Autism · Family · growing · parenting

Running Out of Time

One of the benefits of living in an area where you are bombarded with wintry weather is the beloved snow day. Happiness abounds when school is closed for the day because of weather or road conditions. Today was such a day – while the sun was shining bright, the snow drifts were high. And even though we have a snowblower, my boy got up and dressed and donned his winter gear to pick up a shovel and attack the driveway.

As I was sipping my tea on the couch in the warmth of my home, I was watching him do this simple chore. (Or perhaps not so simple, depending on your perspective!) As he was shoveling, I marveled at his strength to be able to lift such a large scoop to dump the snow onto the giant snowbanks surrounding the yard. And that’s when it hit me.

I am running out of time.

This year, my oldest son will be 12. The last of the younger years before he morphs into a teen. I have been terrified of the teenage years my whole mothering life – mostly because I wasn’t a terrific teen. I pushed buttons. I challenged. I wanted to do my own thing. These are the things that teenagers do, before they blossom into young adults. As a mother, it scares me.

When you are dealing with sweet little babies, or chasing after toddlers you never think that period of life will ever end. People may tell you, but you don’t believe them. You’re just desperately thankful that you’re speaking with someone over the age of three. And then it happens.

Once they hit school age, the years just seem to fly by. I know there are 365 days in a year, and sometimes days and weeks and even months feel long. But time is a funny thing – despite all that, the years keep rolling into each other and before you know it, you’re running out of time.

Running out of time is where I am right now.

 

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Just yesterday I received a note from a disgruntled teacher who was unhappy with me because I allowed my child to come to school for his swimming club without his swimsuit and towel. Moreover, there was an accompanying note with it saying why I wouldn’t be bringing it to him if he asked. I’m sure that sounds terrible, but before you slap me with the “worst mother ever” label, please consider one little word – responsibility.

Responsibility is a such a small word for such a large thing. Just a handful of letters, but they hold powerful meaning. Responsibility is why I am running out of time.

When my children were very little, it was so exciting when they learned new things. Just like every other parent on the planet, I was eager to record their sweet little voices singing their ABCs for the first time. (Although, if we’re being honest, in the case of Aiden it was more like his first time going through a set of flash cards). Every success was celebrated.

When they began school, it was so exciting to witness them learning to read. A lot of time and love and care on the teachers behalf went into that – and we just sat back and helped them with a word here and there along the way. Still, ever success was celebrated.

But here’s the thing – we are teaching our children at home too. We teach them how to use a toilet, how to brush their teeth and tie their shoes. We teach them how to zip and button, how to hold a fork. In Canada, we teach them how to pull on snowpants, and to never leave the house without mittens and a hat when it’s cold. And when they get the hang of it, we celebrate their success.

But still, we are running out of time. Because no one stops learning at any point in our lives. And there is more to our job as a parent than sending them to school to be educated and teaching them self care. We also need to teach them responsibility.

So when I got that note from the disgruntled teacher, it irked me a bit. But afterwards, I decided she maybe needed a little bit of grace because she has a young son. She likely hasn’t reached the stage I am at with my sons right now, which is why she likely already slapped that “worst mom ever” label across my face. So I just reminded her why he didn’t have his swimming gear – responsibility.

On Wednesday it’s laundry day for my kids. They are responsible for bringing their laundry to the laundry room so I can wash it. The older one can even do his own laundry if I ask him to – because I already taught him how to do it. Teaching and responsibility go hand in hand because it’s our job to teach our children to be responsible. But sometimes, when they miss the mark a little bit, they need a reminder. So on Wednesday, when I reminded my son not once, not twice, but three times to take his laundry down to be washed – and he didn’t – I told him there would be no swimming. I stood my ground and told him that I wouldn’t be sneaking in after his lights were out and grabbing his laundry so I could wash his swim shorts. No, because that’s not teaching him to be responsible. Instead, he had to suffer through missing swim club because he didn’t act responsibly. Will he ever miss swim club again? Maybe. But hopefully not.

Here’s the thing – it’s not just about the swimsuit. It’s about learning there are consequences to your actions when you lack responsibility, just as there are when you do something you know you shouldn’t do. It is such a valuable lesson that children need to learn before they leave the nest.

And that’ why I realized today that I am running out of time. Because he’s almost 12 which means he could leave the nest in as little as six years. And if those six years are anything like the first twelve, they will fly by in the blink of an eye.

So I need to be a little more aggressive when teaching responsibility, even though I might be labeled as the worst mother ever. I also need to finally hand him a knife even though I am afraid he might slice his little fingers so he can learn to cook. I need to continue to teach him how to be respectful. I need to treat women. There are lots of things I need to teach him before he becomes a young man. And that’s terrifying. (It’s even more terrifying when you do the math and realize you only have two extra years to add on your younger son’s timeline).

I’m running out of time. But as I sit here and type away, I see my tidy kitchen. I see the front hall where the shoes are perfectly lined up and the coats are hanging on the hooks. I see the straightened up living room. And I smile, because I didn’t do any of those things.

Time is running out, but I’ve got a head start. I think it’s going to be okay.

