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My Husband Doesn’t Believe Me

March 12, 2012 By

Being a mom is very hard work, especially when you add autism into the mix. While it is more rewarding than anything else in the world, it is also exhausting and overwhelming. At times we special needs moms feel isolated from “real” life, misunderstood by friends and family members, and under-appreciated by our spouses.

Very often, it seems as if we have to carry the full load by ourselves. We are the ones who make sure the laundry is done and the dishwasher is packed. We supervise homework and get the kids to bed at a reasonable hour – at least, we try to. When a child has a sensory-induced meltdown, we are there to catch the fall-out. Many of us also have jobs that involve lengthy commutes, and most of us will sometimes pretend we need to use the bathroom just to get a couple of minutes to ourselves.

I would venture to say that at some point in time, all special needs moms – and possibly all moms in general – feel as if our husbands just don’t get it. They don’t understand how hard it is for us or how overwhelmed we feel. They get confused when we say we are lonely, because they don’t realize that our lack of a circle of friends is not a matter of choice. And sometimes, they are absolutely baffled by the resentment we express when we work ourselves to the bone until late every night while they sit on the couch watching TV.

I am generalizing, of course. There are plenty of men who are not lazy, self-centred and disinterested, just as there are plenty of women who are. Most dads do step up to do the parenting thing, and they do it well. They at least try to be supportive of their partners, even if they don’t always “get” it. I know some of these men. Hell, I’m married to one of them. Even on days when things are less than perfect – you know, those days when I complain about how hard my life is – I am grateful to have a husband who loves and supports me and is Dad to his kids in the ways that really matter. In fact, my husband doesn’t believe me when I tell him about things that some other dads either do or fail to do.

I belong to an Internet support group for parents of children with autism. The vast majority of members are moms, but there is a sprinkling of dads. A thread that’s going on in the group now makes me reflect on how lucky I really am.

You see, parenting a child with autism goes beyond the usual tasks of providing nutritious meals and ensuring that clothes are clean. You have to do things that you wouldn’t have to do for typical children, like teaching basic living skills that other kids naturally pick up from environmental cues. For example, I’ve never had to teach the toothbrushing routine to my younger son, who does not have autism. But for my older son, who does have autism, I have visuals set up and I have to give him verbal prompts throughout. And still, he requires a certain amount of hand-on-hand assistance for this task.

Where boys are concerned, there are certain life skills that it’s far easier for Dad to teach than Mom. Shaving facial hair being one. Aiming properly while peeing standing up being another. Women don’t have the need for one or the equipment for the other.

One of the dads in my Internet group posted a message several days ago offering tips for teaching a boy how not to pee all over the bathroom. Some of the advice was based on the notion of the boy’s father teaching by example. A mom in the group responded to the message by saying that her husband refused to teach their son this particular skill. Her response generated a number of other messages from moms in a similar boat.

Seriously? A father cannot take the time or trouble to teach his son such a fundamental skill? Yes, teaching stuff relating to bodily functions can be less than pleasant, and yes, this kind of thing does come with a certain lack of privacy. But these are our kids, and if we don’t teach them this stuff, who will?

I’m not saying that the dads I am referring to are bad fathers. You don’t have to teach your son how to pee properly in order to be a good dad. I’m just suggesting that it is perhaps a short-sighted approach, and that sometimes we just have to put the needs of our kids over and above our own sense of discomfort. The discomfort is temporary, while the skill learned will last forever.

There are times, of course, when male input is not available. Single moms, or those whose husbands are too incapacitated to help out, make a plan to teach their kids whatever skills are needed.

But dads, if you are present and physically able, please help teach your sons the stuff that dads can teach best. You will give your boys essential skills that will stand them in good stead for the rest of your lives, and the mothers of your children will be that much less frazzled and stressed. Who knows? It could even lead to you and your partner having more quality time to spend together.

And in a world that is high on pressure and low on time, that can only be a good thing.

Filed Under: autism, dad, parenting, Special Needs Tagged With: , , , , ,
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Countdown

February 23, 2012 By

first halfmarathon medal

Three minutes… Will it begin? Or end?

I shift nervously from foot to foot as I look at the crowd around me. The vibe here is immense. I feel like the collective energy created by these twenty thousand people could lift me up and carry me. I have not slept for a week in anticipation of this day, but that does not matter. Standing here, it is impossible to feel tired.

Two and a half minutes… Will these 13.1 miles make me or break me?

It all started six months ago with an email. A local autism centre was entering a team into this race. Was I interested in joining, to raise funds for autism services? My first reaction was: You must be joking. At the time I was tipping the scales at almost two hundred pounds, which was a lot for a woman whose pre-pregnancy weight had been 130 pounds. I had let myself go to seed following the birth of my younger son. Exercise was a four-letter word to me. I found it impossible to lift myself out of the post-partum depression I was still suffering from for long enough to walk to the mailbox and back. And now these people wanted me to run a race?

