Originally published in the Jewish Week 7/2/2014
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.
While I spend my days working (very hard!) as a rabbi in a large Conservative congregation, I also spend more hours than I ever could have imagined at doctors’ appointments, specialist consultations and school meetings. My days and my nights are devoted to Fragile X advocacy, awareness, and fundraising. Like any parent, I want to give my child the best of everything, and like every parent, I meet challenges along the way. I find great blessing, however, in the work that my son’s condition has propelled me toward, and I am so grateful that this “gift” of a genetic mutation has united my family and friends and helped us to create a worldwide “village” of support.
Fragile X Syndrome is caused by a mutation on the X-chromosome. It is the leading cause of inherited intellectual disability. Every child with Fragile X has different issues; many have autism as well (and it seems there may be a link between Fragile X and autism). Our son is able to speak in 3-4 word sentences, while many children are non-verbal even into adulthood. Our son is very sensitive to new people and loud noises, and is generally quite anxious in new situations. He is learning and developmentally delayed in most areas, though he is very bright and seems to be more skilled on the ipad than I am! Yes, despite his challenges, we are very proud of our son.
I don’t intend to feel stuck in Holland — as it says in the poem, I’m enjoying the windmills, the tulips and most importantly, the community. I’ve made so many new friends — other parents like me who have a child (or sometimes several) with Fragile X and who are figuring out whatever they need to do to help their children succeed. One way we are doing this is by participating in a “Virtual 5K” – a walk/run/bike/stroll to raise money and awareness during the month of July, which is Fragile X Awareness Month. The campaign is called “Let ‘Em Know” and that is just what I plan to do in several ways.
First, the obvious, is to raise money. While Fragile X is often linked with autism (and many of the behaviors might sound the same), it is still different. Unfortunately, while most of the funding for autism research might help some children with Fragile X, it is not going to directly impact them. We need our own research teams, our own drug trials (there have been a few; most were suspended due to lack of funding despite evidence that the drugs were working) and our own support system. Fragile X is a medically diagnosable condition and it should be treated as such by the government and medical community.
Second, we are raising awareness. I want people to know and understand my son and children like him with special needs, and to see his potential and his ability for growth. I want everyone to join me in celebrating who he is and what he can — and will — do. But I also want those who are contemplating having a baby to be able to make informed decisions. Knowledge is power. I didn’t know I was a carrier of this condition when I was having children, so I encourage everyone I know (and certainly every couple at whose wedding I officiate) to get genetic testing. I’m not saying what anyone should then do — that’s a very personal decision — but I believe potential parents should have as much information as possible so they can be prepared.
Finally, I am a Jewish mother, raising my children (both of them) to be proud and knowledgeable Jews. And this does not change because I have a child with special needs. Even in our Holland there can be a love for Judaism and an appreciation for Jewish values and traditions. Our sons both learned the Four Questions for Passover (in Hebrew!) and they both sing the Shema and V’ahavta every night before bed. They love to sing the Shabbat blessings and they attend synagogue with us every week (often joining me mid-week to make the minyan — they are so pious!). We are making sure that our Jewish community embraces our children so that they may embrace our Jewish life. In this way, by living and modeling inclusion, Jewish education and the continuity of values, we are “letting ‘em know” and letting our sons know just how much they are loved and cherished.