Saturday, April 24, 2010

Ten Commandments for Parents of Kids with Autism & Special Needs

These commandments have been floating around the internet in one form or another in various places for a while now, but we felt they spoke to the essence of what parents of children on the spectrum need be reminded from time to time. All of us deal with hope and heartbreak, recovery and regression and lose sight of these valuable principles as a result of things sometimes. Some parents print them out and post them as a reminder to themselves as to what is really important. Others bookmark them and revisit them when they need the comfort of their ideals. To each his own. Feel free to share them, save them, link to them, or encourage others to remember what is truly important in our lives one day at a time…all our children deserve nothing less.

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

2. Never underestimate your child's potential. Allow them, encourage them, expect them to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you'll be able to answer to your child.
You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Autism is the fastest growing disability on the planet according to the Centers for Disease Control. More children will be diagnosed with Autism this year than with pediatric cancers, AIDS and Diabetes combined. This means more parents and families will be looking for the same encouragement, assistance and answers that we are. Embrace them, Share with them, Support them in anyway and everyway as we ourselves would want to be treated. Regardless if you’re loved one with Autism is 18 months old or 81 years young we are all on the spectrum and deserve to be treated with respect and dignity. Gandhi said: “The truest reflection of any society is how it treats its most vulnerable citizens”. By treating others in our cause they way we ourselves want to be treated we set forth an example to inspire the willing and compassionate members of society. Compassion begins with Awareness, but must inspire Action if we are ultimately to make a difference for those living with Autism Spectrum Disorders today.

Saturday, April 17, 2010

Research or Relief

Autism is the fastest growing disability worldwide according to the Center for Disease Control. The UN reported that over 35 million people around the globe had Autism in 2007. To date research has been unable to find a cause or cure. Millions of dollars are pouring into more research even amidst the ongoing controversy over vaccine research and scandals, including $212 million from the Obama Administration. According to a recent article by Jenny McCarthy in the Huffington Post 1 in 4 parents believe vaccines have something to do with Autism. What about the other 75%? How do we explain those children who were not vaccinated who also have an Autism Spectrum Disorder? Without any answers and empirical evidence we only have opinions and suppositions. What are we doing to help those with autism now?

The majority of money and celebrity backed organizations have been focused on the vaccine arguement and are committed to funding research. Research is one important piece of the Autism puzzle, but it is imperative to recognize research dollars do nothing to help children and adults living with Autism today. Right now more and more families with Autism are losing their jobs, homes, healthcare, marriages and hope, while millions and millions of dollars continue to flow into research. As the prevalence of Autism continues to grow so do the numbers of people in desperate need of services and supports worldwide.

In 2009 the CDC reported the current growth rate of Autism at 1,148% impacting 1 in every 110 children in the USA, including 1 in every 70 boys. This is an increase from the 2007 report of 1 in 150 children. The October 2009 Journal of Pediatrics reported Autism affects 1 out of every 91 children between ages 3 to 19 in the USA. As the vast majority of national and international organizations remain dedicated to funding research the impacts and suffering of those living with autism grows in direct proportion. It is essential to realize that there is a distinct difference between supporting research and supporting relief.

Willing and compassionate individuals and corporations need to realize what they want to do. Do they want to help children and individuals with Autism Spectrum Disorders to live healthy and productive lives, or do they want to support research. Both of these endeavors have a role in the Autism cause and employ the very real suffering of children and families as a tool to raise money, but only one of them provides help to people now. Autism research is needed, however helping people with Autism get the assistance they need and deserve is equally important.

A study by Harvard University reported that the average cost for lifetime care and services for an individual with Autism is $3.2 million. As the number of families living with Autism increases so does the need for qualified services and supports. Another study by Cambridge University showed that appropriate early detection and intervention can reduce the lifelong costs of Autism by up to 66%, while helping improve the quality of life for people with Autism. Unfortunately, the funding to support the needed expertise and resources is falling farther behind the rapidly growing needs in the USA and worldwide. Simultaneously the astronomical costs associated with Autism discourage government agencies and insurance companies from being willing to step in and assist with these costs that bankrupt families.

The combination of the stigmas attached to the vaccine controversy and the lack of understanding about autism is exacerbating the suffering in your neighborhood and in every community around the world. These same issues impact the willingness of the media to cover autism more frequently, accurately and more effectively. The result is that corporations and individuals who want to help are uninformed about where to give and how they can actually help children and families with Autism. The belief that just because they contribute to a recognized Autism Organization makes a difference for children or families with Autism is misguided. In many instances they are supporting more research, lobbyists and overhead and not the children and families the desired and intended to help.

