My Son, Autism, And Me

So last week for me was…

Tough.

I really do mean and intend to try post more often, or at least keep it regular enough, but this week had its fair share of challenges. I’m more doing this post so I can hopefully exorcise some mental demons. Essentially, I’m looking to defragment the auld noggin and then finally finish my piece on experiences suffering from anxiety.

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Here’s an inside view on my mind right now. I’m not sure what represents what, but that’s ok. Just know that I’m feeling it.

My son’s birthday is tomorrow! He is going to be a whopping 7 years old. Whenever a birthday of his comes around, I am prone to reminisce, as I’m sure any parent does. You remember the first time you held em, how they smelt, just how fucking outofyourmindscared you were. And you think on previous birthdays, how those went, what they were like then.

And who they are now.

As I mentioned before, I feel this rising panic attack if I don’t write. Writing in this instance does not have to mean blogging or tweeting. It just needs to feel I’m working towards… Something? But things keep getting in my way this week, things keep making me feel guilty. Because doing this (yes, THIS) actually makes me happy. Since I started this madcap place, I can see the difference between me who is regularly writing and the me who is not. If I hit 3 days without producing (anyone else think that word sounds arrogant?) something now, it hits me like a bullet to the chest.

N.B I’ve never been shot, shot at and have rarely ever even seen a firearm. Please stick around…

Last Tuesday, which would be the 19/02/19, I received some news on my son that fucked me up for a few days. I started typing, trying to sum up my thoughts, but I kept leaving this off, coming back to it and then thinking that I shouldn’t share it. But fuck it, that’s the point of this place. To share my nonsense brain in the hope that it helps others and at the very least, provides a distraction. Let’s get to it. As usual, here’s a track you might enjoy.

So, what happened.

My son was on holidays last week and he got invited to a party at a play centre. One of the ones with the ball pits, the hanging punching bags and the slides that felt massive when you were a kid. I mean, to be fair, they are still pretty big even now, they just felt like something to conquer as a wee lad. This was the first time he had been invited to something that wasn’t connected to the child of a friend or family, so this was a big fucking deal. I lack the verbiage to properly get across to you just what this meant for us, but if you’re a parent, I’m sure you know. In any case, we were so proud that he had actual, proper school friends.

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I really need to figure out how to cry handsomely.

Once there, the parents all began talking. As they did so, we learned our son wasn’t being given reading homework, whereas others were. Here’s a thing I haven’t mentioned before, but my son has Autism.

I mean, you’ll know this already if you read the title. Oh, unless you thought it was about me having it? Titles can be funny that way.

He was pretty much given the label on his 3rd birthday. Tomorrow, on the 1st of March, he’ll be 7. So, things have changed a bit in that time…

Let’s see how.

The cynic in me believes that it’s hard to talk about this without sounding like I want a pity parade. That I’m mentioning this for your sympathy. Really, it’s neither of those things, but this stuff is tied to the deep roots of my fears as a parent. It’s what almost every other fear or wave of concern stems from.

So, lets head in.

Let’s start with The Signs.

The “Signs”

Might be ignorant to throw the auld bunny ears up in the heading but I’m trying to conjure up my feelings from the time. That there was nothing wrong here.

That things were perfect.

This child is my treasure, he is the centre of my being. I’m sure I’m blowing your mind with these revelations, but this is critical information people! I was the first one to make him laugh, and it’s still the sweetest sound I ever heard. No matter what I’m going through, hearing his giddy laughter is all I need for course correction.

He saves me from myself every day.

I was the one who got him walking. Hold his hands, let go, watch him waddle for a second and hopefully ya catch him before he has too rough a tumble. This part, my partner was not so good at. We are blessed to have a small but friendly public park just 2 minutes away from where we live. I’d often bring him there and slowly but surely, he went from tumbling around to running away while cackling madly. Boom! I would probably think to myself, as I felt like the best dad around. As I mentioned elsewhere, my birth-father didn’t want me, so I do everything I can to ensure my son never feels the same. So if ya wanna be twisted about it, I owe some of my parenting skills to him?

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Also, having a bad dad is the go-to origin for a fair amount of super-villains. TALK ABOUT PRESSURE!

