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    Posted May 7, 2011 by
    hkrpjr2599
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    Grand Rapids, Michigan
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    Autism's Generation War

     

     

                  Why do some people take it upon themselves to make life harder for others?  Just when you think you have finally scaled the most recent hurdle, they slip in quietly and grease your final step with their particular kind of selfishness.  WHAM!  Back down you go, landing flat on your face.   I encountered such a person this week who had taken it upon themselves to inform their daughter’s in-laws that their shared grandson wasn’t really Autistic as her daughter claimed, and that they had to do something before this mis-diagnosis ruined their grandson. Why can’t people think before they “grandparent”?  I was so angry, knowing both the child’s behavioral history as well as the mother.  The only way someone could fail to see this child had developmental irregularities was if they were in denial.  Hmm, denial.  Turns out it’s more than a river in Egypt.....
            Grandparents who cannot accept or do not understand a diagnosis of Autism can inflict the most hurtful and exhausting kind of persecution parents of Autistic children struggle with: “You caused this to your own child somehow, either by accident or intentionally, or you are exaggerating because you can’t handle parenthood”.  But did you know that 1 out of every 110 children in the US is diagnosed with Autism? (www.cdc.gov, Dec. 2009) The CDC also states that, “Research shows that early intervention services can greatly improve a child’s development. In order to make sure your child reaches his or her full potential, it is very important to get help for an ASD as soon as possible.”(
    www.cdc.gov, May 2011) We are acting to save our kids. If our kids improve, it’s because they have been given the needed attention, they have not “outgrown” Autism.

      

      

    Understand I am not saying that all grandparents are like this. There are many grandparents and family members who are nothing but loving and supportive of their loved ones who are affected by Autism.  But more and more people share with me every day horror stories about how difficult their own parents/older family members made it for them when they received the diagnosis of Autism for their child. I call it Grandparent Sabotage.
            So, what is behind this trend? Why, history of course!  Many Grandparents of today grew up in a time when children with developmental or emotional problems were sent away to asylums or kept out of the public eye.  It is also this same generation whose own parents of Autistic children were told that Autism was caused by “refrigerator mothers” who failed to show love and affection to their child at an unknown crucial point in development.  I believe these two elements, combined with two important generational attitudes, have lead to this recent trend of Grandparent Sabotage.     
            The first attitude is intrinsic to being a “Baby-Boomer”. The Baby-Boomer generation has helped redefine defiance as something that makes one stronger, especially when there has traditionally been blind acceptance.  And this isn’t always a bad thing, especially in light of asylums and “refrigerator mothers” which haunt our past.  However, this defiance can swing to the other extreme, where nothing is true that isn’t witnessed, confirmed, or determined by first person knowledge and/or experience. Thus Baby-boomers seem to automatically look at something new or hard to define with a skeptic’s eye. Autism, for them, is severe or it’s “not” at all. These types of grandparents have told me, “All these young parents must be doing something wrong; they’re not disciplining their children enough.” And, “Maybe they have corrupted their children’s brains with television. You know parents don’t know how to be parents anymore. Why, in our day….” Sound familiar? This type of defiance is not helpful, Grandparents. In fact, it’s defiance on a bad trip: aka denial. 

            I believe this defiance/denial to be the crux of many Grandparents’ inability to accept their grandchild’s diagnosis. Needing to know the reason why before offering their trust and support, as if they need to make sure they aren’t engaging in an emotional pyramid scheme, seems to be paramount.  For this group I recommend that the parents of the Autistic child invite Grandparents along to doctor’s appointments, psychological evaluations, IEP and school evaluations, and events with other Autistic children and families.  Knowledge is power with this group of skeptics.  And once they begin to engage in these things, they are well on their way to building stonger families.

            The second generational factor is probably more common, but much harder to combat: Emotional/Spiritual constipation.  This group of individuals chronically doubts anything which threatens their control over life and others.  They are spiritually defiant, emotional snobs who look down on those who admit physical pain, who seek help for problems, and who admit there is a permanent state of chaos they cannot control but only combat with love, honesty of their grief, and the support of something greater than themselves.  This group infiltrates every generation; however Boomers are uniquely hurtful if they approach their grandchild’s diagnosis in this way because they laid much of the road to modern parenting. They assume the rights of the rules and have not given their children permission to change them.                

         This is the group which I have combated in my own family, in one of my parents.  This parent was so mean and went to extraneous lengths to hide my son’s autism from others in the family.  This parent even took it upon themselves to call my husband frequently and try and convince him I was making the whole thing up for attention. “Let him be his own person, walk to the beat of a different drummer!” they informed me.

              Yet it was also this parent who was unwilling to travel to see us, had few pictures posted of our son in their home and who conveniently had to work every time we asked for them to come with us to doctors, school appointments, etc.  It took almost 6 years before this person was able to finally open up as Grandparent to our son, embrace him for who he is, and love him as he is.   I must admit that there was no amount of pushing which helped change this person.  Confronting them only left me more hurt and angry.  Asking them to change only made them regress.  I had to let this person grieve in their own way, learn at their own pace and fall in love with my son a little at a time. But time is something we parents of Autistic Children can’t afford to waste. We can’t wait for your approval, we can’t wait for you acceptance. If you want in, you enter under our terms.  

              To you loving, caring grandmothers and grandfathers who have surrounded their children and grandchildren with nothing but love and support: thank you. Thank you for being rebels with a cause.

              But you trouble makers are still out there; Bra burners and draft dodgers, ready to dig their tie-dye and bell bottoms out of the attic to stand up against “The Man” who is corrupting your children and grandchildren with false labels. For you in this group, I have a message for you that may blow your mind: your conscientious objector status has been denied, and your credibility gap is widening. Get with the times, man, before you tarnish your Karma. Mellow out, and, “Come together right now, over (us).”

    For more information on Autism, go to:
    www.cdc.gov/ncbdd/autism


            Do you have a similar story? Are you a Grandparent struggling with your grandchild’s diagnosis? Have you felt family support is lacking in your struggle against Autism?   I’d love to hear your story!  Write me in the comment section!  Let’s begin a dialogue.

     

     

     

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