TRS Living Room Session #1 with David (IG handle: @doting_dad)

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The Radiant Spectrum IG Live Session Father's Day Special
TRS Session with Doting Dad - Parent of Special Needs Child

On 15 Jun 2022, we had our first ever Living Room Session via our Instagram Live to celebrate Father’s Day! We invited David (@doting_dad) to speak about how it is like to parent his child, Alexander, who has autism and ADHD. It was such a great and heartfelt session filled with authentic sharing, vulnerability and wisdom.

We gleaned so much from our conversation, and we hope to share this with more people. Below is a transcript from our conversation that night. The full video is also available for viewing on our Instagram feed here. We hope that this living room session will be insightful and meaningful to you, as it has been for us. ☺️

https://youtu.be/RS7yZkX8hiM
Bite size highlights from the session

Transcript starts here. The words highlighted in bold are spoken by Samantha. The unbolded ones are David’s.

As Father’s Day is coming, we wanted to speak with David about his life as a dad to a child with special needs. David’s son, Alexander, is also a student at our school. So, without further ado, let us invite David to be here with us.

Hi David! Thank you for doing this even though it’s so late. Would you like to introduce yourself to all our listeners today?

Hi everyone. My name is David and I’m a father to two kids. One is a teenager at 14 years old and Alexander is my youngest at 8. Alexander is the one with ASD and we have just got him diagnosed about four years back. I’m relatively new on this journey with him. That’s pretty much it. 🙂

So you shared that Alexander has ASD. He also has ADHD right? How did you feel when you first find out about his diagnosis?

Um, quite honestly, we felt very alone and, you know, naturally we felt like, why us? Why me? Initially we had trouble trying to differentiate between how much of it is really his ASD and how much of it is just a little boy. Basically, how it happened was that after a few months of going to childcare, he started to exhibit refusal in going. My wife’s the one who sends him and he would start to cry and respond very negatively whenever the grab car approaches childcare.

After we spoke to the childcare teacher, we realised that he had been punished quite often. And that’s because his behavior was not the same as other kids. You know, the teachers there were saying that he was very lively. He talks a lot, he moves around, but to us is which four-year-old not be doing that, right? I mean you’ll be concerned if he sits quietly in the corner the whole day and night. So, when we probe a bit further, then we realised that maybe there could be something of concern here, especially when we triangulated with our own observations at home.

My wife and I are very active parents, meaning that we are always looking out for opportunities to engage our kids meaningfully, so they could be swimming, cycling and so forth. So, it is through all these daily events that we started to realise that he is not really quite catching on and he’s starting to exhibit certain behaviour that seems to be different from the sister. We then started to get him diagnose. When we got the diagnosis, we were both happy and bewildered and sad. I suppose it’s a mixed pot of feelings. Happy because like anything that you are concerned about, it’s good that you get the diagnosis so that you know what to do as early as possible. Bewildered and lost because why us and why me and where should we go from here? It’s a mixed pot of feelings and therefore we started to reach out, we started to read up. We started to get connected with people.

Does your parenting style differs between Dana and Alexander after you learn about his diagnosis?

No, not quite. Because at the beginning, we try to expose both of them to pretty much the same stuff.  I’m one of those who believe that between the ages of 0 to 9, children develop a lot of core memories and skills. The things in the brain start to connect a little bit better between the ages of 0 & 9. So, as much as possible, we expose them to a lot of things. In fact, one of the things that we expose our children to is skiing. During one of the ski trips in 2018 or 2019, it was only then we realised, “Hey, Alexander is really quite different.”

Why? Because when he was put in a class with children of his same age, all of them graduated and went up the ski lift except for him. He wasn’t able to regulate his feelings, he wasn’t able to focus, and he would just stand there and cry. I mean, it’s okay if it is for a short while but when one or two groups of the children of the same age graduated and kept on going up to the lift and your son was the only one who was there, then you’re like, mmm… perhaps we should get some help, you know? So, I’m quite thankful that it is actually through all these deliberate activities that we were able to pick up some of these traits that confirm our concern.

So does Dana know about Alexander’s diagnosis?

Yes, we have chats with her. She’s helping us out in trying to establish a routine with him and trying to read to him and so on. But being a teen, she has her own set of challenges. After all she’s 14 years old and we’ve all been there. So, we try to help her along as well and not be too hard on her la. But I think that the best thing for us to do for her basically is to role model for her how her brother can be helped.

Well, what are some of the values that you instill in both Alexander and Dana?

