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What I Hope

April 9, 2013 By

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I hope that George knows I will always support him in whatever he wants to do, and that I will never see his autism as an obstacle.

I hope that when I am weathering the challenges of autism with George, I am acting in a way that helps him instead of hindering him.

I hope that James knows I understand how tough it must be, being the sibling of a child with autism.

I hope that James knows how immensely I value him as an individual in his own right, and that he is not defined by virtue of being George’s brother.

I hope that George knows he is not defined by autism, but that autism is just one part of who he is.

I hope that the moments of weakness that I have – those times when my desperation and sense of being overwhelmed spill over – do not undermine my kids and cause them lasting damage.

I hope that my better moments – the laughter and the hugs and the words of encouragement – build up their confidence and self-esteem.

I hope that I can always be the kind of autism mom who never gives up a fight, no matter how hard and scary it can be.

I hope that when I talk to strangers about autism, or when I write about it, I am doing so in a way that will help both of my kids as they navigate their way through life.

I hope that I will have the courage to stand up to anyone who ever tries to hurt my kids.

I hope that my kids know that when autism parenting just gets too hard for me to handle and I need to spend time by myself, it’s not because of them. It’s because of my own fears and insecurities that I want to protect them from.

I hope that my kids know I love them without reservation, without boundaries, and beyond the ends of time.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Children, Health Activist Writers Month Challenge, parenting Tagged With: , , , , , , ,
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Challenges of Special Needs Parenting

August 23, 2012 By

This week, I am participating in the WEGO Health “Advocating for Another” carnival. Each day, there is a prompt that I answer in the form of a blog post. Although only George has the autism diagnosis, we also recognize the challenges faced by his little brother. All of my posts here this week are dedicated to him.

Today’s prompt: Challenge accepted! Parenting isn’t all sunshine and ice cream – it’s hard. Write a post that delves into 3 challenges that you face as a parent.

Me and my boys, September 2010

“That must be so hard.”

That is a common response when people find out that my son has autism. And they are right. It is hard, but not necessarily in the ways one might expect. Because as parents, we all do what we have to do. We all want the same things for our children, whether they have special needs or not. We try to keep our children safe, and for me, that sometimes means physically restraining my son to stop him from banging his head on the hardwood floor. We try to make sure they are reaching whatever potential they are capable of, and for our family, that entails intensive behavioural intervention, speech therapy, individual education plans, and navigating the special education system.

These things are challenging, and at times, heartbreaking. But I am so busy just doing what needs to be done that I don’t really give a lot of thought to the hardship factor of it all. At the end of the day, the reward is far greater than the challenge. We get the smiles, the hugs, the occasional leaps of progress that make it all worthwhile.

As full of bravado as I might sound, though, I am only human, and there are things about this whole special needs parenting gig that I wish I could be better at.

Managing the sibling connection

I often worry that James got a rough deal, being the brother of a kid with autism. So many things happen that, if I were in James’ shoes, I would be downright mad about. James, for instance, gets more timeouts than George, not only because he is more aware of what his behaviour should be like, but because George doesn’t really get discipline. I can explain to James until I’m blue in the face that the best way to punish George for bad behaviour is to simply ignore it, but how can a six-year-old be expected to understand that?

Then there are the times when James has to patiently stand by waiting for attention while I am dealing with one of George’s meltdowns. Those meltdowns, which involve George screaming in frustration and trying to bang his head on things, must be so frightening for James to see and hear. And yet this little kid waits patiently for whatever he needs, be it a cup of milk, or the answer to a question, or simply a comforting hug.

I try to make it up to James in other ways. I try to talk to him about George’s autism and what it means. There is no doubt in my mind that James adores his brother, and for the most part he seems to be happy. But I cannot help wondering just how well I am doing this parenting thing. How good a job am I doing of balancing the oft-conflicting needs of my two boys?

Managing the marital connection

When George was first diagnosed with autism just over five years ago, my doctor gave me a startling statistic. About 80% of couples who have children with special needs or chronic illnesses break up. I think that is unspeakably sad. I mean, when someone’s life is turned upside down by the reality of there being something wrong with their child, a strong spousal partnership could bring such comfort and take away that feeling of being all alone. But instead of coming closer together, many couples are ripped apart by their grief.

