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Balancing the attention between one child with Autism and another child without Autism

By on October 5, 2011 in Autism

One of the most powerful scenes in the NBC hit tv show Parenthood, for me, was when the father sat down to talk to his daughter about how he missed her soccer game due to her younger brother’s Aspergers diagnosis. He needed to be somewhere with his son and couldn’t make it to her big soccer match.

He apologized for how disruptive it had all been for her the last couple of weeks, at which point she says “Weeks? Dad… try years.”

It came as quite a shock to him as she sat there and listed off a bunch of events in their life that was affected by Max (her younger brother with Aspergers)… “ever since I can remember, it’s been all about Max.”

It’s at this point, I wished television had a “look inside his head and see what he is thinking” component but it doesn’t.. in a way, it’s a good thing because that leaves you and I to really take it in with him and realize…. wow.

Advice on how to maintain balance

Cameron and Tyler

Brothers

I’ve had a lot of people ask me lately how I maintain balance between my two boys, Cameron (6yrs old with Autism) and Tyler (3yrs old without Autism)… the truth is, I just keep them both and the need to keep them balanced in my mind.

That may be hugely over simplifying it but at the core, that’s it. I am just always conscious of it and even concerned about it. I don’t want either of them to ever feel left out. So every time I’m with one of them, I wonder what the other is doing or thinking.

Cameron is in a special class, it’s a very very different class from Tyler’s class. He gets better technology to use, there’s less children, more adults and even though the routines are more strict, the structure is less so. Being a class of autistic children, there’s no real curriculum, not in the sense that some other classes have anyway.

We’ve missed out on carnivals and amusement parks because the noise and crowds would simply be too much for Cameron. That means that Tyler has missed out as well. We have avoided some restaurants because Cameron might be overwhelmed at them… that means that Tyler has missed out as well.

Right now, Tyler is 3 and so, that old cliche about not missing what you don’t know about applies. But soon he will…. and he may resent having missed out on some things in his life due to his older brother.

So, every time we don’t do something or change something to accommodate Cameron, we have to keep Tyler in mind… going to a different restaurant, or someplace else that is fun.

It likely never really balances exactly but it’s something. So long as you’re conscious of it, it’s something. An effort will be made.

It goes both ways

When Cameron was little, like, really little, he needed some snuggle time with me every single morning when he first woke up. As he got a little older, he rejected that idea. He not only didn’t need it but didn’t want it. Now he enjoys a hug from time to time, we have our routine hugs and kisses before bed but any semblance of affection in the traditional sense beyond that is nowhere to be seen. Which is ok by me. I know he loves me with or without it.

Tyler on the other hand loves to snuggle while he watches tv, gives me hugs quite often and is not shy about showing his affection at all.

Sometimes this has me wondering though, as I sit with Tyler on my lap watching tv while Cameron is in a chair across the room… does Cameron feel left out?

I have asked him multiple times and will continue to do so from time to time, if he’d like to sit on the couch with me, he always says no… and I respect that. Still though, a part of me wonders if there’s a small part of him that actually would like to but prevents him from doing so. I’m not sure I could describe it adequately enough but you get the idea… a part of him longs for that show of affection but a bigger part of him prevents him going through with it.

It’s also entirely possible that he doesn’t feel left out at all and really couldn’t care less that I snuggle with Tyler and not with him. Unfortunately, there’s a good chance that I’ll never really know for sure… or if I do, it’ll be later in life… when it’s too late.

The future

The problem with all of this is the resentment… what we all fear of our children, regardless of special needs. The last thing we want is for our children to resent each other for something that was our, the parent’s, fault. Something that we could have done better, avoided, recognized… done something about.

Hindsight… it hurts because by the time you get it, it’s too late.

Unfortunately, I don’t know your family dynamic, I don’t know you and I don’t know you’re children… so I won’t be writing any blog posts on tactics to use or methods to apply to your daily life. The only thing I have to offer is…. keep it in mind.

So long as you keep yourself aware of it, you’ll do something about it. Your mind kind of makes you do it.

