Martha's Thoughts
One of the most rewarding things about working at the Connection is meeting and helping new families that come our way when they have had a baby born with Down syndrome. This may sound strange because this is primarily why we are here.however there are many facets to what we do around the Connection. I just have the pleasure and the privilege of working with new families as they come to us for the first of many times.
Meeting with parents as individuals or in group as they struggle with the newness of their child's diagnosis is to me, viewing life in its purest form. We are all newborns so to speak, with all the vulnerability that life can hand us. We most often are shattered, frightened, feel alone, angry and lost. We are in many ways dependent on the knowledge of others, have to trust unconditionally and have to learn how to walk (so to speak) before we can reenter the life we knew before our dreams were altered. You might ask where is the reward in all of this? To share in grief, sadness, confusion and whatever else parents bring with them for the first of many meetings can't be all that exhilarating. And to be honest it isn't. It is moving to say the least. It brings back many memories for me about the birth of my own son born with Down syndrome 31 years ago. And yet it is well worth the sadness I often feel right along with everyone else. For you see sadness is followed by new growth in each parent that I meet. It's the growth and acceptance that leads to joy, happiness and appreciation of a new life that brings the reward. It's sharing the struggle and finding new strength in each other that brings the reward. It's the laughter and tears that brings the reward. It's the unconditional love and growth that I see in all of you that brings the reward. And it's learning that our children will help us to appreciate their life to its fullest, no matter what the cost, that is the reward.
Thank you for this most precious privilege.
Martha
This year the Down Syndrome Connection turns 10 years old. It is hard to believe those 10 years have passed so quickly. In looking back at this most incredible journey I have been privileged to learn many valuable lessons. I would like to share my thoughts about a few of these lessons if I may.
First I have learned that anything is possible even when you are faced with enormous challenges. We started 10 years ago on a hope and a prayer, with no resources, no home base and very little knowledge of what it took to start a non-profit organization. The small yet very talented group of people, that were determined to continue to serve children born with Down syndrome and their families, went forward and never looked back and most importantly, never gave up the dream of the Connection.
Through our struggles I have learned to be a better leader, listener and organizer. I learned to be more accountable to those I worked with and for. I have learned to be humble and to ask for help from friends, family and community. I experiencedsthe miracles of giving on everyone's part and the joy, growth and results thatscame from enormous sacrifice and passion for work to be done. I learned it is notspossible to fix people, that it is more important to listen, help, educate, consolesand reach out to those in need. I have learned that all of you and your beautifulschildren have taught me more about life and the beauty that lies within eachsindividual than I ever thought possible. I have learned that you give more to me assan individual than I can ever give back to you. And for this I am eternally grateful.sI have learned there is so much value in each person we meet; no matter howsimpacted their lives are with Down syndrome and other challenges. Parents havestaught me to understand my own sons better and to appreciate everyday we havestogether. I have learned that both life and the passing of those we love is a journeysthat enriches our souls. I have learned it is good to cry and wonderful to laugh nosmatter how hard some days are. I have learned that I love working with all of yousand realize that even though I no longer am in the role of Founder or ExecutivesDirector that my commitment is far from over. My work in many ways is moresrewarding and, there is still so much to be done. I have learned that growth in eachsindividual never stops. Our children will continue to amaze us no matter whatstheir ages. I have learned that nothing replaces the love of family. Your families andsmy own, especially my husband and son Blair, have helped these 10 years to be ansextraordinary journey.
I thank you for listening and I congratulate all of you for helping to make the Down syndrome Connection of The Bay Area the wonderful organization it has become.
Martha
Three months have come and gone and more news about Individuals with Disabilities Education Act (IDEA) has been released by the National Down Syndrome Society. Now, when parents fight their school district's legally to obtain better services for their children, the US Supreme Court has denied reimbursement of expert fees even though the parent wins their case in court. This decision comes on the heals of a recent decision by the Supreme Court that the burden of proof is now the responsibility of the parents who challenge the appropriateness of an IEP, unless the state statue places the burden of proof on the district.
This is some pretty devastating news; however, do not let it discourage you from fighting for what is right for your child in the school setting. I think these decisions have a lot to do with how we fight for our children. The last resort, which now so commonly is the first resort, is that parents hire a lawyer to fight their battles. Unfortunately, this is not always the most efficient, economical or practical way to assure that your child will receive what they need or deserve. Due to lawsuits and unions we face division between school and parents. Who loses? The child! Who wins? The lawyers! Who feels like giving up? The Parents!!
How can we begin to bring back some sense of collaboration, credibility and fair play on the part of both parties? It certainly will not happen in court. And if you should win in court it will only affect your child and not the whole. So eventually, you might find yourselves doing it again and again until needless amounts of money and resources are wasted.
It would be wonderful to bring back the days of a round table where parents, teachers and administrators alike could meet on common and equal ground to plan what is best for the child they are serving. Parents, have your facts straight, know what you want and do not deviate from the plan you hold for your child. Negotiate and try to work things out. Hold your school district accountable for what is agreed upon, take a friend or knowledgeable advocate to your meetings and leave the lawyers home. This just might start to change things. But if in fact your school district is too far gone or too corrupt, stand firm and don't sign your IEP. Pull your child out of school until it is right and safe for them to be educated. Band together as one, numbers are more powerful than lawyers. Turn to the media and those who can help mediate the situation. It doesn't always have to be in court. I'm not saying to play nice but I am suggesting playing smart with a common goal in mind.
Wouldn't it be wonderful if the whole nation of special education were put on notice? I would love to see all special needs students go on strike until things can be worked out between teachers and parents. First, it would shut down the system and second, it would send a strong message to administrators that they are not needed and only muck up the process. Of course most might say that this is just a pipe dream. However, dreams can come true.
If you aren't a dreamer it is now, more than ever, a time for parents to be well informed about their child's rights, to develop effective advocacy strategies and to access free and low cost resources available in your communities. The NDSS website www.ndss.org might be a good place to start along with local organizations that are available to help. Some of these local agencies include Protection and Advocacy, CASE, DREDF and Family Resource centers. And always available to you is the Connection.
Martha
