Borderline Days are hard days. It's autism in full swing. It's about sensory overload, anxiety and restlessness. It's about our daughter not being comfortable in her our own skin and constantly wiggling and finding ways to ease her discomfort yet invariably nothing works. It's simply something that has to be ridden out.
We've learnt over the years that these days pass. Sometimes we have Borderline Weeks - and even Borderline Months. It's as though Amy's autism resets itself and we have to have two steps backwards in order to have another step forward.
Although many aspects of autism are triggered or at least amplified externally eg: such as in a noisy classroom, I strongly believe that a lot of autistic behaviour (at least with our daughter - as autism is different in every child), comes from within. Amy went on a playdate today in a borderline state and it didn't go so well. The outcome wasn't a surprise despite her being left with a family that understands the many faces of her autism. Most of the time Amy spends time with this family, there aren't issues. But on a Borderline Day it is a given that social interactions are difficult for Amy - even with those she knows really well. Typically I try to discourage playdates on borderline days. But sometimes Amy just wants to go!
It is almost as though when these Borderline Days hit, Amy changes somehow in a biological way. I can tell just by looking at her when she is in a borderline state - the colour is gone from her cheeks and it's almost as if she appears to be sick. In fact a headache will often be part of the package.
Borderline Days typically hit towards the end of the week. Luckily I have a job in which I usually work Monday - Wednesday so I'm available if Amy needs an afternoon or a day off school. Often I can preempt her behaviour and will not send her to school if she's obviously struggling.
However I did send her to school last Thursday - the first day back after the school holidays - knowing full well that Amy was in a borderline state. Her classroom teacher knows he can call me anytime and I will pick her up - and I do get the call from time to time to come and get her. But I didn't get a call and turned up at the end of the day to find out she'd had her first ever meltdown at school.
I partly felt bad about this - because as a parent - and especially as a parent of a child with autism - it is my job to look out for her. Yet at the same time I thought - as did her teacher - that it was good to see a meltdown in action at school as until now, her teacher (and other staff at her school) have only heard my version of a meltdown. I think the experience only reinforced to the teacher how crucial sensory diets and all the other things we put in place to manage Amy's autism at school are.
Amy has been at school for a year and a half and it has taken the school a while to get to know her as her version of autism (particularly the girl variety) is quite different to the autism they have seen in other students. I very much felt like the overprotective and anxious mother for quite some time as I fought to have several things put in place for Amy so school would not only be possible for her - but also positive.
Luckily since an RTLB (Resource Teacher: Learning and Behaviour) came on board this year who has a lot of respect and authority in the school; I am no longer fighting solo for Amy. Amy now has a teachers aide Monday - Friday for half an hour a day for one-on-one reading and writing. There is also an afternoon programme for kids who need a break from school. There are five children all up who attend including Amy and four out of the five appear to be autistic. This programme used to be twice a week and is now three times a week and Amy loves it.
Yet despite the one-on-one teaching time and the breaks three afternoons a week, attending school fulltime is still a big stretch for Amy. I always say that autism seems to come in cycles for us and so when we have a series of Borderline Days, we have to pull back and accept that in these times not a lot of homework will be done and some school will probably be missed. It is not worth it for anyone involved to push too much.
For Amy it's as though she comes with a certain amount of energy - kind of like those with chronic fatigue and sometimes she has even less to give out to the world than other times.
Borderline Days are exhausting for all of us. We've just had a Borderline Weekend and we are all shattered. But we've been through enough cycles to know these borderline episodes do pass and an energised, focused and chatty child will come out of the autism fog eventually.
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