Two minutes… Will this race be the fruition of all my efforts? Or will it make me slink back into depression?

I deleted the email, but its contents pulled at a thread in my mind. I was in very bad shape, both mentally and physically. It was clear that I needed some impetus to get myself sorted out. Could this be it? Did I finally have the right reason to get up and do something? Would this venture even be possible?

One and a half minutes… Will I have the strength to go the distance? Or will I give up and not finish the race?

I recovered the email from my Deleted Items folder. If I decided to join the team, I could choose a distance. I ruled out the marathon – it would definitely be too much. I considered the 5 kilometre run, but somehow this did not seem to be enough. If I was actually going to do this, I wanted it to be a real challenge. I’ve never been one for doing things in moderation. Either I don’t do it at all, or I go all out. Abruptly, I checked my thinking. Was I seriously thinking of attempting the half-marathon? Was I crazy?

One minute… Will this endeavour cement my newfound love of running? Or will it make me toss my running shoes into the back of the closet forever?

My thoughts drifted to my older son. My beautiful boy with autism, so loving and full of promise. He could go so far and accomplish so much, but he would need help along the way. He would need services and social supports and programs, all of which cost money. The autism centre was hoping to raise funds to finance exactly the kinds of programs that are needed by kids with autism. I could be doing this for my son.

Thirty seconds… Do we proactively give our kids the best possible chances to overcome their challenges? Or do we just sit back and hope for the best?

Just like that, the thread in my mind – the one that the email had been gently pulling at – unravelled. I knew what I had to do. I pulled out my calendar and looked up a few online training programs. I worked out that in six months, I just about had time to train for a half-marathon. I signed up and got to work. And now here I was at the start line, fifty pounds lighter, and although not exactly fleet of foot, at least capable of running for a couple of hours.

The starter’s siren goes off and the crowd surges forward. As I cross the start line, I put a picture of my son in my head and run from the heart.

(Postscript: I finished that first half-marathon in almost two and a half hours. I remember the lump in my throat as I crossed the finish line and the tears that sprang to my eyes when I received my finisher’s medal. Every step of that race was dedicated to my son. Since then, I have done two more half-marathons for autism, and this year I will be doing it again. In my three autism runs to date, I have raised about $1500 for the Geneva Centre for Autism. My sons – the child with autism and his loving, caring brother – are my inspiration. I would run to the ends of the earth for them.)

For the IndieInk Writing Challenge this week, Shauntelle challenged me with "Write a story that begins "Three minutes. Will it begin? Or end?"" and I challenged Head Ant with "Write a story that includes the following: a dreamcatcher; red high-heeled boots; a broken wine glass."

Filed Under: autism, Autism Services, fundraising, Indie Ink Writing Challenge, running, Running for Autism Tagged With: , , , ,
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10 Useful Skills For Autism Parents

January 23, 2012 By

Autism parents frequently have to do things that other parents don’t. Our kids are so different, what with their limited communication skills, their sensory challenges, and at times, their superhuman physical strength. It is impossible to parent a child with autism in the same way you would parent a typical child (which means that when you have both an autie and a typical child you have to adopt two different parenting styles, but that’s another post for another day).

In the beginning, it’s hard, knowing what to do. And in a way, it never really gets any easier. But there are things I have learned from experience, that are now second nature. Here are ten of my favourites.

