Looking Ahead: My Son’s (And My) Future

Looking Ahead: My Son’s (And My) Future

Gabrielle Kaplan-Mayer directs Jewish Learning Venture’s Whole Community Inclusion which fosters inclusion of people with disabilities through the Philadelphia Jewish community. She loves writing/editing for “The New Normal” and for WHYY’s newsworks. Her latest book The Little Gate Crasher is a memoir of her Great-Uncle Mace Bugen, a self-made millionaire and celebrity selfie-artist who was 43 inches tall and was chosen for this year’s Jewish Disability Awareness & Inclusion Month Book Selections. She’s recently shared an ELI Talk on Standing With Families Raising Kids With Disabilities and has released a journal designed for special needs parents.

My eight-year-old daughter has a clear vision of her life as an adult: she’s going to be a singer-songwriter and live part of the year in Paris, where she will own a boutique selling the accessories that she designs. She said that I could have a job there, putting the merchandise carefully into soft paper bags lined with tissue, if I promise to be very careful.

She’s a highly creative, energetic kid with a natural sense of rhythm, pitch and fashion, and my husband and I encourage all of her dreams, knowing that if she hits a rough patch breaking into the music or fashion industry, we can encourage education or other career choices that allow her to use her gifts.

As for her mom, I just had my forty-third birthday and enjoyed a beautiful, laidback day with family and friends, a hike with our yellow lab on a new trail and dinner on the porch of a neighborhood BYOB restaurant. I am grateful for exactly where I am in my life, and do my best to stay present, but had a flash, just for a moment, that when (God willing) I turn fifty-three, my daughter will be eighteen and ready to go off to college, a gap year or a waitressing job and apartment with friends; our two-year-old lab will probably not be able to endure a two-hour hike on steep trails and my eleven-year-old son, who has autism and intellectual disabilities, will be twenty-one, at the end of his tenure in the school system, also ready to transition to what’s next for him.

Right now, even with work, making time to nurture my relationship with my husband, some time out for myself and my friendships, my children (ok, and dog, too) are the focus of the majority of my thoughts and energy, my nurturing and problem-solving, my exhaustion and my love. On my birthday, taking a moment to pause and feel gratitude for my life, I was struck with how dramatically different ten years ahead should look.

The process of loving and letting go is the work of every parent. But when it comes to my son, I am keenly aware of how different the process I go through will be than with my daughter. In many ways, I feel like I’ve finally reached some equilibrium in my life—I’ve come through the shock of his diagnosis and my feelings of grief and have worked hard to learn how to relate well to a child who struggles with communication and behavioral issues. My son and I have a strong, close relationship and I delight in watching him grow, academically and emotionally, at just his own pace.

But I know that I need to both appreciate our years ahead and also prepare myself — and him — for his life that comes after twenty-one. Just like my daughter, we want him to be able to move on and live independently — which for him, means living with the appropriate supports. We want him to engage in work that he enjoys, to keep exploring his love for painting and coloring, to be out and about in the community with his peers, just as he is now with his family. And we know that creating this life for him will take some work on our part.

Though my son is only eleven, I am taking steps to make a meaningful life happen for him. I meet quarterly with a group of parents (whose kids are 5-10 years older than my son) to process our feelings and share resources about transition. I’m so happy that another group of dynamic parents in the Philadelphia area have started “Families CCAN,” a new non-profit bringing together parents and professionals to create better housing options in our area for our children.

I know that it’s scary for some parents to take that step and imagine ten years ahead for our children, but my belief is that we need to name what we want for our children as they grow up. By working together and insisting that we create safe, appropriate housing communities with meaningful opportunities for work and recreation, we can look forward to the time in our life when our children will leave our homes.

My husband and I know that we will always be more involved in our son’s life, want him to live close by so we can see him every week and drop in unannounced, and that we need to create an operating plan for the time when we age and pass away.

That time feels far away to me and yet, ten years ago, when I held him as an infant on my lap, also feels like a lifetime ago. My prayer for this birthday is to stay in the present, valuing the beautiful life we have, knowing my positive, proactive choices will influence the years ahead.

Gabrielle Kaplan-Mayer directs Jewish Learning Venture's Whole Community Inclusion initiative, coordinates Celebrations! Shabbat family education program and loves working with Helen Chernicoff editing "The New Normal" blog. She welcomes your ideas, fears and visions related to your children's transitions in the comments below.

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