Now that my kids are grown, I’m no longer caught up in the holiday frenzy of finding eight perfect gifts for Max and Sarah or lighting the menorah with them. In retrospect, the image of Sarah squabbling with her brother over who would light each candle, or her determination to drown everyone else out with her superior singing voice is sweetly—and unexpectedly—funny. And how can I help but smile when I remember Max shaking and scrutinizing each gift box, trying to figure out if his heart’s desire was inside? For Sarah, gift giving was far more complicated. In her early years, she had few interests and didn’t care about ANY gifts. Playing with the ribbons or shredding the wrapping paper was her passion until age eight or nine when Sarah finally developed an interest in jigsaw puzzles, knitting, crocheting and making beaded necklaces. At last, I had the pleasure that most parents of neurotypical kids enjoy: watching my daughter’s eyes light up when she looked inside the boxes. But my joy ran deeper. For years Max had wished that his twin sister would enjoy opening gifts and share the fun. Finally, that wish came true.
Nowadays it’s a lot less fun running around to satisfy the holiday hopes of doormen, handyman and porters, especially if you live in a full-service apartment building like mine. Others who inhabit our lives and expect gifts are assistants, manicurists, nannies, hair dressers, mailmen, newspaper deliverymen, garage attendants…well, you get the idea. What this means is a large withdrawal from my checking account, stuffing multiple envelopes and distributing them as I smile and say “Happy Holidays” (whether or not I’m happy).
But what about a holiday wish list for autism moms? Most of us are spread so thin taking care of our children with autism AND everyone else that we can’t sit still long enough to make a list. Now that my kids are turning 25 and almost out of the family nest, here’s my list for all hardworking autism moms.
- A massage or beauty treatment at a spa. Preferably multiple treatments or a full day. Once a week pampering would be ideal.
- A reliable, competent and compassionate life skills provider for mothers of older kids on the spectrum. Same three qualities would be necessary for a babysitter of younger children.
- More and better educational opportunities for all ages.
- A musical theater group and paid employment for talented performers on the spectrum like my daughter with perfect pitch.
- All kinds of vocational training and job opportunities—not limited to computer programming, administration and clerical work which are considered “boring and repetitive” by neurotypical employers.
- Special graduate programs for young people on the spectrum who manage to graduate college.
- Training programs for airport personnel, policeman and doctors on compassionate and effective interactions with people on the spectrum.
- More housing options for higher functioning people on the spectrum, like Sarah, who are capable of greater independence, but need some supervision.
- Less red tape to obtain the services and support our children of all ages so desperately need.
- Tax deductions for parents who have poured a fortune into doctors, therapists and special education.
- Payment to mothers and other caregivers whose children on the spectrum require full time support and make other full-time paid employment impossible.
- Therapy—either government subsidized or covered by insurance—for autism moms. Ideally, these therapists should be fully educated about the challenges of raising a child on the spectrum.
- Equal funding for support of adults on the spectrum who are already alive and on the planet to the research dollars we pour into discovering what causes autism in the future as- yet-unborn babies.
- A nice, long vacation. That means being able to leave home with an autism-savvy Mary Poppins to accompany a young child, or leave behind a teen or young adult with someone capable and trustworthy.
- Entertainment and restaurants geared to families with autistic children. Given that 1 in 45 children are now born on the spectrum, businesses catering to this population should thrive.
- Passage of the ABLE Act (Achieving A Better Life Experience) in New York, enabling our kids with autism and other disabilities to work and save for their future, just like others who use 529 College Savings Plans. This legislation has passed in 30 states, but New York is NOT one of them. (Governor Cuomo, listen up).
- Clothing and footwear that is durable, comfortable and devoid of tags and irritating seams. Anything simple, soft and with easy closures.
- For every child on the spectrum to have at least one real friend.
- For every parent on the spectrum to be treated with kindness and compassion by educators and parents of neurotypical kids.
- For all neurotypical kids and their autistic siblings to learn to love each other, instead of feeling jealous and resentful.
- For my twins who live on opposite coasts to somehow grow closer during my lifetime….
Yes, I know my list is mostly unrealistic and impossible (except for the massage and beauty treatment). But just having enough time and peace of mind to be able to create MY wish list is an extraordinary gift. Who knows? Life is full of surprises, and one or more of the items on my wish list might just arrive before this holiday season is over . . .