What It Feels Like to Be a Special Needs Dad

I recently read an article titled “What It Feels Like to Be a Special Needs Mom” and I quite enjoyed it. It also dawned on me, there will probably never be an article titled “What It Feels Like to Be a Special Needs Dad” and the reason for this is quite simple, there’s no one to write one.

As the parent of a newly diagnosed child that has special needs, you quickly come to realize that those needs are essentially you. They need you first and foremost. That generally means that mom becomes a stay at home mom and dad has to work longer and harder than ever. Gone are the dreams of date nights with a babysitter at home because you can’t just pick a random kid in your neighbourhood to watch your child and even if you did go out, you’d never be able to stop thinking and worrying about your child. Both mom and dad lose sleep and find themselves with libraries full of information to have to learn. The bills not only stay the same despite dropping from 2 incomes to 1 but the bills actually go up substantially as diets, therapists, frequent trips to hospitals and doctors, special medications, equipment and more are required… all of the time. So as a dad, you now find yourself working multiple jobs or longer hours or even having to find a whole new line of work to make the income as close to the expenses as possible. Guess what you do when you get home? Play with your child? Rub your wife’s sore feet? No, most likely you go right to sleep and wake up to do it all again tomorrow.

While you’re at work, mom is off to those therapy sessions and doctors appointments and soaking in more information than she ever did in years of college and at some point, she’ll have to teach it all to you. You will have to face the fact, more and more and more that you are missing those sessions, those appointments and everything else in their lives. You’re missing it all because if you don’t, there won’t be any therapy sessions or doctors appointments. You’re becoming more and more disconnected from the very family that you are supporting. You imagine there has to be a better way, a more suitable balance but then the next big expense comes in and that thought is gone. Meanwhile mom is going crazy from all the appointments and only wishes that someone else (you) could do one or two of them once in a while.

With mom learning so much and being home, those very rare moments of free time become reaching out points where they find other special needs moms on the internet all seeking the same thing… advice, feedback and mostly, someone that they can relate to. They share pictures of dirty houses and don’t feel so bad about how their own house looks, they share recipes and money saving ideas and for a little while, they feel a connection again. At some point, many moms start to become that source of advice and relation and start blogging, writing articles and maybe even public speaking. So what happens when a dad wants to do the same? Well, as we’ve established, there’s almost no time for such a thing. Dads struggle to maintain a connection with their own family much less other people online. Also, if most dads can’t find the time or energy, who are they going to connect with? Other dads that have no time or energy? There’s likely not going to be very many. Yes, there are some and the numbers are growing, which is great, but it’s still a very small number. Dads could really use people to relate with as well and those that could give them some advice but finding them is near impossible and even more so if you never have the time to sit at the computer in the first place.

If and when you do take a dip into the Internet pool, you’ll find a lot of stigma and stereotypes that may just make you want to get back out as quickly as can. First, most of the moms you find will be talking about how their deadbeat husbands are either in total denial and do nothing to help, they’ve straight up left and abandoned their family or… again, beating a dead horse here, has simply lost connection with their family and here’s mom on the Internet writing about how little they see him or how little he does around the house. Worse than that, and this applies to all dads so just consider this as an extra pack of weights to put on your shoulders, there’s still this “oh so funny” theme of equating dads to being just grown up children that mom has to take care of too. There’s this constant running joke about how immature men are and how wives have to take care of them just like they do their kids. This is extremely hurtful and insulting and even more so, sends a terrible message to your own children about how they should think or respect their father. As the dad a special needs child that is at the breaking point pretty much every single day for years and years, it’s tough to go online in search of those that can relate to you only to be hit smack in the face about what a child you are.

