Tag Archives | Special Needs

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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Destroying the term “special needs”

uwe-quote-jpg“Special needs children” is the all encompassing term used to describe all children that have a disability or disorder. What it implies is, and this is where people start to see “special needs” people as a burden, is that special accommodations are needed just to make life easier for “special needs” people.

An example of this is when a library spends a bunch of money to put in a ramp along side their entrance stairs so that a person in a wheelchair can get in. An architect, disability specialist/advocate, contractor, construction team and a whole host of other people and costs are all put towards getting in this ramp to help out a few out of the thousands of people that visit that library each day.

As more and more libraries get on board with his “affirmative action”, we start to see more and more libraries with this “convenient” ramp at it’s entrance and we smile to ourselves as society is finally starting to do something for these poor “special needs” people that need that little bit extra.


Let’s flip this around and look at it from another point of view.

Imagine a world where no one was considered special but instead, as people. And as the first library starts to go up, the designers and planners say to each other “well, we have blind people so there’ll be braille, we have people in wheelchairs so there’ll be ramps with stairs over here, we have people that require animal assistance so we’ll make sure the floors are safe for them…” and on and on. The second library follows suit, then the next and then the next.

No one thinks twice about it.

Then one day you’re travelling to a place you’ve never been before and you come across a library that has no ramps or braille or any of that stuff. How shocking would that be?!?! What an abomination that would be to every ounce of common sense that you were raised with in believing that libraries were just made for everyone… not to exclude anyone.

No one would question this library for it’s lack of accommodation… they would judge it, quite harshly, for it’s shutting people out. Not “special needs” people, but people. Just… people. 

If only that could be how it is, right?

The library example is just one example out of billions but in the end, what it comes down to is that no one has “special needs”, we just have needs.

I have needs, you have needs, we all have needs. We all want access to the same things, we all want to read and watch and do the same things. Some people just do it differently than others but that doesn’t make it a special need. It makes it the same need that someone somewhere hadn’t thought about putting into their designs or, worse, just left out of their designs because they either didn’t care or didn’t want to spend that little extra on “accommodation.”

We can’t go back and tell those libraries to get it right the first time, although it really would be great, but we can work to fix these things so that future generations don’t have to think of anyone as needing something special done to give them special help to their special need.

One day, one generation of people will find it odd to have a movie without a subtitle option, or a library without ramp, or a debate/discussion without transcripts or sign language accompaniment, or a bus without wheelchair access or a building that doesn’t allow guide dogs or….  well, I could go on. One day, instead of finding it pleasantly surprising to find places that have all these things, people will find it disgustingly surprising to find a place that doesn’t.

That probably won’t be in my lifetime but it’s a good dream to have. I just wish everyone shared it.

Get it right in the first place and there’ll be no more “special needs”… only similar needs that people achieve differently.

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To the non-special needs parents that feel they need to give me advice

If you have a child, or children, and none of them have special needs, but you still feel you have all the answers and just have to give me advice on how to raise my children that do have special needs, I want you to consider this:

You know how annoying and frustrating it is when non-parents think they know everything and tell you how to raise your children when the reality is, they really don’t have a clue?

Yeah, that’s how you are to me right now.


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Parenting a child with autism is hard, being chastised for saying so is harder

Parenting is hardI’ve been an autism blogger for a while now and as such, I’ve also been an autism blog reader. I love to read the experiences and lessons from other parents, other autistics (I was diagnosed with Aspergers myself) and even from others such as care givers and “experts”. It’s all information for the learning.

One aspect of reading those other blogs is that it hurts to see a parent that just isn’t coping well. For what ever reason, they’re reaching or have reached their breaking point. It’s not that their child is bad, or impossible to handle, it’s just that the struggles have become to heavy to hold any longer. The “little things” have added up and the parent is reaching their nervous breakdown point.

I know that they’re reaching that point because they write about it. Which is good! It really is. Because that release combined with what should be support from other parents and people in the community may just be what holds off that nervous breakdown for one more day or week or month. Getting it off their chest or hearing from others, it’s a big part of why we write. Not just to share but also to reach out for help sometimes, or just to get something out there when there’s no one else close by to listen.

Most often times, that is exactly what happens. People come in to support them. But it’s not always like that.

Sometimes that parent comes under attack for making public the struggles they have with their child. Sometimes they’re made to feel much worse.

Here’s why: When you write, as a parent of a child with autism, you’re writing about autism but you’re also writing about your child. Publicly.

That means that all of the things you say about your child is out there, for the world to read, forever. Including your child when they get older. Including your child’s friends and peers as they get older. And when they do, will they see themselves as a burden on you? Will they think that you just always saw them as some broken kid that made your life hell?