Autism · Family

When You Feel Like You’ve Blown This Whole Mothering Thing

My son is obsessed with liquids. I don’t know what it is about them that he likes. But he just can’t stop. Like that time he poured the oil everywhere and turned the stove on. Or that time I decided to treat myself to a more expensive body  wash only  to find half the bottle on the floor of the shower when I was ready to use it.  The time he spilled the laundry soap on the floor. And then a few days later, all over the front of the dryer. What a mess that was to clean up!
The thing with liquids is that he loves the sound they make as they spill. He loves watching the different consistencies of liquids pouring all over different places in my house. And do you want to know what else makes a great splashing noise when not disposed of in its regular environment? Urine.
So that is how my day started. I don’t know about you, but the words “I’ve had an accident” cause me to pause. What kind of accident – and was it intentional or not? Then I hurry up the stairs to strip the bed or empty the toybox, or mop the floors or all of the above. The boy gets a bath and Mom gets to clean up. Again. I’ve learned to be gracious when it comes to urine all over the place – even though every time it happens it’s like fingernails grating against the chalkboard of my mind.
The rest of the morning  I was wrapped up in a task I expected to take an hour. I ended up missing breakfast and rushing through lunch, which isn’t all that uncommon for autism parents. In the short hour or two before the kids got home from school I quickly fired off some e-mails, tidied the kitchen, and ran a few loads of laundry through the wash. And then it dawned on me. Aiden has a school project due tomorrow.
And then worse…he hasn’t even started it yet. I don’t know about you, but when I was his age and a project was assigned at school I organized my thoughts and then started into it right away. Usually it was finished a few days before it was due. I was in no way prepared to have a son who is, let’s face it, a procrastinator. So when he walked through the door, sat down on the couch and picked up the TV remote, I came undone a little bit.
Okay. I came undone a lot. My day had not gone as I had planned and now I had to help someone with an assignment that could have been done by now. I was stressed and empty. And hungry.
So I started ranting and raving about how laziness was unacceptable and how he needed to learn how to time manage. I went on and on about how he needed to be more responsible and that I didn’t want him to procrastinate ever again. I even made up a new rule about how when he was given an assignment he would now have to work on it every night until it was complete. And all that ranting and raving? It didn’t do either of us a bit of good, we both got upset, and I am pretty sure the whole point got lost on deaf ears before it even left my lips.
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Oh, that God would give me a mouth that knows how to stop before it begins. While nothing I said was hurtful, it wasn’t very constructive. My little boy couldn’t figure out why I was so upset, and I just couldn’t stop yammering long enough to let him get a word in edgewise.
In the end, he got the project complete. Granted, not without me holding his hand and directing him on what was expected. Except, here’s the thing – what I didn’t see before I started my tirade was that he had already been thinking about his project. He had already collected his thoughts, and had some pretty interesting and unique ideas to bring forward. He just was unsure of how to get them out and how to compile them into a report expected by his teacher. He had done the ground work long before I had ever opened my mouth.
Have you ever felt like you may have blown it in a mothering minute? If the goal is to teach, equip, strengthen and encourage – I definitely failed today. We live in a world where sometimes the cookie cutter children are expected.  I of all people should know that my children just aren’t capable of being that kind of kid. And here, in this crazy frustrating moment I forgot it all. All that I knew about expectations. All that I knew about autism. I had forgotten, and had unrealistically put expectations on my son to time manage, to organize and to get his project done. Autism aside, these are all learned skills. I mean, he is only in grade six after all.
Reality set in and I found myself totally wrong and in need of forgiveness. So I had to seek him out and apologize for my irrational thinking. We had a great conversation about how to move forward. Since communication is not his thing, I will need to be more diligent myself. I don’t want to hold his hand for a lifetime – at some point he is going to need to run on his own. But maybe not  yet.
So as I sit here reflecting on my behaviour, I can see his report peeking out of his school book. I pull it out and look at the assignment –  I look through his eyes for a moment and see an assignment he would not be thrilled to have to complete. A science project asking him to create a new animal that has to have adapted to life on a certain, uninvented planet. His eyes tell me he is fustrated because it is not real science – it is entirely fictional. His eyes tell me he is frustrated because there is a creative element to it, having to design a new animal and all of its features and its home. His eyes tell me this project will be hard for  him.
And then I take a sip of my latte and think of all the praise I could have given him. Praise for struggling through something difficult to come up with an animal. Praise for being a flexible thinker and not dwelling on the fact that its habitat was not true or factual. Praise for knuckling under and getting the project done. And in this moment, I wish I could have a do over.
Sometimes do overs are possible, and other times they aren’t. But at the end of the day, I know we love each other. I know he doesn’t hold a grudge and neither do I. I know we can work together to help him get to where he needs to be. I know that we really and truly are flying by the seat of our pants.
And like I tell him when he has made a bad choice – tomorrow is a new day and a great opportunity to start fresh.
Family

It Is So Hard to Say Goodbye ~ A Personal Post

Today I found out that my Grandmother is dying.

This brings on feelings of deep, absolute grief. And also deep, absolute relief. We have had time to think about it over the years – it seems uncanny but almost as if she had nine lives. Every time things seemed to be heading that way, she would make a quick recovery. Much to our relief and delight – but these days, not to hers. She just wants to go home.

My sweet grandmother is 94 years old, and she has lived a rich full life. Born in the roaring 20’s, when the world was full of promise and rip roaring excitement. (Perhaps a little too much!) She lived as a child through the Great Depression of the 1930’s when she could count the peas on her plate and watched her mother lovingly stitch her only dress together wearing it inside one year and outside the next. She was a beautiful young woman in the 1940’s, and after the war ended one of the most exquisite brides you ever could see. The 1950’s brought her a full household of children and a cross continental move. Or two – possibly three. In the next three decades she would move 23 times to many different countries in both North and South America as well as Europe – all part of life as the wife of a successful business man. The 1970’s and 1980’s brought her sweet grandchildren. And sadly, in 1987, the loss of her beloved husband. But the next thirty years after that, she lived. Oh, how he lived.

Mr. & Mrs. Gilbert
July 28, 1945

I loved my Grandpa very much. He was my very first best friend – oh, how I loved him. I was nearly five years old when he went to Glory and just about to gain a new baby sister and start my kindergarten year. The family felt his loss deeply, but one would argue not so deeply as my Grandma and I. I think it was our first bonding experience. And one of many…

The grief of losing her grips me like I can not even express. So constant in my life, she is like a second mother to me. But there is peace and there is joy in the memories. And so, I am going to share the memories. Beautiful memories.

