As A Parent To Multiple Kids With Special Needs, This Is What I Want People To Know
My “rap sheet” grows every year — I have asthma, endometriosis, dysautonomia, MVP and major depression. Once I became a mother the list grew more: mom of a child on the autism spectrum disorder (ASD), immune deficiency, food allergies, apraxia. With a list like that, “how are you?” becomes a cumbersome question.
How am I? Well, it’s 9 pm, my kids are sleeping, and the cookie dough is calling my name… so pretty good right now! Is that dishonest? Is it dishonest to not tell the whole story? I don’t believe so. But what about the people in our lives who care?
For those of us who cannot simply “pick a struggle,” this water is pretty murky. If I only share the wins, I am accused of being fake or sugar-coating. If I only share the struggles, I am accused of being negative or lacking perspective, or people lay on the advice. What do we do when we cannot pick a struggle, and the list of things to share gets too long?
We find our tribe.
One of the biggest struggles of having chronic anything is the isolation. I’m not just an ASD mom, I have exhaustion issues due to chronic illness. I’m not just raising three children, age four and under, I have two children in different therapies. I do not need to find someone who magically resembles my situation; I need to find someone who isn’t overwhelmed by my buffet of struggles. Someone who sees it all and factors it into our exchanges without me having to remind them. I need someone who has struggles too, but isn’t a victim (because we may not be super heroes, but we aren’t minced meat either).
Pick a struggle? Nope, sorry, not gonna happen. Enjoy the buffet or move along — and yes, it is personal. This is my story we are talking about. This is my family. We aren’t defined by our struggles, or our victories. We’re more than that.
We are not defined by our struggles, but we do interact with our struggles daily.
1. When I say I’m tired, it could mean dozens of things, and it probably does. Ask questions, do not make assumptions.
2. My children have diagnostic labels so we can outsource and find the help they need. These labels do not define them, are not crutches and do not excuse poor behavior. They do, however, give us patience and perspective to discern how to help them when they struggle.
3. However well-meaning, questioning my or my children’s diagnosis/prognosis is not appropriate. We do research, we seek multiple opinions and we work really hard to function within a perceived “normal” range. If you find yourself reading between the lines, try to ask questions instead. There are a lot of moving parts; you may not see them all, no matter how close you feel we are.
4. Some seasons are significantly harder than others. Take autoimmune issues — a child who knows they cannot speak clearly, another child with social and sensory processing issues, my own breathing issues, and then throw in all-nighters, growth spurts or the flu season (because, you know, we still have normal family drama also). Things suddenly get a lot more complicated. Bear with us.
5. We may be resilient, but please do not idolize us. Given the option, we wouldn’t choose this path. Do not tell us “you’re so strong, I couldn’t do that.” Like others who walk hard paths, we aren’t saints. We live our lives one day at a time, sometimes hours or minutes at a time. Not always because we believe everything is going to be OK, but because we have hope. Not the pretty kind that you can tie a bow on and put on display — the messy kind, the realistic kind.
Still with me? Can you handle the buffet? We don’t have to pick a struggle.