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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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Autistic Is Better Than Dead: Guest Post by Sara Morgan

January 3, 2012 By

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

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

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

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

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

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

(Photo credit: Sara Morgan)

Filed Under: autism, Children, Death, parenting, Pregnancy Loss, Sara Morgan Tagged With: , , , , , ,
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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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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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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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Emergence Of A Rainbow Generation

November 3, 2011 By

On a hot day in February 1990, I stood still, waiting for history to happen. It was the middle of a South African summer; I had just started my final year at the University of Cape Town, and it seemed as if the entire student body – no, make that the entire population of the Western Cape – had turned out. I was going through a lot of difficulty in my life at that time, but wild horses couldn’t have kept me away from this.

Finally, it happened: the event everyone had been waiting for. A well-known and much-loved figure appeared and waved at the crowd, which was going nuts with excitement. Tears of emotion flowed all around me and within me as this great man stood before us. It was official. Nelson Mandela, the icon of freedom in South Africa, was a free man.

During my childhood years in South Africa, I was a little afraid of black people. This is hardly surprising when you consider the draconian laws that were in effect at the time. Black people and white people were completely segregated. They were required by law to live in different neighbourhoods, they could not attend the same schools or churches, and they could not use the same public facilities. In many cases, they could not even enter stores through the same doors. When I was a child, my exposure to black people was limited to the gardener and the cleaning lady.

My parents, and the parents of my peers, did their best. They themselves had been raised to distrust people different from themselves. Fortunately for me and my contemporaries, common sense and basic human dignity had prevailed, so the generation above me had gone against their own upbringings and taught us to treat everyone with respect, no matter what colour their skin was.

And yet, it has to be remembered that our parents were trying to raise non-discriminatory kids in a society that legally mandated racism.  We couldn’t have playdates with black people. If you looked at the student body during school assemblies, you would have seen a sea of white faces. We never shared grocery store line-ups with black people; we didn’t even pass them on the street.

How could a generation of kids learn how to interact in a positive way with a group of people they were never exposed to? It is no wonder that despite the eventual dismantling of the Apartheid regime, race relations in South Africa remain troubled. People are still learning how to get along after generations of having been told that they were not allowed to.

My two kids are having a childhood that contrasts sharply with my own. They have never known an existence of discrimination. They interact freely with kids from all backgrounds, regardless of ethnic origin. To them, people are just people. A telling example of this happened almost two years ago, when my younger son’s Kindergarten teacher unexpectedly died and a new teacher was brought in. When I asked my son what the new teacher looked like, he said she was absolutely beautiful. She had long black hair, and a big smile, and big brown eyes. It is perhaps a damning indictment to my own upbringing that I was surprised, when I finally met the teacher, to see that she was black. My son had not once mentioned this in his lengthy description of her. He had not even noticed her skin colour.

My kids are growing up in a world that sadly still experiences some racism. But so far, they themselves have not shown any signs of discrimination. If that ever happens, it will be nipped in the bud immediately. My dream is for my kids to grow up respecting everyone, no matter who they are or where they come from.

As Scout says in Harper Lee’s To Kill A Mockingbird, “There’s only one kind of folks. Folks.”

Filed Under: Apartheid, Childhood, parenting, Race relations, Respect, South Africa Tagged With: , , , , , , ,
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Three Generations Of Runners

November 2, 2011 By

James preparing for his first run

One of the best races I ever ran was my first-ever 10K event starting at Mel Lastman Square, on the northern fringes of Toronto. This was back in 2001, before my long hiatus from the running scene. The run was called the Ismaeli Run For Charity, and although it was a small event with only 300 or so runners, it was festive and well-organized. This particular race stands out in my memory not because of the run itself (I actually remember it being a very hard run: race day coincided with the start of an intense heatwave in Toronto), but because my dad was there. It is the only time my dad got to send me off at a start line and cheer me on as I crossed the finish.