I remember basking in the sun on her plastic reclining lawn chairs – the hot surface sticking to my skin as we watched the waves on Lake Simcoe roll by. A pitcher of iced tea beside us. I remember just laying there beside her as my Mom fed my baby sister and my Dad watched my brother swimming. (And later probably cleaning up his bloody feet – there were so many zebra mussels – ouch!)

Her joy – sweet joy – when my brother was born.  He didn’t even have a name for three months (back in the day when that was okay) and everyone addressed our Christmas cards with our names and “no name baby.” How he loved to hold him. Even when as he grew he really became quite the mess! She did not approve of our nickname for him “the grubby toucher” – but we called him that anyway.

Every Easter, she would come and buy us all new clothes for church. Imagine the excitement of a little girl as she opened her closet to look at the likely ridiculous frock with lots of lace and flowers – and a matching hat – and waiting with baited breath for Easter Sunday to finally arrive. And when it did, a Laura Secord chocolate egg would be waiting with my name on it. She did everything with class.

Our Easter Outfits 1988

Speaking of class, everyone always knew when she was out and about because she had a cranberry red Cadillac with white leather interior – it was hard to miss. Everywhere she went she would wear a hat. Kids at church would call her “the hat lady” because she always had a hat to wear. I remember sitting on the floor of her walk in closet marvelling at the many hats she had – hat boxes everywhere. Oh, how we loved to try them on. (Many years later, my own sweet son would fill an afternoon trying on some old hats in her basement laughing as he put hat on top of hat on top of hat.) I now have several of her hats in my own closet. Perhaps I should put one on.

My favourite childhood memories are from the time we spent at her cottage. I can still picture the plaid covered couch, the orange fuzzy carpet, the blue toilet – clearly your 1970s special. But so many memories. Campfires, swimming, reading books, chasing the chipmunks. Grandma loved watching us swim and told me that I swam like a mermaid. After that I would pretend I really was a mermaid, with long beautiful red hair, like Ariel. Every girl’s dream in the early 1990s.

Grandma was an amazing cook. She put on the loveliest dinners. When I sat at her fancy dining room table, I felt like a member of the royal family. Not only did she make the best lasagna I have ever had in my life, her pumpkin pie recipe is the only recipe that feels like home to me. There was, of course, the incident of the peanut butter and relish sandwhiches. Maybe she just needed to get groceries and was feeling desperate, or maybe she actually liked the taste. I wasn’t entirely bad…but it was absolutely memorable.

Not only did she know how to cook – she knew how to decorate. She really did miss her calling as an interior decorator. One day when we went to visit her, we gasped at the sight of a deep and beautiful red wall in her dining room offset with a vintage lookng wallpaper in white and red. What was she thinking!? Clearly she knew what she was doing, because three months later it was all the rage in the interior decor magazines. I often sought her advice in my home decor plans. When I walked down the stairs today my heart was caught in my throat as I saw the walls – she helped me pick the paint. Right now I never want to paint over those walls.

Not only did she have a knack for decorating, she had pretty classy fashion sense. One year for my birthday (I think I was 13) she gave me a pair of jeans. Not your typical blue jeans, but a pair of creamy taupe jeans with dusty rose roses emblazoned all over them. “Thank you, Grandma, I love them!” I said as I unwrapped them. Then later, out of earshot, “These are so ugly and I will never ever wear them!! YUCK! What was she thinking??” Then a few months passed and I noticed something on a celebrity. I wore them until they needed to be thrown in the trash.

When I was in middle school, we had Grandparents day at school (in Ontario private schools elementary was K -8). I was not a very popular girl, though I longed to be. Chubby and with a different last name I was absolutely the odd one out. I was not cool. AT ALL. Until Grandparents day. When my Grandma pulled up in her fancy red Caddy. She stepped out dressed to the nines, as always. And then the whispering began. Instead of the snickering I was used to, I could hear amazment, awe and wonder. Just whose grandmother was that, anyway? Were those giant diamond earrings real? Look at that car! It was my only moment in glory as I proudly stood up and said, “Mine. That is MY Grandma.” Laterthat day, she had her own moment in glory as she danced the Macerena in front of the entire school. And of course, she did it with finesse.

When I was in high school I remember coming home from school and finding Grandma there. It wasn’t surprising to see her. I think part of the reason why we were so close is because she was so constant in my life. This particular evening, we were having tacos for dinner. They were a huge family favourite (still are in my house.) Even though she lived in Mexico, Brazil and Colombia – she had somehow managed to avoid tacos. Until that fateful night. We gulped ours down in a flash and then watched as Grandma tried to daintily eat her tacos – and finally gave up and asked for a fork.
Moving to New Brunswick was hard because we were leaving Grandma behind. Everyone cried. Not too long after we had moved, she came to visit us there – her first of many visits. I had joined the swim team for the school that I attended, who conveniently had a pool in their building. During her visit, she decided to come and watch me at swim practice. I had my head in the water and was busy working on the butterfly stroke when I heard the same kind of murmurings I had heard that day back in middle school. Only this time, they were saying, “who is that lady? It looks like the Queen Mother!”

After that visit, I didn’t see Grandma as much. I moved off to school and was living the dream. Before long I was graduated and in University. When I could, I would go back to visit. It was always lovely to see her. She was still part of my life. She was ever present in my life and in my heart, filling the broken places with love and a handmade quilt. That quilt is now on my bed – a beautiful reminder of her love.

