Family Issues Archives

Isolation, Depression, Fatigue - Asking for Help
By Nancy Miller, Ph.D.

What a cheery topic, you're probably thinking! Well, I was looking back through a lot of the e-mails we've received and the topics parents have posted on the bulletin boards, and even though the ages and diagnoses of the children cover a wide range, there is often a common theme that runs through many parents' concerns: the extra time, care, and effort required to raise some children with a disability often creates fatigue and depression in the parent (usually the Mom?) that turns into a vicious circle that's hard to break out of. When you're too tired and too blue to carry on a social life, you become isolated, which of course makes you more depressed, etc.

The very parents who really need a lot of social support and actual physical help from other people are not getting it because they are:

a) too tired to find someone, and then to train someone, and maybe don't think they even know someone;

b) too depressed to think they're worthy of getting any help (guilt often thrives in this kind of situation!), feeling hopeless that anyone else could make things any easier;

c) too cut off from others to feel comfortable asking anyone to help;

d) unable to feel safe leaving their child with someone else.

These are all very understandable feelings that many parents have. But they are dead-end feelings, and the deeper you get into feeling alone, the harder it is to have the energy to get out of them.

The reality is that many parents DO have a stressful, difficult situation with their child. We know that:

• many children require extra medical care, such as suctioning, taking medications, going to doctor's offices, going for x-rays, shots, tests;

• there is often extra concern about a child's health status: unpredictable seizures, or too-frequent colds and other infections, allergies, medication reactions...

Many kids need extra time to learn the typical daily activities that most kids master with ease: taking a bath, getting dressed, eating solid foods, going for a walk, getting in the car, going to bed... A child with developmental delays often needs to practice a new skill many more times than a typical child, and to have it broken down into tiny steps, and everyone has to be consistent in teaching a child how to do a new task. A child with motor delays may catch on to the new behavior quickly, but take a long time to perform it... if walking is delayed, or braces, a walker, or a wheelchair are used, then there is transit time, and getting-in and getting-out time - all of which require the parent to learn to slow his or her pace and expectations accordingly. If you're the kind of parent who is used to dashing through the day (yes, and even the snow), you have to learn a new style of adapting to your child's pace.

Those are the Problems, now what are the Solutions, you ask? This is a complicated topic, and each family has a unique situation with its own problems - financial, other kids, marital problems, in-law issues, finding resources, etc...

But the bottom line is that if you are the Primary Caregiving Parent for your child, then it is up to you to learn what your limits are, and to think about what resources you need to improve your state of mind and body.

Some parents just keep going like the Energizer Bunny until they crash: they get sick, or hurt their child, or leave their marriage. You are probably your child's most important person in his or her life, and your most important obligation to your child is to be in the mental and physical state to provide the best care you can. That means: You must stay healthy: you must get enough rest; you must exercise; you must laugh every day; you must have another adult to talk to - either in person, on the phone, or on the Internet. And all talk should NOT be about your negative feelings... you need people to inspire you, to make you smile, to teach you something new, to share ideas and information with. If you are married, you must communicate with your spouse about the pressures, the fatigue, the isolation... you must ask for help if you need it.

Some parents I talk to say they feel depressed because no one offers to help... The reality is, there are very few people who are going to come up to you and ask if they can take over some of your tasks, or worries... and if you have a child with a disability, some people may think they aren't ABLE to help because they are afraid of what your child may need that they can't help with!!

Isolation, depression, fatigue, stress - they're a vicious circle of negative feelings that feed on each other. You are the only one who can break through the circle. It's not easy sometimes; it helps to have a partner, a friend, a family member who can help you set some realistic goals and work toward them.

Nobody can understand what your life is like. Nobody fully appreciates what you have to do every day. Nobody is going to offer to take over or help out - sometimes that's because they think you're doing such a good job that no one could do as well!! And they're right, I bet...

 

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