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Book Review: Grace, Under Pressure (Sophie Walker)

October 28, 2013 By

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Being the parent of a child with autism can be a very lonely experience. Discovering that your child has a lifelong disability is a bit like being catapulted from your life into a kind of parallel universe where you don’t know what any of the rules are. You have to navigate the confusing maze of government funding and services, and at times you – and your child – are at the mercy of the whims and moods of the people who make decisions about what supports your child might qualify for.

As you wander helplessly in your parallel universe, not knowing where to turn, you might suddenly feel a hand in yours. Sometimes it will be a hand that gently guides you in the right direction. Sometimes, it will be a hand that reassures you, that lets you know you are not alone, that there are others in this same parallel universe who know what you are going through.

Reading Grace, Under Pressure by Sophie Walker had that effect on me. I started reading the book during a time when life seemed to be conspiring against me, and as I immersed myself in the story, I felt as if the author had taken my hand to keep me company through this journey.

Sophie’s life and mine have some strong parallels. Like me, she is the parent of a child on the autism spectrum, and running has been a salvation for her just like it has for me. Both of us run to raise funds for autism, and both of us live with the challenges of parenting a neurotypical child alongside a child with special needs.

In Grace, Under Pressure, Sophie tells the story of her life with her daughter Grace, who has Asperger’s Syndrome. Through wonderfully crafted narrative, we are taken through Grace’s early childhood, the struggle for answers and support, and Sophie’s evolution as a marathon runner. We get a balanced look at the ups and downs of special needs parenting, and the blood, sweat and tears of distance running. We see the laughter, the tears, the desperation, and the gut-wrenching relief when the light at the end of the tunnel finally comes into view.

This is a book about so many things. It is about a brave, bright little girl finding her way in a world in which she is different. It is about the unwavering dedication of a mother to her child. It is about the perseverance of an athlete striving to reach new heights.

Above all, it is about courage and inspiration, and the idea that no matter what, we should never give up hope.

Sophie WalkerAbout the author: Sophie Walker has been a journalist for over 15 years, reporting on events in such places as London, Iraq and Afghanistan. She lives in London with her husband and two daughters.

For more information about Sophie Walker and Grace, Under Pressure, please visit http://authorsophiewalker.com/home.

Many thanks to New World Library for providing me with a review copy of Grace, Under Pressure. All opinions expressed in this post are my own.

Filed Under: Aspergers Syndrome, autism, Book review, parenting, running, Sophie Walker, Under Pressure Tagged With: , , , , , , , , , ,
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Autism And The Ontario Teacher Dispute

January 10, 2013 By

Going back to school after a two-week vacation is hard, especially for a child with autism whose routines have been completely turned upside-down by unaccustomed time at home, unaccustomed time in a hotel, and the whole Christmas ordeal.

This week has been rough for both of my kids, particularly my firstborn. George reacts to changes in his routine by not sleeping, which means I haven’t had anything remotely approaching a good night’s sleep since before Christmas. Now that the kids are back at school, and familiar rituals and schedules have resumed, the sleep issues are slowly but surely diminishing. Usually it takes a couple of weeks for the status quo to fully return.

This time round, though, there are a couple of wrinkles that are likely to hamper our return to our own odd version of normality. One of the wrinkles is actually a very positive one: for the next few Wednesdays, George will be attending a social skills program after school.

On the one hand, he gets to go to the therapy centre that was his home-away-from-home for three years. It’s a place he knows and loves, and the program is one that he desperately needs.

On the other hand, he has not set foot in the therapy centre since he was discharged 15 months ago. It is no longer a part of his daily life, and going there is a big change for him. As disruptive as that is for now, his participation in the program represents progress, and we are excited to see where this might take him.

The other wrinkle is a little more contentious in nature. For those not living in Ontario, here’s the short version of the story:

Last year the Premier of Ontario introduced legislation that would have the effect of screwing over the teachers. The teachers’ unions got involved and tried to negotiate a better deal. The inevitable happened – things went nowhere fast and the unions recommended a course of protest action for the teachers.