  1. Drywall repair. Many auties, my son included, are headbangers. They may bang their heads out of anger or frustration, or simply to get attention. And then they bang their heads, they don’t mess around. They give the wall a good solid WHUMP that’s enough to make the room shake. The drywall invariably takes some punishment. The inside of my house looks a bit like a pitted golf ball, and there are places where the impact of my son’s head has caused actual holes – big, gaping holes.
  2. Mixed Martial Arts. My husband likes to watch Ultimate Fighter on TV, and although I don’t watch it myself, I have absorbed some of it through osmosis. This has proved invaluable in times when my son has had a meltdown. When most kids have meltdowns, they simply lose their tempers. When auties have meltdowns, they thrash on the floor, bash their heads on the closest hard surface, and can risk hurting themselves quite badly. Even as they are kicking and screaming, they have to be kept safe. Hence the MMA skills. I have become quite the expert at using my bodyweight to restrain my son from hurting himself. The difference between me and the Ultimate Fighter guys, of course, is that I try to avoid causing pain, I don’t get paid big money for my efforts, and I have a mental age that’s higher than my shoe size.
  3. Dishwasher Racing. My son hates – and I mean hates – for the dishwasher to be open. Anytime I have to unload it and repack it, I have to deal with this kid repeatedly – and with increasing volume – telling me to close the dishwasher. He plants his bum on the kitchen floor, right in front of the sink, so I cannot get to the dishes. Sometimes I actually have to slide him out of the way. I have taken to setting the oven timer whenever I start doing dishwasher stuff, and the idea that he can visually see how long it will take does seem to soothe him. But God help me if the dishwasher is not packed, closed and switched on by the time the timer expires.
  4. Stealth Hair Cutting. My son, like many other kids, dislikes haircuts. But he doesn’t dislike haircuts in the same way most other kids dislike haircuts. He dislikes haircuts in the same way most people dislike having a kidney forcibly removed while fully conscious and able to feel pain. Rather than risk traumatizing my child, I give him haircuts while he is sleeping. This involves a lot of patience, as I have to wait until he is very asleep. If he’s not asleep enough, he will wake up as soon as I touch his hair and he will scream loudly enough to startle the llamas in Peru. I have to creep around in the dark like a burglar, and sometimes it takes several nights to get the job done.
  5. Mediation. OK, this is a skill that any parent with more than one child has to learn. But when one child has autism and the other doesn’t, you have to raise your mediation skills to a whole new level. It’s a bit like trying to sort out a dispute between one person who only speaks Zulu and another person who only speaks Icelandic, when you only speak Pig Latin.
  6. Jumping Through Hoops Of Fire That Are Constantly Moving. OK, that may be a slight exaggeration. But dealing with school boards can really feel that way when special needs concerns are brought into the mix. I am getting really good at making suggestions to teachers and therapists that are phrased in a way that makes it sound like it was their idea. If it gets what my son needs, I really don’t care who gets the credit for it.
  7. Improv. If I had a dollar for every time a random stranger made a stupid remark about my son needing “a good hiding” or “proper discipline”, I’d have enough for a five-star trip to New Zealand, including flights, hotels, meals, and a Lord Of The Rings tour. I have learned the art of the Quick Comeback. If someone is being rude and intrusive while my son is having a hard time, I am no longer shy about saying things like, “My child has autism – what’s your excuse?”
  8. Distraction. This is a concept that most autism parents are well aware of. Sometimes I can just tell that a meltdown is just around the corner, and I want to do everything in my power to head it off at the pass. I get favoured activities or treats within arms’ reach, try to stop or somehow control whatever is winding him up, talk to him, sing to him, throw out mental arithmetic problems at him (the kid’s like Baby Rain Man with numbers – what can I say?) I have about fifty-fifty success with my efforts – but I will take that over ninety-ten in favour of the meltdown.
  9. Planning for Change. If there’s one word that makes autism parents everywhere tremble with fear, it’s change. Our kids don’t do well with change. They like the same places, the same people, the same routines. When we go on vacations, we have to take most of our family’s belongings with us so that we can replicate our home environment as closely as possible. Every summer, we put together social stories in preparation for the new school year, that include pictures of the new teacher and classroom, and we take our son to the school so he can get used to – or stay used to – playing in the playground there. I contingency-planned my wedding like it was going out of style – and all of those efforts paid off.
  10. Appreciating the Little Things. Where an autism parent is concerned, there is no such thing as a small accomplishment. All achievements, ranging from new words added to the vocabulary to giant cognitive leaps, are causes for celebration. As the parent of a child with autism, I have really learned how to smell the roses. Life is full of challenges for me and my family. But every single day is a blessing, and every single night, when I kiss my children goodnight, I am grateful for the people they are. And no matter how hard the day has been, I feel like the richest person on the planet.
Filed Under: autism, Children, life, parenting, Special Needs Tagged With: , , , , , ,
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Autism Diagnosis: Changing The Landscape

January 13, 2012 By

For the benefit of people who are not involved with autism, I will start today’s post with a brief primer on what an autism diagnosis actually means. People who are affected by autism and already know this stuff, bear with me.

Most medical conditions are stated in absolute terms, based on whether they are present or not. Think of pneumonia, Downs Syndrome, or meningitis, to name just a few. The severity of symptoms may vary from person to person, but that does not change the diagnosis.

Autism is a spectrum disorder, and where the individual falls on the spectrum can determine his or her diagnosis. One of the more common autism rating scales is called CARS, or Childhood Autism Rating Scale. For diagnostic purposes, anyone who scores over 15 on CARS is regarded to have an autism disorder. The lower numbers – from 15 to about 25 -  will result in a more specific diagnosis of Aspergers – what some call “high functioning autism” (the use of this term is highly contentious). At the other end of the scale, from about 40 to the upper limit of 65, there are people who receive a diagnosis of autism. And in the middle are the people who are diagnosed with something called PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).

Although people in all three groups are deemed to have ASD (Autism Spectrum Disorder), the specific diagnosis – and therefore the services they receive – will depend on where they fall on the spectrum. It is worth noting that a child may, over the course of his or her life, be diagnosed with all of three things at one point or another. My own son, for instance, was initially diagnosed with autism. His current clinical diagnosis is PDD-NOS.

