Tag Archives | family

Autism and Thanksgiving – Be thankful for the struggles

By on November 27, 2014 in Autism
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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To the autism moms for Mother’s Day 2014

By on May 11, 2014 in Autism

When the “experts” say “some children just talk later than others”, you are the one that insists there’s more and gets it right.

When other people see something “strange” in your child, you see something special.

When the “know it all” posse questions your every decision, you stand strong.

When your child falls down, you teach them how to get back up.

When your child struggles to learn, you find new ways to teach.

When others call it a temper tantrum, you know your child is actually in pain.

When others say your child needs a firm hand, you offer a calm voice.

When bullies try to knock your child down, you are the one to lift them up.

When depression tries to steal your child’s self esteem, you reinforce it.

When the school tries to force your child into a standard mold, you shatter that mold.

When your child’s heart is broken, you are the glue that puts it back together.

When your child moves out to be on their own, you are the one that prepares them.

When your child has a set back, you get behind them and push them forward.

When your child needs you, you drop everything to be there.

When others see the rain, you see the rainbow.

To the single fathers, the legal guardians, the kind souls that see all children equally and of course, to the mothers… Happy Mother’s Day.

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The yin and yang of parenting on the spectrum

By on February 28, 2013 in Autism, Parenting

We’re coming up on the one-month mark for a new ADHD medication for our seven-year-old son, who’s also on the autism spectrum. It’s always tricky to be objective about tracing results back to causes, but so far, the results are encouraging.

For the first time, he’s asking open-ended questions. Questions that indicate a curiosity about how things work, from a car engine to the mechanism behind a video exhibit at a museum. He’s been able to curtail some of his impulses – like doing the puzzle he just opened– when I announced it was bedtime.

The tattoo I got for my son and daughter works for my husband and me, too.

The tattoo I got for my son and daughter works for my husband and me, too.

It’s gratifying to see, not to mention a relief. After a bad experience with a different ADHD med last summer, the absence of negative

consequences is a positive in and of itself.

For me, though, it also provokes guilt. Because the only reason our son is on this medication is that his dad pushed for it.

Feeling burned by the first med, I resisted our doctor’s suggestions to try this one for almost six months. My husband didn’t oppose me, but gradually, after receiving input from school, he began his own low-key lobby. Finally, reluctantly, I agreed to try it.

And so far, it appears he was right and I was wrong. Thus the guilt. Did I deny our son six months of growth and progress because of my supermom proclivities? I’ll fix it/handle it/solve it myself. I don’t need any help from some drug.

This isn’t the first time my husband has been the ballast in parenting decisions. It goes way back to infancy, when we started part-time daycare. I felt like I should handle all the caregiving myself. That’s what a good mother does, after all. Even though I hated it and was going stir crazy at home all the time.  Mike took the reasonable approach. Let’s try it. It doesn’t have to be permanent.

Seven years, two kids and one sane mother on, it was by far the best decision for our family. Yet I still don’t know if I could have made that decision myself. So on this, my first post on Autism from a Father’s Point of View, I want to ask: What is it about dads? Is there something in the Y chromosome?  Is our dynamic reflected in your parental roles, too? And is it the balance that matters most, no matter who provides the yin and yang?

– Cari Noga is a writer in Michigan and mother to a son on the spectrum and a neurotypical daughter. You can read her blog here. In April she will publish Sparrow Migrations, a novel about a 12-year-old boy with autism who becomes obsessed with birds after witnessing the “Miracle on the Hudson.”

 

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Making the best of it

By on November 23, 2012 in Autism, Parenting

For a long time in my life, I was very depressed. I wasn’t going anywhere, doing anything, I had no goals and worst of all, I felt that my life simply had no chance of ever getting better than what it was at the time.

Then I got married.

Strange huh? To go from depressed to married. Well, there was a lot that happened in between but those stories aren’t what’s important right now.

What is important is the vow I made. You know, the vows we all make through marriage… “good times and in bad, in sickness and in health”… I took those vows seriously. More so than that, I paraphrased them and made them my own new life motto: “Make the best of it.”

When my son was diagnosed with autism, I made the best of it. When my wife was pregnant with our second child and had to spend 6 months of it on bed rest, I made the best of it. When my wife was diagnosed with fibromyalgia and could barely get off the couch, I made the best of it.

People told me I would crack, have a nervous breakdown or worse, leave… I didn’t. When people asked how I handle the stress, I told them that I just take one day at a time and I, of course, make the best of it.

