What Calder may be saying,
which is why I won't give up:
I may never be as
good
as the others.
In fact, I would
fail
again and again.
Will you still love me?
Will you hold my hand?
Will you risk the trust
that even though I was not ok
yesterday,
I can be ok
today?
Will you determine to
celebrate my strengths
And forgive my weaknesses?
Again and again?
Will you persist in believing
that I can make it
one day?
The afternoon did not go well. Shortly after entering the bowling alley, Calder started laughing. This was not the happy giggling that sometimes comes over him, but more of force-start cackling. When I approached him to focus on the warm-up exercises, he started edging off. It's like we were like poles of a magnet - as I moved towards him, he moved the distance away, meanwhile looking like he's ready to take flight. So I got ready to do what I've started doing when he exhibits such behaviour during bowling training - get him to stand at the lockers behind (there's a nook to hide there) where he can laugh all he wants (and not run away) in between his bowling turns. But two well-meaning moms told me they'd handle him and sent me off on an hour's break. Since I can never be sure if my own methods work, I agreed to let them take over. I spent the time working on an article I was supposed to write for a newspaper. Another mom asked if Calder can stop playing for a while to teach him that he has to behave. I said ok (whatever that works, dear). When one hour was up and I returned, Calder was no longer laughing. But he had spit all over his shirt and pants and even on the common seat. The Cantonese would say at this point: "No eyes to see". Immediately, I brought him home.
I remember what a fellow parent shared at a seminar- that special-needs parents cannot be "self-centred" because if we focus on ourselves, we think our children's behaviour or performance reflects on our capability as parents and that makes us want to fix our children (instead of accepting them). Indeed, among the many dark thoughts floating around in my head, I imagined what I must have looked to the other people at the bowling alley: Tsk tsk, this parent doesn't know how to control her kid. Tsk tsk, this parent is irresponsible (where is she when her kid is creating a havoc?!). Tsk tsk, this parent cannot make it.. Which reminds me of a Bible verse that I read and remember since young:
"It is dangerous to be concerned about what others think of you, but if you trust the Lord, you are safe." Proverbs 29:25 (Good News Bible)
Back home, I got Calder to wash the spit off his clothes (first time for him) and had him revise what he'd done wrongly at the bowling alley - "I cannot laugh laugh. I cannot spit spit. I cannot run away." He had sobered up so much by then that I had no heart to scold him. In fact, I became rather confused whether he could have controlled what he did at the bowling alley.
But heaviness had descended upon me and I felt like boycotting all the tasks at hand.
The next morning, he actually gave me an amazingly sweet smile when I went into his room to wake him up. But I couldn't respond with enthusiasm - the melancholy was on me. He caught the tone of my brusque instructions and started acting strangely again - closing his eyes and freezing when he should be dressing up, and then trying to use puckered lips to turn off the light.
I felt like I wanted to sleep for a hundred years.
I usually do my devotion right after Calder gets onto his school bus. This time, I prayed, "God, speak to me. I need to hear from you."
Guess what the day's Bible reading was?
Luke 22:46 NIV:
“Why are you sleeping?” he asked them. “Get up and pray so that you will not fall into temptation.”
And in my prayer journal, I responded:
"Thank you for speaking to me, Lord. I will turn to you instead of looking inward and indulging in self-pity. Teach me what to do, how to be a good parent."
Amen.
Over the weekend, I saw that Calder had become very happy after he finished his lunch. Probably because his stomache had been satisfied and also because the family was sitting together, he started bubbling with giggles. And he put his hands over his ears, I believe, erroneously thinking that he could muffle his laughter that way. After he left the table, we started talking about how, if he laughed hysterically, we wouldn't be able to bring him into Malaysia because he would have problem crossing the customs. The next thing we knew, his exuberance had turned into distress. He started crying and biting his finger and knocking his knuckles onto hard objects and wanting to stamp his foot. Ethel observed that he must have heard us talking about him and felt sad that he couldn't go Malaysia (yes, it's a grave mistake to be talking that way about him within his earshot). The next day, she reflected that he's very temperamental, switching his moods so drastically. What I saw, though, was an overflow of emotions - how happiness could become hysteria and sadness become agitation. Perhaps what causes him instability is this overspill of whatever he feels.
A few weeks ago, Calder was on a long bus ride with me when he suddenly announced, "Urgent." My heart took a leap - it's the first time he'd verbalized his needs so clearly. In my excitement, I responded, "Oh, you're urgent. Good talking! We will be reaching soon, then you can use the toilet. Wait a while more, ok?"
Two days ago, while at the bowling alley, he leaned towards me, sought my eyes (this time unmistakably addressing me) and drawled, "Hungry." Fireworks went off in my head! And most enthusiastically, I gave him the yogurt biscuits in my bag.
Later, I wondered: Is it such a big deal - to be able to say these two words? I told my mom about "hungry" and immediately she exclaimed, "Wah, first time!"
Yup, definitely a cause for celebration.
Calder likes to eat many fruits. Orange is one of them, so I figured I should teach him how to peel one. I sliced the orange skin with a ring peeler, and passed the orange to him together with a plate. So he peeled the orange and left the skin on the plate as he ate them slice by slice. Then I thought I should teach him how to slice the orange. So I passed him the ring slicer and taught him to glide three circles around the orange. Then I thought I should let him take the plate and the slicer himself. Now I just have to pass him an orange and sit down to watch him:
1. Wash orange.
2. Take plate.
3. Take slicer.
4. Remove any sticker from orange.
5. Slice 3 circles around the orange.
6. Peel off the orange skin.
7. Detach the slices and eats them one by one.
8. Pour away the orange skin.
9. Wash the plate.
10. Put the plate back on the rack.
11. Rinse the ring peeler.
12. Put the ring peeler back on the hook.
Next time, I'll ask him to take an orange from the fridge himself.
