post

If I Could Do Anything…

April 5, 2013 By

wordcloud

Imagine for a moment that we live in a world where anything is possible. Money is no object, there are no stupid politics to get in the way, and logistics are never an issue.

If I could do anything…

… all children with autism would receive autism intervention therapy, be it IBI, Floortime, or any other methodology.

… all children with autism would have IEP’s that truly address their goals, and teachers who actively help the child work towards those goals.

… all siblings of children with autism would have access to programs and activities just for them, so that they could have fun with other kids who understand what it’s like.

… all autism families would get to go on vacations to autism-friendly places, where the parents could get an occasional break.

… children and teens with autism would never be bullied.

… every kid with autism would have easy access to sensory equipment, like swings and weighted blankets.

… every kid with autism would have a dog.

… big box stores like Wal-Mart would have “quiet” shopping areas, where the fluorescent lighting is less harsh, there are fewer people and the checkout areas aren’t so intimidating.

… ditto for airports, which would also provide special boarding for autism families.

… all autism parents would have the financial means to attend conferences and parent training and information sessions.

… autism parents would stop bickering over the causes of autism and judging each others’ vaccination and nutritional choices.

… the general public would have easy access to information about autism that is realistic and devoid of sensationalism.

… people with autism wouldn’t wander off and later be found dead – everyone would be safe, always.

… people with autism would have the same opportunities as anyone else to reach their full potential, whatever that might be.

… autism parents would be able to grow old without constantly worrying about the future, because they would know that their kids would be taken care of.

… no-one would believe that ridiculous myth that people with autism are incapable of emotion – everyone would be hugged by someone with autism at least once in their lifetime, and they would cry from the absolute beauty of it.

Filed Under: autism, Health Activist Writers Month Challenge Tagged With: , , , , , , , ,
post

Autism Through A Child’s Eyes

April 8, 2012 By

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 8 – Best conversation I had this week: Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

I’m not much of a person for conversations. I suffer from social anxiety, so talking is difficult. I tend to be more comfortable finding my voice in the form of the written word.

Obviously, this is less of a problem when I am among friends and family. I am married to a man who, in addition to having a totally off-the-wall sense of humour, has no “inside voice”. The conversations I have with him range from the baffling to the downright hilarious.

I also have some great conversations with my younger son, James. For a six-year-old, his vocabulary is astounding, and his imagination knows no bounds. He weaves in and out of topics at will, and you can never tell where the conversation will go next. One moment he seems to be wise beyond his years; the next, we are reminded that he is still a kid finding his way in this world.

A few days ago, we had this conversation while I was cooking dinner:

James: Mommy, can you buy me a water gun?
Me: Why do you want a water gun?
James: So I can spray Granny on the nose.
Me (after snarfing on my coffee): Why do you want to do that?
James: Because her nose is dry and that means she’s sick. Roger (a classmate) said so.
Me: Roger said that Granny is sick if her nose is dry?
James (looking at me as if I’m nuts): No. He was talking about his dog.
Me: Ummmm, James? Dogs and people aren’t the same. Granny’s nose is fine.
James: I think Roger’s dog has autism.
Me: What makes you think that?
James: He doesn’t talk and he knocks down Roger’s Lego towers. It’s not his fault, though. He doesn’t know what he’s doing because he has autism.
Me: James, that’s just the way dogs are. Dogs don’t have autism.
James: How do you know?
Me: Ermmmmm (thinking: the kid has a point)
James: Mommy?
Me (wondering about James’ sudden sombreness): Yes, buddy?
James: Will George always have autism?
Me: Yes, baby, he will. Autism is not something he can grow out of.

I want to pause this account briefly to say that where autism discussions with James are concerned, I find that honesty is the best policy. I don’t try to sugar-coat anything, and I answer questions without elaboration. This approach seems to be the one that works best with James.

James: That’s OK. I love him.
Me: I know you do. And he loves you too.
James: Yeah! Mommy?
Me: Yes?
James: Will George die from autism?
Me: No, people cannot die from autism. We just have to make sure we keep him safe.
James: It’s OK, Mommy. I’ll take care of him.

Yes, I cried.

(Photo credit: Kirsten Doyle)

Filed Under: anxiety, autism, Children, Conversations, Empathy, Humour, Siblings Tagged With: , , , , , , ,
post

The Birth Of Brotherhood

March 5, 2012 By

On the evening of Christmas Eve 2005, my husband and I lay on our bed with our son George between us. Then a little more than two years old, George was doing his usual pre-bedtime rolling around with Mommy and Daddy. It had been a nightly ritual from the day he was born. He would lie quietly with us while he drank his bedtime milk, and then he would spend ten minutes climbing onto my husband and then falling off in fits of giggles. It was a time that we treasured, but on this particular evening, I was feeling undertones of melancholy. My body was telling me that my second child would be born the following day. Which meant that this ritual was about to come to an end – or at least, dramatically change. In an odd way, I had already started feeling nostalgic for George’s only-child days.