There are a plethora of fundraising events in the worlds of Pro Sports, Music and Hollywood, not to mention the TV Commercials with Celebrities and Athletes too. But, have you ever met a family with Autism who these events have actually helped…maybe you should ask families with Autism living in your community who is helping them before deciding where and how to contribute. These community-based events executed by large charities typically do not provide direct support to individuals in the community where they are held. This is true of most causes, not just Autism.

Connections + Money = Results. This equation ultimately determines what organizations get support and how much if any they’ll get. The big organizations have the connections and influence to raise and allocate large amounts of money to the research they are dedicated to. The community-based operations that are actually helping people with Autism do not have the benefit of the name recognition, connections and influence to attract the same opportunities and support to help all those in desperate need. The majority of local events attached to a large national organization maybe held your town, city or state but does not mean the funds raised will go to help people who live in your community. In most cases those funds go to the corporate headquarters of the national organization and are allocated to research, political lobbyists, TV commercials, operating costs, etc. This may advance research, but does little if anything to help those living with Autism.

A recent poll showed that over 90% of people surveyed believe the funds raised for Autism need to be directed to helping those children and individuals with Autism now. Less than 10% of those who responded said they believed these funds should go to fund research. Willing and Compassionate people want to help children and families struggling with Autism, but in reality they only know the name of the organizations they see on TV. Individual and Corporate contributions are supporting these outfits without understanding where the money is going.

Name recognition raises money and awareness about the cause, but these recognized organizations direct the funds predominantly toward the research aspects of the cause, and only use a tiny portion of it on supporting individuals with Autism. Although research organizations claim they help children and families with Autism, just like smaller the parent driven organizations in your community do. How much does the organization raise in these communities and how much are they investing in helping those with Autism in these communities. There are two sides to every story, but the truth can be found by following the money.

Wednesday, April 7, 2010

Don't Shoot the Messenger!

We’ve all heard the expression don’t shoot the messenger. Than why do we keep doing it? The facts won’t change simply because we don’t like them or the person delivering them. How can we expect to make a difference when we shout down those who speak up or simply ignore those with the courage to ask for help? Autism is a Spectrum Disorder it would be naive to believe that any one individual or organization could honestly represent the entire Autism Spectrum no matter how rich or famous they maybe. That is the reality of the Autism Cause. The needs of a Spectrum Disorder undoubtedly require a spectrum of solutions.

If Government, Celebrities and Big Box Charities were able to do the job alone they’d be doing it. Everyone likes to be recognized for making a difference. The increasing prevalence combined with the lack of expertise and supports is overwhelming limited resources. In spite of the efforts of Government, Celebrities and Big Charities the front lines of Autism have come to every neighborhood around the globe. A growing number of community-based organizations and parent driven groups are emerging to help fill the expanding gaps in assistance for our most vulnerable. Maybe it’s time we listened to what they have to say. These are the stories the media doesn’t cover. The stories of real people not celebrities who live with autism and those local organizations that are doing the work in the trenches aren’t made for TV. Regardless of your individual perspective one thing is for certain the Autism Cause Needs every voice to be heard, all hands on deck and all the support it get.

After attending dozens of government hearings and meetings with community-based organizations one thing is clear. Nobody cares more about their families and their cause than the families living with a loved one with Autism. They are immersed in the Autism cause, because they live with Autism every minute of every day. Autism takes no days off, no holidays or vacations. They face the economics, isolation, hopelessness and frustrations of Autism daily, but still find the strength to stand up and be a voice for their loved one, others and the cause. These people are the real heroes and the true celebrities of the Autism cause. They are doing what’s right even when it is not in style, popular or even understood by the general public. Would you have the courage to do the same? What if it cost you your job, your home, your health care, your marriage or your hope? This is one of the most difficult things to ask anyone to do.

9 times out of 10 the messengers for Autism are parents, family members and others bearing burdens few can ever understand, except those walking in the same shoes. Often they are poor, tired, hungry, frustrated, isolated and emotional as a result of the struggles they endure day in and day out. Celebrities, Corporations and Big Box Charities do not have a monopoly on opinions and good ideas…only money and media attention. And they certainly do not represent everyone on the spectrum, but they do have the abilities to be heard when families and individuals are ignored.

Many in our society choose to judge their neighbors with Autism instead on hearing their pleas for help…I’ve heard people say "I got problems too", or "they are just angry", or "they must be bad parents", even "I don’t help miserable people" and worse things I will not repeat here. People choose not to recognize what the true faces of suffering and lost hope look like…even when they stand right in front of them. Awareness is only the first step, but awareness that fails to inspire action changes nothing. Shooting the messenger doesn’t mean the message or the facts will change or problem will somehow go away…just the person delivering them will.

