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“… and a side order of empty-nest soup, please”

July 17, 2011 By Leave a Comment

Jim and I just returned Thursday from a 5-day cruise without our precious boy. Dan turned 17 on July 5th while he was cruisin’ with Frontier Travel Camp and we are going to pick him up in New Jersey on Saturday.

Our cruise was a mixed blessing. It’s not so much what we did on the cruise that made it great: it’s what we didn’t do that made it great. We didn’t have to entertain Dan or worry about him spending too much time in the arcade.  I didn’t do a single load of laundry. I didn’t make the bed. I didn’t cook. I wasn’t subjected to “What’s for breakfast/lunch/dinner?” every single meal for the entire week.

But on the other hand, my boy is gone - a foretaste of the empty nest we will experience when he leaves high school in 2 years. This week’s vacation from autism is a little different from the next one in October: he will be gone for a 10-day Postsecondary Education Rehabilitation Transition Program in VA while I am home every day, working at his high school (I’m off for the summer). Being on a cruise was pretty great. But being home, living my normal everyday working life without my son? The empty-nest soup might not be so tasty.

Still, I’m so very thankful for the respite, and for the man who has loved me for almost 25 years, and who will still be here when Dan is gone.

Peggy

 

Filed Under: Autism, Marriage, Parenting, Respite Tagged With: , , ,

Mouse, on my mind

February 27, 2011 By 6 Comments

I am very excited to be a new blogger with Chosen Families!  I should probably start out with a nice introduction but for now…I’ve got Mickey on my mind.  My niece just received her new nametag from the mouse, himself.  She’s a college student and doing an internship there this semester.

You could say I’m affectionate for Mickey…  :o )

I never met Mickey as a child, nor any of his friends.  But when I met him at age 29, along with my children – I felt like a child.  I was full of wonder and excitement.  But I also had the wisdom of an adult… I practically shed tears because I just felt so happy and fortunate to be experiencing this and sharing it with my children.  Since that first visit a few years ago, we’ve been back another couple times.

One of the things that clinched our decision to take our first visit was when we learned how accepting Disney World is of children with autism.  Disney has a Guest Assistance Card (GAC) for people with disabilities that hinder their ability to wait in line or use certain queue areas.  Upon arrival at the park you go to Guest Services, show them your child’s diagnosis letter or discuss it with them and they will give you a GAC card for the duration of your time at Disney World.  This accommodation is what keeps us coming back to Disney World (well that and the magic!).  We can enjoy special memories together as a family.  So many of the attractions and rides at Disney World are appropriate for our whole family to enjoy together.  Waiting to get in is not painful because with the GAC we are able to use a Fast Pass lane (where available) to enter the ride.  This significantly decreases the amount of time Owen has to stand in line.  He still has to do it, which is good because he learns the necessary discipline of being patient.  But thankfully the poor people in front of us and behind us don’t have to endure his bouncing off of them for as long as if we’d been in the regular line.  In addition to this and just as important, we have always gone during the off-season and during weeks and days that tend to be slower.  I use Undercover Tourist’s recommendations for which parks to visit on the specific days of our trip. 

Because that major stressor is handled and understood by Disney, we are able to enjoy our children and the experience.  We love seeing the wonder in their eyes.  This environment is perfect for our son.  We are continuously experiencing or doing something, or we’re on the move to the next one.  This constant activity and entertainment is perfect for Owen and it actually allows my husband and I to have a great trip.  While trekking around the parks, kids in strollers, we can talk and enjoy each other’s company.  Upon our return from each of these trips, and a short window of time where Owen is transitioning back into his schedule, Owen has a surge of compliance, learning, and growth.

Another thing we have done before each trip is to write a detailed social story (with pictures) so Owen knows exactly what to expect.  I also bring things like light sticks so Owen feels in control of his environment when it’s dark.  We got into pin trading and Owen’s desire to do so grew with each visit.  This last time he was initiating interactions with cast members to seek out a possible pin trade.  He was having to articulate and socialize with “strangers” and this added a layer to our therapy that we simply can’t replicate at home.  And lastly, we always use strollers!  If you have any concern at all with your child wandering off, or just simply being distracted, or if your child “falls to pieces” when they get tired – bring one!  Up until this last trip we’ve always brought one or two along and appreciated having it in the airport as well – it doubles as an often needed safety measure.  When Owen is in a stroller he feels safer and more able to handle situations out of his control.  For our most recent trip Owen could no longer share one with a sibling (I’ll save this for another post someday!) and he was right at the weight limit for our traditional single stroller so we rented the perfect stroller from Orlando Stroller Rentals.  

 

One thing I have learned about Owen’s “label” is that it really helps people understand him.  We don’t wear it on our sleeve while traveling but when needed I can let people know and quickly turn judgment into compassion (and that could be another whole post!).  I highly encourage families with a child on the spectrum to give it a whirl!  Disney World is the happiest place on earth, after all!

