My Life with people who DON’T Understand :)

Oh I could write a book on my experience with my kids, for those of you who don’t know I have 3 kids with Autism… oh ya Autism, I have heard of that you say..But do you understand it?? That seems to be the thing now days, people just don’t understand Autism, don’t understand the toll it take on the family, the care givers, oh don’t get me wrong I totally love my kids, and I would not change anything in them at all, the only thing I would change is the understanding people need and wishing I would have spoke up more to friends and family, you get to the point your just so tired of explaining yourself and why the kids have acted the way they did so you just shut up and go on with life.

Well let me give you a few examples of what I have learned and why things happen. So you get the kids ready to go to Wal-Mart to shop, well you get to Wal-mart park the car and go in, next thing your children are acting out, people are looking at you as if your kids are bad..hmmm they look normal but they have Autism, problem, well it’s called sensory over load, what the heck is that well sensory overload”: Sounds seem louder, lights brighter, or smells stronger, too many people, too much noise, they literally shut down and they have a melt-down, and well this looks much like a tantrum, still to this day we have them.

Autism is a developmental disorder that some people are born with, it’s not something you can catch or pass along to someone else. Autism affects the brain and makes communicating and interacting with other people difficult. People who have autism often have delayed language development. They usually have trouble with social interactions. Not everybody with autism has the exact same symptoms. Some people may have autism that is mild, while others may have autism that is more severe. Because autism affects people differently, medical professionals call it a spectrum disorder. Two people with the same spectrum disorder may not act alike or have the same skills. None of my kids act alike and all have different affect from Autism. People with Asperger”s syndrome and milder forms of autism can have normal intellectual capabilities, and some are of above average intelligence. However, many people with autism have significant intellectual disabilities.

So eventually you get to the point where you hear family or friends tell you, you need to discipline more, haha well that I will tell you does not work on a child with Autism, why, because you’re dealing with a sensory over load not a behavior, how can you discipline a child when they cannot help what they are doing because for one the lights are too bright, or they can hear the buzz of the light, or to many people and they can hear everyone talking at once, or something they can smell is setting them off?? You can’t, and if they cannot tell you what is wrong well then you have a problem.

So eventually you just stay home, for a lot of reason, for one you don’t want the child to have a meltdown, for two people don’t get it, and for 3 they are more comfortable in their own home, there surroundings, and for four well you’re so mentally drained and just don’t have the energy to go out.

I am TIRED of explaining WHY my children act the way they do, I am TIRED of people trying to change the way I run my home, I am TIRED of people thinking they “KNOW” when they don’t, I am TIRED of speaking and giving the information and NOT being heard, if you cant understand my children then I have no patience to explain when I am not being heard, and that precious time is being taken away from them. I have been doing this for 18 years, on my own and I think my children are AWESOME. If you cant see that, then that’s your fault not mine, I don’t care if my house is not spotless, all the time cleaning is time away from my children, I don’t care that I have 4 dogs, those dogs help my children when they need to be calmed down, I am who I am and my boys are who they are, nothing will ever change that, and I DONT want them to change, GOD made these boys special and I am so very proud of them. I do what I need to do, to survive threw the day, changing our routine or trying to change the way I run things only make it worse for everyone else, especially the kids, that just makes there behaviors worse.

For so many years I tried to keep there behaviors under control to please others especially my family,and I realized this summer that I have only made things worse than better, not letting the boys be who they are and say whats on there mind because they might “offend” someone, or might embarrass someone, well here is how i realized what I was doing and it not only made me feel bad, it was also putting myself on edge and the boys on edge, so here is what happened, we were at a family function and I was visiting with family I have not seen in so long and I had just the twins with me as I was staying were I am from originally for a little vacation and to catch up with family and friends, now keep in mind that my boys imitate “EVERYTHING” they hear good and bad, and well it can come out at any given time, LOL, some people in my family do understand and it does not bother them, so this is what went down, the twins were opening up and talking to everyone which was totally awesome as they don’t do it to often and I was so happy to see, well one of them was imitating what there Dad said to the van when he was fixing it, now keep in mind that as a man, and you men know it that the air can be fairly blue when your doing something that is not going right etc etc..LOL.. well one of them said the word cock sucker, ok that’s NOT as bad as F bomb they like to say, and I will fill you in here, they have no clue as to the meaning of a word, especially a swear, so we have always ignored it as the more you say the more they do, and I have been told by professionals that there are alot of children who have Autism who like that F bomb word as they like the sound, they have no concept of the meaning. WELL the family member who drove me to this function was not at all impressed at this word and well it was time to leave, I did not say anything and I was very hurt as to why we had to leave, over a word, they where doing so well bonding with other family members and now we have to leave, over one silly word, so we left, I was so upset as I myself was having a great time seeing my family and watching the boys bond. Our family live all over and its not very often we get to see one another, on the ride back it got me thinking all the times I did not go to things over the years because of these things happening and the lack of understanding some of my family has. Its sad really because its not only that I missed out so did my children. I called my husband that night and was crying telling him of my realization and how upset I was, he said I know Hun, we did what we thought was right at the time so us as parents would not get the dirty looks, the rude comments, etc.