There are quite a few articles out there, by doctors, with good suggestions… like having nights dedicated to each child, having “desires” lists for each child where they each get to have their desires fulfilled… putting them on equal footing…  some of those articles will have some insights that may help you.

But ultimately, only you can know what will and won’t keep things fair and balanced. In fact, chances are you won’t know, not at first. But you’ll figure it out… so long as you always keep it in mind.

Me?

I give Cameron an extra “I love you” from across the room while I have Tyler sitting on me. I just like for Cameron to know that Tyler may be on my lap, but I’m thinking about him too.

See? It’s not complicated. It’s not worth putting into a “how to” article to share with the world. It’s something I do… you’ll find something you can do.

Just remember, it’s not just the negatives (missing out on things, avoiding fun stuff, etc) that cause resentment… it’s the good things too (showing affection, spending more time with, etc).

Keep each child in your mind equally because they are equals. They deserve to be treated that way.

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Autism blogging – pro tips from an amateur

By on September 21, 2011 in Autism

I thought I’d change things up a bit with this post, rather than writing about Autism itself, I’d answer a rhetorical question I get a lot. Yes, I know rhetorical questions aren’t really meant to be answered. But in this case, I think it makes for a good blog post.

What is so different about your blog?

blogThe honest truth is that I’m really not that great at writing, as some people continue to try to convince me. It’s just that I always try to keep some key things in mind as I write, which has come to serve me rather well.

Here are some basic rules that I try to follow:

Never assume the reader knows me or my children

I treat every single post as if it’s the first post that the reader has ever read of mine. I do have a lot of subscribers and other returning readers but I also have to keep in mind that every single day (hopefully), there will be new readers too. That means that this blog post right here is being read by someone that hasn’t read a single word from me before today. Maybe it’s you! Welcome.

I sometimes allude to a bit of my back story and will often put in links to previous blog posts that covers that back story more in depth. That way, if someone already knows it, they can skip it and if they don’t know, they can either go and read it for more info or they can just skip it, being satisfied with the small bit I shared.

It also means that not every single reader knows my boys… so I always make sure to add in a little about them each time I mention them. For example, Cameron (6yrs old, has Autism) and Tyler (3yrs old, without Autism).

This way, a very short and little burst of info and presto, people now have what they need to know as they continue reading from there… whether it just be the rest of this post or any new posts they may read of mine from here on out.

“Never” and “Always” are two words you should always remember to never say

It’s a funny sentence but in this case, an accurate one. In the world, especially the world of Autism, there is no “never” or “always.”

No thought, feeling, experience, belief or anything else is 100% consistent for all people that will read what you write. This is especially true when you hit hot button topics such as person first language or vaccines.

But it’s also true on even the most trivial and mundane of topics as well. You could write about something cute your child said or did and the moment you try to suggest that everyone would feel something, or no one would think a certain way…. you’ll find yourself being corrected.

It’s much easier to simply assume that absolutely nothing… and I mean nothing… is going to be a mold that everyone fits into. No treatments, no symptoms, no experiences, no thoughts… nothing.

Be careful to use “some” or even “most”… and when you do, add in “in my opinion” or “in my experience”… because, if you were to be honest, that is the truth. When you make assumptions for others, you do it based on what you know, in your life. So maybe, in your experience, most people would do or say something, but that doesn’t make it true of all people… right?

Also, keep in mind that people with Autism, especially children, are not all Aspergers or HFA (high functioning autism)… and likewise, don’t assume that all parents have children that are non verbal, unable to toilet train or other “more severe” effects. It’s easy to get caught up in our “own little world” but as we right, we have to ensure that other parents can either still relate to what we right or to understand what position it is that we’re writing from.

You’re not writing a book

This encompasses a bunch of tips… first of all, keep in mind that if you’re primary target audience consists of Autism parents, as mine does, chances are they don’t have a ton of time to devote to a blog post. In fact, yours is probably just one of several that they’ll be visiting today. So keep it to a reasonable length unless you’re writing something really really important.

