Tag Archives | family

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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He’s my son

By on November 29, 2010 in Autism

One of my two year old twins, Logan, has autism, SPD, very significant food allergies, and seizures. The twin brother, Colton, does not. It has been interesting to me, in the nine months since Logan’s diagnosis, the various things people have said in response to that. A neighbor come into my home once and told me, “Oh, what a shame that Logan is that way. But what a comfort it must be that you were able to have one twin that’s not got problems. At least you have Colton and the other kids.” At the time, I was so angry, I invited this neighbor to leave and never come back. But that incident provoked a whole thought process in my brain which turned out to be a good thing!

Yes, Logan has autism. Logan has sensory issues. Logan has food allergies that are so significant that they can ( and have) cause anaphylactic shock. He is the only two year old I know that has a twinject prescription that has unlimited refills. But even with all that, more importantly, he is my son.

I do not love Logan any less than I love Colton or my five other children simply because he has autism and other issues. I do not love Colton more because he does NOT have learning delays, or allergies. While I do have to do things differently for Logan because of his special needs, it does not change the fact that he’s my son.

When I write about Logan on our blog, or introduce him to someone, I do not say, “ This is Logan, he has autism.”. I say, “This is my son, Logan.” You see, that thought process which my neighbor provoked, inspired me to search within myself and come to some carved in stone realizations.

Autism does not define my son. Autism is not the sum of his existence. What autism has done for our family, however, is taught us to sit back and enjoy the little things. Milestones that my other children hurdled as a matter of course, are now something we celebrate. Not because Logan has autism, but because Logan has mastered something new after days, weeks, sometimes months of practice and struggle, without every giving up. We have learned that a victory is a victory, no matter where you are in life.
Logan is not “that way”. Logan is Logan, and that’s all he will ever be. Just as I am me, and you are you. It’s as simple as that. Yes, Logan has therapy to help him. So what? I have spell check to help me, because I have fingers that like to type before I finish a thought. Both therapy and spell check are tools. Everyone has different ones, for different reasons, and it makes you no less of a person, by using them.
Loving your child is all encompassing. Whether the child walks or talks or grows up to be President of the United States, he/she will ALWAYS be your child, and you will always be your child’s parent.

Now, when someone “consoles” me because I have Logan, I simply say, “Why are you consoling me? Logan is a gift. He’s my son.”

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The Balance Between Work and Family Time

By on July 14, 2010 in Autism

Balancing family time with your work can be a challenge for just about any family but when you have special needs children and find yourself struggling to make it to the next pay check every single month… it becomes less of a challenge so much as a losing battle.

I am a web developer, which essentially means that I write code that makes a website work… not the design, but the functionality of it. As such, I do get the luxury of working from home but that doesn’t mean I get any extra time with my family. Quite the opposite really, for the most part. I tend to do my 9-5 like most everyone else does, and then I eat supper and end up with the same decision every single night… do I get in extra work in the evening so that we can afford groceries or do I spend time with the family after supper? I find myself having to sacrifice family time so that I can get extra work in so that I can make ends meet.

It gets especially painful when I buckle my kids into the van and my 2 year old says “Dad, you coming with us?” and I have to say “no, you guys are going swimming without me today… daddy has to work.”

Natalie (my wife) often gets upset that I’m not spending enough time with her and the boys, my 2 year old often gets upset when I leave… for example, Sunday mornings are supposed to be my day to sleep in, but he absolutely will not allow his mom to get up with him. It has to be me. And he’ll cry the entire time that I’m not up. We know that it’s because he doesn’t get enough time with me.

It’s really hard on them, it’s really hard on me. I have people asking me to do work for them all the time, and when I see a chance at extra income, I just have to take it… having to figure out how to stretch $20 for a week until the next paycheck gets pretty old pretty fast.

It’s great that there are charities out there funding research and setting up programs to help our children learn and grow… because there’s no way I could afford that stuff. I don’t think it should be up to them to help us out just so that I can spend more time not working, but at the same time, I really think that we (and by we, I mean all families with special needs children) could really use some extra help sometimes.

I really love my family time, I just wish I could get more of it.

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Autism Denial – Einstein Didn’t Talk Until He Was Four

By on May 12, 2010 in Diagnosing Autism

In my experience, the most likely person to be in denial of a child having a disorder like Autism is the parents, primarily the father. However, in my family’s case, my wife and I never denied it for a moment, everyone else did!

At first our family, trying to be supportive, told us that some kids are just like that, some kids are just quirky, some kids just don’t talk until they’re older. When you observe each individual ‘sign’, they weren’t wrong. Every sign that a child has Autism can be viewed as just a quirky thing that some kids do, when you look at them individually. But when you group all the signs together to form a diagnosis, you realize that they’re not just quirks.

Unfortunately, no one really spent time with Cameron as much as we did so no one could really ever know. Being in denial was a matter of convenience for some because it also meant being supportive at the same time, helping us feel that there was nothing wrong. While that is appreciated, it’s not what we needed, as parents. What we needed more was information. “Awareness” means more than just knowing it exists.

The next case of denial came from the most unlikely of sources, our family doctor. He is an extremely smart and gifted doctor and has a wealth of knowledge in many areas, we are lucky to have found him. But when we brought up the word Autism with him, he immediately dismissed it, assuring us that his quirks and delayed speech are fine.. there was still a lot of time for him to “catch up”.

Did you know that Einstein didn’t talk until he was four? Did you know that he didn’t form complete sentences until he was nine? And he was fine! He was brilliant.

Perhaps, but I’d venture a guess that if Einstein were a child today, he’d be diagnosed with Autism. And the thing with Autism is, no two children are the same. maybe he beat the odds and went on to become a brilliant man, but obviously that isn’t true for everyone. Telling me that Einstein was a delayed speaker does not put my mind at ease when I look at my son at the age of 2.5 who is still unable speak.

Eventually we got into workshops, got speech therapy for Cameron, learned all new ways to teach him, diet tips and more and by the time Cameron was 3, he had a pretty full vocabulary. He’s approaching 5 at the time of this writing and he can speak as well as any other 5 year old.

The reason I mention this is that we’re still facing denial from family and friends who now approach us saying “he is so smart, he seems to be a perfectly normal child… are you sure he ever really did have Autism?”

It hurts a little, to have people dismiss 2 years of very hard work that we’ve done… saying that he must have been perfectly fine all along. But it’s also very flattering and a wonderful compliment as well. After all, what could be better than for people to think an Autistic child is not Autistic??

Those who are close enough to us to spend a decent amount of time with Cameron know the truth. They see it. They realize the extent of what Autism can do when a child is at their worst.

All I can say is, if you suspect Autism, or you know someone who suspects it in their child… don’t deny it. Don’t be supportive by comparing their child to Einstein. Instead, help them get the information they need to find out for sure. Maybe, with your help, they’ll get their child all the help they need that in 2 years others will ask them “are you sure they ever really were Autistic?”

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