The Tough Get Going

Photo Credit johnharveytolson flickr

I rarely complain about having a child with Down syndrome and special needs.  It's our normal day-to-day.  It's been a journey getting to this point because I definitely felt worthy of indignation and self-pity in the early days and months of Bear's life.  But if I've learned anything from being part of a special needs community, there are families who have far greater challenges than we've faced.  Kids who face severe health concerns, parents who make the journey alone because a spouse couldn't shoulder the weight of raising a child with special needs, and those who lack extended family and friends to support them.  We are truly blessed to have a healthy and bright little boy, a loving marriage based on a solid best friendship, and family, church family, and friends who are like family who love and support us.  So I've come a long way and measure my life as a blessed one, not a burdened one.

However.

Yep, there's the big "however."  Here recently, Bear has been a CHALLENGE.  Though he's four-and-a-half-years-old, developmentally, he's a bit more like a two-and-a-half-year-old.  Which is TOUGH.  His big boy body doesn't seem to sense danger and has no healthy fear for our warnings and reprimands.  Where our daughters will respond to our chiding, Bear conveniently ignores it and continues his negative behaviors, which are sometimes dangerous.   

Examples:

• Girls will play on the deck and sandbox in our backyard for HOURS.  I can do dishes and some household tasks while keeping an eye on them through our windows and screen door.  Bear will take off down the stairs and around to the front of the house and busy road.
• Girls will "work" beside me in the flower bed and dig through my gardening tools in the garage.  Bear will hop on his hot wheels trike and fly down the driveway like a bat out of hell.
• Girls will eventually keep their hands off things they're not supposed to touch.  Bear will grab a knife on the counter and wave it around while beaming a proud face that says, "Look what I've got!"
  
• At a park and playground, girls will play on the equipment and stay within the appropriate boundaries of the park.  Bear will jet off on a running path (and the little booger is now able to run!), leaving me scrambling for the girls while trying to chase him down.

And some people try to reassure us he's just being a boy, but to those people, I'd like to offer them an opportunity to spend 24:7 w/ Bear before they assure us he's just being a boy.  Dan and I have literally been pulling our hair out, as were his teachers at school the past few months.  We worked together to start a new discipline program (1-2-3 Magic), but it only seems to work its "magic" part of the time.  While we've seen some improvement in his behavior, there are days we fear that he'll never outgrow this.  Will we ever be able to vacation for fear that Bear will just jump off a steep mountainous cliff, or run headlong for a raging ocean, or worse yet, in his meanderings be harmed by a stranger?

One of the beautiful things about raising a child with developmental delays is that every stage lasts longer, so though I had a baby stage that lasted for two years, this wicked little toddler stage just might kill me.  These are the days when I hear those lies whispering how nice it would be to have a "normal" family and a "normal" toddler who eventually listens and responds to discipline and that it's never going to get better and woe is me.  So these are the days, family and friends, that we need you to pull us up and assure us that it does get better.  We KNOW in our souls how special our little man is and what sheer love and joy he has brought to our lives; we don't need to be reassured of that.  But you know what they say: when the going gets tough...