The part and the whole of our #autism family

So, things were up in the air for our family for about 6 weeks or so regarding this potential huge change. There was waiting. Exploring. Investigating options. Weighing benefits. Cognitive testing. And my mind racing, worrying, analysing, as we gradually came to the crunch of making the decision about Ash's schooling.

On the one hand, Ash's emotions were telling me that he needed something more than what he currently has. Whether that is about support, therapies or simply insight, we needed to think about what was best for him. So, it was recommended that we consider this particular school - a limited time offer, as he is at the upper age limit of enrolment already, being in year 4 this year.

Ash and I did a school tour, and he did two trial mornings in the classroom there. He liked it. He got along well with the other kids in the class. They liked him. The school suggested he might begin full time in just a few weeks. We had one full day trial left to complete before making the final decision.

Then Cedar got chicken pox (mildly, as he is immunised), and I let them know that Ash had been exposed. This postponed the full day trial for a couple of weeks. And in the meantime, my brain kept ticking over a million miles a minute. I had a meeting with the principal at the kids' current school. I had conversations with another school parent who has a great understanding of Autism spectrum kids. I had a conversation with my daughter's psychologist. I had a conversation with Ash's psychologist. I did research. Ben and I discussed the pros and cons, the costs and benefits - both literally, and to each of us, as well as to Ash (primarily, loss of his aide support). I wrote lists. Talked it out, juggled my thoughts, watched my kids.

And then I sat in a cafe in a shopping centre, with a coffee next to me, and wrote two emails to the specialist school - one to the principal and one to the teacher. Ash would not be changing schools. There was no need to complete the trial days. Their information has been invaluable (and I've since had another conversation with them getting more tips and advice). But our family is made up of more than one 9 year old boy. He is not even the only one on the Autism Spectrum. And, as completely as I love him and want to help him, we are one whole family unit.

You see, I'd been on a rollercoaster of decision making, and things were not crystal clear or self-evident as to what would be the best choice for Ash. But it was like I had blinkers on. I was looking at Ash as an individual, and what might be ideal for him on his own. I knew it would have a high personal cost to me if he changed schools, but I felt that I, as his mother, could sacrifice 15 months of my life for the benefit of my beautiful son.

And then I stopped. Ash is not an only child. We are not a family unit of 2 or 3. There are five of us here. It's not *just* about him, and it's not *just* about me. Sienna is 11.5 years old, a tween girl with Aspergers and ADHD, going into high school next year. How would it affect her if the pressure was on each morning to get ready early, quickly, quickly, or Ash will be late for his school a half hour drive away? How would it affect her if I am unavailable for 2 hours per day? If I feel too frustrated and tired by the juggling act to be a listening ear? As well as practical details, will I be able to take her to her high school transition program, an integration program for additional needs, if I also have to drive Ash in the opposite direction?

Cedar is 5 years old. He'll be 6 in five weeks, and he is in his first year of primary school. Next year he will be in year 1, and if Ash changed schools Cedar would be rushed out of the car, expected to walk in to school on his own, 15 minutes early every day. Is this really a good time for my energies to be so devoted to one child? With no guarantees? As well as all that, while weighing up these decisions our 1 year old dog Sparrow got very sick. She had a sudden and extreme bacterial infection, and I spent a week back and forth to the vet, getting meds into her and sitting next to her almost constantly.

I realised there was also the literal cost to our entire family - a sudden vet bill would be impossible to pay if I tied up all our available family income in private school fees for one child. And with my time commitment to driving 2 hours a day, I would hardly be able to earn any income to help pay for it. Even for Ash's sake, what about the school fulfilled his needs? Would it be worth it? What would happen at the end of 5 terms when he had to return to mainstream school, but no longer had aide support? And would this help when 5 terms later he had to transition again - a third time - to high school?

I know this seems like a big old brain dump, and it is - (epic, in fact, I'm impressed if anyone has read this far!) but it is still only a fraction of the thought rollercoaster I was riding for those 6 weeks. I just wanted to record the conflict, the unknown and unseen by most, that I know so many parents and families go through when weighing up decisions they need to make for their children. Professionals might tell you they think something will benefit your child, and our instinct is to jump in with both feet - yes, of course, let's do that! But even the loveliest professionals are not part of YOUR family, and they don't know the whole story of your everyday life. No one is as well equipped to make these decisions as you are. 

And there might be parts of the decisions you have to make over the years that are about you. Self-care, some call it, or your needs as an individual and not just a mother (or father). We might be reluctant to add these to the scales, on one side or the other, but really, we must. As their primary carers, our wellbeing - or not - at the end of the day is likely to have a stronger effect on our kids than we know. Your happiness has weight. You matter too.

Even though we decided not to make this big change, for Ash to move schools, it was not a decision not to change. We decided to take what we have learnt from the specialist school, take the conversations I had with school representatives and other professionals, and make smaller changes.

Our action plan now is:
  • Weekly 'excursions' to reward (and incentivize) Ash for attending school every day of the week, something that is hard for him
  • The development of a Sensory room at school and a strategy for including more sensory input into his day.
And that's it. Of course, each of these two things means budgeting, appointments for planning and meetings with school, among other things. But they are two key outcomes of this experience. They will both benefit others as well as Ash, and we are still showing him that what is best for him, matters to us.

It's all a learning curve, after all.

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