Primer over. Now I will get to the point of today’s post.

Now, the diagnostic criteria for autism disorders could be changing, and these changes could have some far-reaching effects on the services that are received by individuals who are on the spectrum. Whether the changes would be good or bad is a matter up for debate.

According to the proposed criteria laid out in DSM-V (Diagnostic & Statistical Manual of mental disorders), there will no longer be individual diagnoses of Aspergers, PDD-NOS and autism. Instead, everyone on the spectrum will get a clinical diagnosis of ASD.

This can be good. In the current diagnostic world of DSM-IV, many people on the spectrum do not get the services they need because they are deemed to be “high-functioning”. With a common diagnosis for everyone, the world of services could be opened up to a host of people who have previously not benefited from it.

But.

Let’s take a look at how the actual diagnostic criteria themselves may be changing.

In DSM-IV – the world as we know it today – a total of twelve symptoms are divided into three groups:

  1. Qualitative impairment in social interaction.
  2. Qualitative impairment in communication.
  3. Restricted repetitive and stereotyped patterns of behaviour, interests and activities.

The individual has to display at least six symptoms, with at least two from the first group, and one each from the second and third groups. If this condition is met, along with a couple of other factors, you have your diagnosis – whether it’s Aspergers, PDD-NOS or autism.

The proposed DSM-V has the following stipulations, all of which must be met:

  1. Persistent deficits in social communication and social interaction across contexts. Individuals must display all of three symptoms that are worded in very specific terms.
  2. Restricted, repetitive patterns of behaviour, interests or activities. Individuals must display two of four symptoms that again, are very specifically worded.
  3. Symptoms must be present in early childhood.
  4. Symptoms together limit and impair everyday functioning.

The groupings of symptoms, in conjunction with the way in which they are worded, means that it will be more difficult to get an ASD diagnosis, particularly for individuals on the “Aspergers” end of the spectrum. There is a segment of the ASD population who are regarded as “high-functioning” relative to people more severely affected by autism. These people may not meet all of the criteria laid out in DSM-V.

What this means is that although the actual incidence of autism will continue to climb, we may see a decline in actual diagnoses. The general public will be misled into believing that the autism epidemic is being brought under control.

And a host of people who need services could be denied them, simply because they don’t meet the right combination of conditions listed in a manual.

It is important to note that the DSM-V is, at this stage, a draft. It will in all likelihood pass through a host of revisions based on feedback and testing. The DSM-V that is ultimately released could look very different to what is discussed here.

It will be interesting to see if, and how, the autism diagnostic landscape will change.

Filed Under: Aspergers Syndrome, autism, Autism Diagnosis, Autism Services, DSM-IV, DSM-V, PDD-NOS Tagged With: , , , , , , ,
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Autism Diagnosis: Blessing, Curse, or Both?

January 12, 2012 By

Receiving my older son’s autism diagnosis four and a half years ago was both a blessing and a curse. On the one hand, this diagnosis meant that there was something wrong with my son. I had known this for a long time, of course, but having it told to me officially meant that I could no longer hide behind the cloak of denial. I had to face the fact that my child had a developmental disability that would, in all likelihood, affect him for the rest of his life.

On the other hand, though, having the diagnosis meant that we could now get our son the help that he needed. Instead of having a vague sense that there was “something wrong”, we had a name for his condition. We had something to Google, we learned what services to seek, and we entered the labyrinthine world of special needs funding. Although we were devastated, having the diagnosis did make us feel a little more empowered.

About two years later, I stumbled upon an Internet support group for parents of children with autism. This group was not designed to diagnose, or debate, or judge. It’s primary purpose was – indeed, is – to give parents a safe place to talk about the daily challenges of autism, to vent about whatever was bugging them, and to freely utter the phrase, “Autism is bullshit” without having someone jump down their throat.

This group has turned out to be an invaluable resource for me. I have made friends there. I have been able to give and receive advice. I have come to appreciate that in the autism world, there are children both better off and worse off than my son. I have been allowed to express hope and despair, I have been able to laugh and cry.

And I have been able to learn. Through the experiences of other people, I have been able to develop some strategies to help myself, my son and my family. I have come to have a better understanding of what role my younger (neurotypical) son can play in his brother’s life. I have realized that even the strongest of marriages can be strained by the presence of special needs, and I have learned some ways to deal with that. I have learned about how different things are in the United States vs. Canada where autism services are concerned.

I have learned about the difficulties some parents experience, first when it comes to getting a diagnosis for their children, and secondly, when it comes to getting and retaining services. And just this week, I have learned that all of this may be about to change under the new DSM-V diagnostic criteria. Whether it changes for the better or for the worse is an opinion still up for grabs.

