Guest Post: You Never Know What Their Quirks Will Become

Today’s post started life as an email that my friend Jacquie sent to the autism parenting group that we both belong to.

Jacquie is the mom of two boys, aged 8 and 16, who both have special needs.

Her older son, Eric, has autism. He has his challenges, but as you will see in this post, he is finding his way in the world. I will not say any more – I will let you read for yourself.

8-year-old Justin has RAD (reactive attachment disorder), autism and intellectual delay. He is one of those unreasonably good-looking kids who you just know will be making girls swoon as soon as he (and the girls) hit puberty.

And Jacquie? Well, she’s just a fabulous friend and a fantastic mom. I am immensely grateful to her for allowing me to share this story of Eric. To special needs parents like myself, this is really a story of hope.

Without further ado… over to Jacquie.




When Eric was a baby, the only way you could soothe him was singing.

When Eric was a toddler, he used to stand in the windowsill of his bedroom’s gigantic window and listen to a cassette of kid’s songs sung by kids over and over.  When the tape ended, he would scream until someone came and turned it over and pressed ‘play’ again.  Then he’d scream until we got the hell out of the room.

When Eric was a preschooler, he’d sit in front of Windows Media Player and watch the visualizations you could choose to go along with the music that was playing.  He’s spend hours just watching these graphics move and change with the music.  God forbid you try to distract him.

When Eric was in kindergarten, he developed a musical crush on Shania Twain.  I still shudder to think of that year.

When Eric was in grade school, he started to make music using free music programs like garage band.  It was awful.  I didn’t have the heart to tell him he sucked.

When Eric got to high school, he asked for a professional-grade music-editing software suite, so we gave him that for Christmas. Subsequently we began seeing him only for meals and The Big Bang Theory.

When Eric had a little experience with production, he asked for a Mac, which has superior music production capabilities.  He was taking guitar lessons, piano lessons, and music classes at school, so we thought it was probably worth it.  Subsequently we began seeing him only for meals.  There are days’ worth of The Big Bang Theory episodes on the PVR that have never been watched.

When Eric was a week younger than he is right now, a Danish music promoter contacted him and, based on the free content Eric has put out on music sites and on the the contests he has won with his compositions, offered him a 6 month contract.

When Eric was 12 hours younger than he is right now, we signed.  Eric is now represented by a dance music label in Denmark.

His songs will go up for sale on iTunes, Spotify, Juno, and Amazon.  This company will help him design his logo, refine his sound, and establish a presence in the market.

When Eric was a little boy, we mourned the way music took him away from the world.  Now he’s bringing his music to the world.

(Photo used with permission of Jacquie VonHunnius).


Prince Of Dreams

One of my assignments for last term’s writing class was to write a poem about two characters interacting in a situation of conflict. I baulked at this more than a little. I love to write, and I like to think that I’m good at it – but I absolutely suck at poetry. I struggle to read it, and I struggle to write it. Four hours before the midnight deadline, I was trying to figure out what the hell to do with this assignment. At the same time, I was locked in a power struggle with George, who was just refusing to go to bed. Eventually – EVENTUALLY – he went to sleep, and I returned to my dilemma. As I sat there sipping a glass of Merlot, the poem I had been searching for came to me. This is what I wrote…

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Beautiful mind, gentle soul
The boy is different, yet strangely whole

He speaks with movement; he talks with his eyes
His spirit is pure; he tells no lies

He seems to be fragile, but has a strong will
Potential, desires and dreams he’ll fulfill

Tonight he won’t consent to be led
His mother cannot get him ready for bed

She coaxes, cajoles and softly convinces
He declines with a sigh, the most regal of princes

A thousands breaths later she lays down her child
By now he is sleepy, so tender and mild

She keeps watch by the bed and watches him sleep
The feeling of love so profound, so deep

(Photo credit: Kirsten Doyle)


5 Signs That I’m Approaching Burnout


If you’re anything like me, you occasionally reach the point where your mind and body just shut down to prevent you from overburdening it any further. It’s always better, in my experience, to slow down and take a deep breath before reaching that point. I’m not always good at recognizing the signs,though, and when I do, I don’t always have the ability to prevent the train wreck that’s rapidly approaching.

The tell-tale signs may be different from one person to the next, and I would suggest that at a time when things are sailing along just fine (in other words, don’t wait for the crisis), everyone take a few minutes to reflect on what those signs are. Here are mine:

1. I lose the ability to make decisions. I’m not even talking about big stuff, like whether to move my kid to a different school, or whether to change jobs. I’m talking about stupid things, like what to cook for dinner. Any time I have to decide anything, I’m overcome with a feeling of panic that varies in intensity, but always makes me feel somewhat immobilised.

