I'm having one of those days. Anyone who is the mommy (or daddy) of a child with autism will tell you, we have "those" days. Days when we feel our personal hopes and dreams for our children, who have special needs, are shadowed by an unfair reality. Days when you just run out of steam. When you just don't want to hear another Spongebob episode spoken verbatim, even though you know his communication skills are still forthcoming, and that is his BEST way of communicating. When you want your child to be able to answer "what", "where", "when" questions without the need of a prompt. Days when you just wish you understood more. Had more to give. Didn't have to throw angry looks at others who don't get it! I've thrown a lot of angry looks in the last few years. Those mumbles under my breath are hardly ever kind. But who or what am I angry at? At Autism!! At the condition which makes my child just a little different.
But... then I sit down and cry, not defeated, but worn out. I let loose the anger, frustration, and selfish desires of my own heart. I hear my Lord whisper in my ear that He's right here! That just because the world doesn't understand my son, it makes him no less valuable and able to accomplish great things for His Kingdom!! Then I look at my sweet boy, who is playing one of his computer games, and I know... I just know Jesus will make all things perfect in His time. Not my ways, but His. All I have to do is just love my boy--- and that part is EASY!!
In her book, TEN THINGS EVERY CHILD WHO HAS AUTISM WISHES YOU KNEW, Ellen Notbohm writes about the world from the perspective of the autistic.
Here is her condensed list: *(I'M PRINTING THIS OUT AND STICKING IT UP ON MY REFRIGERATOR!)
Ten Things Every Child with Autism Wishes You Knew
I am a child first
My autism is one aspect of my total character. I am a person with thoughts, feelings, and many talents - like you. Don't allow stereotypical thinking to limit your expectations of what I may be capable of.
My sensory perceptions are disordered
The ordinary sights, sounds, smells, tastes, and touches of everyday life that you may not even notice can be downright painful for me. I am not withdrawn or belligerent; I am just trying to defend myself.
Distinguish between won't and can't
It isn't that I don't listen, it's that I can't understand you. When you call to me from across the room, I hear: "*&^#@, Billy. #$%$&*" Come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." Now I know what you want me to do and what happens next.
I am a concrete thinker. I interpret language literally.
Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is, "This will be easy for you to do." Idioms, puns, nuances and sarcasm are lost on me.
Be patient with my limited vocabulary
It's hard for me to tell you what I need when I don't know the words to describe my feelings. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.
Because language is so difficult for me, I am very visually oriented
Show, rather than tell me how to do something. Patient repetition helps me learn. A visual schedule relieves me of the stress of having to remember what comes next--and helps me meet your expectations.
Focus and build on what I can do rather than what I can't do
I'm constantly made to feel that I'm not good enough. Trying anything new when I am almost sure to be met with criticism becomes something to be avoided. Look for my strengths and you'll find them.
Help me with social interactions
It may look like I don't want to play with the other kids on the playground, but I don't know how to start a conversation or enter a play situation. Encourage other children to invite me to join them at kickball or hoops.
Identify what triggers my meltdowns
Meltdowns and blow-ups are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. Figure out why my meltdowns occur and they can be prevented.
Love me unconditionally
Banish thoughts like, "If he would just..." Remember that I did not choose to have autism, and that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you-I'm worth it.
Â© 2005, 2010 Ellen Notbohm www.ellennotbohm.com