It’s not to say that I wasn’t happy about the pending arrival. I couldn’t wait for this addition to my family. I was excited about bringing home a baby brother or sister for George, even though it would be a bit of a surprise for him to suddenly have an entire other human being in the house. Throughout my pregnancy, he hadn’t shown any signs of understanding what was going on, other than that he wasn’t allowed to jump on Mommy’s very large belly.

The baby did indeed arrive the following day, Christmas Day 2005. Having languished in his floaty home for a week past his due date, he was now very eager to get out and start living. I spent James’ first two days of life in a haze of exhaustion. When I had time to think, it was to wonder how George’s introduction to his new sibling would go.

As it happened, James started crying while we were driving him home for the first time. He wanted to be nursed, yet again. All about the boob, that one was. When we got him home, I settled down on the couch with him to nurse while my husband retrieved George from my mother-in-law. When George came bounding into the room to jump on the couch, I told my husband not to stop him. George stopped short at the sight of this tiny being attached to me, but although he was clearly surprised, he did not seem to mind the being’s presence. He didn’t say anything about it, but George was saying next to nothing at that time anyway.

For the first few weeks, George seemed a little bemused by James. I had the impression that he did not really see James as a person, but as an extra thing lying around the house. This was illustrated to me perfectly one day when James was lying on his back on the floor. We had one of those big foam alphabetic floor puzzles, and James was lying on that – in the exact spot where George wanted to play. George very matter-of-factly went up to James and took one tiny ankle in each hand. He then proceeded to drag James off the floor puzzle and onto the carpet. He was not rough or aggressive about it. He was merely moving something from Point A to Point B while I cracked up laughing. James didn’t seem to mind being displaced in this way. He just kind of looked at George with an air of resignation.

I will never forget the day I saw a shift happen in George – a shift from indifference to genuine brotherly affection. I had just changed James’ diaper and he was lying in the middle of my bed. George came in from wherever he had been and grabbed James’ leg as he was climbing onto the bed. James gurgled and waved an arm in response to being touched, and George stopped and stared at him, as if realizing for the first time that there was a person in there. His facial expression changed from one of curiosity to one of absolute tenderness. He reached forward, and with both arms, he reached out, lifted the baby and drew him close in a protective embrace.

It was the first time George spontaneously hugged James.

In that moment, I felt that my two sons truly became brothers.

Filed Under: Baby, Brothers, Children, family, Pregnancy, Siblings Tagged With: , , , , , , ,
post

Autism Brothers

November 8, 2011 By

Sometimes, when you’re five years old and your big brother has autism, life just isn’t fair.

This weekend I spent a lot of time worrying about my son James. The worrying was prompted by reports from his before- and after-school program that he’s been acting up and is “always in trouble.” Initially, my husband and I put this down to James’ independent nature. He is a strong-willed child who is currently going through a phase of pressing other peoples’ buttons and seeing how far he can go.

But my gut instinct is telling me that I shouldn’t be giving James a hard time about his behaviour in the program – at least, not yet. Not until I have had a meeting with the program administrators to get a clearer picture. I have this nagging feeling in the back of my mind that there is something else going on here, something that might be making my baby unhappy.

About six weeks ago, we went through a decluttering blitz at my house. We got rid of toys and clothing that the boys had outgrown, and we threw out stuff of our own that has been lurking in boxes in our basement since Noah built the ark. One of the items we found was a calendar from a Chinese restaurant. It has the entire year on one long piece of fabricky-type stuff that rolls up like a mini-blind. James was fascinated with this thing and asked if he could have it. I said yes, and passed it over.

Last week while James was playing with the calendar, George kept grabbing at it and saying, “Mine!” James was getting upset because George was bugging him, and George was getting upset because he wasn’t getting the calendar. The situation escalated to the point of George having a meltdown and trying to headbutt James. And in order to stop George from going off the deep end, my husband took the calendar from James and gave it to George.

James was devastated. He sobbed his little heart out. It was bedtime anyway, so I carried him to his bed, lay down beside him, and held him tight. My own heart felt like it was breaking.

James didn’t see that my husband had been trying to stop a bad situation from going completely out of control. He just saw that we had taken away something that belonged to him, and given it to George.