One thing all of that will do though, and you’ll feel even if you don’t read all of that, is that you’ll always want to do more but lack the time and energy to do it. Nothing will weigh you down more than the feeling of not being able to do more. More money, more play time, more family time, more visits to the therapists with mom, more making dinners so that mom doesn’t have to, more of just… family. And on those rare days when you can, like a holiday or vacation time or something where you think “finally, family time!”, that’s when the basement will spring a leak or the car will break down or the fridge will die because even though you’ve never done anything but your very best, somehow the universe just thinks it would be funny to fill that “free time” of yours with something that you need to. Visiting old friends? Nope. Dinner out? Nope. Sitting on the couch with your family? Nope. Sorry, that’s no longer things you do.

As the father of a special needs child, you quietly have to go to work and then to bed and then to work and then to bed all the while very aware of the insulting child comparisons online, aware of your wife complaining to other wives and comparing notes about how their husband is never around. You have to quietly wish for more, wish to do more, hate that you can’t do more because if you do complain, oh, you’ll hear about it. How dare you complain when you’re not even there doing anything?  You’ll have to quietly hate that your son will never follow in your footsteps or that you’ll never get really experience that “daddy’s little girl” feeling because if you do complain, then you’re in denial and not accepting your children for who they are. You have to sit quietly and wish that you could see friends more, that you could see your own wife more, that you could actually be the father that you’ve always dreamed you would be… because… because who would listen to you even if you did say anything?

No, there’ll never be a “What It Feels Like to Be a Special Needs Dad” article on any major news sites or anything (and no, this little blog most definitely does not count) because there is no one to write one. And if they did, no one to read it. Moms don’t want to hear it, dads are too busy to write or read it.

There are single parents out there taking care of their kids, sometimes more than 3 children all by themselves and they’re dads. Not the mom, dad. They’re doing it all on their own. It’s far more rare than single moms but they are out there. And because there are no articles written by them or about them or it just seems so impossible to imagine or relate to, they do it quietly, alone. There are stay at home dads too where the mom is almost never home having to foot the bill and miss out on all the family stuff. Those dads cook for their wives, do all the laundry, make and be at all the appointments. They do what needs to be done just as much as any mother in the same position, as does their wife who works and sleeps and works and sleeps.

No, we aren’t like all those other guys that live in denial, we’re certainly not like those dads that abandoned their families and we are most definitely not like the grown up children that you all seem to think is so funny. Just because the articles aren’t there, it doesn’t mean we’re not. Just because you aren’t hearing about all of our struggles, it doesn’t mean we’re not struggling. Just because you don’t read all about our emotions, it doesn’t meant that we don’t have any.

Our special needs child is just as much our child as yours. Moms and dads, working together. We exist. We matter.

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Autism and Thanksgiving – Be thankful for the struggles

Happy Thanksgiving

Happy Thanksgiving

We’re all aware of how difficult Thanksgiving can be when your child has autism. Not eating any of the 38 different kinds of food on the table, becoming overwhelmed and melting down, hurting one of the other children or themselves, being fed food that they shouldn’t have by some other family member, having to leave early… the list goes on and on. Children can often struggle with these situations as it is but when they have autism, it can sometimes seem downright unbearable. Even, avoidable… as in, just not doing Thanksgiving with family anymore.

Now, this is going to seem/feel dark but honestly… this needs to be said.

You could have had a miscarriage. Your child could have been born with cancer, half a heart or some other death sentence right from the start. Your child could have died from SIDS. Your child could have been killed in a car accident or lost at the hospital or contracted a deadly disease somehow, like whooping cough.

Listen, this is not something to think about at Thanksgiving but then again, maybe it is. Because you need to stop hating that your child has autism at Thanksgiving. You need to stop looking at the struggles and frustrations as such a terrible thing and start being thankful for what you have.

You have a child where so many others don’t anymore. Many people, right now, are trying to find reasons to be thankful when it feels like their whole world has been destroyed because their baby was taken from them.

Be thankful for the meltdowns, for the strange diet, for the late nights, for the costly therapy sessions… be thankful… for your child.

