Bye Auntie L

 We got to hear that Auntie L is retiring. Auntie L has been seeing Vera since she was a baby. From putting her in her first seating in a My First Years feeding chair all the way to this Zippie, which she customised to support Vera's worsening scoliosis. 

Auntie L came to adjust Vera's wheelchair for the last time today. We are very blessed by the years of her expertise that have benefitted Vera. You will be missed. 

Purple Love

Mothers of children with rare conditions coming together as one to sing "Let Love Speak" -
an original song composed by Sally Kwek (on-stage second from left) for inclusion awareness.

Once a year, Singapore comes together at the Purple Parade - to stand side by side in esprit de corp with those with Special Needs. 

I've always been hesitant to bring Vera to crowded places. My paranoia is warranted. One bug caught and to the hospital she goes. And after the scare earlier this year... I've realised over the years that it's just not worth taking the risk. 

Today, I struggled to make a decision, but finally brought her. I joined a group of RDSS mummies and their children who also have rare conditions on stage. Despite some of their children being on breathing machines, needing on-the-spot suctioning, or being prone to sensory over-stimulation, they bravely brought them to the event. 

We all wanted the same thing: To show the world that our children, no matter how weak they may be, how unresponsive they may seem, how dependent they need to be, how different they look from everyone else - their lives matter. We wanted to stand up and be counted with them, and for them.

Together as one, we sang Let Love Speak - an original song by Sally Kwek. Its powerful message: That even though "we may look different", even though "we may not speak the same" as those who are non-verbal or those who have speech difficulties, the best language we CAN use to communicate with them - is LOVE.

After the performance, Vera started to stiffen and her arms started to shiver although it wasn't cold. The booming music, bright lights and loud cheers must have been overwhelming for her. We quickly brought her to somewhere quieter and she knocked out, then woke and kept choking on her increasing secretions. Fingers crossed nothing develops. 

Along the difficult points in my journey with Vera, I've always looked to fellow mums to inspire me to go on. These mothers fight tooth and nail for their special one, they want the world and its unforgiving attitudes to change for their child, they go all out to explore new terrain, to forge new paths for their differently-abled child where there are none. Sally is one such mom.

Thank you for giving us the opportunity to let our children's "voices" be heard. Because many of our children can't speak, we as their parents have to be their voice. We have to take every opportunity to calmly address a stranger's ignorant comment, to be the bridge between our kids and abled ones, to help them realise that EVERYONE is different, just in more or less obvious ways.

Every one of us, dad, mom, sibling of a special child, need to BE THEIR VOICE and believe that our own small encounters can effect little ripples of change that can eventually make a significant difference.

RDSS Xmas Party

This is the first year we attended the RDSS (Rare Disorders Society Singapore) Christmas party. Vera is a beneficiary.

I sat at the same table as another blogger mum - Mary - who is similarly raising awareness of her daughter's condition, Trisomy 21, or more commonly known as Down's Syndrome, via her blog Simply Lambchops.

Her daughter K is a real sweetie.

Vera stayed awake throughout the event (her usual naptime is 12-2pm) and was exceptionally cheery and engaged. She really seemed to be enjoying herself, with no fussing at all.

She was by my side as well as I sang "Christmas is Christmas", a song that I wrote. 

Who would have thought my little Vera (well, not so little now) would live to accompany me on stage, bringing new meaning to a song written before she was born.

4 Similarities between Diving and Having a Special Needs Child

Ian and I were avid divers before we had Vera.

Recently, I was musing how diving and having a special needs child have several things in common. 

(This post will make more sense to you if you've dived before.)

1. "Descending": going underwater

Having a special needs child is like going underwater in many ways. You are rolling along, going mostly forward in your life, and when you suddenly have a special child, you pretty much stop in your tracks and go down deep instead. You "descend" into a different space, and like in diving, learn to breathe in a whole new way - through your mouth instead of nose. The experience is alien at first and it takes some getting used to, but it gets more natural with time.

2. "Buoyancy": the ability to maintain your position underwater

At first, it's hard to find the right balance. The early days of parenting a special child are akin to a novice diver going up down up down underwater, pumping too much air into his buoyancy jacket and floating up, releasing too much air and sinking down. With time, you realise that your own body has the ability to fill with air, and you can control your own buoyancy, by acutely tuning in to your own breathing. This is the stage where you get a hang of caring for your special child, and realise that you finally can breathe slower and easier. 

