May 24, 2014
When Jenni was born in 1983, and having absolutely NO idea as to what having a baby with Down syndrome entailed, we depended on books for information. Some of these books were THE most frightening – and outdated- books around. I would have sworn that Moses himself had a hand in publishing the first book we read. I decided on not reading too much because Jenni was just a baby. A newborn baby for Pete’s sake, how peculiar could this sweet baby girl be on us or to society? She behaved no different than her two older siblings who were now 3 1/2years old and 19 months acted at this age. My moments of panic would subside during that easy, first year of her life. I’d slowly look for information to read on Downs, but truthfully, everything was so antiquated. Even the photos in books were something else. Many looked like they were from the turn of the century— which I think they were.
Then there would always be the person I would meet who would tell me that “They are so happy all the time and so lovable.” Thoughts of a jolly, laughing, and overly affectionate child gave me the willies which led me to some uneasy feelings. After hearing how ‘happy and lovable’ people in general who have down syndrome are (according to these strangers) I could not help but picture a nonsensical stooge. It truly gave me pause for concern. All the while as Jenni was still developing, I wondered how true these statements were. I quickly learned once Jenni was in an early infant stimulation program, that the ‘happy and lovable‘ statements weren’t quite on the mark. Some of the children had crabby dispositions and were about as lovable as a porcupine.
It had also been drilled into my psyche that “the more you put into your child, the more you’ll get out of them.” Downs or not, I beleive that THIS statement pertains to ANY child. We tried our best with all three girls, early on in their development, having them become engaged in preschool classes, or educational books and gadgets. I had Jenni in programs for speech, for motor development and music therapies. I drove her to classes 20 miles- one way- from our home 5 days a week for years. And what I noticed back then? The other kids who also had downs, marched to the beat of a different drum as well. Some excelled and spoke…..in sentences, (which I secretly prayed would be the case one day with daughter) while others, like my Jenni, lagged behind. Later on in the years that followed, we still tried new ways to help Jenni excel in her own way. And I learned again, that people with Down syndrome aren’t always happy or lovable and wanting to hug every screwball who happens upon them. Jenni has never took the initiative to hug anyone. EVER. If you do reach out to her for that hug that “all downs kids like to give‘, you’ll be pleasantly surprised when stands there like a garden gnome.
Not to pop the bubble on how sweet these individuals are (Yeah, I guess I am), I got news for you. Not all of kids with Down syndrome fit the stereotype you hear about. When I worked in special education as an assistant, I worked with a boy who had downs and he was very violent. I had more bruising on my legs and arms from that little hellion, and I wished ALL the folks who told me how happy and loveable these kids were, could walk a day in my shoes with this classroom I worked in. My daughter who now teaches in special education encounters these children daily. BUT (and it’s a BIG but), I can say I have met MORE people who have Downs with easy going and life-of-the-party personalities.
Every child, and I am talking about all children, develop at a different pace in life. I never grasped on to people’s perception that every baby born with downs was going to look alike, act alike and perform intellectually on the same playing field. We all may start out with our babies in the infant stimulation program, make it through early childhood education classes and on for another 17 more years of schooling, yet each of our kids’ progress will not be equal. And that’s OK.
There have been the ignoramus’ in recent years that ask me why Jenni doesn’t work. As I try to contain choking back the laughter, I wonder why they don’t spend ten minutes with her before asking such a question to a stranger. Had they done this, their question would be answered. So she doesn’t work, that is perfectly fine for her. Jenni is a healthy, happy, much loved, mild mannered young woman who enjoys her life as much as we enjoy and love her.
I realized a long time ago that down syndrome and snowflakes are very much alike. No two snowflakes are alike and no two individuals develop at the same rate. Even if you did follow “the more you put into them, the more you’ll get out of them” adage, there are no guarantees that your child will develop emotionally past the age of 5 or 6 years old. And that’s perfectly OK! It took me many years to accept that fact, when other parents of Jenni’s peers would make snarky remarks (you really DO meet a whole new breed of parents when you have a special needs child) as to why she doesn’t talk in sentences, or why I hadn’t tired harder with different speech therapists or why she isn’t mainstreamed into a regular high school classroom. Or why she doesn’t ride a city bus? (Would you put a kindergartner who has no verbal skills on a city bus, for the helluva it? Yeah, I had that asked of me?) Don’t get me wrong, I have met many nice, decent and understanding parents (especially in recent months), but there are some real crack-pots out there who take it upon themselves to give you advice that has absolutley NOTHING to do with your situation. I pronounce they folks as King or Queen of the Jack-asses. They have left their common sense at the door.
It’s been a long journey and what a learning experience it has been. There have been times, don’t get me wrong, where I have wondered, what if, what if things could have been a little different? And you know what? I’ve grown, emotionally ten fold, much since 1983 and have been enlightened by all the milestones, circumstances, triumps, mishaps, misfortunes and experiences I have celebrated as being Jenni’s mother. I love my unique snowflake.