Blessed by the Camp

It started one Sunday when 11-year-old Ethel came bounding from Sunday School, "Are we going to the church camp, Mom? All my friends are going and I want to go too!"

That's how I found out that Yio Chu Kang Chapel is heading to JB in June. Since the family didn't have other vacation plans, and Singapore was so hot without air-con, we decided to join the English congregation in Hotel Renaissance.

Delightfully, the camp theme was Hearing the Voice of God. How apt, since I was seeking God's direction about my career. I had spent two years writing a book on independent autistic adults. The book was completed and in fact sent to print the week before start of camp. And I'd been wondering - what do I do now that the project is over?

In my choice of work, do I pick based on what's easiest for me? Or what pays me the most? Which door should I knock at? What if it's the wrong door? Do I wait for God to open a door or do I go around knocking? If I inquire, does it mean running ahead of God? Does "waiting upon the Lord" mean doing nothing until circumstances point a clear direction?

Such was my uncertainty when I attended the camp which our heavenly father graciously guided me to. And what relief to he reminded that our God is a loving father. That seeking his will is not walking on a tightrope with no safety net beneath. It is holding his hand and trusting him to lead me to green pastures. I need not fear mistakes in decision-making because God can always reshuffle the cards for a fresh new start.

I also learned in this camp that God wants to speak to us everyday; it is not his intention to hide from his children. And so I resolved to meet him in Quiet Time every morning and every night (I am following the devotional Morning & Evening with Charles Spurgeon), on top of homework for Bible Study Fellowship.

I am happy to say that God has been very real in his communication through his word. Perhaps because I no longer treat Bible reading as chore to be completed, but a letter from a loved one that I look forward to receiving.

Beside teaching me to hear from God, this camp has blessed me by blessing my son Calder. Calder is autistic so he'd be jumping and clapping and laughing non-stop - generally creating embarrassing scenes where we have to apologise for the disruption. But church members have come to us to assure us that it's ok, that we are a community that looks out for one another. In fact, a few even affirmed his special-ness in a very positive way - "I really like how he worships God", "He responds in rhythm to the music!", "Such wonderful joy". One youth even told us they missed him when he's not around.

And because the church was supportive rather than judgemental, we could relax and enjoy the camp. Thank you for being so welcoming. You have welcomed us as members of a different congregation. You have welcomed us despite the strange character that we bring around with us. Indeed there's hardly anything stranger than the idiosyncratic ways of an autistic child. Thank you for welcoming Calder, the "stranger".

Allow me to edify by sharing this illuminating passage:

Matthew 25: 31-40

When the Son of Man comes in his glory, and all the angels with him, he will sit on his glorious throne...

Then the King will say to those on his right,

"Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world.  For... I was a stranger and you invited me in..."

Then the righteous will answer him,

"Lord, when did we... see you a stranger and invite you in...?"

“Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me."

(This letter to Yio Chu Kang Chapel was published in their bulletin the weekend of 4/5 Aug 2018.)

Bump

As usual, Calder was walking ahead of me on the travelator. As I tried to catch up with him, I observed that in his haste, he had bumped shoulders with a young lady. When I reached him, I put my arm around him, ready to remind him not to knock into people. I was in time to hear the lady's friend exclaiming, "Why did he bump you?" Using the same arm that was around his shoulder, I steered Calder around to face the lady. "Calder, say 'Sorry'," I guided. "Sorry," he complied, but he wasn't looking at the lady. (Did he actually know to whom he was supposed to apologise? Now I wonder.) So I tried again, "Calder, say 'Sorry'". But he spoke it over her head! At this time, the lady's friend stepped out and said, "It's ok, no need to apologize anymore." She looked clearly embarrassed.

Well, that's a day in the life of autism.

