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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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A Week Of Inspiration: What I’m Taking Away

January 7, 2012 By

As 2011 drew to a close, a gave myself a mission to start off 2012 on the right note. To do that, I would approach some women who I found to be inspirational, and I would ask them to post something on my blog that would send a positive message. It started off as a simple resolution for me to start the year in a positive way to get myself out of the funk I have been in. By the time I was scheduling the posts, it had become a project to help everyone: I realized that many people – including a couple of the writers – were in need of a dose of the good stuff that life has to offer.

This would be my small way of trying to make the world a better, happier place filled with possibilities and motivation.

I took something valuable away from all of the posts this week – things that I will take forward with me as I navigate my way through the jungle of life in 2012. For that, I want to give heartfelt thanks to all of my contributors.

I am battling with some personal demons right now, and it’s hard. There are days when I can barely see my way through to getting out of bed. Ultimately, though, I have support. I have my family, I have friends, and I am in good enough health to put on running shoes and pound the hell out of the pavement when I need relief from the stress. On Monday, Kerry White gave us a reminder on perspective. It does me good to remind myself that no matter how difficult things may be, I will muddle my way through it all, aided by the support system that I have around me.

A few minutes ago, my son George – autistic, eight years old, and very long and lanky – clambered into my lap for a hug and a cuddle. As I held this treasure in my arms, I reflected on the fact that special needs parenting is sometimes as hard as hell, but life without this amazing child is just unfathomable. Sara Morgan expressed this on Tuesday, when she said that yeah, we have kids with autism, but at least we have them.

How easy is it for us to just lie down and quit when we’re faced with a personal tragedy? On Wednesday, Phaedra Kennedy took us through her heartbreaking unsuccessful quest to have a baby, and her subsequent resolve to make 2011 the best year of her life. Not only does Phaedra’s tale inspire me to set goals for this year and really work towards them, I am honoured to have her mentoring me through my next stage of evolution as a runner.

Perhaps there is truth to the idea that the fluttering of a butterfly’s wings can ultimately cause a storm on the other side of the world. In the same way, a handful of women blogging about motherhood can result in impoverished children receiving life-saving vaccinations, and fewer babies dying of pneumonia. On Thursday, Jennifer Burden told us about an idea that started small and morphed into something huge. Over the next year, I will endeavour to follow my dreams, no matter how silly they may seem. Who knows where they will take me?

There have been times in the past, when things have been rough, that I have succumbed to the temptation to just let myself go. I have asked myself what the point of it all is. If Margie Bryant had given in to that kind of negative self-talk, where would she be today? She survived addiction, a string of meaningless, emotionally empty relationships, and time in a federal prison. She kicked low self-esteem in the butt, and has turned her life around. She leads a life anyone could be proud of, and she’s found true love to boot. If she could make that kind of U-turn, surely I have it in me to control the direction of my own life.

My personal mission this year is to focus on taking care of myself. I am going to find some balance in my life and do more things that I want to do.

Will this take away the time and energy that I have always unquestioningly devoted to my husband and children? Or will doings things for myself inject me with more energy, and lead to a more enriched, satisfying life for all of us?

(Thank you again to Kerry, Sara, Phaedra, Jennifer and Margie. I am sure your tales of inspiration have touched the lives of many people reading this blog.)

 

 

Filed Under: Guest Posts, Inspiration, Jennifer Burden, Kerry White, life, Margie Bryant, New Year, Phaedra Kennedy, Positive Attitude, Sara Morgan, Setting Goals, Thinking Differently Tagged With: , , , , ,
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Redemption: Guest Post by Margie Bryant

January 6, 2012 By

In October 2002, I experienced the heartbreak of a pregnancy loss in the second trimester. I was not given an explanation as to what had gone wrong, but the pregnancy had been riddled with problems from the start. It was devastating. As devastating as it was, though, that loss paved the way for tremendous blessings. If we had not lost that precious baby, we would not have our son George. And I would not have had my life enriched by the friendship of an incredible woman named Margie Bryant.

When George was born, I suffered from the same angst faced by most women who have had a pregnancy or infant loss. I was paranoid about every single little thing. I feared losing my child like I had feared nothing else, and my mind read every minor problem as a sign of impending disaster. Fortunately, there was an Internet group for people like me – women who are parenting children after a pregnancy or infant loss. It is through this group that I got to know Margie.

A few years ago, Margie went through a major turning point in her life. Today, she tells us about her experiences, and how they motivated her to change her life completely. She is truly one of the strongest, most inspirational people I have ever known. She has turned her life around in a spectacular fashion. If anyone is in doubt that they will be able to improve their lives, they need look no further than Margie to know that the sky is the limit.

