The Bittersweet Gift of Family Reunions When Your Child Is Autistic

And why even I exclude Diego sometimes

This year’s busy calendar

ā€œWhatā€™s the funniest thing that has happened to you lately?ā€ my sister Gabi asked a group of family members one evening this past June. We had gathered at the big old porch of the Lillagaard, a bed and breakfast in Ocean Grove, New Jersey, where we spent three days of our two-week family get-together this summer.

Gabiā€™s 9-year-old son Marcelo (aka Marce) was the first to answer: ā€œAt the beach today, there was a sign that said no diving. Thatā€™s funny cuz you canā€™t dive into the ocean. You just walk in.ā€ Thereā€™s no telling what 9-year-olds find funny.

We debated Marceā€™s assertion, deciding that although there was no cliff to dive from on our stretch of beach, you can still break your neck if youā€™re in the water and dive down. Also, a person could get hurt if they dive into a wave and the wave slams them against the bottom.

Unable to recall a personal story, I shared what had happened to my son Andres that afternoon when he and his girlfriend joined a couple of guys playing cornhole.

Andres knew the game was about landing the little bean bags in the hole but was keen to learn the rules and how to keep score. Well, besides the rules of cornhole, Andres learned that one of the fellows had been healed by Jesus. It had happened at a prayer service where the congregants all prayed to Jesus to rid him of his severe back pain.

I can just imagine Andres taking this story in and how on earth the topic came up!

“Well, I peed my pants in broad daylight today,” another sister shared. “I wanted to pee in my bathroom at my bed and breakfast instead of the beach, but the closer I got to the B&B, the more urgent I had to go. I was almost there when it all came pouring out. That was a first.”

Eventually, whether later in the day or a year out, most unpleasant, embarrassing experiences are funny.

I love our summer reunions. My family is precious, and I feel the most myself around my siblings. But our reunions always come with a piercing pain in my heart.

Because theyā€™re a yearly event, I get periodic check-ins into how my 30-year-old autistic son Diego compares to the other 18 grandchildren and how I feel about it. And although I now radically accept Diegoā€™s disability, the various feelings Iā€™ve experienced emerge at some point.

This year, it all came out during our three days in Ocean Grove.

I recalled my despondency when being around Diego’s cousins brought home the fact that he would never “catch up.”
I relived the frustration I felt when no matter how hard I tried, Diego could not learn to add single digits.
I recognized the envy I felt about all the stuff his cousins got to do but Diego didnā€™t: no trips with friends, no invitations to parties, no dates, no driverā€™s license, no marriage.
I was reminded of how angry I felt about all the support Diego needed compared to his cousins. I recalled how jealous I was of the freedom my siblings would have when their children grew up.

It was also reassuring to confirm that I haven’t felt angry, envious, frustrated or jealous for some years now.

Still, when I look at my nieces and nephews, there’s lingering sorrow that my Andres didnā€™t get to have a typical sibling.

Also, this year, it hit me that Diegoā€™s relationships are not fully reciprocal, not because anyone is insensitive or doesnā€™t love Diego, but because itā€™s hard to focus your attention on Diego plus anyone else.

As awful and painful as it is to write what I am about to write, even I exclude Diego. Even I want some of my time with my siblings, nieces, and nephews to be specifically without Diego. I know Diego notices, yet he doesnā€™t complain. I believe that at some level he understands, but he is so aboveĀ  resentment and bitterness that he doesnā€™t hold it against us.

He is a person who appreciates what he gets.

Every year I am more at peace with who Diego is, with the mistakes I made, and with the mother I am today. I celebrate all the love Diego pours into the lives of those around him and am grateful for the immense privilege of copious family support.

I am overjoyed that Diego has so many people to love because thatā€™s what makes him happiest: loving his family, regardless of how much love he gets back. Itā€™s hard to believe that this is possible, but I know it is because of Diego.

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