Tag Archives | patience

The imperfect parent

By on June 29, 2011 in Autism

As I go back and read some of my old posts, I begin to realize that I seldom write about the things that go wrong, or that I do wrong or that are just wrong in general… unless it’s a life lesson of some kind that involves my son or Autism.

I started to realize that this is generally true of most blogs since most people write about what they find useful or informative. Little mistakes or things done wrong usually aren’t a topic of choice.

However, this can be a tad misleading as people who read your blog for a year or so might begin to see you as some kind of perfect parent.

Hint: there is no such thing as a perfect parent.

There are some people that we’d like to have for parents, depending on our preferences, but not a single one is ever perfect. Especially in the beginning… and even more so if our children have special needs.

The small mistakes

smarties megaThe other day, Cameron and I were home alone for the day while my wife and other son Tyler were out of town. I decided that Cameron and I should have some fun with games and treats so off to the store we went. He saw some over sized Smarties for sale and really wanted them. Without giving it a second thought, I said yes.

Now, I know full well that M&M’s do not have gluten and Smarties do. I also know full well that we do not give Cameron gluten. But it never even crossed my mind until the next day when my wife said something about it.

Oops.

It didn’t seem to affect him much, but it was still a rather large mistake on my part. I mean, had it of been allergies that could have had serious health risks, would I have had made the same mistake? In my opinion, yes… which is a scary thought.

It’s just far too easy make small mistakes when your mind is elsewhere… like on all the fun you and your son can have.

Some lessons take time

I often write about how Autism has taught me to have far more patience than I thought possible previously, but it wasn’t an instant lesson.

I certainly won’t lie to you about this. You don’t just have a child scream at you and poof, you learn how to have more patience. No, quite the contrary. You lose it at first. You get frustrated, you get mad… you get impatient. Your little one earns time outs when they probably shouldn’t have been time outs, they get early bed times when really they probably shouldn’t have… all too often, I’ve been far more upset with Cameron than I really should have.

Partially it was due to my lack of understanding on exactly what meltdowns were or how they worked. But even still, I knew that he was little, I knew that he didn’t know any better and I knew that it wasn’t his fault. But as a new parent, I did not have the patience to listen to it for long.

I wish I could go back and handle many situations differently.

Practice to the end of infinity and you’ll be perfect

In other words, it’s not possible.

Perfection definitely takes practice but even then, you could practice forever and never really reach it. We all make mistakes and parenting is definitely a learning experience that will give you a lot of practice.

I only gave 2 examples when really I could give you about 500, but who wants to read a blog post that long?

I am far from perfect and I’m not ashamed to admit it. I make more than my fair share of mistakes but I learn from them. That’s why it’s important to have loved ones and friends with you and to keep on learning as much as you can… not necessarily to avoid mistakes but to have them pointed out, explained, shared… and that’s how you truly learn from them.

Don’t read my posts or tweets or Facebook information and think that I’m perfect. I’m definitely not. Instead, just understand that what I’m sharing with you has come after several years of not being perfect.

I don’t know if I’m learning how to be a good parent but I’m definitely learning how to be imperfect!

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What to say and not say to a parent that has a child with Autism

By on May 30, 2011 in Autism

I’ve written quite often about how having a child with Autism forces you to have far more patience than you ever thought you could have… but there are still limits. And even though your patience levels can seem limitless for your child, you may find that you don’t have the same tolerances when it comes to others or some of the ignorant things they say, whether innocently intended or not.

There are a few lists out there of things not to say to us parents, but this is more of a list of things not to say or else you may just push us beyond the breaking point. Don’t worry though, I’ll follow it up with some things that I think would actually be nice to say.

do not sayDo not say

  • Your kid just needs proper discipline
  • My kids would never get away with that
  • What made your kid autistic? Was it something you did?
  • You shouldn’t take your kid out if they’re just going to be like that.
  • Your kid doesn’t look autistic
  • Are you sure your kid is autistic?
  • Why would you have more children if there’s a risk they could have autism too?
  • Have you thought about a group home or institution for your child, so that you can go back to having a normal life?
  • Sorry, I don’t really want my child to play with yours.
  • Your kid is defective
  • Your kid will grow out of it, right?
  • Autism? That’s like Rain Man, right?
  • It must be nice to get special funding or special help!
  • I hope my kids don’t end up like yours
  • You need to watch your kids better
  • Maybe you’re just bad parents
  • But all children do that
  • But your kid was so good for me
  • Referring to your child with a nickname such as “rain man” or “stimmer”

Yes, these are actual phrases I’ve heard or have heard second hand (parents told me someone said it to them). Ok, now that your blood is boiling, let’s continue on.