Tomorrow: how will the autism diagnosis change, and what does it mean?

Filed Under: autism, Autism Diagnosis, Autism Friendships, Autism Services, Developmental Delay, Doctor, Learning Disability, Special Needs, Support Groups Tagged With: , , , , , ,
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Autistic Is Better Than Dead: Guest Post by Sara Morgan

January 3, 2012 By

Two years ago, my husband’s cousin lost his 20-year-old son to cancer. At the funeral, I kept myself together reasonably well until I saw the friends of the deceased enter the church. I remember thinking that this – the loss of a friend – is not something that any college student should have to deal with. And later, in the cemetery, I saw the bereaved mother standing there bravely, clutching the teddy-bear her son had had as a child. The overriding thought in my mind as I watched a mother and father burying their child was, “Thank God all my child has is autism.”

Today’s post, from Sara Morgan, expresses the same sentiment. Sara and I have two things in common: we are both autism parents, and we are both moms of angel babies who never got to live. In this heartfelt post, Sara reminds us that where there is life, there is hope.

As a mom of a child with Autism ( and one Highly suspected of having Aspergers, but that’s it’s own rant) I seem to get a lot pity, or compassion, or…I’m not always sure what to call it…. thrown at me.Like I’m some sort of saint for not thowing my child in the dumpster because of his Autism. I’m not brave, or special really in any sort of way except that I’ve come to the conclusion that Autistic is better than Dead.

When people see me walking on the street they see me and my 3 children,Faith, Alexia & Gabriel. What they do not see is the 3 I carry in my heart. Angel, Devan & Jeremiah….who would have been Gabriel’s twin. Pregnancy loss has long been a taboo subject, and I have fought hard to keep thier memories alive…how they died doesn’t matter near as much as that they once LIVED. That they will continue to live on in our hearts and our memories, that I will share them with thier siblings, even Gabriel with his autism and his limited understanding will know someone was in there with you….and he has a name, and a place in this family as do all his siblings.

Autism can really be it’s own depresing journey, it has it’s own grieving process, just as losing a child does…..It has the ups, the downs. The times you just want to throw yourself on the floor right along with your child and scream “WHY ME?” At the end of the day I can hold myself together because in the long run, he’s still HERE……I can do Autism…..Autism is Better than DEAD any day of the week….we can work with this! Autism will always be a debilitating condition,My son will always stuggle….but there is nothing more debilitating…more final…than the death of your child, anything else has possibilities.

I have Grown so much since I started these journeys, both as a bereaved mother, and as an autism mom. Don’t look at me with pity, Heck don’t even look at me with pride because I’m doing exactly what anyone in my position would do….I’m picking up the pieces and trying to put them back together and move on the best I can…and that my friends is all any of us can do.

(Photo credit: Sara Morgan)

Filed Under: autism, Children, Death, parenting, Pregnancy Loss, Sara Morgan Tagged With: , , , , , ,
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2011 – My Year In A Nutshell

December 27, 2011 By

January 2011

I start off the year on a good note. Tired and slightly hungover, I take part in the Resolution Run on New Years Day. With my wedding just four months away, I start to stress about the little details, like where to get married and where to hold the reception.

This month, I also donate blood for the first time  – at least, the first successful time. My inspiration is baby David, affectionately known as Captain Snuggles. Sadly, David dies just days later, at just 8 months old.

 

February 2011

We have a wedding venue and a minister! I will be getting married in the same church where both of my children were baptized into the Christian cult fellowship. My running has slowed down a little, because the stress of wedding planning has made me sick.

March 2011

We have a venue for our wedding reception! We almost booked the first place we looked at, but then we went to see the hall at the Royal Canadian Legion. They initially had the hall booked for our wedding day, but the other people have graciously agreed to move their event to the previous weekend. This means two things. First, we get to have our reception in a place that supports the veterans. And second, we now have all of the information we need to send out our wedding invitations.

This month is frantically busy. We have left most of our wedding planning to the last minute, so we have to book our DJ, our flowers, get a cake sorted, find someone to do my hair and makeup, and so much more.

April 2011

My wedding is on the last day of this month! Most things are organized, but my hairdresser and my makeup person have both bailed on me. While I dissolve into tears, my fiancé gets into the car and goes out for a drive. When he comes back, he tells me that the hair and makeup problem is all sorted out.

My soon-to-be brother-in-law introduces me to a wonderful lady, who agrees to be in charge of both of my boys for the day of the wedding. This is a very big deal for me. I worry about how my son with autism will cope with such a big day.

The big day arrives, and it goes perfectly! My hair and makeup look lovely, and the dress – made by my mother-in-law – is perfect. I marry the man I love, and everyone has a lovely time, including the kids.

