I think one of the hardest things for an outsider looking in on a sensory family is how inconsistent the sensory side may appear to be. There are days when the kids will be totally fine doing an activity and other days when they just crumble. I think sometimes this is the reason why outsiders doubt us sensory parents when we say the kids have SPD. They wonder why last week a certain activity went so well and this week it did not. Sometimes they quietly (and sometimes not so quietly) think it is more down to parenting (and believe me I am not saying I have this parenting thing down because parenting 2 sensory kids is full of constant challenges of which I don’t get everything right).
But you have to think of all those variables that happen before the event and are happening during the event in question. Did the sensory kid arrive after already having a busy overwhelming morning or did they arrive having had a quiet morning, is there lots of extra outside stimulation happening that you can filter out (maybe you don’t notice the wind, the light drizzle or the sirens and extra noise, maybe this week there is more background activity going on which you have not picked up on). It is so hard to know what may have happened differently this time compared to last time, it could be one single thing or it could a whole bunch of things.
We recently went to a party where they had an entertainer and to be honest I did not think it would work with my youngest but it did. The entertainer was noisy, the kids where jumping, shouting, singing bumping into each other (which is a huge struggle for my youngest as he really battles with touch) and there was constant change (again transition is something he really battles with. He normally takes a bit longer to move from doing one activity to another. He is focusing so hard on what he is trying to do that he struggles when he has to suddenly stop and change). But for some reason it worked and he LOVED it. I was shocked. Honestly SHOCKED. I spent the whole time standing on the sidelines just waiting for his face to start crumbling because it was getting too much. I did not chat to anyone or get a drink I stood on high alert ready to swoop him out to try to avoid his sensory struggles upsetting the party. But it never happened. He did all the activities, he joined in, was pushed around and managed. At one stage I saw it was getting a bit much and he started struggling but his older sister was in the group and he went up to her and reached out and held her hand and said something and for 5 minutes while he calmed down she held his hand and kept him close by. Towards the end of the party (he lasted 2 hours) I could tell he was over his limit so we made a very quick exit.
But here is the thing if we tried to recreate that afternoon again it might not work because there are so many variables that could change. We were one of the first ones to arrive at the party, the mom of the party girl had taken time to explain to him what was going to happen, before the entertainer started we had been able to have a quiet swing in a calming room. Would it have all worked out like it did if we had arrived later or if he had not had the chance to speak to the mom and find out the planned order of activities? Probably not. What if before the party we had done something overwhelming and he had arrived already near his sensory threshold – it would probably not have worked.
As a parent of two sensory kids I am aware of a lot of the triggers, I know for my son touch is extremely hard for him to process and for my daughter noise and visual input overwhelms her. For the most part I know what to look out for but I don’t always see the clues and I don’t always know what has happened. Some days they will surprise me and cope really well in difficult situations and other days something which we have done successfully multiple times will be a total right-off. There are so many variables that may impact how well an activity goes and even as a parent of two sensory kids I don’t always know what is causing the problem. So I do understand how for an outsider looking in on us that it might seem strange how they coped one time and did not cope the next. I get that. I do. But please give me the benefit of the doubt and acknowledge that no two events or two activities even happen exactly the same way and that every time we try something there could be changes that have happened that you and I are not always aware off.
The sensory journey we are on feels like a never-ending rollercoaster ride and I am never sure if the next bit it going to be a straight section or a massive upside down loop. I can try to guess what is coming next but the truth is I did not build this rollercoaster course I am just trying my best to get the kids through it. So yes some days it will look like we are managing just fine and other days when you did not notice the drizzle that triggers my daughter or extra noise caused by the road works you may wonder why my daughter is stimming like crazy to calm herself down before she starts her 2 hour dance class. Just accept that nothing ever happens exactly the same way week after week. And some weeks a sensory child may find doing the exact same activity more challenging than before because all the outside variables that affect them have been different. It is not down to the kids being difficult or me not setting boundaries or whatever you may want to call it. It is just part of a sensory kids world where small changes in things that we often don’t even realize have changed can have a huge impact of their sensory world.
(And if I ever disappear every quickly from an event or activity I am not being rude it is probably me realizing we have pushed the boundaries and need to exit at lightning speed).