Pretty much the same as almost every parent in all things like honesty, diligence, you know but for Alexander, more than anything else, we would love for him to be resilient and to have a greater sense of resolve. Because with this condition that he has, he must believe a lot in himself. And therefore, we find it very necessary for us to keep on affirming him and whatever little steps that he has taken. It’s a big step for him, you know. It’s kind of like landing on the moon kind of thing – one small step and one big step.  He has proven to be quite successful – he used to struggle with reading and but I’m very proud to say that although he is not an avid reader, he loves to read. He also used to be a little weaker in his math, but he is catching on quite well. So, all these are small, small little steps with great effort.

I am very curious in the relationship like between Dana and Alexander.
How is the sibling relationship like between Dana and Alexander?

We only have two so from what we have observed with some of our other friends and it’s pretty much the same. Most of the time they love each other and sometimes they like to kill each other. And then a hug can become a squeeze and a cuddle can become a tickle which is good I suppose. I mean these are normal brother-sister kind of dynamics. But we are also monitoring a little bit because after all, there is a big age gap between 8 and 14. So sometimes you have to tell the sister that, you know go easy on this stuff.

Was there a big difference the way you raise Dana vs Alexander?

Yes there is. We raised Dana up to be very, very independent. I always like to say that she is not your typical pink pony-tale princess kind of girl. She loves competitive sports. She is very outdoor-ish and you can pretty much leave her to do her own things. But with Alexander, knowing his condition, we find that we need to guide him a little bit more. You know, nudge him here and there and when he gains the confidence to be able to do things, then we will have to let go. So, there is more closer prodding and nudging for Alexander. Yeah, but I think if you ask most parents, they will say that special needs or not, there’s no one child that is the same.

What are some of the struggles you faced? I assume letting go is quite tough too?

Yeah, especially when he went to Primary School P1. It was, it was quite tough for us to let him go because we know we’re just afraid that the other kids will not treat him as well and be mean to him. Kids are mean la, they can be very playful and so on and so forth. Therefore, we were happy that we got him diagnosed early. When he got registered in a primary school, we actually went to the school with his report. We sat down with the AED and the teachers and told them straight in the face that he has this condition and this is the recommendation. We also told them that we will be in touch quite often to find out a little bit more about how he is coping. So, I think the diagnosis is very important whether to confirm the condition or not because at the end of the day it gives you direction. So, that was particularly tough – to let him go But so far I think he has thrived. He has got some good friends. Of course, there will be the conflict here and there. I mean, who doesn’t have that? I think it’s just a normal dynamics of classroom life, otherwise it’s fine.

So, Father’s Day is coming up and I am curious. Do fathers have it easier?

No, I think we both play different roles. I think dads are usually seen as the outdoor-ish sort and the one with the broader picture, but that’s generalising here. But one thing for sure, husbands and wives, Moms, and Dads, we all play complementary roles in raising our kids. Sometimes, we do switch roles depending on the situation so no la, I don’t think that dads get it easier in the sense. it’s just different.

Have you ever wished that Alexander was normal?

When we first got his diagnosis, of course, initially you feel that, like I mentioned – Why? Why us, why me, and where did we go wrong? These kinds of feelings come out. It’s quite akin a grief cycle. Except that, while you grieve, normally, you grieve for someone who has passed away and you grieve with the memory of the person. But when you realise that your child has special needs, it’s a different kind of grieving. It’s a grieving for a future that you perhaps could have had with the child. But after you have gone through that grieving with a close network of friends, with close partnership with your spouse, for us, we snapped out of it and the parental part came in to just tell us that look, this is our child and we should do something.

So, to think that if we wish that he could be normal, to be honest, no. Because to think this way is almost like taking a Persian rug and turn it to the back and rearranging the tapestry behind. There is no point to do that. I mean the picture is perfect as it is. We work with what we have.

How did you manage/ get over your grief? I do meet parents that till this day, they will still chat with me and we talk about it. I mean it’s an ongoing thing right, you cannot just snap out of it. How did you manage it and push through?

I think staying connected with a network of friends who have special needs children and reading up really, really helps. I mean you have to do things actively on your part and you cannot wallow in sympathy and then in any kind of adversity, you cannot come out of it. So, we have to do something active to really come out of it AND knowing that if we don’t do something, then we are actually not helping our child. I mean, how can you do that as a parent, right? So, it is a constant journey and effort to go one step ahead of him. And it’s never ending to some extent because he is also developing as a normal human being. So, as he grows up, he becomes stronger. He is more opinionated. He likes his things here. He likes his things there. Then you also must progress with him. I guess that’s parenting. Isn’t it?