Dad played a pivotal role in my running. Having been a top-class marathoner in his youth, he became my mentor when I first took up running, way back in 1996.  He gave me advice on everything from race-day strategy to the importance of having the right socks. He showed me how to tackle hills and demonstrated how incorrectly laced shoes can make your feet hurt. He advised me not to rely too much on technology in my training, pointing that in his youth, the only tool a runner really had was his own body. He told countless stories of the races he had run and the people he had encountered on the way.

He was immensely proud when I started running. Passing on his stories and his wisdom to me meant a lot to him, and the day he stood waiting for me at the finish line was absolutely momentous.

Now, I get to pass on the legacy as a third generation is added to the line of runners. My son James, who is all of five years old, has been taking an interest in my running for the last year or so. He wishes me well as I set out for my long runs, and stretches with me when I get back. He fussily makes sure I have enough water to drink, and for some time, he has been talking about going running with me “one day”.

Recently, when I registered for the upcoming 10K event at the Whitby Waterfront Races, James asked if he could be in the race too. Deciding that he was ready, I registered him for the 1K kiddies event. And this weekend, his dream of going running with me came true as I took him out for his first real run.

I did not have any real expectation for the run. I just wanted to see how James would do over a full kilometre, and more importantly, I wanted to get a sense of whether he would really enjoy it. I made it clear to him that he could stop anytime he wanted, and that he didn’t have to do it in the first place unless he was sure. This earned me an eye-roll so intense that I thought his eyes would fall out of his head, and he said impatiently, “Mom-meeeee! Can we please go now?”

I needn’t have worried. Although he briefly slowed to a walk three or four times, he ran the kilometre I had measured out with no trouble. I marvelled at his natural form as his body just fell into the posture and rhythm that articles in running magazines are always saying we should adopt.

I also needn’t have worried about whether he would enjoy it. He loved it. He wants to go again, and as the day of his first race approaches, he is getting more and more excited.

I realize that anything could happen: the kid is only five and he could lose interest tomorrow. But by all appearances, he is really interested in running being a part of his life, and what I do as a parent could either cement that or dissipate it. I feel that I am witnessing the emergence of a new runner: a runner who I get the privilege of nurturing and mentoring, just as my dad did for me.

I feel that in guiding my son, I am a part of something big, something special, and something that I consider to be a great honour.

I only wish my dad could see this. Who knows? Maybe he can.

Welcome, James to the world of running. I hope you choose to stay here, and if you do, I hope we get to run many miles together.

(Photo credit to the author)

Filed Under: Children, dad, generations, legacy, parenting, running Tagged With: , , , , , , , , ,
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Embracing Autism

November 1, 2011 By

If there was a cure for autism, would you use it for your child?

This question was posed to me recently by a non-autism parent, and it really made me think. Before I was an autism mom – indeed, before I was any kind of mom – my immediate instinct would have been to say “Yes! Absolutely! What kind of parent would choose for their child to have a disability?”

Now that I can speak with the voice of experience, my answer to that question is very different. There are some aspects of autism that I would get rid of in a heartbeat. When my son, now eight, has his meltdowns, the expression of anguish in his eyes breaks my heart. If I could wave a magic wand, I would give him the ability to communicate the pain that he feels during those outbursts. I would make the changes of seasons easier for him, I would make Christmas less overwhelming, and I would give him the skills to play with his little brother.

On the other hand, there are things that I would not change in a million years. Someone once told me that my son is very smart “in spite of his autism.” I gently corrected this person by telling her that my son is very smart because of his autism. His mind works in a very unique way. Thanks to his out-of-the-box thinking, this kid can problem-solve rings around the rest of us. He can do multiplication in his head, and this is something that no-one has ever taught him. He just figured it out himself. He sees patterns that are lost on everyone around him: once, when he was putting coloured pegs into a board, I literally had to squint at the board from a number of angles before the pattern he was creating suddenly jumped out at me. If he was given a cure for autism, that incredible way of thinking would disappear.

