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"I did not always do so well. But I tried." - Parenting young, community, and raising a special needs child.

By margo - Posted on 20 September 2013

This blog entry was written by a contributor who would like to remain anonymous.

Sometimes when I hear about the work that YPSN is doing, I am so proud and pleased that this program exists for young parents who need support. On the other hand, sometimes I want to scream and cry, “Where the hell were these programs when I needed them? Where were all these nice people?”

That was such a long time ago, back in the ‘70s. I’ve buried most of the memories. I was 18 years old when I became pregnant with my first child. I was unmarried and didn’t know very much about the world or life in general. I was in a bind, confused, and didn’t have anywhere to turn to for help and advice. My father was a religious person, and in his reality, hell or heaven were the only two options that one faced, and I never doubted that for me it would be hell. I was certain that I would not receive the support that I needed in order to get through this in a way that was good for me. I was close to my mother but she was dying of cancer, how could I burden her with this? She did what she could while I was pregnant, but she died shortly after the birth. I was just plain scared.

So I did what I felt I had to do. I married the father. My son was born with Downs Syndrome and an inoperable heart condition. Now, there was fodder for older, judgmental parents; not only was I too young to have a child, I had a special needs child. They shook their heads and sometimes ridiculed.

When it came to congenital heart disease, I had no choice but to depend on the pediatric cardiologist. The internet was not yet in existence. I had so much to learn but they resented my questions, to them it signified a lack of trust. Sometimes they would just get up and walk away leaving me sit there unanswered. I was insatiable. I worried constantly whether my son was getting good health care. Other moms seemed to enjoy planting doubt in my mind about doctors providing good care. (Even if they could operate, would they use their time and resources to do so, given that he has Downs Syndrome and, in their opinion, has no contribution to make to society?) I was always unsure and scared for my son. I doubted my ability to be a good mom. If I was a good mom, wouldn`t I always know what to do?

The other option was to give him up. In the early 1970s, children with Downs Syndrome were not adopted into good homes, they were delivered to institutions. I was told they were happy there because it was the only life they knew. The obstetrician encouraged me to take him home and love him.

"They do so much better at home" he said.

His father was disappointed in him and became angry a lot. I had no choice but to shut out the world in order to survive and do my best. I did not always do so well. But I tried.

YPSN, if you ever have any doubts about the work that you are doing, don`t. Please be as visible as possible so that young parents know where they can turn when they feel lost. The work that you are doing at YPSN is phenomenal. I wish you had been there for me.