Here are some nicer things to hear.

Do say

  • You’re doing such a great job
  • I don’t know how you are able to do so much
  • Your child is progressing so well, you must be very proud
  • If I can help, just let me know.
  • I don’t know much about it but I’m willing to learn
  • I’ve read some studies, heard the news but I’d love to hear what you think

I’d love to hear from you. What have you heard or what would you like to hear? I’ll update this post with good suggestions.

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Let me tell you a little about celebrating Autism

By on February 13, 2011 in Autism

When I tell the average person that my son has Autism, they feel really bad for me. The fact is that there is a lot to celebrate.

Milestones are an achievement, not just an item on a list

When you have a child with Autism, you learn to appreciate the milestones, both big and small. Some would say that we celebrate a little too much for such little accomplishments but I’d argue that we celebrate accordingly, it’s other parents who take them for granted.

First words, learning to walk, swimming, riding a bike, reading, writing… all these things that make parents proud are far more than just steps along the way when your child has Autism… they’re cause for celebration.

Take nothing for granted

Along the same lines, but very different from milestones, is taking nothing for granted. Unless you have a child with Autism (or another disability like it), you’ll probably never know what it’s like to be lucky enough to be hugged one time a year.

Does your child look you in the eye? If your child has Autism, maybe not. Does your child give you a hug or kiss sometimes? If your child has Autism, maybe not.

You will never ever realize just how much the tiniest little things can be so extremely important until they’re not there.

Patience, more than you ever thought possible

The biggest problem with milestones is that everyone knows what they are and when they should happen so when your child is missing them, everyone says something. It’s hard, it’s oh so very hard.

After a while though, you develop a thicker skin… not just the patience required to take their “advice” a little better but also to have the patience and self confidence in knowing that if you never give up on your children, the milestones will come.

The beauty that is around us

The world around us moves pretty fast and can be so filled with sights and sounds that it turns into a bit of a blurry mess. Our mind makes it that way to keep us from becoming overwhelmed, crazy and tired. We filter through a lot of everything that goes on in our daily lives without really realizing it.

Many people, especially the children, with Autism don’t have the same filtering capabilities and often times do get overwhelmed by it all. This often results in meltdowns or even violence.

You, as the parent, become increasingly aware of the world around you because you have to, because you need to know what you are getting your child into. Loud restaurants, carnivals, movie theaters… many many places can be far too difficult for your child to be able to process and you need to be aware of that before the fact.

As you develop this ability over time, it forces you to slow down and truly appreciate the sights and smells and sounds that surround us every single day.

You go outside and there isn’t a car in the neighborhood… it’s so very peaceful. Before you likely never would have noticed, much less enjoyed that feeling of peace, because your mind builds that filter in place before you ever go out and so you don’t notice if there are cars or not.

Your child is perfect because of who they are

It isn’t until others see your child as flawed, and worse, until you start to see your own child as flawed, that you can learn what is truly important… not a disability, not a disorder, not even a gift… a child is who they are inside and who they are inside is exactly who they are supposed to be… your child.

It’s ok if no one will ever look at your child the same way you do, they’re not supposed to. Our children are amazing human beings with unlimited potential.

The difference

Celebrate the differences, not just in your child, but in yourself. For better or worse, you’ve become a better person for it, you’ve become a better parent.  Your child isn’t like other children… and that seems hard to take but honestly, before your child was born, and you saw how “other children” are on the news or in movies… is that really what you wished for when you imagined having a child? For them to be like all the others?

