Balance is never easy. Balance is the ability to perch precariously on the special needs tightrope without fear. Balance is a tiny tumbler finding her footing on that steely rope. Balance is juggling everyone’s needs effortlessly (including your own) while everything floats in an air of uncertainty. Balance is feeling the weight of the world on your shoulders, yet having the wherewithal to create motion. Balance is never losing one’s focus even when danger lurks large.
Yes, balance is your family’s personal special needs high wire act. It is extremely difficult to identify what balance is in relation to caregivers because every caregiver’s situation is unique. Yet, balance must be maintained if you wish to survive caregiving. It is a necessity.
Every family balances a myriad of needs, even in the typical world. Yet, balance is especially challenging to ascertain and even more difficult maintain in the caregiving world. That is because neurotypical families are just a little more grounded than special needs families. They walk the balance beam, not the tightrope. If things go askew, they fall from a more grounded position. They dust themselves off and begin anew. Yet, for special needs parents, the risk is greater and there is real danger in losing your focus. It is ever so easy to lose yourself in this life or you may burn out.
We can all identify with certainty when our life is off balance. It is felt in one’s being. We have all endured the fall. It is brutal. The worst is sucking up the tears, dusting off your broken spirit, and convincing yourself to keep on keeping on when all you want to do is give up. The truth is, like a small child learning to ride a bike, the only way to acquire balance in one’s life may mean losing one’s footing in the process. Balance is not a fixed position. It is trial and error. It is fluid and you must constantly adjust your position in space.
I hear every day caregivers whispering with their words that indicate their balance is off. I hear friends state, “I am failing…I suck at this.” Or, “This therapy schedule is killing me. Do you think it is all right if we take a day off?” Or, “I am not sure if my relationship is going to make it because my significant other and I never seem to be on the same page.”
And, the biggest red flag that you are beginning to fall is, “I am never happy anymore. What am I doing wrong?” The answer is…nothing. The answer is everything.
New parents to the caregiving world tend to approach the special needs tightrope at a running pace. As agile as possible, we, caregivers, attempt to stand in our new environment and then, take off in a full sprint towards the goals before us, all the while juggling everyone’s needs. That is a recipe for disaster. In doing so, we neglect one very critical step: finding our balance before we move towards any goal.
I will give you a personal example of this. I have twins with cerebral palsy. One twin, Noah, faced many issues daily, such as eating, constipation, frequent surgeries, and mobility. As a result, I was constantly monitoring something at all times. I was constantly advocating for something at all times. I realized one day that I felt physically numb from it all. I could tell you what my son had eaten a week ago — the amount of calories in that food item and how much protein — but I could not remember if I had eaten yesterday. He was getting therapy daily, but when was the last time I exercised? Was I getting enough sleep? Had I taken time for myself to focus on my health? I felt washed away in a sea of need.
That is when I made a pivotal decision. Before I can move anywhere along this tightrope of need, I must center myself first. I heard once, if you are ever faced with a crisis situation, you must place the gas mask on yourself first before you can save a loved one. The same principle applies to caregiving. Thus, I cannot move anywhere along this special needs tightrope unless I am sure footed, centered, and focused on my destination.
So, what can you do if you feel yourself beginning to lose your footing?
1. Stop for a moment.
This may sound crazy, but stop just for a moment. If you are doing therapies 9-5 and feeling overwhelmed, stop all therapies. Take what I call a home vacation. Don’t go anywhere. Don’t do anything out of the norm. Yet, focus on you and your family at home. Take a personal day. Heck, take a personal week.
Family time is important, too. I can’t tell you how many times people have expressed guilt to me over skipping therapies even for just one day. They say, I can’t do that. What if my child never walks because of this? I promise you one day in the big picture will never be a deal breaker, but to a family that is feeling overwhelmed, a day at the park may be the catalyst for personal well being. It is a centering experience. It prepares you to move ahead in the future. It is not wasting time. It is investing in you and your family. It is making your needs a priority. Plus, strangely, after short breaks from therapy, often my son has made great gain therapeutically. My thought is that he needed down time, too. He used it to process the input he had been receiving through his therapies.
2. Find what fills your bucket and make time for those things.
Caregiving is a morning-to-night, 24-hour, 7-days-a-week job. You need to make what fills your bucket a priority. For me, it is a bagel at a coffee shop. For someone else, it might be a hot bath. For another person, it might be traveling, a guilty pleasure like binge watching your favorite show, or going out with friends to the movies. Everyone’s bucket is different because we are each unique. However, every day I focus on doing one thing for me. It doesn’t have to be expensive or time consuming. Yet, it is personally valuable and makes me smile. I do one thing that fills my bucket daily. Don’t let anyone make you feel guilty about filling your own bucket, because if you do not fill your bucket, you risk your balance becoming skewed. Invest in a more balanced life, and that balance begins with you. Put the gas mask on yourself so you can help others.
