written by Jennifer Iannuzzi

On the eve of what will be a race to the holiday season I have a few thoughts…

First let me take a step back. The day that we received my daughter Sydney’s special needs diagnosis I was flooded with negative thoughts, fear, and sheer panic. But the one thing I remember saying to my husband while we were sitting together trying to collect ourselves was this:

The world spins in one direction and now we are destined to spin in the opposite direction and never be with everyone else. Our “special” gravitational pull will always keep us in a separate (but not necessarily worse) orbit. 

Yes, I know, not very articulate and probably a bit dramatic, but truthfully, I was, in retrospect, not far from the truth. I had that thought just hours after learning Sydney had Smith-Magenis Syndrome (SMS). I then spent YEARS trying to deny that it was true. But it was an undeniable fact.

Holidays are just not the same for us. I want to participate and enjoy and embrace them like everyone else, but I simply can’t. Holidays, weekends, and breaks from school are by far the most difficult and stressful times for our family. While Sydney wants to be a part of it all, the excitement, the change in routine, and the celebration, it causes too much anxiety and as a result enhances her behavioral issues which prevents her (and us) from truly relaxing and enjoying what should be quality time-off.

The last holiday we hosted for our extended family was in 2018. Overall, Sydney did well but truth be told so much had to do with the set-up of the day. To keep her calm and organized I kept her out of the house all morning. I kept her far away from the chaos of the setup and the prepping for the day ahead. Sydney and I returned after the guests arrived. The meal went well but she was obsessed with the idea of shopping with her grandmother so at 4pm they left together. Unfortunately, Sydney had a very significant tantrum in the car with my mother – one that will not soon be forgotten.

My mother was in her 70’s at the time. She had been living with and surviving lung cancer for almost 20 years which was essentially unheard of according to her physicians. She received chemotherapy, radiation therapy, and whatever else she needed. My mother came every weekend  to help us orchestrate our life with Sydney – an extra set of hands. While she was still very young at heart Sydney can and has given her a run for her money. My mom kept coming. She was the true epitome of unconditional love and support, and no one has displayed more of that for Sydney than her.

So here they were, my mother and Sydney out of the house on a frigid dark Thanksgiving eve and Sydney lost her mind in the car. She grabbed a hold of my mother’s hair while she was driving and yanked a decent chunk right out. When they arrived home, Sydney was in tears apologizing to my mother and desperately trying to fight that SMS demon that plagues her. My mother showed us the hair and I was just devastated. It literally made me sick to see. My mom then said to us, “Well all that chemo didn’t get my hair, but Sydney sure did.” We just laughed for a long time. Sydney eventually collected the disorganized pieces of herself and put them all back together and managed to have a lovely end to her Thanksgiving holiday.

What I have learned over the years is that being successful at managing tragedy in your life comes down to three important things...attitude, perspective, and a keen sense of humor. I have my breaking points but what living special needs has taught my family is that strength is most certainly a matter of the mind made up, humor is essential for survival, and each and every day we grow more resilient. 

These are the true gifts that matter most during the holiday season.

Lesson learned:  

Yes, we stopped hosting our larger extended family for the holidays and yes, that was difficult and can still seem painful at times. Frankly we see it as a WIN. We finally realized what was best for our small group and our special situation and we pivoted to maximize our enjoyment, however limited. We still see our family, just under different (non-holiday) circumstances.

 Make guilt free adjustments that work for you and your family.

Happy (Tolerable) Holidays!

Jennifer M. Iannuzzi is the co-founder and president of the SMS Research Foundation. Her daughter Sydney was diagnosed with SMS in 2007 at age 2 when she was found to have global developmental delays. She noted a paucity in the amount of clinical research being performed for SMS and felt that an organization was needed whose sole purpose was to further the progress in SMS.
Jennifer attended Clark University in Worcester, MA. She completed her master’s in social work at NYU in 1993 and began working at the Staten Island Mental Health Society. She provided therapy to children and their families. She then worked at a day treatment facility in Westchester, NY. This population better suited her interests as these children had more intense special needs. Jennifer spent the next four years working with a multidisciplinary team to provide individual, group, and family therapy. She left in 2001 after the birth of her first child to devote her time to being a full-time mother.
Jennifer is passionate about re-defining what it means to be a parent of a special needs child. She is an active blogger on her Living Special Needs (https://livingspecialneeds.com/) site and has written nearly a dozen blogs with brutal honesty and insight sharing her unique perspective with the community. One of her blogs “My days of counting are numbered” was published in the Journal of Genetic Counseling in July 2012.
Jennifer is currently a licensed Clinical Social worker in the State of Connecticut and currently has her own private practice that specializes in working with families Living Special Needs.
Jennifer resides in Wilton, CT with her husband, Chris and three children: Ben, Cole, and Sydney.