My husband and I both went through a process of grieving when we first discovered that George had autism. We had put together a beautiful picture of what our family life was going to be like, and in one swoop that picture was destroyed. At the time, we had no way of knowing that we would ultimately build a new picture – one very different to the original, but no less beautiful. All we knew was that we were crushed under the weight of what was going on.

Things got rough for us, but we survived. Together. We have our moments where things aren’t so great, but in the end we are partners, and we are in this together.

It can be so hard, though, to find the time and energy for one another. We are both working so hard to create the best possible lives for our boys, that sometimes we drift a little. At those times, we have to make the effort to drift towards each other.

Managing my own needs

I don’t claim to be anything special. I’m just a regular mom who happens to have a child with autism. I have a full-time job a one-hour commute away from home, I help out with my husband’s business, and I raise my kids. I cook, I clean, and I do laundry. I make sure the bills get paid and I try to get to bed at a reasonable hour each night.

I stay sane by running, and by writing. Occasionally, I even write stuff that makes sense. I love to write because it gives me a voice. I love to run because it provides a physical release from the stress, and because it gives me time to myself, to clear my head.

Here’s the thing, though: I am only one person, and no matter how well I manage my time, there are only 24 hours in one day. And when I start running out of time to do everything that needs to be done, the first thing to go is the stuff that I do for myself. Gaps start to appear in my blog. I submit archive pieces to the ezine I write for. I curtail training runs, or even – Lord forbid – cut them out altogether.

It’s as if my lowest priority in my life is myself. And I wonder if that is OK. Could those bills not be paid tomorrow instead of today? Will the world end if the laundry doesn’t get done right away? Does it matter that, once in a while, I’m grabbing something convenient from the freezer just so I can spend time taking care of myself?

I don’t know the answers. But I do think I do a reasonable job as a parent, and I am having the time of my life seeing my kids grow up.

(Photo credit: Holly Bannerman)

Filed Under: autism, Autism Diagnosis, Brothers, Challenges, family, Marriage, Self-Care, WEGO Health Tagged With: , , , , , , , , ,
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Autism Meltdowns: Six Strategies For Helping Siblings

September 10, 2011 By

It is a scenario that parents of children with autism are confronted with countless times: the child melts down for no apparent reason while his or her brother or sister stands by helplessly, not understanding what is going on. Autism meltdowns can be particularly bewildering for younger siblings who may not fully understand what autism is or why the meltdown is happening.

The strategies that I am describing today are based purely on my own experiences. I did not read them on the Internet or get them from any parenting books. I learned these in the best way possible: from the School of Hard Knocks.

1. When a child with autism starts having a meltdown, the primary concern should be for everyone’s physical safety. The child is going to lash out wildly, hitting or kicking whatever or whoever he comes into contact with. He may run around with no real direction and bang his head on objects or people. Children going through an autism meltdown seem to have superhuman strength, and there could be a real threat to siblings who are standing too close. Therefore it is imperative to ensure the safety of the siblings as early as possible in the incident. This can be accomplished by taking them to a different room and making sure they have enough toys or books to see them through for what could be a couple of hours.

2. Siblings should never be punished while a meltdown is happening. This may seem intuitive, but it can be really easy to fall into the trap of yelling at siblings who happen to get too close while the parent is trying to deal with the autistic child. We are, after all, only human. If a child wanders up during a critical moment, we can have a knee-jerk reaction to yell, “Get away!” or “Go to your room!”  Doing this may make the sibling feel that he is somehow responsible, and that is not a burden any child should carry. A better strategy would be to ask the child to leave the room, promising that you will go to them as soon as their brother or sister is OK.

3. Recognize that the siblings are not only bewildered and confused by what is happening, they are also in all probability deeply concerned about their brother or sister. In the scenario described above, where the sibling is getting too close, it may be helpful to verbally acknowledge this. Tell the sibling that you know how scary this is for them, that you know they are worried. This simple strategy will validate their feelings and give them permission to feel the way they feel, and it can go a long way to helping them weather the storm.