Laughing Matter

Autism brings different challenges in different seasons of Calder's life. The most recent one is inappropriate laughter. The family just returned from a church camp where his idiosyncrasies were graciously abided. But we had to keep him from disrupting the talks with his loud and continuous laughing. From admonishments to wordsearch tablet games to snacks that hopefully would keep his mouth busy, we tried in vain to stop the loud hilarity. Is he this way because we are too lenient? Can he actually control such laughter? I decided to seek the advice of the international autism community (on Facebook) and guess what I got?

The question:

My 13-year-old autistic son gets these laughing fits where he cannot seem to stop giggling (or can he?). Is this something common to you? What is happening, can someone advise?

Answers:

"I wish I knew, but I was the exact same at his age."

"This is common for me for sure."

"This happens to me sometimes... I think part of it is nerves."

"I used to laugh until I peed, then the fun was either over or doubled up because we were laughing that I peed myself."

"I get that when i haven't had  meltdown in a long time."

"I used to have giggle fits, it was fun!"

"My grandson does this and it usually results in everyone around him laughing even though they have no idea why."

"I do this because I'm funny as hell and crack myself up."

"I had those when I changed to a school that I loved.  It was far less strict than my previous one and I would go off into laughing fits with tears of laughter pouring out of my eyes.  When I laugh extremely hard there is no sound.  Teachers had no idea what to make of it but I got the Best Laugh Award in the Yearbook!"

"It could be autistic replay. Where a memory comes flooding through and its basically like we are right back there and are taken over by whatever emotion we had at that time. It happens to me a lot. Or he just thought of something funny. Which I also will do and laugh at while people look at me funny."

"It takes a lot of depth or very direct and silly obvious humour to make me laugh and I think that sometimes when I finally feel something is funny...it is built up.

Also...for my own children it can be a reaction to not knowing how to react, especially for my son.

I actually remember feeling this way as a child...it is common in my family to laugh when someone gets hurt...we learned that it hurt feelings and as we age we regulated it...but it seems to have come back in the children.

My son will get hurt and his sister will laugh..she doesn't go on long..but it upsets him.

When he laughed at my mother after a fall...he ran away because he knew it wasn't an appropriate reaction and he was embarrassed.

He kept saying he couldnt help it...since I experienced this myself when younger I understood but used it to explain further that his sister also can't help it and just like him it is a normal reaction. It comes from them not knowing how to react to someone's pain (they can understand and feel helpless and even it can seem silly that an adult has lost control, or that the depth of their feelings is more than they can express).

No one laughs in my family out of spite. We are truly gentle hearts deep down..."

"My daughter does this. And I want to reach back in time when any 'professional' said it was 'for no reason' and slap them in the face.  It's quite well explained by many autistics that they recall memories (happy and sad) VERY close to how they first experienced them. So a memory gives all the FEELS. Even new thoughts of something hilarious gives all the feels. My daughter experiences life so fully, from her head to her toes. I am autistic, too, but don't share this to the extreme loveliness my daughter does."

"I got in trouble at school often because of it. People's seriousness is funny to us because we see through actions. I also do it when I'm nervous, or I have habits of replaying things in my head as well, and it's like reliving in the moment over and over. I remember my principal and teachers were circled around me once because I was laughing at something someone did and they did not like it. They told me it was not a laughing matter. The more serious they got, the more I laughed. Different approaches are needed. We are not as likely to laugh at things we're passionate about, so really the best thing you can do is change the subject. Yelling at us and punishment will not do anything. My mom used to spank me with a dog leash till I bled and I still laughed through it all. A bit much to share but, just to give you an idea. Definitely just change the direction of the conversation instead."

"Isn't it great to have a kid that can see the funny side of life! My son sometimes does this too (he's 16), and I'm so glad he does. If we can't laugh at things, it would be a pretty depressing place to be. Be thankful for a happy, lighthearted kid, enjoy the moment and laugh along with him. Treasure the moment and remember it when times are hard or you are worried about how happy your kid is (I often worried about that). If it seems to be associated with any negative (eg having a meltdown shortly afterwards) then it might be a coping mechanism, (what a fun way to cope!) and in that case it's an early warning sign so you can reduce stress and hopefully prevent a meltdown. Enjoy your wonderful son!"