I can still remember the exact moment that I exited the white bricked Receiving and Discharge building, wearing commissary purchased gray shorts, short sleeved shirt and white Reeboks. In my arms, I carried the cardboard box taken from my last kitchen shift and it was filled with my possession of the last seven months: a crocheted purple and white blanket, two Bibles, the few paperback books that I didn’t leave behind and the multitude of letters that had sustained my sanity. The sun was already beaming a warm Texas ray on my pale skin and I could feel my face perspiring under the borrowed cosmetics. My thick strawberry blond curls were pulled tightly into a corkscrew bundle with just a tendril framing my face. It felt odd to be “pretty” again after months of a bare face and ponytail existence.

It was surreal that this hell was finally over; the worst experience of my thirty four years had come to an end. There would be no more sleepless nights in the frigid tiny room that contained two sets of metal bunk beds with thin mattresses that made your bones ache, four tall metal lockers, a small desk and chair, a roof that poured rain from eight holes in the ceiling and the lone window that looked over the razor wire fence. I would no longer have to take eighteen steps up the stairs in my black, ten pound steel toe boots, just to get to the cramped space that I shared with three women.

As I walked toward the green sedan where my Dad and step-mom sat waiting to drive the five hundred miles home, it felt almost surreal to be leaving this enormous, overcrowded encampment. A quiet, empty home was waiting for me, with a private bathroom and a large, comfortable queen size sleigh bed. There would be no more monitored phone calls, I would not have to dress in the drab khaki uniforms worn by one thousand others and I had eaten my last bland, overly starched meal served on a heavy plastic tray. I was free to be myself again, not merely a last name and a nine digit number.

After placing the box in the trunk of the car and waving my final goodbye, I climbed into the back of the sedan and my Dad steered us out of the parking lot. I will never be the person I was before I left the Texas federal prison camp on a steamy and humid July day. As we drove past the security gate and onto the street that would take me home, I did not look back. Sinking into the comfort of the seat, I relaxed and allowed the joy of freedom to stream down my face.

Four and a half years later, my redemption has been paved with a loving family and generous friends who never gave up on me.  Prior to my incarceration, my low self esteem and emptiness were filled with drugs, alcohol and numerous worthless men. Literally, I had to learn the truth in the cliché about loving myself first and sobriety made that possible.

Simply, I finally stopped running from myself. I was able to look into the face of my children and know that I had the capability to be an outstanding mother. It still makes me emotional to remember my oldest son, who tried to have the strength of an adult, breaking down and crying on the morning that I left for prison. The constant ache of missing them and not seeing them for seven months is a memory that still causes physical pain. My redemption has not been about me; it is about my children.

It amazes me on an extremely regular basis that my life is full of such joy and pure happiness now. No, things are not always easy (I will be paying a monthly bill to the United States government for the rest of my life. Literally. ) but I have far more than I expected after almost losing everything. In the last four years: I went back to school (will graduate with a Bachelors degree next December), worked my way up to a well paying position in the field of my study, have a closer relationship that ever before with my family and more importantly, my children.

And….

At long last, I found love. True, functional, healthy, romantic, laughter filled, passionate love. I met him two week after I came home from prison and last weekend, on Christmas Eve, in front of my family, he asked me to be his wife. My heart and my home are finally complete.

As I said though, my life isn’t a carefree romp down Easy Street. My self esteem is daily work and something that I must continually improve upon. I wake up every day and have to make a choice to continue in a new and better direction. The problem with old, lifelong habits is that they die painfully slow. However, when times are extremely hard, I think back to those seven months in 2007 and know that very few things could be that dreadful again.

Throughout my journey over the last four and a half years, here is what I have learned to be true: change for the better is extremely difficult and takes constant work. However, once you start making positive changes, life starts to become incredibly astounding.

(Photo credit: Dave Hopton)

Filed Under: Inspiration, life, Margie Bryant, Prison, Second Chances Tagged With: , , , , , ,
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True Heroes: Guest Post by Kerry White

January 2, 2012 By

I go through phases where I spend a lot of time whining about how tough my life is. I’m working too much, I’m commuting for too long, I have too much to do when I get home, I get too little sleep. In the end, though, I’m always able to give my head a shake and reflect on the fact that I don’t have to do it alone. By the time I get home at the end of the work-day, the kids are home and fed. I have a husband who carries laundry baskets up and down the stairs so I don’t have to do it myself. I have someone to talk to at the end of the day, and when I go to bed at night, I have the physical and emotional warmth of another human being – one who may drive me nuts from time to time, but who I love and trust and wouldn’t want to trade for anyone in the world.