2) I lose interest in the things I like. If I stop caring about running, or if I don’t want to write, chances are that I’m approaching burnout. There are few things that scare me more than having to force myself to go for a run.

3) Little things annoy me. Things that I wouldn’t notice under normal circumstances make me want to jump up and throttle someone.

4) My relationship with food goes all out of whack. Either I stop eating entirely, apart from the odd nibble here and there to stay alive, or I go nuts and eat everything in sight.

5) Three consecutive hours of sleep counts as a “good night”.

What are your signs of burnout?

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



Today’s prompt in the Health Activist Writers Month Challenge calls for bloggers to post a “vintage” picture of themselves, along with a description of where they were in their journey when the picture was taken.

I don’t know whether this picture classifies as vintage, but it was taken when I was on the cusp of moving from one life to another. George was not yet born, but he was certainly making his presence felt. You can probably tell from the fetching attire that I was in hospital, and I was in the throes of labour. That expression on my face may look like a smile, but really, it was a grimace of pain.

George made his appearance about four hours after the picture was taken. My life has never been the same since, and the life I have now is infinitely richer and more beautiful because of the presence of my two children.



A Mom’s Shameful Regret


He’s been needling me all day.

It’s a cold, rainy day and I didn’t get any sleep. The weather is too miserable for me to go outside for some invigorating fresh air. I’m trying hard to hide the fact that I’m irritable, and for the most part, I’ve been succeeding.

Just another hour to go…

Just sixty more minutes until I tuck him in, turn the lights out and kiss him goodnight. He’ll sleep well tonight. He usually does when he’s been fussing all day. Irritation and anxiety take a lot of energy out of him.

And there has been a lot of irritation and anxiety today. He’s kept on wanting stuff but not knowing how to ask for it. He’s been frustrated by my failed attempts to understand him. He has been pushing his little brother around, because he just doesn’t know what to do with the frustration. Sheets have been ripped off beds. Toy boxes have been turned upside down. Hampers full of clean, folded laundry have been upended. There’s a new hole in the drywall from a headbanging incident.

I’ve been taking it in my stride, talking in low, calm tones to soothe myself as well as him. Earlier I escaped to the shower for a much-needed ten minutes. I’ve been keeping myself going by taking this difficult day in five-minute chunks, by guiltily counting down the minutes until the kids’ bedtime, by promising myself a relaxing glass of wine as soon as the kids have dropped off to sleep.

They’re in their pyjamas now, and I’m preparing their bedtime cups of milk.

He comes up to me and yells something unintelligible. I sigh inwardly and look at him.

“What did you say?” My question comes out more sharply than I had intended.

He walks over to the door, and opens it for the express purpose of slamming it as hard as he can.

And just like that, I’ve had enough. That one small action has been enough to send me over the edge, to be the proverbial straw that breaks the camel’s back.

“I’m SICK of this!” I scream, surprising even myself. “Why can’t you just be NORMAL?”

Instantly, I realize what I’ve said and I feel like the worst mother in the world. This is my son, my beautiful boy. He hasn’t been difficult today on purpose. It’s not his fault he has autism, and he hasn’t enjoyed this anxiety-filled day any more than I have. And I have just yelled at him for not being normal.

I’ve done something terrible, I think to myself.

I look at my child, who I absolutely adore, who I have just thrown such dreadfully hurtful words at, and I wish I could have the chance to take it back.

I didn’t mean it. I wouldn’t trade you for anything in the world.

I sink down onto the couch and dissolve into tears. I am full of self-loathing, and every fibre of my being is wondering what damage I have done, and how much I have set back my child’s progress.

As I sit there sobbing, with my face buried in my hands, I feel a small movement next to me. I look up and he is there, looking at me with a combination of confusion and concern.

“Go give Mommy a hug,” he says softly, and wraps his arms around my neck.

And that makes me cry even harder.

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


Wordless Wednesday: Word Cloud

Word clouds are super-cool things, and my favourite word cloud site is Tagxedo. You can play around with colour themes, shapes and fonts, and have a lot of fun. This is the result of my playing around.

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Guest Post: Surviving Post-Adoption Depression

Today is Guest Post Swap Day at the Health Activist Writer’s Month Challenge! I am delighted to have been paired with Becky, who looks at the world of adoption from a different vantage point to me. I am an adoptee, and Becky is the mom of adoptees. In her blog, Lessons from an Infertile Social Worker, she writes about her journey to motherhood and her life as a parent. Today, she shares an aspect of adoption that really needs to be given some attention.

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When I think about adoption, there is so much to say; I find it difficult to narrow down the topic.  Do I talk about how we came to the decision that the way our family would grow was through adoption? Do I share my journey to breastfeeding my two sons, both of whom we adopted? Do I discuss open adoption, why we chose it, and the challenges and blessings it has afforded me? Do I educate about proper adoption language? Do I ponder how adoption has changed my parenting philosophies? There are so many possibilities.

