This morning, as usual, we had to tread carefully and take our time navigating through the process of getting our youngest up and dressed for school. She works to her own timetable, her own plan. Some of that is very predictable, as parents we have gotten used to the routine we have to allow time for. The routines about the order of the morning, and the places different things happen in and who with.
Daddy wakes her and takes her down. Breakfast is chosen in the kitchen but eaten on the sofa. Mummy gets clothes. Mummy helps her get dressed. Mummy and Daddy (and sometimes big brother and sister) take turns to help with tooth brushing. No one even contemplates hair brushing on a school day. Mummy walks her to school.
What this summary doesn’t show is the inner workings of the plan which some days I don’t even think she has any inkling of until we find ourselves at an impasse. Today for example nothing that was offered quite matched the breakfast she had in mind as she woke up—of course none of us know what was in her mind, including herself!—and it takes a very long time and a lot of emotional energy for her and for Daddy to go through all the options, weighing each up against an unknown but inflexible list of criteria to find out if they are right for breakfast. Today we had to try on two pairs of leggings before we found the right pair for today and three pairs of socks (that’s 5 emotional battles about clothes) and more to come.
No eye contact, aggressive defensive behaviour, and sensory overload are time and energy consuming. This unknown inflexible list of criteria to find out if something is right for the day involves textures, colours, smells, timings, anxiety levels, tiredness, exactly where things are placed before and after use, taste, pattern, sounds, phrasing, tone, context … the list goes on, a slippery sliding scale measuring whether something will be acceptable or safe or right today.
The inflexibility of autism, sensory processing differences, pathological demand avoidance, and anxiety is quite something.
It’s not, for us, the rigid following of a set routine, though that forms a part of it. It’s like an ever changing maze of emotion and reaction meaning you hit dead ends constantly, and they are often surprising, not in the same place as they were last time.
It’s a kind of inflexibility that means I ironically need to develop the flexibility and powers of Elastagirl to be able to support and parent.
And that irony about my child’s inflexibility is incredibly difficult to share with people in a way they can understand. “They managed it last time,” “she’s been on trips before,” “but she always eats cheese”… all leave a parent feeling alone and very stretched trying to meet the needs of their child and somehow fend off the expectations of others about their parenting and their child’s reactions.
I am so thankful for a Father who understands completely, whose acceptance and love is boundless and whose strength can hold it all.
A Father who says to us again and again, “Do not be afraid, I am with you!” There are many pictures in the Bible that show us God as a parent who just like us has to meet their child where they are, has to be flexible and creative in the ways they communicate with their child, has to be patient over and over and over again. He knows exactly what it is to build trust with those whose anxieties are overwhelming in the face of change or challenge. And he knows what it takes to keep walking alongside those whose fears don’t let them walk easily into what’s new. He really knows. And he says to us again, “Do not be afraid, I am with you!” Right there when I need wisdom. Right alongside when I am running low on energy and strength. Standing with me when others misunderstand or don’t see. “Do not be afraid, I am with you!”