Counterintuitive – my word to describe dealing with autism. Counterintuitive.
I want to open this discussion with a super simple example.
When my autistic daughter was an infant, her muscle tone (or hypotonia) was so low that she struggled to eat. (Lots of kiddos with autism also have these types of issues. It is not necessarily a symptom or characteristic of autism, but may be the result of a comorbid condition. You can read more about comorbidity in my post, “Comorbidity: Life with Autism and Its Closest Friends.“)
My daughter nursed about every hour and a half around the clock for the first year while we sat on the waiting list for a speech therapist in our area to help us with feeding issues. Needless to say, by this time, I was thoroughly exhausted. Tired in general and tired of waiting, we sold our house (there were other factors involved in this decision as well) and moved to an area where assistance was available.
Oblivious to the “Obvious”
Our new therapist quickly suggested I try feeding my daughter cereal. I showed her how I tried to feed my daughter cereal, making it as thin as I possible hoping my daughter wouldn’t choke on it. After all, breastmilk is super thin, and she never choked on that.
Quick to correct me, the therapist fed my daughter very thick cereal which she effortlessly devoured.
I had it backward. Exactly backward. GRRROOOOAAAANNNN….
As a parent of a child struggling to eat and as a mom tired of functioning as a human vending machine open 24/7, this realization crushed me!
With everything in me, I wanted nothing more than to see this baby, my baby, my daughter, thrive.
With everything in me, I wanted a good night sleep.
Yet, in my ignorance, I provided my daughter with the opposite of what she needed, of what I needed, of what my family needed. My ignorance prevented her from eating and kept both of us from sleeping which would have resulted in a better environment for the entire family. Unmet needs of one family member tend to spill over onto the entire family.
Why, when my daughter struggled and struggled with that thin cereal, why did I not thicken it instead? Why was she able to ingest thin, thin breastmilk and not thin cereal???? What the heck?
A total miss. A. Total. Miss.
The best of intentions, right? Have you ever had one of those moments?
Opposite Your Comfort-zone
Now, in all honesty, I believe she was probably better nourished for having been breastfed for that period of time. However, we both probably would have benefitted from a break at least several nights a week.
In addition, I give myself credit for other things I got right. I recognized the feeding issue was associated with her low muscle tone, I sought help, and I went to great lengths to acquire that assistance. Points to me for that at least.
Popular books detailing how to care for your newborn fail to cover how to help a struggling baby. These books touch on caring for the perfectly healthy, neurotypical baby. Even then, these books often leave you without realistic expectations about what is about to happen to your life. The internet, while much better now than back when we were struggling also only goes so far.
It seems like as a parent of a kiddo with autism, these moments come all too often. Not giving your autistic loved one a hug may be the best way to show understanding and affection. As an autistic parent, the reverse may be true, giving your neurotypical (non-autistic) kiddo a hug may be the best way. Sitting quietly when you want to talk may demonstrate compassion. And the converse also rings true, talking may be what is needed at a time when you feel a need to sit quietly. Not requiring your child to wear a coat or clothing that seems so comfortable to you yet is painful for them exhibits respect for someone’s individuality and uniquely wired sensory system. The list goes on and on.
I both have autism and am the parent of a kiddo with it, and I can tell you that even as someone with autism, I get it wrong for my autistic kiddo. And not just for her, both for my autistic kiddo and for my neuro-typical kiddos alike. Because really that is a part of parenting that is normal – trying your best, learning there is a better way, forgiving yourself, and moving forward.
The overall lessons I learned?
Intuition is in the Eye of the Beholder
Get out of the box, stop listening to the world, set aside the pressure of those around you, and look for that which is intuitive and makes sense to you. If that does not work, look for the counterintuitive which may make sense to the person or people you are trying to serve. Listen to their words and their behaviors and adjust accordingly. Never be too prideful to seek help.
Some of my greatest wins as a parent and in other relationships have come from doing things that seemed totally backwards to me, sometimes to the point of being sacrificial in nature, to show love and compassion to someone who is dear to me.
Autism is not limiting the way we think about the world. It is expanding the way we view it. It is not a matter of simplifying life for those around us, it is about understanding the complexity of the world in which they live. Something that generally is viewed as beneficial may cause you rage. Sometimes compressing your life will allow you to expand it. Sometimes the journey you are on is contradictory to those witnessing it or even to you as you experience it.
Take heart, the more you experience the counterintuitive, the greater will be your intuition. So go out and grow!
You can find a way with Her Autism!!!
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