"Let him laugh......2 minutes of laughter will boost the immune system for up to 24 hrs.  He'll be the healthiest kid on the block."

"He's happy, he's obviously enjoying something, let him get on with it."

Journal Writing

One of the things that make Calder happy is when Mommy finds time to guide him in journal writing at the end of the day. Actually, unless I want to introduce a new vocabulary or encourage him to expand his scope of coverage, he doesn't really need guidance any more. I can just sit beside and nod at every sentence he writes, then as part of our routine, get him to read aloud the entry once over before giving him a hi-5 and then a hi-10.

Journal writing is best done when we have spent the day together, because then I can help him find the words to express his experiences. I have tried asking him to write journal when he's spent a day in school but we would get stuck if there's something he cannot put into words. Also, it's difficult to check accuracy when I haven't been with him. The best time is when he has had an unusual day with me. Then he would learn many new phrases and terms just by putting them down in words.

Until Calder started journalling, I never knew he noticed the things around him. He never spoke about them, so it was with great surprise that I found out he remembers them. It could be a phrase I used for a food he ate (e.g. "pork soft-bone") that many months later made its way into his journal, when he ate the food again. 

Left to his own device, Calder's journal would be filled with food he ate, transport he took and lift levels he went to. If it's a typical day, one journal record would read just like the previous day's. So I introduce variety by asking him, for example, what someone else ate. Sometimes I asked him to write down important reminders like coming out of the toilet himself instead of waiting for people to call him out.

When he has outings without us, I appreciate deeply when his teachers send me pictures (one or two would suffice) so I can ask what he was doing in those pictures if he has not already volunteered the details of that outing.

How did Calder begin writing journals? It probably started some five years ago, when he was 8. One day, I took a good nap. Yes, the "good nap" is crucial information because it gave me the extra presence of mind to suggest doing something different for bedtime. Calder's usual bedtime consisted of Bible story reading and a short prayer before his Daddy or I kissed him on his forehead goodnight. On this day, I was so energised I ventured to ask him what we did during the day.

Silence. Instead of giving up, I decided to help him answer the question. "We ate pao for breakfast..." I fetched a piece of paper and started drawing as I related what he did during the day. We stopped when we reached the end of the paper. That's when the teacher in me decided to get him to state, as I pointed to the drawings and short phrases, what he experienced during the day.

The next night - we did the same. And the following night too. On the fourth night, I was too tired to go through the whole procedure again. Very nonchalantly, I asked, "So what did Calder do today?" Imagine my surprise when he volunteered the correct answer without first hearing my "model answer". And using "and then?" I slowly coaxed the rest of the day's experience from him.

What a breakthrough! Calder has his own mind! He does register things!

Today, we have a collection of Calder's journals that he likes to read through. Sometimes he would even laugh reading them. He looks especially proud when I take pictures of his journal to send to a friend or relative who has been remembered in that day's journal.

Calder's journal, though simply written, has astounded many people. He can recall colours of seats he took, songs he sang, names etc. It is good evidence and a necessary reminder that behind the odd clapping and bouncing and otherwise-silence is a thinking boy who observes and remembers.

I look forward to the day when Calder can communicate with us not only through his journal but via conversations as well.

Dental Rumination

Went to the dentist this morning and was advised to have my wisdom tooth extracted. Decided to do it on the spot before return of the terrible toothache that felt like radiation of my left mouth, so bad I couldn't tell where the pain originated.

It's interesting that every time I'm subjected to the tyranny of dental equipment, I'd be thinking to myself: "You gave birth to your two kids without epidural - surely this is nothing!"

Then I would be wondering how Calder can take such assault to his sensitive nerves. And I'd imagine myself taking the pain on his behalf: "Ok, this is for you, Calder!" (I never have to worry about Ethel because she is stoic - amazingly brave since small - when it comes to dentistry.)

