Takiwātanga Podcast S01 E04 – When it all began

4 · 17 · 22

Takiwātanga with Lloyd I AM

My Own time and space | Love not Cure

S01 E04: When it all began

UNEDITED Transcription

Pre Intro message:

When was the time you suddenly noticed that something is different with your child and what did you do about it?

Intro:

This is Lloyd I AM and you are listening to Takiwātanga, love not cure, exploring autism one strength at a time.

Body:

Intro message…

Here is a little backstory about our autism journey.

This is what happened…

Me and my wife decided to move here to NZ sometime in 2013 and at that time we only hav one child. We are a family of five now with 3 kids. A boy,  a girl, and boy.

We were migrants from the Philippines.  Since we came here, we have never traveled visit our family until My wife and I decided to do so. I think that was around 2019. At that time my kids were 7, 4 and 2. The family was excited because of that. It was the first time traveling outside of NZ since we got here as a whole family.Everyone was excited especially my kids. We were all excited packing things up and planning where to go and who to visit when we got there.

Everything seems to be going according to plan. 

Traveling to the Philippines takes about 12-14 hour and that’s depending on the route your flight takes so it could take a while and sometimes or for most of the time your flight will have to stop over. It was a pretty quiet journey when we got there especially during flight and in between stops. I think I can only remember a travel hiccup when my youngest son showed some resistance to wearing his seat belt. This is when he was sitting on her mom’s lap.  He was resisting and helped us with that, but it took a while to settle him. Also there is this one time that because the plane was about to take off, we forced him with the seat belt, and during the take off, he was crying and shouting. I remember when the plane has settled in air, he was still crying and couldn’t stop. 

Cutting the story short, we landed in the Philippines the following day. 

We stayed there I think about 3 weeks. Our schedule was full that time visiting families and friends. Great times meeting friends and families from my side and my wife’s family side. Going out and about, eating in a restaurant catching up with the food we missed as well. 

Most of the places we went to were either crowded  and most of the time noisy and very busy. Everything seems to be working ok but in the middle of our 3 week visit, we noticed a sudden change in the behavior of my youngest son. He suddenly doesn’t want to go outside the place we were staying in. He only wants to be with his mum. He also started to get agitated for most of the time we were out. 

Though we’ve seen this behavioral change, we just thought he is just being a 3 year old kid having tantrums because he just doesn’t want to go. So we just carried on with our plans, went out and met with more friends and relatives and enjoyed our trip. 

So it was time to go back home to NZ, and going back here was not a nightmare experience as everything seems to be calm for my kids, especially for my youngest. We didn’t notice that same agitated behavior from him during the flight.  So we just went back home and back to the same routine we had.  

And then, about a few weeks after coming home, we noticed that my youngest stopped making eye contact with us every time we were talking to him or trying to communicate with him. Also  he started to wake up in the middle of the night. He wakes up somewhere between 12 am to 3 or 4 am. When he is awake at night, most of the time he is shouting and sometimes crying loud. 

It felt different during those times and we knew there was something happening to him especially with the sudden changes in his behavior. We were not just sure what that was.  Back and forth conversation with my wife trying to figure out what is happening to my son, also doing our own research and so on. I think it took us about a month or two to get him seen by our GP.  We never thought of actually bringing him for a consultation because we were under the assumption that it was nothing serious or something like that. We thought given he was just at such a young age, it was just ok.

The good thing about our situation is that we have other two kids so we have a comparison of behaviors that we have experienced during the time my other two kids were at that age, 2-3 years old. It was pretty obvious something was not making sense. My wife also starts having suspicions and she starts to do some research about the behaviors we are seeing from our son.. 

Cutting the story short, we decided to see a doctor. This is to make sure that there is nothing wrong with my son. So we went ahead and met with our doctor. We gave as much information to understand the whole picture and understand what can possibly have triggered the sudden change in behavior of my son. After the consultation and based on the information that the doctor have.  We were told that he has autism. We were also told that the spectrum is wide and we need to have him seen by a specialist just to be sure. So yeah,we were referred to a specialist to get a more detailed assessment including blood tests. 

