The Fear of the Future

One thing that seems to be consistent among parents with children on the spectrum (heck, with all parents!) is fear for what the future will hold. While we battle school systems, the medical system, and bureaucracies to get what our children need, we also must project into the future and try to equip our children with the tools they need to succeed or to set in place the environments that will protect them and allow them to have a good life. 

Unfortunately, sometimes the real-time struggles are so time-demanding that parents don't have the opportunity to work towards that day when their disabled children are adults, and even when they do, and they work to move heaven and earth, it doesn't always work out as planned.

I can understand the fear for the future, although there are some things that I cannot relate to. I've read parents who fear when their child ages out of the educational system and what they will do, and that's not something I dealt with, as we homeschooled Bobby from the age of nine. And it's not something I'm going to worry about with the girls, because even though they are on the spectrum, they won't be in the educational system till 21. I anticipate and plan that they'll be out of the school system before they enter high school. It'll be for different reasons than it was for Bobby; the girls are well-equipped and should be able to start college part-time in their earlier teen years.

The future is unknown, and even when we construct elaborate, detailed plans and do our best to make them happen, the truth is that the future is out of our control. All we can do is plan, plan some more, make contingency plans, be flexible, revise our plans, and work hard NOW to arm our children with the tools they'll need to be as autonomous as possible. 

We should also be prepared to yield our authority and our control over to our adult children and allow them to make their own decisions as much as possible. We should work together. Bobby is now 22 and he's increased his time in the kitchen at Meals on Wheels to five days a week, and starting next week, he'll get there earlier so that he is volunteering 40 hours a week. It's something we've discussed and worked towards together. We've done it with no governmental interference or assistance, with no job coach. We've done it together, on our own. We've been lucky that the kitchen staff are kind and care for Bobby and welcomed him there. It's Bobby's hope and ours that someday these years of volunteering and learning how to interact in the real-world job setting will lead to a paid position in a kitchen, either there or elsewhere. It may not happen; that is beyond our control; it's still worth working hard for.

What is not beyond our control is the effort we make to ready him for independence (or semi-independence). What is not beyond our control is slowly loosening our hold and allowing him to make these decisions with our support and blessing. 

Bobby still struggles. He has a hard time remembering names. He has a hard time communicating clearly the chain of events or what other people said or did. His sense of time is still really, really different. We keep working on it. He keeps working on it. And that, in the end, is what's really important: that we continue together to work on attaining new skills, to improving our abilities to relate to each other and to navigating this scary world where anything can happen.


usethebrainsgodgiveyou said...

Oh,man, I love Bobby posts. I am so happy for him...40 hours! Ben also volunteers, about 8 hours a week in a mechanical shop (works on "trains"--what a surprise!) and is so supported by the people he works with. Sometimes we just gotta trust in the goodness of people to help our children along the way.

But Ben, like Bobby, I'm sure, needs a supportive environment that encourages his independence.

It's like you are raising your son the old fashioned way--on a wing and a prayer, ha! And like in the old days, if it doesn't turn out there is no one else to blame.

I like where this post goes.

K Wombles said...

Thanks. Yes, that's absolutely the way I see it--we do our job and if it doesn't work out, it's not anyone else's fault. The responsibility (overall, even when delegated), remains mine and Rick's. When Bobby was little, I realized no one was going to care as much as we did, and our best chances and his best chances, were for us to be the ones accountable. I feel the same way about the girlies. I rely on the school to help us, but in the end the responsibility is ours.

Bobby's excited about being there all five days. And because he's shifting to full-time volunteering, we're shifting his responsibilities at home, as well, and requiring that the girls get more involved in the day-to-day running of the household.

farmwifetwo said...

We've had this discussion many times before and have the same opinion.

It is OUR job to do these things.

I'm behind you and hoping for the same outcome of my youngest. My eldest will be independant of us.

I'm using Bobby as a goal for Russ... incentive on those crappy days and a reminder "we're not suppose to be here and look where we are and where we can go".

melbo said...

This is a great post - you are right that fear for the future is common to all parents but can be especially acute when the kids have special needs.

Bobby's volunteer work sounds great and I really hope it leads to a paid gig for him.

Dixie Sargent Redmond said...

So glad for Bobby's accomplishments.

For some reason, I felt a bit...sensitive about this post. There may be other kids and parents who have worked hard but have not had similar results. Sometimes things don't go as we planned and it's not anyone's fault. Is there an implication that if you don't meet a certain level of success you didn't try hard enough?

I don't mean this to take away from Bobby's accomplishments at all, or your commitment to your children. Kudos to you and Bobby.

K Wombles said...

No, I don't think there is an implication that parents didn't try hard enough.

We could flip this around and rather than looking at what he's accomplished, focus on his difficulties. For example, Bobby can only spell at best at a first grade level. Simple words elude him. His ability to hold the letter or number in his mind long enough to write it down when you spell or give him a number is extremely limited and it can take several minutes for a phone number or a short word. He really can't hold onto names, either. He has no idea if something happened last week or several years ago.

Is it his fault or mine because these impairments remain? No. The stroke and his autism and intellectual disability all combine to make his impairments significant.

I think my conclusion sums up the piece exactly the way I feel: it isn't how far we go, but how we work to learn and grow: "We keep working on it. He keeps working on it. And that, in the end, is what's really important: that we continue together to work on attaining new skills, to improving our abilities to relate to each other and to navigating this scary world where anything can happen."

farmwifetwo said...

It's the idea that I was trying to get across on Susan's blog that we should presume "ability". I find many therapists, Dr's and teachers pedal "inability" instead of "possible". They get you on the hook for fancy therapies and forget about the basics "independance, communication, and learning". All of these things mean different things for different people. Parents are lead to believe that they personally cannot make a difference and when their children don't learn per the therapy model they are "severely ID" and "uneducatable".

Everyone learns and grows up. Depends if you want them "trained" or "taught". IMO "taught" is more important and the child becomes and adult with skills that meet their abilities and more... than unflexible therapies of rote learning.

usethebrainsgodgiveyou said...

Dixie, I used to worry and cry myself to sleep most nights, and attempt to get the latest and greatest therapies. I made myself sick.

You just hit a time when you think...I'm too tired to do this anymore and I "hope" he turns out okay!

I dunno, maybe it's kinda like replacing fear with hope, and not looking back.

emma said...

Hi, just popped over from TherExtras :).

Maybe I'm wrong but I thought Dixie was referring to finding the right place and people, such as where Bobby is volunteering, rather than reaching specific developmental goals?

In my (befuddled)brain it occurs to me that all parents are different too, and we don't all share the same set of skills. It occurs to me because my own skills at communicating and negotiating with others are pretty rubbish:) - and I always feel like crap when others tell me what you can achieve in terms of integration, social groups, "microboards" or whatever - if you try hard enough...

I do actually agree with what you've written though, and we keep trying of course!