4. When the meltdown is over, take the time to explain to the siblings what just happened. Talk to them about autism and how children affected by it sometimes have difficulty processing emotions or sensory overload. It is fairly common for siblings to start apologizing in the aftermath, worrying that something they did caused the explosion. They have to be reassured that this was not their fault.

5. More often than not, the sibling is going to need some post-meltdown reassurance that their brother or sister is OK. Bear in mind that they have just been witnesses to an extremely intense melting pot of emotion. They may want to see or talk to their brother or sister. Exercise caution, because meltdowns that have passed can flare up again, but is important for you allow (but not force) interaction between your children.

6. Reserve some time to spend exclusively with your autistic child’s sibling. It can be tough, being brother or sister to a child with autism. There are many times when the needs of the typically developing children are sidelined because of the special needs of their sibling. Meltdowns definitely fall into this category. Because of the nature of these explosions, parents have no choice but to mostly ignore one child so they can focus on the safety of another. When the meltdown is over – be it immediately or later in the day – that time should be given back to the sibling without autism. Read to your child, watch his favourite DVD with him, let him choose a game to play, or simply spend time snuggling with him.

Managing meltdowns involves so much more than taking care of the child with autism. We have to consider our typically developing children as well. Even though they don’t have autism, they are still children, and they look to us to protect and reassure them. Using these strategies consistently can help them develop their coping skills and enhance their relationship with their autistic brother or sister.

Do you have any tips to add to my list? Please leave them in the comments!

(Photo credit: http://www.flickr.com/photos/nicolesfromtheheart/4290444513. This picture has a creative commons attribution license.)

Filed Under: autism, Meltdown, parenting, Siblings Tagged With: , , , , , , , ,
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All We Need Is A Reason

November 17, 2010 By

This morning I woke up early and went to the gym for a rare run on the treadmill.  As a general rule, I am not fond of treadmill running.  It makes me feel a bit like a lab rat, or a hamster running in one of those little wheels.  You never actually go anywhere. You don’t feel the freedom of the open road.  It all seems a little pointless, like tofu or decaffeinated coffee.

On the odd occasion, though, a treadmill workout is better than a road run. This can be true from a circumstantial point of view (you’ve woken up with sore knees and you need to run on a surface with some give; you’re tired and cannot be bothered to map out a route; the weather outside is frightful and you cannot find your balaclava or your will power).  A treadmill run can also be beneficial from a training perspective, especially during the winter.  It can be kind of difficult to do a tempo run or speed reps outside when it’s snowing and there’s a gusty wind blowing.  Far better to head to the gym where you can focus on maintaining 5:30 minutes per kilometre without stressing about snow, wind, ice on the sidewalks, or the fact that it’s dark and you look like a burglar.

So anyway, I went for my treadmill run and worked up a good sweat.  I had some anxiety to work out of my system, so I really belted it, clocking 5km in 24 minutes. Feeling a lot better and pleasantly loosened up, I returned home, where everyone was still asleep.  Before taking a shower, I checked on my boys.  At some point during my absence, George had crawled into bed beside his little brother, and the two of them were sleeping peacefully, James clutching his stuffed giraffe, George with arm over James’ shoulders.  It was one of those moments that reminds me of why I love being a mother, and why, in fact, I was running on the treadmill at such an ungodly hour in the first place.

It is so weird to think that two years ago, I could barely run around the block. I had been bitten by the running bug previously, of course, but after seven years of no exercise my lifestyle was decidedly sedentery. I was decidedly unhealthy, and my clothing was decidedly tight.  I had tried, over the years, to make comebacks to the world of running, but there was always something that stopped me. Injury, illness, lack of time. When it came down to it, though, all I lacked was the right motivation.  When I got that email from the Geneva Centre for Autism back in April 2009, inviting me to join their team for the upcoming marathon/half-marathon/5km Charity Challenge, I knew instantly that I had finally found a reason to get with the program, and to stick with the program.

Initially I considered the 5km event.  After all, I hadn’t run in seven years and I was about seventy pounds overweight. And the event was just six months away. But the little voice in my head that never shuts up until it gets its own way piped up and chanted, “Half-marathon! Half-marathon! Half-marathon!” And before I knew it, I had clicked on the link in the email and signed up for the half-marathon. Six months later, I stood at the finish line somewhat stunned by the fact that in just half a year I had shed sixty pounds, gotten myself into some semblance of “shape”, and completed a half-marathon.

