Shout It Out Loud

Pervasive Parenting

By Kodey Toney

Shout It Out Loud

April is here and so is Autism Awareness Month. Of course, as I’ve always said, everyday is autism awareness day at our house, but I want to encourage everyone to spread the word; especially this month. Put in your blue porch lights, change your profile pictures, educate yourselves and others, and wear your shirts and ribbons.

I’m amazed at how many people still know very little about autism despite the growing numbers of those diagnosed. The new numbers suggest 1 in 50 now are diagnosed. The real numbers that scare me are those who are not diagnosed. That means there are many children who are not receiving the therapies that they need, and there are parents who are still in denial.

I recently did a poll on facebook to ask what people thought of when they hear the word autism. I asked to be candid and open up because I think many people get the wrong idea if they’re not around someone on the spectrum. I’m going to share a few with you.

One “friend” said, “I can tell you when (I first found out), in my mind I thought that meant he was going to need our help for the rest of his life. That he wouldn’t be able to do things for himself. That he would pretty much be handicapped.”

A former teacher said, “(Those) that I met are so different yet they have taught me to see how unique each of them are. When I heard the word autism I thought of the term ‘uncontrollable’, but that was far from what it was. Each of these children taught me about themselves; whether it was through their actions, words touch, or even their dislikes. My experiences have been (educational). I'm so happy I got to know them. I'm excited to watch them grow up to become adults.”

My grandmother posted: “We took on the responsibility of our great granddaughter before we knew she (had autism). It was a relief to us to finally have a word attached to her problems. We had heard of autism for awhile as we have three babies affected. But (we) never had to actually deal with it ourselves until she came to us. Now we know what to expect and are learning every day how to cope. Believe me at our age it is a struggle sometimes, but her beautiful smile and sweet actions between meltdowns make it all worth it. We have always tried to never judge families with "problem children”, but this has really opened our eyes to things we may have wondered about before.” Konner’s grandma Judy wrote: “I remember the call. For a moment I cried. I suspected autism but of course didn't know for sure until the diagnosis. Knowing what was wrong was an important tool that we needed as his family to head forward in helping Konner to be the best that he could be. I'm so proud of my grandson. He is an amazing young man. I hope every parent that

finds yourself in this situation will work swiftly at getting your child the help that they so desperately need. Be their voice! Step on toes if you have to.”

My mother said, “Konner has taught me how to be calmer, how to love, how to be there when he needs us, even if he just wants to talk. He can make you cry, laugh, and hug. I love Konner with all my heart. He is a very loving and special child in more ways than anyone will ever know. I too cried and refused to believe. Then I (started to) worry. I wouldn’t (trade) him for anything in the world.”

“A mother of three girls from Spiro, one on the spectrum, said, “I was terrified when we went to the doctor and was initially discussing Emma's sudden ‘regression.’ The doctor asked me what I thought might be going on and I burst out in tears and said ‘autism!’ I was beyond terrified. I thought autism meant that I would never have a relationship with my daughter; that she and I would never be able to connect as mother and daughter, and I was fearful that I had failed her and would continue to fail her because I didn't know a lot about this disorder. It has been almost seven years since Emma was diagnosed and I am proud to say that she destroyed all of my initial preconceived notions of what autism was/is/or ever will be again. She is just like any other eight-year-old little girl. She has her own personality. She has a mind of her own. She knows what she wants and how to get it. She is not ‘dumb.’ In fact, she is quite intelligent. What I'm trying to say is that she is an eight-year-old kid. Period! Yeah, she has quirks and "issues" because of Autism and she has challenges still to overcome, but don't we all in some way, shape, or form? I just want EVERYONE to not be afraid of these kiddos or the challenges that may come along with them, give them a chance. They will most likely melt your heart and change your life in a way you never thought possible. Autism is not a scary thing anymore for me. Granted, we've been immersed in Autism for almost seven years now. What's scary now is how others react when you say you have a child with Autism. Don't pity me or my daughter. Look at her and see how far we've come, I promise, it will amaze you.”

One woman responded: “I have worked in daycares with (children with autism) before. I've learned that you just need a different approach with them than other children. I also learned that (these) children are also very smart.”

“My first thought is that autism means, here is a person who processes sensory info somewhat differently than I do, and uniquely to other (people with autism),” said one person.

Another stated, “Unfortunately special because even thou God made them that way they still have a chance to live life. I have a niece that is special and she never ceases to amaze me.”

“Special. One with special abilities and needs,” said another.

One frustrated parent posted, “Just wish God had given us a handbook .Love him so much very interesting.”

“I think quiet and withdrawn from strangers and family too, and a special child at that.”

One of my favorites, “In one word - misunderstood! From the child's perspective it must be frustrating that people don't understand ‘your’ normal. On the flipside, (there’s) the frustration of not knowing how to ‘act’ so you don't cross any lines that might trigger a reaction and feeling bad because you wouldn't do that for anything! I think we all need to be educated, knowledge about anything can be our greatest ally.”

An old friend posted, “I feel bad when I hear a child has autism mainly because of the stereotypes placed on them. Also I feel bad for the majority of ‘normal’ people who are uneducated and classify it as mental retardation when it’s a neurological disorder.”

“It wasn't what I expected,” said another. “The world makes it out to be different than what it is. I truly learned from being in children’s’ church with Konner. I (saw) a very loving and smart boy.”

I found this to be interesting. This shows many different people from different sides of the spectrum giving their thoughts. Hope this helps in some way.