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Strange adventures

 

One mom shares her advice on living the never-dull life as a parent with an autistic child

By Rachel Lavallee

Have you ever wondered what life with a kid on the autism spectrum might be like? Are you a fellow parent with a kid on the autism spectrum?

When you get your initial diagnosis from the psychiatrist who is looking at you with softly furrowed eyes and says, almost in a whisper, “According to our assessments, yes, your son has Autism Spectrum Disorder,” you may cry. Get mad. Settle comfortably into denial. But my first thought was, “Well duh. We needed an assessment for that?”

What the world, and the softly furrowed psychiatrists, don’t tell you is that autism is weird. Your kid will do things that are weird, they will prefer weird things and life with autism just is weird. It’s hilarious, joyful, frustrating, but most of all weird.

I keep having this nagging thought that there should be some sort of pamphlet that explains the weird to parents and strangers alike. It would save a fair amount of awkwardness.

The initial one for parents could prepare us for the “real” things that happen, such as a young baby, your kid may not enjoy you babbling to them. They could just simply stare at your mouth. You later realize it’s likely because your teeth are dancing to them, but at the time, you’re simply confused. You’re thinking, “This baby-raising-advice book tells me they should be enjoying this?” The pamphlet could better explain these things. It could also explain why your baby only wants to stare at things, not people, and could not care less about the overpriced rubber giraffe, but instead really digs the rug near the front door.

The parent pamphlet could also explain how your child may not talk for a very long time, and that no amount of pushy overenthusiastic therapists will change that if your child is not ready. The same goes with potty training. You may have an eight-year-old in diapers. Your eight-year-old in diapers can reprogram his iPad, but not realize a wet diaper is uncomfortable. This is the selective weird many parents may be unprepared for. Same with discovering orange cheese is only acceptable in processed slice form, that a slice off a block is unacceptable and simply wrong, actually. Are you embracing the level of weird yet?

It gets better. The pamphlet for parents (assuming they have finally embraced the weirdness life has presented them with) is actually quite straightforward. Your kid may line up cars, flap hands like an overeager seal or look at a stranger and make fart noises.

The pamphlet for strangers is where it really gets weird. This would be something parents could hand out.

When you disclose to strangers, often out of necessity, that your little one is on the spectrum, the stranger may launch an intense five-point investigation. These are the most frequently heard questions and statements, usually preceded by an apology of some sort, and a reassurance that they fully understand autism because their cousins’ girlfriends’ sisters’ kid “has it.”

The first question you often get is, “When did you find out?” OK, that’s an honest question, not too weird. A general age will usually satisfy inquiring minds.

Number two gets weirder: “What do you think caused it?” Maybe it was an alien encounter? Maybe it was that sushi you ate during your first trimester? Do people not read the news? There are brilliant scientific minds working on this. I know some of these people. They are much smarter than I am and quite neat, and if they don’t know, how the am I supposed to? Your answer to this one is on your own. Often, my answer is highly dependent on how unbelievable our encounter has been in the past 10 minutes. If you’ve denied my kid a free cookie at the bakery counter because he would not say please, even after I explained he is non-verbal, or you deny my kid a cart to sit in at a mall because you have nothing for “those kinds” of kids, you’re likely going to get a bit of a snippy answer.

Number three: People will want to know if you vaccinated your autistic child. Never mind that the original study that linked autism with vaccine usage has been debunked, and the scientist who completed the study was found to be a fraud and lost his medical license, this rumor is still prevalent. My answer is usually exactly that. I do like to do a bit of educating on this one. As a nurse, I feel a professional obligation to pass on that particular bit of info. They should make a pamphlet about that.

Number four: People will want to know what your child’s future might hold. “So, will he be OK?” This is getting to a pretty advanced level of weirdness. I do not have a crystal ball, therefore cannot predict whether he may end up a theoretical physicist or greeting folks at a retail giant. Usually, my mouth is simply hanging open at this point. I probably should simply respond with, “I think so?”

Number five: This is usually the last question you’re thrown before you’re allowed to leave. It’s some version of “Are you going to have more kids?” or “Does the other one have it too?” Some people legitimately ask this as if my reproductive game plan is up for general debate. This is ultimate weirdness. How awkward do you think this might be to answer, to say your mother in law, let alone a complete stranger? Please do not ask complete strangers about their reproductive game plans unless you are directly involved in the process.

This pamphlet will be extremely helpful in letting you off the hook when complete strangers want some education on autism, and you have ice cream melting in your shopping cart.

So, fellow autism parents, don’t fret. If you can embrace the weird fun that is life with autism, then you have all the faculties to embrace the weirdness of strangers with a cousins’ girlfriends’ sisters’ kid with autism.  Plus, you’ll have a pamphlet. 



 

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