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Through Amy’s Eyes: What to Expect When You Don’t Know What to Expect

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When Jessie’s puberty was off in the distance, the thing that loomed most for us was, not surprisingly, how we would all deal with her period. Would Jessie be freaked out by the blood? Would we have to prepare for meltdowns every 28 days? My ex-husband, I eventually learned, was petrified that, the first time Jessie would get her period, I would be vacationing in Europe. Clearly, he envisioned my life to be more glamorous than it was. In the end, it was actually a non-event. Jessie handled it like a pro; my ex didn’t go into the witness protection program.  And for me, it turned out to be just another week of the month. We had all become adept at resilience.

My pace in this special needs parenting world has generally been “one day at a time.” The “What to Expect” books didn’t really pertain to me, and I was really winging it without a strong support team. I quickly realized that Jessie’s adolescence was more than shopping for training bras and using that absurdly long CVS receipt for a discount on Always maxi pads with wings. There are social-emotional elements that I have never contemplated.

As a special needs mother, I keep close track of my daughter. I know what she has eaten, what her toileting is like; I can anticipate when she is getting sick and am her expert translator for others. Yet, for all that, there is so much that I don’t know about her. When you have a child with profound expressive language delays, you are often filling in the blanks and figuring out what she is saying from the context of the situation.  But there is an inherent flaw in that behavior; you can’t give words to feelings you don’t anticipate. Truth is, there is so much I don’t know about this human I know so much about. 

Despite her challenges, there are a few things that feel closer to neurotypical for Jessie. She loves boys, for example; whether it’s a male classmate in a wheelchair she likes to help out by pushing or the fact that every time I asked her about my wedding this past summer, she insisted that SHE was marrying Joe. But she will NEVER have the language to fully express if she likes someone as a friend or wants something more. I know I will need to give her communication strategies for her desires, just as I helped her find them for everything else.

Most parents feel a certain sense of anxiety around shepherding their child through puberty; maybe that’s because we all have our own memories of how awkward and confusing that time was for ourselves. Nonetheless, this stress is multiplied when you have a child with special needs (or exponentially in the case of my ex!). With the recent opening of Gillen Brewer’s new middle school program, the team of teachers and therapists is developing a curriculum to support our learners as they head into adolescence—and their families as well. Additionally, as part of our Family Workshop Series, Gillen Brewer is partnering with Manhattan Psychology Group to offer a session for our current families on this topic.

Having a child who is chronologically 13 but developmentally not can be challenging for everyone. A strong partnership between home and school can truly be the beacon in this adventure—as can a sense of humor. Having watched my neurotypical son go through puberty, I can say that there are actually many blessings to be found in my special needs journey as opposed to that one!

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.

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