Spinning My Wheels

I think it’s only natural, when you have a child with special needs, to think and plan for a different kind of future.

I’ve been around my house just casually assessing–trying to figure out which areas aren’t handicap accessible. We’ve figured out a short-range plan that includes turning our tiny master bath with a tub into one with a walk-in shower. We would also need to put a ramp on our back porch because our house is raised off the ground (it is Louisiana). We’ve got long-range plans where we could create a suite for Charlie should he be living with us into adulthood. They’re building a facility for handicapped adults about five minutes from our home, so that’s also in there somewhere as a possibility.

But you know, all of this thinking and planning is basically useless. It’s like trying to decide how to spend my lottery winnings (First, I’d pay off the house–NO!–first I’d set up a trust for Charlie–NO!–screw that, I’m going straight for the shoes). No one knows what Charlie will do or say or be. And really, no parent knows what will happen to their child. Your friends down the street who are wondering how they’re gonna pay to send Sarah to Brown? Well, for all they know, Sarah will get knocked up at eighteen, marry the guy, and live happily ever after never attending a single day of college. And there are better and worse scenarios than that one. Point is, we can’t predict the future. We can’t know what’s going to happen.

So if I get a little upset thinking it isn’t fair that I have to plan for a handicapped future, I remind myself that what I’m doing isn’t all that different from what other parents do: We hedge our bets, hope for the best, and try to love our kids the best way we know how.

The rest is out of our hands.
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  1. You are absolutely right. I'm naturally a worrier so I really do try to take it "one day at a time" or I get overwhelmed. My husband is very big on saving for adam's college account already… in theory it's a great idea, but like you said… you just never know what's going to happen… there are certainly no guarantees. the most i'll plan ahead is a few months (except for vacations, of course — need something to look forward to, right)! some people (including my husband) thinks this is not too bright… but it is what works for me.

    cute pictures, by the way!

  2. Small Town Girl says:

    How very true! Isn't that true for ALL of us in life, though? Plan all you want, but it's going to come down to LIFE eventually.

    I'm sure you know this, but when you make that ramp for Charlie make sure you make it long enough and gradual enough so it's easier to get him up it. I have a ramp (which was on the house when I bought it) that looks like it shouldn't be a problem, but when I attempted to push my uncle up it I almost lost him…he had to grab on.

  3. I was going to blog on the SAME thing today. Great minds think alike, and I agree 100%.

  4. therextras says:

    Ours were a not much older than Charlie when we started planning to change the house so they did not have to share a bathroom as teens (boy and girl). Like you said, not all that different from what other parents do.

    The kinds of baths that make things easier for persons with disabilities work for those who do not have special needs. So if you are gonna change a bath, why not make it universally accessible anyway? (Personally, I think it makes a good investment for resale – you know – when you retire and take-off in the rv).

    And while ramps are not universally needed, like STG said – persons on the other end of life often benefit from easier access.

    I know you will make your home comfortable for your family, in the timing that is comfortable for your family.

  5. Wherever HE Leads We'll Go says:

    So very true. None of us knows what will happen tomorrow, never mind 10 or 20 years from now. I don't think there is any harm in making plans as long as we know they are loose plans and can be changed at any point. Flexibility is key for any parent!

  6. Very good point. Of course, imagining the various possibilities isn't completely useless…because at least you'll be prepared no matter what happens–nothing will really catch you off guard. As long as you're able to put away money for Charlie's needs regardless of what they me, you'll be ready when he finally shows you who he will be.

  7. Swistle says:

    Whoa. Dude. This kind of blew my mind.

  8. Nathan Charlan says:

    Wow… this really hit home. Renee and I are in the stages of just trying to fix up our home for resale because there is just no way to make it any kind of handicap accessible. It's a '70s style tri-level. HA! Try making that handicap accessible – might as well apply for Extreme Home Makeover. We just had a tornado storm rip through so we'll be updating a lot of the outside through insurance claim. But we will have to put it on the market in the next year and find a ranch to move to. We ordered a wheelchair for Zach. Right now, to get to our front door you have to go up a set of porch steps. I definitely feel what you're expressing in this blog. Real estate market is down for us to sell and we don't have any money to risk not making any money off the sale. So… we're stuck at the moment knowing our house is definitely not equipped nor could ever be even with the best modifications. I wish you the best on yours!

  9. desperate housewife says:

    This is so so so true. Your words resonated with me deeply. I am always wondering, late at night, "How will we handle another baby? And what if it's TWINS? How will I handle bedrest, a c-section, nursing? How will the other two adjust? Where will we put all the STUFF? We will have to move, there's just no way around it, and OMG we can't afford to right now, and ahhh!" The logistics blow my mind. But you're right. We don't know exactly what's going to happen in any situation, be it a year from now or ten years from now. We don't know what our kids and our family are going to need at any given time. All we can do is make the best decisions for each day that comes at us. And know that we are not, ultimately, the ones in control.

  10. Nadine Hightower says:

    You're right in thinking ahead. You have to do that.

    For Charlie.
    And for your own peace of mind.