What Do I Do
What do I do when…
1. Medical-Related Issues
If there is a sty, use hot-compression:
1)Take a cotton wool, put in hot water, and squeeze dry.
2) Tell Ryan is it hot.
3) While placing on his eye, count down from 10 to 1.
We need to adequately prepare Ryan for this:
1) We would role-play what it will be like
2) Ensure he wears sleeveless shirt (assuming the injection will be on his upper arm)
3) Start applying numbing cream repeatedly on injection site before injection
4) Bring along a visual schedule to let him know what to expect
5) End the session with something positive – usually will bring him to a restaurant for his favorite food.
You can read in more details on how we survived the covid injection here:
Ryan had a metatarsal fracture on his foot in Septemeber 2024. The whole experience was captured in our Facebook post. Please refer to this link:
Ryan is very fearful of the dentist because of his past experiences (he was forcefully held down). He will not go into any doctor/dentist consultation room. The dentist has to come out to meet him.
Thus, when he has cavities to fix, he will need to undergo GA in the theatre, which is very expensive.
Cavity prevention in his daily routines is then very important. Ensure he brushes his teeth properly and gurgle with salt.
The dentist who has Ryan’s records is Dr Tan Wee Kee of Tung Shin Hospital.
- Ask for 1st surgery of the day, especially if Ryan need to fast.
- Must bring along ipad and make sure you have data, don’t rely that wifi is good at the hospital
- Don’t have water or food in his bag, or he will keep asking for it before surgery. Feed him well before he goes to bed the day before.
- there could be medication he could take before surgery to calm him, ask the doctor about this.
- Bring paper, pen and Timer – to explain the sequence of events and how long he has to wait.
Ryan had taken X-ray for his teeth before.
Most importantly, is for you to find out how the X-ray procedure will be like first.
For teeth, he needs to sit still while the machine goes from left to right, and then right to left of his head. So, we explain to him using gesture mimicking the machine on what would happen. Generally, that would work. If there is a video that you can show him, that would be better.
We usually request that someone who knows him stays with him while Ryan is being x-rayed.
While the x-ray is being taken, Ryan knows how to stay still. We support by counting up to 10 with him as the x-ray machine moves.
When there is an ulcer in his mouth, Ryan will frequently go the mirror, trying to see where the pain is coming from. You will also notice his face in discomfort when he brushes his teeth.
Apply ulcer cream. Please note some ulcer cream like Bonjela will bite, and painful when applied, so avoid those. Check with pharmacist which ulcer cream will not have this effect.
We are teaching Ryan how to identify the right medical cream to apply, hopefully in the future, he can do this himself.
Give: Chloramine /Claritin (anti-histamins)
Give Fluimacil A.
AVOID: Bena-Expectorant – he went into a meltdown when last given.
Give Panadol, cold-press. Lots of water.
If he does not improve after 3 days, Go see doctor to obtain Anti-biotic.
So far, Ryan does not see a regular GP.
The GP who has seen other family members (as of March 2024) is Dr Pearl at Pearl’s Clinic of Care, Plaza Damas, KL.
Ryan will allow you to apply anti-septic cream and plaster. However, he might remove the plaster quite soon after.
As of 2024, we are teaching him to apply the right medicated cream, hoping in future he know how to treat this himself.
Give charcoal pill
- When he was still a baby, he was having high fever. His lips turned blue before reaching a doctor.
- January 2019 – When he was in the kitchen cooking his lunch.
- February 2025 – When he was in the kitchen cooking his lunch.
- Notice uncommon mistakes in daily tasks.
- Watch for stiffening in neck, face, or rolling back of eyeballs.
- Support him to prevent falls and head injuries.
| Things we must do: | Reason: |
| 1. Make sure Ryan is on his side, and not lying on his back | He might vomit during the seizure – we want it to flow out and not into his throat, and cause him to choke. |
| 2. Cushion him as his body is jerking – you can put pillows or use your lap/body to make sure he is not hitting his body against any hard surfaces. DO NOT try to move him to another place. | He has completely no control over his body, we need to do this so that he does not injure himself. |
| 3. Do Not put anything into Ryan’s mouth. | Older generations might tell you to put a spoon /towel into the mouth to prevent biting of the tongue. THIS IS DANGEOURS. You might end up suffocating Ryan or causing more injury. |
| 4. Remove things that might injure him. | He has no control over his body. If he is seizing and constantly knocking against something – remove that thing to prevent further injury |
| 5. Don’t move him even after he stopped seizing. | Let his body rest – his brain and body need time to “reboot”. |
| 6. Take note of how long the seizure lasted | This information is needed to update his doctors. In Malaysia, the neurologist who has Ryan’s records is Dr. Lim Kheng Seang of UMSC. In Singapore, Dr Geraldine Goh Shu Chen (Psychiatrist) has the most complete of Ryan’s records. |
| Things we must do: | Reason: |
| 1. Do not move him even after he stopped seizing. | Let his body rest – his brain and body need time to “reboot”. |
| 2. Support him when he wants to get up. | He will still be disorientated and unsteady on his feet and might fall any time. |
| 3. Ryan will want to lie down and sleep after the seizure. | This is expected as his body is most likely tired and need to rest from the trauma |
| 4. Take his Blood pressure every 2 hours for the rest of the day. | There is always a risk of more seizures and stroke after a seizure. |
- Long waiting time – Ryan has difficulty with waiting, especially when there is no indication how long we have to wait.