At the time, my partner worked in a creche. She would do so roughly up until he turned 2 and a half, maybe till he was 3. As such, she knew WAY MORE than me. Which would prove itself an unfathomable advantage for us. She deals with a large selection of kids so she had the first-hand experience with pretty much any scenario or ailment that would worry me. I certainly brought my collection of Batman The Animated Series some stuff to the table but there’s no question about it, she was a fucking BOSS in how she handled this! When these thoughts enter my head, I always like to remind her just how on point she was with everything, but she just shrugs. So I’ll repeat it here for yourselves.

She was a total fucking BOSS!

Not a bad parent too, if ya know what I mean. Hyuk Hyuk Hyuk! Thatwascompletelyawful… Please, please stick around.

Thanks to her, we had a better idea of targets. Like at so many months, you’d hope to hear a word or two, by X many, walking etc. Not that it’s a competition, but you want to know what the target margins are, so you can do your part in the developmental years. So yeah…

Walking? DONE!

Building Blocks and imaginative play? DONE!

Words? IN PROGRESS

Ripping hair out each night? Better believe you can tick-waitwhatthefuck

He began to rip his hair out.

And it would not stop.

He’s had eczema since birth, and the poor fella was hit with a full body dose of the cunting thing. Again, my partner aced this bit. What could have been months of pain for him and us was a few weeks at worst as she figured out what creams worked and what didn’t fierce fast! The doctors had recommended something, can’t remember for the life of me what, and it provided brief relief.

It went on this way for a time.

New cream, all ok. 5 days later, his skin would itch. So new cream, all ok, 5 days later, his skin would itch… They wanted him to bathe daily and that seemed to exacerbate things. So, we changed it to every other day (bar toilet accidents) with a new cream and all was good. It took awhile, but things got better for sure.

However, the dry scalp stuck around. And this would aid him tremendously in yanking his head whiskers out. He was really going for it too, fixated one might say. If we saw him doing it, we’d do what we could to stop him, from distracting with toys to just saying his name at various pitches.

“Scotttttttt…”

Scott.”

Scotty!”

And that worked ok.

But once he was in bed, his head was fair game and we couldn’t seem to stop him. I’d sit with him till he went to sleep and once I was sure he was conked, I’d get up. But the next morning, his crown would be just a tad barer than it was the night before.

And that wasn’t even the worst part.

Once he started scalping himself,

He became non-verbal.

And what a time for all this to happen as now he was going for his assessments, to see how he was progressing. I can’t really imagine how this must have looked to outsiders. Before this, he was, by any definition, a chatty catty. A child who seemed to have no mute button. A child who was always asking questions and if there was no question to ask, he had some of his 2-year-old wisdom to share.

He would always wave or say hi to people as we passed in the park. This was something I tried hard to push, as by now I had recognised I was becoming insular, so I made it my business to talk at the park, the theory being that if he saw me talking to strangers, it would encourage some extrovert tendencies in himself.

But no, once this started, he quickly turned into someone who would freeze up around company. He got very picky with who had the privilege to listen to his words. The grannies were good, but he would not talk with either grandfather present. Same with certain aunts. He would talk to us, but once we were outside, he went mute. Even say, if we were at a place he always frequented and we were the only people around, still nothing.

Suddenly, talking had rules.

We’d tell the child advisors about progress at home. That he is slowly learning his ABCs, that he’ll say a new word all the time. That he can tell “this” apart from “that”. How he was stringing together small sentences, all that good stuff.

But that’s not what they saw.

And it was all to do with us.

We were fighting. Daily, nightly and ever so rightly. And though there was nothing physical per see, it was brutal.

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Whatever the verbal version of chucking a couch is, believe you me, we did it.

We were tired, stretched thin from work as well as parenting. I mean, who isn’t, but we did not deal with this stuff in any way in the stratosphere of healthy. We were both keen to bottle things up and keep the pressure under the surface. She asks me am I ok, I confirm that I am, and vice versa. Not only that, but we seemed to have both placed a silent burden on ourselves to be the ultimate parents. He was roughly 30 months old, and we had never let the grandparents take him away for a night. We’d get a dinner alone together, but the conversation would just be about him. Just stressing, and quietly accusing the other.

You remembered to pack his food, right? Maybe I should ring.

What if he won’t eat for them. You know he won’t eat unless you turn on that video.

Instead of going to the movies after this, maybe we should just go get him?

We never stopped being parents. Now, don’t get me wrong, once you have a kid, it’s obvious what your priorities are and should be. But, we became zealous if not fervent about our parenting duties. So much so, that we stopped looking after ourselves.

