“What did you pack me for lunch?” demanded my eight-year-old. I hear this question every day. Despite the fact that I try to always pack him foods I know he likes, he will question my commitment to his eating lunch every single day. I feel my whole body tense as I prepare for what is sure to be another battle after a long night of night terrors and sleep violence.
“Don’t worry. I packed you all things you like”, I say with a smile, trying to avoid further conversation on the matter.
“But what did you pack??” he presses, growing more agitated by the minute.
I inhale deeply, and in one breathe I recite the list of foods hiding in that nutritional cul de sac of a lunch box.
Instantly, there is a cry of rebellion when he hears the word “cucumber”.
“CUCUMBER? I HATE CUCUMBER!” And so it begins. A full-on meltdown has ensued, despite the fact that not only did I pack cucumber on Tuesday, but he ate them all. This week alone, he has decided from day to day that he likes turkey sandwiches, hates turkey sandwiches - likes carrot sticks, is allergic to carrot sticks - loves pears, all fruit comes from the devil himself. If the lunch line didn’t give him “anxiety”, he could simply buy lunch at school. Which would be a huge relief for me. But alas, no.
He proceeds to slam the door with great force and lock himself in the bedroom, refusing to get dressed, until he has dismantled the lunchbox completely and replaced it with snacks he thinks I am hiding from him ( I’m not.) There are tears. There is swearing. There is threatening. At which point his father, who works 16 hours a day and has little to no one on one time with him and rarely does the morning routine, decides to pull rank and storm the bedroom in full old school mode.
Everyone is now screaming and yelling at each other at 7:45 in the morning - over cucumbers. One of many battles that will layout before me today.
He is off to school now, in full on tears, kicking and screaming along the way, and I, sleepless and shaking, attempt to begin my day.
I remind myself that I am not alone in this struggle. There are parents of Autistic children fighting similar wars all over the world right at this very moment. Maybe it’s about shoelaces - or a passive-aggressive clothing tag placed in just the wrong spot - or it’s a day that ends in “y”. Whatever it is, it’s real and it’s exhausting, and that parent is probably feeling as alone as I am right now. Lost. How will my child find his way in the world when we can’t even get through breakfast.
At five months old, we knew something was wrong. It took nearly eight years to even begin to flesh out a clear picture of this child’s issues. Because he has multiple disorders (Autism, Selective Mutism, Tourette’s Syndrome, ADHD, and DMDD), there have been more evaluations and tests than might be necessary for a child with a singular disability. One medication that might help one disorder, is contraindicated in another. The social worker at his pediatrician's office doubted that I had exhausted every resource possible for this kid. She said she would look into other options and get back to me. Two weeks later, she called me to confirm that she, herself, could find no resource that we hadn’t already tried and wished us “the best of luck” and that I should file for disability for him - which I did. It took me four hours of documenting reports, dates, and notes from over 20 doctors in what was absolutely the most difficult process I have ever gone through. That’s saying a lot. I am fluent in bureaucracy.
At least that advice was positive in some way. We have received far less effective or helpful advice from other well-meaning (and not so well-meaning) people. “He just needs an old-fashioned spanking”, “He needs a child psychiatrist (good luck finding one of those on Medicaid)”, “He needs Jesus/Church/Sports/Books/Medication/Military School/ Stronger Parenting/Consistency/Hospitalization/Chores/Manual Labor/Scared Straight/Love/An Earlier Bedtime/A Later Bedtime/A Dog/A Holistic Diet etc., etc. etc.
There was a study done on the effects of parenting a special needs child, and it was found that those parents experienced symptoms not uncommon to combat veterans. I totally get that to some extent. I find my hands trembling at the end of most days. I panic when I feel a battle coming on. I don’t sleep (even when he is not waking me up). I have nightmares.
And, for the most part, I am handling it alone. That’s the hardest part for me - feeling alone.
So, as I try to think of a conclusion to this little essay, I want to end with something positive and uplifting. I want to be able to say “Hey, this miracle saved our whole family”. But I can’t. What I can do, and what you hopefully, are getting, is that you are not alone. I am not alone. You will survive it all, and your child will too.
And, on the very bad days, even when your child is shrieking “I HATE you!” at the top of their lungs for all the neighborhood to hear, they love you. They do. They know they can come to you when they are sad, or when they are frustrated. They know it is you who will protect them, even from themselves. They know you are present, even when you don’t feel very present yourself.
You are doing an amazing job.
There are support groups for parents who are struggling. Click on the links below to get some help and support locally. Ask for help if you’re feeling overwhelmed. Inquire about respite care. Find playgroups and activities that are welcoming to children with special needs. Get resources if you’re struggling with depression and anxiety. It’s so easy to find ourselves feeling isolated. You don’t have to do this alone. Just like on an airplane when they tell you to put the oxygen mask on yourself before your child, you need to take care of yourself first. Hang on. We feel you.