You might not think you need chapters, since it’s not the size of a book, but that doesn’t mean that you shouldn’t section it out. Take this post as an example… I could have put all of these tips into bullet points and then plowed out a big wall of text to go over them, but sections just makes far more sense. A reader likely doesn’t have all the time in the world and will have to skim your posts quite a bit, so you might as well make the job easier for them.

Even if you don’t feel the need for sections, you should still keep in mind that as a blogger, you do have other tools at your disposal. Such as making important points bold and using italics sometimes as well never hurts. Most of all, if you do find yourself staring down a big wall of text, maybe you should try splitting up your paragraphs a bit more.

I like to split up thoughts into different paragraphs, even if they’re just sentences. If I read it out loud later and find that I take a breath and start a new train of thought, I break up the line so that visually, the reader will be able to do it naturally.

Other general blogging tips

Aside from the things I’ve mentioned, I also follow other general blogging tips that you will likely find on just about any blog about blogging… regular updates, lots of proof reading, writing about what I know… all that juicy goodness.

There’s 2 other things that I do that have been invaluable…

1. I tend to get ideas from other people, whether it be conversations, other blog posts, comments or just about anything… one idea I had was from an off topic remark on a home and garden show! When that happens, I quickly go to my blog and start a new post with the general idea of the post and save it to a draft. Having the WordPress mobile app on your phone or iPad is especially handy for this.

Chances are I don’t have time to write it just then and there… so a draft comes in really handy. This is especially handy when I find myself without ideas later… when my blog is needing a post, due to lack of updates, and my mind isn’t coming up with ideas, I can hit my drafts and find some good topics that I never got a chance to return too.

2. Sometimes as I write, I find that my blog post just isn’t turning out how I’d like or I’m simply not happy with how I’m wording things and know that it won’t be as well received as it should be.

When this happens, I hit the “Save Draft” button and call it a night. Not only have I found no harm in sleeping on it.. but most of the time, almost every time in fact, I find it hugely beneficial. When I return to it later and read it back to myself, it comes to me so much easier.

It may mean putting off a blog post a day, or maybe even a while if you just don’t get back to it for a bit… but that’s ok. It’s always there and it’s always usable.

For what it’s worth

Now, all of this I share knowing full well that it’s a take it or leave it post… I am not an expert, I have not been doing this for decades or anything. I don’t even have all that many readers, in comparison to many other blogs.

These are simply the methods that I use. They’ve served me well in the past.

If you have any more thoughts or tips that you use, please feel free to share in the comments. I’m always eager to learn and improve!

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Guilt, grieving and other emotions when your child has Autism

By on September 13, 2011 in Autism

There’s a lot of talk around the Autism community lately over emotions.. such as whether or not there should be a grieving period.. or whether or not we should be feeling any guilt.

“Should be”….  such a funny concept in a world of differences.

In my experience

emotionsI can only tell you about how it went for me… what I felt and didn’t feel. Because the truth is that everyone is different.

I have a pretty typical story in that I had heard of Autism but didn’t know much beyond that until I started to look for answers as to why my son acted the way he did. A lot of repetition, lining things up, aversion to a lot of foods and so on and so forth, had me reading website after website to see what it might be.

I recognized these signs rather early on and was quick to research all that I could… and despite a lot of conflicting stories, I can honestly say that I never once felt guilty about it. I never once thought that there was something that my wife or I did wrong or that there was something that may have caused my son’s Autism.

It wasn’t a foreign concept to me though, as family member after family member and friend after friend asked if we knew what had caused it, or if we were afraid that we had done something to cause it.

As for grieving… I think it’s funny how people have different interpretations as to what grieving is. Most people think that it means breaking down into a crying fit and feeling complete remorse and being depressed for a while, etc, etc.

For me, I think of grieving as simply being worried about the future, about missing the things that you can’t do with your child, or things you won’t be able to do… thinking about potential bullies, potential other issues that may come around (seizures, allergies, diets, etc).

