Tag Archives | denial

Autism, Fathers, The Future and Denial

Is this what a father sees?

Is this what a father sees?

Far too many moms have asked me why their husbands might be in denial or worse yet, cold and distant to their child. Once they got the autism diagnosis, everything changed.

Many fathers struggle with it. It’s not just fathers though but mostly fathers it seems. And I think there are many reasons, denial being the most obvious but I think it’s more than that.

For most moms, when a child is born, they envision a bright and beautiful future for that child but it’s pretty abstract. Go anywhere, do anything.

For most fathers though, it’s usually much more specific. Like doing things with their child that they had done with their own fathers, or teaching the child how to do things that they love to do or having their child follow in their footsteps or even more so, to exceed those footsteps and be a much better person than they were.

And with an autism diagnosis, all of that is destroyed and it feels like it has been ripped away from you.

For moms, because their vision is so abstract, it doesn’t feel so devastating to lose. For many, it never even feels lost, just… it’s going to be different.

But many dads have a very hard time coping with that. Not many people like having their dreams ripped away from them and even less so to have their dreams for their children taken.

That can make a man distant and even seem cold. They sort of give up.

I’m not saying this is true for every father. As I said, there’s a lot that goes on in a person’s head when their child is diagnosed with autism or anything really.

But, if this is the case, or even just denial, then it may just take time to accept that, even though his dreams may be gone (they may still not be actually, who knows?), there’s still room and time for new dreams. A child is a child and even if the future seems less certain now, it still filled with unlimited potential.

If it’s your husband or anyone else you know that seems to be struggling with this feeling, all I can suggest is time, patience and perhaps a gentle reminder:

There’s still so much life left to live where anything can happen.

It would be a shame to miss what will happen because you’re too busy focused on what won’t happen.

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How many beautiful lives will go unlived due to Autism studies?

The latest Autism Study of the Month is about the likelihood of a younger sibling having Autism when there is already a child in the family with Autism.

I had already discussed how important it is to make family decisions with your heart, not your fears… and how there is always some risk no matter what, even for your first child.

But seeing Google News explode with story after story about it… approx 700 at the time of this writing… I have a new concern.

No FearSpreading Information or Paranoia

At 700 articles, I have to wonder just what message it is that is being sent.

Most studies are negative in nature, focusing on what may be increasing the risks of Autism, but in this case, it’s outright telling people that their next born child will likely be Autistic.

With headlines such as “Parents with one autistic child more likely to have another”, is it really any wonder what the message is?

These studies are important because it brings experts a little step closer to finding real answers but in the general public and in the media, it’s a tool for fear and paranoia.

How many parents will these 700 articles reach?
How many of those parents will make a conscious decision to not have another child based on this study?
How many parents will have their family forever impacted by fear?

The Result of Fear

So you’ve decided to cut your family short for fear of having a child with Autism… let’s discuss:

  • The study found an 18.7% chance of having a child with Autism when you already have a child with Autism. That means that you have an 81.3% chance of having a child without Autism.
  • Is the child you already have beautiful? Amazing? Wonderful? Your next child will be as well.
  • If you only have one child, will you be improving that child’s life or robbing them of a loved one that they can love, cherish, grow with, protect and depend on?
  • Would your child have had the potential to be brilliant? A leader? Inspirational? An artist? A parent?

Lost Potential

I’m not trying to tell you that you have to have another child. If you were already debating/discussing it prior to this or other studies, that’s perfectly understandable. My wife and I did the same thing.

But basing these decisions on the fears created by studies in the news saddens me.

I can’t help but think of the lives that will never be lived, due to fear. The people that could have been presidents, doctors, teachers, parents or even, if they did turn out to have Autism, would have been beautiful people regardless of the titles they could or could not obtain.

My child with Autism is wonderful, he’s amazing! Why would I choose to not have another child when I have such a beautiful life growing before my eyes?

Children, all children, with or without Autism, have limitless potential. Even those that are non-verbal can sometimes surprise you. You just never know what can happen.

