When we are out, I see how you look at me and judge my parenting because my child is watching a video while we eat.
I see how you shake your head and whisper about how I must a very lazy parent to not just engage with my child while we eat.
I see it all, and I am screaming inside that I see you.
I know you are judging me.
Prior to having my son with special needs I was the same as you.
When I saw parents allowing their child to do this, I would think the same thoughts.
Then I was given a child like Von. You see my child was born with a complex disease.
The disease nearly killed him when he was 3 months old. He had not yet been diagnosed, and he spent a week on life support clinging to life as doctors tried to figure out why all his organs were failing. When he finally got diagnosed, the damage was already done.
He had prolonged blood sugar for more than 48 hours, and it dipped as low a 7 when he was the most critical. A blood sugar of 7 would kill most people. It did not kill my son, but it did damage his brain. Doctors told us, “Your child will never be Einstein”.
They talked about “learning disabilities” and “developmental delays”.
He was just a tiny baby then, and at the time I ignored it.
He started growing, and the further and further he fell behind his peers. He seemed to respond excessively to movement, and he would avoid touch and texture. He would become obsessed with cars, trains, and trucks.
While other children were playing with toys, my son was itemizing them, lining them up, and organizing them by type.
He didn’t know how to play, he didn’t know how to socialize, and he didn’t know how to eat.
We tried everything. Every single thing you can imagine, every food, every technique, and there was always a strong pursed lip and head shake when food came close to his mouth.
Then one day we gave him a phone. He was able to distract himself with the entertaining clip on YouTube or silly dog video. We could sneak the bites in and encourage him to chew. After months of exhausting so many possibilities, we sought therapy with professionals to help. The therapists said “your child has Apraxia of Speech, Oral Apraxia, Severe Oral Aversion, and Sensory Processing Disorder”. I looked at the therapist and had no idea what any of that meant.
They explained that he is so overwhelmed by all the things around him that he cannot effectively process motor movements in his mouth, he is unable to chew and swallow because he can’t coordinate his in his brain, and the only way he can do any of this is if we make the process automatic versus planned. It finally made sense.
All this time, and all those judgmental looks from friends, family and strangers, and I had somehow known my child well enough to know he had to be distracted.
If Von had to plan it on his own, his brain cannot do it. He cannot chew if he has to think about it. He cannot speak if he has to think about it.
Everything must be spontaneous or he has to be significantly distracted by other things to do very basic skills. I asked the therapist if it was OK for him to watch a screen while he ate. She told me he has to eat, and until we can help him learn to master this skill on his own, everything in our home should stay status quo. We should not interrupt meals and expect him to sit still and eat without distraction. He needs distraction to eat.
I felt validated when she told me I wasn’t being a bad mother for allowing this behavior.
However, it doesn’t mean those looks I get when we are out don’t sting any less.
I know people think I’m a lazy parent, and judge my choices. I see the comments on social media, and no matter how hard I try to not let it effect me, it does.
Parents of children with oral motor processing disorders, have to do things very different.
It wasn’t even something I knew about before being a parent.
I didn’t realize how hard it was to chew and swallow.
I didn’t realize that touching textures would be so hard for my child that he wouldn’t feed himself.
I had no clue that he would lack coordination to lift a spoon to his mouth to feed himself. I know it looks strange to see a 3 year old be spoon fed by a parent, or to see me fight him to open his mouth to eat. Or when you see me put my finger in his mouth to scoop out the bolus of food from his cheek, I see those looks too.
What we are doing isn’t normal.
However, we are doing our best to allow him to grow and thrive.
We are all determined to help him learn to eat, because a feeding tube would be a huge step backwards.
Next time you see a parent out like me struggling with their child to eat, instead of judging, maybe give them a sympathetic look or a high five and tell them you understand.
Let them know you aren’t judging them.
Eating disabilities are real.
They are very hard on all members of the family.
Be compassionate and remember we are all just doing our best.