Accepting the Journey…

For a little while now, the operator of Autism Journey has asked me to write a blog for the site — a father’s perspective. I started a few times, but it never seemed right and didn’t finish.

I’m glad I waited until now, because I’ve learned the most important thing: DO NOT underestimate your child.

Our son is approaching his sixth birthday.  He was diagnosed at age two.  If you are the parent of an ASD child, you felt the same thing we did. There was pain, there was fear, there was uncertainty.  Lots of all three.

We live in a Canadian province that is cruel to autism families, although it is possible things are (finally) changing.  Our national government doesn’t care, either.  We have received very limited financial support.  But we are fortunate…we make a good living, which allowed my wife to focus solely on our son.  It also allowed us to pay for private care.

You learn very quickly about your marriage.  It will crumble under the stress or strengthen with the bond.  Thankfully, ours did the latter.

We make a very good team.  There are different pressures on each of us.  It has not been easy for my wife to give up her career.  I know she misses it.  But, she has saved our boy’s life.  I’m serious about that…she threw herself into the abyss, learning everything she could about ASD so we could make the most informed decisions possible.

Many of the choices we made turned out to be the right ones.  That’s not to say we didn’t make mistakes, or waste money on things that didn’t work, but the majority did.  That’s because she did the research and presented all of the options.  We have never been unprepared.  That’s very important.

There are two things I do in return that I see as critical.  First, I try to give her the final decision on anything to do with our boy.  I will listen, I will ask questions, I will give my opinion.  But unless I strongly disagree with her path, I will say, “You’re the one around him all the time, you know him best.”  Her call is usually the right one.

Second, I make a point of telling her what a great job she is doing with our son.  Sometimes, I’ll joke about it, saying, “Have I told you lately what a great job you do with him?”  She’ll just roll her eyes and laugh.  But, it’s important.  She does do a fantastic job and we are seeing growth.

Our little guy deserves a lot of credit, because he is competitive and embraces challenge.  But, he needs to be put on the right path and my wife does that.  You have to make sure she knows.

In fact, if we disagree on anything it’s how she should treat herself.  She doesn’t like to spend money on herself, because she doesn’t feel she earns it.  Of course, that’s ridiculous.  She earns it by “doing God’s work with our son” I tell her.  But she resists, which I don’t like.  So, I’ll get her a gift card or something.  She has to know you appreciate the effort she is making, which, in her case, is exceptional.

You will feel pressures, too. I do.  Since the finances — and therefore, our son’s private therapy — depend on me, I feel extreme pressure to excel at my work.  For the most part, I am successful, but there are mistakes, and painful ones, in every job.  Those are soul-crushing, because you sit there and think, “How bad is this?  Oh my God, is my son’s care going to be lost?”  The worst-case scenario goes through your mind.  I was going through something like this once, and someone gave me awesome advice.  He listened, and agreed I’d been dealt a bad hand.  Then he paused and said, “Fucking suck it up.  Your wife and son are depending on you!  You need to get going.”

It was a great slap in the face.  It was the message i needed. I’m pretty confident in my ability, but I think everyone has doubts once in a while. That’s the message I remember.  You are the last line, and you need to be honest about that.

But it is a lot of pressure and you have to internalize it.  It is rare I show any kind of negativity around my wife.  I’m mostly optimistic, so when I do get negative it affects her.  You have to make sure that, if you are feeling down, you keep it away from everyone else.

I will concede that I found it very hard to be around my other nieces and nephews for awhile.  I was jealous.  It’s a problem, since I have almost 15 of them.  But this last year was really good for our son.

We were very worried he would not find a school for Grade 1.  Our local public school is very highly regarded…as long as there is nothing wrong with you.  It became painfully obvious they did not want our son there, and there is zero point in putting him somewhere he is set up to fail.  It was huge stress for us.

But he got into two of them, and we chose the one with the better reputation.  We REALLY wanted him to get in to that school.  I’ll never forget that day. The principal asked to spend an hour with our son alone in her office. It was a test. We were so nervous, which is hilarious in hindsight, because he didn’t understand the seriousness of the meeting.

After it was over, the principal walked up to us and said, “There is no doubt in my mind he can handle the academics.”  I always knew he was smart, but in that moment, I realized I didn’t understand how smart. (I also realized that, like most kids, he listens to everyone else more than he listens to his parents.)

I was so proud of him…and it really forced me to see him in a different light.  You start noticing things.  For one, he is an excellent traveler. We’ve taken some long trips — flights, drives, trains — and he loves it.  That is such a huge relief; we can still see some great sites without a problem.  It adds to our lives because it is such a stress-reducer.

At the beginning of this past summer, we signed him up to learn how to ride a bicycle. In three months, he is riding a regular two-wheeler by himself.  He loses focus sometimes and we have to do it in controlled environments (parking lots), but he can do it.  He’s fast, he turns, he falls and gets back up.

Every time I see it, I don’t know whether to cheer or cry.  But it’s awesome.  His uncle saw him once and said, “He can ride a bike?”

All of us are guilty of assuming he can’t do most things.  He can do a ton.

I treat him differently now.  I’ll give him a few extra seconds to answer a question or complete a task…because I recognize he can, he just might need that time.  And I challenge him.  I don’t let him give up as easy on tasks, or I ask him to do something he might not have done before.  You have to know when enough is enough, but he generally accomplishes what you ask.

He loves the encouragement when he does it.  He gets very excited when we cheer or clap.  That’s a powerful motivator.

Two other things: Don’t be fooled by “miracle cures” or snake-oil salesmen.  Accept that this what your child is, and no cure currently exists. False hope makes it worse.  Don’t be fooled because it will crush you financially and emotionally.

Also: I used to think that parents who looked at their two year-olds and judged them were nuts.  But, you have to act on ASD at that age.  If you wait, you can lose your child.  Our paediatrician, who is generally very good, told us to relax and not overreact when he fell behind.  My wife pushed back.  She was right and she saved our child.  If you are not sure, push — hard.  Better to apologize later than realize a delay made things worse.

You realize that everyone has their BS.  No family escapes through life unscathed.  But, if you choose to emphasize the positives and power through the negatives, you can find hope.  No one knows what life will be like in five, 10, 20 or 50 years.  Accept the journey.  See where it goes. Don’t be afraid to test your son or daughter.  Nudge them to be a little better, do something you thought they couldn’t.

It’s the only way to live.  I’m excited to see where our little guy takes us.

Author: JustADad

JustADad is a husband and father to a young son on the autism spectrum. When he isn’t advocating for his son, he enjoys watching hockey, playing online trivia and reading the latest graphic novel. He resides in the Greater Toronto Area with his wife and son.