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.”

 

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