Archive | November, 2010

Resenting or even hating a family member with Autism

My wife just started a new part time job selling children’s clothing at a local store, it’s a perfect job for her since she loves children and she loves dressing them up just as much. It’s been a couple of weeks and so her co-workers have adjusted to her being there and as such, found herself in quite the interesting conversation with one of them.

Cameron and Tyler

Brothers

The topic came up about our children, how Cameron has Autism and Tyler does not. At this point her co-worker shared that her brother has Autism and more so than that, she actually resents him… to the point of hating him.

Now, before I tell you what my wife’s response was to this, I’d first like to speculate just how much this might be the truth for other people out there… perhaps even more people than we might be aware of because it’s very likely that most would never confess such a thing, certainly not to anyone that would ever deliver that news back to the family.

It got me to thinking about it and even though I don’t understand, I sort of do understand too.

First of all, a sibling with Autism is likely to not play well with you, perhaps not even involve you at all and would have great difficulty sharing. Meanwhile your parents would likely ride you to no end to be extra nice to them because “it’s not their fault.”

You’d likely have to have them tag along with you or have them at your gatherings and so forth because it’s likely that your sibling wouldn’t have many friends if they have Autism. It’s possible, depending on severity, that they never really even had a normal birthday party and as such, your parents would impose all these extra demands and responsibilities on you, on your special day, to help your sibling feel involved.

I think you see where I’m going, the list can go on and on… even a high functioning sibling with Aspergers could become a burden on your life that you might grow to resent.

I would hope that most rational people would grow out of that resentment and finally understand what it was their parents were trying to do, but there’s no real guarantee of that happening, especially if the parents don’t recognize that and help it along some.

If the sibling is quite low functioning and needing a lot of help, to the point of (in your mind) stealing all of your parent’s time away from you… well, it’s easy to see where the resentment could grow from there.

Actually, the more I think about it, the more I can see how my wife’s co-worker could feel that way… how I kind of feel bad for her that she had to feel that for so long. Not because she is a bad person for feeling it, but because she never had the guidance she needed to help her understand how much good she was doing in all the things she was likely asked to do, or sacrifice. That she was a needed part of her sibling’s upbringing and life to this day.

I certainly can’t say that she’s justified in feeling that way, no one should resent or hate anyone for having Autism. They didn’t choose to have Autism. But when I put some thought into it, I can sort of understand how it may have come to be.

I think it’s just important that we remember that it’s a distinct possibility in our own children. To always remember that siblings can resent each other no matter the situation but it’s so very easy to happen when one child is “different.” My little one, Tyler, is a very very kind soul and something tells me I will have nothing to worry about, but I can’t ever let it slip though. If we are not careful, if we miss something, he could hold a resentment just as my wife’s co-worker does. And I would hate for that to happen.

So what did my wife say to her in response to that? I’m paraphrasing a bit here but basically she told her co-worker, and all her co-workers:

“Honestly, if any of you deliberately ignore someone who comes in and has a disability of any kind, not only will I call you out on it and set you straight, I will never, ever talk to you again. It’s just something I will not tolerate.”

Not only am I proud of her, but so were her managers. They agreed, everyone that walks in gets treated the same, disorder, disability or nothing.

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He’s my son

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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Hugs and Kisses in patterns

When Cameron was a baby, he loved being swaddled and insisted on snuggle time for a good 15 to 20 minutes every time he woke up, whether it was in the morning or after a nap. It was that way for the entire first year but eventually he grew out of that and instead had a need to be off on his own doing something.

For most of his life, we rarely ever got a hug out of him and certainly never got any kisses, unless he’d let us kiss his forehead or something. It was just something we had become accustomed to as have many parents that have children with Autism.

A couple of months ago, something was different in Cameron. He woke up one day and suddenly he was hugging us all the time. Believe me, we never denied him… it was great!

Recently though, in the last 2 weeks or so, he’s cut back on the hugs once again. He only really gives us hugs before bed except he’s added two bonuses along with the hugs. One is that he also gives us kisses on the cheek and the other is that he does the hugs and kisses in patterns.

It’s never the same pattern from night to night but it is always the same pattern between my wife and I.

What he’ll do is run over and speak out his actions as he does them, for example “I give you a hug, and a kiss and then a hug and a hug and then a kiss and a kiss and then a hug and then a kiss and a kiss and a kiss.”

Once he’s done his pattern, he goes to the other parent and repeats the pattern.

Now, I’m not sure if this is his Autism showing or if he’s just a 5 year old that’s fascinated with patterns, since he’s been learning them in school… but it really is quite cute. And it results in us getting hugs and kisses (on the cheek anyway), so we aren’t about to discourage him from doing it.