The quilt before she packed it up and mailed it to me

 

The quilt arriving in New Brunswick
It wasn’t the only handmade gift from her. She was a talented seastress and made me many dresses. But my favourite was the last. When I graduated from University she sent me a beautiful gown that she had handmade for me so I could go to the graduation formal. She knew I didn’t have anything in my closet and let me tell you, that night I felt like the Queen herself.
I have had many sweet moments with her over the last decade, as I have brought my own children into the world. They were – still are – such a joy to her. One of the most beautiful things about her love for me is that she has constantly upheld my family in prayer. Understanding that we bear a heavy burden, she has lifted us in prayer over and over and over. I am going to miss her prayers. I am going to miss her constant love – although it is so deep rooted inside of me now, that even when she is gone, it will remain.
Now I sit here, on a rainy day, with a soul as heavy as the clouds. Preparing myself to say goodbye to someone I so deeply love. And at the same time, feeling happy for her as she will soon be perfect and whole and out of pain and in the arms of her Father. Most of all, feeling grateful that I am so blessed to be her granddaughter. I only pray that I will someday be half as classy, half as beautiful and half as talented as she is.

I love you so, Grandma. And some day we will be together again, raising our voices in praise together. Until then…until then.

 

 

My all time favourite photo – me, Mom and Grandma
All of us in 2013

 

My last picture with Grandma
Autism · Family

We Are An Autism Family

 

Today is World Autism Awareness day. There are campaigns all over the place to “light it up blue” and wear blue today. It is a nice idea and I am all for it. However, sometimes there needs to be just a little bit more. I have lots of people who come to me and ask about the kids and then confess they really don’t know what autism is.  What is it, anyway? Autism is tricky. It can be many things. It is different in every child.

My two children are so intensely different from one another. So much so, in fact, that we didn’t even know Micah had autism until he was in grade two. Partly because he was so different from Aiden, and partly because managing Aiden’s situation was pretty much a full time job. So much so that one night when Micah was in grade one I sobbed and sobbed because I could see he was struggling in some areas and didn’t know how I would deal with helping him while Aiden was desperately needing me to help him through a difficult time. Autism is hard.

At the same time, I look around and see other autism parents and my heart breaks for them because their children are more challenging than mine. I see their lives and I feel broken for them because it is so much harder. But really, we are all in this together.

I can’t tell you what autism looks like as a whole. I can only tell you what it looks like in our house. It’s not always a pretty picture, but you know what? It is beautiful.

Aiden 

 

Aiden is ten now. We received his autism diagnosis when he was 6. You can read more about it here. This kid – he is special. I know everyone says their children are special, and they are. But this one, he is amazing. He is smart and he makes us laugh. SO much. He just says the funniest and most random things ever.

His challenges are difficult. As is common with autistics, he can’t really socialize well with other children because he doesn’t really know how. Most kids would just walk up to someone they think they might like and just start talking or join in to their game. Aiden would be more likely to whap them with a pencil or pull on their clothes. He once poked someone with a stick because he thought that way they might play with him.  He is growing so much in this area, and will now work hard on communicating with people vocally, which is a relief. But if he is stressed or overwhelmed at all, he falls back into what is normal for him.

He is incredibly smart, but he has behavioural issues that hold him back from being able to learn at his level. Sadly, sometimes he becomes bored with work that is too easy for him and will do something out of frustration which really makes the situation worse, not better. He tends to be aggressive at times, which is heartbreaking because he has a heart of gold and would never intentionally hurt someone for the sake of hurting someone. It just sort of happens. Unless you have sat in a room being confronted with what your child has done, you can’t ever know what this feels like. It is not pleasant. This past fall, I actually removed him from school for a two week period just to give him a break. If we are being honest. it was to give myself a break too. All of this is so hard on a mother’s heart.

Some mornings, he wakes up screeching. For no particular reason other than his enjoyment of the sound of his voice and letting us and the whole neighbourhood know he is up and ready to face the day. And let me tell you, a ten year old screams like a girl. Pass me the ear plugs.

He remembers everything. This is both good and bad. Good, because if I can’t remember where I put something I just ask him and we can usually track it down. Or if I can’t remember how much I spent at the store I just ask him and he knows. He can remember events as far back as when his brother was born and he was two years old. Vivid memories like pictures. He can tell me what we had for breakfast three months ago. It’s bad because I worry he will remember my failings. If he does, he doesn’t say anything.

Sadly, he also struggles with impulse control. He has a hard time controlling his body. Or he will do things with good intentions, but they get a little out of hand. Sometimes these things can be dangerous. He currently loves liquids and pouring out liquids, so it is not uncommon for me to walk into the laundry room and find laundry detergent all over the floor. Or step into the shower and find it’s covered in shampoo or conditioner. The worst, though, was when he decided to make me breakfast and poured a whole bunch of cooking oil in a pot on the stove, which of course spilled all over the place. And he was just about to turn the burner on when we caught him. Yikes!

That’s what autism looks like for him. But I can’t tell you the negatives before telling you the positives. Because he isn’t only autism. It is part of his makeup, but it isn’t him.

He loves. He deeply loves people, and they just can’t help but love him back. He doesn’t hold it back in any way, ever. (Which could be a problem when he starts to have serious crushes…Lord, help us!) He just puts it all out there.

He prays for everyone he knows. No matter what their situation or whether they are believers or not. Sometimes, we will be doing something and he suddenly stops to pray for someone. It seems out of the blue, but it really isn’t. Later, we will hear that someone was going through something and it is as if God says to Aiden, “pray for them right now” and he is obedient. That makes a mother’s heart so proud.

He is creative, which is not always common for people with autism. He loves to draw and will make very interesting works of art. A few years ago, during a particularly trying time at school, he had a drawing chosen to be displayed in a local art gallery. It was entitled “Our House” and was his rendering of the new house we had bought. He is forever going through art supplies. But it makes him happy, so I am forever replenishing his supply.

He has a heart to serve. If he hears of a way he personally can do something for someone else, he does not hesitate. He would happily pack up some of his prized possessions if it meant someone else could have happiness. Last year, he and his brother chose half of their beloved stuffed animals and we washed and sent them off to the Canadian Forces for them to pass out on missions where they might encounter children who might need a little love. He also loves to help out collecting up dirty dishes after a church dinner, helping to organize the salt and pepper shakers, putting away the tables and chairs. He just wants to be a servant in whatever way a ten year old can.

