Living the life of a special needs parent.

Guest Blog by Kristy Donaldson PhD, LPC-S, RPT-S, CHST

Have you ever thought about what it is like for parents of atypically developing children? I was contemplating life today, as I often do, and that very thought popped into my head. It was most likely due to another failed attempt for someone to understand my child and why she was writhing on the floor, covering her ears, and repeating the same coined phrasing over and over. I could feel the stares and disdain, confusion and consternation, fear and misunderstanding from other parents in the space. I could feel the unspoken questions coming from their minds, simmering on their lips saying “why doesn’t she spank that child”, “that kid is too old to be acting like that”, “if I was her parent, I would…”, and so on. At this point each time, I feel compelled to over explain to a perfect stranger the situation saying “she was born at one pound”, “she was a 23 weeker”, or even whisper “she has autism”. Then, I am frustrated because for one, people are NOT equipped to handle that type of information and secondly it is honestly none of their business. Who’s with me on this? 

As if parenting alone is not difficult enough, throwing an atypical neurodevelopmental child into the mix and oftentimes as parents we feel like we are dog paddling backwards in a dark sea with weights attached to our ankles, just hoping to make it through one more minute. Maybe your circumstance is not exactly like mine, maybe you have a child born with Fetal Alcohol Spectrum disorder and they are now a teenager making impulsive decisions, or a child with oppositional defiant disorder and other behavioral distinctions, or a teenager that has depression and cutting behaviors and you are just exhausted. I see you trying, working, fighting for your child. I understand your pain daily, not knowing what the day will hold, silently holding your breath because you do not know when the next blowup, aggravation, or melt down will take place. This message is for you. You are enough, you give enough, your struggles are seen even when your small victories are not as visible. 

These parents do not need advice on how to raise their child in the middle of the grocery store. They need kind eyes and hearts. They need understanding glances and an offer to assist. They need people with good intentions who truly desire kindness. Please understand as a parent there are days we do not go to bed and sleep all night, we do not have calm evenings where everyone can have calm conversations and happy hearts. We experience texture and sensory issues at mealtime, dysregulation during every single transition during the day- even if the child desires the task, putting on clothes can take hours because something that felt okay last week does not anymore, overstimulation due to sounds, lights, and brain overload. Life is difficult.

While we are busy making sure our child’s needs are met, therapies are scheduled, and all the right help is constructed we often times neglect our own tired bodies and minds. People that do not have a child with special circumstances, consider offering a couple hours one day to allow the parent respite in the form of a nap, date night for the couple, meal, or time to grab a yoga class. These are invaluable opportunities for the primary caregivers to regroup and be the best form of themselves for their child with special needs. Actions are important extensions of ourselves, please consider how you have shown kindness to another person. Everyone has a story and they all hold importance and weight in this world, albeit typically or atypically developing.  

 

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