It’s unexpected.
No one expects their child to be diagnosed with a serious illness, injury, or rare disease. When it happens, parents are shocked and surprised. Rushing to the emergency room after an accident, seizure, or illness, is often the first step on this long journey. Parents find themselves frantically having to learn about a chronic condition they know little about.
Mothers of children with special needs are often their child’s source of strength. Trial and error teach moms how to accommodate for their child’s extra set of needs. They stay strong for their (child in crisis) while supporting their other children and extended family and friends who are genuinely concerned.
Life is different. This journey is not temporary. It’s not a three-week course of antibiotics or surgery after a broken bone that will heal once a cast is removed. Instead, it’s a permanent change of life as you know it. There will be no quick fix or cure. Rather, it’s a marathon.
If you’re parenting kids with special needs, here are 15 ways to care for yourself from a mom who knows.
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Accept that anxiety is a part of the package.
Anxiety is an uncomfortable emotion we feel when we are uncertain, indecisive, or afraid of what may happen next. The inner turmoil caused by anxiety can result in nervous behaviors such as pacing, feeling nauseous, and changes in sleep or eating patterns. Since there are no easy answers to the challenges our children face, we accept that anxiety and worry will happen.
MY THOUGHTS: Pace yourself. Deal with challenges as they come. You will feel worried, scared, and annoyed when you lack control of the situation. Continue to move forward. Anxiety does not have to take away your strength.
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Control anticipatory anxiety or it will control you.
Anticipatory anxiety is different. Anticipatory anxiety is when you worry about things that have not happened yet. Stop negative thoughts that lead you into worries of the unknown future. Since it is impossible to control the unknown, you don’t really know if the negative things you worry about will happen in the future or not.
MY THOUGHTS: Control anticipatory anxiety by learning how to interrupt, stop and replace these thoughts. As soon as negative thinking starts, interrupt yourself. Clap your hands, snap your fingers, stand up, move or snap a rubber band on your wrist. Do whatever it takes. Replace negative thoughts with encouraging and productive thoughts. This new habit will help you control anticipatory anxiety and stop it from controlling you.
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Staying organized will give you control.
Stay organized. There are many areas of your child’s life you need to organize such as medication schedules, doctor and therapy appointments, caretaker schedules, and a list of specialists you may encounter. Identify the types of organization methods that work for you. Use them consistently.
MY THOUGHTS: Looking back, I remember when my daughter was four years old thinking that one day, I would not have to organize her medications, hospitalizations, therapy appointments, and academic/work schedules. That was over 20 years ago. As I write this, I still organize each day. Keeping organized is key to how I have managed her challenges as well as the wonderful progress she has made.
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Accept that you are supposed to take care of yourself.
Many parents struggle to keep up with their own work schedules as well as the daily schedules of their children. This can include homework, school events, music lessons, sports events, and annual doctor and dentist appointments. Many parents of “typical” children cannot even imagine adding to this the extra layer of scheduling required to care for a child with a serious illness, injury, or rare disease.
The extra layer can include multiple therapy visits, appointments with specialists, tube feedings, daily medications, and hospitalizations that can last from days to a few weeks. It’s no surprise that mothers of children with special needs are tired, run-down, and rarely find time for themselves. Still, it is essential for mothers to schedule and follow up with annual doctor appointments and screenings for breast/colon/skin cancers, blood pressure, diabetes, and cholesterol checks.
MY THOUGHTS: Yes, it’s easier said than done, but it’s essential for moms to take care of themselves. Taking care of yourself and following through with preventive health appointments can prevent your immune system from becoming weak, causing serious health consequences. Parenting kids with special needs requires us to have energy, think on our feet and spontaneously handle the next unexpected situation. Ask those who support you for help. They will take care of your child so you can attend your health care appointments. Accept that you deserve to stay as healthy as possible.
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Self-care is a list. Do the list.
There are many ways you can stay strong and keep your mind and body healthy. Make a list of what self-care activities you enjoy doing (or used to do) and begin working them into your schedule: exercise, stretch, hydrate, sleep, eat healthily, and practice deep breathing exercises to relax your body and your mind. Give your mind (and eyes) a break from reading and researching on the computer.
MY THOUGHTS: DO what is on your list. Commit to yourself. Begin with activities that do not require extra time such as hydrating, eating vegetables, stretching, and deep breathing. Work your schedule around when your child is in the care of others. For example, when my daughter is attending physical, occupational, or speech therapy, I use this time to exercise. I plan ahead, bring running clothes and while she is in session, run three or four miles outside of the hospital or facility. This allows me to stay strong, relieve stress, and re-energize for the next day. Start with small steps toward your self-care goals. Be consistent and build from there.
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Have fun without guilt
Taking time out to enjoy time with friends is difficult when your child is struggling. The guilt of leaving a child who is dealing with an illness or disability weighs heavily on parents. Feeling guilty for having fun is not fun. However, when you allow yourself to enjoy time with friends and family, away from the stress, it may help you cope. Time away will allow you to relax, re-energize, connect with friends, relieve depression and strengthen important relationships.
MY THOUGHTS: Give yourself permission to take a break. Enjoy time with friends and family without feeling guilty. If you are used to making sure others in your life are “ok” first, before you, this may be the most difficult part of your journey. Although having fun without guilt is a struggle for me, I understand how important it is to my physical and emotional health.
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Remember that you and your spouse (or parenting partner) are on the same side of the table.
