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  • Writer's pictureGracia Maureen Setyabudhi

Bad Things At Bad Timings

Diary of A Special Needs Mom

Jakarta, 15 November 2022

Imagine that you are about to go on your first International holiday in almost 3 years, thanks to the pandemic, in a week's time. Feeling all excited, everything has been prepared, all you need to do is just pack your bags and go. But bam!!!! Something bad happened!! Got the picture? Talking about bad things at worse on!

Surprise Trip - Business Class

I have been pretty excited about my coming up trip. This is an unplanned trip actually, an impulsive decision just because Singapore Airlines was having a good deal price on their miles redemption, and I happen to have miles to burn which are expiring soon. Limited destinations, and the travel period is only until this November'22. There's one destination that has a very good business class deal, with only 48.000 Krisflyer miles, return!! Even the economy cost 50.000 miles return 😱😱. So, I talked to my husband, and the decision was quick.... definitely can't miss this offer!! However, because we have to fly this November, and it's still school period for the kids, unfortunately we can't take them, even though we have enough miles to redeem their tickets too 😥. I will write more in details about the miles redemption, the trip, and maybe some reviews on current Singapore Airline's Business class post Covid lockdown in another post 😉.

A Special Needs Family Classic

I asked my mom if she can help us and stay at our house to watch the kids. My boys are 15 & 13 now, and we have two live in helpers. But since the eldest is Autistic and still needed help from time to time, I couldn't just leave the boys alone with our helpers. They are nice and helpful, but they don't have the knowledge & ability yet to handle my eldest if he's having his melt down. Thankfully, my mom is available & said yes.

Excited to finally have a couple's trip after years (can't even remember the last time), I started to make bookings. Everything was good and set up, praying nothing bad will happen that can force us to cancel the trip. We needed this break. Suddenly, I got a WhatsApp message from my driver last night, asking if me & my husband are available to talk. Instant headache!! Feeling bad about this.

Now, before you start making comments, let me explain a little bit. I live in Jakarta, Indonesia, and fortunately for us, one of the benefits of living in a developing country is that drivers and live in helpers (maids, nanny, governess, etc) are quite affordable. Unlike in developed Western countries, their services are very expensive. Therefore, in here, a lot of middle income families can afford to hire one or even more live in helpers.

The Bad Thing

Continuing on, we talked to my driver, and yes my bad feeling was true....he wanted to resign 🤦🤦. Not going to talk in details why, but honestly we got disappointed. Why is this a bad thing at a bad timing? It's because my mom can't drive 😭. How can my kids go to school in the one week that their parents are not here??? Thankfully after a longggggg talk with my driver, he agreed to wait until middle of December when my kids' school holiday start.

A Peak Inside Autism

Is it problem solved? Not exactly. Having a son with special needs, Autism, though he has improved a lot since he was diagnosed and now able to make two ways communication (he was non verbal when first diagnosed at 2yo), he still has his struggles and limited abilities that are equals to maybe an eleven years old. So his maturity level is behind his age group by +/- 4 years. Recently, he got jealous a lot seeing his brother having a lot friends, talking to them a lot in group calls at home, laughing and playing together in online games, going to the malls with friends too, going on sleepovers, etc. He wanted to have all those too, but being a teen with Autism, making friends is really not his forte. He is often perceived as "weird, ackward, and sometimes annoying" by other kids that are neuro typical. Some can be quite mean, but some might ignore him simply because they don't know what to do or how to response, for the fear of ticking him off and send him to an episode of meltdown.

He has been increasingly sensitive too nowadays. Like the other day, my driver prounounced his name with a slight mistake, instead of X, he pronounced it as K. Boy it sent him straight to meltdown, screaming and crying in the car, having difficulty to calm himself. Luckily, his brother is there too, so he called me, and I talked to him, and managed to calm him a little bit. He was still pretty much upset when he got home, but at least he wasn't screaming and crying anymore.

In this past month, he started to go to and from school alone with my driver. This is the first time that I finally brave myself to let him go, give him the trust to learn to be more independent. Normally, either his nanny or myself accompanied him. His school is far from our home, about 45 minutes to 1 hour one-way. We have no choice but to travel the distance, because here in Jakarta, there's only a few schools with inclusion program and a special education department. He was in a mainstream school before, but I moved him to his current school when he was in grade 5. He's just not coping in mainstream school, and got more and more frustrated. It wasn't an easy decision to move him, and I cried my heart out when I received his acceptance letter. I will write more in details about this in another post. Nevertheless, it was one of the best decision I made. The distance is just something that we have to bare with.

