I am a husband, father, son, brother, uncle and friend. I believe in sharing my talents and experiences by giving back to the community by giving my time to coaching, church and especially to the disability community. I truly believe that all men and women are created equally.
As we were discussing a strategy for Wisconsin Families Forward, the conversation turned to talking about the struggles that individuals and families face on a daily basis.
A couple of weeks ago, I spoke to the Men's Club at Nativity of the Lord Parish. I was asked to talk about what it is like to raise a child with a disability. As I prepared for the talk, I reflected on the stuggles that we have faced. I think that I have only told a couple of friends once each about the struggles that I have faced. I don't like to focus on the struggles, I believe that my son's cup is half full, not half empty.
The first struggle was with bed side manner. Immediately after Tyler was born, the doctor came into the romm and told my wife that "she should not expect much out of life for him." Not exactly the way first time parents expect to start their new lives.
A second struggle has been with discrimination. Shortly after my son was born, we received a letter stating they someone saw our son's picture and they wanted to talk to us about our son being in some print ads.This was something that helped with the uncertainty we faced. As my wife prepared Tyler for the meeting, he was ready before she was, I brought him down stairs to meet the agency rep . The guy immediately asked what was wrong with his eyes. I told him that my son had Down synrome, the guy immediately said that "we don;t take kids like that." I gave the guy two choices, he can leave now and I will tell my wife or he could find a better way to out it. I told him that if I was not happy with how he explained it to my wife, I would throw him out.
A third struggle is the medical field in general. For a couple of years, Tyler would have crying spells and bang his head on the floor, out of the blue. Since Tyler is non-verbal, it was difficult for us to figure out what was wrong. On more than one occasion, doctors would tell us it was a Down syndrome thing, but as parents, we knew our son was in pain. After a couple of years, it was found that my son had cronic constipation.
These are just 3 of our struggles. Individuals and families across Wisconsin all face some sorts of struggles, just because you do not hear about them does not mean that they do not exist. It is through the Long-term waiver programs that individuals and families get some of the help they need to allow for a higher quality of life.