No, I’ve never broken down crying and no, I have no problem what so ever with who my child is or who he will become.. but a small part of me does grieve from time to time. I still want more for him… more that Autism will make very improbable (not impossible).

“Should Be” does not mean right or wrong

What I try to tell people is that there is no right or wrong way to feel. Granted, I do feel that feeling guilty serves no purpose and benefits no one… but it’s not wrong to feel guilty. If anything, the only thing I could imagine as being wrong is if you felt nothing.. if there was no mixed bag of emotions. Because hearing that your child has Autism is a bit of a big deal. It can change the course of the rest of your life.

There is just so much emotional baggage that comes along with an Autism diagnosis that we can’t possibly all feel the exact same things at the exact same time. Some of us might not feel guilty, some of us might not grieve. Some of us, sadly, won’t ever be able to accept it.

It’s not right or wrong, it’s just different.

Fear of the unknown

For most of us, Autism is a very big unknown that can take all those plans for the future that you had and make your future into an unknown as well.

Unknowns are scary. We fear them. We try to justify them, give meaning to them, master them… we try to find the cause of it.

Eventually, hopefully.. we come to accept them. Not just Autism, but unknowns in general. There are just some things we can’t control, that throw our lives off course and we can either feel guilty about it, grieve over it or… accept it.

If you read posts by people that are grieving, don’t judge them because you didn’t grieve. If you read posts by people that feel guilty, as if they are certain that they did something wrong. Reassure them but don’t judge them.  They don’t really need to feel like they’re doing something wrong by feeling like they’re doing something wrong.. ya know?

Everyone is different and as much as we’d like for everyone to hate the people we hate, to fear what we fear, to accept what we accept and so on and so on.. it’s just not going to happen.

We all deal with life differently. It may seem that some people deal better than others, but the truth is that we just deal with it differently.

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Starting the School Year When Your Child Has Autism

By on August 29, 2011 in Autism

This post is assuming that your child has Aspergers or HFA level symptoms and thus, capable and “ready” for school.

The whole school process is a struggle enough. Parents have so much to get ready…. supplies, paperwork, transportation and more. Then you have the child who’s going to be heading out into the world, for the first time on their own, to fend for themselves.

It’s nerve wracking. It’s scary. It’s tiring.

On top of all of that, your child has Autism? This is a recipe for disaster if not prepared for in advance.

I don’t have all the answers, I’m just a guy trying to get my own kids through it but I can share with you some of the things that we’ve done. Maybe some of it will be new to you, maybe you’ll have much better ideas than I do (and please do share them in the comments!)

schoolFirst Year

If this is your child’s first year of school, you’re going to have to do a lot of preparation in advance. This doesn’t start a few months before or even a year before… this should start as early as possible.

  • seated learning time (counting, alphabet, shapes)
  • scheduled snacks/lunches as per strict routine
  • scheduled play time
  • play with others. Whether that means playing “next to” another child or what have you.
  • play groups would be ideal. Learning how to cope in a room with other children

Obviously this isn’t going to be fundamental or even strict for the first little while but as you approach that all important first day of school, it should become more and more a part of the regular routine.

A good idea to get your child ready is to visit the school and the teacher in advance and find out what some of the routines will be.
Also, listen for keywords because they may refer to certain things differently than you would at home.
For example, my son’s school has “nutrition breaks” rather than “lunch”

As part of your build up routine, have your child get up at the same time every day, get dressed, teeth brushed, breakfast in and everything before 8am or 8:30am.

I know that most of those things are a challenge on a good day but the more it becomes a part of the routine, the better it will go over time. It’s far better to struggle BEFORE school than when school actually does start.

Back to School

So your child has been to school already and is just finishing their summer vacation. That’s fine, a lot of the same rules will apply except that your child is likely a bit older which may mean having to rebuild some routines.

For example, your child’s bed time may have been pushed a little later since the sun doesn’t go down as early. Your child may even be waking up later as a result.