In my professional life, I’ve talked with hundreds of pregnant women and new mommies about postpartum depression, the feelings, the red flags, how to recognize it in themselves, how others around them could recognize it and be supportive, what can help, etc… I could assess whether a new mommy was experiencing symptoms, and I could diagnose it. I knew how to talk to her about it, and what resources to point her towards. What I never knew was that it was something I could experience. I’d told women for years that a big part of postpartum depression was their out-of-whack hormones. I knew that I wouldn’t have to deal with that thanks to adoption. I was wrong. I did experience it, even without the hormones to blame.

I can’t imagine any child being more wanted than my son. We tried for years to get pregnant and I was thrilled beyond belief when we were chosen by his birth family. I was thrilled to take him home, to put him in his bed, to cuddle him, to nurse him, to rock him, to read to him… But somewhere along the way things changed. Really, it may be more accurate to say that things didn’t change, at least not how I thought they should and would.

I told moms all the time that “over half of new parents don’t fall head over heels in love with their babies right away. You didn’t experience love at first sight with your partner, so why should you expect it with your baby. It takes a while to get to know one another. It will come in time. Don’t feel guilty if it doesn’t happen immediately, but don’t doubt that it will come”. I never even considered the possibility that I wouldn’t experience that all-consuming love for my baby immediately – I wouldn’t have the hormones going crazy, we were prepared, we were ready, we knew what we were doing, we wanted him so much.

I stayed home with him for about 8-9 weeks after he was born. Though hubby shared nighttime duty with me, I was taking 2 graduate level classes and I was still exhausted. In truth, I was at times a little jealous that hubby got to leave during the day (not to mention got to shower and brush his teeth before 3pm). I was rocking the baby one afternoon – it had been a difficult day for me and the 4 week old – when hubby came in from a great day at work. He leaned over the side of the rocking chair and tenderly said, “I never thought I could love anyone as much as I love you, but I sure love this little guy a lot”. I could see he had tears in his eyes though I couldn’t bring myself to really look at him. Because all that was running through my mind was, “well big deal for you. How wonderful for you to get to feel that way?!!!”. All I said out loud was “yeah”.

I was furious. At the time I thought I was angry with him, but I realize now I was angry with myself. Angry that I didn’t feel that way about our son, the baby I had so longed for, the baby I had waited and prayed about for years. Angry that hubby got to feel that way first.  Angry that I hadn’t yet brushed my teeth that day.

But mostly I felt guilt. Guilt that this child deserved all-encompassing love that I wasn’t sure I could give to him. Guilt that I was angry which surely he could sense. Guilt that by not feeling that intense bond and attachment he would be permanently scarred. Guilt that obviously I wasn’t worthy to be a mother, which was maybe why God hadn’t *let* us get pregnant. Guilt. Dark, ugly guilt.

I don’t know when my love for my son became “big”, though I do remember when I realized that it had. When he was about 4 months old, we both had a nasty stomach virus. He vomited in hubby’s mouth (I know, gross, but I warned hubby not to play rough with a baby who had been puking all day) and I thought, “You show him, kid”. I realized we were a duo then, this adorable baby and I, we had something that was just between the two of us, and it was strong and intense. We had that bond. I hadn’t completely failed.

It took me a long time to recognize myself what I was experiencing after my son was born, and quite a bit longer to admit to it to anyone. I’ve now read research and talked with other parents through adoption and I know I’m not the only one to experience post adoption depression. I still carry some guilt about it, but I realize it’s nothing I can change. I also know I have the most awesome son with whom I now have an intensely strong bond. I know he wasn’t harmed by the natural progression of our relationship. I’m trying to forgive myself, which I know is silly because, as I would tell any of the hundreds of mommies I worked with, it wasn’t my fault.

Post adoption depression is real and it is no more a mother’s fault than postpartum depression. It’s not something to be ashamed of and it isn’t a dirty little secret. And, just like postpartum depression, it’s something we need to talk about so that no one else has to feel guilty or alone.


5 Fantastic Posts From Fellow Health Activists


For today’s prompt in the Health Activist Writer’s Month Challenge, I can either promote some of my favourite health activists, or post links to some of my favourite posts written by fellow bloggers in this challenge. I have chosen to do the latter, even though it is so difficult to pick out just a few posts from among the multitude that have resonated with me. Through the other participants in the challenge, I have learned so much about health conditions that do not personally affect me directly.

Here, then, are five posts in the Health Activist Writer’s Month Challenge that have had a particular impact on me.

1) How could anyone not be drawn to a post written by someone who claims to be a former ass-hat? Here is someone who has gone through inordinate amounts of pain, and is facing it all head-on with a delightful combination of frankness and humour.