In the eyes of society, my son has a disability. The education system regards him as having special needs, autism is classified by the medical community as a disability, and the government has granted us a disability tax credit for him. And rightly so: my son definitely needs special accommodations. There is no way he can function in a neurotypical world without assistance. Although I believe he will be capable of great things as an adult, I see the possibility of him being unable to live completely independently. But as much as there are things that he cannot do as well as other people, there are things that he does better. He may frequently take the scenic route from a problem to the solution, but his route can cover a lot more ground, solve problems that no-one else even knew existed, and frankly, the scenic route often has a better view than the highway.

When this amazing boy with his sweet, sweet disposition curls up on the couch with me, wraps his little arms around me, and allows me the privilege of being in his world with him, I feel a love for him that is too big to put into words.

Would I ever want my son to be “cured” of autism? No. Because the challenges just make us stronger, and his autism is a part of the beautiful person he is.

Filed Under: Acceptance, autism, Challenges, Intelligence, life, Love, parenting Tagged With: , , , , , , ,
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A World Of Anguish

October 5, 2011 By

CRASH!

The entire house seems to shake as my seven-year-old son screams and bangs his head on the hardwood floor. He raises his head to bang it again, but I reach him first. I have no idea what has triggered this meltdown, and right now, I don’t have the time to try and guess.

My son is long and lanky: he is far too big for me to carry, but I have to get him away from the hardwood. Yes, I know what the so-called experts keep saying. When a meltdown happens, you have to ignore it. Paying any attention to him while he’s melting down will reinforce the behaviour.

Yeah, well, while I’m ignoring the meltdown, my child could be giving himself a concussion. This frantic headbanging isn’t anything I haven’t already seen. There are so many dents in my drywall that the inside of my house looks like a giant golf ball.

I half-lift, half-drag my son into the carpeted living room. I grab cushions and blankets – anything soft that’s within my reach – and I pad our immediate surroundings to stop my boy from hurting himself. Using a technique borne of experience, I wrap my arms around him and use my body weight to keep him still, to keep him safe.

While all of this is happening, he is kicking and screaming. They are not screams of anger, but of frustration. They are the screams of a child who is locked inside his own head and cannot find the way out. He looks directly into my eyes, and his expression is one of desperation. I am reminded of a caged animal who wants nothing more than the ability to run free.

As I look at my beautiful child, as I see him in such anguish, I want to cry. I fight back the tears. I have to be strong right now. Later on, when this has passed, I will have my chance to cry.

In my mind, I start talking to Autism as if it were a real person and not merely the name of the condition affecting my son.

“Damn you, Autism. There are times when I don’t mind you so much. There are times when I am completely comfortable with your presence. Hell, sometimes I even like you. But at times like this, Autism, I hate you like you wouldn’t believe because of what you do to my child.”

My son and I lie there on the living floor for what seems like ages. Slowly, so slowly that it’s barely perceptible, the screaming becomes less intense. The weight of my body provides him with the physical pressure he needs to become grounded again. And eventually, the screams stop altogether and I can loosen my hold on him. We curl up on the couch together. The silence is punctuated by an occasional hic.

I look at my child’s angelic face and tenderly smooth my hand over his hair. His eyes are closed and I think he’s gone to sleep. But then he opens his eyes and a special look passes between us, a look that no-one in the world apart from the two of us would ever be able to interpret.

You know what it’s like, he says to me with his eyes. Sometimes you can see into my world.

Yes I can, my eyes say back to him. But it’s only because you trust me enough to let me in.

And secure in the knowledge that he is not alone, he falls asleep in my arms.

This week’s Indie Ink Challenge came from FlamingNyx, who gave me this prompt: Describe “that” look you got in a secret moment of knowing. That look that no-one in the world would understand and can only pass between you and “that” person. 
I challenged The Drama Mama with the prompt: Tell the story of a policeman who died in the line of duty, from the point of view of his eight-year-old child.

Filed Under: autism, Empathy, Indie Ink Writing Challenge, life, Meltdown, parenting Tagged With: , , ,
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Autism Meltdowns: Six Strategies For Helping Siblings

September 10, 2011 By

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

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

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

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

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

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

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

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

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

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

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

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