Another year of raising a son with autism

Al Librero  |  April 18, 2020  |  Blogs / Everything Else / Life  |  2 Comments

It’s Aidan’s 6th birthday. It was supposed to be part of an extended stay with my family in the UK which I had been planning for since early last year. Unfortunately, the trip had to be cancelled. Instead we are over a month into the quarantine of the Philippines, thanks to the COVID-19 pandemic. We didn’t even have a gift wrapped for him. Thank goodness, I was still able to have some food delivered. In any case, since being cooped up in the house, there hasn’t been a day where I was not concerned about how he’s able to cope. He doesn’t really understand what a quarantine is or how dangerous the coronavirus is. I break a little bit inside whenever he asks to go out or go to school. Maybe, when this is over, I can look back and write about it. For now, I have this.

I wrote and almost finished this blog back in January. But it had to shoved to the backburner as I wasn’t sure how to close it. More importantly, there were other matters that needed my attention. Today seems to be a good day to log in to my website, finish this blog, and put it out.

What prompted me to write this

A while ago, I came across this animated short story in Facebook. I’m not a fan of its melodrama and how it sugar-coats the issue of raising a child with autism. Reality is neither as simplistic nor as pretty. Levitation is so much cooler than many of the real world symptoms it’s supposed to metaphorically represent in the video. Nevertheless, the clip struck a deep, resonant chord which hit awfully close to home as a father who has struggled alongside his son.

Autism

Share it and spread the awareness. Wanting to be free. Wanting to be me. Trying to make people see. And accept the real meLike the page and share : https://www.facebook.com/Dr.ArifKhanconsultantpediatricneurologist/#autism #awareness

Posted by Dr. Arif Khan on Sunday, January 26, 2020
The melodrama touched a nerve.

Where we’re at

My son is now at an age where some parents would broadcast how awesome their kids are. They’d posting pictures in social media of their kids taking all sorts of lessons, performing on stage, and earning medals in prep school. I am years away from that. I’m at the stage where hearing Aidan speak a full coherent sentence or using the toilet on his own as cause for celebration. That is my reality as a father of an autistic child.

Aidan is not dumb. He has smart and inventive ways of going about things. And much to my own chagrin, those include subverting just about any measures I take for his safety and guidance. I love how he is never burdened with indecision. He doesn’t have a hard time figuring out his wants. Expressing it is another thing altogether, though. More importantly, he has speech and behavior issues which have proven challenging to correct. Now, with that said, I never had the problem of comparing my son to those of others. It’s the standards I had set for myself which proved difficult to let go. It took me a lot of time to understand, and more importantly, accept that hardly any of the more conventional wisdom I took to heart in preparation to raise a child does not likely apply anymore.

Last year was a big step for us. Hour-long occupational therapy sessions helped immensely in the past. But in late 2018, we felt like Aidan’s development had plateaued. We also couldn’t ensure regular contact with other kids his age anymore. We therefore had to take things a step further from therapy sessions to a full intervention program. I wasn’t entirely sure how I was going to be able to afford it. But I was eventually convinced that this was the way to go. And indeed, almost one year after, the payoff has been well worth the time, effort and money. His life skills have significantly improved.

While there are still times when I’d have no idea what’s in his head, with his improved communication skills, it’s now become easier to understand him.

What I realized

In one of the seminars my son’s school hosted, the school director brought up something interesting. She emphasized that it’s not just the children who have bad days. Parents have them, too.

I had months’ worth of bad days last year. And it took a while for me to admit that to myself.

I can list down a number of excuses. Indeed, 2019 was a year that tested me thoroughly and took its toll physically, mentally and emotionally. There were days when I had wanted to just pretend I didn’t have to worry about anything or anyone other than myself — that I didn’t have a challenged son to take care of. But in the end, there simply is no good reason to vent out frustration or anger towards my then five year old because rules I had set for him kept getting broken. While I was not abusive, I certainly made Aidan less comfortable and secure in his own home a few times. I felt horrible when his teacher caught signs of the consequences of my actions in school, looking awfully shy and insecure, especially in the face of his more advanced classmates. My son developed self-esteem issues and I was part of the problem. That was unacceptable. And I felt guilty and ashamed because of it. I had to make adjustments. I had to watch myself – my actions, the words I use and how I use them. But perhaps most importantly, I had to be conscious of the emotions that drove all of the negativity I harbored. The bottom-line is that while I won’t go so far as to say my son is never the problem, I need to reset my approach to raising him, for both our sakes.

What I needed to do

I had to earn back my son’s complete trust, or rather as much he is able to give as possible. While I worry that it might backfire later on, I’ve also allowed him to develop a stronger sense of assertiveness. On the other hand, I cannot forego discipline and firm guidance either. However, with Aidan’s erratic development, balance has been a moving target and striking it is a constant struggle. I’m learning how to be more deliberate with the tone of my voice whenever I’m speaking to him. I can never do the high pitched, almost melodic tone his mom or his teachers use, but I can be effective in my own way. His understanding of the concepts of yes and no, as well as his then new-found ability to make little decisions for himself were game changers. While we’re still far from having real conversations, even this most basic two-way communication has been of immense help and has eliminated a good chunk of the guess-work with him.

I would rather have given him something sturdier and maybe cheaper as a Christmas present. But that would’ve been about me. After making it abundantly clear that the RC Lightning McQueen (Disney’s Cars) was what he wanted as a Christmas gift, I thought it best to concede.

We also did what we can to increase the time he spent with his grandparents’, both from my side and my wife’s. Even though it can get annoying when he does so non-stop in my ears, I think it’s sweet that he would regularly ask to visit them. Perhaps we can expand this to relatives and friends in the future, particularly those closer to his age.

How I see things right now

Don’t get me wrong. We are far from done with his intervention program. And he has a LOT of bad habits which need to be corrected. He’s awfully selective with what he pays attention to. He still doesn’t know how to be careful with the things in the house. Hell, just this morning, I got mad at him for stomping on my foot for no reason. But I do believe these are solvable issues, many of which one can even attribute to being typical of little boys his age. Our approach to dealing with them simply needs to be a bit less conventional.

The casualties of rough play continue to pile up.

Someone asked me if it was true that children with autism possess special skills. I wanted to say yes. It is certainly suggested by some people, including the teachers in Aidan’s school. But the truth is that I really don’t know. Savants in the world are extremely rare. More realistic levels of giftedness are apparently more common, but autism is no guarantee for it. Aidan has tendencies and interests, but they’re nothing more than just those right now. And I do not want expect anything. I don’t want to encourage it in the face of other parents either. That said, I haven’t stopped watching for anything, at least passively. Maybe, just maybe, something manifests. But again, I wouldn’t be disappointed if it doesn’t.

We are now well into this year. With this pandemic disrupting everything, I honestly don’t know what to expect right now. I don’t know what the immediate future holds for Aidan. But no matter what, he will have his family behind him the whole way. And with any luck, he won’t have to deal with as many bad days from his dad as before.

With me and his now battered toy.

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Rory Hontomin Domingo

7 months ago

Hi King, I can feel your frusrrations. I am lost with words, but i am sure you will pass this struggle stage and see the drive will be all.smooth.

Keep the fun with Aidan 🙂

Al Librero

7 months ago

Salamat Ate Rory…


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