese, Tim and Phil, to name a few, are responsible in part for what we have become.
In the beginning, in 1998, as now, we owe so much to those who were and continue to be our silent partners. The following are only a few of the many that have helped us to succeed; the Town of Danville and various churches that provided free space for our STEP classes. Our teachers who received payment only when the money to pay them was available. And lastly, the endless stream of volunteers, who came forward to help us in our STEP classes plus providing necessary supplies and never-ending energy and devotion.
It is also a known fact that contacts to the greater community are a lifeline for new non-profit organizations. And so with heartfelt thanks and appreciation I have to acknowledge my husband, Kevin, who played such a vital role in helping the Connection connect with foundations and corporations that helped us become fiscally sound. Kevin never complained once, as our home became office/meeting room for support groups and other activities. We owe so much to this very silent, strong and humble partner. In short order, a mere year after we started our quest, the Connection became a 501 (3) non-profit organization and we found our home away from home in the office we reside in today. It is a perfect space for all the families and children we serve.
From 1999 to present day we continued to grow and expand with the help, love and talents of those who stayed involved, and became involved in the Connection family. Community organization and clubs, local businesses, foundations and corporations along with fundraising efforts allowed us to become an organization that has far surpassed our hopes and dreams. We went from offering 2 classes in the first year to offering 11 classes today. These classes are held in Danville, Oakland, Castro Valley, Albany and most recently, Antioch. The brilliance and leadership of Kate Sefton and Nancy Henderson has allowed us to grow from 3 staff members to 10 staff members, serving over 100 students each week during the school year plus summer classes.
And so as I have stated, our dreams have become realities and our prayers continue to be answered. We have so much to be grateful for as our hearts continue to hold memories of the past plus the promise of a wonderful future. We all (including founders, board members, those who have provided funds, staff, volunteers and families we serve) have so much to be grateful for and proud of. May our 5th Year Celebration be one of many to come for the Down Syndrome Connection!