In our world of parenting a child with special needs, all you have to do is say “Holland” and everyone knows you are dealing with challenging days and lost dreams. As Emily Perl Kingsley expressed in her famous poem, having a child with special needs is like planning a trip to Italy only to land in Holland. There is a new language, new places to visit and new people to meet. Everything is different, but that does not mean it’s bad.
It has taken me a long time to be able to write that — and truly mean it. And while it is still painful to realize we are in "Holland," having a 3-year-old son with Fragile X Syndrome has inspired me to be a better mother and to become an advocate for his needs and the needs of other children and adults with this genetic disorder.
We are both deaf and we both know no limits. It is the greatest gift you have given me as my father. As a young child, I watched you coach a deaf water polo team and a deaf basketball team, collaborate with the early stage technology institutions to help bring the internet and computers to the deaf community, raise funds for the nation’s deaf youth, and co-found the nation’s first and only deaf owned manufacturer of assistive technology products for the deaf and hard of hearing with Mom.
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.
After Moses anoints the Tent of Appointed Meeting and the Priests who will officiate there, God speaks to him:
Explain to the sons of Israel the ways of bringing offerings to God. There will be offerings of animals and grains and fruit. Animals for sacrifice shall be male and without blemish. These animals shall be killed and washed and burned so each shall smoke on the altar in the Tent of Appointed Meeting. This will be for an ascent offering, an offering made by fire in expression of compliance to God and to make atonement before God.
Raising a child with a disability is overwhelming. My daughter was three and a half when I finally received her Autism diagnosis, but she’d been in early intervention therapies since she was 8 months old. PT, OT, ST, ABA, AVB, etc.; we worked our way through the therapy alphabet.
With the summer approaching, many parents have spent the last few months planning activities for their children. Some families choose to send their children to camp or specialized programs. Finding appropriate activities can be especially difficult for parents of children recently diagnosed with any special need. Parents should not feel as though they are going through the process alone, however, because there are probably mothers and fathers in the community who are eager to help.
As awareness grows regarding a number of disabilities, such as autism and sensory processing disorder, people are talking. Often, they’re talking to the parents who are raising children who struggle with these issues, and they’re offering comments such as, "I don’t know how you do it."
Although well-intentioned, those comments aren’t always well-received.
It was a tough week on the news ticker for parents. First came the heinous attack on an Israeli tour bus in Bulgaria, followed only days later by the incomprehensible tragedy in Colorado. Questions of how to talk to our children about these headlines have weighed heavily ever since.
I just got back from Israel. I went as a kind of pre-state pilgrim, but the circumstances and the trappings of the trip were hardly old-fashioned, or pious. My ever-generous in-laws wanted to show off their grandchildren at a wedding thrown by olim relatives, so the grandchildren’s parents got to come along.