This is what it’s like to live with Down Syndrome
It is all too easy to make our children “projects.” That bodes even stronger for special needs kids. There’s always a skill to develop: walking, eating, speaking, fine motor skills, gross motor skills, reading, writing, social cues, social graces, bowel control, bladder control, and as the kids grow, so too does the list. Sign up for another class; throw in some more therapy. Tried yoga yet? What you don’t take him swimming? A flash at the week’s schedule and I see my life passing before me: A tired mother with a lot of miles to show on the speedometer. Does this theory work?
What I know about science could hang off key chain. Unraveling String Theory makes me dizzy, almost nauseas. Back up a few brain cells, and I’m still unsure about the theories I was just so darned positive about. My friend told me the “new” thought was to feed infants at four months when we just got most of society back to the idea that breastfeeding was good and food was bad until six months. Another one I’ve heard is that now we shouldn’t teach sign language to kid’s with speech or cognitive problems because then they won’t choose to speak because signing is easier. Oh heck. Amidst all this tossing around of intelligent ideas, I go home. Literally. I go home.
Home is where I sort it out. Home is where I watch Addison, and his older sister, in the hopes of unraveling a few ideas that work for us. We’re all a bit naive to believe that one theory works for everyone across the line. Just like the “new” study says we should be catering diets to our own body types. Duh?? We need studies for this? I think we’ve rambled too far from our own instincts and trust too many experts - some of whom are wound tighter than a Swiss watch - with OUR lives. Getting lost in what to do detracts from grounding life in, well, LIFE.
Human development is super, super complicated. Yesterday, I watched Addison struggle to stand up and play with a key that was dangling from a door. He wondered in all it’s movement and sounds. I could almost here the little brain neurons recording the experience and cataloging everything away for later use. These hundreds of tiny moments are what I file in my brain to more deeply understand the development of my son. And with the big picture of our little lives, I make decisions from that platform. On top of all this, there is my health and well-being. Being a parent to a special needs child is only a fraction of my SELF. Right now, it eats up a great chunk of my time, and I battle for my time alone like a soldier in the Revolution charging up Bunker Hill. But a balanced parent could be more important than any swimming or yoga or music class for Addison or his sister.
So on those days we have no where to go, no projects to tackle, and no class to attend, I relax in the tiny moments that could possibly be the most important things in our lives; it could be LIFE. My children are little souls first, and I try to greet each moment with as much joy and calmness as I can. I’m betting that’s one theory that will hold.



fortunecookie on 18 Jul 2008 at 5:30 pm #
Sing it sister. If I had a dollar for every well intentioned person who saw the special on CNN about autism and offered advice, well I would have close to 100 bucks. I had a really tough couple days and its nice have company sometimes. Glad to see you all made it back safe and sound.
Rickismom on 19 Jul 2008 at 1:00 pm #
Studies CAN be helpfull. For example, the studies that Down’s Ed of England has made (on more than 100 children with Down S over more than 10 years) have given us a much better idea of WHAT works.
Obviously, something that interests YOUR child will work better than sometning he is not interested in.
As for therapies, you do what you can, taking in consideration the amount of time/money/ will that you have. I know that I chose NOT to take Ricki (has Down S + ADHD) to swimming therapy when she was a young child. Now at age 13 I am taking her to learn to swim.
Susan on 19 Jul 2008 at 3:29 pm #
Amen and back again. Thanks for the comments.
I love the company too.
I really appreciate it.
We do what we can.
And a little more.