5 Things I wish I knew before Autism

Tamara Wood is a proud mother of two amazing boys. After searching for a solution for her son Alex, who is affected by Autism, Tamara found the AngelSense solution for her family. It gave her a great deal of peace of mind, and her enthusiasm for the company only increased – she joined the AngelSense team as a customer care specialist.

tamara's familyI am the mother to two wonderful little boys, one who has autism and one who is “normal” (whatever that is!). There are many things we didn’t know before we became parents, and even less when you hear a word like “autism.” There are somethings I wish I had known before my son was born, and I wish I could share them with every parent out there.

 

Insurance

Before autism, the most I cared to know – or needed to know – about insurance was copay, deductible, out-of-pocket, yada, yada, yada… I wish I had known all of the loopholes and red tape that can make your head spin concerning HPCPS and ICD-9 codes and all of those neat little “tricks” that you should really do to make your life easier. Like keeping track of who I spoke to and that gosh darnit they did say that! – this is more than just a good idea, it is crucial people! Or how a medical/insurance journal with a history of therapies, doctors, important health info, and bills is beyond just being organized; it is a savior of brain cells at those times when my brain hurts on marathon phone call days.

Acronyms

I wish I had known that I was going to be learning another language for school/therapy. ARD, AU, IEP, BIP, AT, ESY, LRE, OT, PT, ST, etc., just to name a few. Now these acronyms have been a part of our lives for almost 7 years and just slip off the tongue, but boy, can those ARD meetings be confusing when they are literally speaking a different language.

The AUsomeness of the autism community

I wish I had known going in that I was going to be a part of a very special group of families that are so free with advice, support, resources, and all around laughs to help you through. I can’t express how much of a release it is to talk to others that understand and can find the humor in our daily lives. Swapping public meltdown stories, how talented my son is at finger painting his whole room at 3am (that smell is not funny at 3am), and just being able to relax with others who “get it” is very important.

Romance

I wish I had known that the definition of romance was going to change. Finding an experienced sitter, having money, having time, and honestly just having the energy are just some of the factors. Romance in our house is my husband doing the dishes for me, helping each other clean up the 3am finger painting, being an eternal tag team for when the other has just had too much, and dates that are only retreating to another room to sit and watch TV because we just don’t have the energy to do much else. And finding that this can be enough.

The Box

I wish that I had known that thinking outside of the box was going to actually be the only way of thinking from then on. Our life is the equivalent of having a beautiful boy with the curiosity and development of a toddler and the physical ability of a 10 year old – for the past 8 years. This makes thinking about safety (and sanity) a very big part of our lives. Going out to eat, planning a date, going to the store, holidays, and even just rearranging the furniture require quite a bit of resourcefulness and thinking outside the box.

It has been a rough road at times, but I can’t imagine our lives any differently and I wouldn’t trade our kids for anything – we love them just the way they are. The autism community has brought me something else – recently, I have been blessed to be able to work from home in order to take care of him. And I am doubly blessed to be able to work for AngelSense, a company that helps us keep him safe by knowing where he is at all times and being able to listen to him throughout his day.

Founded by parents of special needs children, and employing other special needs’ parents, AngelSense provides so much peace of mind in so many ways. With the Guardian GPS device I can monitor my son through out his day, when he is out of our sight. I can check on him from my smartphone or the computer, and make sure he’s where I want him to be! Working for a company that understands me and my family has been just another example of the wonderful way we all support each other. I know so much now and hope that sharing my experience helps someone who might feel alone today.

Visit AngelSense at: https://www.angelsense.com.

 

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If I could could suggest just one New Years resolution, it would be this

resolutionsI know this is a bit late but there are still some people out there that are unsure of what they should “resolve” to do for the new year.

Well, Autcraft, my Minecraft server for children with autism and their families has been receiving some media coverage in recent weeks and there was one question that I got from everyone that really stands out as very important and thus, would make for the perfect New Years resolution: “What is it about Autcraft that is helping these kids to make friends, to talk to other people, to learn to read/write faster and to make such great progress in such little time?

The answer? Be less afraid.

On the server, we remove the risk of bullying but it’s more than that. The children there all have a lot of similarities and know what it feels like to be judged or bullied or hurt, so they don’t do that to each other. They welcome each other’s obsessions and ideas and if they do disagree, they do it in a way so as to not upset each other. This allows them all to feel unafraid to express themselves and even make mistakes.

I’d like to break this down into a New Years Resolution sort of way to look at it.

Be less afraid to be embarrassed

One of the biggest fears many of us have is the fear of embarrassment. We don’t want anyone to laugh at us or to think we’re stupid and so we either take the safest path or just do nothing at all in order to avoid that risk. However, when you watch some of the greatest comedians ever, their greatest asset is… embarrassment! They get as silly as they need to be in order to entertain us and to laugh… not to laugh at them, but to laugh because they want us to laugh.