Autism Awareness Month is the perfect time to put differences aside and focus on all we have in common. Perhaps we should call it Autism Action Month? We must rededicate ourselves to a higher level of communication and cooperation by letting our stories be told and getting things accomplished, and not just reciting statistics and shining blue lights. Raise our combined voices in a powerful chorus that the world can no longer ignore, instead of being heard as the individual voices of a bickering constituency. The nature of a Spectrum Disorder defies the possibilities of any one size fits all solutions, any one voice or organization accurately representing everyone on the Spectrum. Our society needs to gain a better understanding of the diverse nature of the impacts and effects of Autism. During Autism Awareness Month all the voices of Autism and their calls to action need and deserve the opportunity to be heard, without us shooting the messenger.

Winston Churchill said “Courage is knowing when to stand up and speak; courage is also knowing when to sit down and listen.” When the messenger has the courage to stand up and be heard for Autism, the world would be better served to focus on listening to the message instead of focusing on how it is delivered or who is delivering it. Courage could be redefined as the willingness of the messenger to deliver the message knowing all the while what you and I already know…they always shoot the messenger. Churchill was right it takes courage to sit down and listen...Next time Please Don’t shoot the messenger.

Thursday, April 1, 2010

Be A More Effective Difference Maker

When we hear it’s Autism Awareness Month the charitable instincts inside us kick in. Sometimes we charge into action with the best intentions, but without the right information to make the best decisions. There are 5 questions everyone involved needs to ask first if they want to be sure they are making the greatest difference. It does not matter who you are…so if you’re a celebrity, corporation or just a dedicated supporter there are some things you need to know. They are Who, What, Why, Where & How? It sounds like a cliché or plain old common sense, but our take on these questions might surprise you.

  1. Who do I want to help? (the Cause, the People, the Professionals)

Find out about the cause. Learn about Autism, and not just the statistics. If you answered “I want to help Autism” then we’d explore what about autism you want to help? The first step has already been accomplished…wanting to get involved and help. But now the real question is who or what inspired me to want to help the Autism cause. Figure it out from the point of view you have…what’s important to you? Is it the Cause, the needs of Children and Families, the Professionals, Other Services…remember you need to decide.

  1. What am I doing to help? (Donating, Appearing, Sponsoring)

Once you understand the cause and who you want to help it’s time to ask what I am doing to make that help realized. Knowing is half the battle, right? So knowing what you are participating in is crucial. Is it an event, awareness campaign, donation, appearance, fundraiser, sponsorship or is it something else. Don’t do something just because it’s popular or support an organization simply because of name recognition. Make informed decisions and do what you feel is right.

  1. Why I am helping? (Help People, Help Research, Help Awareness)

This is the connection to the cause. “I want to help families with direct support”, “I want to help research find a cure”, “I want to encourage people to help” there are several reason why we help, and sometimes the reasons are more personal like for “my son”, “my niece”, my brother among others as well. This is your compass guiding your heart and support for this cause you care deeply about. A word of caution here…some organizations use celebrities, similar imagery and fundraisers, but support completely different things…so make sure you know why your helping.

  1. Where does the Money Go? (Direct Help, Research, Lobbyists, Other)

This is always where the rubber meets the road. Seems easy enough, but as in any meaningful endeavor there is more to it than meets the eye. After answering the first 3 questions this is something you already thought about…but if you find this a difficult question to answer then ask the organization or event where the money goes. You might be surprised one way or the other. Large events in your community may not even give money to people in your town or even your state, instead the money goes to costs and to the corporate headquarters instead of to the cause. So if you want to help in your community you might be better off supporting a smaller organization with established relationships compared to the national big box charity because of a name.

For Example: If you said “I want to help families with direct support” then make sure that is where the money goes. If you raise money for organizations that do not provide direct support to families with Autism…don’t be surprised when the money goes to research, political lobbyists or somewhere else. In other words if you’re supporting research make sure you are supporting research…If you’re supporting help for children and families with Autism make sure the money is helping them. Ask some directly in the cause. If you want to help families with autism then ask families with autism what they think about an event or an organization…they might tell you something you need to know. Don’t assume that every walk for Autism is the same. They may both involve walking but who the beneficiaries are could be very different…so find out.

  1. How does this impact those I originally set out to help? (People, Research, Awareness, Other)

This is the goal you originally set out to reach. Did I do something that contributed to making a difference for the people I set out to help? If you answered questions 1-4 you already know you did make a difference. When you understand the cause you want to help, the people involved, what you are going to do and where the money goes…You will have done more than simply meet the need…you will exceed even your own expectations.