Now those days are behind me and my wife is gone. Our children are being split between us 50/50 where I get them for one week and she gets them for one week.

I’ve been with my kids almost every day since their birth and even more so in the last 5 months. With their mother working extra hard, my boys and I were glued together (other than school) every single day.

And after 5 months of that, they’re gone for the week. And this house feels ever so quiet now. No wife. No kids. Not even the dog.

So what do I do?

shrimp

Shrimp = Great snack food!

Well, I’ve been eating some foods that I haven’t had in years, due to the wife’s healthy diet, my son’s gluten free diet and our lack of budget. I’ve been watching movies I have been dying to see. I’ve been playing video games that I haven’t touched in almost a year. I’ve been reading and learning new skills in my field of expertise to better myself.

I posted some pictures on Facebook to which one person replied “you’re not supposed to be enjoying this! lol”

And I got to thinking.

She’s right. I’m not supposed to be enjoying this. What I’m supposed to do is feel alone and quiet and maybe even sad. After all, I do miss my boys tremendously right now. My wife too, but more so my boys since we were together so often for the last 5 months… just the 3 of us.

But why? Why do to that to myself just because I’m “supposed to?”

I thought back to the bed rest, the diagnosis, the struggles with money, the decisions and sacrifices we’ve made and I thought to myself… no, I’m not going to do what I’m supposed to do.

I’m going to make the best of it.

I have the house to myself, I’m going to keep myself busy in the best way I know how and when the week is up, my boys will come back to me. And again, during that short week that I get them… I’m going to make the best of it again.

happy cat

My cat – making the best of an empty house

The way I see it is, when times get hard or life throws mud in your face, you have 2 choices:
1. Do what you’re supposed to do and let it get you down.
2. Make the best of it.

It’s kind of like that whole “when life gives you lemons…” cliché, except, I’m going to make myself a steak and watch a good movie with my lemonade.

Because life is to short to do what you’re supposed to.

Instead, make the best of it.

One day you’ll look back on your life and be glad that you did.

 

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The life I once had

By on June 26, 2012 in Autism

It’s not something I talk about very much. It’s really quite boring. But even more than that, it’s really quite depressing. It’s negative. It’s not the me that most of you have come to know now, that is if you have been reading the things I write before this one. If this is the first of mine that you read, I am sorry. But please do stick it out because there is a point to my telling you this.

loneliness10 years ago

When I was 26, I lived in one of, if not the, most beautiful city on Earth, Vancouver BC. I really loved it there. I had an apartment on Beach Ave, over looking the ocean. My living room wall was glass from top to ceiling. Just me, my computer and the most beautiful sight you’ve ever seen.

And I was miserable.

I didn’t know it back then but I have Asperger’s. Back then, I was just… me. Miserable, depressed and lonely. Which is funny to think about because I did have friends and family that lived close by. But I was so very lonely. I would work at my computer, making websites for people. I made my own hours, I made my own money. I had no boss. I had no place to be.

My schedule would shift because every single day I’d go to bed one or two hours later than I had the day before. I say day, not night, because when you continue this process for several years, you go from staying up all day to staying up all night and back again.

I had accomplished my goals. I worked for myself. I could afford a great apartment. I did as I pleased.

I wanted to kill myself.

My darkest day

It never really occurred to me just what it was I was telling her or how much it must have been hurting her or just how stupid it was of me to be saying it but, without a doubt, the worst it had ever gotten was when I told my mother, while bawling my eyes out, that I was so very sorry because she would never get to be a grandmother.

Me, being her only child, feeling completely defeated and worthless in life, had fully accepted that no one would ever love me and that I most certainly would never get to a point in life where I would ever have a family.

I couldn’t be the person that people wanted me to be. I felt a total fraud every time I walked out the door. I told witty stories, quick one liners and would often be the “life of the party” with those that knew me but it was never right. It was never me.

I loved who I was and what I had accomplished but hated myself all the same.

I even sought out help in the form of a psychiatrist but it proved to be pointless. I don’t know if it’s because of my Asperger’s or just watching far too many drama movies and television shows but it was as if I could see each line he said before he said it. I knew the points he would be trying to make, I knew the directions he would try to take. And each and every time I would dismiss and ignore. It never pertained to me. It never pertained to my problem. It was always stuff that made sense for other people but not for me.

And so I resigned myself to a life of solitude. I told my mother that our family line would end with me. Her disappointment.

What a thing to tell a mother.

