This afternoon we're heading up North to catch up with my husband's side of the family for a week. Travel unnerves many a parent. But traveling with a child on The Spectrum is like playing with fire. It cannot be helped; all the hard work that is put into the week around routines is unraveled and as the routine unravels; so does the child. I am already on tender-hooks and we aren't boarding the plane for another three and a half hours!
We've traveled a bit with Amy as our family are spread throughout New Zealand and Australia. We can stay with friends or family for short bursts but it seems to be best for everyone if we have our own accomodation for the long-term. We've mixed things up a bit this trip. For the first three nights we're staying with friends and family - two situations in which there are two children under the age of three. Both families have been sent a link to this blog. Like a true Mum of a child on The Spectrum I have packed sticker charts, stamps, and social stories in the hope of keeping our routine going as much as possible in the midst of staying with other families. The next four nights we have our own motel which will be great. Amy has nine cousins all up so it will be good to break up our visits with them all.
I guess something I've been thinking about lately is how one almost needs to ASD-proof a home just like you would if there was a baby coming into your home. If there is something that is obviously a target for ASD confrontation then it can be removed or the children can be given house rules for play that will work for everyone.
We went to one of Amy's friends birthday parties in the weekend. As soon as I saw the Wendy House in the corner and did a head count of four kids my stomach churned. Wendy Houses seem to be an invitation for space invasion on my daughter's part. Every time she enters one of those be they at Chipmunks or someone elses home, there is often an "incident". This usually involves the other child - if there are two - coming out in tears. Quite simply Amy's air bubble has been punctured in these situations and so she pushes, hits or kicks to get the other child out of her space. So on Saturday when all four kids wanted to pile into the Wendy House I made some rules with all the kids: "You can only sit in here all at once if you all sit still, otherwise you're all coming out!" I find as a Mum of an ASD child that I invariably end up on crowd control. Where some Mums can just leave their kids to mix happily wherever and whenever; this ASD Mum is pretty much always in the same room (unless things seem to be very settled on the play front).
One of the kids at the party was a little older than Amy and started hitting her with a cushion - in a somewhat playful manner. Of course most of the parents present at the party didn't see this and turned around in time to see our blonde-headed girl in her princess party frock lashing into this boy. So play-fighting is another cringe factor for me as an ASD Mum. A few weeks ago an older boy was throwing balls on to other children's heads at a swimming pool (yes, really). Sure enough, twenty minutes later Amy was doing the same and of course got carried away. She doesn't understand play-fighting and if she witnesses it she will end up hurting other children. It's that simple.
Toileting will no doubt take a back seat on our trip away this week. We struggle to get Amy on the toilet at home so we cannot have high expectations around her using a toilet during what will be an unsettling time for her. When she is toileting "well" she goes to the loo when prompted by us three times a day. When she is anxious she has no interest in going on the toilet and will hold on for hours. This is all to do with wees - poos are done any time, any place in her undies. If we can preempt a poo a nappy will be put on but there have been many surprises the last few weeks. Amy simply doesn't seem to care about soiling her pants. Her peers are already commenting about her accidents/nappy use which breaks my heart. Older children ask: Why is she still in nappies? I reply she's still learning how to use the toilet. Amy is oblivious to the outside interest around her toileting - which is a good and a bad thing. After our trip we will be introducing yet some more social stories around pooing on the loo.
So although I am looking forward to seeing friends and family up North I know it is going to be hard work to keep things rolling in the background so that Amy does do well and gets her needs met. I have told all those up North to not be offended if we have to leave social gatherings early - as there is going to be a bit of socialising within the week.
Every trip we go on I learn a little more about traveling with an ASD child. Our last trip in January to Auckland (to see my side of the family) was a real stretch for Amy. A week was way to long for her to share accomodation with two children under six. She was desperately fighting for her own space a lot of the time. It was hard, hard work. Yet I didn't prepare my family in any way. I am hoping by offering some insight into Amy's ASD via this blog that family and friends this trip will have some understanding. That's all I can hope for.
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