A Virtual Misfits Club for Parents of Children with Disabilities?

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A couple of weeks ago, Sara Pot asked me whether we might start some sort of online discussion group for parents of children with disabilities. Sara and her husband Ralph have four children, two of whom "are following a unique course of development and growth - often referred to as global developmental delay. There is no name for our two younger girls' condition, but they are similar to each other."

In explaining her idea, she wrote, " It is more obvious than ever the importance of developing a virtual community for parents like us. In our immediate community, there is a children's treatment centre, and there is the promise of parent support from our church, friends, and family. Yet, we would love to experience and share with other CRC parents of children with special needs in Canada/US. Maybe there's another family out there like us -with two kids that have no known diagnosis. We don't fit into the Autism or Down Syndrome groups; we are part of a misfits club. Certainly, we are connecting with others in our local community, but we miss connecting with others who share a similar faith story."

What do you think? Would you like to connect with other parents who share a similar faith story? Sara began a discussion on our forum page, but only a couple people responded yet. I hope you'll post a comment on the forum too, especially if you are raising a child who has a disability.

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Hi mark,

 I think that a p&p network site would be great. I think we should increase the scope of who would be welcome. Some people just want to be involved and others have disability in the parental figure that would help balance out the base of wisdom. Great idea for a ministry.

Thanks,   Ken

Guide

Ken, thanks for your comment. We'll have to see how this evolves. Perhaps a broader focus for a group might be good, or perhaps there may be interest in different groups. Right now Sara is exploring a possibility, and I'm giving her a little help with that exploration. Blessings, Mark

I work with kids with learning disabilities daily and see that social disabilities often accompany learning disabilities.  Hand in hand with these disabilities is bullying.  These two topics currently on this site fit together.  We do a lot of educating in our churches but the people doing the educating are not always aware of the learning/ social struggles of their students.  We should do more educating and have a good method of communicating the needs of our children to the teachers and youth leaders who spend time with them.   This is a great forum for such discussion.

That is a great issue to discuss openly. My children are healthy but because of  my chronic illness they  seek out disenfranchised peers to at least validate them to their friends. We have always talked about  fairness and social justice during course of my illness. They see  the lack of respect that happens to social misfits like me. They realise if it painful to adults then their peers are hurting too.

 They also see alot of adults bullying kids from cops to teachers. This could be a great discussion to bring kids into also.

Thanks emogirl for raising this subject ,

Ken

I am a parent of two sons with disabilities from a VERY rare genetic syndrome MPSVI (Maroteaux-Lamy).  We were in the "misfit" group without a diagnosis from 1983 when my oldest son was born to 2000 when the current geneticist did some world-wide research and entered us in a blind study in Australia.  Both boys have similar and different disabilities associated with the syndrome.  After the diagnosis, I was very lucky to find our MPS forum.  This forum was started by a family whose child had another syndrome in the MPS family group (MPS diagnosis of 1 to 7 make up the group).  We have separate discussion items within the forum ranging from "Day to Day"; "New Research"; Medical Treatments"; Education; Siblings-for the younger members of the families to talk to each other without the adults crashing; and a section that is only open to the families whose children have become angels.  It is a great place for support, ideas, things that have worked, and those that the children have had problems with.  We also have a group on facebook. 

In terms of education, we also help the parents to advocate for their children's needs and rights in the schools IEP sessions and holding the schools accountable for following the IEPs.

When you are given a diagnosis that you have never heard of or experience a trauma that causes a disability you must do your own research because the "experts" will tell you the most common, the "textbook", and the most financially feasible for them-not neceesarily for the betterment of the situation for the individual.  Our geneticist made a statement about our MPS diagnosis (and that is why he is still seen by us instead of being switched like three of the boys' cardiologists): MPS did not read the textbook.  That is why the boys fit most of the textbook criteria but not all.

Forums can be a great source of support and information but they must be monitored as our family forum is.  There are some cruel bullies out there that like to fake having a disability so that they can comment about individuals with disabilities in an emotional and mentally abusive way.  We have had two or three try it on our forum and the four/five families that now monitor if have been able to delete the comments and ban the individuals shortly after the first abusive comments appeared.

God Bless

Guide

Darla, thanks for your comments. It sounds as if the journey with disability is especially lonely for your family. God's blessing and strength! Mark

Hi Darla,

  I can relate to the you have to take charge when it comes to medical care but I find the insurance to be a bigger hurdle than the experts. But either way it is painful and exhausting.

   I have never experienced  or at least did not know about fake disabled people on the support sites. That sounds pretty disturbing that someone would do that.  Nothing surprises me though, there are a lot of angry people out there.

Thanks for story,

Ken