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WHEN A PARENT HAS MULTIPLE SCLEROSIS

There are many types of physical illness, but in our case we are talking about
Multiple Sclerosis. It is very hard for a parent to know what to tell, and
how to tell their children. Remember something very important. It is very
hard for us to accept the diagnosis, never mind our children. This will also
depend on the age of the child.

One thing that is very important, is to try to act like yourself as much as you
can. If your basic self is not there, then the changes you have to make will be
that much harder, not only for you, but your family as well. When it comes to
telling your children, you want to tell the child according to age, and how much
you think they can understand. It does not have to be a question-answer type of
thing. You want to figure out a way that they can ask you questions whenever
possible. Young children will usually let you know how much they can understand
and want to know. Small children have a way of telling you that they are upset,
because they don't know what is going on. Not knowing is more frightening than
knowing. Many times small children will act with much more anger than usual,
simply because something is bothering them. If this is happening to one of your
children, don't try to stop their anger, just help them head it in the right
direction. Let them know that you have experienced the same kind of anger. You
have learned to let it out in a different way because you are older and have had
more experience. Find out if your child is scared of your MS. Let them know that
it has scared you many times too.

When you were diagnosed with MS, it was not easy for you to take, it was very hard.
They need to know this so they should not be afraid, to be afraid. To be sad
sometimes is alright too. You would be surprised at how much small children want
to, and will help you once they know. It is a privilege to be able to help
mommy/daddy with whatever they need. They will often think of their parent as
someone very special, because they are sick and being a great parent at the same
time. Sometimes you have a bigger problem with teenagers. Its a much harder age
group, and a time in their lives where what their peers think of them and their
family means a lot. One thing that all of us try to do, is to basically be our-
selves as much as we can. If your basic self is not there, then the changes you
have to make will be that much more difficult. Not only for you, but the people
around you.

It is not easy for us to accept the diagnosis of Multiple Sclerosis, never mind for
children of any age. It seems to be easier to help the younger children, because
they are that much more eager to help wherever they can.

With teenagers, you are worrying about fitting in with your friends, so instead
you don't tell them anything. There are other solutions, you just have to want to
do it, and I know thats not easy. To learn any lesson in life is not easy. You
would have to find a way to introduce your parent to your friends. It might be
easier to tell them this way. Invite them in for snacks, and show them at the
same time, it might make it easier for your parent too. Lets face it, people are
afraid of what they don't kniow. When I was diagnosed with MS, it was as if they
told me I had a cold. I WAS DEAD WRONG. I HAD A LOT OF HARD LESSONS TO LEARN.

If you think about it, the needs of teenagers are very much like our own. The
problem here is that we don't see it. When you are trying just to be a kid, its
really hard when you are worrying if your parent may have fallen, or anything
that could have happened because of the MS. You know that medical expenses are
much higher, and rather than ask for money, they try to get a job instead. This
will often show itself in their grades at school. They will not always stay as
good as they always were.

Another thing is that many times a teacher or anyone, will ask about your parent
and leave you out. You are still part of the family, and doing what you can for
everyone. If you have a parent with MS, don't try to go it alone, there are
support groups where the people are wearing the same shoes as you are.

We tend to always talk about the bad in teenagers. Did it ever occur to anyone
to talk about the good? The MS Society has a support group for teenagers. Here
they can talk with other teenagers in the same boat. As with other support
groups, here you can be yourself, and act yourself which is something you cannot
do at home. At home, you feel a bit out of place. All of the kids in these
groups all agreed that there should be at least two back up systems for the
parent who has MS while they are at school. This would take away a great deal of
stress, and let them concentrate on their schoolwork. One boy had to learn how
to cook at the age of 12, and became a pretty good one at that. It reminded me of
my father, who would burn a pot of boiling water. It was doing these extra things
at home, that made some kids realize the pain that their parent was going through,
that they had never noticed before.

Instead of kids just saying that my mother/father has MS, give them credit for not
just sitting back, give them credit for doing something about it. They wrote
letters to the MS Society, which in turn, helped them and told them of other
things they could do. A lot of teenagers started volunteering, not only to help
people that are stuck at home, but to take some of them to the stores, or go to the
stores for them. They could have done nothing, which is what most people would
expect them to do. Instead, they started things like bike tours etc. Many areas
did not have anything like this. So by doing bike tours, and starting things
similar to that, they could do things that they enjoyed, and raise money for MS at
the same time.

We complain about the teenagers that always cause trouble,
why don't we sit back and commend the teenagers who got
up to help.

What do we do when our friends don't understand why our mother/father has MS and can
be perky one day, and need a wheelchair the next. Or why they can't come over
because our parent doesn't feel well. Not everyone knows, that sometimes the
smallest thing can upset them. They can be depressed one minute, and the next
minute they are feeling much better. Their friends don't understand why they can't
get angry at their parent. They are both saying that it was neither of their
faults. The usual things that teenagers may do with their parents, or younger
children too, can no longer be done. Its not just teenagers that feel this way,
but anyone, you feel like you are alone. I know sometimes, and I do this myself (I
have MS), is cry. It does not solve the problem, but it does help to get some
emotions out, which otherwise would have been kept bottled up inside. Many teen-
agers make their own world. Again, this is where Support Groups come in handy.
One just for teenagers.

Many teenagers, would laugh at a handicapped person that they saw go by. A lot
of their friends can no longer understand why some don't do it any more. How can
you laugh at someone who is sick. This is what all people have to understand.
Handicapped people are sick, even if you can't see it. Sometimes the hurt is on the
inside. People like this were either born that way, or have a disease. One thing
people should know is that because someone is different from us, does not mean
they are contagious, or should be treated differently. A thought that hurts
handicapped people. They did not ask to be that way. Many people have to deal
with their illness, and deal with children of any age at the same time. Its not
something that's easy to do.

It would be nice, if it were easy to educate people who are not handicapped.

Why should all kids, especially teenagers be thought of as brats, because of the
few that act like brats on an occasion such as Halloween. If a person went around
the world in a wheelchair, people would thing they were doing it for sympathy.
Does anyone ever think that because they are handicapped, they are entitled to fun
too!!!!!

Lets face it, who would be in a wheelchair if they didn't have to be. Let me tell
you from experience, its no fun to have to use it.

It would be so nice if it were easy to educate people.

Eileen (Lobosgirl)

Eileen Lukeman and Richard Tanner

FL.

Eileen(Lobosgirl) and Richard (RET1000) both at aol.com

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Page Updated Mon Mar 9, 2009 11:28am EST