Would life be better without those struggles? Certainly. I know many people wish more than anything that their child didn’t have autism but right now… there are people who simply wish they had their child, period.

Be thankful for what you have because there are people who wish they had the same.

A big family turkey dinner might not happen as planned but it will happen. Be thankful for that.

For today, even if just today, but hopefully for always, be thankful for the struggles.

Happy Thanksgiving.

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Countering snoring in children with Autism

It is not uncommon for toddlers and kids to experience trouble in enjoying an uninterrupted night’s sleep. Discomfort with the darkness, snoring, fear of dreams, and even the habits of sleep walking are deemed pretty routine affairs with children. However, if a child has had a history of autism spectrum disorder (ASD), any instances of troubled sleeping should never be ignored. These problems could well be taken as a measure of the ravages of ASD caused in the body. More importantly, by being conscious of the need to identify such uncommon sleep habits in children is the first step towards alleviating them, as it is certainly possible to do so, with just a few easy to understand and implement behavior strategies. Here, we try to understand the links between autism and sleeping troubles such as snoring, and also try to tell you more about the simple remedies for such situations.

Immobilier

Why children suffering from Autism are more prone to develop the habit of snoring?

There’s enough medical literature and research documentation to establish that children suffering from ASD are not great sleepers. Among the most common sleeping problems they exhibit are insomnia and sleep apnoea, which is primarily linked to snoring. Here are some of the causes that lead to these observations –

  • Children with ASD also suffer from problems such as throat infections, ear infections, and coughing. This leads them into sleeping with their mouths open, a natural reaction when clogged body airways necessitate more inhalation of air. This majorly leads to snoring in children diagnosed with autism.
  • Lack of communicative powers rendering children unable to tell their parents as to what they want to be able to sleep better, and unnatural emotional attachment to sleeping patterns which can get easily violated, are two lesser known yet correlated causes leading to disturbed sleep patterns, sleep apnea in general, and snoring in particular.
  • Anxiety is a serious deterrent for sleep in children being afflicted with ASD, which slowly but surely leads children into the habit of waking up a few minutes after falling asleep. This is known to worsen snoring in children.

Autism 2

Snoring solutions to bless children with uninterrupted sleep

A child losing their sleep is certainly not a great sign, and needs to be set right at the earliest, as lack of proper sleep can lead to several health complications in the child. Here are some effective snoring solutions and tips that can help children sleep better.

  • Among the simplest anti-snoring aids is an elevated neck position for the child. Such a position prevents the tongue from falling back in the mouth, and hence prevents snoring.
  • Give a warm bath to the child before putting it off to sleep, so that the airways in the nostrils and throat get cleared up and snoring can be avoided.
  • Consider using anti-snoring devices such as masks and mouthguards, as there are several manufacturers that make child-safe anti-snoring devices.
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Over protective parents, you need to stop doing this

I’ve witnessed this in person, in social media and since starting my Autcraft server, I see it far too often. It’s a bit tough to explain exactly what “it” is but here it goes. I’m going to say “you” a lot. Don’t take it personally if it’s not how you are, I’m just being rhetorical.

Public Shaming

So many times, way too often, I see a parent upset that their child got in trouble on the server or at school or in social groups and their first reaction is to make a public spectacle of it. It’s a “screaming from the mountain tops” situation that requires calling out the people that punished their child for the evil organization that they must be. There are no questions, no information shared… just a call for blood.

I can not stress this enough but you just can not do this. I mean, yes, there are times you may be right and that organization needs to be exposed but most of the time, the majority of the time I’d wager, you’d probably not be so quick to take such actions if you knew all the details.

Children do get into trouble. That’s the nature of being a child. Sometimes it’s even your child. I’m sorry, but it’s true.

If you make a public spectacle of your child getting into trouble and demand details for all to see, all you are doing is shaming your child… in public. On the Autcraft server, we know that other players visit the forums, the fan pages, the twitter account… they read it all because they love the server. So when you post, saying that your child got into big trouble and you’re angry and you demand to know why, you are publicly putting your child’s bad behaviours on display for all to see and to judge and to feel strongly about.

