Special Needs Now

Respite Time for Parents: Something We All Need!

One mom of a child with special needs discusses the benefits of a respite trip she and her husband recently took.

Lyn Jones and husband Jim Lyn Jones and husband Jim on their recent respite trip. Photo provided by Lyn Jones.
Respite, or time away from your kids to rest, recharge, and re-center, is such a necessary part of parenting any child, and it's especially important when parenting a child with special needs. My son Liam, a 7-year-old with autism, is a joyful, high-energy child, but caring for him brings a set of unique and exhausting challenges. He doesn't sleep much; he struggles to communicate, which can make him act out in frustration; and his interests are still growing, so it's often hard to keep him occupied.

For the last five years, my husband and I relied on family members, Liam's team of therapists, and trusted babysitters to give us a quick break, a night out, or even a whole weekend to ourselves. And then we moved 2,000 miles away from all our family and support networks, and we've been without respite for the last three months. It's been really tough, and both of us need a break from the demands of caregiving.

As I was thinking through our own struggles, I reached out to my friend Lyn Jones, writer, teacher, and mom to Will, a 12-year-old with autism and cerebral palsy. Lyn and her husband Jim just got back from a Caregifted respite trip, which took them to the Pacific Northwest. Gone for a week, they spent the time whale watching, enjoying each other's company, and resting from the demands of their life.

Here's what she had to say about the trip:

How did you get nominated for this trip?

Two years ago, I wrote a blog and was contacted by Caregifted. They mentioned that I should consider applying for a respite trip. I started the application process and then stopped it because we found out Will had to have surgery, so we did nothing for a year. Then, at the beginning of this summer, after a very hard six months, I thought "I'm going to reapply."

You can apply yourself or someone else can apply for you (like a social worker or therapist or family member or doctor). The application is lengthy and requires a doctor's letter and information. Will's ortho surgeon happily complied. We got a call in late July saying we were granted! They only gave us three one-week options and none were ideal for folks who teach, but we picked one and I was determined to make it happen. I knew that if Jim and I could go, could make this work, then perhaps we would be brave enough to take another long trip. We traveled a lot before Will was born and we both really miss it.

I think leaving Liam for so long and trusting he'd be ok would be one of the hardest parts for me. Were you worried about leaving Will?

Yes. I was terrified, although we have a team of incredibly competent, wonderful people. This was the longest we had ever been away from Will and we were so far away—if his pump failed, if something urgent happened, it would take us an entire day to get back. I was so nervous, I threw up my first day of the trip, but at about day three, I settled.

How did Will do without you?

He was fine, but he was always looking for us and was happy to see us when we got back. He likes and needs his routine.

will and jim jones Will (left) and dad Jim Jones. Photo provided by the Jones family.

What did Caregifted actually give you—hotel and plane tickets or did they pay for caregiving?

They covered the flight, hotel, a couple's massage, provided a $500 stipend for food, and a member of the nonprofit who lives there took us out one evening and paid for that meal and she paid for an excursion to whale watch. They also loaded our fridge with some welcome food and wine. We had to pay for the caregiving for Will. Our respite nursing (from our state) covered half, but we ended up paying $1,500 out of pocket for the other caregivers for Will, and of course we purchased items there and we had to pay for those.

What were some of the highlights of the trip?

We enjoyed staying in a residential area in a hotel/condo complex where we could have a living room and kitchen and just really unpack and hang. We love the Pacific Northwest, so we loved walking, hiking, going out to eat, and taking in a new place. We had an incredible whale watching excursion—4 hours in a beautiful landscape and we saw five orcas and two humpbacks. I also loved being able to reconnect to Jim. All we had to do was take care of each other, and we needed that. It wasn't all about Will for a week—it was about us. It was a much-needed reminder of how good we are together.

lyn and jim jones Lyn and Jim relaxed by the water during their respite. Photo provided by Lyn Jones.

Do you recommend this for other parents?

Yes, yes, yes. This sort of week-long respite is like Make-a-Wish for parents. I wish more people would do something like this on a smaller scale. Offer to take someone's child so they can get away for a weekend. Or give them a trip for a weekend or a night at a hotel. This is what parents need!

Ready for a respite? Learn more about Caregifted at Caregifted.org, or visit the National Respite and Network and Resource Center to explore what's available in your area.

Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her atwww.jamiepacton.comFacebook (Jamie Pacton), and Twitter @jamiepacton.

Understanding Autism: Sensory Issues