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5 Things to Know About Autism: From a Mom of an Autistic Child

Are you an au-some mom or part of an au-some family? “Au-some” means you are connected to someone awesome with autism. I’m an au-some mom to the sweetest little boy. Although he has special needs, he is actually my easiest, least demanding child! He’s had medical interventions from the get-go, and from an early age, I just knew his path would be different.

He was officially diagnosed last year at age three. While I knew what the outcome would be going into the formal evaluation process, it totally sucked and it’s still hard to revisit or read his assessments. If that’s a path you are on, fair warning that it’s a whole lot of “can’t, won’t or unable” over and over, so hang in there. Identifying all those discrepancies is important to get the most time in the services needed, but it’s hard to hear. I don’t even read them anymore. Evaluation terms are for professionals, not moms.

I had a pretty good picture of what our future likely held, but I wasn’t prepared for the emotional hot mess that came with this territory.

More concerning than anything was the whole “starting preschool” thing. Sending a special needs child to the care of others takes so much trust. He likely won’t come home and tell me all about his day, because he is nonverbal. He’s at greater risk for mistreatment, neglect, abuse, becoming a target for other kids, etc. That all terrifies me.

To say I’m just extra protective is a drastic understatement. I’ve actually uttered the words “I will end you,” to someone who got impatient waiting for him to sit down at a table because he was intrigued by a slowly spinning ceiling fan. Obviously, I’d never do such thing, but I was not prepared for this level of extreme mama-bear rage to consume me. My natural instinct is to tuck him back under my wing and write off anyone who even looks at him unkindly. I’m working on this, but it’s tough.

autism

The most important thing I can do is advocate for him. The second most important thing I can do is be an example of acceptance and teach others how to step into our au-some world. There are a million and one things any parent of an autistic child could tell you. Here are just a few I would want you to know.

5 Things I Want You to Know About Autism

1. It’s OK to Ask

Questions are good! I would much rather you ask than assume. For example, my son wears ear protection headphones because it tones down the sounds of the world around him and he likes the pressure. We get asked about why he wears them while out and about all the time. Check out Temple Grandin‘s hug box for more information on deep touch pressure and sensory processing disorder. If you’re an anxiety riddled mom like me, you won’t be sorry, as many of these techniques can work for anyone! Tight hugs from my hubby and heavy blankets are my favorite!

2. One of a Kind

The saying goes, “If you’ve met one child with autism, then you have met one child with autism.” Autism is a spectrum disorder, and no two children are alike. While research has linked similar traits the majority shares, they still vary in so many ways. If you are connected to a specific person with autism, take the time to get to know them. Remember to be patient as they let you into their world. When you get that first intentional eye contact with a smile or laugh, it’s Disney World-level fireworks in your heart.

3. This Mom Doesn’t Know All

I’m not an encyclopedia on autism. Case studies and research are not at my fingertips. And it’s not because I don’t think it’s important, it’s just my son is more important to me. I’m the encyclopedia on him, not your neighbor’s autistic grandson. Also, don’t take it the wrong way if a mom (like me) doesn’t want to know it all. Part of that is our coping mechanism, as this stuff is really overwhelming. Reading case study after case study will not change the fact that our children are autistic, and many of us (me, again) couldn’t care less about why.

Our focus is preparing them to thrive in a world that won’t likely adapt to them. They will be the ones that will spend their entire lives adapting. Therefore, I’d like to learn about techniques to lighten that load for them. It’s a ‘sorry I’m not sorry’ kind of thing. No pity needed either. Just support and wine, please!

4. Be Verbal to the Non-verbal

Many kids with autism are non-verbal. Some don’t even show any acknowledgement or reaction when you speak to them. Please, still speak to them! Language is learned through language. Did you know most non-verbal autistic children are completely comprehending and know exactly what they would say if they could? They just simply can’t verbalize the words…yet! There’s so much they want to tell you. Can you imagine how frustrating it would be to not have the ability? Also, there’s a very good chance that they will not be non-verbal their whole lives. So, mind what you say, too!

5. The Exhaustion

Parenting a special needs child can be utterly exhausting. Behaviors in autistic children can range from mildly mannered to insomnia, utterly destructive, and even violent. They can wander, and some cannot ever be without assistance. The challenges tackled by parents of special needs children on a daily basis are more than the average person can handle. They have a child with extra needs, and with that comes extra intervention, extra appointments, extra supervision and safety equipment…just extra everything. So be extra compassionate and be extra kind.

Special needs children grow into special needs adults. Their journeys will likely be quite different than the average child’s, but their mamas would love to still have a mom-tribe, even though your children may not connect through school or sports in the same ways.

Some other ways to take part in this growing autism community is supporting local businesses who hire people with autism. You can also show your support for programs that provide resources to families for all the things these au-some people need to succeed. Like with all children, it really does take a village.

Local Resources:

Autism Society of Iowa
Iowa City Autism Community
UI Center for Disabilities and Development 

National Resources:

Autism Speaks
Autism Parenting Magazine


 

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