Friday, March 19, 2010

Support Groups

I have actually debated many times about posting this topic, but by God this is my blog and it is what is on my mind right now.  So here goes nothing.  I am a member of three support groups for Infantile Scoliosis.  I have taken heat from family and friends alike for putting to much weight on the people I meet on these groups.  It is hard, you want to meet and talk to people who are traveling your same road, but you also want your family to feel a part of the journey.  It is a narrow path and you don't want to have people telling you stop talking about all this and yet it is very nice to have someone say I know exactly what you are talking about.  I have made really good friends on this journey from all the support groups.  I have also encountered those people my family have warned me about on this path.  So here is the blog about my encounter with support and not supportive groups. 
           My first encounter with a "support group" came shortly after William's diagnosis and immediately before his first cast.  I met 4 women from that group who will forever be a part of my life.  Cara, Amy and Chrissy are my chi-town posse! Then I have my St. Louis Sista Christina who has our little Drueman who is a month older to the day then William.  We are the 5 musketeers who are taking Chicago/St. Louis casting by storm.  They are my shoulder and such when we have poop up the back or puke down the front.  They have been there done that and sometimes on the same day as us.  Love my girls and don't want to discount their blessing when referring to this group.  That would be one of the last blessings I have gotten from this group.  This is a long story so leave now if you have no energy! This first "support" group has proven to be a disappointment to me.  There are good people on there, but there are also many people with their own agendas on that group.  Topics that should have been open for discussion are really open for one way of thinking.  This group is run by a not for profit who is supporting one way of thinking and I am not that one way type of girl.  Casting is not a one size fits all type of treatment.  It is treatment run by surgeons all of whom are working to perfect the technique modifying the cast to the specifics of your child.  This in my opinion is what makes casting so unique.  You childs care is designed specifically for your childs curve.  Higher, lower, need for shoulder support, no shoulder support.  William has had 2 casts and each with different results, each with different cut outs, very unique to William.  I fully support this diversity.  It is what makes the process individualized.  I have been taught humility in this process and given an open mind by so many of my friends.  So back to the point.  This first group is backed by an outreach program with an agenda to get all kids to "approved" centers with the "right" table and the "correct cast".  This means there are maybe 10 centers who have been trained by Dr. Mehta, the doctor from England who published the modifications to the Risser cast. So this was my first encounter with information on casting.  I spent about a month listening to how my child should have this and that and if not he would have deformity and destruction.  Scared the living crap out of me.  Then I started looking at pictures of other kids, reading how each center does things, talking to other experts and no one referred to things the same way as this group other than the group members.  Topics would come up ranging from taking off the cast, raising money for your center, padding the cast, clothing to wear, etc... I learned quickly that your opinion needed to match that of a select group of people or you would be accused of posting harmful information.  Tensions escalated and many of my friends were removed from this group for being hostile.  This disease is hostile and if something works for their kids and is approved by their doctors, it isn't harmful, it is different.  I was made to feel selfish for raising money for my center and not for the outreach program.  I still can't put my head around that.  Yes Shriners has endowments for billions of dollars, but they support many centers with annual expenses that are far outweighing the donations coming in.  I plan to continue to support my center in an effort to allow my son to be cared for his entire childhood and the opportunity for other children to benefit from this same care.  I have stayed on this group, but I don't post my opinion unless my friends are being attacked without the benefit of defending themsleves.  This group is a clique and seeks to exclude anyone who they deem not worthy of spreading their message.  It has the friendly appearence, but I have not found the inside of the book to support the cover.  Ok so this is the downside,I sugar coated, to support groups now to the up. 
             I belong to two other groups, one was started by a wonderful women who wanted a group unlike the other.  It is a small group and is mainly supported by those who were removed from the original group.  I have friends on this group and we post updates on our children as well as seek help with specific scoliosis related problems.  We can share ideas and whether everyone agrees with what you are doing or not,  your thoughts are supported. I have met Jane, Darrell, & Liz on this group and love them!  This group is quiet, but I know it will be there if and when I need something. They are the family of the support group community. 
          The third group I am a member of is the meat and potatoes of the support group community.  It is facts and published articles to support any issue your child may face whether infantile or juvenile scoliosis.  Post a problem and you will probably have research at your fingers to give you options and knowledge.  This group in contrast to the first doesn't advocate a center or technique.  There are people with success stories and those with roadblocks in this journey that post.  They show you all sides to the disease and treatment methods.  I definitely use this site and have found it's moderator to be a spitfire!  She isn't afraid to tell you her opinion, feels no need to play favorites and is a complete wealth of knowledge.  I like her spunk.
            The unsoung heroes of my support process would have to be my family.  Immediate family here with me, cousins from Kansas City, Chicago, Mt. Vernon, Tennesee, friends in North Carolina, Canada, Florida.  They listen, laugh, cry and pray with me.  They can't offer guidance but who needs it when you have unconditional love.  The cutest support comes from the second graders at Holy Rosary.  They are precious and caring, always kissing William and letting him know they are there.  They each made cards when we left for the first cast and I have kept them with us for each trip.  They give us support to read messages like "We Love you and hope it won't hurt".  Kids with differences are teased in life.  This scares me so much, but I know we have 40 kids that are going to make sure William's journey isn't filled with these same road blocks.  I am tearing up thinking about these kids and their families.  I wish you could see them with William.  It is the most touching thing to see his face light up when the girls swoon over him and the boys knock on his cast and call it armor!  They are the most uplifting of the support groups, not for the support they give me, but for the support they give my boys!
           The moral of this family in many ways was right, there are those out there that are in it less for support and more for there own praise.  Their self worth is somehow linked to how many people think they are wonderful.  There are also those just like me who have a child with a crazy condition who just need a supportive go ahead at times.  I am very thankful for these.  And then you sometimes look around and realize the support you needed was right in your own backyard.  For that I am the most thankful....heres to you my unlabled support group!  Without you the past 5 months would have been horrible. 

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