10 years later

So here I am now, 36 years old and feeling like my past was only a moment ago and a whole other life time ago at the same time.

Today I have a wife, two little boys, a dog and a cat. I have no money, no free time and a very strict schedule. I live in a crappy apartment with no view to anything in a town that I don’t want to be in.

I’m the happiest I’ve ever been.

So what happened? Well, to be honest, it’s not really the details that matter. What matters is that I was there for them to happen.

My wife, as it turned out, was one of my oldest friends. I had known her for a very long time. One day, at the right moment, in the right place, something happened. And here we are.

Thing is, if I had had my way, at that time, I’d have still been at my computer, in my Beach Ave apartment, being miserable. That moment would have never happened.

A moment in time was all it took. I didn’t know when or where, I was most certainly convinced it would never exist, but it did. And now my life is not just different from what it was, it’s nearly the opposite.

I have no friends now and my family is hundreds of miles away but I never feel lonely. My wife and kids, they were what I was missing. They have filled that hole in my heart.

I have no money or time anymore but at the same time, my kids always have food, the latest games and toys, clothing on their backs. You can have all the time and money in the world but they have no value at all unless you have a purpose for them.

Your future you is waiting for you

It sounds corny and I’m not making you a guarantee but if you believe it and if you work for it and you make the effort to simply be there, that moment can happen to anyone.

Many autistics fear their own future. Will it be more of the same? Bullying in school? Bouncing around jobs if there are any jobs? Feelings of anxiety and loneliness?

Parents also have these fears for their children. Especially if their children are non-verbal or particularly challenged, such as having other associated conditions like blindness or epilepsy.

I am not trying to throw positivity down your throat. I’m not Anthony Robbins. But I can tell you how I see things based on my own experiences.

If I had stayed at home, if I had moped for one more minute, if I had simply believed myself worthless at that one key moment instead of… what ever it is that I felt… I would probably still be on my own. If was I still alive at all by now.

I didn’t know it then but autism was confining me to that computer chair. It was making each outing a torturous affair. It made me disregard or even dislike the friendships I had even though I loved my friends. It made me hate myself.

At the time, I thought I was just a loser. Just the oddball out that was meant to be alone. A person that was meant to be miserable.

But I did go out. I did keep that friendship going after so many years, even though that was largely due to her, insisting on keeping in contact even when I would “forget” to reach out.

I look back now wishing I could travel in time so that I could tell myself just one thing; “Endure this. It’s going to really suck and you’re going to really hate it but endure it. Because no matter how impossible it seems, like it could never happen to you… it can. I am your future and your future is waiting for you.”

To be honest, I probably wouldn’t have listened, not even to myself. That’s how miserable I was. But that kind of hope can make all the difference.

That kind of hope is what is missing for a lot of young people today. Especially those with autism who feel like there is just no place for them in this world.

To those waiting for their moment

My son has two advantages, the way I see it. One is that he knows he has autism so he’ll know the reason for feeling how he feels. Perhaps he’ll even know the coping mechanisms to not let it get in his way. It won’t just be a random feeling of despair and loneliness. Second, he has me. And I’ll always be there to tell him that his future self is waiting for him. That he can and will be happy if he endures long enough.

But I’m not a time traveler nor am I a fortune teller. So I can’t make any promises on what the future will hold. I can only tell you what I have experienced and what I believe.

What I believe is that there is nothing that can ruin your life unless you let it. Not autism nor anything else. Granted, it can make it one hell of a whopping huge challenge but nothing can stop you from loving life and being happy.

You could argue that I was lucky, to have had that one moment that turned things around for me but that’s kind of the point I’m trying to make.

I told you that I felt lonely even amongst my friends. I told you that each outing was torturous. But I still went out. I still had friends. I still left my little ocean side apartment because if I didn’t… there never would have been a moment. I would not be here, right now, believing what I believe and sharing it with you.

Even though it was that one moment that I can pin point, looking back, that changed everything… it wasn’t in that instant that I suddenly switched from miserable to happy.

It was that moment that things turned around but it took time. A lot of time.

My point is, it wasn’t just luck. I wasn’t lucky. I was anything but lucky at that point in my life. But I was there.

You need to be there too. When every part of you tells you not to be, when every part of you tells you it won’t happen… be there anyway.

If you feel like an outsider, if you feel completely alone, if you have autism too… you know just how hard that really is.

But your future self is counting on you. Your future self is waiting for you.

Be there.

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