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10 Things to Remember When you Have a Child on the “Autism Spectrum”

LeslieC_BlogBy Leslie Carto

It’s been about a year since doctors officially diagnosed my 4-year old son, Will, as being on the autism spectrum. I prefer saying it that way, ‘on the autism spectrum’ as opposed to ‘diagnosed him as autistic’. It’s one of those things that helps keep me sane. See, if you are simply, ‘on the spectrum’… there might be a chance to hop off. Like the carousel at the zoo. But being autistic… well, that means you’re stuck riding all day. This past year, I’ve been posting my life’s… shall we say, experiences. I know Will has made progress, and I’m hoping that I have, as well. So, in the spirit of decent writers who pen mediocre lists, I offer up what I’ve learned.

1. Don’t sugar coat that sh*%. Share.
I’m a people pleaser. The girl who sat front row, center raising her hand to assure the professor he was fascinating. I brush my teeth before the dentist, make my bed before the cleaning lady. I want everyone to be comfortable… happy… laughing. And as you can imagine, it really takes the air out of someone’s ‘happy balloon’ when you tell them your kid has a developmental disability. The sad looks. The carefully worded questions. So I have a story: a ‘Pollyanna-esque-Oh-Autism-Isn’t-The-Worst!’ Story. A few weeks ago I met a new mom at Will’s school. She asked if this was our first year at the preschool. And then I had to explain that we spent the third year of Will’s life shuttling him back and forth to speech, physical and occupational therapy… with a sprinkling of Early Special Ed for good measure. I explained about his diagnosis. And lied. I told her I had seen it coming and it really wasn’t much of a surprise when the pediatric psychologist and pediatrician agreed he was on the autism spectrum. I left out the part about stopping at my church before the appointment. About me searching out Fr. David and sobbing as he prayed with me to God for Will’s protection. I failed to mention the sinking feeling. The deafness after I heard the doctors conclusion. And that’s why I write. It shares the feelings… while protecting my heart. It keeps my closest friends and supporters aware of the struggles… and the times I need a lift.

2. Take stock.
Compared to a large chunk of the globe, we live like royalty. That makes me Princess Leslie. Reminding myself that my child is alive for me to hold, kiss and love helps. I know there are children battling ferocious diseases. Kids who won’t make it to their next birthday. Parents who aren’t capable of caring. Poverty that makes thriving impossible. Fighting that breeds hate. I have more than so many others. I have the most loving (and world’s cutest) cuddlebug.

3. Push yourself physically. Do it for your kid.
My initial intentions were shallow. I started a new strength training class when Will was just an infant in an attempt to get firm. Then one day I looked around, and found a room full of moms who were sweating and pushing and cheering for one another. Without even knowing it… those ladies have gotten me through dark days. Their energy is my fuel. And Will is my nitrogen (isn’t that what makes cars go faster?). When I don’t think I can do one more pushup… when I’m sure that next squat will kill me… I think of Will. Everyday he fights to navigate this strange world. Pushing myself reminds me of his hard work. And makes me appreciate my little man even more.

4. Expand your circle o’ friends.
Some of the best perspective about parenting has come from women who are already grandmothers. They often have time to offer a hand. Or a juice box to a cranky kid. I also found great comfort from the moms and dads in the waiting room of Will’s ‘special’ preschool. There was no need to explain. They were living my reality. And there’s something special about that.

5. Don’t give a damn… as long as you know in your gut that you’re doing all you can for your kid.
On a beautiful fall day…my kids and I were at the park. My two-year-old precocious red-headed daughter was on the ‘big girl’ swing. And 4-year old Will was wedged in the ‘baby swing’. And they were both happy. And so while a brief wave of depression washed over me…it stopped. Because they were having a blast. And I know that every other second of the week…Will is working hard. So if you know you’ve got all your ducks in a row, hop on the swing next to the kids and have fun.

6. Look at other kids when they include your child. Ignore them when they don’t.
There will be wonderful, kind, fun kids who either don’t know or don’t care that your child is different. Love them. And then there will be the eye rollers. The snotty twisted-faced little fools who look at your kid like he has a third ear. Simply ignore them. Easier said than done, yes. But here’s how I think of it: I have met thousands of people in my life. Some like me. Others don’t. Most I don’t remember. I have a handful of loving, funny and smart friends. A handful. Like, five. I don’t need more. And your kid doesn’t either.

7. Thank your child for working so hard.
A kiss. An acknowledgment. I means the world when it comes from my husband for running an extra errand for him. And it will mean something to your little one who you’re asking to struggle to find new ways of thinking… communicate and socialize. Plus, you get a kiss.

8. Thank your child for the perspective he’s brought to your life.
I call them ’emotional sit-ups’ that are giving me enviable ‘psychological abs’. The moments that define your life with your child. Your child is special. And your moments will be too. You will gain more wisdom, empathy and perspective than you ever thought possible. (And who doesn’t like being the smartest girl in the room?)

9. Know that God is with you and your child. Always.
This is a hard one of which to convince. It’s about faith. I believe, I know, that God is watching Will. And loves him. And this gets me through those moments when I’m mourning who my son might have been had autism not stepped all over our lives.

10. Finally, remember you really know nothing. But you can read about it when the kids go to bed.

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