Tuesday, April 28, 2020

The bittersweet joy of celebrating a child's birthday during quarantine

This guest post is by Susan Cohen, an awesome woman I met through the blog. She is mom to two super-cute boys; her oldest, Elliot, has tuberous sclerosis complex that has lead to developmental delays. Here, she muses about celebrating his birthday during quarantine, and all the sweetness and bittersweetness that brings.

As I sit here on the eve of my son's 8th birthday I...am. When you have a son like Elliot, an easy going, happy, unique boy you wonder about the most appropriate way to celebrate him. For every birthday that we approach there is always a feeling of pride and melancholy. Another year of the laughter and hugs of our sweet boy. Another year where the divide between he and his peers gets greater, the chasm now approaching that of Grand-Canyon-sized proportions.

Elliot does not communicate using words, instead he requires a caregiver to meet all of his needs. He is sometimes able to convey the most basic of wants, such as "more goldfish," either using his talker or by taking a caregiver to the table, where we must surmise his requests. Elliot has been working on a toileting protocol since December of 2018. He has made tremendous progress but there is something incredibly humbling about continuing to order diapers for your 8-year-old child.

This particular birthday is distinguishable due to the Covid-19 pandemic and the social distancing mandates. In a way, special needs parents are the best equipped to deal with this social distancing/self isolation. We have gone through the grief that has been popularized in recent weeks: grief over a loss of control and predictability. Special needs parents are experts in this. From the time our children are diagnosed with [insert rare genetic condition and or pervasive developmental delay] we are adapting. Adapting our expectations, our families and friends, our locations, our hobbies, our own wants and needs. We are fighting for therapies, schooling and acceptance.

Eventually we realize that we just instead have to accept our own version of normalcy, even if it looks vastly different from what we envisioned. Sometime in the beginning of our special needs journey people pass us "Welcome to Holland," as if it is the gospel of but life is  more like "Welcome to Fallujah," as assaults come in every form, from every direction and while the color of the blue sky against the vast desert may be pretty, it is exhaustingly difficult.

As we approach eight years old, Elliot is getting bigger but his needs don't really change. It is significantly more difficult to manage a 65=pound boy than a toddler, though those are the needs we attending to. His medical needs persist; we never know when the seizures may strike. Fallujah indeed.

While us special needs parents may be the most prepared for this type of disruption in routine, we are also the most susceptible to difficulties because of it. So here we are in self-isolation for over one month now. We've got green grass and blue sky and a trampoline and I am unendingly grateful for that. However, we have been separated from the entirety of our support system. A system that includes people who come to our home do behavioral therapy with Elliot. His teachers who work with him every day at school. A cadre of speech therapists, physical therapists, occupational therapists and vision therapists. People who come assist Elliot in the community to learn a bit more independence and people who help in our home to assist Elliot with the activities of daily living such as eating and bathing. This entire network has been ripped away and replaced by teletherapy. Zoom sessions and assignments from school which sound great in theory but are exceptionally difficult to execute given Elliot's distinct profile.

He sits, he knocks the table, he gets up, he bangs the wall. He bangs the floor, he takes his shirt off, he pulls the handle on the See n’ Say spin farm as if he has wandered the beautiful desert in Fallujah for eight years and it is giving him water. This all happens in a span of about thirty seconds. On repeat. All day, every day.

There will be no birthday drive-by for Elliot, no friends sending cards and no zoom birthday celebrations. He would not sit for it anyway, but it is sad, as it is every year, that the network he has only consists of the one we have built to support him, and us as we care for him.

We will celebrate Elliot together at home. We will make a cake even though Elliot does not eat cake. We make the cake for Pacey, so that he knows that Elliot's birthday is every bit as important and cake deserving (the pinnacle of celebration in the eyes of any typical four-year=old) as anyone else's. We will get snacks and do an epic "crunch buffet" for Elliot that will include his favorites like goldfish, pretzels, and animal crackers.

I'm guessing Elliot will be pretty nonchalant about the whole thing. He's pretty cool that way: I worry about all of the things, and he just enjoys all of the things. And when I've had a blessedly full night of sleep and he pulls me in for a kiss and hug I know all is right in our world, even though I wonder how we will continue to function this way for months to come. And I realize that like at all other times during this special needs parenting journey it will be messy, but we will be okay. We will all be okay. So I will take one deep breath before blowing out those candles and saying "Happy Birthday" to my firstborn, the one who prepares me for all the important moments in this life.

1 comment:

  1. My son recently celebrated his 8th birthday and your post made me reflect on our journey. Thanks so much for sharing a part of your story. I found myself nodding my head while reading about how parents of children with disabilities have experienced feelings of self-isolation/social distancing before -- and I feel as if we've eased into the current situation a bit more easily than some of my friends/family with typically developing kids. Hope E had a wonderful birthday.


Thanks for sharing!

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