And in turn, each other.

Like I briefly covered here, things quickly got to such a place that you had to earn leaving the house. That you couldn’t leave the other at home as the single parent for the night unless you had a damn good reason.

Your going out, again? Didn’t you leave the house two months ago?

Oh your going for a walk? For what, space? Well I’m coming with you.

The child is up sick, so we should BOTH BE UP!

If any of this sounds familiar, then I can only hope it’s because we’re neighbours. We were cruel to each other, but we did our best not to scream. And we somehow thought that by not screaming, our son wouldn’t know. That he couldn’t tell. So embroiled in this tension and anger, we were unable to see what an effect it was having.

We were too clouded to see the poison he was growing up in.

Our son was in a house of hate, and his parents were incapable of looking at each other without seething rage until the day we got the diagnosis.

The Diagnosis

So, thanks to us, he had gone inward. No talking, great difficulty engaging with new people and the hair ripping made it look like he survived a fire. I often wonder how we looked. Himself looking like he’s just left a burnt unit and us, having had nothing but love for him, and anything but for each other.

When they sat us down to give us their findings, we weren’t surprised. There had been 3 assessments in the space of maybe a 4-6 weeks. I could see what was happening. I remember when they told us, we just said that we knew.

Which surprised them.

People usually get emotional when they hear the news.

I still remember that so clearly. It felt like an accusation. That by not crying, by not breaking down in front of these strangers was some kind of proof of our parenting skills.

How could anyone look at that child and not love him?

Who Assesses the Assessors?

So we sober up to what’s in front of us, but we don’t agree with the assessment. I’m struggling to remember at this time what way they graded Autism then. As in was it tiers, or numbers or perhaps using some kind of star wars reference system.

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We can either choose to dwell on our pain, our laugh. Or be like the prequel memes and choose both!

Whatever it was, it was bad. Like “5 minutes to midnight” bad. We said we heard their opinions but that we disagreed. I think we both understood that they’re basing on what they can see, and it’s not like we were gonna say;

Oh no, you don’t get it, behind closed doors, we’re fucking killing each other! It’s just some good ole fashioned familial trauma!

So, we listened to what they told us he couldn’t do.

What he would never be able to do.

Don’t waste your time potty training him. It’ll only cause undue stress on the household.

He’ll have learning difficulties, he will need to be in a ward.

Unlikely that he won’t need supervision at all times as he gets older.

Imagine hearing those words, about a child not yet turned 3, and his future has been decided for him already. Does that seem fair to you? Or right?

We thanked em for their time and they said we’d be back for another assessment in 2-3 months. That meeting sobered us up rightly. What was going on between us had clearly made a terrible impact. We cried until our bodies felt empty. The fear, the guilt, the anger, we cleansed ourselves of all of it.*

Worse, once we left the building, literally as the doors close behind us so there is just the 3 of us in earshot, my son says “That was really silly”. This fucking kid…

So, with 3 months to try set things aside and help show that they are wrong about him…

We bring our A game.

We arrange speech therapy lessons twice a week, but before that, we look at the potty thing. Since my partner worked in a creche, she had helped wean a whole menagerie of kids off of diapers. We thought this would take weeks of pain involving leg rashes and sleepless nights when in fact, he was off them after two nights. That’s all it took. He wet his bed twice and then it didn’t happen again. Just earlier that week we had been told to expect practically a lifetime of diapers and within 72 hours of hearing that, it was proved false. This was a huge motivator for us. Just what else were they wrong about?

The speech therapy needed longer to show results but it absolutely yielded them. The preliminary sessions (maybe the first 3 or 4) were wild in terms of progress. Sometimes, he’d talk, sometimes he wouldn’t. After a few sessions for our son to gel with the teacher, she sussed what would coax him out of his shell and he’d be far more obliging with her than with many others. To hear him talk and even shout at someone else was manna from Heaven.

She was the first to soothe our fears, and with such simple words too. She told us that though she couldn’t deny he did have his own challenges, she’d be surprised to see that he gets the same diagnosis on a reassessment. To hear that from someone outside the situation, was no small thing. Because as a parent, I’ve seen enough other parents whose kids do need help in one area or another, yet they ignore it. Maybe out of fear or some supposed shame, but they either don’t see it…

Or don’t want to.

So we go back for the re-assessment and we’re practically a new family. We’re now driven, and with drive, comes purpose. I’m not going to pretend we magically stop quarrelling but we set aside our egos and focus on him.

