Wow guys it’s been awhile! This morning as I sat pondering where to go from this last week I must confess, I wasn’t sure. I read something that shook my heart to the core….and to boot my mothers heart at that!
But first as I contemplated all the things that I now find myself wrestling with, God painted a beatiful picture!
So last week and into this week I felt like I lived in Mark Shultz’s song “Running Just to Catch Myself” Except for there was no running, more like hobbling……on crutches! I was feeling pretty bummed about not being able to do anything and being in bed for two days and out of commission for four! I have a great hubby, and he was such an encouragement and a trooper for helping out so much and the house was in better shape (not that it was all that bad to begin with).
But in the process of all of this, we were preparing for a workshop on churches reaching out to the growing population of children with developmental disabilities. But as I read and read and read, I stumbled upon a blog post that struck interest, unfortunately due to some of the content, I really feel as though I can’t share it. What the blogger shared was pretty good, but it was the commenters, that were, oh, I’m not sure of the right words to use!
There were countless explicatives used, specifically in reference to autistic people. Two commenters in general have haunted me, from Monday morning to this very moment! The first one generalized with” Autism is just an excuse for poor behavior”. (I removed the explicatives for the G nature of my blog)
The second commenter said something to the effect of “What no mom bloggers complaing how hard their life is .”
Ohhhh I have taken the last week to examine my heart, for two things,
1. Am I making excuses for my child because he is autistic? am I excusing his “bad” behavior?
2. As a mom blogger am I using my social platform to complain?
These are hard questions to answer, and in a way gave me a form of writer’s block. They also made me feel unworthy of writing on the subject….I ‘m not sure why but it did! Have no fear though I have collected my thoughts and I am back!
First off let’s address that “excusing poor behavior” commenter. We as parents refuse to let our child use his disability as an excuse to act a certain way. He knows he is different, and sometimes tries BUT, we are right there reminding him, that his autism is not a valid excuse, that being said, there are certain things that he along with other autistic children/adults can not help.
Just to name a few are: jumping, spinning, and rocking, also known as stimming; and then tics. Tics, like that of aperson with Tourettes can be repetitive movements, or sounds ranging from soft, to extremely loud. They happen for various reasons and to some are not recognizable as tics unless you know what you are looking for. Our son for example, does hand flapping, but has also in the past screamed in short repetitive screams, clucked like a chicken, made a clicking noise with this tongue, a noise almost like kissing ( but not quite), repetitive sniffing, a very gutteral noise in his throat, and blowing out through his nose. The tricky thing is, you can correct these, but they don’t even realize they are doing them. That’s where tolerance and understanding comes in. They aren’t harming anybody. You might be made to feel uncomfortable but so are they….1) because they are in a setting that makes them uncomfortable 2) you are staring at them! 3) some people are commenting! An autistic person is not stupid, matter of fact they tend to understand more non-verbal reactions. (Except facial expressions….more on that later!)
We cannot correct our children in conventional ways…..if anything it makes them worse. We have to 1) be very creative in finding out what works 2) we have to be taught! I am a firm believer in the fact that parents need to be students of their children to begin with! I also believe that discipline will looks different for each child! We see it time and again. The autistic child will respond to firm, but kind discipline, rather that too harsh…OR too sweet! Take into account that most of the States in the U.S. Provide no help for parents of autistic kids. They are given a diagnosis and sent out the door with a hearty “Good Luck” and the parents are left to learn everything they can to help their kids survive in the world suited for normal people! (Let’s remember that normal is a setting on a dryer). Our little guy just started recieving services….PT, OT and Speech. But we have yet to go through our 8 hour evauluation, which when that is complete will allow for respite care, help with insurance (because we’re talking 60,000 dollars a year average on medical expenses for that person alone) and even more classes like being taught how to read facial expressions (so “the look” actually works instead of them thinking you are making silly faces at them!) Until that point we are making due. That being said, cut us some slack, we are on a HUGE learning curve! We aren’t experts!
Even though our child does not understand social norms, most parents of autistic kids kill themselves trying to teach them that it’s not ok t lick people or things, talk loudly, be too rough, get upset and throw fits when things don’t go as planned and so much more. It takes so much longer to work through the simplest of things, so when your condescending glance or comment in the grocery store, at the park or at church is made, we feel as though our child needs a defense, afterall they are struggling, they do have reasons, but the average adult should know how to guard their speech and behavior! And yet they still say inconsiderate things!
So onto commenter 2……am I really using my social platform to complain? This journey we find ourselves on is not an easy one. A lot of people would be shocked to learn what a day in the life of Mary looks like. The little bits I share, are for three reasons 1) to help others who are struggling, not feel so alone 2) to help others understand where we are at (otherwise known as transparency) 3) i need an outlet, and it helps me work through the tough spots! Here’s the thing, my blog is a safe place, where I try my hardest to build others up. Too many people slam others, and hurt! That is not my goal, nor will I aoplogize for sharing my story that could possibly help someone else!
I have tried my best not to complain about the things we are dealing with. Yes they are extremely hard! Yes they will tend to drive me crazy….if I let them. Yes somedays I want to run away with a circus because it would be less insane! BUT in all of this I would not trade my little boy for the world! My hope does not rest in a cure for autism, my hope does not rest in quiet hours. My hope rests on the One who promises to Never leave me nor forsake me, the one who said All things work together for good who love the Lord, and I will Do ALL to the Glory of God, and that means raising all my children, to not be good citizens but to raise Christ-followers. My hope is in God alone! I am so grateful to even have Weasel! We have already seen it, God is using him in big ways. I am blessed!
