ON. ON. ON.

When you have a child with special needs, you are ON at all times.
Or, it certainly feels that way. Often.

When you have a child with Prader-Willi syndrome (“PWS”), because of the high food drive, called hyperphagia, you have to be structured, consistent and vigilant, about the food schedule, food security, and keeping everything locked.

Not leaving any food out.

Avoiding parties. 

Avoiding restaurants.

Preparing for holiday get togethers. ( All of these, pre-COVID obviously).

This pandemic and forced isolation is TERRIBLY disruptive to us families with a child with special needs. We are used to the support teams that we rely upon. And with COVID being so contagious, families have not been able to, or have chosen NOT to, have the usual therapists and caregivers in their home.

As a mom to a son with PWS, the isolation cuts down certain social losses, that involve food. A relief.

And yet, we are home 24/7, with multiple people in and out of the kitchen all day and night.

17 ½ years in to this PWS journey as a family, and still, not everyone remembers to lock the fridge and pantry. This has been frustrating for me this past year, because I am ever vigilant. (Not that I myself have never been distracted and walked away either.)

These days, I am at a NEW LEVEL of being constantly ON.

ON. ON. ON.

You cannot leave your coffee cup (if you are the type to use yummy sugary creamer!) anywhere.

Don’t dare walk in with a drink from ANY take out place and set it down to use the bathroom.

Don’t dare to have any treats stashed away anywhere in your bedroom or office.

Our other kids cannot ever forget to lock their bedrooms, because Ryan will ransack them looking for food or candy or gum.

I cannot leave gum in my purse, in my bedroom, or my car.

If you are heating the oven for your leftover pizza, don’t you dare walk away from your slice on the counter, as the oven warms up.

We cannot have any food in the (inside) freezer. Just ice and beer mugs. I just recently bought frozen chicken breasts and they ARE in the freezer drawer. He may not care about those. Or he might.

We have been hiding the garage door remote in the last year. Well, because there is a refrigerator out there. And OFTEN people forget to lock it, and we DO keep food in the freezer. (Was not locked…yet…sounds so dumb and uninformed, I know…) This last month our garage door has been broken, so if you want in, you must manually lift it up. Oh, good!! Security, right???  Wrong.

A few years ago we were in this same situation and I smashed my fingers. (OUCHEEEEE!!) So this time around, I will not open/close the garage door on my own.  I know this is a champagne problem, but it’s a pain to ask everyone else to open/close. Honestly, Ryan seemed to ignore the garage. Lately.

Until he didn’t.

Recently, the second someone was not watching, BAM, he got something out of the freezer.

And then one night around 11 pm (when Chris and I were asleep), he went and lifted up the garage door with his skinny little arms. HOW???  The food drive is THAT strong. To his surprise, Luke was in there with a friend watching a movie. CAUGHT! 

The other day, Chris put a lock on the garage freezer. The garage was again left open. Why?????? Not sure how long, but not very long. Ryan found the moment no one was paying attention, and broke the lock (the adhesive of the “marine lock” needs 24 hours to settle and be strong, dangit…), and he took a carton of ice cream to his room. Thank God it was maybe half full!

This is life-threatening, this syndrome. Kids and adults every year over-eat to the point of a medical emergency and even, passing away.

I AM MORE ON than I have ever been. ON. ON. ON.

I now check under Ryan’s bed for wrappers or food containers. Every single day. Every single day, and even multiple times a day.  It is amusing that he never deviates from where he puts his food trash.

I now wake up in the night to check the kitchen and make sure EVERYTHING is locked.

I am on high alert, babysitting the kitchen if dinner/buffet style is out for a few minutes.  Or if I am unloading groceries.

My COVID office is in my bedroom. And I find myself lately bringing my work to the kitchen counter to babysit. Does anyone else babysit their kitchens? And their dinners?

I am attentive to where Ryan is at all times; an anxious level of attentiveness.

I literally can be in bed working or watching something and see to the kitchen. A blessing in disguise with a one-story home and this floorplan.

I told my oldest son, Luke, that I am feeling paranoid these days that he will somehow get the food he is desperately seeking, like air to the lungs. He is feeling it, too.

This is exhausting mentally, can you even fathom?

How do I make peace with this?

I can’t. I can’t ever let up again. I can accept that he has no self-control, that this is genetically driven, NO MATTER how well we train him. I cannot accept NOT being vigilant and putting him at risk.

Did I tell you that this is exhausting?

Yes, it could always be worse. And this is my “worse” these days. Compassionate me says: it is so hard for Ryan to be Ryan.

The human-mentally-weary me says: it is sometimes so hard to live with Ryan, because of how PWS affects him. It is hard to be me.