And maybe the next next time, I won't be in the kitchen when he eats his orange.
Letting go a step at a time.
Calder ate yogurt and an organic apple (skin on), and left the kitchen. I didn't see him in the living room nor bedroom and was wondering where he'd gone when I spotted him loitering in the bedroom toilet.
Me: What are you doing, Calder?
Calder: Flossing. Food stuck in the teeth.
Wow.
What a breakthrough - the initiative, and the understanding of the function of flossing.
Hitherto he had only flossed at bedtime. To think that he can break a routine to achieve a purpose - the potential is exhilarating.
These few days, I had been consciously verbalising reasons behind things we do, thanks to an article on improving the problem-solving skills of autistic children. So the night before, when Calder was flossing at bedtime, I explained why he had to visit every gap - to dislodge all the food in between the teeth.
I feel like a tape recorder sometimes, going on with such running commentaries, especially since Calder doesn't reply.
But looks like it's worth the effort.
"How is Calder these few days?"
A question like this is not difficult to answer, unless Calder is around during the answering. It's the same reason why I don't bring him with me for autism talks anymore. Because unless it's all good news, talking about him would bring up memories of misbehaviour frowned upon. Reminding him of past misbehaviour, beside likely making him sad, is sore temptation to make him repeat that behaviour. Because he gets fixated on whatever is foremost on his mind. That's why if I don't want him to point at people's eyes, it's much more effective to distract him with another activity than to warn him "don't point" or "don't keep laughing" or "no spitting". Recently a fellow parent sent me an article about giving statements as prompts instead of issuing instructions. The writer reasoned that statements give more room for choice and initiative. So this morning, when Calder's school bus had arrived but he's still seated (frozen) at the void deck, it's all I could do not to push him forward. And instead of ordering him "go", I said, "The bus is here." Communicating with Calder (and in his presence) has become a high art indeed.
Was at Bartley Christian Church last Saturday for a Special Needs parent panel discussion. Had a book table set up and I was wondering why more people were buying "Come into My World" than the more recent "MY WAY". Then I remembered that in sharing about my frustrations over Calder's meltdown when he was young, I'd mentioned the title of my story in the earlier book -
"My Mommy is a Bully".
At book tables, people often ask me the difference between my two autism books. Let me attempt to list the suitable readers for the two titles...
"Come into My World: 31 Stories of Autism in Singapore"
Suitable for:
1. Families with newly diagnosed autistic children.
2. Parents wondering how to cope with their child's autism.
3. Parents feeling lonely or isolated for having an autistic child.
4. Parents who are in denial regarding their child's autistic traits.
5. Caregivers wishing to learn from other families how they can help the autistic child.
6. Teachers wanting to understand the family situations of autistic children.
7. Extended family members who can be more accepting of the autistic child.
8. People who wish to understand the needs of families with autistic children so they can help them better.
9.The general public who needs to understand autism better so that autistic children can come out of the house without their parents being judged or derided.
10. People curious about how autism affects lives in Singapore.
"MY WAY: 31 Stories of Independent Autism"
Suitable for:
1. Autistic persons who feel out of place in our society.
2. Parents who often wonder what their autistic child is thinking.
3. Parents who needs hope that their autistic child can improve.
4. Parents wondering if their autistic child would ever find employment or get married.
5. Employers who need to see the strengths of autistic people so that there'd be more job options.
6. Teachers wishing to know how to help autistic students reach their fullest potential.
7. Peers who wish to befriend an autistic person.
8. Bullies who need to enter the mind of an autistic person so they understand enough not to make life difficult for the socially awkward.
9. The general public who needs to stop expecting autistic persons to behave exactly like a neurotypical.
10. People curious about how autism affects lives in 15 different countries.
Was one of two panelists for a parent sharing on special needs organised by the Scripture Union today. The audience, about 50, comprised mainly Sunday School teachers from various churches. Meaningful questions were asked, including:
"How can Sunday Schools welcome children with autism?"
My take:
1. Establish open communication with the caregivers. Because it's often the case that the child cannot report to the parents, Sunday School teachers can keep the parents informed of what was covered during that day's lesson, so that the parent can support by reinforcing the lessons. In communicating with the parents, it is good to highlight the child's strength and what the child did well that day. These snippets are precious encouragement to often flagging parents.
2. Find an area to let the child serve in church. It can be as simple as stacking chairs. Being able to help makes the child feel useful, and proud of how he or she can contribute.
3. Do not focus merely on teacher-child relationship. For the church to become truly inclusive, we need to consider how we can help the peers understand and love the child. A good way is to set up a rotational buddy system for different classmates to guide and help the child. This way, peers get an opportunity to know the child at a deeper level.
4. Consider setting aside a quiet corner for the autistic child to calm down during a meltdown. The ideal setting is quiet and not too bright. If a separate room is not possible, a partitioned corner with a bean bag can be helpful.
5. Pray for love. Because even with the best guidelines or procedures, it's there's no love, we're just an empty gong. So pray for love, and then wisdom to help the child.
Ethel asked me why I always speak to Calder in high-pitch voice, and talk to her in low pitch. Perhaps because Calder will always be the baby in the house, because of his simple ways. I noticed how differently I woke them this morning...
To Ethel (5.15am): 5.15, Mei.
To Calder (6.30am): Good morning, Calder! You had a good sleep last night? What must Calder do now?