A year further down the line, I have run several races and two more half-marathons.  Another two are planned for 2011, and my comeback to running is now firmly established.  All thanks to those two little boys who were snuggled up together this morning, sleeping beside each other, making me feel like the richest person on the entire planet.

Have you ever done something that you thought would be beyond your limits?  What motivated you, and what helped keep you going when things got tough?

(P.S. My first post for World Moms Blog was published today.  Check it out:
http://worldmomsblog.com/2010/11/17/little-brother-big-hero/)

Filed Under: autism, Children, family, fundraising, parenting, running, Siblings Tagged With: , , , , , , , , , , , ,
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Never forget the siblings

March 29, 2010 By

As I work towards my Run for Autism, my inspiration is George.  He’s the only member of my family – either immediate or extended – who has been touched by autism.  I could go on all day about his challenges, his strengths, and the fact that what most “typical” parents see as minor developmental milestones are, to me, gigantic accomplishments that make me want to jump for joy.  I am in the process of starting to work with a holistic lifestyle coach named Brandon: the first time I spoke to him he told me that while parenting in general is equivalent to a full-time job, parenting a child with autism is equivalent to an additional full-time job.  It makes sense.  I have to maintain two completely separate styles of parenting for my two children, because what works for one definitely would not be appropriate for the other.

And in this sense my Run for Autism is inspired not only by my autistic son George, but also by my neurotypical child James.  James, in addition to just being James, a unique individual in his own right, is also the brother of an autistic child.  Although he is chronologically the younger of the two, in most senses he is actually older.  He has the verbal skills, the social skills, the adaptive skills that his brother does not have.  There are times when he is called upon to understand the kinds of things that kids his age shouldn’t have to worry about.  He has a very strong sense of what is and is not fair, and when George’s autism leads to us reacting in a way that James perceives to be unfair, it can be very hard for his four-year-old mind to process.  Being the sibling of an autistic child cannot be easy.  And so when we do something to improve the lives of autistic children, we are also by extension doing something to improve the lives of their siblings.

We are very fortunate that James is the kind of child that he is.  He is a highly verbal, very social child.  He has opinions and he’s not afraid to express them.  Although there is definite sibling rivalry, James adores his big brother.  If he is given a cookie, he requests one for George.  If we do something simple like take George’s hat off his head in a playful moment, James will get upset and demand that we return the hat to its rightful owner.  When George is having a meltdown, James feels sad and says things about how he will take care of George.  He has never used the word “autism” in relation to George, but he is aware of George’s disability. Based on his character, both Gerard and I believe that James will grow up to be friend and advocate to his brother.

I frequently worry about whether I am doing right by James.  So much of James’ life is shaped by George’s autism.  A simple example is Mr. Potato Head.  George loves Mr. Potato Head.  He has about twenty of them, and he has to know where they all are at all times.  If anyone touches his Mr. Potato Heads he gets very upset.  Any Mr. Potato Head that enters the house is automatically deemed to be George’s property.  There have been times when James has tried to play with a Potato Head, and he’s been prevented from doing so, either by George himself or by parents who are too frazzled to deal with a meltdown.  Over time, James has been conditioned to not play with Mr. Potato Head.  I have no idea whether he’d like it or not, and I feel oddly sad that we’ll never find out.  Another one like that is Lego.  We tried getting James Lego that is different in appearance from what George likes, but we have had limited success.  James will still make the occasional attempt to play with Lego, and if I happen to be around, I play with him and fend off George’s intrusions.

I sometimes wonder whether James’ passion for trains and cars is genuine, or if it’s just something he has gravitated to because George isn’t really interested in them.  When these thoughts start troubling me too deeply, I console myself with the knowledge that James truly does love his cars and trains and gets a lot of joy from them.

What I really want to convey is this: autism does not only affect the individual diagnosed with it.  It touches every member of the family.  The autistic child is not the only one who needs special care and attention.  We must never forget the siblings.

Filed Under: autism, family, parenting, Siblings Tagged With: , , , , , , , , ,