Of course, there'd be lots of prayers going on in my head as well: "Oh Lord, let me not be afraid. Give me peace. Let the dentist do just the right thing and not injure other parts of my mouth. Let Calder not have to suffer such pains...."

Well, that's how I got through my dental treatment, every time.

When Calder came back from school, I showed him my extracted tooth (already cleaned with vinegar).

"What is this, Calder?"

"Walnut."

Reward

Yesterday, a doting uncle bought Ethel her favourite jackfruit, so when the kids (P5 Ethel & her P4 cousin who's now in my care) finished their assigned work, I took out the jackfruit from the fridge and announced it's their reward.

"I don't like jackfruit; give me another reward," said the cousin. Ethel and Calder ate the jackfruit. Then I took out a pack of minty M&Ms that a friend gave me. "I don't eat minty M&Ms; give me another reward," said the cousin. Calder and Ethel savoured the M&Ms. I asked the cousin if he wanted to eat hash brown and he said yes. When the hash browns were ready from the air-fryer, I announced, "So here's your reward!" Cousin replied, "How is it a reward when everybody gets it?" "But I offered the jackfruit to everyone too," I reasoned. Cousin exclaimed, "Even those who didn't work for it!" Oh, so he was pointing to Calder. There was one hash brown left and since Calder was the biggest eater of us all, I automatically gave it to him. "Why does he get to have 2 pieces?" questioned the cousin. "Because he might get hungry," I explained, "Do you want another one? I can do another one for you." "Nope." But when he was out of the kitchen, I heard him chanting to himself, "Give me my reward, give me my reward."

After the cousin had left, I discussed this with Ethel and was astonished when she told me she used to feel the same way - why Calder gets the same reward when he didn't work for it. I told her maybe Calder's reward is for sitting nicely by himself when I was busy with her studies. Maybe he is being rewarded for not throwing a tantrum over being neglected.

Truth is: I cannot imagine not giving Calder what I openly give his sister. He wouldn't understand why. He would just feel sad, I think, for not being loved the same way.

"Should I be rewarded for sitting nicely?" ventured Ethel. I figured, "Different people gets rewarded for different things, and these are things that are more difficult for them. Actually, it's not that Calder doesn't want to do these things. It's that he cannot do them." "Yah, I thought so too," said Ethel, "That's why I never complain."

At bedtime, Ethel prayed that Calder wouldn't feel neglected. Time stood still for me then. Oh, blessed are the pure in heart, for they will see God (Mathew 5: 8).

Why help?

When you have special needs in your family, and you see another family in need, it's easy to think:
"I have enough needs of my own, so why should I help?"
On the other hand, you can also think:
"I understand what it is like to be in need, so I will help."

I was without a babysitter on Tuesday, and so was prepared to wait for Ethel to come home around 5pm before bringing both kids to Calder's bowling class (Special Olympics) which starts at 5pm and ends at 7pm. Ethel will need time to shower so I was expecting Calder to reach the bowling alley around 5.45pm. So I texted the bowling parent-group that Calder would be late for the above reason (the journalist in me readily detects potential puzzlement and so I always like to give clear reasons).

On Tuesday morning, I received a text from a fellow parent asking if I'd like her to drive Calder to bowling. Yes, that'd be great. Then Calder wouldn't need to wait for his lane to finish one round of bowling before joining in. And I wouldn't be hurrying Ethel like mad when she comes back.

When Ethel came home, she took some time to discover that Calder was not at home. When she found out that he's on his way to the bowling alley, she asked, "Then why are we in such a hurry?"

"It's because one aunty has two autistic children to take care of, plus a small girl."

It's a miracle of God's provision, deeply appreciated. Not easy a helping hand to extend, because an autistic child like Calder cannot communicate well and who knows what he wants to do? Frankly I'm not sure if I have the confidence to take care of this friend's autistic son like she has volunteered to take care of mine. She is the brave and very kind one.

A special-needs family reaching out to another special-needs family - it is a beautiful gesture that moved my heart.

Thank you, Yvonne.