Most of us caring for one with special needs have to say “no” to a lot. Recalling days on end as a young mom, I remember barely coming up for air from treading the waters of life that engulfed me. It was never ending:
- 2 more (beautiful and lovely) children (daughters)
- And on and on it goes!
During some seasons of our life, we had (what seemed to be) no free time whatsoever. And other times, some. Sometimes whatever free time there was needed to be for errands and catching up. Can you relate? The “luxury” of free time (sleeping in, vacationing, time with adult friends, outings, etc.) was somewhat non-existent. Everything we did for ourselves we had to do for our son, so we were busy with that type of care.
We had wonderful parents (Joey’s grandparents) and now my sister Sue, who’ll care for him while we get out or get away, but not everyone has that support. And even with the luxury of wonderful folks and a sister who have graciously helped us, there have been times when we’ve had to “just say, no!” Often, Joe and I have to decline a last minute invitation to dinner with friends (who are now empty-nesters) because we can’t leave Joey home alone for that length of time. Even as I write, Joe and I will plan to go out this evening, but Joey will need to join us. We don’t mind, but sometimes, a date alone or time out just the two of us is really special and…..needed!
We’ve come to grips with the kind of care we need to give and the issue of free time in a few ways. Maybe a few of these will scratch you where you itch today on your journey:
- Ask for help. Sometimes we need to ask for help: from a volunteer, family member, or hired caregiver. I know it’s hard to ask. But ask. (And always say “thank you” and show appreciation!)
- Divide and conquer: If we’re married we need to “take turns!” Joe gets to do something for his free time and another time I get to.
- Recharge. Find a spot in your back yard where you can sit. Alone. With your spouse. With a friend. You pick! But while your child is sleeping, take time to do something that “fills you up” and recharges you. You are not allowed to choose the needy friend, unless they know when to give you your time to be needy. Find someone who makes you laugh and yet with whom you can share your heart.
Some of these things take a long time to get the guts to do or courage to explore. It takes time and some trial and error. But, if you don’t try to make it happen, it won’t. No one reads our minds. Others can’t know our needs and how to fulfill them for us. People are generally happy to help especially if they are appreciated, so find those rare gems!
And realize, that in various seasons of life, free time is different. It’s only taken 25-35 years for Joe and I to get to take walks together in our neighborhood. Our son is almost 35 and is able to listen to music, watch a movie, and play his video games on his own – it took lots of training. And if we have him fully fed, toileted, showered, and teeth brushed, he will often find his way to bed on his own after he’s exhausted all his amusements! It might be 6:30 PM. He might leave all the lights, tv, music, and DVD’s going, but he’s in bed and we’ve had a little “free time” that we got to say “YES” to. It didn’t happen overnight. But it happened.
Just say “no” for now – but here’s to looking forward to that season for you when you can say, YES!