Sometimes parents of kids with autism are thought of as superheroes with super powers that allow us to power through day after day, year after year. Alas, ’tis not true; we are mere mortals who often muddle through our days after too many sleepless nights. While we appreciate the confidence others seem to have in us, we also want you to know the reality of being a parent of a child with autism.
1. We understand our child completely.
If I had a dollar for every time I couldn’t figure out my enigmatic daughter, I’d be a rich mama blogger. As a veteran parent, I know her better now than ever but that still leaves me woefully inadequate too many times to count. I remember once when she was much younger and was having difficulty breathing with croup. Her dad was out of town and her brother was asleep in the next room so I made my first 911 call in the middle of the night. Three medics arrived and after explaining that she had autism and croup and that I couldn’t get her to cooperate with the nebulizer or inhaler, they looked at me and asked me “what do you think we should do?” I melted into a puddle of tears as I muttered, “that’s what I called you for!” I ended up suggesting we make a tent of her blanket and have their much larger nebulizer hose tucked inside. They thought it was a great idea!
2. We always understand what you (our child’s provider or teacher) are telling us.
If you only knew! Our sleep-deprived brains are trying to keep up with you, I promise, but we take in so much information in any given day that we may just be nodding our heads yet not absorbing what you are saying. We’re likely trying to remember to pick up the med refill, complete the forms for school, confirm the therapist appointment, get our other kid to soccer, and stop at the grocery store on the way home. So forgive us if we ask you to repeat something or look at you bewildered at times. It’s helpful if you keep it short and to the point and then summarize your main points. We really appreciate when you write things down for us!
3. We don’t need much sleep.
Someone once asked me if, after all these years of broken sleep, my body had adjusted and now needs less sleep. No. My body still craves a full night of uninterrupted sleep and I still feel the effects of poor sleep. I have, however, learned to get by, to make it through with not-enough sleep. There’s a huge difference between the two. If we’re a bit cranky, forgive us, it isn’t personal.
4. We are always strong and courageous.
Yes, we have learned to be strong and courageous – but always? No. At times, we feel weak and humbled by the ongoing stress and there are times we just need to admit this so that we can later regroup and be strong again. We may need to cry or tell you how hard it is or say that we feel as if we can’t do this much longer. We don’t expect magic solutions. Sometimes we just need to have you echo our feelings and validate that the job we have is difficult.
5. We never get frustrated or upset with our kid.
While we have learned to be patient and neutral in the face of trying behavior with our kids, we lose it from time to time. We make bad behavioral moves we will later regret (just one cookie before bed this one time only), we fuss right back when our kid fusses (a lot of good that does), and we get weary after hearing the same scripted phrase for the millionth time (“to infinity and beyond” sound familiar to anyone?).
6. We remember everything.
This goes along with number 2. I used to have the memory of an elephant but there no longer is room in my crowded and shrinking brain to keep track of every little thing. Whether it’s past medication doses or IEP goals, I let go of what is no longer relevant to daily functioning. So if you ask me what the dose was of the med she took three years ago, I will ask if you can look it up on your computer and mean absolutely no disrespect.
7. We’re totally selfless.
We are so very close! But we must have some degree of self-centeredness in order to not neglect our own health and well-being. We have enough guilt of our own for doing small things for ourselves, so it really helps if you point out the positives for us and our child when we focus on ourselves too.
8. We don’t make mistakes.
Parents of older kids with autism seem to experience this more where people somehow think we are infallible because we’ve been at this for so long. We are wiser, yes, but not infallible. Please read our blog on Mistakes This Parent of a Child . . . has made for many examples.
9. We read minds.
Oh, if this was only true. It surely would come in handy when trying to figure out our kids and what you’re telling us!
10. It’s easy for us to drop everything for your schedule.
If you only knew what it takes for us to pull off getting our child any where. So much planning and logistics are involved in making it to appointments. Many parents work full-time and already take more time off than most for our kids’ needs. If at all possible, try to accommodate us, rather than the other way around. We truly appreciate it.
Fellow parents, now it’s your turn. What other myths are there about parents of kids on the spectrum? Share them with us!