Friday, November 27, 2015

Holidays = Distrupted Routines

The holidays are here and we all know what that means.

Disrupted routines! AHHHHHH!!

Schools are on break, therapists go on vacation, and your daily routines are in jeopardy of being overthrown by the busyness of social gatherings, cookie baking, decorating, and shopping (of course). Typically, I work on most of those things while my daughter at school, but during the holidays and school breaks, that is no longer an option. Here are five things to help keep your routine intact (almost) and help you survive the holidays.

1. Make a list of the must do's in your routine.

I know what I can and can not get away with doing and not doing when it comes to our daily routine. I DO need give her medications to her on time. I DO need to feed her, give her fluids, and make her smile & laugh. I DO NOT necessarily have to get up at 4am to put her on her chest physical therapy (CPT) machine every morning. I DO NOT have to give her a bath on Tuesday if Wednesday will work better for us.  I DO/DO NOT need to keep every one of her appointments (it's case by case). Knowing what I can be flexible with helps me plan out our day.

2. Pinpoint where you have flexibility in your routine/day.

Structure is great. Some of us really thrive on it. Unfortunately, it drive me bonkers. I like being able to have flexibilty in my routines. By noting when I have the opportunities to be flexible, it makes it easier for me slip out for lunch with a friend or run an errand that just can't wait any longer. Yes, my daughter needs to have time in her stander/walker and she needs to continue practicing on her Tobii, but those are activities that I am able to shift as I need to (unlike her medicine).

3. Keep your expectations reasonable.

If you aren't used to having your daughter home all day, every day, then cut yourself a little slack. More often than not, you are one person trying to do the job of three or four. There is no way I can expect myself to accomplish all they do with my daughter at school in the comfort and craziness that is our home. She may use her stander one day and her walker the next and I don't need to beat myself up over it when I can't do it all. We can't always be SuperMom. Which brings me to my next point.

4. Take advantage of respite care.

Do you have respite care hours, a nurse, a trusted family member or friend willing to help? Then use them. I know that is easier said than done, but trust me, you will need some time to just take care of business (calling insurance/doctors or going to the store) or maybe just sipping a cup of coffee in the peace and quiet of your favorite shop. I can tell when I need a break and a little time to myself because I start feeling tired and grumpy. If I'm not getting that time to just unwind, it makes our routine that much harder to follow. This works best when you are honest about what you need and what you can and can not do.

5. Be honest with yourself, friends, and family about what you are able to commit to.

We've all done it before; over-committed ourselves by not being honest about our limitations. We all have limitations, and I'm laughing at myself right now because anyone can tell you I am quick to say yes when asked to help. Then, I start to realize I have bitten off more than I can chew, and back peddling just isn't my style. Now, I am making more of an effort to be honest with myself and others about what I am able to commit to and complete. It is okay to say "no" or "not right now" ; especially if the request would be difficult to work into your routine.

Bonus Tip:

6. Expect the unexpected.

The unexpected is going to happen and you'll have to make quick adjustments to your day. Most of us have already experienced those hair raising moments that completely destroy our plans. Most recently, we found ourselves in the emergency room  of the Children's Hospital of Atlanta, in Georgia (we live in Florida) because I accidentally pulled out my daughters g-tube button. I kept saying, "We were going to go to the aquarium today." and then a little cynical laugh would escape my lips. The unexpected happens: it doesn't care about your routine/schedule, and you just have to roll with it. Rest assured because you will always find a fellow Rett parent to help you through it.

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