Autism is More than Just a Walk

Autism is More than Just a Walk

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Autism numbers are on the rise - one in 110 kids and one in 70 boys is autistic. 

One of those kids is 9-year-old Micah.

I first wrote about Micah on a parenting blog while discussing the importance of getting kids involved in their communities early. 

Because autism receives so little funding in relation to its prevalence, there is a lot of fear and lack of education surrounding autism. I talked with Micah's mom, Rebecca, about what their day-to-day universe is really like.

Micah is caring and lovable. He loves music like his dad, can master a soundboard, and loves spending time with his family. He is sharp and inquisitive.

In public school, he is in a self-contained class with eight other students, who are, interestingly enough, all boys. He loves school but struggles with transitions and anxiety, which means there is a daily battle with kicking, crying, and hitting - sometimes his mom, and sometimes the school staff or his peers.

Micah has been diagnosed with Asperger's Syndrome, which means, although he adores being around other people, he can't read their social cues, which leads to more frustration and anxiety. 

Now that he's nine, they're entering the phase where social hierarchies kick in, and for the first time are facing bullying.

Dealing with six or seven meltdowns in a day is the norm.

Micah receives speech, occupational and physical therapy at school. He also goes to a separate occupational therapy session at Milestones for Kids' Success one morning before school as well. He spends half of that appointment in the gym doing activities like jumping, swinging, and deep pressure therapy. The rest of the time, he is in the therapy room where they focus on listening therapy, fine motor skills and desensitization to textures, like getting his hands dirty at the sand table.

3-4 days each week they have a respite worker, who assists with Micah's routine and helps his parents learn better tools for dealing with meltdowns and anxiety. She works with him to build his communication skills, learn how to interact and learn how act in public. 

They also now have added a Board certified Behavioral Analyst (BCBA) on their team, who comes to the house once each week to assist with behavioral plans, and ways to get him to learn transition without the aggression.

He sees a psychiatrist every two weeks for medication management.

They see a neurologist at Children's Memorial Hospital who has done testing to rule out seizures and abnormal brain activity.

He has enamel hypoplasia, which means he doesn't have the amount of enamel he should. This involves a lot of dental work (and expense), under anesthesia.

Kids on the autism spectrum tend to suffer from a host of other health problems, including gastrointestinal issues, food allergies, and severe respiratory problems. Micah and his family spend a good deal of time at the pediatrician, allergist, GI specialists... and the ER.

Have I mentioned that Micah's parents, Rebecca and Mike, both maintain full time jobs?

How about the fact that many services are not covered by insurance?

Because of the full load of appointments and Micah's anxiety in crowded settings, it's the little things like dinners out that get missed. Rebecca said they generally do their "date nights" in - If they want sushi, they make it.

Balance is hard to come by. Rebecca is a fierce tiger of a mama, and her efforts are often all-consuming. I've seen her diligently take care of her family. She often works six days a week. She books more work on the weekends and volunteers her photography services to charities. She never pauses.

And then when you see her, the first thing she'll do is fire off questions about how you're doing. 

I'm continually impressed what Rebecca does for her son. 

Chicago's Walk Now for Autism Speaks is coming up on Sunday, May 21st. For those who haven't participated, it's a wonderful event with that raises a ton of money for autism while also providing one heck of a fun day for families. 

On that day, Micah's friends and family will gather to walk to celebrate him and raise money and awareness about autism. Will you join them?

For more information from parents in the trenches, visit ChicagoNow blogs Daily Downers and Fighting Autism and Winning.

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