When your child has special needs, much of the day, and sometimes even the night, is spent taking care of someone extremely dependent upon you. A significant amount of energy and time is spent planning and strategizing to stay ahead of your child’s needs. Though I became almost intuitive in recognizing the signs and red flags of my own child’s health, I simultaneously became less in tune and downright negligent of my own.
For the first few years of our daughter’s life, I did not manage my personal needs well, if at all. I dove into advocacy mode intensely and before I knew what hit me, I was suffering from sleep deprivation, anxiety, depression, and physical health issues. What I didn’t realize, until hitting rock bottom, was that caring for my own needs is caring for my child’s needs; because, what my child needs most, is the healthiest version of me. This necessity requires striking a most delicate balance of intentionality in caring for myself alongside caring for my child. As learned from experience, I’m of no help to my child if I have run myself into the ground and can even cause a greater hindrance in the needed consistency of her care. It is vitally important that I invest in myself in order to become a caregiver fit for the long haul.
These are some practices I began implementing to help me care for myself while caring for my special needs child:
1. Get sleep.
As tempting as it is to sacrifice some zzz’s for the case of productivity after the kids go to bed, I’m realizing only so much efficiency happens after a certain time. As much as I would like to prove otherwise, I cannot fully function on less than 7 hours of sleep a night. And with all the challenges that the following day may bring, it will be much more manageable if begun with sufficient rest. For rest, indeed, makes me a better parent. And, if I’m unable to get that sleep at night due to my child’s condition, I must do so at some point during the day when an opportunity arises.
2. Confide in someone besides your husband.
As much as my spouse and I want to be there for each other, our understandings are limited by different perspectives. We have needed someone on the outside who isn’t as emotionally entangled in our child’s care to help each of us on our own individual journey to acceptance and coping. During my most intense season, I met with a counselor who helped me deal with my accumulated grief and stress. This took a lot of pressure off of my husband who was already carrying his share. While this individual shouldn’t take the place of communicating with your spouse, a sympathetic friend, relative, or fellow mother can be an additional lifeline for the emotional support you need.
3. Invest in trustworthy childcare.
We can’t leave our daughter with just any sitter. It has to be someone who isn’t intimidated by her challenges and who we trust completely in light of them. Instead of forfeiting the idea of ever having childcare, we made the effort to find a few people willing and able to care for our child, and then gave them the additional training needed, allowing us to leave in confidence. Once you find good sitters they can quickly become part of the family, so do whatever it takes to make them feel appreciated. There are also potential respite options for an afternoon, evening, or weekend that are available at home or at a licensed facility. Some non-profit organizations even offer it for free. However, if you find it a challenge to locate respite care near you, try asking your local government or other organizations who can perhaps guide you to grants to help meet the costs. Stop believing the lie that you are all alone and take the time to build a capable support team that can share the burden.
4. Spend time with friends.
You know, those people you used to hang out with before having children? Reconnect. You may not have time to maintain many relationships outside of the family, but try to connect with one or two people who’s company you find energizing and encouraging.
The regimen will do wonders to release stress, boost self-esteem, and keep one physically fit (with a strong back and arms) to meet the demands of a significantly dependent child. Endorphins are your friend, so kick them in gear to help stabilize your emotions and release the physical effect of stress on your body.
6. When you feel fragile, take it seriously and take a break.
Ask for and accept help even from people who don’t really know how to help. Too many times I tried to appear stronger and in control more than I really was. This didn’t help anyone and often made things worse.
7. Invest in your marriage.
Statistics show most marriages that involve parenting a child with special needs end in divorce. A marriage needs strong legs to withstand the extra stress and burden. And, communication is of vital importance in order to be a unified and working team for your child. Therefore, the pursuit of date nights and intentional time together, even if at home, is significantly important for weathering the worst together and bringing the best to your family. (Read Geinene’s article on what it takes to keep a marriage strong here.)
8. Find a support group.
Mine was connecting with other mothers of children with the same rare syndrome through a Facebook support page and personal interactions with those living near me. To find a support group, visit websites related to your child’s disability. Many have message boards for sharing concerns, information, and even humor needed to make it through the hard days.
9. Plan outings strategically.
If I know I have therapy or hospital visits that will emotionally and physically drain me, I guard the time after to give me the chance to recover. I have become the master of my schedule and therefore am able to protect my emotional state of mind. I have learned the art of building in margins I need and the discipline of only considering outings worth the limited energy and time my child and I have.
10. Find a hobby.
You are more than a caretaker…someone full of dreams, talents, and gifts. Rediscover yourself. Even if it’s only for 15 minutes a day, find something to do for yourself. This is a simple way to relieve stress or bring you much needed joy. Discover something that is life-giving and can counteract the emotional, mental, and physical depletion you encounter on a daily basis. (Reading self-help books doesn’t count.) Listen to that wild hair if you must and do something wildly fun, invigorating, and carefree.
11. Get organized with your child’s paperwork.
Call in reinforcements if needed. This measure not only gave me peace of mind, but a greater confidence as my child’s caregiver. It can also save tons of time, which in turn can be invested in the supportive things you need. (Don’t miss Geinene’s article on a helpful hack for moms with special needs children to stay organized, here!)
12. Adjust expectations.
I had to come to terms with the reality that things would just take longer and I learned to adjust. I stopped comparing my situation to others and decided to look at our life for what it is, our life lived at our pace. I gave myself more grace and less criticism.
13. Think positively.
Deciding to look at my glass as being half full rather than half empty has allowed me to genuinely celebrate every little victory and operate in a mindset of gratitude. The discipline of hope has helped me to trump the natural feelings of anger, fear, worry, and stress which can produce a slippery slope to the darkness I do not wish to return.
14. Get a massage.
You deserve the reward and your body could use the nurturing.
15. Stay in community and focus on the bigger picture.
I had to fight the initial temptation to isolate myself and live in despair. And, I am still in need of the consistent reminder that life is full of goodness and that I am not in control. I know that I cannot carry such a burden alone, and I am so thankful to know that I don’t have to. I have been challenged to keep a bigger perspective and consider how this situation has been used in my life to not only enrich me and our family, but to do the same for others.
To learn more about Geinene and her family’s journey, read Finding a Muse in the Mess: When Grief Becomes Art.
You’ll also like Dear You, You Were Made for Something More, One Mother’s Story of Down Syndrome and Joy, Comforting Thoughts For Moms on Rough Days, Love Not Lost: Giving the Best Gift to Grieving Families, How to Move On From the Loss of a Dream, and Life Before Skylar.