“We must become the change we want to see.” I believe this famous quote from Mahatma Ghandi resonates in my Autism family. I encourage my children to wear their diagnoses on their foreheads. “We are an Autism family.” I oftentimes declare, when my son decides to flap his hands or perseverate on an item in public. Additionally, in private I continue to teach them the skills to survive. I encourage them to communicate, in any way they need to in order to make their point. I teach them how to assert their feelings. A few years ago, a member of the staff at his school said “stupid” to him. He came home and told me “______________ said I stupid.” So I took him with me and we sat down with this person and had a discussion. I explained to them that my son felt it was not right to be called a name. I had my son say this as well. Of course, it was denied. However, it never happened again and I asked him everyday for several months if he was called a name by anyone. I continually empower my children to seek fairness. I encourage them to accept who they are. That they may have different way of learning and communicating, and that has value. We have met many kind people who are willing to be supportive and helpful. However, I feel it is important to convey to our children that they deserve respect and kindness and teach them how to reciprocate it. To have standards of excellence and take the high road at all times. This is all possible with an attitude of determination. We must all band together to have an expectation of the change we want to see.
My journey has been quite remarkable. Nothing in my life has ever made more sense to me than to work vigorously on my children’s behalf. I’ve always said (in the case of my son) – when he was unable to articulate his needs for the first nine years of his life – that, ‘he may not be able to speak; but he certainly has a voice.’ I recognized immediately after my children’s diagnoses, what an extraordinary journey this was going to be. I knew our lives would not mirror the lives of many of our friends and acquaintances. I realized we were going to experience a lonely and difficult road ahead (sometimes excruciating). I also understood that I would have to exert measured and calculated amounts of patience, communication, strategizing and follow-through, while advocating for my children. I was prepared to accept all that, because I knew with great intuition and a tremendous sense of urgency, how precious time was and how vital it was for my beautiful children to receive early and continued intervention and support. I was not willing to shortchange maximizing their development due to anger, fear, nor lack of knowledge on my part. I knew there would always be someone who had the skills to teach me, so I could in turn, teach my children. I will be forever grateful to all who did. I am very satisfied with the relationships I have cultivated with Educators, Regional Centers, Service Providers, and others, and the successful IEP’s we have produced on my children’s behalf. This has really been the cornerstone of my children’s growth and progress. It is humbling to know with absolute certainly, my purpose on this earth. Purpose obligates us to act and has guided me to advocate for those with developmental disabilities on a daily basis. My children are an amazing, delightful, wonderful gift. I’m grateful every day that I’m able to champion their cause.