I have all the respect in the world for single parents, and often I wonder: how the hell does anyone do this alone? It’s hard enough to parent when there are two of you. Today’s post comes to us from one of those people I respect and admire so much. Kerry White is, like me, a transplanted South African. She lives in Texas, where she works as a freelance writer and raises her adorable little son. I am honoured to start of 2012 with this message of inspiration from a mom who helps us keep it all in perspective.

Thinking about what to write for this great and upbeat post was giving me a bit of a headache. I truly wanted to find that inner positive spirit I know I’ve got somewhere! I’ve been feeling so very Grinchy lately because it seems that the entire Universe has conspired against me to give me no end of grief in many areas. My son was sick with repeated rounds of ear infections, bronchitis, and a stomach virus, all in the span of 30 days. It was his 3rd birthday this month and I was so tired with a definite lack of funds in the bank so we sort of just didn’t do anything. I lost several high-value clients due to my need to put my son’s health and care first over their projects. I had someone steal my bank card information on the eve of Christmas Eve. Well, the list goes on and my own blog is filled with angst… but I am going to stop right here, right now.

This isn’t about being down and out. Because the truth is that, while things might be a bit of a challenge for me right now, I am still doing pretty okay considering everything else. My son’s health problems, while irritating and frustrating for us both, are fairly minor. My bank account will recover with a bit of hard work and a few nights of missed sleep for me. My son’s health issues do tend to clear up, with time and antibiotics.

Our house is warm, we have one another, and we have support from those who care about us. There’s even a special fella I’d love to make a much more prominent factor in our lives.

So often those supportive friends of mine tell me that I am a hero in their eyes, a supermom, and a super mom. However, I don’t feel it. I truly don’t. This led me to two other trains of thought.

There are parents who go through so much more with their darling children. Illnesses from which they will never recover, incredible and never-ending financial strife, endless trips to doctor’s offices, trips to the hospital from which their children may never return to their home, parents living in their cars or otherwise relying on the kindness of others to help them and their family. I have friends who were blessed to hold their babies in their arms, but for such a short amount of time before letting them go. I have friends who are parents without children in their arms yet.

Those are the true heroes, the super moms, the super dads, the superparents. They deserve the credit, they deserve the respect, they deserve the love, and the help. Truthfully, every parent needs to hear that they’re doing a pretty okay job at this parenting gig.

As parents, as people who care, we need to recognize in each other the greatness and the pure selflessness of loving parents. Sure things can be tough, rough, and overwhelming. But it seems to be the rare parent who doesn’t find things to be a challenge in one way or another. We need to support, encourage, and help one another realize that this is a big ole job and that it’s okay to not get everything perfect sometimes.

We’re going to feel like we’re at the end of our rope, we’re going to fall on the ground sobbing and begging whatever Powers That Be who may be listening to please friggen help us! But, with the support and help from our friends who may have been there, we can get through it! Maybe not with our sanity intact and our hair brushed, but get through it we will.

It takes a village, right? I think it goes a little bit further than that for parents; it takes a worldwide network of parental support to raise these kids we’ve been blessed with. 2012 is a great opportunity for us to start over, make resolutions to eat less, love more, and just be the support we need to be for others who are perhaps struggling just a little bit more than we are today.

I, for one, am counting my blessings now. I am counting my amazing friends and family members, including my amazing grandmother who is always there to answer the phone when I need support after a particularly challenging day. I wish for you nothing but strength, love, support, and the wisdom to know when you need to reach out to someone for support.

(Photo credit: Jorge Diaz1)

Filed Under: Heroes, Kerry White, life, parenting, Positive Attitude, Single Parenthood 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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The Hardest Job In The World

December 8, 2011 By

Parenting is the hardest job in the world. You never get time off – not even when you’re sleeping, not even when you are at work and your children are at school. You don’t get paid – not, at least, in any financial sense. There are times when you feel overworked, overwhelmed, and underappreciated, and every single little mistake you make can come back at you like a boomerang, days or weeks or even years later. Being a mom – or indeed, a dad – can drain your emotional and physical energy. You have to be in a million places at once, do a million things at a time, be teacher, nurse, therapist, judge, and mediator – sometimes simultaneously. The job comes with huge dollops of guilt: guilt for not having the time to play with your child while the stove is boiling over and the dog is barfing; guilt for locking yourself in the bathroom for five minutes of alone-time; guilt for actually buying something for yourself instead of spending the money on your child; guilt for rushing the homework supervision because the dinner is not made and the washing machine is jammed.

