Sunday, May 13, 2012

Parents Just Don't Understand

I had a gentleman at church approach me the other day and ask if I was open to ideas about things to help with Konner. I of course said, “Sure I’m up for suggestions”, and he proceeded to talk about things he might be able to pass onto me. This seems harmless, but it can sometimes cause more issues that expected.

This is a loaded question after all. When he asked he was a little hesitant. This is because parents can sometimes take offense to other people telling them how to raise their children. Even if they are only trying to help it can seem like they are just trying to say, “You’re not doing it right, here is what you should do.” This is especially true for a parent of a child with special needs. I mean, how can YOU tell me something about my child. You have no idea what I deal with everyday.

I knew this is not what he was saying, but in the past I have felt this way several times. Anytime someone says, “Have you tried this?” I want to say, “No, I’ve lived under a rock and can’t research anything.” “We’ve only recently (four years ago) had this diagnosed, I haven’t had the time to check out some things.” Or, “Oh, and what is your child’s diagnosis?”

After all, why do they think they know better? What makes them the expert? Do they know all the research that I’ve done over the years? Don’t they know the old saying that once you’ve met one child with autism you’ve met one child with autism? Don’t they know that what could be good for their neighbor’s child, their grandchild, or the child down the road may not be good for all children?

The answer is no. They are just trying to help. This is something we have to continue to remind ourselves.

It’s tough enough to raise a child with a disability, you take everything offensively. What you should do is be nice and say, “Thanks for the advice, I’ll look into it.” This is what I try to do.

Let me share my top five pieces of advice I get most often:

1.       You should take that child out and spank him. This is one that I’ve never heard directly, but I know some that have, and have heard it uttered under the breath of fellow restaurant patrons. This only makes matters worse. Trust me, I have tried.

2.       Have you tried the gluten-free diet? This is a great one. Not that the diet doesn’t work. It has been shown to work with numerous children. The problem is that some kids, like Konner, have a hard enough time eating as it is. There are only certain items we can get him to eat, and for a while we couldn’t even get him to eat his favorites.

3.       Isn’t there a special school where you can take him? Look, I don’t even know where to start with this one. Yes there is. It’s expensive. It’s not very close or logical. It’s better for us to leave him in a mainstream environment. We need to change this way of thinking for society. The list goes on and on with this one.

4.       Have you looked into therapy? Yes, we have so much therapy in a week that we probably couldn’t squeeze anymore in if we wanted to, or could afford to.

5.       Are you sure he’s autistic?  Ok, I don’t get this one as much I you would think, but when he was first diagnosed we had several “experts” tell us, “I don’t think he’s autistic.” Well, the diagnosis from a psychologist who specializes in autism seems to disagree.

6.       Oh, I’m so sorry. While this is not advice it does rank up there. I think the most annoying person to tell me this was the pediatrician when we first found out. I always say, “I’m not asking for sympathy, just understanding.”

7.       You shouldn’t take him to the (store, restaurant, etc.). Great advice if he had a disease that was contagious. I’m sorry that he’s ruining your meal and disturbing your night out. I’m actually using the time in public to help him deal with this so that he isn’t like this for the rest of his life. Thanks for helping him deal with rude people. That will also come in handy later in life.

8.       You should make more time for yourself, or You and your wife should go out and get away. This is also good advice. The tough part of this is finding childcare. We can’t just leave the boys with anyone. It’s tough getting someone who knows how to deal with Konner. The family helps out so much. They are a blessing to say the least, but they have lives too. It’s not as easy as it sounds. And, both boys together is like a death wish for a babysitter.

9.       My child had a meltdown the other day. I’ve expressed this one before, but it is a pet peeve of mine. Let me explain that until you’ve had a child with autism, or other related issue, you’ve never really seen a meltdown. I’m not trying to downplay a good temper tantrum; I’m just saying that an uncontrollable outburst is much more difficult than a child trying to get his/her way. When you’ve looked into a child’s eyes and have seen that glassy, helpless look and know that there is nothing you can do to comfort them you understand the powerless feeling of a meltdown, and the pain that your child is in.

10.   What do you think causes autism? Man, that is a great question. I have several opinions, but I couldn’t tell you for sure. If I knew I’d probably be rich. I know it’s just someone asking an innocent query though.

What we really need to do is just listen to each other. There have been several occasions where those parents, who are just trying to help, have given me some advice that was truly helpful. I’ve even used some information from researching them for my column. The main thing is to do what they are doing and spread the word. This is the true idea behind starting my column, and in a sense I’m just doing what they are trying to do by sharing that information with others.

For those who have given me this advice, or asked these questions, I don’t want to give the wrong impression, although I think at this point it’s going to sound bad either way. Don’t think I don’t appreciate the advice because I truly do. I really take every piece of advice the best way, and research because, as I’ve said before, we have to do everything we can to help our children.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

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