On being a Mom of a Child with Special Needs.

Simply in choosing the title for this blog, I had to change it, because the first one was not PC. Desirae is not a "special needs kid", she is a "child with special needs". I'm pretty darn relaxed about the "language" and have caught heck for it more than once from other mom's of children with special needs. We learn that we don't have Down syndrome kids, but kids with DS. We don't use the word "retarded", but "mentally challenged". I've heard "mentally disabled" and object to that term, even though it's PC. When something is retarded, it means that it's slow. When something has been disabled, it doesn't work anymore. The new language doesn't always make sense to me.

Desirae has Downs Syndrome. It's also called Trisomy 21. She has an extra chromosome on the 21st set. There are many chromosomal abnormalities children can be born with, and Trisomy 21 is just one of them. It's not caused by smoking, drinking, or drugs during pregnancy. It is genetic, the luck of the draw, and the odds go up for older mothers. I was 41 when Desi was born. I grew up having a family friend with DS. It was speculated that it was because the mother smoked. We were so uneducated about this condition. We used the term "Mongoloid". Today, people gasp at that term. I don't. Some perfectly lovely people have told me what an angel my daughter is, and then went on to ask if she was a Mongoloid. How can you get angry at people who would refer to her as an angel, but be uneducated in the terminology of Downs Syndrome? So I struggle with being PC, because I know it's what the Downs Syndrome community seeks, but it's not high on my list of importance.

What is high on my list of importance is Acceptance by the community, and better education, more opportunities, more genetic research, etc. I recall parenting my son, who is almost 20 now. It's heart breaking when your normal child is left out. But, it's normal for a special needs child to be left out. My heroes are the people who remember to include my daughter and others like her. Those who might go out of their way to make her day. It happens more often than not, and usually by perfect strangers. I thank God for human Angels! It's not something you notice unless you are very close to a person with a disability. Some people look away because they are uncomfortable. When pictures are taken and posted, it's often that pictures of my daughter are not included. But on the other hand, the special attention she gets from certain individuals more than makes up for the ignorance of a few. Most of our interactions with others are positive and healthy. But, as she gets older, the negative interactions are increasing. Other older children have been seen rolling their eyes in response to her. I think it's sad that some parents don't use the moment to teach acceptance and tolerance.

I am grateful to have had a person with DS in my past. I was not afraid of the diagnosis too much. I had compassion for people with this condition. And I had taught my son to be compassionate to those less fortunate in all areas. However, what I am learning about myself sometimes, is not the prettiest. I've always put much emphasis on knowledge. The capacity for learning is bestowed by God, just like being pretty, or healthy, or strong, or tall or thin. I've had to face a prejudice in myself in this area, and I'm learning new stuff about accepting ALL others who are not the brightest people one might know.

I'm learning about "innocence". My daughter does some things that could be characterized as "defiant". "Don't get into Mommy's jewelry" and she does, and she's been told over and over and does it anyway. Along the same lines are "Don't touch the hot stove" and she does, and she gets burned even though she's been told over and over. And then, there's dog poop...."don't step in it", and she does, even though she's been told over and over. When you link all these things together, you figure out that getting into Mommy's jewelry is exactly the same as burning herself or stepping in dog poop. She just doesn't get it----yet. This has been a huge lesson for me who believes that every one does something for a reason or a pay off. The reason for touching the hot stove is curiosity. The pay off is getting burned? Logic doesn't apply! Consequently, I find it difficult to punish "childish things". So, I tend to reserve punishment for endangering herself or others. She loves to pick up her little cousin, and finds herself in time out. She runs away and gets a smack on the bottom. I've heard that "she plays you" and I'm learning when I'm being played and when I'm not. Now that she's 5, it's getting easier to tell the difference. I ignore her when I think the tears and complaining are not real.

But mostly, she's a very joyful person to be around. She adores other children. She gives great hugs. She is not shy. She loves to Party. Yesterday we attended a graduation party for a family member and today has been filled with her memories of yesterday. "It's Party time!" in her own words, because her parents are too old to say those words anymore. And we even heard yesterday that "it's Uncle Barry Time!". Her uncle is head injured and his capacity for knowledge is not great either. I'm thankful that because of my daughter, I can apply tolerance to her uncle as well. I'm hoping to be able to take this a step further to all of humanity....like the people who ride their bikes on the wrong side of the road....or the driver of the car who puts on his right blinker and makes a left turn. The lessons are great when you tune into people like my daughter, and the most wonderful people I know are the ones who see the worth in every child.