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Guest Post: Animals And Autism

15 May

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

Guest post exchange day was yesterday, but really, with so many phenomenal bloggers in the same challenge, how could I pick just one? Today’s guest blogger, Sarah, focuses on an area very close to my heart: animals, their relationships with people, and how they can facilitate healing. She just finished her first year of the Doctorate of Physical Therapy program at LSU-New Orleans. She is  passionate about animals and children and plans on integrating animals into her physical therapy practice after she graduates.

As a lifelong animal lover myself, I am drawn to Sarah’s blog like a magnet, and am thrilled that she agreed to write for me. Today, she shares with us how animals and children with autism can have a very special bond.

When people envision their perfect life with 2.5 kids and a white picket fence they also usually include a pet in the picture. After parents hear their child given the diagnosis of “autism”, often the idea of having a pet is questioned. In general, animals definitely provide many benefits to their owners, but as Kirsten recently reminded me “If you’ve met one person with autism, you’ve met one person with autism.” So what works for one child or family may not work with another.

The cool thing is that there have been several groups that have seen a lot of positive effects in children with autism after interacting with animals.

Max is one of Austin Dog Alliance’s “special dogs” available for adoption.

Austin Dog Alliance has group social skill classes where they use dogs to teach children with autism and Asperger’s. Some of the topics touched on in these classes include verbal and motor skills, interacting with and empathy for others, and appropriate behaviors both in and out of the classroom. These same skills can be achieved with a pet at home. The child can practice speaking to the dog and learn to recognize and understand the animal’s non-verbal cues. In doing this they are maintaining eye contact, which some people with autism struggle with. They can also learn to care about and for another living creature. This lesson can then translate to their interactions with other people.

Horse Boy Foundation brings kids in contact with horses to help them through what they call a “simple 6 stage process”. They’ve found that allowing kids to lie down on a horse’s back cuts down on their stimming (a repetitive movement that self stimulates the senses). Interacting with the horse is good overall sensory work while the actual horseback riding can be soothing because of the rocking motion. Again, giving commands allows the child to work on verbalization. I know that for most people owning a horse is out of the question, but there are several places that have horseback riding lessons where your child could get some of the same benefits.

http://www.youtube.com/watch?v=V11E-N2pK_o (it’s a youtube video about the Horse Boy Method)

Lois Brady found that a potbellied pig named Buttercup works wonders with the children. She’s a speech language pathologist, so of course her focus is getting the children to talk. But she has found that her pig is great for sensory work because he has different textures in different places on his body. The best thing about him is that people don’t have preconceived fears about pigs, like they might with a dog or even a horse.

(Photo from: http://www.prweb.com/releases/animal_assisted_therapy/continuing_education/prweb9261001.htm)

Buttercup is a great example that really any kind of pet can be used to help with things like speaking, motor skills, empathy and self-confidence. Some people prefer to have an animal specifically trained as a service animal and that has its benefits as well. You can read my post about autism service dogs to learn more about them. The most important thing is to decide what animal (if any) will be a good fit for your family.

Check out more great posts from Sarah Allen on her blog, Animals Help Heal. You can follow her on Twitter @AnimalsHelpHeal.

A House Full Of Love

14 May

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

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

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

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

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

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

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

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

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

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

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

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

You Think You Know…

8 May

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

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

You think you know, but you have no idea.

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

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

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

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

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

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

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

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

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

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

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

Maintaining The Balance

7 May

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

I’ve been feeling disoriented and out of sorts all day. I woke up very early this morning after a night of virtually no sleep, had to deal with an autism meltdown resulting from a power outage, and then due to circumstances beyond my control, had to skip the long run I’ve been itching for all day.

Because of all of this, when I sat down to write this post, I came up empty when I was digging around in the warehouse of my mind for a topic. All is not lost though, because Facebook came to the rescue. I posted a status update asking for topic ideas, and a friend of mine who is a fellow mom immediately fired off a whole list of ideas, that will pretty much see me through the rest of the month.

If anything, I was left with the opposite problem: too many ideas to choose from.

In the end, I decided on this one for today:How does Mom manage parent time, marriage time and self time while also working outside the home?

How indeed?

Moms in general have to wear many, many hats. Special needs moms have to wear even more, simply by virtue of the fact that parenting a special needs child requires a completely different set of parenting skills to parenting a typically developing child. Add to that the fact that I work a full-time job that involves two hours of commuting each day, and I do all of the admin for my husband’s business. I also make sure the household bills get paid, and I am trying to establish myself as a writer.

It can be very, very hard to carve out time for my husband, much less for myself. But for the sake of my sanity and everyone’s happiness, I have to find a way to do it.

I have tried to stay on top of things through a variety of means. Written daily schedules. Routines. Planning. To-do lists.

All of that helps, but it is not the complete answer. I can plan and schedule until the cows come home, but it all comes to naught without one crucial ingredient.

Commitment to go to bed by a certain time.

It is incredible how powerful a simple commitment like that can be. It cannot merely be a commitment with myself – it has to be a declared intention. I don’t exactly post it on Facebook, but I do tell my husband that I will be going to bed at such-and-such a time. Once I make and state it, I feel obligated to follow through. And so my mind immediately calculates how much time I have, and how I can best arrange what I need to do, to fit within that time.

And you know? It works.

By following this practice, I have been figuring out how to do things more quickly. I have also been spending more time with my husband and getting enough sleep to enable to get up early to go running in the mornings.

I don’t always get it right, as some late night status updates on Facebook will testify, but I am doing a lot better than I used to.

Now, if only I could find the time to follow my secret career ambition of becoming a Mythbuster…

(Photo credit: http://www.flickr.com/photos/leoglenn_g/5789714663/. This picture has a creative commons attribution license.)