He is my heart.

 

Micah 
 
Micah is eight. We only received his autism diagnosis about a year and a half ago. I blogged about it here. Oh, Micah is my son. He is so much of me that it is ridiculous. Both the good and the bad – but mostly the good, I think. He’s a great kid and so special.
Micah’s challenges are numerous. In addition to an autism diagnosis, he also has global developmental delay, severe ADHD, and a non verbal learning disability. He has many challenges, but he is a superstar at rising above them. He has grown so much in the last year and a half and it is so encouraging.
The most obvious (and likely most annoying, if we are being honest) thing about Micah is that he is LOUD. He does not have a volume button. It is difficult to turn him down. It is hard on the head sometimes. If you have never heard him, you have no idea what I am talking about. Someone once described him as “louder than a 747 coming in for a landing.” I am not sure if that is quite accurate, but it might be close.
Micah has an easier time playing with other kids, but he has a hard time knowing what to say and what not to say. If he believes something with all of his heart, he can’t turn it off and that can be a problem when trying to communicate with other kids who might not share his beliefs or ideas. He has been bullied in the past. I know one day in the spring I went to pick Micah up from school and his teacher was almost in tears because some of the kids had taken gravel and thrown it down his shirt and smushed it into him. Micah was okay because he bounces back so easily (and he likely doesn’t even recall this). But his teacher was broken about it, and so was I.
He obsesses over things. Right now he is currently obsessed with puffins. You know, the cute little sea birds? Well, he is so obsessed he wants to be one. He has cried himself to sleep at night because God did not give him a beak or wings and he just wants to fly. He pretends he is a puffin. He even calls us “mother puffin” and “father puffin.” His favourite show in the whole world is Puffin Rock (a Netflix original series) – which is a super cute show, but not when you hear about it all the time. He knows a lot about puffins and needs to know more. He is desperate to know more. Obsessions are common for autistics, but it can be hard for everyone around them.
Micah had a hard time reading facial expressions. He is getting a better handle on it now, but he is not really in tune with why other people may be feeling the way they are feeling. For example, if he hurts someone, he might say “why are you sad?” He doesn’t always know his part in making people experience different emotions. It can be tricky sometimes.
One of the most challenging things about Micah is that he is always so distracted. This is more the ADHD than the autism, but it can come into play for autistic children as well. One of those grey areas. Micah just loses focus so easily. If you come to our house and he is walking around naked, please understand we have been trying to get him dressed for a half hour. Since he is 8 years old and can dress himself, we struggle with having to physically dress him ourselves, but sometimes that is what it takes.
That is what autism looks like for him. But like I said about Aiden, it doesn’t make up everything about him. There are lots of positives to.
The best thing about Micah is his never ending joy. He is almost ALWAYS happy and has been for his whole life. He sees the good in everything. If he is temporarily upset about a situation or circumstance, he almost always is able to wipe his tears and find something positive. This is a skill that not everyone has, but I am sure everyone wants to have. I like to say Micah is eternal sunshine, because he is just so happy. He is exicted about everything. So much so that when I pick him up at the end of the day at school, he is busting at the seams to tell me all about whatever he has learned or something fun or cool that happened that day.
Another amazing thing about Micah is that he loves, just like his brother loves. Even at 8 years old, he just can’t wait to snuggle with you after school. He just hangs off of you sometimes. And after a particularly hard day, that is just what you need.
Micah is so imaginative, which is not usually common for autism. (In fact, this is one of the reasons he had a late diagnosis – we didn’t think he could possibly meet the criteria because of his amazing imagination). He can take a scrap of paper and play with it all afternoon because it means something to him. He could find a bottle cap and that is his baby puffin for the day. He can tell amazing and exciting stories. I just love to read his creative writing, because it is seriously the best. He has dreams and ideas galore.
He works really hard once he sets his mind to it. He is dedicated, even when he doesn’t want to be. We have daily chores for the kids, and even though he grumbles about it – NO ONE can clean and organize the front hall like our Micah can. He is a superstar!
Yes, we are an autism family. We are fully aware of what it is and how it presents itself. We know the struggles as if they were our own. Because they kind of are. But at the end of the day, we are just like everyone else. We love our children, we want the best for them, and we are willing to fight for them. We pray they will grow up to love and serve the Lord. We pray they will experience many of life’s blessings. Just like any parent would for their child. We are an autism family, and we wouldn’t have it any other way.
 

 

Psalm 127:3 “Children are a gift from the Lord, they are a reward from Him.”

 