These are all fair points and in many cases, parents choose to write anonymously, either never using names or by using fake names. Some parents just try their best to never “air their dirty laundry” and some parents are simply afraid to put themselves out there because they know that the attacks will be coming if they do.

The ironic thing is though, that when I visit parenting blogs, the ones that are just about parenting with no special needs people in the family at all, there is all kinds of complaining going on. Late nights, early mornings, long car trips, horrendous trips in a plane, toilet training, troubles eating, weeks of being sick and on and on and on.

And when I think back, the very first memories I have after telling people that I’ll be having my first child is of family and friends that are already parents telling me to kiss my sleep goodbye and that I’m going to lose my hair (faster anyway) and the grey hairs will be coming in full force now and on and on and on… again.

Of course, those people had no idea just how right they really were going to be since they didn’t have a child with autism… but I digress.

The thing is, parenting is hard. And parents need help sometimes, even if it’s just to vent or to tell other parents how hard has been or it’s going to be. That’s why there are parenting support groups! And they don’t have children with special needs!

Sometimes it seems as though it’s ok to whine, cry and complain and even make light of how incredibly difficult parenting is but if the child has any special needs, then it’s no longer ok to ever say anything about the struggles ever. That you’re going to damage your child for life by talking about how hard it is to be their parent.

I am not saying that it’s ok to make your child out to be some monster on the internet for all people to see for all time. You do need to choose your words carefully, even when emotionally driven, to ensure that it’s the situation that frustrates you, not the child. To help people understand that there is no love lost and you do not blame your child but that the lack of sleep or the frustration in failures is driving you to reach out for support… it’s not your child to blame.

Remember that what you say can be read for many years and have effects later on in life that you can’t foresee now.

But at the same time, if you’re reading something from someone and they’ve reached the edge of the cliff, a push is not what they need. They need you to pull them back up.

If you see a parent turning their child into “the bad guy” for all to see, that’s not ok and they need to be educated on the ramifications of their words. But educate them, don’t attack them.

If that person’s child is whom you are trying to protect, will pushing their mom or dad over the cliff really help them? Will making them too afraid to ever reach out again help that child? Will pushing a butt load of guilt on them for ruining their child’s future in one little blog post really be the best way to help that child out right now?

Parenting is hard. Period. Autism makes it ever so much harder. Even when the child is doing amazing, parenting is still hard.

Try not to make it harder, even if the good intentions are there.

Educate, not attack.

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Spread the word to end the word – a suggested suitable replacement

Spread the word to end the word

Today is, once again, the day to end the word. The “r-word”.  Really though, it’s every day, isn’t it? They just make official days to get us bloggers all talking about it at the same time. Which is brilliant. But really, we all need to be talking about it any time the word comes up or when ever the opportunity arises. Not to preach to our friends, family or even strangers about how we want them to talk but to suggest that there may be a better way.

That’s how I look at this, as an opportunity. And since I’ve been at this for a while, I think I know my audience (that’s you) pretty well. Which means that I know you’ve already heard about this and more so, most likely already removed that word from your vocabulary. Even if not, for what ever reason, you’ve at least heard of it and made your decision. (although I do hope you’ll reconsider it someday)

So I won’t sit here and preach to you. You know how it hurts me since I have a child with special needs. You know how it hurts others from those in care facilities to those who simply learn at a slower rate than “normal.” You know all the things I could possibly say to you to convince you to stop using that word.

Instead, I would ask that you seize your opportunities. As awkward as they may be or as shy as you may be or as uncomfortable as it may become, speak up.

Whether it’s a family member, an old friend or some person on the bus, speak up. Be nice, don’t be preachy, and just gently suggest that you and many people find that word offensive no matter how it’s used or in which way it’s intended. Suggest that, even though you valuable their right to say and do as they please, you just request that they understand that it is offensive to many and to take the time to consider all that this implies.

There is one word that I often suggest as a replacement, not to be used in place of, but to be thought of instead. An r-word to replace an r-word.

That word is respect.

When a person is about to or has already used the r-word, think about the other r-word, respect. Respect those that find it offensive. Respect those that are having to hear it. Respect those that are indirectly implied by your using it. Respect yourself enough to have a more evolved vocabulary and sense of community.

You don’t have to respect an individual, in the way in which you’d respect a peer, but to respect the ideal behind those are trying to do something right. For the good of the children, the children’s parents and everyone around the world.

So no, I’m not going to ask that you not use the word. All I ask is that you take today and any day to speak up when someone does. Be respectful in suggesting that they do the same.

And in the mean time, read and share because the more that we get the word out to the world, the faster we can get the word out of the world.


End The Word

Sticks and Stones

What’s in a word?

Being Retarded


If you have written a post or found a post about this, please share and I’ll add it to the list above.

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