From the time we were seen by our GP until the time we met our specialist doctor, it took us about 7-8 months or so. I remember that was the hype of covid lockdowns and a lot of appointments got delayed including ours. I actually did a follow up about our specialist appointment and I remember I was talking to the staff of the hospital and they told me there were about 200+ appointments on the waiting list as a result of the covid lock downs. Just imagine that! I have no idea now on what’s in the backlog but at that time,there was so much uncertainty for our son because we couldn’t access help until he was seen by a specialist.

Few months later my son was seen by a specialist and a speech therapist. There were two sessions, and about a 1 month gap in between sessions. During the interview sessions with the specialist, I think this is important to say that we were very upfront with them and mentioned that we have suspicions that my son may be on the autism spectrum. 

In my opinion, again this is just my opinion. The success of any assessment is also coupled with acceptance from parents that the child needs help. Being upfront and accepting of the situation helped a lot during those sessions. Based on experience, it helped me and my wife get a clearer mind and come up with the best approach to help our child.

So that was the start of our journey on autism. There were no problems with his blood tests by the way. Right now we are looking at having his hearing tests to rule out any hearing problems.

After the assessment, the district health assigned us with a coordinator, to guide us with how we can access the different support available. We were provided with information on what funding we can access like carer support, free nappies, therapists, trainings and so on 

In the succeeding episodes I will talk more about those training sessions.

In addition to this, we are working with my son’s transition from kindy to primary. This is on the ministry of education side. So aside from the coordinator assigned to my child from the district health, there will be another support on the education side. In the future, I will also publish episodes around this journey.

There are a lot of challenges that we have encountered during this journey. I get that and I know there will be more ahead. Also we have this fear of covid, uncertainty, and then balancing our attention with our kids because there are three of them and the other two also have their own needs. And then the family gets sick and so on… by the way I am not complaining nor comparing my situation to anyone, I know this is part of being alive I am just saying this to make a point. Life is challenging already, but we should always remember to live it and enjoy it with our family. 

Any help available to us I would suggest to grab them no matter how small or big because this will help ease some of the challenges we are already going through. Any opportunity available financial support, learning support grab it by all means don’t hold back. Don’t be ashamed that you are getting help. Find your support group, or support team, who can help you in this journey. No one should be alone in this.  This is for you and your family so you can live a better life and for your autistic child to get not just the support they need but also learn the life skills they need so they too can feel the joy of living. 

The key thing here as parents is to learn as much as we can about autism, about, our kids. What skills do you need to improve the quality of your life?   If you want to be patient so you can help your child more, study how to be patient, If you want to be happy so you can share this happiness to your child, study happiness, If you want to learn more about autism, study autism, attend training sessions. Anything that can help you deal with your situation and live a happy life while enjoying the process.

Since I want to cement what I have learned from those training, I would like to discuss these on my succeeding episodes. I will be giving my insights, approach and some examples and how we can leverage on the strategies. Stay tuned on these episodes.

I hope you did get something out of this episode. What I like about our journey up to this point is every day as a parent I learn a lot from my kids, especially from my youngest who has autism. I know there is so much ahead of our kids and as parents, our success lies in being able to guide our kids to the path where they can be who they want to be and experience this joy of living.

How about you, what do you like about your journey with autism? Comment down. Don’t forget to like and share this channel so others can also find us. Thanks.

For our next episode, I will be discussing some summary of the training that we have attended.. Stay tuned!

End:

Every autistic person is different and there are a lot of tools and strategies out there that you can use. If you fail with one strategy, don’t stop, keep moving forward. Always remember that for every failure you encounter you are one step closer to your success. 

Thanks for tuning in, I hope you enjoyed the show, until next time…

Me mutu te Whakawa Haere, Let’s stop judging others

Me Mahi Tahi Tatou, Let’s all work together,

Kia Maia – Kia Kaha, Be brave and Be strong

About Takiwātanga

Hello!

I Am Lloyd I Am

Takiwātanga Advocate and Proud dad

You can also follow me here

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