It's July 4th, 2009 and in the United States that means we are celebrating Independence Day. As I watch my boys play this morning and think of the soldiers who have bravely served our country throughout the years it gives me pause. Many of our friends (including many of you) live in a country where the idea of freedom, and the benefits we often take for granted in the United States, is a distant dream. You face hardships and struggles that we (in much of the free world) only imagine and see in the movies. Although governments may disagree, we share a common goal when it comes to wanting the best for our children.

A news station just aired a segment on Celiac Disease and the increase in diagnosis throughout the United States. There are 2 million Americans with Celiac Disease and it is on the rise in the United States. Celiac Disease is 4 times more common in the United States today than it was just 60 years ago. The report stated that Celiac Disease is genetic and passed along to family members; but, there is a substantial amount of information showing that environmental factors are also being recognized as playing a much more significant role in those being diagnosed.

There is something interesting in the two events that I have just witnessed. My children (one of which has Autism) enjoying playing together during this national holiday when we celebrate Independence and the news story highlighting that genetics and environmental factors are recognized factors in a growing area of medical diagnosis such as Celiac Disease. These are all chords played out in the Autism community daily. Parents seeking independence for their child and praying for a future where their child will not be solely dependent on others for survival, parents quietly praying for the strength to fight the tough fight of being a parent of a child with a disability that remains as confusing and unclear as it did 5-10-15 years ago, and the issues that our communities have with trying to make space for our special children who are quickly becoming a major force in the adult community.

The Autism community is connecting and becoming a powerful force. The mass movement demanding better health coverage, education, and community acceptance for those with Autism is amazing, emotional, and impressive. What I find disappointing is the vast amount of infighting and bitterness that those within the Autism community express towards others who are equally entitled to their views and feelings and who are part of the Autism community. Money is being poured into negativity and misdirection that will not positively improve the quality of life of those with disabilities. There are people spending time trying to redefine words like disorder, disease, recovered, recovery, diagnosed, and label. The reality is, this effort is often creating more confusion and is “change” for the sake of change. Individuals blindly believe that there is such thing as "taking sides" and are acting in a manner that they believe will support their "side". I often find myself reading articles, websites, message boards and trending topics and when I am finished the energy has been sucked out of me completely. I begin to pray that the callousness and hardened hearts will soften. Is this callousness and anger something the writer carriers into their home and is it being felt by their child who is already struggling? What will the child think about the parent's actions when they are able to understand what the parent is "taking a stand for"? I understand that some parents may never know what their child is thinking and may never know how much their child is truly absorbing. I don’t believe this is a free pass to act as if the child doesn’t know. This is not a free ticket to demand, speak harshly, or attack others blindly either. In interviewing, filming and meeting many adults living with Autism (and many other disorders) I often leave with one, single theme.....accept me for who I am.

Does acceptance mean that we shouldn't look for answers, cures, therapies, interventions, supports, or clues? Of course not. The world and life is not simply black and white. We should, for all disorders and diseases ranging from Autsim to Parkinsons to Multiple Scelrosis to Cancer and beyond, search and fight to eliminate those things which limit a person from being fully capable or able of living a healthy and full life. But, living a healthy and full life DOES occur even when someone is different than the typical “picture of perfect health”. You can live a full life with Autism, Parkinsons, MS, Cancer and other disorders and diseases. Maybe some things that are easier for others is much harder for your loved one, maybe their years on this earth are shorter than others, maybe they will always need assistance and help on a daily or even minute-by-minute basis. These are terribly challenging and difficult situations and circumstances that have NO EASY ANSWERS.

Sam has challenges that we cannot always see. Often, Sam’s greatest challenges exist inside his head and lack of the outward “obvious” challenges is hard for the world to understand. Autism took him from us (so we thought). What we learned was, we simply were looking in the wrong place for a little while. We stopped thinking how things were "supposed to be" and starting saying, “How can we meet Sam where he needs us to meet him?” Around that far off corner, I met my son for the first time many years ago. I shed the legalism and borders that I had in my mind about how things “should be”. It was this action that allowed me the independence to begin knowing my son for who he is. We made determinations on therapy approaches based on what Sam needed and not because it was the next big "thing to do". We stopped listening to all the noise and started looking at everything differently. We would ask ourselves, "Why is this person promising us that this xyzabc is going to be what allows my son to recover when it has done nothing for their child? If it works for "everyone with Autism" how can you blindly ignore the fact it has done nothing in your own home?” People so want to connect and belong to something that sometimes common sense flies out the window.

Be an independent thinker. Maybe you don't realize it yet but the world sees through the facade. Experts in any field don't make them experts regarding your child. Sound practices and approaches don't have to work for everyone and be approved by a specific group or entity to make it right for your child. If the approach works for your child then it works for your child. We are independent thinkers and our children are not tethered together in a manner that promises one size fits all. Rallying cries for various movements are great but you should know what it is you are rallying for. Shifting seas and rough waters don't go away just because a single law passes or because a "breakthrough new article" was released. Breakthroughs happen when you find the things that better the life of your child. 99 of 100 people can see great improvement but when your child is the 1 standing alone that hasn't benefited, it can be a lonely place.

As a community, we should have learned by now that not all our children received vaccines, not all our children have food allergies, not all our children have heavy metals in their system, not all our children are born in the United States or in hospitals or have air conditioning or beds to sleep in but yet we still share something known as Autism. When it comes to what causes Autism, I don't have any answers and instead it’s just a growing list of questions. I see fabulous fighters on the front line in the areas of science, research, political advocacy, better homes for adults with special needs, and these warriors are fighting to make the world a better place for our children and all children to come. We should never lie down and accept that things will always be this way. Things change, diseases and disorders can be battled and even slowed, and we can do this with professionalism, respect, and dignity for others.

We must be independent in our thinking so that we can truly see our own children, meet them in that place where they need us to meet them, love them unconditionally and say that improvement or not, we will love them for who they are in their perfect form. I celebrate the independence that Multiple Sclerosis introduced me to when I was a child and I celebrate the independence that Autism has introduced me to as an adult. When I started shedding what society thought of me, what society thought they saw when they would see my Mom or my beautiful boy, that is when I truly learned what it meant to be free. May God bless you, your family, and all our children. May independence from the darkness be a goal we all share.