Finding Balance

Finding Balance
By Susan Stroebel

One of the hardest jobs for any parent caring for a child with special needs is to find
balance. Parents are frequently operating on little sleep and raw emotions. Trying to
make great and practical choices under those circumstances can be very difficult. Even
simple decisions can become overwhelming. The next few paragraphs will give you
some practical ways to help you aim toward balance. I say “aim” because we never get
it perfect. When we get a chance to catch our breath and take a good look at how things
are going, we always find something that needs to be added, modified or deleted! It is a
constant evolution because people’s needs change over time.
The first thing I recommend is finding an hour a couple times a week just for you. If
you don’t have time to think or plan, you won’t be able to problem solve. If you have
a partner, you need to plan a block of time to problem solve together as well. This will
probably take a lot of creativity initially. Maybe it will be a long soak in the tub or a drive
with children strapped contented in their car seats. Maybe it will mean taking advantage
of your children’s naptime and letting the laundry go. (Some of you are laughing I’m sure
because these solutions are not remotely possible for you…be creative and come up with
what will work for you).
When you have time to think, start looking at your priorities. What are the non –
negotiable activities in your week? That would include, work, therapies, carpool etc…
Then look at your life priorities such as spending time with your kids, partner and
activities you do as a family such as church or sports activities. Next look at the things
that are negotiable in your life such as volunteer activities. Finally, think about the things
that you genuinely enjoy and would add if you had a clone to do the non-negotiable tasks
in your life.
When thinking of your child with special needs, think through their schedule. Are
there some activities that are negotiable? Are there other people who can help meet their
needs? Could friends or family lighten the load a bit? Could grandpa take them to one
therapy appointment a week? Could the family sit on the floor together a few minutes in
the evening to address some of the therapy “home work”? Also, look for ways to double
up. Most therapists are giving you homework so your children can complete “real life”
activities. Ask them to help you think about ways to do home work in real life ways.
Such as doing infant massage while giving the baby her bath or incorporating speech
games while driving in the car or at the grocery store. Also, try never to spend time just
sitting in a waiting room. Plan to spend that time with someone you love. Take a friend,
one of your other children or a family member. If what you really need is to indulge in
your favorite magazine, then treat yourself to that. You don’t really have time to “wait”
so try to use that time well. If you really feel like you are drowning in the “must do’s”
you MUST ask for more help. Call your service coordinator, pastor, women’s group or
any other resources. Let your personal support team brainstorm with you on how to make
your life more manageable. If “it takes a village to raise a (typical) child”, why should
your child be any different?
When your child is newly diagnosed, you may feel a compulsive need to spend 24
hours a day researching treatments, cures, trends, therapies, homeopathic remedies,
available services…. TRY to fight this urge! Your best bet will be to find a group of

parents in similar circumstances with children who are a little older than yours. They will
be able to guide you through the maze of possibilities and help you focus on the most
important things for your child. Some resources for that support will be listed at the end
of this article. I would recommend you still research things on your own, but limit the
time you spend so that you do not neglect your other priorities.
When looking at your typical children, it is sometimes harder to make their needs
an equal priority because they do not seem as pressing. Just remember that your special
needs child will always have the support of social services…a group home, a job coach
or independent living coach if needed. Your typical child will face adult life with only
the tools and training you were able to provide. Making them a priority is very important,
but does not necessarily require lots of additional time. Think about your own childhood.
Many of your fond memories might be of sharing household tasks. Mine include working
in the kitchen with my mother, polishing shoes with my dad and washing the car with my
dad. These tasks will be fun for your kids as long as you are mentally “in the moment”
with them and interested in what they have to say while you work.
When kids are small, an uninterrupted bedtime routine or bath routine will make
them feel special and secure. As they get older, maybe a trip to the Bagel shop every sat.
Morning or another favorite activity will keep them going. Try to plan some special time
according to their age. They just need to know that sometimes they are your number 1
priority too. Make it a goal to have special respite time with them occasionally. A “girls
night out” or a fishing trip now and then will help you both relax and really enjoy each
other.
Having a brother or sister with special needs is sometimes very difficult and has it’s
own set of emotions. We implemented a family philosophy that “all feelings are o.k.” we
just want to find productive ways to deal with them. We hope this has allowed our kids
to express their feelings instead of bottling them up. When kids get older, they become
aware that some of their feelings may be hurtful to you. When they reach that awareness,
a mentor or family friend might be a better resource for them. There are also special web
sites and workshops specifically for siblings. All are well worth the effort.
Meeting your partner’s needs is sometimes a bigger challenge. After all, they are
adults and aware of the pressures you face. Right? Unfortunately, if you aren’t tackling
your challenges as a team, you will both run out of steam and find yourself bitter and
angry. The divorce rate is very high among families with children with special needs so
you must protect that relationship if you want it to last! The key is really communication
and altering your expectations. A lot of compromises are necessary and during the early
years especially. Maybe you used to make nightly home cooked meals a priority. In order
to tackle all your other responsibilities, maybe you will have to institute a pizza night
or carry out night. Maybe instead of ironing shirts you take them to a laundry service.
Maybe your standard of “clean” needs to follow health and safety standards and not
Martha Stewarts. It is also important that you don’t judge each other’s needs. Each person
is perfectly unique in how much sleep they need, how much stress they can tolerate and
how they deal with grief. If you try to convince your partner to think and feel like you do,
you will both be left empty. Try just to respect each other’s needs and communicate your
own. Keep communicating on this level, and you should be able to give and take so that
you both feel appreciated and respected.

Finally, I will get on my soap- box about taking care of you. This is the hardest thing
to do because you always feel your needs will wait. It is a parent’s natural point of view. I
will share a strong personal opinion here. I have seen many parents’ come and go. I have
seen many parents who crash and burn and many who are still happy and thriving ten
years later. The common thread I seem to see is that parents who have a well- rounded
life do better over the long haul. Parents who let their child’s disability become the center
of their existence tend to become very miserable over time. Please remember that the best
thing you can do for your children and partner is stay healthy and happy. If you can do
that, you will have the strength to tackle life’s challenges. Remember balance is a GOAL.
It does not happen over night. Start with the awareness of what you need. Start making
choices that will lead you toward balance. Re evaluate how things are going often and
KEEP Communicating! Know you are not alone. Many families are striving for the same
things. Find strength and support in each other.