This is why I never let him go alone with the driver. He is nice to my son but he also doesn't have the ability nor the experience to handle a special needs kid. The meltdowns are the most worrying factor, because I don't want my driver to feel overwhelmed and frustrated not knowing what to do to calm him, whilst having to focus on the highway road at the same time. Dangerous!! But my son insisted that now he doesn't want me to send or pick him up from school anymore. He's a teen now and he wants to go alone with the driver, just like his brother often do. Scared as hell, but I feel it's time to let go some of my grips and let him grow. I guess since it was own his request, it showed that he is ready.

The Great Big Worries and It's Best Friend Named Anxieties

However, now with my driver is resigning soon, and both me and my husband are overseas...yes my mom will be in our house but she won't be watching constantly either, my fear came back. Will he be ok?? Will my driver still take a good care of him when I'm not around?? The list goes on. Call me over reacting all you want, but trust me, if you are in my shoes, you will understand me. Even during the talk with my driver last night, a thought of cancelling the trip crossed my mind. After the talk, I went to my room and cried. Not only disappointed, but worries and anxiety hit me all together. Why now?? Why can't it wait until we got back from the trip?? Am I not allowed to have my peaceful moment for a while and not be in a constant rollercoaster?? Why we got this amazing deal if we ended up having to cancel it last minute??

Sanity is back! Selfish Is A Necessity Sometimes

Took me a while to calm my minds, and then I start to be able to think straight again. I decided I'm still going on this trip. I will put my trust in the Lord, to guard and take care of my sons when I'm away. Everything will be ok, and when I come home later, hopefully I will be fully recharged, ready to become my kids' driver once again, until we find a new one of course 😊. Selfish? Maybe yes. But I also need to take care of myself before I can take care of others. It's ok to be selfish sometimes. I know I'm going to be bitter if I have to cancel this trip, because it's not exactly something urgent that needed me to be here. It's just my own fear that's causing the problem. If it's something urgent obviously I would cancel it in a heart beat.

Blessing In Disguised

Going through everything in my mind, it suddenly hit me! Maybe, instead of all the why questions I had shouted in my mind earlier, God's intention to bless me with this surprise sudden trip is in fact giving me the break that I needed to recharge my batteries. Not only to allow me and my husband to refresh our relationship and have an alone time with each other, which is important for couples, but also to prepare me for what's coming ahead.

What made me calm down was remembering this:

The Trauma

I have a trauma of hiring a new driver. In every interview for new hires, I always open up with my son's condition to see if the person is ok with it. Though public acceptance for individuals with special needs is one of their human's right, we can't really force them either. So I always made sure they are aware of who they will be dealing with on a daily basis, and actually agree with it. One day, we got a new driver. Whenever he is with us he acted nicely. Unfortunately, it's a complete different story if he's outside. Within 1 week of working with us, he talked to my neighbors' drivers that my son is a mentally retarded idiot, that can't really talk properly, and sometimes screaming angrily like a crazy person 😱😱. Someone recorded him saying all these, and send it to my son's nanny at the time. His nanny loves him so much, she took care of him since he was 2yrs old. She got so angry hearing the recording, and reported it to me immediately.

How my heart was broken in pieces and my blood boiled when I heard it was something I've never experienced before. I called my husband in tears asking him to go home immediately and fire that heartless person. As his mom, I don't have the strength to hold my anger if I were to be the one to talk to him. I wanted to hit and scream at him so badly!!! I'm glad we caught him very early, otherwise I couldn't imagine what can happen. I'm grateful that God is so good, that He literally put someone we know there to record and alerted us with the proof. To me, what happened here is the proof and a reminder that God is always around, sending angels all over the place to protect my sons from harm. Thank you God 🙏.

Freedom Of Choice

Autism, whether is mild or severe, is very challenging and constant battles for us. It's not a rare occasion for me to be in the verge of a depression, though I rarely show this to the world. On the outside I might be all smiley faces, but I'm being torned in pieces inside, in silent.

Feeling angry, frustrated, confused, worried, and often felt lonely and constantly judged by the public eyes are like my best friends I wish I can get rid off ASAP!! I have only two choices, one is to do my best, let go, and let God, or going mentally insane. I chose the first one, for the sake of my sons. It's not an easy choice, it's a never ending learning battle for me to go through.

Do you have similar battles to fight like me? Please share yours in the comment section 😊. Let's support each other ❤️

Message to world:

Individuals with special needs are human too, they deserve to be accepted and loved. Please be kinder, all they ever want is to be given equal opportunity and be accepted.

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