My Children suffer from AUTISM and they can NOT be treated like a “NORMAL” child.

  • Some people with ASDs may prefer to be left alone, showing no interest in people at all. They may not notice when people are talking to them. This does NOT mean they are ignoring you.
  • Difficulty controlling emotion and excitement can also affect social interaction.
  • Words may also be used without their usual meanings. People with autism may confuse gender, saying “he” when they mean “she” or vice versa, and/or pronouns (I, me, you).
  • ASDs can make it very hard to initiate communication and to keep a conversation going. People with ASDs might stand too close to the people they are talking to. Some people with ASDs can speak well and have a wide vocabulary, but have a hard time listening to others. They might go on at length about something they really like, rather than have a back-and-forth discussion with someone.
  • You can confuse them very easily, giving them to much information at once and then getting up set bc they did not do everything you asked them to do is totally unacceptable.
So with all this said I will leave you with this 🙂

The Ten Best Comebacks for Judgmental Remarks About Autism

1. “You should teach your son table manners” said the woman at the adjoining table in a casual restaurant.

Comeback: “I couldn’t agree more. He even flicked a booger in that dish you just finished eating.”

2. While waiting for their food at the Deli, Sandy finds it impossible to ignore the three women who shamelessly gossip and snicker about her son.

Comeback: She pulls out her cell phone and pretends to make a call, slightly turning away as if she doesn’t want the women to hear. “Luke, it’s Sandy . Tell the producer we should move the show to a prime time slot. I’ve just got some great hidden footage of three grown woman snickering at Jack. By the way, I got your email and I think ‘Attitudes toward Autism’ is a great title for the show.”

3. “What’s his problem?” asks a woman with a stroller while watching Dylan spin in circles. “Retarded?”

Comeback: “He’s not retarded. He’s got autism. And you know, I couldn’t help noticing that your baby keeps touching his toes and then staring at his fingers in the exact same way my son did when he was that age.”

4. “Mrs. Smith,” says the school administrator firmly, “We really can’t accommodate your request for a social skills group. And given that your son’s language is so poor, it would be of no benefit anyway.”

Comeback: “OK. But I see we agree that he needs additional speech therapy.”

5. “You should teach your son to behave” scorned the woman on the beach as she eyed Jordan hovering around her children.

Comeback: “You’re right. And you should be careful. I’m not sure if you’ve heard but they’ve just discovered that autism is contagious.”

6. At a large family gathering, Brian is facing sensory overload. He blocks his ears, squeezes his eyes shut, and then suddenly runs from the table. “That child is out of control” retorts a distant elderly relative, “and if he doesn’t shape up, somebody is going to stick him in an institution one day.”

Comeback: “How ironic! I was just thinking the same thing about you!”

7. While in the clothing store, Joe begins to verbally stim. It’s a repetitive, low monotonous hum but it typically calms him down. “You have some nerve allowing your son to disturb the public like that” exclaims a stranger in disdain.

Comeback: “Seriously? You mean all this time I’ve been completely mistaken about his musical genius?”

8. While standing in line, Zack notices the back pocket of a woman’s jeans. It’s shiny and full of sequins. Before his mother can stop him, he reaches out to touch it, thereby placing his hand on the woman’s behind. Reeling around, she exclaims “How dare you? You should teach your son self control.”

Comeback: “I’m sorry. He just has a thing for very large, round objects.”

9. At a friend’s BBQ, Jolene’s son begins to flap his hands. “What is he doing?” asks the woman sitting next to him. Does he always do that?

Comeback: “Does he always do what? Ignore rude comments? I certainly hope so.”

Children with autism have no physical distinguishable characteristics. It’s hardly surprising then that many characteristics of autism are associated with poor behavior. Parents who have children with autism face judgment at every turn. They need to develop a thick skin to endure the never ending comments, criticisms and stream of parenting advice that keeps coming their way. While sometimes these remarks are easy to ignore, there are times when your patience level reaches the max! The next time you get to this point; why not try one of these great comebacks on for size?

Have an awesome day Everyone 🙂
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Lisa Walker

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