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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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Video game lesson – If you can see it, there has to be a way

By on March 9, 2013 in Autism

Cameron - Video GameWhile my boys were playing video games today, there was a level where they could see a door but, try as they might, they could not reach it. I sat and watched as they tried and tried again. Sure, they got frustrated but they didn’t stop until eventually, one of them said “There has to be a way!”

And you know what? They got it. It took a little while but they got it.

I couldn’t help but think what a great lesson that is, not just in playing video games but for life in general. And how much I hope that they can carry that lesson forward in all the things they do.

As I sat there, watching them try and try and try, I thought about all the great successful people that most of us wish we could emulate and it occured to me that their philosophy probably wasn’t that far off from what my children were practicing right at that very moment:

If you can see it, there has to be a way to get it.

I thought about my own life. How I want to learn new materials to advance my career. How I want to start losing weight. How I want to learn new things to get my foot in the door in a more official capacity in the world of autism.

I can see these things. They’re attainable goals. They’re very real possibilities in my future. What I have lacked all this time is the belief that there’s a way to attain them.

I think that’s true for many people in many circumstances in their lives. We set goals, especially New Years resolutions, because we can see ourselves reaching those goals, but when we struggle or fail along the way, we stop believing that there’s a way to reach those goals. We can still see them, we just stop trying to find a way.

But a lot like a video game, if you can see it, there has to be a way. That door was put there for a reason. That extra power up, that extra gold reward, that extra life, it was put there in the game, where you can see it, to make you think and to make you try. It’s a way to challenge you.

The same is true in life. The things we want, the things we need, the goals we work for, they’re put there to challenge us, to make us think and to make us work for it. There has to be a way and so long as we never give up, we’ll find it.

Sometimes it takes a little boy with autism, doing what he loves, to help me see things more clearly.

It’s funny how that works.

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

By on March 6, 2013 in Autism, Special Needs

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.

More:

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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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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With autism, consider making the path your goal, not the goal your path

By on February 26, 2013 in Autism, General

Read a “how to be successful” book and it will tell you to start with a 5 year goal, then break it down to 5 individual yearly goals, then break those down to monthly goals, then to weekly and eventually to daily goals. The idea being that you set your sights on where you want to be and break it down to the steps you need to take to get there.

When our child is diagnosed with autism, we tend to focus on them having a family of their own one day, a steady job and all that “normal” stuff we think will be what makes our child a happy grown up some day. Then we deconstruct that backwards into smaller goals. With autism, it’s not as easy to break down into daily or even weekly goals but that’s what we’re thrown into by way of scheduled therapy sessions, ABA and strict routines.

And when something doesn’t appear to be working, we change paths. Our focus being the goal no matter which path we need to get there. Rightly so, I mean, this is our children we’re talking about. A parent does what ever a parent needs to do for their child.

When Cameron was diagnosed, we were faced with a lot of wait lists. We were in the right place to get the best therapists and everything that Cameron would need but we’d have to wait until after he was 5 years old to get it. We searched around and found a school with a new autism program where a select few classes are specifically for autistic children.

We were faced with a choice: wait for what we were told are the best services available or move, losing most of everything we had, and get immediate help but unsure of how well it would go. Back then, all we knew was that it was a new program at a little school in a little town.  So, start immediately with the unknown or wait several years for the best.

I look back at it as more than just a choice of starting then or starting later, I see it as choosing between the end goal and the path to get to that goal.

Focusing on the end goal, to me, is a way of focusing on the problem. You still love your child and want what’s best for them, but you’re so very focused on removing what ever road block is in front of them that the path to reaching that goal becomes unimportant.

You spend your time talking about the problem, dwelling on the problem, asking for advice on the problem, reading about the problem, writing about the problem, trying different things to solve the problem… eventually the people close to you hear you talking more about the problem than about your actual child. They’d never tell you that and it would never feel like that but let’s face it, you become a bit of a downer dude.

In this way, the problem becomes your path to the goal. “What ever it takes” is driven by the road block, by your drive to over come that road block and reach the end goal.

Focusing on the path, however, allows you to still get to your end goal but the way in which you look at and approach the situation can be drastically different.

Consider this, that the one key constant between now, your end goal, all of the road blocks, all of the successes and everything in between, is your child.

Given all of that, if you could choose only one thing to put your focus on and keep it there, what would it be?

It’s not that I suggest giving up on anything, only shifting your point of view a bit.

You can’t force the future to be what you want it to be, you can only do your best here and now, in the present and trust that it will be enough to take you to the future that you want. What you have right now are not problems to be solved in order to get the outcome you desire.

You have a child. A child that is waiting for you to line up some cars too. To spin them on their roof. To get more building blocks for sorting by color. For sitting down and drawing trees, or trains or what ever they love to draw too. A child that loves you so very much even if they can’t find a way to express it to you. A child who doesn’t want you to think they’re a burden and certainly not a problem for you to solve.

The path to the goal? It’s a kiss on the head as they sleep. It’s a rare hug out of nowhere. It’s a favorite blanket that you always remember to have for them. It’s giving them the freedom to leave the dinner table in between bites if they have to. It’s in reading the same bedtime story 5 years in a row.

By the way, that school that we gave up everything for? Best decision ever. The teachers, EAs and entire school is just so kind, caring, nurturing and understanding that I believe Cameron never would have come as far if we had gone to “the best”.

We focused on our child. In letting him be a child. In joining him on his path rather than forcing him to take our path.

If you want a new house or a car or a boat, make yourself a plan of action and focus on your goal.

If you have a child with autism, make yourself a goal and then focus on your child. With your love and support, your guidance and encouragement, they’ll lead you to it. You’ll just have to follow their path.

path_rainbow

Make your path the goal

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