Ask a Question. No seriously. ASK

autismthatdbegreat

Sometimes I get asked really insightful, thoughtful questions about my children with Autism. Usually, they come from people who are already “in the know” and are seeking out some sort of networking strategy. The other 99% of the time, I deal with assumptions or people just keep their distance because it’s just too hard. I feel the same way about math. However, asking questions is how I figured out how to navigate through so much of this. So, in the name of awareness (since this is Autism Awareness Month), instead of buying a light bulb, I’m going to actually create awareness. I’m not a professional, but I do play one at home. These are just opinions based on my experiences. Your experience or opinions might differ greatly, so let me know about it!

What is Autism to you?

In my personal experience, Autism is what everyone refers to it as: a spectrum disorder. For many, who think, “what the heck is a spectrum disorder?”, I offer the following. For me, Autism is a developmental disorder that can present in many different ways. It’s a cognitive difference that shines through with a different way of thinking, learning and interacting with the world. I’ve said many times, if you want to teach my children about a subject, show them. Reading a text isn’t how they learn best. Showing them a movie, taking them to a location to see the subject, giving them something to hold and touch is how my children learn.

How Do You Know It’s Autism?

You don’t…well at least at first. In the beginning you know something is different and unique. You suspect there is something about your child that defines them that is atypical. For me, my son didn’t make eye contact with me and he was completely disinterested in playing with toys the typical way. For example, he only played with the tags of the stuffed animals. As time progressed, he developed unique attachments to unusual objects and subjects. (He collected used batteries!) One time, he smashed a beautiful toy fire engine to get to the battery compartment. He SLEPT with a bowl of batteries.

Why Don’t Children With Autism Eat More of a Variety of Foods?

Being picky is often said to describe those with Autism. I call it, “OMG my child is going to perish because of his diet”. I may sound amused now, but when he was seven, his life was in danger due to the elimination of foods from his diet. He spent two months as an inpatient in a feeding hospital, being fed through his nose at first and almost had a feeding tube surgically implanted to save his life. That goes beyond being picky. He does better now, but not by much.

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What is Eloping?

Eloping is when children wander off for no reason. My children with Autism (and other disorders as well, but I’m only speaking from my own personal experience) have wandered off or left safe, supervised situations because they don’t have the same filters when it comes to safety. My son wanted to go outside and since he was supposed to not come out his bedroom door, he decided to break his bedroom window glass and try to climb out. I’m still grateful I was right there and able to stop him from succeeding or getting seriously hurt. Both have outgrown this for the most part. My youngest daughter still has some public safety issues.

Why Do Children With Autism Go To “Regular” Schools?

This is a tough one. There is a world used regularly today called inclusion. It’s an important step to allow all children, whether disabled or not, to be educated together in the best way possible. It is a concept, in practice, that has wonderful intentions and great consequences for many. However, also for many, they are educated in schools not equipped to handle their needs and they are often undereducated and socially promoted. Often these children are given accommodations and services that supplement their school experience, but it is, from time to time and in my case, an uphill battle of trying to get your children what they need to succeed. This can often result in frustration, arguments, and the acquisition of lawyers and prolonged delaying of proper services. In a perfect world, it wouldn’t be this way. There are schools that specialize in education children on the Autistic Spectrum, but it’s almost akin to either winning the lottery (getting your child’s public school to admit they can’t educate them and send them at their expense) or having enough personal income to send them to a special school (most people can only dream of this as tuition can rise into the dozens of thousands in some cases).

Why Don’t You Work?

Hmm. (deep breath) Oh I work. As a widow, I have the ability to supplement my personal income with survivor benefits. Also, my husband died, so my situation is very unique. This provides income and medical for my family and I am very grateful for the fact that I was able to receive it. I also try to do small things to generate income, but it’s very difficult. In many cases, children with Autism have other disabilities that exist alongside (called comorbidities) like Bipolar in my son’s case, Anxiety Disorders and my daughter has a strong Sensory Disorder that makes her sensitive to a lot of things around her. I’ve been told to “hire an in-home babysitter” (pause for maniacal laughter), but since I don’t have $700 a week for a trained in home day care provider, I do it all myself. There are many doctor’s appointments, appointments with Social Security that are bordering on madness. Speaking of madness, there are school meetings that are tedious and stressful and many doctor, psychiatrist and therapy sessions to deal with. I also have to manage the prescriptions and ensuring that all of their paperwork is filled out in its glorious “although it’s 2015, everything must be hand written on 20 page applications with repetitive information on every other page” way. I want to work. I miss working full time with grown ups…BELIEVE ME.

So, that’s a few questions, briefly answered. I could expand on each one and probably will, but they are the most common, for starters. I don’t have all the answers and probably never will, but the conversation needs to begin and those who don’t understand, are afraid to ask or just didn’t know where to start…speak up. Please.

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