To be fair, the job of parenting has the best rewards ever: the enormous, gap-toothed smiles; the giant bear-hugs; the peals of childhood laughter; the I love you Mommy’s; the chance to look at your sleeping children at night and be filled with the most profound, incredible love.

It is  hard though, and us parents should be allowed to acknowledge that without that feeling of ever-present guilt.

And yet, when I think of how tough it all is, I cannot help reflecting on what parenthood was like for my grandmother. She was born in 1903, and her third and final child – my mother – was born just a couple of years before the start of World War II. Despite being geographically remote from the events of the war, South Africa was part of the British Commonwealth, and therefore joined the Allied forces. My grandfather was one of the generation of men sent off into the front-lines of battle in North Africa.

This thrust my grandmother into the daunting and somewhat unexpected territory of single-parenting three young children in times of extreme economic hardship. Things weren’t so easy for women back then – if they wanted to work, they were teachers or nurses. The term “stay at home mom” had not even been invented because it was unspeakable that there would be any other kind of mom.

For me, as a mom raising children in 2011, I have a reasonable degree of control over my life. I can choose to work (actually, that’s a lie – I have to work if I want my kids to have shoes instead of walking barefoot in the snow). I have a wide choice of career options, I can express myself freely through my writing, and I can get out there and go running. I have the freedom – within the framework of my family life – to make my own choices and steer my life in a certain direction.

My grandmother did not have the same leeway. She was controlled in a big way by the events going on in the world at the time. She was, in many respects, a bystander in her own life. She could only watch and wait as the world went through its turmoil, and she had to raise her kids knowing that things could change at any moment, things that she had no control over. A telegram could arrive telling her that my grandfather had been killed. Supplies of something-or-other could abruptly run out, leaving her scrambling for an alternative. The war could end and my grandfather could come home. The war could continue and she might not see him for a very long time. He could come home minus a limb or suffering from severe psychological trauma. She had no way of knowing what was going to happen.

It was a day-to-day kind of existence for that generation of mothers. My grandmother, and other women in her position, did not have the luxury of making choices or setting goals for the future.

Yes, parenting is the hardest job in the world. But I think, in many ways, that it is not as hard as it used to be.

This week’s Indie Ink Challenge came from Tara Roberts, who gave me this prompt: She was a bystander in her own life.
I challenged The Drama Mama with the prompt: Tell a story about how missing a bus for a few seconds can change your life.

Filed Under: Choices, Circumstance, Grandmother, Indie Ink Writing Challenge, life, parenting, World War II 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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Santa Pictures And The Autism Family: 10 Ways To Not Go Completely Insane

November 14, 2011 By
  1. A week ahead of time, start showing your autistic child pictures of Santa Claus, and tell him that this is the dude whose knee he will be sitting on in order to get a picture taken. Try your best not to be distracted by the neurotypical five-year-old sibling who is bouncing around like the Energizer Bunny on steroids yelling, “Ho ho ho! Hairy Christmas!”
  2. At T minus two days, have a dress rehearsal at your house. This is imperative if you want the autie to wear a suit and tie and he has a tendency to melt down if you try to get him to wear shirts that don’t have horizontal stripes. You’ll probably want to have another dress rehearsal the day before.
  3. The evening before, bath your kids and wash their hair. Do the autie first. If you do the hyperactive neurotypical child first, the autie will head for the hills the second he sees the shampoo bottle. Instead, let the hyperactive neurotypical child dive for cover, hide the shampoo until it’s time to use it, and have a reward system handy. I use gummy bears. Whenever the autie opens his mouth to scream, I just shove another gummy bear in. I have become a master at washing a screaming, flailing autistic child’s hair in less than ninety seconds.
  4. Try not to think of the fact that sometimes, ninety seconds feels more like ninety years.
  5. When you wake up on the morning of the Santa visit, call the photographers who are doing the pictures. Tell them that you have a child with autism, and that if he’s made to wait in line he will have such a bad meltdown that the entire building will crumble and the place will end up looking like an archaeological dig. Most people will accommodate you if they know ahead of time that your child has special needs.
  6. Bring changes of clothes for the kids. As soon as the picture has been taken, the autie will want to put on a shirt with horizontal stripes, and if one isn’t available there will be trouble.
  7. Right before you leave your house, call the photographers again and find out if all their equipment is working. Technology comes with its share of problems, and if you have wait around while they try to get their printer to connect wirelessly to their laptop, your frustrated kids will band together with all of the other frustrated kids who are there, and they will start a Lord Of The Flies kind of mutiny. Believe me, you don’t want to caught with a crowd of angry children. They will overpower you. They will tie the grown-ups to poles and dance around them holding spears and chanting.
  8. Don’t let the absence of spears fool you. Kids can be frighteningly resourceful, especially when they are ticked off and have among their number an autistic child who knows how to think outside the box.
  9. When you are granted entrance to Santa’s domain, don’t mess around. Say hi to Santa, get the picture, and leave. Don’t wait for the autie to make eye contact with the camera lens. You will be waiting until the cows come home.
  10. When it’s all over and you are sobbing in the bathroom from the stress of it all, remember that this experience was positive. As you look at the picture, don’t think about all of the planning and angst leading up to it. Reflect on the fact that you have succeeded in doing a typical family activity. You have brought immense joy to the hyperactive neurotypical child, who shouldn’t be deprived of the opportunity to sit on Santa’s knee. And you have taken another step toward teaching your autistic child some vital coping skills that will help him for the rest of his life. Know this, and feel good about what a great parent you are.
Filed Under: autism, Children, Christmas, Coping Skills, family, life, Santa Claus Tagged With: , , , , , , , , , ,
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To Serve And Protect