Book Review: My Brother Sammy Is Special

7 Apr

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

April 7 – Health Activist Choice: Today, I get to write about anything I like. I decided to take the opportunity to review a book that should really be on the bookshelf of every child who has a brother or sister with autism.

I tend to feel a lot of angst when it comes to parenting my younger son, James. James, who is six going on thirty-two, is the neurotypical child in my family. He is the one without autism, the one who is very socially engaging and never stops talking, even when he’s asleep.

James himself does not make parenting difficult. He is as well-behaved as a boisterous six-year-old boy can be, he is making good progress at school, and he gets along famously with his big brother George when they’re not throwing Lego at each other.

What makes it hard is the fact that due to George’s autism, I have to use completely different parenting styles with my kids. What I do makes perfect sense to me, but it can be hard for a six-year-old to grasp why he is being treated differently to his brother. Although my husband and I try our best to explain things to James, a lot happens that James perceives to be unfair.

And so when I got the opportunity to review a book written specifically for the siblings of children with autism, I wasn’t going to pass it up. Written by Becky Edwards and illustrated by David Armitage, My Brother Sammy Is Special tells the story of a boy who is angry about his brother being different. He doesn’t want a brother who is different. He wants a brother who can talk to him and play with him, and who doesn’t wreck his stuff.

In a beautiful twist, Sammy’s brother has a revelation, and instead of trying to force Sammy out into his world, he ventures into Sammy’s world. And so Sammy’s brother achieves the brotherly bonding that he so desperately craves, but not in the way that he had expected.

Having read the book myself, it was time to test it out on a member of the target audience. I snuggled up with James, opened the book, and started reading. The story, with its flowing narration and beautiful illustrations, engaged James’ attention throughout. He was very concerned about where this brotherly relationship would go, and he was visibly relieved that it all worked out in the end.

My Brother Sammy Is Special is written in language that is simple enough for young children to understand, yet descriptive enough to convey the complexity of the special needs sibling relationship. Although the blurb in the dust jacket says that the story is about a boy with autism, the story itself makes no specific mention of the condition. This makes it flexible enough to be effectively used within many kinds of special needs families.

The book is a great launch-pad for discussion. It flows in such a way that parents and their children can pause to ask questions and talk about aspects of the story without losing the flow. For children who may be bewildered by the special needs of their siblings, the story can serve to provide both comfort and understanding. It also describes practical ways in which a typically developing child can try engage with his or her special needs sibling.

I highly recommend this book for any family that has a mix of special needs children and typically developing children. It is a gem – a treat for parents and children alike.

My Brother Sammy Is Special is available for purchase at Amazon.

Many thanks to Skyhorse Publishing for allowing me to review the book, and for providing the cover image.

Superhero Wannabe

3 Apr

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

April 3 – Superpower Day: If you had a superpower – what would it be? How would you use it?

superhero

A couple of weeks ago I posted something on Facebook about a long training run I had just been on, and one of my friends responded by asking if I run while wearing a cape and a big “S” on my shirt.

Well, no I don’t. It would be highly uncomfortable and let’s face it, people would stare. I don’t want to be responsible for any traffic accidents. And besides, being a distance runner might set me apart in some small way from non-runners, but it certainly doesn’t make me a superhero. If I was wearing an “S” on my shirt, it would stand for “sweaty”.

But what if I was a superhero? What if I could choose any superpower I wanted? What would that superpower be and how would I use it?

As an autism mom – indeed, as a plain old mom – there are so many areas in which I feel woefully inadequate. There are so many things that I wish I could do better, or faster, or with less grief. There are, of course, things I would like to do that in the real world are simply impossible.

And now, for the purposes of this article, I have to choose just one superpower.

The ability to cure autism? This may seem like the obvious choice, but it is not what I would want. If I cured my son of autism, I would be changing who he is. And while I am on a permanent quest to help him with the aspects of autism that cause him pain and frustration, I would never, ever want to change who he is.

What about bottomless reserves of patience? Those who know me well know that I am don’t exactly have a Zen-like aura of calm about me. I tend to get a little fraught at times. But changing that would surely change who I  am, and while I would never claim to be perfect, I’m reasonably OK with the person I am.

No, the superpower that I would order would be the ability to instantly soothe my children. At a touch, I would be able to calm my son from his meltdowns, and in the midst of his inability to communicate that causes him such frustration, I would make him feel safe and secure. I would brush my hand lightly on his forehead, and immediately, he would know that everything is OK, and inner turmoil he was feeling would disappear.

I would use this superpower on my younger son as well. The neurotypical child, the sibling to the special needs child. The one who, while knowing that his brother is different and needs special care, sometimes feels overwhelmed by it all. It is a rough deal, being the brother of a child with autism. My two boys unquestionably love each other, but still, it is hard for the sibling.

With my superpower, I would soothe my younger son when things got too much for him. When something happened that he perceived to be unfair, I would gently stroke his hair, and he would instantly feel a sense of calm. He might not fully understand his brother’s autism, but he would feel that everything was right with the world, and he would feel the love that we all have for him. He wouldn’t feel overwhelmed, and above all, he would know that his brother adores him and never, ever wants to hurt him.

I strive to make my kids feel these things – usually, it just takes longer than I would like.

(Photo credit: http://www.flickr.com/photos/globalismpictures/5723668328/. This picture has a creative commons attribution license.)

My Husband Doesn’t Believe Me

12 Mar

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

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

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

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

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

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

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

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

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

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

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

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

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

10 Useful Skills For Autism Parents

23 Jan

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.

Autism Diagnosis: Blessing, Curse, or Both?

12 Jan

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

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

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

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

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

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

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

Campbell: A Story Of Kindness

15 Dec

Tazz and Campbell

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

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

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

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

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

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

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

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

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

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

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