I’ve been mulling over some things, since I wrote my last blog “https://muthalovinautism.wordpress.com/2013/09/05/desperate-to-be-heard/” . The first thing was my reaction. Was it the right one? The second was readers’ reactions. Did they go too far with their replies or did they just take me wrong? I still hold to every thought I wrote that night. In hindsight, I might would’ve tried to not make it sound so accusatory. I don’t “blame” anyone for the life I live as a woman with Aspergers and a mother to children with autism. I LIKE my life. I LOVE who we are. I was, however, very upset….not just for a particular family, but for my family and every family that is not getting the help we are told would be there. The week before I wrote that post, I got the rejection letter in the mail from the government. The one that gave me a list of guidelines that my children met to receive services, and they still denied us. Months and months of jumping through hoops…only to have to appeal and do it all over again….to have invaluable services delayed even longer. I know the despair I felt. I can only imagine the despair of others who have been living this life longer than I have, with children who’s “symptoms” are more severe than my own.
There was a comment made to me. One I can’t shake. “Your life as a parent to autistic children isn’t as hard as you assert it is. Stop having a pity party and have a “change it” party.” What an easy thing for someone not living our life to say. I know TONS of autism families from online and several in person. I’ve never heard one throw a pity party. Never. I’ve heard them cry and fall apart, when it was justified. I’ve seen them bring their problem to the table we all sit at and ask for help. I’ve seen strangers hold each other up and offer the words and love that was needed when family and friends turned a blind eye. But I’ve never seen them throw an honest-to-God pity party. I am honored to know some of the strongest people on the face of this earth. People that don’t just tackle their own challenges, but care enough to help others tackle theirs. I’ve seen threads 250 comments long of strangers helping one another find solutions to eating disorders, mood disorders, meltdowns, hygiene problems, learning issues, self mutilation…the list is endless. It is one great big CHANGE IT PARTY all day long.
While I might, occasionally, witness someone in our community stating “I’ve got it so much worse than you.”, that’s the exception…NOT the rule. In the blog I last wrote, I wasn’t trying to tell the world how much worse off than them we are. YOU, dear reader, turned it into that. You chose to see whining, instead of a need. We live a life in which many of our children don’t EVER speak to us….to anyone. We watch them bang their heads against walls. We watch them stay awake for days, sometimes weeks, at a time. We watch them stare into space and not hear us when we try everything to bring them out of the autism induced trance they are in. We see them step off the bus with hand prints on their faces and shoe prints on their chests, because some kid thinks they are weird and not worth knowing. We beg them to eat just one bite of food, because it’s been days without them getting nutrition. We tell sixteen year olds how to wash themselves for the 9,000th time, because we know if we don’t tell them, they’ll stand in the shower and never bathe. We see them do amazing and intelligent things at home, yet get looked over at school by SOME educators because they aren’t “worth the time”.
If you, most offended reader, deal with those things and so much more, forgive me. I didn’t know it was so common. I was under the impression that we need to educate about what’s really happening in our homes, because people look at us like we’re crazy in public. My bad. I thought that as parents of special needs kids, we were supposed to help the world understand our kids, because someday, we won’t be around to help them anymore. I didn’t know that you worried about whether your child would ever be able to leave home or not. I didn’t know you were scared that they would never be able to work, have a spouse, drive a car, or simply graduate. I just had no idea those fears were what kept you awake too.
You think we want your PITY? If that’s how you see us, then you’re CHOOSING to see it like that. We want your understanding. We just want you to listen. There are 1 in 50 children and adults living this life. We don’t have the luxury of just being around people like us. WE have to live with YOU…and your children. All we want is for you to see us for what we really are and have compassion when things are hard.