In December, there was a series of one-day walkouts staged by school boards across the province. By then, pre-Christmas stuff had already started to throw the routines off, so this didn’t really bother us. The biggest effect was that James’ Christmas concert had to be rescheduled to a date that was impossible for me (oh, the guilt!).

The one-day walkouts failed to have the desired effect, and now the teachers are not in a legal position to strike. They can, however, stage a one-day protest (although to be honest, I’m not clear about the difference between the two), and this is exactly what they are planning to do tomorrow.

Looking at the issues alone, my sympathies are with the teachers. They are entrusted with the task of shaping futures, and they deserve some respect. My opinion is kind of moot anyway: regardless of who’s right or wrong, the teachers have to do whatever the unions tell them to.

But speaking as a special needs parent, I have to say that I am kind of miffed at this latest development. At a time when I am trying to get George settled into the flow of a routine that’s already different, an unplanned three-day weekend really throws a monkey-wrench into the works.

That there are issues to be resolved is beyond question. I just wish this could be done in a way that does not impact the kids. I can handle the inconvenience of having adjust our family’s schedule to accommodate the kids not going to school for a day. I can live with them missing out on one day of instruction. In the grand scheme of their educations, a single day is not going to make much difference.

What I find hard to swallow, though, is the fact that special needs kids like George are going to endure an extra dose of stress and anxiety because of this.

I’m not sure what the solution is, but I cannot help thinking that there has to be a way to avoid making children bear the brunt of grown-up problems.

(Photo credit: Pylon757. This picture has a creative commons attribution license.)

Filed Under: Ontario, Politics, School, Teacher, Teacher Strikes Tagged With: , , , , , ,
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Open Letter to Ann Coulter

October 23, 2012 By

Dear Ann Coulter,

Before I get to the point of this letter, I want to get some preliminaries out of the way.

I don’t agree with your political views, and I don’t like the way you present them. I find you to be offensive and abrasive, and generally disrespectful to your fellow man – even those who check the same name you do in the ballot box.

This is not about politics, though. While I have been kind-of following the US presidential campaign, I don’t have a stake in it. I do not live in the United States, and the outcome of the election will not affect me in my day to life. I am just a Canadian mom muddling through life as best I can, striving for the happiness and wellbeing of the two children I have had the honour of bringing into this world.

I have many of the typical modern-day mom challenges. My boys keep me busy, I spend too much time commuting so that I can work full-time to provide for my family, and my husband and I can barely squeak in any time for ourselves.

In some ways, though, I am not really typical, because both of my children need some extra help. My younger son is struggling with reading and writing. My older son has autism. They are both highly intelligent, you understand, but they have their challenges.

Ann, my older son – the one with autism – does not have any friends. He has been invited to exactly one birthday party in his whole life. He does not know how to play with other children, and when he comes home from school, he is not able to tell me what his day was like. He is different from other kids, and it is obvious.

But do you know what? Not once has any child said a mean word to my son. I realize that as he approaches his teenage years things may become more difficult for him, but until now, he has never experienced anything but tolerance, acceptance and kindness from other children.

No, the nastiness – the looks, the snide comments, the sniggers – have come from adults. It has been the so-called grown-ups who have shepherded their children to the other side of the playground. It has been the grown-ups who have smirked in the face of my son’s public meltdowns and told me that my child “needs a good hiding”. The grown-ups have been the ones to stare rudely at my son’s stimming while their own children have acted as if nothing out of the ordinary was happening.

Ann, the one time I heard someone refer to my child as a retard, guess who it was?

Yep, you got it in one. It was an ADULT. Someone who really should have known better.

Someone who freely uses words like “retard” without any care for how it might hurt other people.

Someone like you.

Do you know what connotations that word has for a special needs mom like me? Do you realize that you are tossing out a term designed to hurt and ostracize children like my son? Do you have any idea that this word is exactly what is stopping my son and thousands of others like him from being accepted as a valuable part of society?

Do you even care?

