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What Happens When Online Support Groups Are NOT Supportive?

March 10, 2009

At the same Facebook support group where I read the beautiful piece that I have shared with you in the post below, I read this:

Prevention:

Mothers can help prevent CP before and during pregnancy by adopting and maintaining healthy habits.
* Eat nutritious foods.
* Do not smoke.
* Avoid exposure to harmful substances such as methyl mercury and certain medications.
* See your health professional regularly

I immediately sent this email to the moderator of the group:

Hi

You are listed as the admin of the FB group “I have Cerebral Palsy. My Friend or Family Member Has CP.’

You have some very useful information on your group description, BUT I have to complain about this bit:

Prevention:
Mothers can help prevent CP before and during pregnancy by adopting and maintaining healthy habits.
* Eat nutritious foods.
* Do not smoke.
* Avoid exposure to harmful substances such as methyl mercury and certain medications.
* See your health professional regularly.

I have CP and I also have many friends who do, and from what I have heard none of our mothers could have done anything to prevent it-certainly nothing from that list. From what I know of CP the earliest it can happen is during birth-not pregnancy. I imagine that many mothers of young people with CP would find that information very very offensive and painful to read, and those who are not yet used to the idea of having a special child and who have come to your group looking for support would, I imagine, feel very guilty after reading that list.

I joined your group thinking that it was a support group- not a place where special mothers- the people who need support more than anyone else in a special child’s life- would be given completely false information or judged in such an unfair way for something they could not possibly have prevented.

I don’t know where you got the information from, but I request that you remove it from your group description as soon as possible. Thank you.

Some very important facts about Cerebral Palsy. As I have said in the email, from what I know of it the earliest it can start is during childbirth. It doesn’t start during pregnancy, so there is no way that it can be detected during pregnancy, and more importantly, there is nothing that can be done during pregnancy to prevent it.

The group is intended, as it’s name suggests, for people who have Cerebral Palsy and for friends and family members of people who have Cerebral Palsy. I wrote that email because if a support group like this one  provides members with such completely false information, any of these terrible things can happen:

1.   Mothers of children with CP could be made to feel guilty at the thought that they could somehow have prevented their child’s lifelong disability. This particularly applies, I think, to mothers whose disabled children are very young and who may not yet be used to having a child with a disability. These mothers may not yet know enough about the causes of CP to know how untrue the information is.  They may be experiencing perfectly natural feelings of confusion, which will only be made worse if they are provided with untrue information. Guilt and lies are the last things mothers of disabled children need.

2. Mothers of older children with CP who may have done any of those things during pregnancy, particularly if they did not know they were pregnant, could be made to feel that they are being unfairly judged by the provider of the information.

3.This false information may provide false hope to pregnant women who, believing it to be true, may take all of these precautions throughout pregnancy on the advice of a group like this one, and still end up having a child who is born with CP.

4 Family members of the child with CP may read this information, believe it and unfairly blame the child’s mother for somehow causing the child’s disability. This could affect relationships within the family- particularly between the child’s parents, or even between the mother and any able-bodied children she may have.

5. A child with CP who does not understand the causes of their disability may believe the untrue information and start to blame and resent their mother for somehow causing their disability. This will affect this most important relationship.

I have not yet received any response from the moderator of the support group, though I will keep you updated if I do get one. The information is still posted on the group page.I am still hoping that it will be removed.

Mothers of special children need all the support they can get- forever. Support groups like this one should check their information before posting it as fact. They should be supportive, not judgemental. CP cannot be prevented, any more than it can be cured. It is one of those terrible, unfortunate things that just happens.

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