It is rare in daily life that we take a break. Of course, we take vacations, and days off, and spend time away from work and doing the things that we want, but it is nearly impossible to take a break from the world of autism. There are always assessments, paperwork, appointments, report cards, meetings, behaviour plans, and scheduling (oh the scheduling) that have to take place in order for our life to run the way it needs to. So, even though we take vacations, those days are planned and Autism is always along for the ride.
Last year, through a stroke of luck I managed to get tickets to see Hamilton on Broadway (I could start a whole other blog about my love of musicals and theatre, but alas, not the subject of this post). It was almost a year in advance when I purchased them, but J and I decided that this would be a good opportunity to see if we could take a short trip (4 days) with just the two of us.
We saved our pennies for this – every paycheck $75 was put in an NYC fund and I am happy to say that money paid for our hotel, flight, and spending money while we were away. As soon as I bought the tickets I felt guilty – though I knew that I could sell them on the secondary market if need be. Putting Monkey in therapy is costing us close to $2800 a month and we are using the equity in our home to pay for it. Booking a vacation seemed selfish and extravagant and there were times when I was going to cancel the whole thing. But, we budgeted, and we both really wanted to take this trip (our first real vacation in 3 years).
We went last weekend and I can tell you that it was worth every penny and than some. J and I spent quality time together – and we even had a day where we could be completely spontaneous, which is a luxury. Monkey is the centre of our world (and always will be), but we needed a break from everything – from work, school, paperwork….and autism. We spent some time at the Museum of Natural History and I thought of Monkey every time I looked at their amazing exhibits with ocean life, animals, or dinosaurs – but we were able to enjoy those things without having to have a backup plan in place due to a meltdown or sensory overload.
We spent time together just wondering through bookstores, having a leisurely coffee, or a fancy dinner without worry of having to be back at a certain time or being conscious of timings. It was liberating. We tried as best we could to keep autism out of our conversations and I would say we did a pretty good job overall. Of course, we missed our Monkey as well and on the flight home we were both looking forward to giving her a big bear hug.
I was nervous about leaving, as Monkey is pretty set in routines so having someone else care for her while we were gone was making me nervous. The key was to keep her busy. My wonderful mother-in-law and sister-in-law took her swimming, took her for ice cream, and thoroughly spoiled her with favourite foods and lots of fun. She did incredibly well and it gave us the peace of mind to know it may be something we can do every so often.
We came home refreshed and happy to have done something just for ourselves, and now I don’t feel the slightest bit guilty about it. I think we all needed a break – a break from routines, from therapy, and from scheduling. It was only 4 days, but it was enough to recharge our batteries and move forward.
To parents walking a similar journey – take time for yourselves because you can’t pour from an empty cup. Heck, to all parents of small children – even a weekend away by yourselves will likely do wonders. Make it a priority if you can.
We received the wonderful news that Monkey’s name has come up on the wait list and we will be receiving funding for her therapy, and increasing her hours (from 15 hours to 24 hours a week). This is a relief and we know that she is ready for the increased therapy because we put in all this work over the last year. We are currently putting together her behaviour plan to be submitted – but it a relief to know that we won’t be going further into debt and can start paying off what we borrowed. Heck – maybe this means we can add a little more to that vacation fund.