I’d like you to take a moment to look at the picture at the top of this letter. Really look at it. Look into the eyes of that sweet, innocent child, and then tell me if you feel good about being so insulting to him and doing your part to damage his chances of acceptance and happiness.

If you must trash-talk the presidential candidates, please do so without using words that are offensive and divisive.

Thank you.
Just another mom

Filed Under: Acceptance, autism, Insensitivity, Politics Tagged With: , , , , , , , ,
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2012 Run For Autism: Starting The Journey

June 10, 2012 By

Many of you already know the story.

You already know how I was a runner way back when, and then stopped and completely neglected my physical health after the birth of my kids. You know how I always wanted to get back into running, but never found the discipline. You know how I became completely comfortable as a couch potato but never quite got rid of that residue of regret.

You also know how an email landed in my inbox one day that completely changed everything. The email was an invitation for me to join the team being put together by the Geneva Centre for Autism for the forthcoming Scotiabank Toronto Waterfront races. Participants could run the 5K, half-marathon or marathon, and in the process raise funds for services for children and youth with autism.

It turned out to be just the motivation I needed. Within 24 hours I had made the transition from couch potato to speed demon extremely slow runner. Six months later, I had dropped almost sixty pounds and I was standing exhausted but triumphant at a half-marathon finish line, clutching my finishers medal and sobbing with emotion.

Here I sit, three years later, getting ready to embark on training and fundraising for my fourth Run for Autism. Since that first half-marathon in 2009, most of the weight has stayed off, my half-marathon time has improved by almost ten minutes, and I have raised over $2000 for the Geneva Centre for Autism.

This year’s race is on October 14th. My fundraising goal is a cool thousand dollars. This means that for the next four months, I will be shamelessly asking people for money – friends and family, complete strangers, and everyone in between. The money will go towards supplies and services for children and youth with autism. These are services that can provide skills that will last a lifetime, enabling people like my son George to lead happy, productive lives as fully integrated members of their communities.

Some examples of what $1000 can do are as follows:

  • Art supplies for 40 children and young adults
  • Sports equipment for 20 children and young adults
  • Musical instruments for 15 children and young adults
  • Job training for 15 young adults
  • Field trips for 10 children and young adults
  • Summer camp for 4 children and young adults
  • 2 iPads loaded with apps for individuals with autism
  • 1 piece of state-of-the-art sensory equipment

This list goes to show that every single cent really does make a difference. If you have the ability to, please consider sponsoring my Run for Autism and contributing to this incredible cause for my child and for other people with autism.

To donate, please visit my fundraising page.

It takes a very special kind of village to raise a child with special needs. Today, I invite you to be a part of my village.

(Photo credit: Brightroom Professional Event Photographers)

Filed Under: autism, Autism Services, Finish Line, fundraising, Geneva Centre for Autism, Half-Marathon, running, Running for Autism, Scotiabank Toronto Waterfront Races Tagged With: , , , , , , , , , , , ,
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Sticks And Stones And Words That Hurt

May 31, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Special needs parents come with all kinds of super-powers, one of them being the ability to grow a thick skin. This is a necessary part of survival: without it, we would not be able to withstand the stares from strangers during public meltdowns, the judgmental comments that are designed to make us feel like bad parents, and the mothers who steer their children away from our kids in the park, as if autism were contagious.

These things never really stop hurting. They never fail to make our hearts ache for our beautiful children who through no fault of their own, are targets of ostracism and discrimination. As we grow into our roles as special needs parents, though, we learn coping skills. We come up with ways to shield our children from the hurt, and to let the strangers know that our kids have a place in this world, differences and all.

We learn how to accept that the blatant looks and rude comments are not a reflection on us as parents. They are a reflection of the ignorance and prejudice in other people.

But.

No matter where we are in our special needs parenting journey, nothing can prepare us for the first time someone maliciously refers to our children as “retarded”.

Although this word was originally used in a medical sense, it is now generally regarded as a derogatory term, especially when the intent is clearly to hurt either the child or the parents. As conventional wisdom states, “It’s not what you say, it’s how you say it.”

