Gina St. Aubin is a wife and mother of 3, one diagnosed with Cerebral Palsy, PDD-NOS/Autism, Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia), Sensory Processing Disorder and Developmental Delays. A former Victim's Advocate turned advocate for those with intellectual and physical challenges, Gina believes being a 'Special Parent' means to Discover, Embrace, Educate, Advocate, Encourage, Treasure and Laugh. Read more on her blog, Special Happens, or Special Needs Parents articles on the Examiner.com. Am I really hearing these words come from my mouth, I thought. I know what I’m doing. I’m enlightening, advocating, putting the beauty of my son in the light to shine to one who has voluntarily shaded, turned a back to a (then) tiny family member.
Yes a family member.
She is a close family member, once considered part of the nuclear family. The entirety of that nucleus has done the same thing, but this is much more hurtful. She is the single one out of “them” that should care, should be involved, should be invested and loving towards her...line. But she’s not.
She’s distant, lacking knowledge and apparent concern of any part of our struggle, our fight, battles or war. She knows not of our life. Her interactions forced. Her words stinging in the ignorance of their hurtfulness. Words strung together haphazardly, like:
“You shouldn’t let J direct what you guys do. Your life.”
“You guys do too much for him.”
“You should just stop and forget it. He is what he is.”
“B’s kinda got a ‘Rain Man’ thing going.”
For almost 8 years, any attempts we’ve taken to educate her, include her, seek comfort and support have been met with shortness, disinterest, the lax of non-investment. Many times, she has questioned our observations, specialists’ diagnosis, the possibilities that a boy already stricken with challenges should receive even more. Challenges rare. Challenges growing in their instances. Allergies. Metals. She disbelieves, showing little or no faith in our circle of care, in us, in our honesty; she disregards our desire to help our son live the best life possible, to help him become a formidable opponent to his challenges. She disregards our ability and our souls’ burning desire for our son’s health and happiness, as any good parent would.
Disappointment is a word too little. Betrayal possibly more accurate.
And here I am. Words beaming from a mouth curious of my purpose. Why would I bother? Why would I explain, attempt to unveil her to see the light that shines within him? We’ve tried before. There’s no connection here. Yet still, I fumble as I see her gaze off to another place.
Then I stop. I can try no more.
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Comments (6)
My great nephew has a form of autism. While I do not always understand all of the implications of it, he is a wonderful little boy. He is a highly functioning child but you might think he has behavioral issues and not always understand that they are coming from the autism. I feel bad for my niece because she gets rude stares and remarks when someone does not understand that this is not a bad child or bad parenting. I hope he will find the right teacher when the time comes. I think a great school and a good support system will make a world of difference to any child who has special needs.
What a truthful post. You are right! When people disregard your child, there's little you can do to sell their worthiness and beauty. Because of it, this people must have a diminished role in that child's life because they will belittle any accomplishment -- or disregard. Thanks for sharing and you have a beautiful blog.
funny how a parent..is human too..
You can only educate those wanting to be taught. If she chooses ignorance, I don't feel sorry for her - but to all that feel the affect of the il-educated comments. No two children -typical or not- are the same and each require an different amount of one on one. My brother needed much more help than I ever did, but that makes him no different than me. He is what he is - but that doesnt mean you should stop and forget educating and improving the quality of not only his but your life! Some people just dont understand that when you give up someone else - sometimes you give up on yourself too.
I hope what I have said came off alright, I have a hard time putting my thoughts into words. But I have a good feeling most of the people reading this can relate to that.
I too have had a close family member let me down. That's what it is...a let down.
judging looks, sideways glances, biting comments disguised as jokes...and then, during a time when he was so extremely frustrated...in a
store...she grabbed his arm...so hard she left her hand print...that did
it for me.
"you're a bad parent"
"the rest of us shouldn't have to make accommodations for him"
"our girls don't like to be around your family"
"he's just badly behaved"
"what are you doing to help him"
"why don't you have him on a gluten free diet"
questions, statements and accusations all contradicting themselves.
Eventually she apologized, but without being willing to educate herself, there is nowhere to go. No relationship to have. I lost my sister. But I will always put my child first.
That is sooo sad. MESSED UP FAMILY MEMBER!!!