Children with medical needs or other special needs are heavily reliant on their caregiver in many cases. In the majority of situations, this is out of necessity and not preference. Most parents would love their children to be able to play on their own for a little while so they can take care of household chores, make phone calls, and take care of other tasks. I’ll share a few ways myself and other Moms I know have increased their child’s independence. I hope they work for you as well!
It’s difficult, when your child has medical difficulties, not to worry about what tomorrow brings. Good days take turns with bad ones. On good days you worry a bad day is next. On bad days you worry tomorrow will be worse. When bad days chain together it feels like it’ll never end. Our minds are talented at focusing on the negative. Bringing your thoughts toward the positive can bring a significant improvement to how you feel about your life.
Getting settled into a new routine after a emergency or crisis is one of the hardest things I’ve had to handle as a mother of a special needs child. One of the tricky things about not having a diagnosis is that you never know if you’re looking at a new illness (virus, infection, etc.) or a new feature of the undiagnosed syndrome. It’s happened several times that the new problem has turned out to be another clue to the underlying syndrome and we’ve had to adjust what we’re doing to accommodate. So, that’s all well and good, but how do you do that?
OK, so what do we do when we’re in a crisis situation? We need to have a plan ahead of time, because there isn’t any time for planning after the emergency begins. No one sits in the back of an ambulance, or in the ER thinking, “OK, lets make a crisis management plan!” First, we need a support person. Ideally this would be someone you trust completely and is competent enough in the basics of your child’s care to take care of them for an hour or two. At minimum, it can be a friend who would be willing to take the time to call you once a day, see how you’re doing, and remind you to eat. Ideally you would have a backup that’s probably closer to the latter than the former. It’s unlikely that your support person would become laid up at the same time your child is going through an emergency situation. Unfortunately, depending how many emergencies your child has on a regular basis it’s far from impossible.
This post is part of a three day series about how to handle stress when you’re bouncing back and forth between crisis and calm. I hope you find it helpful. I would love to hear about things YOU are doing to manage your stress.
There are two situations mothers of special needs children find themselves in more often than we would like to admit. The first is crisis situations. Many, although not all, of these land us in the hospital with our already struggling child. Once there, we fight fiercely to protect them from catching something even worse than what brought them in in the first place and engage in a constant power struggle with the hospital staff to let our children sleep. The second is what I call the, “new normal.” This frequently, though not always, comes after a crisis. Something has changed in our child’s condition and it’s changed the way that they and we have to live our lives. Identifying which of these two situations you’re in is key to properly handling your stress level.
When Mom’s sick, everything keeps going. I know I’m not the first woman to mention this, and I won’t be the last. It’s not very fun when you don’t have sick days. For the most part, you can always pop a pill and keep going, but the fatigue is overwhelming. Even if all of your symptoms are under control from medication, your body is still fighting something. It takes all of your energy you normally use for getting through your day and routes it somewhere else. You’re left with bleary eyes, sore muscles, and clouded thoughts. All the while, you need to figure out how much water you need to drink to stay hydrated if you knock back five or more cups of coffee on top of your illness.
Every year since my son was born we’ve struggled with medical bills. We’re blessed to have insurance that covers a vast majority of the cost, but even then we’ve hit our max out of pocket about six months in. It’s a huge relief when it comes, but the struggle to get there is very real. Putting out thousands of dollars over your normal bills is stressful, even in the best of circumstances. When you have a child with medical needs that’s keeping one of the parents from working full time, it’s so much harder.
I’m not a loner. I like being around other people. I LOVE being around other people that are interested in what I have to say. I’m that person at work that volunteers to present. I enjoy networking and it’s not something I consider a chore. So, when I started home I wanted to go right back to the workplace. God had other things in mind for me, because I couldn’t go back. My son’s medical needs prevented me from leaving him with your run of the mill child care center.
I found out today that I can finally work! I’ve been asking and asking, and they kept telling me they didn’t have anything. They found something I can do! The hours are flexible and the work is independent, so I don’t have to worry about coordinating around anyone else’s schedule. I’m so happy I can’t describe it. This one small thing, just being able to put in 10-20 hours a week, has completely changed how I feel about my life.