Today marks the fifth anniversary of my son George’s autism diagnosis. I guess it is a cause for celebration: not only have we survived for this long, we have seen great strides along the way.

It is also the first – and hopefully only – day on which someone referred to George as our “retarded son”. It happened in the early hours of the morning during a telephone argument between my husband and someone else. There is no doubt that the words were spoken with malicious intent.

George was asleep, so he was spared the pain of hearing himself referred to in this way. The hurt behind the words had to go somewhere, though, and it slammed into me, almost leaving me breathless, and then settled over my shoulders like a heavy cloak.

Several hours later, I am left with a knot in the pit of my stomach that won’t go away, and unshed tears that I am trying with all my might to contain.

As I try to prepare my son for life in the big wide world, I worry about what the big wide world is going to throw at him. Will it be a place of opportunity for him, or will it be a minefield of insults and discrimination?

Do I try to shield him from the hurt, or do I let some of it get through to him so he can learn how to protect himself?

How do I ensure that my son will be OK, that he will be happy and feel safe, in the days when I am no longer here?

Filed Under: 2012 Wordcount Blogathon, autism, Bullying, Discrimination, life, parenting, Respect, Special Needs, stereotyping Tagged With: , , , , , , , ,
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Emerging Into The World Of Books

May 30, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

My younger son James was just over a year old when his big brother George was diagnosed with autism. As we adjusted to our new reality and tried to figure out what we were supposed to do for George, we anxiously – almost obsessively – watched James for signs of a delay. We scoured developmental checklists and asked George’s speech therapist how James’ speech should be progressing.

Thanks to our family doctor’s initial refusal to give us a referral, George’s diagnosis came a full year after it should have. Every time I thought about the year of missed interventions, I felt sick. I did not want history to repeat itself: if James had autism or anything else, I wanted to know about it right away.

Fairly early on, it became apparent that we didn’t have anything to worry about, at least from an autism point of view. James’ speech development was slightly ahead of the curve. He hit the “terrible twos” right on target, and his interactive play skills showed up right when they should have.

When James started going to school, it felt kind of strange to just install him in a regular classroom instead of having to go to special ed review meetings and haggle over the wording in IEP’s (Individual Education Plans).

School was not without its challenges for James, though. In Ontario, the age cutoffs run on the calendar year. Children start Junior Kindergarten the year they turn four, whether they celebrate their birthdays in January or December.

James, being a Christmas Day baby, was very young when he started school. He was almost four months shy of his fourth birthday, by far the youngest and smallest kid in his class. He had not developed the coping skills that most of his classmates had, and for the first few weeks he cried almost every day.

The Kindergarten teacher was a kindly man who took James under his wing during that initial period of adjustment. He made sure the other kids weren’t too rough with him, and found imaginative ways to help James not only adapt to school, but to enjoy it. James adored the teacher, and by Halloween of that year, he looked forward to going to school every day.

Along with a number of his classmates, James suffered a setback when the teacher unexpectedly died just before Christmas of that year. He didn’t even really know what death meant, and he seemed to take it a bit personally that the teacher had “left” him.

But James is as resilient as the next kid, and he bounced back. By the time he reached the beginning of Grade 1 he was on track again.

Or was he?

Shortly after James started Grade 1, I noticed that his reading did not seem up to scratch. It’s not like I was expecting the kid to read War and Peace, but he was not mastering even the most basic of words. He was almost six and could do little beyond identifying the letters of the alphabet, whereas George had been reading fluently by the time he was four and probably would be able to read War and Peace.

James’ inability to read was not for lack of trying. The poor child tried gallantly to make sense of the strings of letters. I started wondering if he had dyslexia, like his dad. If this was the case, I wanted to know right away, knowing that early intervention would be the key to success.

I spoke to James’ teacher, who confirmed that he was reading below grade level.

“Let’s see where he’s at by the end of this school year,” she advised.

Immediately, I balked, remembering how George’s autism diagnosis had been delayed because of a doctor who said something very similar. I told the teacher why I was reluctant to procrastinate, and she was quick to reassure me.

