When the Caregiver Needs Emergency Care

It's raining today and I'm a little sad. Normally, on rainy days Ryan and I do some therapeutic scrapbooking and bake chocolate chip cookies. I'm not quite recovered enough today to do that. I had a total hip replacement a few weeks ago. While I'm getting better every day, I still fatigue easily.

It's so scary being a caregiver and getting sick. I was in the hospital in January with massive ulcers in my esophagus, stomach and intestines caused by medication. Frantic, I had someone take care of Ryan in an emergency respite situation. Whew! Then my hip started spasming and I ended up in surgery with a second hospital stay and MORE emergency respite. Fortunately for me my workplace allows PTO (paid time off) so I didn't miss wages, Ryan has IRIS funding so that paid for the emergency respite but I have to tell you ... no matter how well you think you're set up you cannot do it alone!

I have trusts set up for Ryan, guardianships, emergency plans etc. but without my friends and family I would have been lost. My mother stayed on the couch for weeks, my brother helped with respite for Ryan and set up equipment for me, my faith family brought in meals, helped rake the lawn, sent cards and encouraging notes, hooked up wireless for me so I had something to keep me occupied and in touch. I was truly humbled by the number of people who sent flowers, cards and visited, to say nothing of the prayers that came my way. What a God send.

All that to say

• If you're not connecting to a faith family, you need to be.
• Set up the emergency plans but be ready to deviate from them if necessary.
• Find out ahead of time what benefits your company has for short term disability.
• Check with ADRC (Aging and Disability Resource Center) for help
• Find out who can help pay for emergency respite workers
• Set up respite workers ahead of time and USE them
• Help others when they need it, what goes 'round, comes round.

Most of all, prepare for the worst case scenario but believe in the best outcomes. Remember, I'm out here too, muddling through. Hang in there!

Love and Joy,

Karen

Routine

I've had Ryan on a routine since he was tiny. When he was three and four years old I taught him how to make his bed when he got up. It was the first thing he did each morning. Once he had it ... he had it. For the first ten years I put up with sheets and underblankets hanging askew under the colorful quilts but I never corrected him.

When I tucked him in at night I commented on whagt a good job he'd done that morning. His little chest swelled with pride. He's 20 years old now and we still deal with sheets that hang before the comforter some days. I still don't correct him. It's just not worth hurting his feelings. If I feel that something more needs to be done I wait until he's gone and adjust it. As a single parent I appreciated that it was one less thing for me to do.

Ryan also brings his dinner plates to the sink when he's done. A friend of mine commented on it once. "He has to help out," I said. "We both live here and I can't do it all." I don't think those chores were too hard on him. He also keeps the dog's dishes full of food and water, takes out the trash to the outside can when I ask him, and helps with myriad other tasks. He can see that it's truly helping.

What do you all do for tasks for your little guys with special needs? Do you ask them to help out? Or do you like everything "just so" and do it yourself? How would you feel if you didn't have to EVER take out the trash because it was another family member's job? It's surprising how "one less thing" can cause a sigh of relief. Try it and see what happens.
Good luck and talk to you soon.

Dealing with Medical Vendors

Don't you just love it? Medical vendors are indispensible when you have a child with special needs but often times, if there is a third party paying, you end up jumping through hoops for months before you actually get what you need.

Just got an order of diaper wipes? Better order the next batch before you actually need them. Either they'll come the next day and you'll be swimming in wipes or they'll come three months later and you'll be wetting paper towels.

Really, we've had great luck most of the time but the timing seems to be the bug-a-boo when ordering anything. I just ordered a sock puller, a coccyx seat and a cordless amplified phone for Ryan. When I called the company to see what the hold up was they informed me they hadn't received the $325 order. Yikes! Between the time I filled out the order and sent and the time when they should have received it ... the company was sold to another person who changed the name. The clerk tried telling me that I hadn't ordered from the right company. I informed her of the name change. Sheesh! You'd think they'd at least tell their employees. How else would the previous 800 number reach the new company?

I'm not angry. Life is too short for that. I'm intrigued, however. It seems as though the amount of paperwork required by the disabled to get what they need is horrendous. It is for everyone, but correct me if I'm wrong ... we write novella of medical information, document and triple copy any orders for adaptive equipment, chart health issues, record odometer readings, run accounts receivable and payable like a corporation.

You think it'll get better when they get out of school but the transition paperwork nearly snowed me under. Anyone got any great sites for medical equipment? Add a comment and lets network a little. I LOVE School Specialty. So far our orders have been fast, accurate and customer service rocks.
Talk to you soon,
Karen

Welcome to the blog, Life on the Exceptional Side

Hi everyone,

This is my second blog on special needs parenting. I wrote another one called, what else, Special Needs Parenting, about 3 years ago. It's still on blogger. I tried to move it to my dashboard and add to it now that I'm ready to blog again (don't ask ... just know that it involved mulitple surgeries, hospitalizations and the like ... YOU know how time slides by when dealing with that stuff!) but I couldn't get it to transfer. Blogger had switched up some of the criteria and after HOURS of frustrated attempts I gave up and started a new one. Please feel free to check out the old stuff on Special Needs Parenting (http://specialneedsparenting.blogspot.com) It's still me!

Let me tell you a little about me. My name is Karen and my son's name is Ryan. I've written a column for Family Times called Life on the Exceptional Side for over ten years. The column deals with a variety of special needs issues. If you like the blog you can always subscribe to Family Times too. PM me and I'll get you the address. Just know that it is very local in content for the majority of the publication except for my column which is usually general.

I hope to post daily but wanted to get this one out right away. Please feel free to comment, ask questions or join in discussions. This blog is about parents banding together when they feel alone. I'll talk to you tomorrow. In the meantime, hang in there, I'm praying for you and your special someone!
Much love and joy,
Karen