For people with ASD, the smallest change in routine or expectations can have the most enormous impact. Often, it’s quite obvious that something’s the matter, but you just don’t know what it is. Your child’s words are inadequate and their body language is only giving an outline. You need details the manage the meltdown, the obstinance, the change in behaviour. It can be hard to manage. What do you do? It’s like wandering in the fog, not knowing what you’ll bump into next.
This happened in Wombat world last week.
The routine
Dancing Wombat goes to a weekly cooking class. She loves it. Every week, she takes the same apron, which I have to tie up before she leaves. Every week, it goes into the wash, whether or not it’s dirty. And every week, she comes back, enthused by being empowered to cook and serve dinner for herself and a group of other young people.
Nicole runs this cooking class. It’s just for special needs kids. Nicole also runs a social group Dancing Wombat attends. She also used to teach at Dancing wombat’s school. They know each other well.
The venue is familiar. The other students are familiar. And the routine is familiar. However, last week before we left for the class, something really threw my daughter. It caused her to behave in a way that I’ve never seen before.
It was worrying, because someone who didn’t know her as well might not have been able to deal with it as effectively as Nicole did. It was also worrying because Dancing Wombat didn’t have effective strategies to deal with whatever was troubling her. And as I project into the future… Well, there are enough bad news stories about abuse of special needs adults without me letting my imagination run wild when things don’t work.
The apron
It all began with the apron. Well, it had probably begun before then, but this was the first sign that something was wrong.
The apron is a very generous fit. It has been worn many times before. Yet, for some reason, after I’d tied it up that afternoon, she started complaining about it.
“It doesn’t fit.”
“Yes it does – there’s heaps of room!”
“It’s itchy.”
“What? It’s fine. Look – there’s nothing there to itch you.” (She was also wearing the same clothes as the previous week, so I knew there were no new, underlying sensory issues from her clothes.)
“I don’t want to wear it.”
“Well, you have to. You need to wear an apron while you’re cooking.”
“I can get another one at Nicole’s.”
At this point, I capitulated. We were going to be late. “I don’t think Nicole has spares. I’ll take this one with me, in case.”
Persistent. “She does have other ones.”
Whatever. Let’s just go, please, I thought. It was Thursday night. My husband had been away since Sunday night, and even though I was one Wombat down (Train Wombat being away on a school trip), I was exhausted. I didn’t have many reserves for dealing with this.
Another plea for help.
“My socks! My socks! They keep falling down!”
Oh no. Now what? I stopped to look. Dancing Wombat was wearing leggings, and it was hard for her to pull up her socks, and then pull her leggings back down without pushing the socks down again. But this was not a new scenario? She had worn this combination of leggings and socks many times before. Why was there a problem now?
“Okay,” I told her. “Fine. Go and change them. But be quick!”
Finally, we were on our way.
Before class
We arrived early, which gave me time to try the apron again. No luck. Nicole came out and I explained the issues. She was happy for me to leave Dancing Wombat and the apron with her. That was good. It’s so important for my daughter to be guided by others and learn to follow their instructions. Sometimes she refuses all help unless it comes from me. This is not helpful for either of us.
As I left, Dancing Wombat started complaining. She took a different approach.
“My legs hurt.”
Oh no. I bet it didn’t. This is a tactic she uses from time to time to avoid a situation she doesn’t like. The problem is, it’s crying “wolf”. I worry that perhaps one day, I won’t believe her when she really does need help. But she didn’t now. I just wasn’t giving her the attention she wanted. Not letting her have her own way. So now it was “My legs hurt”.
“Well, you were fine when we left home 20 minutes ago. I’m sure you’ll be fine.”
Nicole nodded to me. Time to go.
“But my legs hurt. And my stomach hurts.”
Hmm. She’s nothing if not persistent. “You’ll be fine, sweetheart. Now, I need to get back to the boys.”
“But my…”
Her voice trailed away as I walked briskly out of the door towards the car. But then I heard footsteps coming after me – her footsteps. What? She’d actually followed me out instead of going into the main room to join her class. I didn’t know what to do.
I quickly ducked around the corner of the building, thinking that if she couldn’t see me, perhaps she’d turn around and go back inside. Surely? But she didn’t. She stood in the middle of the path, calling for me, her hand in her hair, twirling it around – one of her current habits.
Nicole called for her to come back, but she didn’t respond. Should I bring her back? Should I pretend that I wasn’t there and hope she eventually went back herself? Should I rely on the teacher to get her? After all, if I brought her back, then Dancing Wombat would be following my directions – not her teacher’s. And yet, would Nicole think I was being neglectful if I didn’t bring her back myself? What a dilemma.
Dealing with the immediate situation
Other students were arriving. The class was due to start. My daughter was still not inside, not responding to Nicole’s calls to come back, but luckily not going any further away.
Eventually, Nicole returned, and, taking Dancing Wombat gently but firmly by the arm, walked her back inside. As they went, I could hear her explaining that she had to leave her class to get Dancing Wombat, and that was not a good thing. She mustn’t leave the building. Oh dear – perhaps I should have brought her back in.
The aftermath
After the lesson, I spoke to Nicole. She had seen me watching Dancing Wombat and was fine about being the one to get her. She had given my girl a stern talk about appropriate behaviour, and then said that Dancing Wombat was fine for the rest of the lesson. Well, that was a relief. But I still didn’t know what had triggered my daughter’s responses.
Actually, on reflection, maybe I did. The one thing that was different about tonight was that I needed to pick her up early and take her to a school information night for Littlest Wombat’s transition to Grade 5. Was this behaviour the outworkings of anxiety about coming to this, and leaving cooking early?
That’s the hard thing, sometimes. If you know what is triggering a certain behaviour, you’re often in a better position to deal with it. But I just couldn’t identify anything that was different. Even my husband being away was not unusual.
But in the end, you just have to deal with the situation as it stands. Maybe it doesn’t matter if you can’t always tell what the matter is. If you don’t have the information to get to the root cause of the upset, you just have to deal with it as best you can.
I think it’s important that as parents, and especially as parents of special needs kids, we need to acknowledge to ourselves that we won’t handle every situation perfectly. We won’t always keep our cool for as long as we’d like. We won’t always think of that creative solution to the current problem. But we do need to keep trying. Because when our kids can’t do it for themselves, it’s up to us and others around them to help pull them through.
At least, that’s what I think. What about you?
Until next time, Happy Wombatting.
(Image: Eric Chen ‘Mirror Minding’ 2005)