Raising children who are faced with additional challenges that affect overall development is stressful. When couples work together, the child care challenges they encounter can afford them an opportunity to become closer as a couple and cope together. Couples can learn to support and appreciate each other.
However, when partners do not cope together, the relationship can shatter. When one partner abandons the other, emotionally or physically, (i.e.: working late, a substance or other addiction, an extra-marital affair), the responsibilities and stress fall on the other partner. In this case, marital problems can become impossible to resolve.
MY THOUGHTS: Begin by acknowledging that many of the challenges you endure with your child may not have clear-cut solutions. Position yourself to work together. Sit on the same side of the table with your partner and put the challenge or problem on the other side. Communicate as a team. Focus on listening to understand as you share fears, vulnerabilities, and ideas of how to approach the situation.
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Stop blaming yourself for not preventing this situation.
Many mothers of children with special needs blame themselves for their child’s challenges, even when there is no logical reason. Blaming often begins with “What if?” questions:
- “What if something I did while pregnant caused this somehow? or
- “What if I was there to prevent the accident?
These questions are unproductive and waste mental energy.
MY THOUGHTS: Self-blame will only exhaust your body and mind. Focus on what you can do and steps you can take to move forward.
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Stop blaming yourself for not being able to fix or cure your child.
Regardless of how many therapists, doctors, and researchers you talk with about your child’s condition, you may not be able to fix or cure your child’s disability, injury, or rare disease. Answers may not be available. Accept that unanswered questions and challenges may always be a part of your child’s daily life. Blaming yourself or constantly feeling defeated is wasted energy.
MY THOUGHTS: Finding answers, relief and a cure for your child is something most moms of children of special needs want to accomplish. However, you may not find answers quickly. Stop kicking yourself for not being able to fix or cure your child. Instead, focus on the challenges of the day. Spend your mental energy communicating with your medical team to identify effective treatments and accommodations that work for your child.
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Accept your emotional reactions, thoughts, and frustrations.
As you watch your child accomplish goals, while overcoming significant challenges, you may experience many emotions such as joy, anger, and frustration. Thoughts and emotions may flood your mind as you watch your child struggle with tasks that may seem automatic to most children their age. Feeling unsettled is a part of this journey.
MY THOUGHTS: Allow yourself to experience emotions as they come, both pleasant and unpleasant. Expressing how you feel is not a sign of weakness. It’s a way to cope.
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Know your people and connect with them often.
People will surprise you. Some family and friends will support, listen and want to understand the stress you experience related to your child’s special needs. Others will disappear. They may not answer calls, or invite you to the same playgroups or parties you have attended in the past. Excluding you and your child may not be a sign of poor character, instead, they may be uncomfortable with the special needs of your child. Once they become more familiar and comfortable, they may reconnect with you and your child. Unfortunately, not everyone will.
MY THOUGHTS: Give friends and family a chance to understand your child’s needs. Help them communicate with and get to know your child so they see beyond the disability. For those who continue to exclude you and your child, let them go. Don’t waste time or energy on those who refuse to be inclusive and may never understand. Gravitate toward those who want to be in your circle.
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Know when to push back and when to back down.
Sometimes people may shock you by the rude and nasty things they DO or SAY about your child or to your child. Negative behaviors may be passive and subtle while others may be overt and obvious. Either way, your child may feel bullied, depressed, and excluded. Fortunately, many of these situations will provide opportunities for others to learn about and gain an understanding of our children.
MY THOUGHTS: Over time, you will become confident about how to respond to the negative and rejecting comments or behaviors of others. Expressing your thoughts about negative behaviors will help to set healthy boundaries. Other times, staying silent in response to the negatives will be effective. Have faith that you will gain confidence about when to push back and when to back down.
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Celebrate each step forward as you teach others how to be inclusive.
Every skill your child develops is a step forward. Others will celebrate with you as they watch your child learn and feel pride about their accomplishments at school, social groups, church, sports, and family events. They will follow your lead and also include your child while appreciating their challenges and accomplishments.
MY THOUGHTS: Celebrate big and small victories as your child develops. Every step is a step forward. If your child needs accommodations for sensory issues, seizure control, or physical limitations, others will learn from you and follow your lead. They too will encourage your child to participate and be involved, regardless of their challenges. …
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Focus on the CAN DO’s.
Parents worry when their child’s development falls behind their peers due to an injury, accident, seizure disorder, or developmental disability. Parents are often concerned about the skills their child cannot do. However, over-focusing on what your child cannot do can be a non-productive waste of energy.
MY THOUGHTS: Focus on what your child CAN DO. This will allow you to use your mental energy productively and decrease anticipatory anxiety that increases when we focus on things we cannot control. Know that the skills your child cannot do now are the skills they cannot do “yet”.
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Listen to the wisdom of other parents and caregivers who have been in your shoes for a while, they get it.
There are many parents who have been on this journey for a while who understand the challenges, stress, and triumphs. Reach out to other parents. Connect with parents who are also focused on solutions for their child and how to best manage the stress of parenting a child with special needs.
MY THOUGHTS: You are not alone. Actively seek out others and learn from each other.
Take care of yourself on this unexpected journey. Moms of children with special needs spend countless hours supporting their child through the anxiety, fear, and pain that accompanies unfamiliar medical and emotional challenges. They understand this marathon and the importance of staying strong and healthy. To learn more about how to establish your 15 ways to care for yourself, schedule a consultation with a mom who knows.
Contact Dr. Nancy Musarra for help. Email her at nancy@drnancymusarra.com or call 216-954-5665.
