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Somewhere along the way, I became a parent. This is how I know it’s true.

By on April 25, 2013 in Parenting

Somewhere along the way I became a parent. I’m not entirely sure why but all of a sudden, it just hit me like a ton of bricks.

Was it when my first child was born? No, I don’t think so. At that point, I became a dad, sure. But for the most part, waking up to bring the baby to his mom for feedingss and changing some diapers really didn’t make me a real parent. I was responsible for this little, very much dependent and fragile life but that wasn’t it.

Perhaps it was I had to start putting my name in the “parent or guardian” forms at schools and hospitals… I remember looking at those forms and thinking to myself, I can’t believe my name goes here. But even that wasn’t really it. That was just paperwork.

I know it wasn’t when my son was diagnosed with autism because that made me feel like anything but a parent. I was feeling more lost and scared than most times in my life that I could remember. I got over it quickly though as I learned more and my son impressed me all along the way but still, that wasn’t it.

I really thought the moment that I became a parent was when my boys would do something wrong and I’d open my mouth only to hear words that I thought only my mother would ever say. I was suddenly watching my own childhood from a totally different perspective. I had, in effect, put myself in my mothers shoes and at that point, I thought to myself, “wow, I must really be a parent now”. That was a very good start but that wasn’t it either. That was me playing the role, I think. It slapped the thought across my face but it still hadn’t sunk in quite yet I think.

Dead: 12-year old Alex Swigart saved his dad's life after waking he and his girlfriend up when their mobile home caught fire

Dead: 12-year old Alex Swigart saved his dad’s life after waking he and his girlfriend up when their mobile home caught fire

Then, as I became more involved in the autism community and started getting more and more information fed to me by an ever evolving social media, I started to come across stories like this one, where a 12 year old boy with autism saved his family, only to die in the fire himself. It’s not the story itself that got to me, although it is tragic. It’s one sentence in the story, that made my heart sink. It was this:

Fighting back tears he said: ‘I yelled inside the window and I heard him call to me, “Daddy I can’t breathe!”‘

I didn’t read the rest of the article beyond that until the next day. I couldn’t. All I could think about what how hard that must have been, to hear his child… the most precious and important thing in his life ever, calling out to him, in pain, and being powerless to do anything about it.

I’ve read stories like this before. It never hurt me like this.

It’s been happening a lot lately too. Stories that would have saddened me before but never felt like a knife in my heart like it does too, are crossing my path at an ever increasing rate.

Loss: Autistic 6-year-old Dylan Hockley died in the arms of his special education teacher in another classroom; his parents have set up a memorial fund of their own to help children with autism and special needs

Loss: Autistic 6-year-old Dylan Hockley died in the arms of his special education teacher in another classroom; his parents have set up a memorial fund of their own to help children with autism and special needs

Another example was the Sandy Hook shootings, in which the entire ordeal was a tragedy… but what really hit home the hardest was little Dylan Hockley, a 6 year old boy with autism. In this story, once again, I was reading it with a heavy heart as I normally would but then I got to this part and I just felt crushed:

“He said that Anne Marie Murphy had been found with her arms wrapped around Dylan … that is what we had hoped for — in a very strange sort of way to hope for something.”

“She loved him and he loved her and she would’ve looked after him no matter what,” she says, fighting back tears. “To know that he was with her, and that he wasn’t alone, that gives you a huge peace of mind … to know that he was loved even in those last moments.”

I can’t stop seeing, in my mind, what it must have been like to be terrified, holding this little boy that is terrified too, despite having no idea what is going on and to know what’s coming and then…

I keep putting myself in these people’s shoes. I can’t help it anymore. I can’t not see the little innocent faces with so much life left to live and their parents that were powerless to help them.

I can’t imagine what those people are going through but it doesn’t stop me from imagining it’s me anyway. It doesn’t stop me from thinking about how much it hurts just to think about that happening to me… to my own child.

That’s how I know I’m a parent. That’s how I know I’m not just some guy looking after some kids.

I can’t read these stories like I used to. I can’t watch the videos like I used to. It doesn’t just sadden me anymore. It hurts. I really really hurts.

Before I had children, even for a while after, when other parents would tell me that your perspective of the world would change, that the way you feel about a lot of things would change, I thought I understood. I didn’t.

I can’t read the last words of a dying child anymore. Not without shedding a tear, or more. Not without profound feelings that will affect me for a while after.

That’s how I know I’m a parent.

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

By on March 11, 2013 in Autism, Parenting

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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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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Explaining death? Easy. Explaining not existing before life? No so much.

By on January 9, 2013 in Autism, Parenting

brothersMy boys, Cameron (7 with autism) and Tyler (5 without autism) often have conversations about when they were babies. They’re obsessed with talking about what they did as babies or what babies do and at what age they started doing things.

This morning, we were talking about an old television show that we all used to watch when they were babies and the strangest thing happened… Cameron was convinced nothing had happened before Tyler was born. In his mind, he was always and will always be 2 years older than Tyler and therefore he could not have been around at all until Tyler was born so that he could be 2 years older.

It’s a weird one to wrap your head around but in a weird way, from his point of view, I sort of get it. He relates almost everything in his life to how old he and his brother are. Because he’s 2 years older, everything he does is at a higher level or done sooner. But always with his younger brother.

So when I tell him that he was 1 and we would snuggle on the couch to watch television, he asks where Tyler was.

When I explain to him that Tyler wasn’t here, he wasn’t born yet, he didn’t exist yet… I get a chill from the emptiness in Cameron’s eyes as he looks at me like I had just explained quantum mechanics to him.

He doesn’t understand it at all.

Now death? Death he gets. You’re here… and then you’re not. You stop existing. You go to heaven, you go to sleep forever, you just blink out… what ever. I don’t think he’s given it much thought but he understands that once you’re dead, you’re gone.

But to not exist before you, well, exist, is an incredibly difficult concept to digest. How can that happen?

I think it’s especially difficult in that they’re 2 years apart, making it impossible for Cameron to remember life without Tyler.

It’s not like a quick birds and the bees talk can fix that either. Because in his mind, Tyler was and always will be there. Whether he’s satisfied with “he was still in mommy’s tummy” or not comes and goes but for the most part, I don’t think I can ever convince him that we did things before Tyler ever existed.

The scientific, logical side of me wishes that I could explain it better or help him to grasp it better or even, which is wrong of me, that he could be smarter so that he’d get it. I know he will one day, 7 is still young but hey, we wall want a Doogie Howser for a child.

But the more emotional, sentimental part of me is quite happy with him thinking of his brother as always being there. They’ve always been together and hopefully always will be. To him, there is no life without his little brother and I’m quite fine with that.

If Tyler had to be -2 when Cameron was born, then so be it. So long as they’re in each other’s lives.

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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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