Autism · Family

Non Verbal Learning Disorder

Along with Micah’s autism spectrum disorder diagnosis, he was also diagnosed with a few learning disabilities. At the time of his diagnosis, I was a bit overwhelmed with the laundry list of things that was “wrong” with my child – so it has taken awhile to really dig deep into what all of that means. I really just needed time to breathe. And love my Micah for the little guy that he is.
Goofiest.Kid.Ever!
One of the learning disabilities he was diagnosed with is called Non Verbal Learning Disorder (NVLD). Now that we’re a bit more settled with life and loving two ASD kids, I decided to look into it a bit more. Part of me is glad I did, and part of me wishes I didn’t. It really is a lot worse than I thought, and covers more than just what he might deal with in a school setting.
First, the name is a tad misleading. Non verbal doesn’t mean not verbal – in fact, people with this talk ALL of the time, to anyone who will listen. Anyone who has ever met Micah will know that is true. I can’t take the kid anywhere without him grabbing hold of a random stranger and spilling his life story or something exciting that has happened to him that day. It is just what he does.
Secondly, children with NVLD sound quite intelligent because their vocabulary is top notch. Many people have told me they are surprised and delighted at the words Micah uses – they’re not the average second grader words. He uses words such as ascertain, simultaneously, and congregate properly and in the correct context. He understands what they mean. It is not uncommon for him to slip words such as these in a sentence. I always thought it was because I love words, and have always spoken to the boys as if they’d understand – knowing if they didn’t, they’d ask, Just last week we were discussing Aiden’s first research project and I was so delighted with the fact my son was doing something I loved so much, I said it was “monumental.” Micah piped up, “what does that mean?” So I explained it was a word to describe something important in one’s life. The very next day he went to school and told his teacher, “I have learned how to properly zip my coat. This is monumental!” We laughed, because it is always cute to hear small children use big words.
Speaking of zipping up coats, by the time most children reach the end of grade two, they should be able to completely dress themselves. Many days I need to assist Micah with dressing because he lacks the proper motor skills to do these things himself. Fortunately, we have had a wonderful occupational therapist working with him this year and he has had monumental successes. (See what I did there?) At the beginning of the school year, he could not zip up his coat, he couldn’t button his pants or a button up dress shirt. With lots of practice and different skills he has learned with the occupational therapist, he is now able to do all of that by himself. Next, we need to work on putting shoes on the right feet and then possibly learning how to tie shoelaces. Lack of motor skills also translates to a child who will often fall because of improper balance, as well as lack of coordination. So, even though he knows how to properly dress himself, he still struggles every day.
One of the major disconnects for children with NVLD is they learn by hearing and not by seeing. For example, a typical child might learn about worms by digging into the dirt and finding them, squeezing them, playing with them, etc. Most preschool children are very hands on. While a child with NVLD might enjoy a similar experience, they don’t retain information unless they hear it. They might learn more if someone explained the entire process for them, instead of actually digging through the dirt to find the creepy crawlers.
In the same respect, NVLD can mirror ASD in the way it has an effect on social behaviours. Most people learn how to socialize by doing (with trial and error). These children with NVLD would learn better by hearing about how to properly behave rather than doing. For example, if they were playing side by side on a playground with another child, and the child starts taps them in a game of tag – the NVLD child would struggle to understand what was happening. There are many typical playground games and behaviours a NVLD child might never understand, so they prefer to play alone. Other children think of them as odd, because they fail to respond to play in a typical manner.
Academically, children with NVLD have a much harder time with written work, especially experiencing difficulty with handwriting and printing. My sweet Micah loves to tell stories. He is a fantastic story teller, and has grasped onto the writing structures. He often says when telling a story he needs to have “a strong beginning, a mighty middle, and an excellent ending!” These are strategies he has learned in school this year. However, when it comes to physically writing out a story, so much gets lost in translation. What was once a wonderful story about a magical penguin turns into a page with incomprehensible scribbles.
Similarly, children with NVLD can generally learn to read, but will sometimes have difficulty understanding what they are reading about. Recently, we were reading a book about sharks. The front page had the title and a photo of a few sharks on it. Micah said, “today we will be reading about fish called Sharks.” Now, I know my son knows what sharks are because he has seen Finding Nemo, and many other television shows with sharks. We have had conversations about sharks, and what they do. But it did not register with him at all.
He went on to read his book about the different kinds of sharks and what they do. At one point, he asked me about a picture that captured his attention.
When he was finished his book, I asked him what was his favourite type of shark. He couldn’t answer the question, even though he had just read the book. I couldn’t believe it, so I took the book and read it to him. When I asked him the same question, he immediately answered, “a hammerhead shark!” It made me realize then and there, for every homework assignment he ever had, I would have to read aloud to him so he would understand what he was expected to do. 
Children with NVLD will also have difficulty in mathematics because they struggle with problem solving. It is difficult for them to grasp the concepts and come up with mathematical reasoning. This is possibly the most stressful and worrisome part for me – there is a reason I write. I am not very good at mathematical problem solving myself. Right now, I am so thankful that God has blessed me with a mathematical whiz named Aiden who will always be available to help his brother with math homework. Praise Jesus!
Emotionally, the child with NVLD can easily be overwhelmed and prone to tantrums or meltdowns because they are so frustrated with themselves. I know this is true for Micah. Frankly, I feel like having a meltdown myself after learning about all of this…
We try to raise our children the best way we can, despite the challenges they face. They both face so many challenges every single day. Especially Micah. In fact, now that I know what I know I am patting myself on the back that I toilet trained this boy, even though he was almost four years old by the time he got the concept. I have had doctors tell me they are astonished he was that young. I thought I was losing my mind at the time…
What can we do as parents to help? Celebrate every accomplishment. It is so much harder for Micah to have successes other children easily obtain. One way we have celebrated in the past and continue to do so is to throw a reading party every time he reaches a new reading level. We always have a supper of his choice and also a cake. It really has to be a huge deal in our house, because it takes so long to get there. We want to encourage diligence and praise hard work.
There is a lot more to say about NVLD, and some things which scare me very much as I think about his future. Typically, NVLD children struggle with depression and suicidal thoughts as adolescents and teenagers. I pray that is not the case for Micah. There is so much unknown about the future for him, I just can’t allow myself to worry. Instead, I am claiming this promise for my child…
“For I know the plans I have for you, Micah,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”
That is all I really need to know. God has a plan for him, and He holds his future. It’s going to be okay.

 

Autism · Family

Who vs. What

When my children were very little, I used to wonder what they would become when they grew up. Whey they were still in diapers, and they could just barely sit up I wondered what their interests would be and where life would take them. Would they become a doctor or a ditch digger? It was always fun to guess.

Today, my nine year old wants to become a veterinarian. He just loves animals and science so much, so he’s planning on not missing a day of school for the rest of his life so he can achieve this goal. My seven year old wants to be a teacher – mostly because he adores his teachers and has his very own stuffed animal school.

It is difficult to tell if they will be able to achieve their dreams. I know all children dream of holding down certain jobs when they become an adult – I wanted to be an author, my sister wanted to be a pioneer! As you grow your preferences change and your dreams and goals change as well. Who knows what the future will hold?