2) This post, written by someone with Type 1 Diabetes as well as a hefty dose of courage, is truly educational. Most of us know, on an intellectual level, what diabetes is. But reading this post gives you a glimpse into what the life of a Type 1 Diabetic is really like.

3) This blogger lives with Fibromyalgia, and has some pretty lofty and highly worthwhile goals. This post describes what some of those goals are. Hopefully they can become a reality.

4) We all hear ridiculous myths about the things that affect us. In this post, someone with Lupus weighs in on Lupus-related myths – some of which I actually believed myself until reading this.

5) When someone close to you is in the throes of a debilitating migraine, what do you do? Do you know how to take care of them? This post gives some great pointers.

There is another favourite, but I am going to share that with you tomorrow in the form of a guest post written by the blogger concerned. I’ll just give you one hint: it made me cry.



Diagnosis Day: 8 Things I Wish Someone Had Told Me


Do you ever look back on a particular day in your life and wish things had gone differently? If only you’d said this thing, or if only you’d done that thing. We all know, of course, that those “if only” scenarios don’t do us one whit of good in terms of the outcome, but that doesn’t mean we’re not allowed to think of them. Sometimes we can use those lessons in the future, and sometimes we can help other people going through similar things.

One of the most pivotal days in the life of an autism parent is the day of their child’s diagnosis. When I look back on that day, I remember shock, tears, and a sense that a giant constrictor had wrapped itself around me and was squeezing me so tightly around the chest that I could barely breathe.

Realistically, there’s no way to completely cushion a blow like this. But maybe – just maybe – there are some things that would make it easier to bear. Here are the things I wish I had known when I got the diagnosis.

1. The doctor does not have a crystal ball. Any dire predictions that he makes for your child’s future are not set in concrete.

2. If you Google too much too soon, you can drown under the weight of the information overload.

3. Your child is first and foremost a child. Don’t let your child become the diagnosis, the whole diagnosis and nothing but the diagnosis.

4. You may feel as if your reality has shattered, but all that’s happened is that your reality has changed. You have to give yourself the space and time to get used to your new view.

5. Now more than ever, you need to nurture your relationship with your partner.

6. Apply for all the funding and services you can, even if you think odds are stacked against you. There’s always the chance that something will stick.

7. Don’t be afraid to cry. Even if it’s in front of the kids. It’s OK for them to know that you’re human.

8. Know that you can do the whole special needs parenting thing. You may not feel that way in the beginning, but you will. You don’t have to know all the answers – because let’s face it, none of us ever does – just know that you will be the parent your child needs you to be.



Why I Will Never Break Up With Facebook


When I first moved to Canada almost thirteen years ago, the world seemed like a very big place. I had a very hard time adjusting to life in a completely new territory where I did not know a single soul. If I felt lonely, I could no longer get into my car and visit my best friend for coffee. I couldn’t drop in on my parents for an impromptu dinner. I couldn’t call anyone to find out who was going to see which movie or have a drink in which bar. Now, if I felt lonely, I had to sit alone in my apartment in this strange land and just deal with it.

I kept telling myself that this had been my own choice. No-one had coerced me into packing my life into checked baggage and moving halfway across the world. But knowing that didn’t make the process any easier.

Desperate for human contact, I turned to my computer and instant-messaged with anyone I could find online. The most oft-sought-out victim of my off-the-boat neediness was my friend Kane in Michigan, who was endlessly patient and kind even though I must have been a complete pain in the you-know-where from time to time.

That was really the first time that my computer gave me much-needed access to a friend, but it certainly wasn’t the last. At some point over the years, Facebook became an everyday part of life for most people. Admittedly, the word “friend” can be a bit of a misnomer where Facebook is concerned, but I have met some fabulous people online who I count as true friends, even though I have never met them in person. These are folks who have helped me through a pregnancy loss, the death of my father, my son’s autism diagnosis, injuries, illnesses, my bouts of mental messed-up-ness, and a number of other things.

Not only has Facebook helped me forge new friendships, it has enabled me to keep in touch with family members, and with friends I have known for a long time.

It has also provided me with access to an entire autism community. On the days when I want to feel that I am not alone, all I have to do is turn on my laptop, and within a few clicks I am having virtual conversations with people who give me advice, information, encouragement, or whatever else I might be needing. If I’m having a really good day, I am able to use my social networks to help other people who might be feeling overwhelmed or discouraged.

Because I’m human, and humans are given to complaining, I do like to hate on Facebook from time to time. I gripe about having to constantly vet my privacy settings, I lament about unsubstantiated myths and rumours being perpetuated, I whine whenever my timeline’s appearance changes. But at the end of the day – as much as I hate to admit it – I have become reliant on Facebook. Because through Facebook, I can reach so many people who really and truly matter to me.

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