May 2011

I spend time with my Mom, who has come for the wedding. We go shopping, we go for drives, we spend time with the kids, we chat and drink wine. It’s wonderful to have her with me.

One of the lowest lows of the year happens this month, with the unexpected death of our friend Ken, just days after our wedding. It is an honour to have had Ken and his wife at the wedding. It is good that we got to see him one last time. He will always be missed.

June 2011

My younger son James graduates from Kindergarten. I have a surreal kind of feeling as I watch my baby up there on stage, wearing his construction paper graduation cap, receiving his Kindergarten diploma. When he and his classmates start singing their songs, I just about die from the cuteness.

 

July 2011

I am having difficulty with my running. I struggle to find time, I am lacking motivation, and I am injured. I have missed the last two races I was registered for. On the plus side, the sporadic nature of my recent training does not appear to have affected my speed. There has not been any improvement in my performance, but there hasn’t been a noticeable decline either. This may not seem like a big deal, but when you’re struggling with something you usually love, you have to take what you can get.

August 2011

2011-08-25 11.19.19This month turns out to be unexpectedly busy. The big news is that my older son George graduates from his provincially funded autism intervention program. He has had two years of IBI followed by a year of the school stream program. His progress has been off the charts. He is ready for this graduation. I, on the other hand, am not. It represents a growing-up that I am just not ready for.

Things seem to be looking up with my running! I run two races this month, just a couple of weeks apart. My performance in the first isn’t great, but in the second, I do a lot better than expected.

September 2011

George turns 8, and I’m not really sure how this has happened. It seems like just yesterday that I held my tiny baby in my arms for the first time, and now he’s this long lanky boy who keeps growing out of his shoes.

My 2011 Run for Autism is three weeks away. I run a 10km race at the zoo and make a personal best time. The following morning, I go out for a long run in foul weather, and the day after that, I can barely walk. I feel good, though. I feel ready for the half-marathon.

October 2011

75738-1975-025f[1]The day has finally arrived: the race I have been training for all year. This is the reason I run – to raise funds for autism services, to make the world a better place for children and youth with autism and their families. I dedicate this race to my son George: my joy and my inspiration. If he can live every day with the challenges of autism, I can run a two-hour race.

It goes really, really well. I get a personal best time for the half-marathon and beat the 2:20:00 target that I’ve set for myself. What makes this day even more amazing is that I have done really well with my fundraising for this race, surpassing my combined total for the previous two years.

November 2011

I am insanely busy at work. I am on four projects, and I am also in charge of the month-end reporting for all of the projects in my department’s portfolio. I am enjoying the additional challenge that this gives me, and every month I am getting better at it.

I feel like I am starting to gain some traction in my writing. It is hard work, building up a blog following, and it’s an ongoing process. I am becoming quite prolific, though. I have my blog, I write for an ezine, I write for a project called World Moms Blog, that is growing very fast. I have been voted as one of the top 25 Canadian mom blogs, and people are starting to ask me to guest post for them. I have also resurrected the novel I started working on a couple of years ago.

I run another race at the end of the month, and demolish my previous personal best time. If I can do this after the difficult season I’ve had, what will I be capable of if I actually train? I ask my running friend Phaedra to be my coach for next year, and she agrees.

December 2011

As usual, my Christmas preparations are a last-minute frantic rush. Somehow, I get my shopping done on time and the day is a big success. We all weather the festive season with life and limb intact. It is a hard time for George, with all of the sounds and lights and people and busy-ness, but he gets through it.

On Christmas Day, James turns six. I feel a little weepy over the fact that my baby is no longer a baby. There is just something about the transition from 5 to 6.

Also on Christmas Day, I somehow manage to pinch a nerve in my back. It’s eerily reminiscent of 2 years ago, when the same thing happened. The incident in 2009 puts me out of action for two months, and I really hope this does not happen again.

The story continues in 2012. What script will I write for my life in the coming year?

Filed Under: 2011 Year In Reviw, autism, Children, Death, fundraising, IBI, life, Race, Running for Autism Tagged With: , , , , , , ,
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Campbell: A Story Of Kindness

December 15, 2011 By

Tazz and Campbell

Once upon a time, I had a child and called him George. I had all kinds of hopes and dreams for that child. We were going to  take him on the kinds of outings kids love, and for his birthdays, we’d invite his friends to come too. We would delight in watching him grow from babyhood to childhood as he ran and jumped and played with his peers; we would laugh at the funny things he said as he was learning to talk; he would make cookies with me and we’d go for picnics at the zoo. When he became a big brother he would take pride in helping with the baby.

One day, when George was almost four, the hopes and dreams crumbled as a doctor gave me the news that George had autism. As I sat there in shock (strange really, since I’d known for a year that something was wrong) I did not yet know that at some point in the future, I would come to accept a new kind of “normal”, that my hopes and dreams would take on a different, but still meaningful form, and that while the journey would take us on the scenic route, we would still see many wonderful things along the way.

