Through Amy’s Eyes: It’s A Family Affair
“What if Jessie never says ‘Jacob, I love you?’” my sweet, little boy cried out after knocking books off his bookshelf. His wailing for the next hour made my heart hurt. It seemed that I was so caught up in my life as a special needs mother that I had somehow missed the signs of Jessie’s older brother’s own pain. While Jake’s outburst felt like a surprise, it was probably a long time coming. He was clearly wrought with worry, fear, and, perhaps, a little bit of embarrassment.
The adjustment to being a special needs family is not unique to the parents. It’s truly a family affair. Grandparents, aunts, uncles, all, at some point, have to make adjustments. Expectations, events, and even menus tend to evolve when you have a member of the family with special needs. I wonder, though, if no member of the family is more affected by the addition of a special needs child than an older brother or sister who, eventually, either consciously or subconsciously, realizes, “Wait, this isn’t the gig I signed up for.”
Jake was so excited to have a little sister–but even her arrival didn’t go according to how his four year-old self wanted it to. He was distraught when, at 10 p.m., he had to leave the hospital as I kept getting bumped from the OR for my c-section. He hated the fact that the first time he saw Jessie, she was behind a glass window in the NICU. I have beautiful pictures of him with his sheepish grin, finally holding his sister in his arms when we got home. He was a doting older brother when she was an infant. When I had concerns about Jessie’s vision, I was reassured to see her tracking her big brother zooming by on his way to engage his GI Joes in war on our couch. Jessie, whose infancy was eerily quiet, would belly laugh when Jake would tickle her with overzealous, big brother energy. We had early intervention therapists in and out of our home all the time, yet, it was Jake who garnered the best results.
In retrospect, as the kids got older, Jake pulled away from Jessie a bit. He went from running right to her bouncy chair when he got home from school to making a sharp right turn to head upstairs to his room. Instead of being in her face singing silly songs on Saturday mornings, he would only now periodically pop in to make her laugh hysterically and then quickly return to his Xbox. As he entered middle school, he rarely had friends over. I attributed this to the fact that I seemed to embarrass my middle schooler incessantly, (I mean, I did have a tendency to sing show tunes at the top of my lungs, but I now wonder if he was becoming self-conscious about his sister, who had very limited language and a host of other challenges. Yes, we did therapy and had conversations ourselves. But 12 year old boys don’t tend to jump into those moments with verve; and as a mother who was already overextended, I didn’t push him when he resisted. I certainly wish I had.
As he got older, I could tell when Jake had a new friend with some kind of connection to special needs. Perhaps they, too, had a family member with special needs or were a college student studying special ed. He would be more present in Jessie’s life for a short time or ask me more questions about her during those periods. I got to see a glimpse of their old relationship when, in the spring of 2020, the three of us were locked down together during the start of the pandemic. He was back to dressing her up in ridiculous outfits, making her laugh; she returned to nestling in the crook of his arm while he texted with his friends.
Looking back, I wish I had signed Jake up for every sibling workshop I had read about… or even just one. An affinity group like that, perhaps, would have made him feel less alone. A sibling group would have been a safe space for him to be raw with his feelings. Jake and I have always had a close relationship, but I sometimes wonder if he didn’t want to make this a topic of conversation for us because he was afraid it would hurt me.
At Gillen Brewer, siblings are an important part of the school-home partnership, which is one of the founding tenets of the school. On February 13th, the school will be offering “Come Sit in My Chair,” a sibling support workshop led by our counseling team. Gillen Brewer psychologists will facilitate discussions about what makes Gillen Brewer different from other schools, as well as what it is like to be the sibling of a child with special needs. This is just one of many events that the school offers as a part of our vibrant school-home partnership, as we know that this is a journey that all of the members of the family are on.
Jessie did eventually say “Jay-ta-ba, I love you.” It was a momentous day for all of us. While I know that Jake does worry about his role as Jessie’s brother, especially as I get older; I can see how it has also been a gift to him. His resilience, his protective nature, and his big heart leave me very proud.
Amy Salomon is the Director of Middle School and Enrollment at The Gillen Brewer School. She has over 30 years of experience in independent schools and was, most recently, the founding Director College Guidance and Upper School Academic Dean at Mary McDowell Friends School. In addition to her work experience, Amy is the mother of a child with special needs as well as a neurotypical child who currently works in the music industry.