Sensory Processing Disorder is a funny beast… #whatyoudontsee

Sensory processing disorder is a funny old beast. It can seem calm and relatively easy to manage and you think you have FINALLY got a handle on it, and then out of the blue you hit a rough patch and everything you thought you knew and had figured out just seems to evaporate and you feel like you have taken 3 steps forward and 5 back.

You see Sensory processing disorder can’t be cured. It can be managed, it can be learned to live with. It can bring challenges but it also brings with it a vast rainbow of parenting skills you didn’t imagine you would need and you parent in ways that others may not, or may not understand.

We have had a rough patch.

Sleep has been bad, very bad. Waking two to three times a night, with night terrors, going to bed has been awful. The early wake ups have meant we are drinking more coffee than I am sure is good for us. We should be used to lack of sleep, it’s not a stranger to us, but when it’s a concentrated hard time, it hits us harder. We battle on. We don’t have the luxury of anything otherwise. He’s our kid and we deal with the lack of sleep and the tiredness because that’s what we, his parents do.

When he’s tired he is more prone to sensory meltdowns and not being able to cope with day to day life. This morning I had to peel him off me, because he didn’t want to go to school because he hadn’t been able to complete something he was doing at home, that was unfinished when it was time to leave the house. Normally he would be easy to reason with, and we would manage but at the moment, he is tired and it has all caught up with him, and me. I wanted to cry after I left him. His teacher mailed me to tell me he was ok but seemed very fragile and tired. That sounds about right.

We don’t know why he isn’t sleeping well. We don’t know why bedtime is such a struggle. We know it will pass, it always does but whilst we are in the middle of this fit of whatever that this sensory processing beast has thrown, and our boy is struggling that bit harder, we carry on. We fake the smiles when we are asked “how are you?” because no one wants to hear about the sleep we aren’t getting. No one wants to hear about the screaming meltdowns I am dealing with. No one wants to see my bank statement and the evidence of coffee consumption doubled in my bank balance updates.

People who don’t deal with the edges of parenting where a child has extra needs don’t get it. It’s tiring to keep explaining. It’s tiring to try and justify why we haven’t been around for a few weeks, and why we didn’t attend certain events because we know they just aren’t what will work for us until the beast is tamed and calm again.

This too shall pass. The beast will calm, and my beautiful boy will be less tired, less friable and his happy and lovely self again.

*For reference, I am not calling my son a beast. When I am tired and feeling weary, the sensory processing disorder that we help our son with can seem that way, and we feel like we haven’t figured out how to tame it*

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