Parents of kids with autism love to talk about their kids. Just ask us! Each of us has our own story to tell and this is mine. Ask another parent and you’re sure to get a different perspective.
When I tell people my child has autism, I often wonder what they envision. Do they conjure up an image of a child “locked up in his own mind” looking blankly out at the world?
Or perhaps they imagine a “little professor” who has can list in a very business-like tone and in alphabetical order, the 400,000 species of beetles known to man.
You should know that my child is not like Rain Man or Einstein.
Some children with autism may have savant abilities or have remarkable splinter skills but most do not have a special superpower. On the same note, not all children with autism have an intellectual disability. And having intellectual disability does not mean a child is not smart.
My son has limited verbal ability.
We’ve never had a back and forth conversation consisting of more than 3-5 words. But if you ask Arthur what day of the week was August 10, 1996 he can tell you Saturday…in a matter of seconds. He has cracked the calendar code. Leap year blew his mind!
I love my kid. I don’t want to fix or cure him.
I do, however, want to help bring out the best in him so you may hear me talk a lot about early intervention, therapies, special education, state benefits, and my concerns about his life-long care needs. I worry. I fret. I am human.
“If you’ve met one kid with autism, you’ve met one kid with autism.”
The spectrum is wide. On that very wide spectrum, you will find people with autism who go to college, get married, are gainfully employed – and you will also find people on that very same spectrum, who need to be kept in line-of-sight for safety concerns, can’t cross the street safely and will require life-long care for basic needs. And you will also find everything in between these two portraits of kids with autism.
Pride and ego left me long ago.
Go to a grocery store, doctor’s office or public event with my son when he’s having a tantrum and you would totally understand. It fails to faze parents after a few hundred trips – although the stares and unkind looks still sting.
A kind glance can make my day.
Autism diagnoses are not handed out easily.
It takes months to get in to see a specialist, and usually several appointments to get the autism diagnosis so if someone you know is on a waitlist, this can be a very difficult time. It’s hard to wait, especially when you hear early intervention is important.
As a parent of this amazing child, I have learned acceptance.
We parents live with fears of our children’s futures. We are immensely proud of every achievement our child masters. And we couldn’t care less if it’s developmentally appropriate.
Racing to the top is not important to me.
Our kids can – and will – make progress. And we will be there to cheer them on. We can only hope the rest of the world will too.
I realize autism is uncomfortable for people unfamiliar with it.
I notice when people don’t seem to understand or like the way my son is acting. It might seem annoying, weird, or unfriendly. As you begin to understand autism, the behaviors sometimes become clearer. It’s not done deliberately to be strange or rude. Perhaps if you see a person with autism at a playground, the mall, or out in the community you could simply say, “hello” or extend a smile toward the parent or caregiver.
Don’t take it personally.
Autism is a social-communication disorder and can be accompanied with behavioral challenges so it is not personal if my son doesn’t look at you, or acknowledge your presence, or if he kicks you in the shin. We learn to love and care despite what we “get back” from the relationship.
Redefine success.
Meet him where he is at and the rewards are endless. I appreciate my son because of (not in spite of) his differences. He has taught me more than I imagined I would know about grace, hope, patience and love.
Different is my normal.
For myself – and many fellow parents of a child with autism – this is A-OK. And our hope is that is for others as well.
Katrina! This is a wonderful article! Thank you for sharing about Arthur and your experience. I know each one of the individuals with ASD are unique and I enjoy working all in my art therapy sessions. I will summarize your article in Japanese and share with the parents in Japanese speaker’s support group!
What a beautiful article, Kat. Thank you!
Hi Trina. Thank you for sharing your heart in this article. You are such a loving, caring person. Arthur is lucky to have you and you are lucky to have him as well. I love you and think of you often.
Loved your article:) I have 3 boys, 2 which are on the austin spectrum. Your words are so encouraging:) Thank you for sharing. Do you know of a good safe online website for parents to chat, support each other, and simply share.
Thank you
It was nice to read your story… i can only dream that one day i will feel like that. i feel quite the opposite… i feel that my child IS locked in his own mind and he lives in a world i can never be part of – nor will he ever be part of mine – from his perspective and not meaning mine in the literal sense.
I feel that he will never love me in the “normal” sense of the word nor know the love i feel for him, he may never kiss me or tell me he loves me…. Or in fact speak at all…
I feel – not for me but for HIM – that he has been cheated, robbed of something… like a switch in his brain that was never flipped…. i feel that he is robbed of a normal life, of a normal future and all the good things life can offer….
I feel afraid that I may not always be able to protect him from nasty judgemental people, or from those that “compare” him to their “normal” child and smuggly go off smiling to themselves about how perfect their little world is!
I feel MY POOR BOY!! My heart breaks for him knowing we will one day die – especially not being young parents and then what happens to him? How can i keep him safe, and happy and loved all his life?
Ms. Thomas, thank you for sharing with such honesty. This is a very understandable profound mix of painful feelings. When my son was diagnosed with autism at age 2, I grieved for what I perceived as a loss of a “normal” life. Many parents feel this way. The diagnosis can be a significant curve ball in life. It’s not that we don’t love our children—that’s the reason we ache. We worry life will be hard for our child. Difference is not always welcomed with open arms in our society. My son is severely affected by the symptoms of autism. I believed the world wasn’t meant for my son and I worried he would suffer. I found comfort knowing that my son might not ever define or feel “normal” the way I do–and he might not experience the sense of loss and sadness about not living a “normal” life. He is his own person. I know he feels the love and care I provide. Like the rest of us, he will suffer so I made a conscious choice to take a leap of faith that others will seek to understand him and be kind. It’s scary. I wonder who will cut his toe nails when he is 52. For now, I have learned to love and care, despite what I get back. When I see a pack of typically developing teenagers my son’s age, I still ache for what I expected but over time the sting is less and my delight and tender feelings toward my son override what I wish he were. I really can not imagine him any other way. I love the kid for who he is not what I wished he could have been. When I look at my son, I see Arthur. Not autism. He’s just wonderful Arthur. This took time, adjustments, coping, and better understanding autism—and what it looked like for my child.
Please find comfort in knowing your feelings are normal, you are not alone, and this is difficult–because you love him so much.