Why do it? Well, I suppose you want everyone to see how they treated your child. Perhaps you want the public to rally around you and support you. Perhaps you just think it’s the best way to get answers. Even if any of these things happen, even if you get the anger fueled vengeance that you’re after, you have still left your child on display for the world to see. You’ve still made your child into a spectacle.

A Better Way

The Internet is an amazing tool to use when you want justice. If someone is wronged, you share your story, others will share it and it will come back to haunt the person that did wrong. It will provide the judge, jury and punishment that you seek. But in being such a judging entity, you have to choose more carefully what you are giving it to judge.

Your child may have done something very very wrong and now you are basically asking the Internet to judge them for it. Or your child may have done nothing wrong but is still going to become the focal point of a very ugly and nasty bit of drama for all to see and people will not remember it fondly, no matter who is right or wrong. They don’t even remember what it was about but they’ll remember your child.

There’s 2 things that I suggest you keep in mind.

  1. If you are angry, step away from the keyboard, walk away, take a deep breath. You have to gather your thoughts and feelings before you do something you may regret. Yes, those emotions may empower you to say the things you need to say that you wouldn’t say otherwise but it will also impair your judgment. You will make things public that shouldn’t be public, you will accuse people of terrible things that they may not have done. You will make assumptions that likely have a very different and simple explanation.
  2. Seek the details in private before you take anything public. If you need to know what your child did, ask in private and then take it public if still necessary after, but even then, I’d still advise against that. But if you absolutely must, if you do have a justifiable reason and people need to know about it, at least have the facts first. Don’t ask for those facts in public because you may not like what you just invited everyone to know. I am almost certain that your child wouldn’t either.

Your Child’s Drama is Not Your Drama to Share

There is not always a way to talk to someone in private but most of the time there is. You owe it to your child to seek those out before you make them a public display. Put yourself in your child’s shoes or better yet, think back to when you were a child. If you did something wrong, would you really want your parents to go on local television demanding details only to have a list of all the bad things you did show up on the 6 o’clock news?

I do get it, I’m over protective as well but in my duty to protect my children, I have to protect them from myself as well. I share openly about them here on my blog but I am very careful to never bring them shame. If they do wrong, they are spoken to, other parties that are involved are spoken to and we all learn and move forward. There is never ever any reason that I need for you or anyone else in the public to know about it.

Fight that urge to hurt the people that you think hurt your child. Your child might be innocent, they might not be, but making them a public drama story is not the way to go about getting to the bottom of anything. Share your drama all you want but don’t make your child’s drama public.

If you don’t want your child to be judged or bullied, stop giving people a reason to. You are their advocate and their protector. Stop making their drama public.

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The biggest thing to take away from Jerry Seinfeld’s autism statement

Jerry SeinfeldIn a statement that made headlines and got mixed reviews amongst the autism community, Jerry Seinfeld revealed during an interview “I think, on a very drawn-out scale, I think I’m on the spectrum.

I would like to explain why the reviews have been mixed before getting to what I feel is the biggest thing that we should all take away from this but I wouldn’t blame if you wanted to skip straight to it either.

Pros

Many people in the autism community see this as a purely positive thing. Jerry Seinfeld is well loved and regarded as a very successful comedian. In many ways this reinforces their notion that ‘if he can do it, anyone can’ or in other words, there’s still hope for themselves or their children.

Also, a lot of people like to use “you’re so autistic” or some variation as a form of insult but these same people love Seinfeld. So, if a comedian they really like turns out to be autistic himself, is it still the insult that they thought it was?

For most though, it simply is a +1 in the awareness and even acceptance column. Along with others such as Darryl Hannah, Dan Aykroyd, Susan Boyle and others, autism is getting the sort of attention that people only dreamed of as little as 10 years ago. I think most people would agree that to this day, no one really has any clue what autism even is unless it directly affects them such as having an autistic family member or having autism themself.