There have been other times when George has gotten what James must perceive to be preferential treatment. We have to make allowances for George’s tolerances and levels of understanding. When James gets a timeout, he understands that he is being punished for something. This is completely lost on George: consequently, George never gets timeouts. We have different expectations of the two boys where it comes to sharing their toys with each other. Sometimes, family outings have to be cut short because George is not coping.

I cannot help asking myself: is it any wonder that James is trying too hard to assert himself in an environment other than home? Could it be that his perceived lack of control within his family is leading him to try and establish it elsewhere?

I try hard to make it up to James in other ways, but I wonder if I am doing enough. My mind keeps coming back to the idea that this poor kid probably doesn’t even have faith that his toys will remain his own. I worry about whether we are expecting James to have more coping ability than he is developmentally capable of.

It is clear to me and my husband that James loves his brother. He is always – with increasing success- trying to get George to play with him. When George is being reprimanded for something, James is standing up for him. And sometimes, when James wakes up from a bad dream in the middle of the night, he crawls into bed with his big brother and the two boys snuggle up to each other.

As much as they love each other, though, it seems to me that at times, the happiness of one has to be sacrificed for the needs of the other.

And that just isn’t fair.

(Photo credit to the author)

Filed Under: autism, Brothers, Children, Fairness, family, parenting Tagged With: , , , , , , , ,
post

He Ain’t Heavy, He’s My Brother (2010/04/23)

April 23, 2011 By

With the arrival of my Mom yesterday, I did not have the time or inclination to post. However, I do still want to keep up with the Post A Day challenge, so for the next two weeks, while I’m doing stuff like visiting with my Mom and getting married, you may see a number of reposts. Like this one… I thought it would be fun to unearth the post from this day in 2010…

My boys have fallen into a new sleep routine.  At bedtime, we do all the stuff we always did.  They get their jammies on, use the bathroom, brush their teeth (most days they have a bath earlier in the evening).  For story-time, I sit on my glider chair between their beds – the same glider chair that saw me through countless night-time feedings when my boys were infants.  George gets right into bed, James curls up on my lap, and they each drink their milk while I read a story (current flavour of the day: anything to do with Thomas the Train).  After the story, James gets into his bed, each of them gets a sip more milk, and the lights go out.

About five minutes later, we usually see a little face quietly peeking around the corner: George, trying to sneak onto the futon we have in our living room so he can watch TV.  Or maybe he just wants the extra hugs we always give him, because once we’ve hugged him he goes back to bed amenably enough.  At some point during the night, usually fairly early on, he migrates to the sofabed in the playroom, and sleeps there for the rest of the night.

Sometimes I worry about this.  From time to time, when one of the kids is having a hard time, I have to sleep on the sofabed with said kid, and that thing ruins my back.  I always wake up the next morning feeling as if I’ve been tortured by Vikings.  I worry about whether the sofabed is doing to George’s back what it’s doing to mine.  But once he’s there he won’t budge, he sleeps soundly, and he wakes up cheerfully enough.  So maybe he’s OK and I just need to chill out a little instead of finding yet another thing to be perpetually stressed about.

In the meantime, James is sleeping soundly in his own bed.  He’s a little champion at bedtime, James is.  Once the lights are out he goes right to sleep without a fuss.  He usually wakes up in the middle of the night, though – sometime between midnight and three in the morning.  When I found out the reason for his nocturnal awakenings, my heart soared: he gets lonely for his big brother.  He makes his way to the sofabed, climbs in beside George, and goes right back to sleep.  George surfaces just enough to shift to make room for James, then he goes to sleep as well.

I am always the first one in the household to wake up in the mornings.  Some days – like today – I go for an early morning run.  Other days, I like to get dressed, pour out a cup of coffee, and have some me-time at the computer reading emails or playing meaningless games on Facebook.  I love carving out that time for myself in the mornings, before the rest of the world wakes up.

Whatever I am doing – running or playing on the computer – the first thing I always do is check on my boys.  I go to the playroom and watch them sleeping peacefully, each completely at ease with the other’s presence.  They look cosy and comfortable, like a pair of sleepy kittens.  There is always physical contact between the two: James’ hand resting on George’s, or George’s hand lightly touching James’ shoulder.  When I checked on them this morning, George’s arm was flung over James’ shoulders.  It looked big brotherly and protective.

I savour those moments as I watch them and wonder what dreams are going on in those little heads.  Even though they are sleeping, I feel as if I am witnessing a moment of special connection between the two brothers.

Filed Under: Brothers, Children, Siblings, sleep Tagged With: , , , , , , , , ,