- Hospital has no numbing cream – thus sticking needles into Ryan was a struggle and he kept wanting to pull the tubes out.
- CT Scan – Ryan’s ability to stay still long enough to get a CT Scan is close to zero.
2. Non-Routine Situations
Ryan travels well on the airplane. The longest flight we have been on is an hour.
Booking seats – when we travel as a family, we put Ryan at the window seat with a family member next to him, right in front and behind him. Reason is he frequently will rock back and forth on his seat – this might annoy people seated in front or behind him.
Things to pack: iPad, timer, snacks for him to eat while on the plane.
Ryan gets the iPad only when we are seated down waiting. He will surrender it when we are travelling in the car/bus/plane.
On night that Ryan has trouble sleeping, if he is quiet, we let him be.
However, if we hear him sounding frustrated, or he has not been sleeping much a few days in a roll, he can be given the following to help him sleep:
1) 0.25mg Xanax (note Xanax cannot be given daily for more than 1 week)
2) Chloramine – it is an anti-histamine, but it also helps with sleep.
Ryan’s hair is cut really short for 2 reasons:
1) don’t have to comb
2) he does not wash himself well, leaving suds often.
So having crew cut makes hair-managing way easier.
Ryan had not been to a hair-dresser for ages. He would scream when he gets a hair cut in a saloon. So, we cut his hair at home.
Important to note: Ryan must sit in front of a big mirror to see himself as his hair is cut. This helps to calm him.
We use an electric shaver. Start shaving from his left to his right, then his top. If you linger too long beyond that, he will start protesting. After cutting his hair, he will immediately go into the shower.
We had tried getting Ryan to shave himself in the past, with a visual support. He was able to do it on his own with an electric shaver, but there were 2 problems:
- the shave was not clean enough
- Ryan tends to press the shaver to his skin very hard, so it is often quite red when he is done.
So, we decided this will be one of the We-Do activity, we do it with him. Ryan will do part of it, and we help him with the other parts. This video shows how his dad does it with him:
Ryan Shaving (2024)
Hiding food from Ryan is a skill. We always assume he is watching us to figure out where we have hidden the food his likes. He has outsmarted us many times.
We do this due to health reasons and also there are food that would make it more irritable – and unfortunately many of which are food that he likes.
Watch this video for suggestions:
Ryan & Food (April 2024)
Ryan does not like this. However, he will let you when you insist.
We usually do this with him lying on his side, on the bed. He is Ok when we count down from 10 as we do this.
Please make sure you stop doing it when you reach 1, otherwise you will find it is much harder for him to cooperate with you again.
We cut Ryan’s nails as part of his bedtime routine. He can cut it on his own, but it will not be as short as we like it to.
Communicating with Ryan – the best way to do it is to have a visual he can see while you talk to him. It can be as simple as writing on a blank piece of paper as you talk.
When informing him, remember KISS – Keep It Short & Simple.
When informing change, it is important to also inform him what does NOT change.
More information can be found in this blog link: https://justautismandme.wordpress.com/2021/06/02/explaining-change-in-the-daily-schedule/
Every time Mummy has to travel, oben the whiteboard will visual to inform Ryan how long Mummy will be away.
If he does asks, the best thing to do is to point back to this visual and show him how many more days Mummy will be away. Besides that, it is important that Ryan’s daily routines go on as usual. Being meaningfully occupied throughout the day is a key solution.
More information can be found on the following blog links:
https://justautismandme.wordpress.com/2021/06/27/532/
https://justautismandme.wordpress.com/2017/09/20/he-didnt-ask-for-you-these-2-weeks-best-news-ever/
Message to present and future caregivers
What I want for Ryan’s future
My promise to Ryan
that he will lead a life worth living.
A life that:
“Allows him the maximum level of Choice and Control
His days filled with genuine choices and interests
Has a balance of Work and Play
He is surrounded by people who loves him”