Color & Control:

Finding a New Normal

“How are you doing with all of this?” I once asked a friend whose toddler had had an accident and was suddenly experiencing seizures and cerebral palsy.

Adjusting to a Life of Special Needs

By Robin Wisner 

“How are you doing with all of this?” I once asked a friend whose toddler had had an accident and was suddenly experiencing seizures and cerebral palsy. I will never forget her reply: “I guess you find a new normal.” Little did I know at the time that I would have to find my own “new normal” when learning to cope with my own sons and their various disabilities.

Having a child with special needs is intense. Everything you thought you knew about parenting will change. All new parents have an idea in their heads about what having a child will feel like. Many of these ideas are pie-in-the-sky dreams that change when the reality of a red-faced, crying newborn arrives on the scene. But when this new arrival also begins to present with special needs, the dreams really change.

The constant need to recalibrate
There is an initial time of adjustment to the idea that your child has a disability or medical problem, but we continue to face these adjustments throughout our child’s lifetime. When our children turn 12, we may have a resurgence of feelings as we realize that friends who have children the same age are now able to leave their child home alone for periods of time, or even have them babysit a younger sibling, and we can’t. In high school, when other kids are competing in sports, our child with special needs may instead need to be shuttled to occupational and physical therapy. When other kids are learning to drive themselves to their favourite teen hangout, our children may need a wheelchair lift van when they go anywhere, and perhaps even help to eat or visit the restroom. At times, this can affect us emotionally even more than it does our kids.

Is it grief?
What do we do when we feel these twinges? The real name for needing to accustom ourselves to our situation is grief. Our kids are very much alive, but grief still describes what is happening to us in these moments as we compare the “normal” everyone else experiences with the “new normal” we face based on the special needs of our children.

When people grieve, they face a variety of feelings, sometimes all at once. Fear of the future, anger, sadness, denial, emotional numbness or wanting to hide from the situation are all reasonable feelings to have. And yet, we have a life to live and kids who need us. Somehow, we need to find solutions and levels of comfort in our daily lives.

Day-to-day coping strategies
Finding a new normal is about seeking balance in the midst of circumstances that we didn’t expect and that are different from the situation others are in. Our feelings are valid and we need time to experience them, but we also need to juggle our everyday lives of being caregivers and dealing with our children’s medical and educational needs. Here are some tips that may help:

• Find others who are in similar circumstances. Being able to talk with others who can relate to your parenting experiences can be priceless! Whether it’s a formal support group or just a few parents who get together for dinner every so often, having someone you can talk to who can relate to your experiences helps temper the sadness you may feel when comparing your situation to others’.

• Figure out what has helped you manage in the past, and see how these strategies can help you now. For me, it helps to know as much as I can about what is likely to happen. Going online to research an upcoming surgery or find out how Tourette’s syndrome may change with adolescence provides me with a sense of comfort, as I know better what to expect. Coping skills can also come from something that has nothing to do with your child’s special needs. Gardening and crafts are activities that can have me feeling great in no time. Organizing a closet, or some other task that brings order to chaos, can also help me to feel better.

• Identify how you are feeling, and accept it. Whatever you feel, it’s okay to feel it. Your feelings make you human; they don’t make you a good parent or a bad one. Remind yourself of the line between feeling a feeling and doing something wrong as a result. We teach this to our kids all the time, but often need a simple reminder ourselves. It’s okay to feel angry, but it’s not okay to hurt people because you are angry. (Haven’t you said this to your kids before?) It’s okay to feel sad, but it’s not okay to lock yourself in the house and not go outside because you are sad. Have a little fun with these statements if you like. “It’s okay to feel sad, but it’s not okay to eat a bag of chocolates, a carton of ice cream and scribble on the walls of the house with a magic marker because I’m feeling sad.”

• If you need help, get it. You may need more time to yourself; if so, ask someone to help out. Even if time to yourself means having an hour alone while someone watches your child, make it happen: You and your child will both benefit. If you need help to work out your feelings, look for a counsellor or therapist. Talk to your doctor if your feelings get in the way of caring for your child or going to work. If you feel “stuck,” getting a professional involved in helping you can be the best thing that happens to you and to your family.

• Give yourself permission to not be “super-parent” for a while. Parents of kids with special needs do so many things, and do them well, that sometimes we put unreasonable expectations on ourselves. We read articles about amazing parents who do everything possible to help their special needs child—maybe they run marathons, win beauty pageants and go back to college all at the same time. (I’m exaggerating here, but you get the idea.) It’s no wonder if we feel inadequate. We need to remember that sometimes it’s enough to just get through the day.

• Find ways to laugh. Poke fun at yourself (in a kind way). Exaggerate a little. Watch a funny movie and laugh until you cry. Both the laughing and the crying may be good for you! Treat yourself to a daily dose of humour.

As you continue on your parenting journey with a child with special needs, remember that from time to time you will need to find your own “new normal.” Making that adjustment to life as it is now (not what it used to be or what you hoped it would be) can make all the difference in the world. So here’s to acceptance of your own, private situation: May it leave you refreshed and confident.

Robin Wisner is mom to four boys, now teenagers and young adults, three of whom have disabilities. 


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