3. Make a conscious effort to establish proper channels of communication as a family.
Everyone in your family holds value and their needs are important. If you establish communication, there will be an outlet for each of you to express what is going on with you today and connect. You will feel more like a team and less alone. So, occasionally, make time to eat at school with your child’s typical sibling. Make time to talk with your significant other. Schedule it. For my boys, we have scheduled a time that we talk about our day. I find out the most interesting things during those moments, what is worrisome, what made my boys feel empowered today. I make them tell me three things that happened at school daily. It is expected.
4. Set boundaries with family and friends.
Never be afraid to say no. You may not be able to be cupcake mom at school. You may not be able to fulfill the extras in a friendship such as going on every outing. The first time you say no or establish boundaries, it may be painful. You may see who your true friends are at that moment. You may not have the luxury of investing in any more than what you are capable of providing at this moment. Prune your friends and responsibilities to allow growth where it is needed.
5. Remember happiness is a choice.
As such, you may have to work at it. I play motivational music to get in the right frame of mind for the moment. I write inspirational sayings around my home. I read books about people who have faced adversity and overcame obstacles. I keep a thankful log. I try to exercise or walk if possible. Others do coloring books, word finds, knit, or paint. There are so many things that can be done in just a few precious minutes that can refocus your whole day.
6. For those of faith, spirituality can be very empowering.
When feeling overwhelmed, I center myself through prayer. For one who has different belief systems, you might try meditation or mindfulness. Many use yoga or deep breathing. It is creating an eye in your personal hurricane so you can walk in that eye. No matter what is swirling around you, you are focused on that next step. Sometimes, it is moment-by-moment. Other times, it is day-by-day.
7. Try not to hyperfocus on only one area.
I need a balanced approach in all aspects of life. It is easy to lose yourself in a moment. Trust me, I know. If you are advocating for a quality education, you can find yourself hyperfocused on nothing but IEPs, inclusion, and goals that you lose yourself in the educational world. If you are advocating with insurance, you may find all of your time filled with form letters and phone calls, and you miss other opportunities right in front of you. If you are doing therapies 9-5, you can find your time implementing strategies or traveling, so that you never have family time. Just know when you are juggling needs that you may have to let go one need for a short time in order to address another. It is a constantly rotating process. If you hyperfocus on nothing but one area, you may neglect others, and all those needs will fall by the wayside.
8. Try journaling.
Many people find journaling helpful. Some people like to blog, but journaling does not have to involve blogging. It may be helpful to just place your feelings on paper knowing only you will read it. If things are making you feel off-center and overwhelmed, writing them down can release that pent up energy. Other people are goal-oriented and prefer to write personal goals. Writing those down may give you a direction. I wrote a mission statement when my boys were young because it gave me a direction to focus my energies. Writing is a great tool to provide balance to your life. Plus, it is a great gauge of progress. You can easily gauge both your child’s progress and your own emotional growth.
9. Create a scaffolding of support systems.
Find groups where you can vent with others facing similar challenges. There are so many great Facebook groups. I have made so many great Facebook friends who walk my walk. These are friends who get it. We lift each other up during the challenging times and celebrate inchstones like milestones.
There are also many wonderful local special needs communities. In Georgia, we have a great group called FOCUS and we meet monthly in share groups. We plan activities for parents and activities for our children. It is wonderful. They are some of the most knowledgeable people I know. We are each other’s strongest cheerleaders. You need that in your life. Many have top-notch family and friends who act as their support systems. Others may need to create their own support systems. A counselor or clergy member may be included in your support system. Often, they have strategies you may have never considered. It takes a village. Find yours.
10. Be kind to you.
Remember the only way to find your balance may mean to lose it at times. I think caregivers are more critical of themselves than any other people. We hold ourselves to such unattainable standards. Yet, we forget that we are not grounded. We walk the tightrope. Things at that height are precarious. Just to stand upright when such weighty pressures are on us at all times is beyond taxing. Survival at that height is an achievement of epic proportions.
You may feel that you are not doing enough. Your child is not where you would like him or her to be. You may feel stagnated and in a state of despair. You are not juggling every aspect of this caregiving life in perfect unison. You may be comparing yourself to others who are more grounded. We all do things like this at times.
Give it some time. It is trial and error. Just remember not moving forward may not always be a negative. You may be working ever so hard at building balance for your family that movement towards a goal is possible. When you slip up and miss your mark, pick yourself up, climb back up, and inch along that tightrope.
However, never say that you are failing. Caregiving is rooted in love. You cannot fail at love. You just need to find your balance again. Recenter, refocus. Then, move on and the audience will erupt in applause.