3. "Decompression": the act of staying motionless in the water to allow nitrogen to leave the body

Just as nitrogen builds up in a diver's body the longer he stays underwater, stress builds up in any caregiver of a special child. There are so many burn-out factors: day-long heavy lifting, dealing with behavioural challenges, or events such as seizures or vomiting in the night. Every caregiver needs "decompression time" before they can ascend to the surface. (A much needed massage is in order?)

4. "Buddy System": the process of having mutual support during a dive

Every diver who values his life will go down with a buddy. The special needs journey is hard to walk solo. A partner who pulls his or her weight, a trusted caregiver, are crucial to ensuring the best possible outcome for the special needs child. 

While life is pleasant for those on land, those who have ever dived into the world of a special needs child will know that it holds deep mystery and a pure, raw beauty. Our life happens at half the pace, so that we can appreciate every movement, every expression in the amazing ones before us. 

Bath Chair Base Solution

We've been bathing Vera in this Canetons Bath Chair for years. 

She's really outgrown it, so we've had to look for another bath solution.

Limitations:
1) Our shower area is really cramped.
2) We are looking at a basic special needs bath chair, knowing how costly they are.
3) We have limited space in the bathroom to store it.

We settled on the medium Otter Bath Chair at S$450 from DNR. There is still room for height growth, and the tilting allows us to wash Vera properly.

Next, we needed a base for it to sit on, so we can stand and bathe Vera.

The problem was, the accompanying Shower Stand base was too broad, and could not fit into our shower area. It was also extremely heavy and costly at S$350. Just for the stand.

We had to find another solution for the base.

I got excited when I googled and found another narrower version of the base for the Otter, available in Australia. It would fit our shower perfectly.

But when the quote came back, our jaws dropped: S$995. For a base.

That's when Daddy stepped in to work his magic.

He figured some sort of A frame would suffice. We could custom make it, but then he found this selling in Singapore:

A lightweight, foldable made-in-Japan frame designed to take a man's standing weight. It could lock in place and seemed stable enough. Price of the base: An affordable S$62

The next question was how to secure the bath chair to the base.

Daddy bought two L brackets and riveted them to the base. They would hold the chair bars.

Then he used stretchable hooks to anchor the chair to the base.

Voila! Vera's new bath solution:

The best part: Everything folds neatly under our sink, with space to spare.

Hooray for our handyman!

Vera's Checklist

Checklist of a regular 7-year-old child:

Things to do in 2015
1. Chinese Enrichment
2. Swimming lesson
3. Art class
4. Piano lessons

Checklist of a 7-year-old child with multiple disabilities:

Things to do in 2015
1. Eyes - Detailed eye exam under General Anaesthesia (June)
2. Ears - Detailed ear exam (ABR), get fitted for Hearing Aid, drainage of middle ear fluid under General Anaesthesia (June)
3. Mouth - Begin Oral Tasting seriously and not in an adhoc manner (in progress)
4. Lungs - Get annual overnight Sleep Study done and adjust settings for optimal breathing support (done)
5. Feet - Get new pair of AFOs made (done)
6. Equipment - Get one size up Bath Chair (and figure out how to custom build a base that can fit into your shower area). (in progress)

These are the things Ian and I busy ourselves about.

So what about Daen?

Chinese Enrichment, Swimming lesson, Art class, Piano lessons are all the things I would like to give him, but as of now he is getting none of them. I can't keep it up, even if he can.

A Rare Gem

At Rare Disease Day 2015 - The disorder may be rare, but the love isn't.

We attended Rare Disease Day for the first time this year, an event organised by Rare Disorders Society Singapore. 

Through the Society, the struggles of families with children living with rare disorders have been receiving more attention and acknowledgement. 

Despite their extreme physical and mental disabilities - our special children play an important role - in reminding us that our purpose here on Earth is not to strive for more money or more fame, but to care for the frail and fragile amongst us.

Bath Chair Brainwave

Vera's getting heavier to lift, so we needed a raised bath chair where we could stand and bathe her. I'd wracked my brains for almost a year - looking at all sorts of pediatric bath chairs in the market but finding none suitable. They were either too bulky to enter our small shower area, or too expensive (the one that worked cost S$2500!)

Then came the a-ha moment: Why not use Vera's feeding chair as her bath chair? 

The material was perfect for bath use, there were no metal screws to invite corrosion (okay just one), and it was very lightweight. The cost? S$169, a fraction of special needs bath equipment.

Stand goes into the shower area first.

Chair is placed on top.

Suction mat prevents sliding.

Water collects in the chair, so Ian drilled some holes at the lowest point to drain it out.

Look how snugly it fits under the sink for storage!