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Q and A: couple's issues
Question 1. I have 2 boys,
ages 9 and almost 12. After almost 8 years of seeing every medical doctor and
specialty available, we STILL don't have a definitive diagnosis for the younger
boy. He suffered from severe speech delays and after 8 years of speech, is able
to converse and be understood. He still has bowel toileting accidents, despite
the work of psychologists,
gastroenterologists, and therapists. His current problem is stealing scissors at
school and getting into trouble there, which shocks us since he has such a sweet
disposition usually.
The older boy has absence seizures and is almost keeping up in a fast paced
private school, but with lots of help from us and the school staff. We thought
he had ADD, but the seizures were spotted by a sharp doctor at a regular check
up. He needs lots of aid with organizational skills.
I am writing you because I am continually depressed about managing all I have to
manage everyday. I am very active in our local special ed community, am on a
regular exercise program, but am so down about all this I can't sleep or
function well anymore. Any suggestions? No matter what I do with these tough
kids, there's always another major problem to address. And husbands work long
hours and aren't much help.
Response: You've obviously had a long struggle, and now it sounds like
sometimes you are running out of gas. Fortunately you are not alone. Many
children who have special needs don't fit neatly into any diagnostic category.
Their needs are complex and illusive, and sometimes their conditions are
invisible. Unfortunately, parents, and mothers in particular, are all too often
and sadly in the predicament you describe. Searching to find the cause of our
child's developmental problems and the best treatment is a long journey.
Frequently our own needs as individuals and couples get lost in the struggle.
Let me share a few general points from which you might find comfort and
direction:
1. It sounds like there isn't much joy in your life. Your children have
conditions that require lots of care and supervision on your part. Going to the
gym is a great start and a good “stress buster,” but it isn't enough. Being
involved in the special education community is also good for support and
information. But your life sounds like a constant battle from your description.
What do you do for fun and enjoyment? When taking care of children with special
needs and advocating for services for them consumes your life, you may
eventually start to run out of gas unless your life is more balanced. As hard as
it may sound at first, start to think about taking care of yourself. What do you
need to feel better?
Becoming a parent for the first time changes our identity forever. Furthermore,
when a child is born with or develops some special medical needs, then your life
veers sharply from what you had expected it to be. It takes time to sort this
stuff out. I would urge you to be kind to yourself about how difficult this can
be. And it can be more difficult when your children look normal and are in
relatively good health, for in this situation a parent doesn't get the kind of
sympathy that is spontaneously evoked when a child has a visibly disabling
condition.
RN
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