November 10, 2011 By

This morning, I got up extra-early – despite my body screaming at me in protest at being yanked out of bed at such an ungodly hour – and went to the gym. It was so early that, even with the recent time change that gives us an extra hour of daylight in the mornings, it was pitch-dark.

My drive to the gym was uneventful. It usually is. There’s not really a lot that can happen during a two-minute drive. By the time I got there the parking lot was already about half-full. I parked the car, grabbed my bag and got out. When I turned around I was surprised to find myself face-to-face with a large policeman who was standing beside his cruiser.

“Good morning!” he said.

I looked blankly around me for a few seconds before concluding that since no-one else was in the parking lot, the policeman was talking to me.

“Hi!” I said brightly. Remember that “bright” can be a relative term. It was just a smidgeon after five in the morning.

“This your car?” he asked.

Again, I looked around, this time at the other cars in the parking lot. Gesturing stupidly at my old Chevy van, I said, “This one?” as if the policemen could have been referring to any of the other fifteen cars that I had just gotten out of.

“Yes,” said the policeman, without showing any trace of impatience. He probably encounters a lot of dimwits early in the morning.

Cripes, I thought suddenly. Does he think I stole the car?

I assured the policeman of my status as the car’s rightful owner, and the conversation that ensued was very boring. It involved a headlight that was out, a promise (on my part) that it would be taken care of right away, and an assurance (on his part) that he would not write me up for the $110 ticket.

Coincidentally, when I was riding the subway to work about ninety minutes later, the pair of men sitting across from me were talking about the evil entity that is the police force. From what I could glean, one of them had received a speeding ticket over the weekend and was now fighting it. This story led to a rant about how policemen as a breed are awful money-grabbers who are rude to the public and never do anything useful.

As I listened to this, I thought back to my earlier encounter. The policeman had been very nice to me, even though I was displaying the intelligence of a dead tulip. Technically, he would have been within his rights to give me a ticket; instead, he had done me the service of telling me – helpfully and non-confrontationally – that my headlight needed fixing.

This all makes me think back to a day about two years ago when I was at our local coffee shop with James, who was then almost four. My two boys had been playing the back yard, and George had pushed James into a brick wall. James had ended up with a bleeding face and more than a few tears, so I left George with my mother-in-law and took James out for a donut.

We sat next to a window in the coffee shop, James proudly sporting the gauze patch on his cheek. When a police cruiser parked outside, James waved enthusiastically at the policeman, who waved back cheerfully. When the policeman entered the coffee shop, he came right up to our table and started chatting with James. He introduced himself as Larry, told James about his own little boy who was about the same age, and on James’ request, he took James outside to look at the police car. He capped off the exchange by pulling a Thomas the Train sticker out of his pocket and putting it onto the gauze patch.

James thought Christmas had come early that day. He spoke about Larry the policeman for weeks, and a couple of years later, he still remembers him. What I remember of that day is that a police officer took the time to speak to a child. He instilled in my son the idea that the police are there for the community, and that they are trusted sources of help.

There are exceptions, of course. There are the policemen who will  be rude and arrogant, and who will power-trip you right into the middle of next week. But it is important to note that the exceptions are just that – exceptions. It seems a bit harsh to diss the entire police force based on the actions of a few of its members.

I want my children to know that if they are ever in trouble, they can go to the police, and the police will help them.

I am truly grateful for everything the police do. These people, who willingly put themselves in dangerous situations in order to protect their communities, are heroes.

(Photo credit to grainger. This picture has a creative commons attribution license.)

Filed Under: Children, Community, Helping, Heroes, Police Tagged With: , , , , ,
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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: , , , , , , , ,
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