Did you ever catch yourself comparing him to his neurotypical friends or even his own sister?

I think that’s difficult to avoid. I mean, it’s just human nature to do that, but you know what? I always tell myself that ordinary kids have ordinary parents, extraordinary kids need extraordinary parents. You know, we are all called for a special purpose. And if my calling has to be to raise Alexander up, then, who am I to shrug away from my own calling.

How do you and your wife split up the parenting work?

In a general sense, my wife, I call her the Minister of Home Affairs. Home as in like the home because she manages the home. I think most wives have a greater sense of detail in things, and of course, the kitchen and the cleanliness of the home and all that. It is her domain la, setting schedules for Alexander. So, for me, it is to follow on to the schedule. And being more of an active outdoor guy, I try to engage him. Or rather I try to engage both my kids in sports and activities. It need not be a very big bang kind of activity. It can be as simple as washing car. I’ve always washed my own car and we will just bring the kids down and just do it. It is actually through these activities that give us opportunities, especially with Alexander, to affirm and to praise him. Otherwise, as working parents, it is quite tough. I mean, I leave for work at 6:30am and I come home by 6pm.  So, the time that we have with them is limited. So, on weekends, I try to create these kinds of opportunities to be with them and to really affirm them.

Oh wow. I learn as much from parents as I do for the kids. To wrap up, what would you like to share with the community or what do you want them to understand about children with special needs?

My wife and I, we feel that we are really standing on the shoulders of giants here. We just came back from a trip to New Zealand and we went there with a couple friend who has an autistic adult daughter. She’s non-verbal. So everywhere they go, they need to feed her. They need to look into her toilet needs. And she’s an adult daughter. When my wife and I look at how the parents love her and bring her on this self-drive trip, we are really quite moved.

When we were there, we did this thing called the luge. You know, you go down the slope on this little thing. We have that in Sentosa as well. And the parents were okay with the adult daughter taking the luge, and then we would wonder how is she going to drive this thing? Because she’s non-verbal and she struggles even to feed herself. But the people at the luge was so, so, kind. They said no problem, one of us will guide her down even without blinking their eye. I was like, wow, how is that going to happen? And so, we all went down the luge and then the daughter and one of the staff eventually came down in tandem. What moves us nearly to tears was that the staff was actually struggling to bring her down, to be honest, but she was always smiling. She was so happy and she was cheerful, she was nudging her along. To us, it doesn’t seem like she’s doing it as a duty as a chore. Her face was radiating with joy and kindness. I’m not too sure if I have ever seen that in Singapore, to be honest.

And this is why I’m happy to be part of this. It is to is to be the game changer here. It is to help our society to really embrace inclusivity. What is ordinary and what is not? Look, I mean about 100 or 150 or 200 years ago, if my eyesight’s start to fail and I don’t have the luxury of having glasses, I would be a special needs person because I can’t see things clearly. But someone invented the glasses and I can wear it now. I can see things clearly and it has been accepted as normal for people to wear glasses. So, I look forward to the day when special needs people are embraced as truly as just one of society and that all of us will be able to see them and approach them and help each other with a smile on your face.

Wow. Thank you so much for your sharing! It is so lovely. This conversation has been a gamechanger even for me!

One last point Samantha. I want to touch on TRS because one of the activities that actually caused us to be concerned about Alexander was that at age four, just like his sister, we started him on piano lessons. I’m an active musician myself, but when the piano teacher came, he was struggling, she was struggling. I felt a great sense of loss when I had to stop the piano lesson because it was obviously not going anywhere. You know, his right hand and left hand are like all over the shop. And you know, there is this great sense of loss. Because to me, I think the Arts, whether it is art or music, it is an important part of a person’s life because they are able to express beyond just words. So, for us to chance across TRS and to see the things that you and your team do, I think is tremendous. It’s really very motivating to know that beyond ABRSM, grades and all that whatnot, it is just about empowering, and giving every kid special, or not, the gift of Music, the gift of expression. And I just want to say, kudos to your team, for the fine work that you all do.

Really, really, thank you so much. Thank you. I am very thankful for you. I think fathers, they play a big role. Every week, I see you bring Alexander, we see it. Even if you just silently bring him, we see all the effort that you put in. I want to thank you for your time today. I agree with everything you said today. The next steps for the community would be to embrace inclusivity. Make it normal, right? It is normal. It is acceptable and what you said about extraordinary kids needing extraordinary parents – I think you’re an extraordinary dad. Thank you again for your time. Wishing you an early Happy Father’s Day!

Thank you to everyone who is here today. I think I have quite a lot of fun. Thank you, David!

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