No, none of us want our children to have it harder than anyone else, and no we don’t want our children to suffer… but many of us recognize that we can have these thoughts and these feelings while still being able to recognize and celebrate the differences.

Your child is amazing. You are amazing. Celebrate it… you’ve earned it.

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Dealing With the Outbursts

By on August 9, 2010 in Autism

Cameron’s at the point where, when he does something wrong, the only thing he knows how to do is shout out the most hateful thing he can think of and stomp off. For example, if he hurts his little brother and we get mad at him, he’ll stomp his feet all the way to his bedroom shouting “Tyler is a stupid baby face!” and slam his bedroom door.

“Stupid” is the most hateful word he knows.

It’s not necessarily an Autism trait as most children will do this sort of thing when they’re mad, but it’s still worth writing about because what does set those with Autism apart is their inability to handle or deal with those strong emotions.

This presents a bit of a problem really because it will grow in magnitude unless contained.. you see, you have to deal with it with all children, naturally, but with Autistics, unless you can really help them to learn how to handle it, you’ll start to see more and more of these outbursts at restaurants, family outings and so forth.

At the same time, you have to know when it’s serious and when it’s not because at a young age, and with Autism… just about every outburst can be as loud and hateful as they can make it, whether they’re mildly upset or furious… it all comes out the same.

How do you distinguish? Do you distinguish? Do you handle them all the same or do you let some instances slide and not others?

Temple Grandin once said “You can not punish for sensory overload” meaning, when a child is totally misbehaving because their senses are overloaded, you can’t punish them for that… they’re already in pain! So when a child is already getting hugely mixed signals and lashing out regardless of whether or not they want to be… do you punish them for it?

I believe in raising my child as I would raise him without Autism… an outburst is not ok… hitting is not ok…  however, if I see that there is a cause for his misbehaving such as sensory overload, change in routine, gluten intake or something like that, I will try to find a more ‘lenient’ way to separate him from the situation, get him into his room without him feeling like he’s bad… something like that.

It’s pretty difficult to keep your patience though, when your child is trying to be as hateful as they can after they were the ones that did something wrong… how do you deal with this sort of thing?

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Riding a Bike, How Can Autism Make that More Difficult?

By on July 19, 2010 in Autism

When most people think about Autism, they think of a child that has social problems, probably can’t speak and is possibly even violent. Many forget that it usually affects a child’s motor skills as well, especially when exerting themselves by doing things such as running or in this case, riding a bike.

If you’ve ever watched a child with Autism run, you can see it quite clearly by the complete lack of control of their arms, their body being off balance and their legs kind of kicking out to the sides just as much as moving forward.  It kind of looks like a 1 year old just learning how to run for the first time.

Riding a bicycle is a tricky thing to learn for most children as pushing the peddles forward in a circular motion, one foot at a time, is a lot to process for even the most gifted children but when you lack fine motor and muscle control, it can be near impossible.

In fact, I know some people who’s children are over 10 and have yet to be able to master it. It’s not from a lack of trying, it’s just not in them yet to be able to coordinate all of the body parts at once that it requires to get the bicycle moving.

In my case, I had another issue on top of all of that and that is Cameron’s size. You see, he was the size of an average 5 year old when he was 2. This meant that he was immediately too large to learn how to peddle a tricycle. He never had that first learning step because his legs were too long before he ever had the chance.

We got him a 2 wheeler with training wheels shortly after, so that he’d have a better chance at peddling something with his size but again, he was never able to get the concept.

This is where patience came in, and lots of it… over the span of 2 years.

Cameron got pretty frustrated a lot of the time, not wanting to try after failing at it for a few days… sometimes I even had to fight with him to get him outside to try. But we just kept at it a little here, a little there…

Now Cameron is just 1 week shy of turning 5 years old and after a lot of trying and trying and trying… he can ride! Granted, he puts his feet on the front tire to stop and he doesn’t turn yet… but he has the basics down and for me, that’s the biggest hurdle.

Keep in mind that he’s now the just about 5 and is the average size of an 8 year old… he looks pretty big on his bicycle now, but he can ride it and that’s the important part!

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