Parenting Children with Exceptions: A Survival Guide
Parenting a child with exceptions is tremendously challenging. Only those who have experienced it, fully understand the unique struggles and small victories. Parenting, in general, is not for the faint of heart. A scientific study by Smith et al. (2010) found that mothers of children with autism had the same stress levels as combat soldiers. The burden on families with children with special needs are enormous. Whether your child has a developmental disability, physical disability, learning disability, is neurodivergent, gifted, or has unique challenges, this blog is for you!
As a mother of two children with very different exceptions and a student psychotherapist, I wanted to share some tips to protect your mental health.
1. Grief doesn’t get smaller over time. You may feel oddly sad watching your friends’ typically developing children play and do normal childhood things. You may feel a twinge of jealousy hearing about your friends’ child’s milestones and feel left out. You will likely experience and re-experience the loss of your dreams, hopes, and expectations for your child, yourself, and your family. It is okay to grieve, cry, scream, and go through all the normal emotions of the grieving process. As with most grief, it is extremely personal, and it is a process that doesn’t always follow a linear order. The five stages of grief by Kubler Ross and Kessler are denial, anger, bargaining, depression, and acceptance. Another myth about grief is that it shrinks over time. It does not shrink. Over time, our container, which holds the grief, grows with new experiences and life. The next time you feel sad, remember that it is okay to grieve.
2. Celebrate inchstones. You may have heard about developmental milestones and the benchmarks that chilren reach at different ages and stages, such as smiling, crawling, walking, saying their first word, riding a bike etc. Some of our children will never reach those milestones, or it will take a huge amount of medical intervention, hours of therapy, doctor appointments, surgeries, and time to reach them. I like the term “inchstones” which are the smaller in-between stages of milestones. Celebrate every inchstone! Celebrate every win! Celebrating every accomplishment of your child is a great way to build their confidence and make the tough journey more enjoyable.
3. Find your tribe. Relationships naturally change over time, but special needs parents find that some friendships do not make it through this stress. Some friends may not understand why you don’t have time to go for coffee, and that you are too busy in doctor appointments, researching medical information, doing therapy at home, or resting because you were up all night. They may not feel you have the same things in common anymore, or they may be brutally judgemental. There will be some precious few friends who take the time to understand your child’s condition, invite you along anyway, and seek commonality with you. This is your tribe. You may meet parents online who share your child’s diagnosis and become the other allies in your life. That is your tribe. You may be very blessed to find other parents with exceptionalities with whom both the children and adults get along. This is your forever tribe! Once you find your tribe, encourage and build one another up, and be a safe place for other parents with children with special needs to join. Share the journey, the resources, the burden, and the joys!
4. Find a social worker. Find the social worker at your child’s hospital and ask them for help accessing resources! They often help parents fill out the endless forms and applications for funding, inform you of more funding options, point you toward resources, recreational options, and help you navigate life. Many resources are not compiled in a convenient one-stop site. A social worker and other experienced parents can help you access various resources.
5. Bring others along. As you educate yourself on your child’s diagnosis, be sure to include your family and friends on the journey with you. Invite a parent, brother, or sister to a therapy session and train them on how to care for your child. This open dialogue and education route may avoid hurtful and uninformed comments later on. When other children ask why your child is different, help them understand the differences, find similarities, and speak positively about your child. “Noah uses this wheelchair to help him get around, but he is a typical 5-year-old who also loves cars, and he is doing very well steering his own chair.” This information helps other children and your own child learn about their diagnosis, who they are, and how to share that with others.
6. Remember self-compassion. As parents we want the best for our children. There is so much to be done for children with special needs. We often feel overwhelmed, guilty about not doing enough, exhausted from lack of sleep, and may even have caregiver burnout. Remember to be kind and compassionate to yourself. You are doing your best. Even if you can’t always take a break when you want to, at least give yourself the mental break from guilt, pressure, and responsibilities. Find a phrase that reinforces all you are doing such as “I have done so much, today”, “I am doing my best”, “We are strong”. Remember to celebrate all that you are learning, doing, and achieving. Speak to yourself kindly and compassionately as you acknowledge your time well spent.
7. Attend to your marriage. If you are married, be sure to spend time with your partner. It is easier than it sounds when it is hard to find a babysitter. Sometimes it is a quick coffee together on the sofa after the kids fall asleep and calling it a date, or a few minutes to talk before bedtime. I know it is difficult but your partner is your best friend, and this relationship can be strained with so many demands on both parents. Find a way to lighten each other’s load through your strengths, coordination of schedules, service to the other, and take some time away for a date. Focus on your partner and their needs, too, not just your child. A strong marriage is so important for children.
8. Don’t worry. This is an easy phrase to say but a hard task to master. When life brings so many challenges to people with special needs, it is important to not let your mind spiral into a million future scenarios, catastrophize, or worry about things that have not yet happened. Worry is not only unproductive but an unhealthy habit. It requires the discipline of your thoughts and mind. Choose to deal with the future through planning, creativity, research, networking, and optimism.
9. Mindfulness and spirituality. Find a way to connect with nature, your spirituality, and use mindfulness to help you appreciate each moment. Walks outside can be very therapeutic. Reconnecting to your spiritual beliefs may provide you with strength and comfort. Mindfulness is a word often used in therapy and in society today. It is a way of being fully present in the moment, often through the use of our five senses. There are some great blogs on this site about mindfulness you can read.
10. Prioritize yourself. Although the focus is often on your child and their needs, the parents are often the unsung heroes in the background. You may not have enough hours in the day, nor the money, to get away for a spa day, but that is not what I am referring to. I am talking about checking in with yourself, considering how you feel, what you need, and taking steps to meet those needs. Your child depends on you to be happy and strong. Invest in yourself and make yourself a priority. Don’t feel guilty about indulging in a nap or asking for help, it is important that you are refreshed enough to carry the heavy load you do!
Parenting a child with special needs may be the toughest job you will ever have, but it may also be the most rewarding. You will experience new things, meet amazing people, see compassion at work, and have incredible opportunities that you would never would have known if not for your child’s diagnosis. If you are struggling with anxiety, depression, caregiver burnout, your marriage, or accepting your child’s diagnosis, there is always someone with a listening ear at Fancy Therapy. The Affordable Therapy Program with reduced rates to see a student psychotherapist may be just right for you.
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