What does it mean to survive as a special needs parent? That can be a tricky question to answer as every family’s special needs and disability story is unique. Even so, our families have much in common. With that in mind guest blogger Trish Shaeffer describes what survival often means for many of us.
What does it mean to survive as a special needs parent? You may have learned your child had special needs even before he was born through prenatal diagnosis. You may have learned it abruptly and traumatically at birth or in stages as your child grew and developed. That’s why surviving is different for everyone.
Surviving is coping. Coping is doing what you have to do one problem at a time. Sometimes you may feel like you’re are trying to empty a flooding boat with one bucket at. You make decisions without feeling very informed or confident. You deal with specialist in fields you’ve never even heard of. Coping is dealing with problems and getting by. Coping always feels like you are just keeping up with what you have to do, with little energy for getting ahead of your problems.
Surviving is reacting. Reacting drains your energy and diminishes your feeling of control. You have no sense of direction of the events in your life. You are always trying to figure out what’s going on and what to do next. Your reactions may range from confusion to fear to incompetence. They may be accompanied by feelings of grief, anger, guilt, and helplessness. You may find that the services your child needs are not readily available, that family members or friends may not initially support you, or that you child’s problems are more extensive then you anticipated.
The reactions of surviving are normal and often necessary. They are not bad, wrong, or weak. They are how many people feel upon hearing sad or frightening news. You may have experienced all, some, or none of the following reactions.
- Shock. Surviving begins with a state of shock, numbness, disbelief, or disorientation. If you are in shock, everything seems unreal. This is a normal reaction.
- Fatigue. You may feel tired from lack of sleep, restless sleep, or the worries you carry around inside. You go through the motions and try to keep going. The only thing you look forward to is sleep.
- Physical symptoms. You may experience headaches, lightheadedness, stomach aches, chest pains, or loss of appetite. Stress can cause these physical problems or make them worse. They must be taken seriously, so talk to your doctor.
- Feelings of weakness, fragility, and vulnerability. Unpredictable emotions and behaviors can make you feel weak or vulnerable. You may cope well some days and then burst into tears in the grocery line.
- Grief. You may be grieving the loss of the dreams you had for your child, yourself, your spouse, and your family. Your expectations about your child’s future are replaced by fear and confusion. You grieve for your child who deserves the same chances in life as anyone.
- Sense of helplessness and loneliness. Surviving is an intensely personal journey. You may not be sure what to say to people, and you don’t know what they expect from you. Sometimes it’s hard to know when and how to turn to others for support.
- Sadness. Sadness is a normal emotional reaction to events, thoughts, stories, or memories that remind you of loss.
- Fear. You may experience fear for your child’s health, for your child’s development, and for how her condition will affect your family. Fears may race through your mind about whether you can afford this, what insurance will cover, or how you will find the right services for your child.
- Worry. You may worry about the future, about what to do next, about doing the wrong thing, or failing to do the right thing. You worry about your partner, your other children, and you worry about money. And you worry that you worry too much, but you cannot shut off your brain.
- Guilt. Feeling responsible for your child’s problem is one way of trying to understand what went wrong. It’s taking the blame because someone needs to be blamed.
- Anger. Anger can take many forms. You may feel a general sense of “Why me?” Or you may feel resentment and envy, especially toward those who have typical children.
- To ease the survival process, you may need to weep, yell, and feel very sorry for your child and yourself for a while. Knowing that these feelings are normal part of the process can help you reach out to other parents in similar situations. Remember everyone is different. Some parents adapt easily and some do not.
What does it mean to survive as a special needs parent? It means being there for each other, and remembering that life does go on. It means reminding yourself that the process of surviving is normal and necessary and that you will pass through it.
Trish Shaeffer is the mom of 3 active boys with special needs. She’s a peer supporter for Parent to Parent and volunteers with the United Cerebral Palsy Network, Special Olympics, and the United Way. She’s also an equine volunteer at Leg Up Farm. She’s married to her best friend and biggest supporter, Chris Schaeffer.
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