It hasn’t all been a cakewalk. There have been hard times. I have had to learn how to restrain my son with my bodyweight to stop him from hurting himself. Speech is still sporadic enough that we celebrate every single word, every single sentence. It saddens us that George does not have friends, preferring to play by himself.

One of the hardest things to deal with has been the reactions of other people. We get rude stares in grocery stores, and complete strangers tell us that what our child needs is “a good hiding”. When people see George having difficulty in a public place, they jump to the immediate conclusion that he is misbehaving. Don’t get me wrong – sometimes he is. He may have autism, but let’s face it – an eight-year-old boy is an eight-year-old boy. Most times, though, George is having trouble with the brightness of the florescent lighting, or the overabundance of sounds, or all of the conversations going on around him that he does not know how to filter.

I sometimes wish for a magical potion, a Perfume of Arabia that I could sprinkle onto people to open their eyes and help them understand.

In the absence of a Perfume of Arabia, the best I can do is write about my experiences and hope that it will make a difference to someone’s life. Like it did to a reader, Tazz, who along with her dog Campbell, had an incredible encounter with a special needs child. With Tazz’s permission, I am sharing the story here. I’m not even going to bother rewording it. Tazz’s words can speak very well for themselves.

“One thing I learned is to never ever judge what I see a child doing, because for all I know there may be a problem I do not know about. Turns out this info came in very handy for me not long ago. There is a family who are members of the church I am currently attending part time. Their son has some kind of a problem that they have not quite diagnosed yet. However, it causes him to sometimes have horrible meltdowns. I was walking down the hall one day during Sunday School time going back to class from the bathroom when from a room down the hall a ways I heard the most heartbreaking crying I ever heard, and knew it was this little boy having another hard time. His mother was doing all she could to calm the child. I followed my heart and took a chance. I softly knocked on the door, and asked if I could help. She had come to the door with the melting down child in her arms, and when he saw Campbell his screaming stopped. I mean like turning off a switch. I asked if I could bring Campbell in and visit for a minute. She agreed and we all sat on the floor with the little boy calming down and petting Campbell. They are now looking in to the possibility of getting a therapy dog for this child. Campbell has come to rescue this child a couple more times since that day. Because now if we are there, and this child starts to have a problem they come and get me from where ever I am and I happily go and help. Well, Campbell helps.”

Is this not the most amazing story? Tazz had an instinct and she followed it. She and her dog were exactly what that little boy and his Mom needed. We special needs parents all need people like this – people who don’t necessarily know the circumstances, but who open their hearts to people who really need it.

To Tazz and all of the people like her, thank you. Thank you for being there. Thank you for being you. You restore my faith in the goodness of human nature.

This week’s Indie Ink Challenge came from Head Ant, who gave me this prompt: What would your proverbial “perfumes of Arabia” take care of? Fiction or non-fiction.
I challenged lisa with the prompt: Write about anything you like, but include the following: cotton candy, a dog, and a broken-down taxi.

Photo credit to Tazz. This picture was taken at an event to remember the victims of domestic violence.

Filed Under: autism, Dogs, Empathy, Helping, Indie Ink Writing Challenge, Special Moment, Special Needs Tagged With: , , , , , , , ,
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Princess

December 12, 2011 By

On Saturday night, me and my husband went to the annual Christmas gala put on by my employers. While I always get excited about the prospect of going out for a meal at a place that does not supply paper menus and crayons, there is always a bit of angst involved in the preparation.

For a start, we have to arrange childcare and hope that the almost-six-year-old drama queen won’t have a hissy fit when he discovers that we’re going out without him. When we fail to find childcare because it’s the Christmas season and apparently, baby-sitters have lives too, we have to hope that the kids won’t tie their elderly grandmother and great-aunt to a pole and dance around them waving sticks and chanting ominously.

Once the kids are sorted out, we move on to the more difficult question, one that has plagued women all over the world since the very beginning of time.

What do I wear?

Where shopping is concerned, my philosophy is this: Why put off until tomorrow what you can do the following day? In that vein, I went shopping for my dress at lunchtime on Friday, one day before the event. And yes, I had to get a new dress. No, I couldn’t wear something already in my wardrobe. My clothing size has changed so many times over the years, in both directions, that I don’t actually have anything that fits. So, off the store I went, fully expecting that as usual, I would have to settle for something I didn’t really like. The perils of being a habitual last-minute shopper. Someday I’ll learn. Maybe. Probably not.