For a long time, the only time autism seemed to be in the media was when it depicted children hurting themselves or having a meltdown or being institutionalized. This was the public perception, or at least, the way it seemed to be for a lot of people. So the more successful people can come forth and say that they struggled but became successful anyway, the more the public will begin to see that it’s not always something to be ashamed of or afraid of.

Cons

When Jerry Seinfeld made the statement that he felt that it wasn’t a dysfunction but rather a different mind set, many people felt that he outright dismissed and mislead the pubic as to just how much of a dysfunction autism can really be. Even though the news stories aren’t all about children hurting themselves anymore, that is still very much the reality for many people and people like Jerry Seinfeld coming forward after being successful and making people think it’s glorious will not only diminish their struggles but make people forget about them.

Making a self diagnosis like he did takes away from the reality of the whole diagnosis. Children that need constant medication, supervision and support require a lot of funding and awareness but to have public figures just going around and self diagnosing themselves gives everyone the idea that they can do the same. Now anyone that’s a little shy or has trouble making friends will just go diagnosing themselves and spreading all kinds of inaccurate or even outright false information. There are a lot of disorders and disabilities and doctors spend many many years learning about them all to ensure that they don’t make any mistakes and yet they still do so for someone to just up and say they have a disorder is a slap in the face to those doctors and is also a very big leap of faith since in all likelihood, they could be right that they have a disorder but entirely wrong on which disorder they have… or they may have no disorder at all and are just introverted or something.

The Takeaway

The one thing that you really have to take from all of this is that he’s not talking about you. He’s not talking about you, your child, your situation, your experience or anything else to do with you… he’s talking about Jerry Seinfeld and only Jerry Seinfeld.

When he speaks about his mind set, his struggles and how he doesn’t view what he’s gone through as a dysfunction, he describes his experience. He describes what autism is as it relates to Jerry Seinfeld.

In our ever so strong desires to have our own story told, have we gone so far as to deny others their story if it doesn’t represent or even contradicts our own? In turn, shouldn’t our own stories then be denied as well when someone else finds that it doesn’t mesh with their own? How can any of us ever feel safe to share our stories and experiences and raise awareness in our own way if there is always going to be those out there that hate us for not representing them?

Speaking of feeling safe, is it any wonder that people are afraid to get a diagnosis? or speak out about autism? or say anything!?!? Is this really how we treat someone when they come to feel that they themselves are on the spectrum?? Is this what you want for your children?? To be attacked by half of the community that they suddenly find themselves to be a part of only because they are sharing who they are?? To be scared into silence?

For all we know, he could be wrong. He’s not a professional in health nor does it seem that he’s consulted with one, but of all the people that I’ve known to self diagnose themselves, not a single one of them did it because it would be funny or a cool thing to do. They do it after a lot of self reflection, a lot of deep soul searching and a lot of forethought. It’s not an easy thing to come to terms with and an even more difficult thing to share with others.

But isn’t a self diagnosis pretty much how the majority of official diagnoses ever come to be? That is, don’t we need to see the signs in our children or in ourselves in order to seek out an assessment? Yes, there are times when someone suggests it or our doctor catches it but the majority of people I talk to, people make that determination on their own, even if not entirely sure. It’s why we raise awareness! So that people can do that.

If my own son goes on to do well and become famous enough, I’d hate for him to be afraid to mention that he has autism because of how polarizing or hateful people within the autism community can apparently be. For one, I’d like to think that he’d be strong enough to deal with that anyway but more so, I’d hope that the autism community could move beyond things like this and accept that a person can speak of themselves and their experiences without judgement or attacks.

No, Jerry Seinfeld didn’t diminish autism or the public’s perception of it… he shared something personal, about him. That’s totally within his rights to do.

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