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My son likes the good guys, but he just loves Rudolph and Dumbo

If you ask my son what his favourite characters are, he’d likely tell you about Mario, Woody, Buzz Lightyear and maybe even Mickey Mouse. Those are the ones he watches most often and really likes to pretend to be because they have bad guys to beat. They have someone to who’s always trying to stop them and no matter what, they have to be better than the bad guys.

Dumbo and Rudolph

Dumbo and Rudolph

Still, you’ll never see him sit with such a wide eye smile and sense of pride as when he watches movies like Rudolph the Red Nosed Reindeer or Dumbo (the flying elephant).

You see, my son is 5 years old and even though he has Autism, he doesn’t really think of himself as different, like Rudolph or Dumbo would. He goes to a special school that has normal kids on the main floor and children with Autism on the bottom floor. He has other children with Autism around him, he has teachers and helpers with him the entire time and he has never even experienced bullying or teasing.

To him, he’s just another average boy doing average things and well, pretending to be Buzz Lightyear fighting off the evil Zurg (usually played by his little brother).

I tell you this because I often try to rationalize, to myself, why it would be that he’d identify with Rudolph and Dumbo so much. Don’t get me wrong, he doesn’t talk about them too much after the initial hour or two immediately following the movie but just the way he talks about them, the look he has… the way he remembered the details after the very first time he saw them… this was so different than most movie’s he’s watched.

So if it’s not that he feels different and can relate to them, then what is it?

Well, maybe he just sees it in me… I don’t have a mirror but I’m willing to bet that I exude some sense of pride in my own inner need to relate them. To think of my son as the one that could save Christmas or become the star of the circus if he just believes in himself. Maybe he feeds off my energy.

Perhaps it’s just that he likes those types of stories, he wouldn’t be the first. I mean, they are classics for a reason. It’s certainly not unheard of that a child, or even an adult, would like the underdog stories for the sake of how good you feel at the end, when it turns out that they’re not just different, they’re special.

Or, as has been proven to me time and time again, maybe he realizes far more than I suspect he does. Maybe he does recognize his differences from his many family gatherings, trips to see other children and so forth. Maybe he realizes that when we tell him that some foods will “bo bo his tummy”, that he is likely one of very very few, maybe even the only (in his mind) person who can’t eat those things.

I don’t want to get into the topic of when to tell your child they are different or that they have Autism, that’s for another post as I’m not yet at that stage but, I do still wonder just how much he really knows.

I never dismiss anything because I never underestimate him. He’s my Rudolph. He’s my Dumbo. No matter what anyone thinks, I believe that he can accomplish anything that anyone else can and more… I’ll never stop believing it.

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Deconstructing stereotypes

Whether it was the first day of class, first day at a new job, or for any other of the multitude of appointments I’ve had so far in my life, I have always been asked some variation of the following question regarding my last name (Tecpanecatl): “What is that?” My personal favorites were the few times someone looked at me with raised eyebrows and came right out with “What are you?” I don’t believe they intended to be derogatory but that particular question did not deserve a response. Since the name is unnatural to them, they could not help but feed their curiosity with what appeared to be an innocent question. Confused by something new and because they had no point of reference in their mind, they looked for information in order to place me in a cultural or ethnic group familiar to them. Just about everyone feels comfortable when they are able to place people and actions in separate and distinct categories. We have been taught that our actions should meet certain expectations and behavior is strictly monitored from birth. This has created and maintained stereotypes that ostracize anyone that doesn’t fit neatly into any specific category. This pattern of thinking bothers me and I feel it is an obstacle that all autism parents and advocates face on a daily basis.

My oldest son is an adorable and loving 4 year old with autism whose behavior would be considered quirky by those unfamiliar with developmental disabilities. If my name is enough to temporarily throw someone off than I imagine an encounter with my son would turn their world upside down. Telling someone he has autism does not sufficiently explain his behavior. When we are out in public I can see the questions in their stares as my son has a meltdown or starts talking to himself with a type of speech that is not understandable to them. They seem to be thinking to themselves “What is that? What’s wrong with him?” I see their responses and have come to realize that just because more people have heard of autism does not mean they care enough to learn about how it affects a person’s life. Just because my son may not do things the same as other kids does not mean you have the right to judge him or his parents. If people took the time to learn anything about autism and developmental disabilities they would understand why my son may not answer your question (his limited speech prevents any type of conversation), why he refuses to eat certain foods, why he is unable to tolerate haircuts or doctor visits and why he obsessively repeats phrases he hears on TV. These are only a few examples of how someone may label him ‘odd’ without really knowing anything about him. I encourage everyone to spend some time researching autism and its effect on the individual’s development. I read and write about autism because it directly affects my life and also with the hope that we can begin to deconstruct stereotypes that are harmful to those labeled as different. The next time you or someone you encounter falls back on an old stereotype, think about who benefits from that train of thought and most importantly who it is hurting.

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