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Sticks And Stones And Words That Hurt

May 31, 2012 By

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

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

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

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

But.

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

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

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

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

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

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

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

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

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

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

May 30, 2012 By

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

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

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

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

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

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

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

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

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

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

Or was he?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

May 29, 2012 By

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

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

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

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

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

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

Two down, one to go.

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

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

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

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

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

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

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

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

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

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

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

Filed Under: 2012 Wordcount Blogathon, autism, Choices, family, Genetics, parenting, Siblings, Special Needs Tagged With: , , , , , , , ,
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Guest Post: Animals And Autism

May 15, 2012 By

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.

Filed Under: 2012 Wordcount Blogathon, Animals, autism, Guest Posts, Healing, Special Needs, Uncategorized Tagged With: , , , , , ,
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A House Full Of Love

May 14, 2012 By

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

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

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

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

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

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

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

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

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

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

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

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

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

May 8, 2012 By

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

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

You think you know, but you have no idea.

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

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

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

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

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

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

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

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

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

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

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

Filed Under: 2012 Wordcount Blogathon, autism, Children, Coping Skills, parenting, Special Needs, WEGO Health Tagged With: , , , , , ,
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Maintaining The Balance

May 7, 2012 By

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.)

Filed Under: 2012 Wordcount Blogathon, Balance, life, Lifestyle, Marriage, parenting, Special Needs, Working Tagged With: , , , , , ,
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Book Review: My Brother Sammy Is Special

April 7, 2012 By

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.

Filed Under: autism, Brothers, Health Activist Writers Month Challenge, Siblings, Special Needs, WEGO Health Tagged With: , , , , , , , ,
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Superhero Wannabe

April 3, 2012 By

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.)

Filed Under: autism, Brothers, Emotional stability, family, Health Activist Writers Month Challenge, parenting, Siblings, Special Needs, Superhero, Superpower, WEGO Health Tagged With: , , , , , ,
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My Husband Doesn’t Believe Me

March 12, 2012 By

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

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

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

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

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

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

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

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

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

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

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

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

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

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