You've got your routine down pat. Everything is in place, therapy, school, homework, activities, work, everything hanging on by a thread, but somehow you are pulling it all off. People say things like "I don't know how you do it". You usually reply with something along the lines of, it's amazing what you can do when you don't have a choice.
So, what happens when you, their primary carer, who prepares for their additional needs with a robotic precision, with your schedules and coping mechanisms, with your regulation experience and patience, what happens when you get sick?
Recently I was pulled under the weather with a series of infections, nothing serious in the way of long-term diseases, but more than I could handle alone. I wasn't able to get up or drive a car, even taking a breath proved to be challenging experience. My children, set in their routines were reluctant to understand the changes that needed to occur. My limited support system became strained and the pressure to regain my strength in the face of such a difficult physical set-back only made recovery harder. The guilt, though self-inflicted, was to blame.
My husband took on as much as he could and a beautiful friend (you might know her, Erin? The Sensory Studio Owner & Founder?) made the call that dreams are made of. That angelic voice that says, let me know what I can do, and means it. In the end, I made my come-back just in time to keep most things on track, however, there are a few lessons I learned in those few days that I want to share with you anyway.
It's ok. If they miss one or two sessions, it is not the end of the world. If you end up ordering pizza one night and kebabs the next just to keep the house fed, life will go on. Despite the pressure we place on yourselves to get it all right, the universe won't punish you this one time, if you don't.
Say, yes! Somehow as parents and carers we are pre-programmed to say, thank you but it's ok, leaving ourselves to struggle onward alone. If you have help from a trusted source, just say yes. it isn't a slight on your record as their number on provider, it just means you are lucky enough to have someone behind you to share the load.
Order it. If you can have it ordered, or delivered or collected, make it happen. One of the benefits of living in the complicated times of 2019 is the ability to have technology do the work for you. Order those school lunches, pre-order that dinner to arrive for 6:30pm. Get the shopping and your dog food brought to your door. Even if the cost is higher, your recovery will thank you for not pushing yourself to get it all done alone.
Forgive yourself. Unfortunately, invincibility isn't something that you are granted with your NDIS plan. There will be times when you fall victim to those human tendencies such as getting sick. We are usually our own worst enemy when it comes to placing blame, however it will rarely help you get better. If you can take the time to rest instead of beating yourself up, you are far more likely to improve quicker.
This to shall pass. For me, all the feelings ramp up. All of the things I do for myself to keep my mind and body on track, away from the clutches of racing thoughts and anxiety-ridden behaviours, are mostly unachievable while unwell. The battle becomes much more about mind-over-matter instead of the usually distraction techniques I am used to. I need to constantly remind myself that this will pass and everything will, in fact, be okay. No matter how much it feels as though it won't.