Going out to the park, swimming, sitting around and playing video games…. all of these things disrupt the routine and even though they know full well what to expect at school, they may still find it a huge challenge to cope.

About 2 weeks before going back to school, start to ease their bedtime back to it’s regular time. Not at all once but a bit by bit.

The week before school, go back to your school routine. Waking up at a certain time, going to bed at bed time… and everything else becomes school mode.

Get them dressed, fed, cleaned and even pack their lunches in the morning.

To make it fun, use that packed lunch as an excuse for some last chance trips to the park or the lake or what have you. Let them do their lunches as they would at school… meaning, no help (or not much) from you.

This helps them to get back into school mode.

The Best Thing You Can Do Is Not Be A Parent

I know, you just want to enjoy every last minute and make them as happy as possible for every last minute of freedom they have.

But that does very little to prepare them for what is to come.

And there’s no saying that the preparation can’t be fun. You just have to be creative. As I said earlier, go on picnics… give them rewards for a job well done.

Preparation is key, I’ve found. My wife is a master at it and really, this post is just notes as I tag along with her awesome planning.

The only way you can discover, recognize and avoid as many potential pitfalls and issues as possible in advance is to start before the fact. Treat the week before (or even 2 weeks before) as if they were school days so that you can hash out any problems or find out what will become problems before you have to deal with it for real.

That way, failed mornings don’t jeopardize an actual school day. It’s far better that you try to recover at home, where your child is comfortable, than at school where they really don’t want to be.

I’m sure your child’s teacher would appreciate it!

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The risks associated with having another child

By on August 15, 2011 in Autism

Why did I leave Autism out of the title?

Well, that’s because there are far more risks to every childbirth than just Autism. There’s the chance of a still birth, cancer, down syndrome and a whole host of other disorders, illnesses, ailments and can have a child growing up in a hospital somewhere. In some cases, a death sentence. Some children are born with cancer that kills them 2 or 3 years after birth.

What a harsh way to start a blog post right? I know. But I think that sometimes we Autism parents can forget the realities of our situation… there are people out there who have it so much worse.

The reason for this post is that many people have concern over recent findings in a study that I covered earlier today on this blog: Autism Study of The Month: Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study

riskThe risks of any younger sibling

That being said, that there are a large number of risks, you have to realize that any and all of those birth risks are possible in all births. That means, the first child you have has a risk.

Knowing that, any child you have afterwards has an increased risk.

How do I know that?

Well, if there’s a 10% risk of a disorder at childbirth… then having 2 children means you have a 10% chance and a 10% chance.. a 20% chance.

That’s actually not quite right, satistically but for the argument of this article, it’s close enough.

You essentially double your chances by having a second child because you took the risk twice. That increases every time you have another child.

That’s for anything and everything… not just Autism.

What does it say when you don’t take the risk?

So you don’t want to take the risk of having a second child with Autism? Have you ever asked yourself: “Why is that?”

Let’s not pretend that having children with Autism is not hard and it certainly does cost a lot… we all know that.

But is that the real reason? Or is there something more to it? Let me put it this way: If you did have get pregnant a second time and discovered the child would be born with Autism, would you have an abortion?

Take some time to really think about it… is there some level of denial there? What does this say about your acceptance of your child with Autism?

Conclusion

For me personally, I love my son with Autism, not despite Autism. I think he’s amazing and has taught me a lot more in 6 years than I did in the 30 years prior.

Having a second child with or without Autism just does not seem like a risk to me.

I’ve had a few people on Twitter ask me what I thought of the recent findings… they asked me if I would take the risk or avoid the risk.

My response was this:

Decide whether or not to have another child with your heart, not your fears.

Ask yourself if you love your child. Ask yourself if you love your family. Ask yourself if you want to add another beautiful child to your family. Ask yourself what you heart is telling you.

Weigh the pros and cons, I’m not saying that there are no financial responsbilities or unforeseen risks that may arise but be aware that those finances and risks are always there, regardless of siblings or studies.

If no one had children for fear of the risks.. there would be no children.

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