“Trust me,” she said gently. “Many first-graders don’t really get reading until close to the end of the school year. And remember, if James had been born just a week later, he’d only be in Kindergarten right now.”

Where every fibre of my being had known that our family doctor was wrong about George, something told me to have faith in James’ teacher. And so I waited.

Within weeks of that conversation, James was starting to make progress – not in giant leaps, but in baby-steps. He was reading simple familiar words. It was highly encouraging, although he still got frustrated when he couldn’t figure out the longer words.

One day about two weeks ago, James’ teacher excitedly pulled my husband to one side when he picked James up from school.

“James flew through his spelling test today and he got them all right! I think something may have clicked!”

James himself was glowing from his accomplishment. All of a sudden, he had the confidence to really try to read. He started spelling words like Wednesday and vegetable. He developed a sudden interest in making words with George’s alphabetic fridge magnets (much to George’s chagrin).

James is still reading slightly below grade level, but it is increasingly likely that he will catch up by the time school lets out for the summer. His teacher was right on the money.

And I get to celebrate the accomplishments of not just one child, but two.

I feel like the luckiest, proudest mom on the planet.

(Photo credit: http://www.flickr.com/photos/bagelmouse/4700001481. This picture has a creative commons attribution license.)

Filed Under: 2012 Wordcount Blogathon, autism, Children, Dyslexia, Education, Progress, Reading, School, Special Needs Tagged With: , , , , , , , , , ,
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Making Peace With A Tough Choice

May 29, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

When I went for my six-week postpartum checkup after George was born, my OBGYN raised the question of whether my husband and I were going to have more children. We stared at each other in a perplexed kind of way, shrugged our shoulders and said, “I dunno.”

It was a question that we had honestly given no thought to. George had been an extremely welcome surprise, but he had been a surprise nonetheless. Family planning hadn’t exactly been a key feature in our lives.

When we did talk about it – this topic that we had simply never thought to discuss – we discovered that both of us had always envisaged life with three children. This was good. I thought it was a positive sign that I was with a man who wanted the same number of children as me.

When we decided to try for Baby Number Two, I got very serious about it. I downloaded those free online calendars that tell you what the best dates are to – well, you know. I was going to chart my cycles and keep track of my temperature to tell when I was ovulating.

As it happened, I didn’t need any of that stuff. Just six weeks after we decided we were officially trying to conceive, we got a big fat plus sign on the pregnancy test. Several months after that, James came barreling his way into the world like a cannonball.

Two down, one to go.

By the time we were ready to try for Baby Number Three, though, things had gotten complicated. James was almost two, and George, who was four, had been diagnosed with autism. We were recalibrating our lives after discovering that we were special needs parents, and I was still trying to find my way out of the terrible darkness of postpartum depression.

What if our third child had autism? Would it be fair for us, knowing that we weren’t going to be around forever, to leave James with the responsibility of having two siblings with special needs?

We were so conflicted about whether or not to have another child that we went to see a geneticist. The DNA testing did not confirm a genetic link to autism, but it did not rule it out either. The geneticist turned to the very detailed questionnaires that we had completed. Based on my own developmental history, which was almost identical to George’s, it seemed not only possible but likely that I was on the spectrum myself.

The geneticist advised that in spite of the inconclusive DNA test results, there was reason to believe that George’s autism might be genetically based. We were looking at a 12-15% probability that any other child we had would have autism.

This created a problem. My husband and I found ourselves on opposite sides of the fence. He was very concerned about the 15% probability. I, on the other hand, tried to focus on the other percentage: the 85% probability that the child we had would not have autism.

We flip-flopped back and forth for several months, torturing ourselves with possibilities and what-ifs. We were torn between doing what was right for the kids we already had, and doing what both of us had always wanted. We really could have done with a crystal ball at around that time.

In the end, it was more than George’s autism that made the decision for us. I was already at an age where there’s a higher risk of having a baby with Downs Syndrome. I was finally starting to see a pinprick of light at the end of the postpartum depression tunnel. We had just successfully potty-trained James, and I wasn’t sure that I wanted to start a new two-year cycle of diapering.

