Paying it forward….
“I do not pretend to give such a deed; I only lend it to you. When you meet with another honest Man in similar Distress, you must pay me by lending this Sum to him; enjoining him to discharge the Debt by a like operation, when he shall be able, and shall meet with another opportunity. I hope it may thus go thro’ many hands, before it meets with a Knave that will stop its Progress. This is a trick of mine for doing a deal of good with a little money.” (Described by Benjamin Franklin, in a letter to Benjamin Webb dated April 25, 1784)
When I first experienced the dilemma of my son’s exclusion and the desperate search for
help, I will never forget that feeling of finding that lifeline of information. I was able to successfully advocate for the needs of my own son and learn the process within the first year. I didn’t need to remain involved helping others. It was a choice I made to pay it forward – to keep others from unnecessarily going through what I did because of lack of information. You can see from the quote above this is not a new concept but rather something people have been doing for centuries.
I know that I have helped many following this simple concept just as so many before me did also. It takes very little to pass on a piece of information and a word of encouragement to another going through the same things that you are or already have experienced. That information that, to you, seems common place may be a major revelation to another just starting out on this path.
I continue to come full circle to the commonality we share as parents of children with disabilities that others will never be able to understand. To fully understand what parents of children with disabilities experience you have to be a parent of a child with a disability. Whenever possible take an opportunity to share information with others about your child’s disability and the lessons you have learned.
I am becoming increasingly aware of my age these days approaching the big 60 and the inevitable changing of the guard. For decades now I have paid it forward and then some. It is so difficult to let go but then it is past my time to lead and time for the next generation to step forward. Where are these heroes? If you are reading this – step to the closest mirror to look for the answer. You can be that answer through your involvement.
I have often used the analogy of passing on of information from one parent of a child with a disability to the next parent, generation after generation as the Amway of parent education. The outcomes are similar in establishing a network of others to which you pass on a product. The difference is the product you are passing on is experience and information. The product is tailored to the individual need and success is measured by the amount of product shared. Parents are the best source of resources and information.
I think one of the biggest barriers for parents is our failure to put things in a simplified manner when sharing information. I have caught myself using acronyms as fluently as professionals and had to stop and check myself from continuing. The really sad thing is that so many are so overwhelmed by a process that really isn’t that difficult to master. It is actually simplistic in nature if you look at what truly needs to happen.
Tracking progress and establishing how to measure that progress are the keys. We become so engrossed trying to understand methodologies that we miss that there are no baselines from which to track the progress and without baselines there is no way to determine if what is being done is working.
Your success and that of your child will be commensurate to your knowledge of procedural process, your willingness to be involved, and the ability to collaborate with your school system.
Understanding that when we track progress and find we are not on track to reach mastery of any goal then we ask for more or different. The basic concepts are not new and have already been tested in courts. There is no need for further interpretation and once you have mastered the process it is repetitive.
The important thing, and probably the hardest to effectively impact systemic change, is to continue to remain involved and help others once you own individual needs are met. We all have a tendency to want to have a life and to – at least for a brief respite – ignore the lifelong commitment to disability and its everyday impact on our lives. Ultimately this complacency will be short lived once you realize that your constant monitoring is needed to achieve satisfactory educational gains and failure to do so results in having to exert twice the effort to regain the ground lost. A steady maintenance of effort produces the best outcome long term. Embracing the culture and sharing the wealth as you proceed forward with your life’s experience will help not only in your coping with your journey, but ultimately make the journey easier for the next person following in your footsteps.
What necessitates this involvement by so many? It is the reality of the enormity of this task due to the fact that it can never be accomplished. No matter how hard we try even as you read this another child is being identified. There is no possible end to the task of trying to provide the information that parents need when they need it. For two decades I have tried to swim against this current of need and reach as many as possible in as many different ways as I could. So what is the solution?
I know that it will not happen in my lifetime but maybe in yours. Just as in any civil rights movement from women’s rights to racial inequality the struggle will continue as long as one person feels it is acceptable to look the other way rather than take a stand for what is right.
So the answer lies within each of us to make the choice to think of others, and not just ourselves, and make a difference in the life of someone else.