Saving Energy & Finding Balance

Advocacy….We all get a chance at it whether it be for our children who have physical or cognitive disabilities or  whether we are advocating for our parents with Alzheimer’s or maybe we are advocating for the best medical care for our own illnesses, meaning ourselves. The main purpose for advocating is to educate others in our social circle about our loved one’s condition. Maybe your child is non verbal and you want their voice to be heard. There is a lot of emotion attached to the word advocacy especially when it is someone for whom you have deep concern.
             I believe it is sometimes an exhausting effort to educate the whole world. To be quite honest, I started out holding a burden that large because I was overwhelmed with my own son’s diagnosis. It is easy to get lost in the clouds, trying to navigate services for your child, and becoming educated yourself regarding ADA laws and Special Education laws. Most often there is no balance in your life for some time. In fact it is a major disruption in your life, affecting your marriage and sometimes your friendships. Balance was not in my life until just these past few years, and that is almost 16 years after my son’s diagnosis of Duchenne Muscular Dystrophy. In the early years, I thought that I would go to any expense to find a cure as I wanted my son to live a ‘normal’ life. Now as time has been on my side, I realize I was compensating out of fear for his and our future. We all want our kids to be healthy, however, that is just impractical. Look around us in nature, and see that not all things are perfect. I have found that the only perfect nature I see is at the grocery store when I see the genetically altered tomatoes. Is that what we want?
             Over the years, I have had some battles, but I learned early on that I could not pick every battle. It would take away from quality time from my family. I also think every battle is a distraction from what is really important. I have done things I never imagined for the best interests of my son’s education. Never once did I think he was entitled to a better education than his peers. If you fall under IDEA 504 plan or Special Education, you are entitled to a free appropriate education in the least restrictive environment, not more than any one else gets. Yes, it may cost more to provide this education, however that is the law. If your child is gifted and talented, he does not get more than the others, but he can get more appropriately designed work tailored to his individual needs, all within the same classroom shared by the Special Education kids. Teachers have a great deal of challenges and they work hard to meet those needs. Parents should not be their greatest challenge. This is not to say that school districts are sometimes non compliant.
             Some may wonder if this is the way to go with education. My own opinion is, yes, that it is worth the effort. Children today are exposed to many with different abilities. It was painful for me to watch my son’s abilities change as he went from appearing normal, to walking with an extreme overcompensation in his gait for fear of falling. For two years, he was the target of being pushed down, pushed on the stairs, and sometimes by younger kids. This was very emotional for us, but we did not want him ever to feel badly about his disability. It was after all not his fault. If we overreacted, we could also embarrass him so we had to walk a fine line. I chose to educate and brainstormed with our principal about how to educate the students without singling out my son. The result was an assembly in which I talked about many abilities and led the students into an interactive question and answer discussion. In the end, recesses were changed, to avoid the kids who targeted him, and my son was allowed to change class a minute or two earlier, so he could travel the hallway safely and independently. This was the plan in place until his abilities changed and he went to a wheelchair. The parents do not totally decide what their child needs in the classroom as it is a team that makes those decisions together. After all, we can’t always have it our way. These things I have learned over the years. I have fought a few battles I felt important, but I certainly have not wasted all my energy on every battle. I need that energy to care for my own needs and the needs of my son. 
             My interest in writing this particular story came when I read an article in the Lakes Region Weekly about parents of a five year old with autism. (March, 28, 2008) I mean no disrespect towards this family however I am left to wonder how they will advocate as long as necessary for their son when they are already so dissatisfied with their son’s services in kindergarten as he is only five. I can probably relate to some of their frustrations dealing with the school districts. I know they must be very good parents also because they are trying to see that their son is not overlooked. I also know that many kids who are developmentally delayed receive excellent support and services under CDS (Child Development Services) from birth until age five. As soon as school starts, they are no longer eligible. This is very scary for parents trying to advocate for their kids in the public school system. Many have heard about the horrors of the public school. There is a vast difference in the services provided by CDS and the public school. They must be very worried for their son all day at school. If their kids could communicate, it would be a very different story. I hope they have talked with other parents about what has worked for their kids. It is up to them to educate as tireless as it is. If a kid cannot function in a regular classroom, is it fair to that child to get the attention in a self contained environment? It is a tough call. I would want my child to learn to function the best he can inside a regular classroom [inclusion]and hope he gets better as time goes on, as it must be an all consuming for the families involved. My wish is that this family finds some balance in their lives and some solutions for they will be in great need of those resources down the road, when they may need caregivers, and maybe some time to resume some normalcy as a couple. Advocating can have a way of draining your every resource, emotional, spiritual and financial.

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