Recently, I had a realization. God’s plan for my children is the most important thing. He has already made a way for them. He has already given them a heart for serving Him. Even in the simplest ways like clearing the tables after a church breakfast, or helping a neighbour with their yard work. It is so exciting to see God work in their lives. I can’t wait to see that develop into more as they grow.

The heart of the matter is this. What they do in life is not as important as who they become. Sure, I want to help my kids succeed in school so they can hold down a career. But the most important thing I can do as a parent is help mould their character to become godly men. Kind, caring men like their Dad.

Just this past week, we were working on a school project with Micah. Any sort of writing project is difficult because he has significant issues with both fine and gross motor skills. It was gruelling to get him to sit still and print as neatly as possible. After homework time each afternoon, I wanted to smack my head against the wall repeatedly. But you know what? It poured that week. Rained every single day. A little boy who was walking home beside us on a rainy afternoon was getting particularly soaked, so Micah shared his umbrella. They walked and chatted and finally, the little boy turned to me and said, “you know what? Your son is really nice!” It made my Mama’s heart soar.

In this life, they will face struggles. Every single day. Just sitting in a classroom full of people and desperately wanting to make friends but not knowing how to communicate well builds up barriers. Neither one of them have friends they see outside of the classroom. I am sure as they get older and they learn more, these things will change.  Because friendships are important. How we treat other people is important. How we love other people. We can do these things well when we love and have a relationship with Christ. And that’s the most important thing of all.

 

Autism · Family

Plugging In

Last year the children received tablets for their birthdays. Initially, they were given to them so they would be able to access homework apps like Raz Kids, IXL and others. However, they generally just use them now for fun and games. And that’s okay with me.
Technology can be a wonderful thing, and it can also cause many issues, including health issues. Like anything else, “everything in moderation.” I remember someone telling me they think us allowing our children to play video games is ridiculous and that their child will play outside instead of being allowed to use the computer or have a tablet. I just smiled. You see, her son is only two. She has no idea what it’s going to be like when her son is part of the public school system. Technology is the future – and the way they operate in the school system reflects that. They use computers, iPads, and homework is often done online. Even in elementary school. She’ll find out soon enough.
Don’t get me wrong. My children aren’t little zombies playing video games and games on their tablets all day long. My children go outside. They love playing outside all year round. Need some proof? Here you go.
Catching Snowflakes in the Winter

 

 

Sidewalk Chalk on the Deck in the Spring

 

 

Tons of fun to be had in the summer time!

 

 

Running around in the Fall
So we do have fun outside. More often than not, the boys will play outside for hours. When you play outside, adventure awaits. You can do anything you set your mind to. You can have concerts with a few backyard toys becoming makeshift drums and pianos. You can climb trees that you pretend are lookouts on pirate ships. You can dive into a pile of leaves, pick flowers, go for walks. Outside you can bike, play tennis, go for a swim. Being outside is a good thing, I get that. But I’d like to argue that in our lives we enjoy a good balance of both.
During the school year, we use tablet time as a reward. For an excellent day at school, they can earn up to an hour and a half on their tablets. But we do have some ground rules.
#1. Absolutely no technological devices in the bedrooms. (I have boys. Let’s be honest, it’s a good thing to be setting the rules early on. Am I right?)
#2. Clean Before Screen. (Our children have daily chores they must complete before they can have their tablet time. This includes homework).
#3. All apps and games need to be reviewed by a parents before they are installed. (I just like to know what they are doing and what they are looking at).
#4. NO SOCIAL MEDIA. (They’re only 9 and 7 – there will be lots of time for that in the future. Safety first!)
These are pretty simple, and they will be subject to change with a few more added as they get older. For now, they are working and they allow some much needed down time for the boys.
With the pressures and daily struggles that they have, it is nice to have an activity where you can just relax. We have noticed the tablet time allows for just that. And while their bodies aren’t moving much, their mind is active. Quite a few of their games require strategy, logical thinking, and most importantly for them and their motor skill issues – good hand/eye coordination. They even have learned some money management from games that require purchasing items with hard earned coins.
We often have what we call “Plugging In” time, where we all sit together in the family room with our own set of earphones and tablet, doing our own thing. The boys might play a game or read a book. My husband will listen to some music and play some games. I will usually read a book while listening to some relaxing piano music. Sometimes I will check Facebook or play a game. It’s basically just an half hour of peace where we are together, doing something separately. And that works for us. Occasionally, someone will comment on something interesting they are reading or doing and we will all check it out. But usually it’s just quiet. On a typical day, this time is scheduled in right before supper. Previously to Plugging In, this was “the witching hour” where everyone was tired, cranky and melting down. It’s a wonderful way to start winding down the day. There is a sense of togetherness, even though we’re doing our own thing.
Everything in moderation, including screen time. And a little bit of a good thing right before supper? Works for me.

 

Autism · Family

Here We Go Again


Sitting in the psychologist’s office the moment they finalize the reality that your child has an Autism diagnosis, you have a dual feeling of relief and dread. You’re relieved because you finally have answers as to why your child is the way your child is. And you dread what the future holds for them, because as you might well know, life with an autism diagnosis is so much different and more challenging than life without.
I wrote those words three years ago when we learned that Aiden had autism. They ring true again for us in a very bittersweet way, as we learned a week ago that Micah does as well. Like before, a million thoughts run through your mind.
How did I end up with two this way?  Just how bad is it? Will he ever be able to move out of the house, get married, make a life for himself? Oh my poor, sweet darling boy.
And then, you leave the appointment with the psychologist and a burden lifts from your shoulders. It’s surprising, this time. A burden you didn’t even realize was there. And it’s gone, because now you know. And sometimes, knowing is just what you need. Even though it’s hard knowing. Even though it means it will be different knowing. Even though it really means everything is still the same as it always was.
You feel relieved for a moment. And then, this. You remember this sweet face. Still the same sweet face, the same sweet love that he was an hour ago, before you knew. You remember…