Let’s Talk Odds

Since we’re discussing odds, let’s look at some other odds for you and your children:

  • Odds of being the victim of serious crime in your lifetime: 20 to 1
  • Odds of having your identity stolen: 200 to 1
  • Odds of dating a millionaire: 215 to 1
  • Odds of finding out your child is a genius: 250 to 1
  • Odds of being considered possessed by Satan: 7,000 to 1
  • Odds of becoming a pro athlete: 22,000 to 1
  • Odds of winning an Academy Award: 11,500 to 1
  • Odds of becoming president: 10,000,000 to 1

These are some great reasons to be living in fear, to be living a goal, to be optimistic, to be pessimistic and simply… to be alive.

You can’t beat the odds every time, you won’t be a victim of the odds every time either.

The point is to live your life, to enjoy your life and to do with your life what you can while you can.

Don’t snuff out the potential of your children before they ever even have the opportunity to be conceived.

If you want another child, if you want to fill your family, if you want our child to have a younger sibling… do it.

Do not replace potential with fear.

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The risks associated with having another child

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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Should you tell a stranger if you suspect their child may have autism?

Recently, the folks at Babble.com asked the question “Would you tell a stranger if you thought her child might be autistic?

parentsDepending on your convictions, you would likely answer it pretty quickly, one way or another but after putting some more thought into it…. well, let’s just say there are some very good arguments for saying yes or no.

As an example, let’s say you go to a community event where you meet new people and all of the children are playing. One child is not playing with the others, aligning toys in a row, making repetitive actions and the mother seems oblivious to any of this. She just thinks that her child is going through a phase or is “quirky” (we’ve all heard that one, right?).

Do you say something to her?

I’d like to go over some of the thoughts on this:

It’s none of your business

One of the most obvious answers and likely to be the most common is that it’s none of your business. They’re not friends, family.. you don’t know them. If they don’t know, that’s their problem. Let them figure it out in due course.

In theory, if you believe in that sort of thing, everything happens for a reason. If you interfere, you may be altering their course which could have been set for a reason.

But then one could argue.. perhaps you were there, at that time, to witness the autistic tendencies as part of that “everything happens for a reason” path and you were meant to say something…. hmm….

Either which way, is it your place to be making such assumptions of other people?

Will she be offended?

Most of us would assume that acting on behalf of your best interests would be a welcome and appreciated action however we all know better. Parents don’t appreciate other people pointing out their children’s flaws, much less giving them a label… certainly if that label is associated with a disability.

Some parents would even go so far as to hear “retard” in the place of “autism” and be ready to fight you for saying such a thing. Rightly so, the “r” word is not acceptable but many people still think that it and autism are the same thing.

Early intervention is passing them by

With every day spent in this “phase”, they miss valuable opportunities at getting treatments, therapies, financial aides, a shot at school support (IEPs) and so on. They are letting very valuable time slip by which means that in this case, ignorance is not bliss.

We all know the motto and there’s even a news story now that explains it well in terms of insurance coverage: Pay Now or Pay Later

Indeed, it is true. If that mother makes no effort to help her child…. what will the child’s future be like? If you don’t say something… their future could cost them a lot more than what some therapy would cost them now.

Are you certain of their situation?

If it’s a total stranger, chances are you don’t know. This person could be in denial, which means they know but don’t accept it, they could know but just not want to tell others (“a phase” sounds so much nicer than “disorder”) or this person could truly just be oblivious.

You really don’t know.

You also really don’t know if it’s actually Autism. Perhaps it’s something else (yes, there are other disorders which look similar). Perhaps, and this may shock you, it actually is just a phase. Yes, these things can be a phase in some children that they just move on from.

If you’re not a trained professional, and even then, it’s iffy, is it really your place to make all of these assumptions about their situation?

A responsibility to each other and our community

If you saw someone about to put their hands into a wood chipper… and you knew they’d lose their hands and struggle for the rest of their lives from that moment on… would you do something to stop it?

Do you have a responsibility to help others? Well, in the case of physical harm or death (dangerous situations), yes you do. In fact, you could be arrested and charged if you do nothing…. unless you’d be putting yourself in harms way to do it. Anyway.. you get my point.

In this case, it’s obviously not that black and white and Autism certainly isn’t life or death (although some would argue that with the number of wandering cases in the news continuing to increase).