Filed Under: ADHD, Autism, Respite Tagged With: , ,

Everyone Needs a Barney

February 7, 2011 By 1 Comment

I have a “Barney,” short for “Barnabas” (“son of Encouragement”), who happens to be a lady. I met my “Barney” 3 years ago at a CS Lewis Institute Retreat, and chose her to be my mentor for that year’s discipleship program, and to my delight, we have remained close.

She used her day off to get tickets for a tour of the US Capitol Building with me. She picked me up at 10 AM and returned me at 4:30 PM. We had the most low-key, delightful day. The events of the day were routine: taking the Metro (subway) into the city, going on the tour, having lunch afterward, spending some time at the giftshop, taking the wrong Metro home and not realizing it because of our conversation, regrouping, arriving at home. But our connection is extraordinary.

Imagine a friend who greets you with “Hello pretty, skinny lady!” Who laughs and agrees when you tell her she has too much black in her wardrobe instead of taking offense. Who just raves about what a “perfect!” idea you had when you suggested splitting a pre-made sandwich at the cafeteria when there were so many other options. Who goes into a long detailed story about a “senior moment” that really upset her, and you can laugh because you have so many of your own. A childless someone who doesn’t take her eyes off you, and watches you expressively while listening to your long, drawn-out story of your son’s employment prospects and how it all started. Who, when you show her the earrings you are going to buy at the giftshop says, “I saw those and thought of you!” Who takes out a little notebook and writes down the title of every book you’ve read in the last two years that you really liked. Who remembers you remodeled your kitchen last year and she hasn’t seen it yet and is excited about seeing it, and then is effusive in her praise about it when we get home. That’s my “Barney.” Who’s yours?

I have often remarked that the best marriage is when each spouse insists they are the lucky one in the relationship. I think that’s true of friends, too. I’m the lucky one “Barney,” and I love you because you think YOU are the lucky one.

Filed Under: Friends, General, Gratitude, Respite Tagged With: , , , ,

Summer Camp recommendation

January 18, 2011 By Leave a Comment

If you have a child with ADD, ADHD, Learning Disabilities, Asperger’s or high-functioning Autism, I highly recommend Talisman in North Carolina (http://www.talismancamps.com/). We sent Daniel there for 3 years, and I highly recommend it. Please, please consider getting yourself some respite by putting your child in the hands of professionals for at least a week at some type of residential camp program. It is so good for your child to recognize there is a life outside the cocoon of their protective families. And it will be good for you too.

Talisman camp and staff are phenomenal. When Daniel was 13 we sent him for 2 weeks, the next year we sent him for 4 (academics), and the following year we sent him for 6 (academics+2-week Insight), so we are obviously sold on Talisman.

Daniel’s teachers all remark on his maturity growth after every summer. We LOVED that campers get NO screen time*, and that encouraged us to set up a chores schedule for him to EARN screen time when he got home. He always lost a lot of weight because of the physical activity level, which was a good thing in his case. After his last summer there, he particularly improved with regard to his eating issues, which were very restrictive. In fact, although he does complain about some meals, he never refuses to eat them, which is a huge change for him, and a real blessing for us.

*(However, I was TOTALLY IMPRESSED with their flexibility when my son needed to continue an online academic program we were paying for and they allowed him access to a computer. Wow.)

The Talisman program is great because they have standardized procedures in place for conflict resolution, mealtimes, the daily schedule, taking turns with kitchen duty and teaching the campers how to do their own laundry. The counselors are not just activity coordinators, they are facilitators of social interaction between the campers. In physical activities the campers are reluctant to undertake, they have struck just the right balance of encouragement, getting the campers to encourage each other, and getting them to do just one step at a time before doing the next challenging thing. If a camper is truly terrified of say, rock climbing (as our son was), they do not force or badger him into it, although they did get him as far as putting the harness on.

Your child may or may not like the camp. My son never did, although he was very compliant while he was there, and kayaking was his favorite activity. But it was so good for him. He didn’t like it because they challenged him out of his comfort zone every day, and no one likes to be uncomfortable. DO NOT MISS the optional parent conference the day before the last day of camp. This one-day event is invaluable to take in the camp philosophy, ask questions of the administrators and meet other parents. We went every year even though we thought we knew everything {smile}.

Finally, your child’s counselors will be available on pick-up day to spend as much time with you as you want, to get feedback on your child’s behavior and experiences. I encourage you to give it a try and to have no fear about their ability to contact you in an emergency. AND you get a full 2-page written report after your camper’s experience!

Filed Under: ADHD, Asperger, Autism, learning disabilities, Parenting, Respite Tagged With: , , , , , ,