Today's entry is a bit different. Perhaps me venting a touch and hoping you can relate with some of these daily struggles that are really frustrating. Get an idea of what it's like to LIVE with Autism, not just sit a couple of hours or minutes at a party or grocer.
Why is it that everyone wants to play down Autism? "Oh, it isn't that bad, right?" "He looks normal." After a dinner party, "He was great. See, I didn't even notice there was anything wrong with him." How often do you hear these lines? Everyone throwing in their two cents.
I do not understand the value of down playing someone's misfortunes, no matter what the situation is.
The things most people do not notice is the parents constant attention they are giving their child during that dinner or family get together. No one seems to notice how many times Aunt Sissy got up to tend to the children and how little of her food was actually eaten. Who sees the physical strain, the bags under their eyes?
The economical expense of having a child or even multiple children with Autism is rarely considered by most. The therapy and doctor's visits take a huge portion of income. Many parents lose hours of work to take their children around to various appointments or stay home because the child is often ill. My youngest, has PICA. He eats everything. Though, things are better, when he was younger he was always sick from eating nonfoods, continuously. Many families suffer financial grievances of great proportions and it never ends. More than likely, it will be for life. It is estimated that the cost of treatment starts at 1.4 million dollars to 2.4 million for a lifetime of treatment. In our home, we must continually repaint, re-wallpaper, patch holes, replace broken furniture and other fixtures as well. Well above the normal upkeep.
Try to imagine, the stress parents and siblings face on a day to day basis. Since the diagnosis of both of our children, we have all suffered mentally and therefor, physically. My husband, though a marathon runner, suffered two heart attacks. I have Acute Anxiety Disorder amongst other ailments that commonly occur due to stress. The impact is much greater than I ever would have thought.
So while families with Autistic kids are still doing the everyday grind, like everyone else, you have to add all of these other factors on top of it all.
There is often a great feeling of despair for families and parents of Autistic children. Especially knowing there is no cure and they don't grow out of it. Parents may feel guilty because of the situation their child is in. The future is so uncertain for most and that is also a great strain. Many parents refuse to go in public due to behaviour that might offend or they simply do not wish to see the judgemental glares that just add fuel to the fire.
So, do someone a favour by not minimising their situation, no matter the situation. This can also go for life in general. Everyone has their own crap going on. We can all be more compassionate.
Encourage through smiling, hugging and reminding people that they are doing a great job. Let them know that you can't imagine how difficult it must be, but that you are there to help if they need it.
Real enlightenment comes when we truly walk in someone's shoes. When we put our perspectives aside and make the effort to see things how someone else does. This should lead us to more compassion, understanding and less judgment.
These ramblings are never meant as some kind of boo hoo pity party. They are tips and tools to help others understand how it really is living with Autism and suggestions on how to interact when in a situation involving Autistic children or parents and family thereof.
Perhaps you'll want to share this blog with someone who just doesn't get it.
If you've got something positive you'd like to add, leave a comment or join us in friendly chatter in our Facebook Group.
Best of luck and we'll see ya next week.