The hair ripping stops, and he grows himself a fine little patch too!

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In another post, I mentioned having a gorgeous child. TRY TO TELL ME I’M WRONG!

The Final Assessment

So we felt things were going to go different now. I mean, they kinda HAD to be.

Toilet time? No diapers, uses the loo. Even attempted butt wiping of own initiative

Socialising? Now way up, no longer wary of certain relatives. Happy to chat to anyone

Vocab is improving daily. Sentences are simple but have better structure.

So, pretty much everything that caused him to have the diagnosis was no longer true, they had been retconned, expunged and deemed non-canon! Hell, he was even chatting away to them once inside!

A month before this, we had received a written report of what they had analysed. This was a tough read. Because you’re looking at your child on a page from a stranger, with none of their character or charming idiosyncrasies that you see daily. Just them, what they can do, and what they can’t.

It makes you think is this how others see them?

That this is the sum of his parts.

So, having just turned 3, we wait to for the verdict. They can see the improvements and acknowledge that he’s practically a different child to who they’d seen before, but he fails a few of their verbal tests. Things like Point here, but don’t point there.

So, they change the report!

It is no longer deemed severe. It is no longer 5 minutes to midnight.

For the first time in months, I no longer feel like I’m holding my breath.

But,

They are not quick to dismiss that he has been misdiagnosed. They still feel there are enough traits exhibited, that it would be dangerous to pretend otherwise. This…

This was a kick in the teeth.

Don’t get me wrong, this was still a massive victory for us and for him, but it was impossible not to feel to be defeated after having broken so many “impassable” barriers on the road to this moment.

So they label him as “Moderate”.

To me, this sounded low. As in I would presume anyone quirky or peculiar could have a chance of having a similar label. So I was relieved. Still upset, as you never want to think of your child being born and immediately dealt a bad hand, but still, I was relieved. After we left, my partner explained that moderate could really vary, but it still meant he was going to face setbacks. That they felt he has learning difficulties.

Once the coming summer passes, he’ll be in playschool. After hearing that, this lit a fire under our arses once more. He is owed the same chances and opportunities as anyone else, but if that means going the extra mile or ten, then that’s what we’ll do. So we look into getting him a home tutor.

It seems like it would be critical for the next part that I tell you this, but we are not well to do money wise, and back then, things were tight. You know in porn, when the fella says “Augh, you’re so fucking tight!” ? Yeah, he’s talking about finances like ours… Just two people in their mid-20s working minimum wage jobs, neither of us working 40 hours because after the recession, who had 40 hours to give!? Back then, I wouldn’t describe it as living from paycheck to paycheck so much so as surviving from paycheck to paycheck.

Now, this home tutor was a miracle worker. She clicks with him immediately. Figures out the best approach to getting him to learn and keep the information in his head. Again, we see his confidence levels rise across the board. Again, we see those impassable barriers broken. This kid is a fucking superstar!

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Here’s a more recent picture of him. His mam needs glasses for watching TV and other things, so wears his lens-less glasses when watching TV with her.

During his time in playschool, there would be moments where he’d bottle up again. I think what happened was another child laughed or made fun of how he pronounced a word. Oh man, this hit him hard. We were terrified it was going to undo all his progress. It certainly hindered things, but like I said, he’s a rockstar. So we kept at it.

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And I also make note of the child’s name and address, y’know, for reasons…

There was some concern about him entering school after a year of playschool, so we made the decision to keep him there a second year, as well as keep on to the tutor. She actually did really well for herself so opened up a practice of sorts, which sadly was quite a drive away, so sadly before starting primary school, we had to lose her. In that time, I became the primary minder.

And what a rewarding two years those were.

From September 2016-2018, I was his primary carer. Doing the homework, reading books, trying to help with the words where I can. Sadly, I have yet to learn to drive so my partner had to still do some things while trying to get through college. But we got there for him.

In November 2018, we had a meeting with the special needs assistant in the school. She wanted to discuss his learning parameters. Where a kid in his year should be, and how he was comparing.

Sorry, just to say, he didn’t end up in a ward. He’s in class, the same as anyone. The first year, the shyness kicked back into high gear but we slowly managed to coax it out of him.

In terms of reading, maths and language, he is on par.

In terms of imagination and building, he is above the standard.

On par…

I ask you, reader, are there two more beautiful words in the English language?

On, par.

