I Want to Stay Here
Me: “N! Guess what we are doing on Sunday? We are going to a farm to have a picnic and you can ride a horse!”
N: “I don’t want to go”.
Me: “But they have a trampoline!”
N: “I don’t want to go to the farm”
Me: “You can feed the horses and brush them”
N: “I want to stay here”
This conversation continued on and off for about 2 days. Then (safe in the dark of bedtime cuddles) he said to me “I don’t want to go far away” and the penny dropped. Anxiety. Break in routine. The unfamiliar, the unknown, the unpredictable. I think I have mentioned previously that N has never responded well to changes in routine. I cannot ever remember a time in the last 5 years that he has shown any tendencies towards flexibility or adaptability. To be fair, in the nature – nurture debate, he definitely didn’t win the genetic lottery of “going with the flow”.
The conundrum that I find myself faced with, is whether to accept and embrace this adherence to routine and structure or whether to try encourage and introduce a greater level of flexibility. Given my own personality, I am not sure I would know how to do the latter. More important, however, is the fact that the predictability of the routine makes N feel safe and secure and it gives him a sense of control. I suppose, as with most scenarios in life, there is a happy medium. N, though, is not one for middle roads.
This adherence to repetitive and predictable routines extends into most times and aspects of our day. There are many jokes and memes around about how ‘easy’ it is to put kids to bed – you just have to set the room to an exact temperature and lighting level, read 3.5 books, sing 7 songs etc. In our case, this is absolutely not a joke. I prepare N’s bedroom to certain exact specifications every night before bedtime (the light, the fan, the pillows), including using the same cup and bowl for his water and snack every single night. We also follow the same routine with precision from when he has his supper to when he gets into bed. It may look (from the outside) as if we are doing this for ourselves, for our own peace and convenience. There may be an element of truth to that. However, as with everything else, N’s happiness and sense of calm and security are at the centre of everything that we do.
During our first year of therapies, I remember one or more of the therapists talking to me about how predictability and repetition is important for children with apraxia and about how his preference for stable routines was a coping mechanism for him as much as it was for us. I suppose in those early days there was so little that N could express (and therefore control), that routine gave him what he needed. He couldn’t ask what was happening or what was coming next and so the routine answered all the questions he could not verbalise.
N’s dependence on me for security and, in those first years when he could not speak, for meeting every need has led to the fact that we have not been away without him for even a night. In 2018, right in the middle of dealing with his diagnosis, his therapies and his pending change in school, I needed to go away for one night. Probably as a result of everything that was going on at the time, N had been refusing to go to sleep on his own for a few months. This meant that I had to sit with him in the armchair in his room until he fell asleep, transfer him to his cot without waking him up and then make it out the room (opening and closing door) also without waking him up. This took between 2-3 hours every night. I was emotionally overwhelmed, drained and just completely exhausted. For many years, I had been involved in organising a biannual professional conference. The conference was due to take place in August 2018. I had received all the notifications and just had not registered, feeling like I couldn’t possibly be away from N at that time. It was 2-day conference a fair distance from home and, if I attended, I would need to stay overnight. Eventually a friend and colleague asked me why I had not registered and I realised that I had to attend. So, I bit the bullet, registered and booked my hotel.
I then began planning for the 2 days and 1 night that I would not be at home. I started by writing out N’s schedule in great detail, including meals; medications; clothes; his bath-time routine, bedtime routine and everything in between. After that, I also put his clothes into piles with labels (to go with the schedule) and I organised for there to be someone to assist my husband with N the whole time. As I had always been the one to take N to school, I decided we needed to do a ‘practice run’ of my husband taking him (while I followed behind and waited in the car in case of emergency). Believe me, I know how crazy this all sounds, but after finally resettling him into school after a 2 month “break”, I wasn’t taking any chances. We had just managed to phase out the nanny going with him to school. I kept asking myself why I was doing all this just to go to a conference and be away for one night. The morning the conference began, I got dressed in a really nice new outfit and left the house by 6:15a.m. so as to be on time and also to not have to say goodbye to N and risk a separation meltdown from him.
The thing with routine is that it both comforts us and confines us. After about half an hour at the conference, I realised that I had not felt that way since N was born. Being with my colleagues (and friends), drinking coffee (hot coffee!) and talking about the speakers and presentations ahead reawakened a part of myself that I had sorely neglected (even though I had been back at work since he was 3 months old). I suddenly felt like a new version of my old self. My brain switched gears and I engaged in academic discussions and debates. Yes, I checked my phone regularly; kept it fully charged and called home periodically. Only having to take care of myself was bizarre and exciting and I made the most of the opportunity. I even declined a dinner invitation just to be able to enjoy the hotel room – the solitude and the ‘free time’ was something long forgotten and much anticipated. Despite all my worries, N was absolutely fine. He went to school, he went to bed, he went to school again. It had been ok without me. He had been ok without me. As I write this article, I am planning a night away and I know that (thankfully and gratefully) I will not have to put nearly as much in place now as I had to then, which speaks volumes about the progress we have all made in the last 3 years.
So, did we go to the farm? Yes. Did N have a wonderful time, ride the pony and have to be bribed back into the car to leave? Also yes.