Most importantly, I realized that I didn’t need more children. The two that I had were absolutely perfect. When I came home from work at the end of each day and hugged them, I felt complete. I did not feel that there was piece missing – a piece that would be filled by another child.

When I am sitting on the floor in my living room, with one kid on my lap and the other jumping on my back, I know that we made the right choice. I know that my family is whole.

Have you had to wrestle with the question of whether to have more children? What was the deciding factor for you?

(Photo credit: http://www.flickr.com/photos/joehowell/2282930348/. This picture has a creative commons attribution license.)

Filed Under: 2012 Wordcount Blogathon, autism, Choices, family, Genetics, parenting, Siblings, Special Needs Tagged With: , , , , , , , ,
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A House Full Of Love

May 14, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Today is Guest Post Exchange Day! I am honoured to introduce you to a fellow special needs mom, who is not only an awesome blogger, but also an awesome friend. Mimi has not one, not two, but five children with special needs. That would sound daunting to anyone, but Mimi wouldn’t change her life for anything.

Hi!  I’m Mimi, mom to 5 great kids, all with special needs, but we don’t focus on that.  We focus on their achievements, their triumphs and the love that they have for each other.  Sure, they fight just like any other siblings would fight but at the end of the day the love is still there for each other.  My oldest daughter is 24 and diagnosed with PDD-NOS (a form of autism) and is an unmedicated bipolar by her choice.  My next daughter is 22 and was born with Down Syndrome, hydrocephalus, PDD-NOS and acanthosis nigricans, she’s my spit-fire child.  Next is my soon to be 16 year old daughter who was born with spastic diaparesis cerebral palsy, she also has Asperger’s Syndrome, bipolar with psychosis, anxiety disorder and an eating disorder.  Next are my two boys, my first son is 10 (11 in June) and for some unknown reason he is cognitively impaired, he too has PDD-NOS and a mood disorder.  My youngest son is 9 (10 in June) and he was born with Fetal Valproate Syndrome, static encephalopathy (due to a traumatic birth), he has PDD-NOS and a mood disorder.

Raising special needs children has its ups and downs, but I wouldn’t trade my life for anything the world has to offer me.  My children are the reason my world rotates on its axis.  Some people call me a mother polar bear because I am so protective of my children, but who else is going to protect them besides me?

My boys are the best of friends, they are great playmates for each other and I hope and pray that the bond between them stays forever.  It’s similar to the bond between my 2 oldest daughters.  They are close because when they were young girls, I was a single parent by my choice, so it was just us 3 girls against the world.  Until I met my husband in 1994, Bethany was 6 and Lauryn was 4 and Jon has been their daddy ever since.

What entertains my kids?  Different things…  My boys are video gamers with their dad, they each have either their PSP’s or PSP Go’s or in Jons case his PSP Vita, but they all three will gang up on the bed and be gaming, ignoring everything else that’s going on, whereas Maurra my (almost) 16 yr old loves doing research on various things, which is very common for children diagnosed with Asperger’s Syndrome, right now she’s focusing on historical events.  Lauryn is crazy for Justin Bieber and loves to watch horror shows in her bedroom.  Bethany is my crazy football fan – well I’m pretty crazy for our Green Bay Packers also, so we tend to watch football together and we DVR the games so we can watch them through the week.

Our social outings look a little different than most.  First of all, my 3 youngest kids can’t handle car rides very well, so our trips have to be short in nature, and there has to be a reward at the end of the trip.  Lauryn enjoys going to her adult day program 4 days a week, but that’s about the extent of her traveling comfort.  She loves to dance in the truck which is fun and the cars around us seem to be her audience.  Bethany (my oldest) and I tend to do mother-daughter outings or she will go with me if I have to run errands.  It’s hard to break things up so the kids can handle everything, but in the end it’s for the best for them.

The boys are getting ready to start their 3rd year playing Miracle League baseball, which is baseball strictly for children who are disabled.  I volunteer my time with the league as the team coordinator and absolutely love watching all of the kids play the game.

