I was watching T.V. and accidentally skimmed through some sports channels (that would never happen on purpose). I actually stopped when I saw a man (an overgrown boy-child most likely) riding his bike down the mountainside and off a cliff, at which point his parachute opened and he plummeted into the ocean below. Apparently mountain biking wasn’t thrilling enough for him, he just had to add that extra oomph of sky diving. Some people call it pure stupid, but officially it’s extreme sports.
I’ve realized lately that my blogs often include graphic descriptions of my youngest daughter’s habits and issues. Not the most upbeat portrayal of one of the loves of my life. There are so many upsides to being her mom too.
When I’ve tried to explain what it is like being a special needs parent the best phrase that comes to mind is extreme parenting: we have higher highs and lower lows. We go through all the same phases and learn most of the same stuff as other kids, just at a different pace and with some unique twists along the way. Parenting my “typical” children can tie me in knots too, but everything I’ve gone through with her is more – more intense, more time, more guilt, more fear, more pressure, more celebration, more affection…
Up – She gives hugs with her whole body – head snuggled under your chin, arms tight around you with a little pat, pat on your back while her whole body relaxes right in, until you peel her off.
Down – Everything takes longer for her to learn. It is frustrating and discouraging, and that’s just me, I can’t imagine how she must feel. She has to work so much harder than everyone around her and she will never completely catch up.
Up – One of the highlights of my life is her first step. Sure, it was a long time coming (she was 3 1/2) but the celebration is worth the wait. Our whole family danced around the house laughing and cheering. Every accomplishment is a party!
Down – She will always need me. Everytime someone makes an empty nest comment I feel a little pang. Oh, I expect she will live somewhat independantly and have her own life, but she will always need hands-on parenting. She will never go to university, tour Europe with her friends or have children of her own.
Up – She will always need me. My baby will never outgrow us. I will always have unrestrained laughter, silly dances and the best hugs in the world.
Tired of boring old “normal parenting”? Sick of being just like everyone else on the block? Bring a disability into the mix and you’ll meet interesting new people (therapists, doctors, teaching assistants and more), learn new skills and become an expert researcher. You’ll learn to navigate complex government systems and you’ll get an awesome tax break (Glen likes to call B “our little tax write off”). You’ll wrestle with God; you’ll have to trust Him with your future, and hers. But best of all, you’ll realize that your child is worth every little bit of effort and more.
I’m not going to lie, if we were given the choice we would eliminate Down Syndrome from the face of the planet, both for her sake and ours. But I wouldn’t trade my girl for the world! Besides, I’ve always been a big fan of rollercoasters.
So here’s me, enjoying the ride!
So Here's Us... 
September 4th, 2011 at 5:11 pm
You are extremely awesome.
October 3rd, 2011 at 5:59 pm
This is a beautiful post. As the Mama of a teen who has Down’s Syndrome, I think you captured the big picture beautifully.
I must say however; my husband and I often whisper that it seems like our typically developed children often require our special needs extreme parenting skills more than does our special needs boy!
October 3rd, 2011 at 7:16 pm
I think you’re definitely right. All those workshops and books get used just as much on the rest of them. 🙂
One lady I talked to said now that all her children are grown it is her son with Down Syndrome who has the most content and rewarding life out of all of them. After all the worry and heartache, it’s her typcial children who struggle the most as adults. It was strangely encouraging to hear.