All the times he made you laugh. All the times he snuggled up to you on the couch because he just loves you so incredibly much. All the times he drove you bonkers because he had to say just one more thing before he went to sleep at night. All those times he held on to your hand on the walk to school over the last few months, when all the other kids were looking, because he just didn’t want to let go yet.
After you remember you know it will all be okay. No matter what sort of diagnosis he has. No matter how many things aside from autism appear to be wrong with him. It will be okay because he is still the same. And even though you’ve been hit harder than you expected with this news, so are you. 
So you go about your day, doing what you need to do. Sometimes an autism diagnosis is like a golden ticket. All the help that you needed for your child is now available to them, because you know. So you make the phone calls. Set up the appointments. Hope and pray that it will all work out to help your child get the support they need. 
And then it’s time to go to school and pick up your child at the end of the day. You think you’re okay. You’ve told yourself everything is fine. But as you see him in the hallway, struggling with his coat and backpack, you are flooded with emotions you weren’t expecting. You start to bubble up and tears spill out. Embarrassed, you try and wipe them away so the other parents and the teachers don’t see. 
As you walk home, your ears are filled with the wonder and the excitement that he brings. And you’re back to understanding that he is just the same as he was yesterday and the day before. You’re back to understanding that knowledge is power. So you smile, thinking of all the resources your child will now have. All the help he will receive to make him the best he can be. 
That unsuspecting grin that he flashes your way with a little giggle and a side stepping dance on the way into the house brings you back home. He is home. His brother is home. Autism is just a part of life now. But then, hasn’t it always been? It’s just that now, you know.

Autism · Family

Don’t Let Comparison Steal Your JOY

I might be a little bit crazy. This past weekend was Thanksgiving here in Canada. My husband had to work and the kiddos were feeling under the weather, so we waited until yesterday to celebrate. We had a delicious “turkey” dinner (okay, it was chicken) and some pumpkin pie that I made using my Grandma’s secret recipe. And then…oh, then I let comparison set in.

You see, everyone and their dog had taken some beautiful fall family pictures and posted them up on Facebook. Some were just candid shots, others were professionally done. Every once in awhile, I look at everyone else’s photos of their beautiful, perfect smiling children and I just get a crazy old green minute where I want that too.

So, off we went to the most beautiful park in the city where we could get splendid fall photos. I had the camera, I had the leaves, I had the handsome hubby, and then…I had…my children. Perfect? Never. Smiling? Not always. Beautiful? Yes, yes, and yes.

I have been here before. I have cried frustrated tears for the perfect family photo that we will never take because one child has autism and the other likely is as well. They have a hard time even looking directly at the camera – and then when they do, they usually aren’t smiling. 

But then, I take a second glance. This isn’t someone else’s family. These people are mine. My heart and soul, my flesh and blood. I am not perfect in any way, so why should I expect them to be?

After I got over my initial feelings of regret and frustration of not getting the perfect picture, I realized I was letting comparison steal my joy. Because let me tell you, even though we’re under a lot of stress and we have more to handle than your “normal” family, we have a complete abundance of joy. 

And these little boys? These are my heart. Are they a handful? Yes. Are they exhausting? Just pass me that pillow so I can close my eyes for five minutes. I mean, really. My husband and I operate on only about five hours of good sleep a night, and he’s pushing 40. That’s just life. And do you know what? We wouldn’t trade 8 – 10 hours of undisturbed sleep for either one of these boys. Ever.

As we walked around the park, they climbed on rocks and jumped in ditches. I tried to keep from cringing as I watched them get their clothes absolutely filthy. I couldn’t help but mention once or twice they were getting their shoes soaked in the creek and that they’d have nothing to wear to school in the morning. I really held back, because that’s how boys live life. Dirty, messy, adventurous life.

See the wonder on their faces as they looked through an oversized drain in the middle of the drying up creek? You really can’t duplicate this wonder often. So you need to appreciate the joy in it when it comes. And sometimes, joy comes in messy, dirty boys looking at a drain pipe.

Micah ~ age (almost) 7

Aiden ~ age (almost) 9
We might never get that perfect family photo to blow up and hang in our living room. But we have memories and we have moments so full of joy, I am not so sure we need one.

Autism · Family

Where It All Begins

Sitting in the psychologist’s office the moment they finalize the reality that your child has an Autism diagnosis, you have a dual feeling of relief and dread. You’re relieved because you finally have answers as to why your child is the way your child is. And you dread what the future holds for them, because as you might well know, life with an autism diagnosis is so much different and more challenging than life without.
 
When it was me, sitting in the home office of our wonderful psychologist, on his particularly comfortable couch on a rainy and cold fall afternoon, I experienced both those feelings. A thousand thoughts ran through my mind as I tried to focus on what he was saying. But I couldn’t really. All I could think about was how thankful I was that throwing chairs across the room, crying in the grocery store because they were out of his favourite cereal, and being afraid of loud noises like the vacuum cleaner were instantly explained. Then, seconds later, mourning the fact that he might never be able to have the life every Mom dreams for their child – with an honest hard earned career, marriage and a family. It was a lot to take in. Then, a few hours later, realizing as you walk thorough the door of your home and see his smiling face, that it doesn’t really matter what he is diagnosed with, he will always be the same amazing person that you know and love with all your heart.
 
Sometimes autistic disorders can steal your joy. You’re constantly faced with the day to day struggles, challenges and battles that come with the territory. So many special education meetings at school, behavioural support and social training, and just every day maintenance can be overbearing. Overwhelming. Exhausting. It’s hard to see beyond these things sometimes. But when you do, you see the wonderful gift you’ve been given. Because autistic disorders can bring such joy. That’s what this story is all about. Our experiences living with a really joyful, sweet and funny boy who just so happens to have Aspergers  – beauty in the broken.