Like I said before, I love having special needs children, and now we are looking into adopting a special needs child because there is more room in my heart for more children, but I can’t have them myself anymore.  So we are looking into a special needs adoption.  I hope it all works out for the best.

Well, thank you for letting me share my family with you.  Have a great day!

And thank you, Mimi, for sharing your family with us!

Mimi has a great blog at Wife… Mom… Writer… All Blessings. She can also be found on Twitter @Gigi_S.

Filed Under: 2012 Wordcount Blogathon, family, Guest Posts, life, parenting, Special Needs Tagged With: , , , , , , , ,
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You Think You Know…

May 8, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Today, I am also participating in the WEGO Health True Life Tuesday Blog Party, in which participants start their posts with the phrase, “You think you know, but you have no idea…”

You think you know, but you have no idea.

You look at parents who have special needs kids, and you contemplate the things you think they are doing wrong. Thinking you know better, you utter sentences that start with the phrase, “If that was my child…”

Until you get handed a diagnosis of autism and realize that, wait a minute, that is your child. You find yourself facing the same challenges as all of those parents you used to be quick to judge, and you find yourself responding in very similar ways.

You have no idea what special needs parenting is like until you are wearing those shoes.

Yes, my child has sometimes been the kid having a very loud meltdown in a grocery store.
Yes, I am the mom who has occasionally snapped needlessly at her kids in public, because she was just so overwhelmed.
Yes, I sometimes let my child play on the computer for longer than is considered ideal, because I am so desperate for time to take a shower.
Yes, I do want to get all available services for my child, but that is way easier said than done.
No, I don’t invite my son’s classmates over for playdates to encourage interaction. They are all special needs kids, and seeing each other outside of school is too weird and overwhelming for them.
Yes, my son’s hair is tangled and unruly. He is terrified of having it either washed or cut, and I just have to do the best I can. I know it doesn’t always look great.
Yes, I vaccinate my kids. I think the autism/vaccine link is pure bumph. I respect anyone who does believe in the link and I expect the same courtesy from them.

And no, I had no clue what special needs parenting was all about until I woke up one morning and discovered that I was now one of them. Many things have surprised me about this journey. There are things both good and bad that I did not expect. Being a special needs mom has taught me a great deal about myself and about other people. One of my biggest surprise discoveries is that I have far bigger reserves of patience than I thought. For the most part, I can stay calm in the face of a meltdown, and do what I need to do to see myself and my son through the storm.

Last week, I used my social media channels to ask other moms the question: just what is it about special needs parenting that has surprised you the most? I got responses that were both poignant and uplifting. Many of them I can relate to myself.

Here’s what other special parents have found surprising about their journeys:

  • The apathy of most people. If it’s not affecting them personally, they don’t give a crap or they say ” Why should I? It’s not affecting me” (Leigh)
  • It’s not as bad as I thought it would be. (Jacquie)
  • How much energy it takes at times…like mid-meltdown… (Lucette)
  • The lack of community support. I was also surprised by my reaction to that – one of passion and action! (Amy)
  • How ignorant the NT’s can be (Ron) (For the uninitiated, NT means neurotypical, a fancy term for “typically developing”)
  • How strong it can make a mother! (Mimi)
  • How screwed up my idea of success was. (Jennifer)
  • How uncaring the rest of the community is and how much energy it takes to keep on fighting for acceptance. (Susan)
  • The fact that we have to fight our school systems for EVERY support and service that will help our kids in the future. (Barbara)
  • How hard it is to accept offers of help, and how much better it works for everyone when I do. (Ruth)
  • How strong I’ve become, physically and emotionally…well, most days anyway. 😉  (Megan)
  • How after a while you stop seeing the special needs, and just see the child. It’s only ever other people who make you notice the special needs again. (Freya)
  • How hard but rewarding it is! (Hike. Blog. Love)
  • How much you truly learn from them! And I now know the real meaning of determination. (Vera)
  • How I have forced myself to re-evaluate some of the values I had about life. Some people will always do “bad” things, our faith in a Higher Power should be our motivation to forgive those people since we ask forgiveness from “Above” and HE forgives indiscriminately (Naadia)

Reading what these parents have to say should send a very clear message that even when there’s a common diagnosis, like autism, everyone’s journey is unique. We all have our own sets of challenges.

