Summer is here, and for many, especially those on a school schedule, this means summer vacation! Families often take this opportunity to travel together, have adventures, and spend some quality time together.
Travel is one of those things which is stressful and overwhelming for many people, but until today, I never really thought about the added burden travel could bring when one of your passengers has special needs. What if you have a child in a wheelchair? Or a child with autism? What if your child has a feeding tube? Or has visual impairment? Travel and vacation has just become much more complicated, because in addition to the typical itinerary and accommodations, you now need to research and plan for many other things specific to your family’s needs.
This morning, I was alerted to the existence of a really cool website developed to help families navigate travel with individuals with special needs. Started by a mother of two kids, one with special needs, Special Globe has tons of resources including helpful information from the CDC and TSA, tips and tricks, and even notes about how accessible various attractions are in different vacation spots.
While I know this post isn’t as applicable to most, chances are, you know someone who might benefit from this information. Pass it around! Have a great summer!
I spent last Wednesday morning attending a conference on Rett Syndrome at Einstein. Let me start this blog by saying that Rett Syndrome is not a “Jewish genetic disease.” In brief, it is a neuro-developmental disorder that primarily affects girls, in which they start to develop normally but then lose motor functions and also develop seizures, cognitive disability, and a host of other symptoms (learn more about Rett Syndrome here). Rett Syndrome is caused by mutations in the MECP2 gene which is located on the X chromosome. A friend of mine asked me what prompted me to attend this specific conference, given my current focus on Jewish genetics. I told him that I love to learn, I was impressed by the lineup of clinical and scientific expert speakers, and I knew that a lot of the Einstein genetics people would be in the room. In the end, these factors paled in comparison to what left the biggest impression on me that day—the presentation by Monica Coenraads, whose teenage daughter Chelsea is affected by Rett Syndrome.
Monica began her presentation by showing home-video footage of Chelsea’s first four years. During the first year, there were the typical clips of first smiles, first solid foods, first rolling over. After that…the realization that milestones were not being met, Chelsea’s developmental regression, the search for a diagnosis, the fear of that diagnosis, and then the adjustment to living with the diagnosis. Monica’s presentation continued with an eloquent overview of the syndrome, in which she interposed videos of Chelsea manifesting many of the symptoms. She also showed Chelsea’s educational and therapeutic support teams, and a massive amount of Chelsea’s specialized equipment and furniture. It was clear that Monica has not left one stone unturned in her care and support of Chelsea, in the context of her entire family (and she even brought the whole audience to tears as she described how Chelsea was able to express, with the help of a communication device, that she wanted to attend a prom and then was able to do so escorted by her brother). On top of all this, Monica has made a huge impact on the global Rett syndrome scene, in part by establishing two foundations that fund research for Rett syndrome treatments and cures.
Several of the scientists who presented at the conference specified that Monica Coenraads motivates them in their research endeavors and prompts them to push their creative limits further. From the brief encounter I had with Monica (i.e., watching her powerpoint presentation in a dark auditorium), I see Monica as a source of light. Monica and other parents of children with disabilities and genetic diseases restructure their expectations, perspectives, and daily lives because of these children. Sometimes it takes people like Monica to help us parents re-calibrate with respect to what think we can/cannot handle and also re-invigorate for new undertakings.
May the spirit of Chanukah give strength to parents and caregivers like Monica, as well as shed light upon research efforts aimed at finding cures.
For months I have been meaning to write about the book Mi Dor Li Dor, Genetics and Genetic Diseases: Jewish Legal and Ethical Perspectives, by Dr. Deena Zimmerman (an Israeli pediatrician and yoetzet halacha). The book is divided into 3 sections: information about advances in genetics and ethical issues that may arise, facts about common genetic diseases, and the final section is called “Living with Genetic Diseases.” The book is very user-friendly and is a great resource for beginners in genetics, but what interested me most was that last section. While I see the other stuff in my professional life all the time, what Dr. Zimmerman tackles in the last section is the stuff they don’t teach you in school.
Dr. Zimmerman talks about the challenges of raising a child with special needs. As a prenatal genetic counselor, I often talk to my patients about “what to expect” when a prenatal diagnosis is given-whether it’s a diagnosis of Down syndrome, sickle cell disease, or a congenital heart defect. We talk a lot, I give the parents referrals to doctors and support organizations, and then I say goodbye. I tell them I will be there for them if they ever want to talk, but they never do. But I think about them every now and then, and I wonder how they are doing.
I think that only a parent and family of special needs children can understand what it means. Dr. Zimmerman quotes an essay that is probably the best metaphor I could find about what it’s like when one comes to the realization that while you cannot plan how your child will be, you must appreciate your kids the way they are. The essay is written by Emily Perl Kingsley and its called “Welcome to Holland (see below).”
Ultimately, I have learned through work and through personal experiences that the best support one could get is from those who can say “I’ve been there too.” People in similar situations ‘get it’ and they are probably the best people to vent to and to get advice from. While of course family and friends are critical support, I urge anyone going through a hard time to seek out those have experienced similar things via support groups and word of mouth. It can make all the difference.
As an aside, I just heard about a new UJA project called “The New Normal,” which is a blog about disability that is housed on Facebook. Personally, I am thrilled with the title of the page because it shows recognition that even if someone has a disability, they are still normal. But that’s a whole other blog post…