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Let me start off by saying I’m not an expert on marriage. I am, however a special needs parent who is married.
Most have heard the statistic that 50% of all marriages end in divorce. Add a special needs child to that mix, and it increases to a reported 80% to 90%.
Before we married, Scott and I went to a retreat at our church which helped us understand our thoughts and expectations around hot-button issues like children, child rearing and finances. We confirmed that we had similar world views and ideals.
We never thought about the possibility of having a special needs child, or how that stress might impact our marriage.
Many parents expect to focus more on their children in those early years of diapers and late night feedings. For many special needs parents, that focus never ends, not at age 5, 15 or 25. Every moment is consumed with caregiving. It’s difficult to find respite; finding a babysitter isn’t as simple as asking the teenager next door when there are behaviors, routines, medications and special diets.
A marriage takes work. Fight. Making time. Special needs parents often find themselves exhausted, devoting all of their time and fight to caregiving and advocacy. While there’s no shortage of advice about how to strengthen a marriage, not all are realistic for those with the added complexity of having a special needs child.
Although you might not be able to jet-set for a romantic weekend, there are every-day modifications for that expert marriage advice:
- Plan for time alone together.
This sounds simple enough, right? Well, if you’re a special needs parent, finding childcare to do so can be a challenge. Here are some tips for finding and using child care:
- Actively seek respite.
Yes, formal respite services can take years to secure, but get on the list.
- In the meantime, network to find a babysitter — through your church, teacher aides, and therapy/service providers, case workers, or a service like care.com. Through Special Olympics we found that our daughter’s coach was a great fit. She was in high school, volunteered to wake up early on weekend mornings to actively coach kids with special needs, and we got to see her interaction with Natalie over 4 months (she’s awesome).
- Still not sure a babysitter will work? Try having a babysitter for a couple of hours while you’re home. This may sound silly, but we’ve done this. It allowed us to make sure that Natalie would really be OK with the caregiver, and also to make sure that the babysitter we found could handle a couple of hours alone with Nats.This can allow for tasks that often get set aside, like cleaning out the basement, or for some uninterrupted time to just talk in the backyard. You’ll be able to focus on your partner with the peace of mind that you’re close by just in case.
When finding childcare isn’t an option, finding time may mean small chunks of time to focus on one another:
2. Cook dinner together. Give your kids that coveted tablet time for that 20 to 30 minutes within eye and ear shot of the kitchen. I don’t know about you, but my kid *loves* her tablet time – so much so that we have to set limits. She’ll sit quietly on the couch, completely enthralled by those Play-doh videos on the screen (yep, the same ones she’s watched a thousand times). We can try a new recipe, or just have the time to talk while we heat up the same GFCF chicken nuggets she’s eaten every night for the last… Week? Month? Year? We’ve lost count.
3. Play a game. A little competition can be fun. Make sure it’s high-stakes — you know, loser has to do the dishes for a week, watch the kids while you take an uninterrupted shower, or get up with the kids on Saturday. At 5 am. Because their internal clocks tell them that we live on a farm.
4. Keep your sense of humor. It’s OK to laugh about your situation or poke a little fun at it. Creating those ‘inside jokes’ can draw you and your partner closer.
5. Notice the small things. I actively appreciate the small ways my husband shows me he cares. Working nights, he’ll often pick up necessities from the grocery store on his way home from work. He gets to skip the crowds, and I don’t have to drag the kids along for an errand that they hate.
6. Invite another special needs family over. My daughter has been in school with many of the same kids since kindergarten. We’ve gotten to know many of the parents over the years. We love that the kids get to interact socially (whatever form that takes), and there is never a need to apologize (we all “get it.”) There’s something comforting about connecting with other parents – knowing you’re not the only ones going through this special needs life.
7. Take care of yourself. This is a tough one. As caregivers we don’t always take time (or have time) to focus on ourselves. Sometimes, it’s as simple as asking Scott to let me take an uninterrupted bath or shower, or for me to make sure the kids don’t wake him at 7 am on a Saturday after he’s worked all night.
8. Intimacy. The experts say ‘schedule sex on the calendar’ but it’s the unschedule-able needs of our kiddo that doesn’t allow for that. We never know when she’s going to have a bad night and need our support, or sometimes the exhaustion trumps staying awake for one more minute. Seize those moments when you’re alone. Have a lock for the bedroom door. Remember that intimacy can be about those small stolen moments, and won’t always look like romance as portrayed in the movies. Don’t beat yourselves up for wanting a good night’s sleep, especially when you’ve just won that high-stakes game of scrabble.