So next time you think someone is falling short of what they could or should be doing as a parent, just remember that you’ll probably never have the opportunity to wear their shoes.

(Photo credit: http://www.flickr.com/photos/libookperson/6187904322/. This picture has a creative commons attribution license.)

Filed Under: 2012 Wordcount Blogathon, autism, Children, Coping Skills, parenting, Special Needs, WEGO Health Tagged With: , , , , , ,
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Affection, Empathy And Autism

May 5, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Several years ago, my mom volunteered at a “Riding For The Disabled” program. She would help a child with cerebral palsy or Downs Syndrome onto a horse, and then lead the horse around a field. Many of the kids she worked with would be on the edge of meltdown at the beginning of the designated hour, but after five minutes on horseback they would be completely calm.  My mom, always an animal-lover, adored the horses, and she loved working with the children.

There was a little boy with autism in the group, and although my mom didn’t love him any less than the other kids, she did find him a lot more challenging to work with. He was a highly intelligent child with severe communication deficits and some intense behavioural issues. Once settled on his horse, he would jab at the horse’s neck and tug at its mane, and any attempts by my mom to stop him would lead to meltdown. She swore that he deliberately kicked her as he was getting down from the horse after his turn. More than once she returned home with nasty bruises on her arms or legs.

Although this was all in the day before autism became a more direct part of our lives, my mom was sufficiently aware to know that the child’s behaviour was a result of his autism, and not a personal vendetta against either her or the horse. She believed, though, that he was not remotely capable of either affection or empathy. And because people form generalizations based on what they know, for a long time we subscribed to the commonly held belief that people with autism are not able to have meaningful connections with other human beings.

In fact, when we were waiting for my own son’s diagnosis, in our ignorance we pretty much ruled out autism in our own minds.

“He’s so affectionate,” we would say. “It couldn’t possibly be autism.”

Now, of course, we know better, and we are able to gently correct the people we come across who follow the same stereotype.

My son George may not ever be a great talker, but there is nothing wrong with his ability to feel and express love. All I have to do to know this is come home after work. My husband and sons watch for me from the front window, and as soon as they see me walking down our quiet street, my husband opens the door. The kids dash out and race each other to me. And then, with looks of pure joy on their faces, they launch themselves at me so hard that the force of their love knocks me off-balance.

Sometimes, when I am working on my laptop at home, George will  come up to me and somehow arrange his lanky eight-year-old self on my lap. And he will wrap his little arms around my neck and hug me, oh so fiercely. Then there are the times I wake up in the night to find him snuggled up to me, sleeping peacefully with one of his hands curled around a strand of my hair.

Admittedly, there was a time when I worried about what seemed to be a lack of empathy towards his little brother, James. About a year ago, I told a member of George’s therapy team that whenever James was crying, George would laugh hysterically at him. I expressed concern at the lack of empathy and the apparent joy that he got out of his brother’s pain. The therapist smiled at me kindly and said, “He’s a seven-year-old boy. That’s what seven-year-old boys do.”

While most other people have to be educated on the behaviour of special needs kids, my husband and I frequently have to be told how typical kids behave. It’s a little bizarre, but there it is.

The truth is that although George can be a typical pain-in-the-ass brother, just like any other brother, it is clear that he adores James. He is never comfortable with James’ absence, and his demeanour takes on an air of tenderness when James is sick. There are times when one of the boys will go in search of the other one during the night, and I will find them in the morning, curled up together, with George’s arm thrown protectively over James’ shoulders.

When I think about George’s future, there are many things I worry about.

His relationship with his brother is not one of them.

(Photo credit: Kirsten Doyle)

Filed Under: 2012 Wordcount Blogathon, autism, Brothers, Empathy, Love Tagged With: , , , , , ,
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