Anyway, the shopping expedition went a lot better than expected. As soon as I walked into the store, I saw a chocolate brown creation that looked very nice. I never thought chocolate brown was really my colour, but some intuition told me to give it a try. By some miracle, they actually had the dress in my size. I picked out a couple of other dresses to try on just in case the chocolate brown one didn’t work out, and I retreated into the change room. I briefly wavered between the chocolate brown dress and a red one, but in the end I went for my initial instinct. Apart from the fact that the brown looked better, I already had shoes that would go with it. I wasn’t wild about the idea of dropping over a hundred bucks on a pair of shoes that would shred my feet by the time dessert was being served.

Fast forward to Saturday afternoon, when we were getting ready to go. My makeup was applied and my hair was as done as it was ever going to be. The husband was off putting on his glad rags, and all I had to do was put the dress on. As I slipped it over my head, my eight-year-old son – so sweet and innocent in his autism – wandered in. He tentatively touched the shiny fabric and smiled. And then – to my astonishment – he started helping me accessorize. He grabbed my shoes and helped me put them on. He dug around in my dresser and came up with the necklace I wore with my wedding dress. He handed it to me and said, “Put the necklace on, Mommy.” It wasn’t the necklace I had been planning on wearing, but when your mostly non-verbal autistic child gives you a full, appropriate-to-the-circumstances sentence, you don’t sneeze at it. I put the necklace on, and would you believe it, the kid was right! The necklace looked way better than what I had been planning on.

My little fashion diva stepped back to survey his handiwork. He gazed at me and said a single word: Princess.

We had a great night. The food was good, we had very nice people at our table, we danced and partied and had fun. The dress was a hit, and my some miracle, it was even comfortable. There are many moments of the evening that I smile about as I relive them. Walking into the ballroom hand-in-hand with my husband. The many laughs we shared with the people at our table. The outstanding wine and the food that was so pretty I almost didn’t want to eat it.

But in the end, there is one memory of the evening that I hold close to my heart, that warms me from the inside every time I think about it.

My beautiful son, looking at me with those big blue eyes, calling me a princess.

At moments like that, my cup overfloweth.

Filed Under: autism, Clothes, dress shopping, Gala dinner, Occasion, Princess Tagged With: , , , , , , , ,
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Twitter Tuesday: #youmightbeanautismparentif

November 22, 2011 By

On Sunday evening I was wandering around in Twitterland seeing if anything interesting was going on, and I noticed a certain hashtag popping up in my timeline not once, not twice, but many time. For those who are not Twitterites like me, a hashtag is a topic that people are Tweeting about – kind of like a conversation. So if you’re tweeting about broccoli (and really, who would tweet about broccoli?) you would add the following to your tweet: #broccoli.

Anyway, the hashtag that was appearing on Sunday night was this: #youmightbeanautismparentif.

Well, this looked like fun! Autism parents were tweeting about some aspects of raising a child on the spectrum. Some of the tweets were poignant, some were downright hilarious, and every single one of them was true. So I thought I would share some with you. What follows is a sampling. To get the full picture, go to Twitter and search for the hashtag #youmightbeanautismparentif.

So here goes. You might be an autism parent if:

  • you start to write your coworkers a social story about why they shouldn’t use your stapler (@BartimusPrime1)
  • Your child is self-taught on both a PC & a MAC, preferring to operate both simultaneously (@theblondeview)
  • You celebrated and took a pic the first time your daughter drew on a wall. (@NationalAutism)
  • you know there are TOO MANY ways to end the sentence, “The bathroom is NOT a good place to…” (@FroggyPrinceMom)
  • you wouldn’t change your child for the world- but want often to change the World for your child (@helenhamill)
  • you have a swing. In the middle of your living room. (@RaisingASDKids)
  • one moment, you feel completely alone & the next, you’re a part of a large, passionate & supportive community. (@autismfather)
  • you are happy when your child gets in age appropriate trouble (@RaisingASDKids)
  • you constantly praise your kid for NOT peeing down the air vent (@laughinblues)
  • your kid just dropped a grape and now the ENTIRE day is ruined. (@WhacamoleLife)
  • your child is offended that Robin Hood called a big man “Little John” because that’s a lie. (@BobbiSheahan)
  • the Christmas Nativity scene on the mantle includes dozens of animals facing the same direction. (@LeftCoastJeff)

I made my own contributions to this thread. Here are a few of them. You might be an autism parent if:

  • your kid screams the roof off because the letter M on his computer keyboard broke.
  • you’ve ever had to defend your vaccination choices to complete strangers.
  • the dishwasher ALWAYS has to be closed and the living room door ALWAYS has to be open exactly 3.26384 inches.
  • cutting the cheese sandwich into triangles instead of squares starts World War III.

What do you think? Feel free to add to the list in the comments, or join the Twitter conversation and be sure to follow me @running4autism.

Filed Under: autism, Humour, life, Twitter Tagged With: , , , , , ,
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