In any language?

On the outside, we smiled, shook her hand and thanked her for her time. But on the inside.

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HE’S ON FUCKING PAR! Sidenote: we are not exactly high energy people.

Before I head into my epilogue, I just want to go back up to the start. To the thing that got me re-living all this in my head. That he wasn’t getting reading homework. This was especially confusing and scary for us, having been told a measly 3 months ago that he was at the appropriate reading level.

So why had he not gotten the homework?

Was he being held back?

Were we being lied to?

With the school on a break, we had no teacher to turn to, so my paranoia went into over-drive. Happily, it turns out, they have some kids focusing on one area for this semester, while the other half of the class do another thing. Sounds fucking odd, but they assured us he’d be having the reading homework soon and that would be replacing his maths when it happens.

So yeah, my head was fucked up for pretty much the whole week.

For nout.

And at the end of the day, isn’t that really what being a parent is about?

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Here’s him from an earlier time, before I’m truly aware of how much he is going to mess with my head.

Epilogue

There are still times where I look at him and my stomach knots up with guilt. He is my light. He is my life. He is my whole world and with everything in me, I just want that child to be happy. The last few years have been a tremendous blessing, but the fear is still there when it comes to him. That suddenly, there will be a setback. That one of those impassable walls will truly become impassable, and what happens after that?

What happens to him when we’re gone?

Now, I feel that if he does have autism, it’s mild or at least, focused on a particular area. He is rigid with food textures and about routine. Eg he would generally have crackers at some point after dinner and tends to be inflexible about having them after dinner. To me, that seems like some version of OCD, right? Routine, routine, routine.

These days, when it comes to talking, it’s very focused on his wants. But, that’s what kids do right? That’s just a child, being a child.

This is the stuff that fucks you up.

Because I’ve seen enough parents whose kids do need help in one area or another, yet they ignore it. Maybe out of fear or some supposed shame, but they don’t see it. With others, it can seem like they refuse to see it. I like to think I’m good at being objective but in so many ways, I don’t see it in him. So I fear I’m seeing what I want and I’m ignoring the rest. And if I ask someone else, can I really trust their opinion? Because at the end of the day, if I ask family or a friend, they will (with the best of intentions) tell me what I want to hear.

More Epilogue

There can’t be really a true ending here, what with us being still alive and all.

So I’ll try to wind down with this,

The rational part of me says that this was always going to be this way. These things, these are things you’re born with. You can’t change them no more than you can move the Sun. When he was born, we found out there had been no water in the womb for a number of days. Not being a medical man, I have no idea how much that could affect anything, but I tend to put it down to some event like that. Something completely out of our control.

Most of the time, I believe that and accept it.

But there are other moments…

There are, other days…

Where I think that there are things that so pure, so emotional, that they must have had a neurological impact on him. That the trauma of witnessing his parents be so purposely vile to each other changed him so profoundly, that it would be ignorant, if not flagrantly narcissistic to pretend we are innocent parties. That my son, my treasure, my whole reason for being, is a victim.

A victim of me.

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Having little intellectual intelligence, I genuinely thought this was a line from The Wicked + The Divine.

P.S

Thanks for reading. I hope that was… Something? It did me good anyways.

Talk soon

*Well, not the guilt. That stuff is tattooed to every inch, with (hopefully) invisible ink.

3 thoughts on “My Son, Autism, And Me

  1. Thank you for your post. I was a behavioral therapist for children with autism once upon a time so can empathize with your family. I can also relate to you and your generational “fuckedupness”. I get that as my mom fucked me up and now I feel I’m fucking my daughter up. She’s 12 now and her mis-behaviors are through the roof. My once sweet child is now like a bipolar devil. Manipulative, cunning. I hate to say that about my own child but it’s true. But I see how me, my mother, my mother’s mother all had an impact. It’s generational. All impacting down the line. Thank you for identifying this and touching on it on this piece. It’s important we remember that.

    Liked by 1 person

    1. So sorry for the delay, I had replied to this one my phone but I guess it bugged out or something.

      I think as we become more open about mental health, thoughts and feelings like ours will become more commonplace. That it is ok to have these negative thoughts. Better yet, it’s important that we share. Bar some nefarious exceptions, we all love our kids, but that doesn’t mean everything we do is good for them, even with the best of intentions. It is a relationship at the end of the day, and relationships always leave a mark.

      Thanks for sharing

      Like

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