So how do you be less afraid to be embarrassed? You own it. If you slip and fall or make a mistake, you laugh first and then you tell others about the crazy thing you did. When you own it, it’s your joke and it’s your tool to do with as you wish. How can anyone ever make fun of you when you own the tool they’re trying to use? That’s what the comedians did. They took something that they should have been afraid of and they took ownership of it. Once you do that, you’ll be less afraid to do it in the future.

Be less afraid to be yourself

This is the hard one because everyone likely wants you to do what they consider normal or what society expects of you. Now granted, if killing everyone is how you think you are, then this doesn’t apply to you. But thinking differently from the rest of the world is how great inventors change the world or how scientists make sense of the universe. If you stick to the previous point (less afraid to be embarrassed) than this should actually be an easy one for you. Being yourself, as wacky or silly or quiet or what ever you want to be might not be huge world changers but it will change your world. It will change for the absolute better.

When you be yourself and others are able to be themselves, that’s when you truly do find people that you have a lot in common with. That’s when you start making real friends because now you’re being open and honest with someone. Many friendships that I see are based on lies or huge compromises and even sometimes, I wouldn’t really call them friends. But if you are yourself and your friend is too and you like each other, there’s no greater friendship than that because you are both being honest with each other and yourselves.

Be less afraid to hurt yourself

I admit it, I really don’t want to hurt myself. Pain, it’s no fun. But when I think about the athletes at the Olympics or sports professionals, I know that they’ve done their fair share of hurting. In fact, when they say that they’ve been working at their sport every day of their life to get better, that’s not true. Because you can be absolutely certain that every single one of them has had some down time due to an injury.

They aren’t afraid to hurt themselves because they know that it’s one of those things that has to happen if they’re going to be the best some day. No one gets through life without some scratches and scrapes so you might as well stop trying to avoid it. Luckily though, our wondrous and amazing bodies are remarkably capable of healing. So unless you really do some damage, you’ll likely be back up and at it pretty quick.

Yes, no one wants to be hurt and that’s why we do everything in our power to ensure that doesn’t happen but it also should not be a reason to stop us. Take the safety precautions, think of everything that could go wrong and take measure to prevent them… and then do it. Yeah, you still might get hurt but then again, you still might end up being the best some day.

Be less afraid to hurt

No, this isn’t the same as the last point. Pain and hurting are often two different things. For example, many people, when they hurt themselves, they feel both pain and hurt… the pain from injury but also the hurt from the failure.

Hurt comes in many forms such as disappointment, depression, anger and then there are others such as when you lose a friend. But if we’re so afraid of these things that we avoid them then that means that we avoid doing things that could disappoint us or depress us or anger us… it means avoiding friendships. There’s a lot that we really should not be missing out on and certainly not because they might hurt.

Like all things, it’s going to happen but also, they’re going to require practice. No one knows how to be a great friend at first and no one knows how to do everything so perfect that they never get angry or disappoint themselves. You have to work at all these things and push through the hurt before you can conquer these things. And chances are, if you want them that bad, they’re worth it.

Also, the biggest difference between hurting yourself and feeling hurt is that one, anyone can do to you and the other you can only do to yourself.

Be less afraid to tell someone that you appreciate them

So often I am reminded that a job well done proceeds quietly, it’s only when everyone wants to contact you that you realize something is wrong.

What we really need more of in this world is for people to simply say, “you did a great job!” But this is something that many of us fear. For what ever reason, between these two emotions, it’s far easier to be angry with someone directly to their face than to be proud of them and tell them they did well. I suspect it has something to do with those awkward feelings from back in high school where, as teens, we were afraid to tell the other kid that we liked them. Something from that sticks with us and, as adults, we become afraid to tell someone we like what they did. Or maybe we just feel it’s unimportant because they’re doing their job.. what more do they need?

I don’t really know why it is but I see people actually shying away and saying no when others tell them that they should commend someone for a job well done. They are quite literally afraid to do it even though they would love for someone else to do that for them when ever they do a good job themselves.

All the other points are for you but for this one, do it for others. Be less afraid to give someone a pat on the back if they deserve it. It could really change that person’s who day… maybe even life. That’s pretty cool, right?

Be less afraid to take risks

Yes, this last one is rather cliche by now. We’ve all heard it. But the truth is that life really is short, only we don’t tend to realize that until later in life when we look back with regret. We think of all the times we didn’t do that we really wanted to do because we were afraid. It’s at this point we lower our eyes to the ground and realize that it was foolish to be so afraid. It was foolish to miss that opportunity for nothing because by the time we recognize all this… it’s too late.

We don’t have time machines and no one will truly be able to describe this feeling to you accurately while you’re young but there has to be some way to convince yourself that if you don’t take that risk now to do what you really want to do, one day it’ll be too late. You’ll have that regret to live with.

While that fear feels all too real right now, while right now, it paralyzes you and controls you… one day a much older you will think that it was nothing. You froze, for nothing. And you missed your chance, for nothing. And you’ll never get it back.

Don’t let fear rob you of moments. Those moments add up to your life. If you miss too many of them…

Like the children on that Minecraft server, be less afraid and you too will be amazed at the progress that comes from it.

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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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