But for the future of that child, maybe even the parents (if the child remains dependent for life) and even for the community around you that may have to pay for this child should he end up in a care home… if you say something now, you could help avoid all of that.

If you say something, the parent listens, a diagnosis is made, resources made available and all goes well…. the child’s life, parent’s life and even the community itself could benefit.

Conclusion – It Depends

Ultimately, there is no right or wrong answer.

Some situations are more obvious than others, some people seem more receptive than others, some people are better at broaching the subject with others… so the answer has to be… it depends.

Still though, I think the odds are that no.. you shouldn’t. There are more reasons not to than there are reasons to do it.

It’s unfortunate that autism still has such a stigma attached to it that suggesting such a thing would be so offensive.

Perhaps, as society grows and awareness (also understanding and acceptance) of Autism increases, maybe then it would be more acceptable to talk to a stranger about it like that.

I dream of a day when people are aware and unafraid to hear that their child may have Autism. Not that Autism is such a good thing but they know more about it and more about what to do should their child be diagnosed with it.

Right now, it’s still very much unknown among the general population. It’s a mystery. People know there is no cure. People know that it’s very expensive for therapies and treatments. People don’t know what Autism really is or that some people do live a very full and rewarding life with Autism.

With further education, with further understanding and acceptance, perhaps the answer to this question will be far more obvious… and far more positive. And when that happens, everyone will benefit from the kind word of a thoughtful stranger who only wanted to help.

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Denial: The Worst Thing You Can Do For Your Child is Nothing

As a father, I get a lot of moms asking me about denial when it comes to their child with Autism. It’s because most of the time, if a person is going to be in denial over their child’s diagnosis, it will be the father. Now, this isn’t 100% of the time obviously, but generally speaking, men do not want to hear that their child “is retarded”… I know, that’s harsh but that truly is what goes through their mind when they hear the diagnosis.

It’s amazing that we’ve come such a long way from our barbarian ancestors and yet many of us still can’t accept that there may be flaws in our offspring… that they aren’t perfect.

It’s not as crazy as them wanting to cast them off a cliff for being imperfect, it’s just that they don’t want to admit that their child has a disorder, they just keep telling themselves that their child is just taking longer to develop.. they’re just struggling… they’re just not ready… they’re fine.

Now, I can’t emphasize this enough so I’m going to repeat it several times… the worst thing you can do for your child is nothing! If your child has Autism, doing nothing means putting off their road to recovery. If your child does not have Autism, what harm did it have in helping them learn to talk or walk or socialize?? What harm is there in finding out more information??

For each and every single day that you put off a doctor’s visit, a therapy session, a chance to read up on some material or a chance to talk to an expert, you are putting off your child’s entire future… and you’re not just putting off their future by a day, you may be putting it off completely.

That one day of extra work could have made the difference between a communicative adult with Autism in the world and a communicative adult with Autism still living with you at home. Think that’s extreme? It is. And it’s the grim reality of it… every single day, every single moment… makes a difference.

It’s true that early diagnosis is key to treating Autism, but it’s just the key. You have to use that key, open the door and go through it and until you do, the diagnosis was for nothing.

Being in denial about it, refusing to believe, refusing to accept… you’re shutting the door on your child and on your child’s future and for what?? You’re pride? Will you feel good about it in 30 years when your child still doesn’t talk? hmm… that sounds extreme too, but again, it’s the grim reality of it.  It’s the risk you take when you say no. It’s the risk you take on behalf of your child when you do nothing because again, the worst thing you can do for your child is nothing.

In fact, most often times when a father (or either parent) is faced with an Autism diagnosis that they are denial with, they actually spend even less time with their child than they would have if they hadn’t gotten the diagnosis when in reality they need more attention. They need your help, your love, your guidance. And if you are not there to give it, you haven’t helped, you’ve condemned.

I’m not here to make you feel guilty if you refuse to believe your child isn’t perfect, I’m here to help protect you from the guilt you’ll feel later when you finally do realize that if only you had acted sooner… your child would have been so much better off. You can’t go back, you can’t erase the guilt.

All you had to do was act. All you had to do was be there. The worst thing you could have done was nothing.

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