My Complex Care Child is NOT Scoopable
The Secrets To Taking Your Complex Care Child On Outings.
It has always been very challenging to take my daughter, Elise, out and about. You see, although she is adorable, kind and well-mannered, my sweet girl was born with a rare chromosome difference, multiple disabilities and complex medical needs. For her, this means she only walks, talks and eats with our assistance. She requires constant 24/7 complex care and to take her anywhere safely, you must have an unbelievable amount of forethought, preparation, nerve, and luck.
When Elise was much younger, Kelly was one of her favorite home nurses. Along with being talented and resourceful, Kelly was so kind and loving to Elise. Over the years, she became a good friend to our family (and still is). Kelly’s own three kids were a bit older than my three, so she was able to share much of her invaluable parenting advice, as well as her kids barely used hand me downs.
On one particularly hot, high tempered and chaotic afternoon, just after my oldest had hit my youngest with a Tonka truck, Kelly calmly and cheerfully bestowed upon me her latest advice. “When I had days like these I would just scoop my kids up and take ‘em to Scusset.” (Scusset Beach- near Cape Cod)
Of course, as you can imagine, I was not in the mood at that time to hear Kelly’s cheerful advice. Immediately, the devil on my left shoulder (I’ve appropriately named her Sinith) seethed while wanting to yell ‘Mind your own business Kelly! You will never understand my situation or how difficult it would be to just scoop up MY three kids!’ Luckily, Angela, (who resides on my other shoulder), thoughtfully advised me, ‘You know she is just trying to be kind and helpful. Just take a breath, smile and nod.’
While we didn’t go that day, after a week of continued begging from my oldest, along with days of planning and hours of packing everything up, we finally set out for a day at Scusset Beach. With Kelly in tow, of course.
The moment we got to the end of the driveway Elise started to whimper, then cry, then scream and writhe like she was in extreme pain. We checked everything we could think of and couldn’t find the source of her discomfort. Gas? Headache? Just stress from my stress? We may never know.
Although that day ended up being a bust, we have since had many successful outings with Elise- and especially fun ones at Scussett Beach.
While I’m not here to advise you to just scoop up your child and take ‘em to Scussett` I know how wonderful it has been for our family to take Elise on outings as much as we can.
Luckily, at this point in my adventure as a complex care parent, I have learned many tricks of the trade that have helped it become easier to take my complex daughter out and about.
- Give Yourself Grace: One of the most important things I’ve learned is to give yourself grace. Even taking a typical child on an outing can be challenging. Taking a child with complex care needs out can seem insurmountable, and for some, nearly impossible. Then there’s the guilt of not taking them… more on that later. I have learned that there are times when it’s really important to take Elise out and there are also times when she would have just as much fun at home. Remember we are all doing the best that we can.
- Be Prepared Ahead of Time: Research places and have a list of playgrounds, beaches, parks, outings and activities that are accessible AND your children will like. Find places that you know would be fun for them, but less stressful for you. One of our favorite places to go is the Bass Pro Shop. It’s a nice cool, indoor place that has an outdoor feel- and they allow dogs. Bass Pro has fish tanks, animals (although they are stuffed), an accessible bathroom and best of all it’s not far from our home.
- Take Along Help: If at all possible, take along someone- or two to help. Although I can do it alone, it’s always so much easier and more fun to have a second set of hands. Even if you can just bring a family member or a friend, things should go much more smoothly. I typically have a friend or caretaker come early and hang with my child while I get us packed up. Also, if you have multiple kids in tow, it makes sense to have one adult for each child.
- Don’t Give Up: Lastly, and most important, if it doesn’t work out, or the one time you go it’s a complete disaster, don’t just give up and never try again. For the longest time I used to say “Oh, Elise just doesn’t like to be in the car.” But you know what? The more I tried, the better she got. The things I’d crossed off the list when she was two and three became her favorite memories at five and six.
Most of all try to enjoy the time away from your house. The less stressed you are and the more you can see the benefits, the more you’ll be able to get out of it too. Plus, don’t forget it’s a great time to bond with your child, friend, spouse, and make some great memories. These are the times you will look back on fondly- I promise. Enjoy!
