“Friends are the family you choose,” my parents would often say when I was young. As we moved to New York from Buenos Aires, those words became so incredibly real to me. Being away from my relatives made me look for that warmth and closeness in other places, and as my parents predicted, I found it in my friends.
As a sibling of a child with disabilities, it was always my “job” to be guarded, and to vet every single person that we met. This was a responsibility that I somehow assumed for myself and took seriously. This meant that it was always difficult for me to have a large group of friends. I always preferred a small, but remarkably close group. I was always protective and picked my friends wisely.
My lucky stars must have aligned the day I met Nelly, a September morning in 1997. I probably should also thank our daughters, Iliana and Carolina, for having sat together that day in kindergarten class! Needless to say, that spearheaded a friendship that would stand the test of time. But through all this time, there was something that really stood out about Nelly, who became like a sister to me, her daughters Iliana and Ivana, who are like my nieces, and their late husband and father, Anibal: Their ability to understand my brother, love him for who he is, and the desire to be of service to those like him.
I really have no words to express my gratitude to them. They allowed their love for my brother to serve as a guiding principle in their lives. I never had to pretend to be anything around them. I could be myself. I could express my doubts and my fears. And most important of all, I could blindly trust them with my brother’s life. After all, they designed their lives around children and adults with disabilities: Nelly, Iliana, and Ivana all work in the field, in different capacities, and make a huge difference in people’s lives daily.
And when I say they make a difference, I really mean it. They really, really do. They all participate not only in their professional capacities but also bend over backwards to advance the rights of people with disabilities around the world. They fight for access and inclusion in every area of life. They do this because of their love, commitment, and passion for what is right.
Nelly, Iliana, and Ivana, thank you for being who you are, and for your respect, love, and dedication. I am proud to call you my FAMILY.
The other day my husband and I were preparing for the upcoming holiday season. Yes, I know what you are thinking. The summer isn’t over yet, and we are already talking Holidays?! Let me explain. Our combined family is large, and I’m not only talking about our wonderful immediate, blended family. I’m talking about all of what that implies: my family of origin, his family of origin, my daughter, his sons, their families, our foster daughter, and their respective families. In addition to that, we both have the “package” of a previous family. As you can probably see now, there is a great deal of planning required.
One of the factors that goes into planning for this type of get-together is the fact that my youngest brother, Fernando, who is now 40 years old, is an adult with developmental disabilities. Why is this a consideration? My brother is an adult in many ways but cognitively, he behaves and sees the world more like a 2-year-old child would. He claims spots as his own (for example, the couch in front of the TV), does not want to share (don’t even think about taking his remote control), and can watch TV for hours! (dare not change what he’s watching!). In addition, he still needs help for certain activities of daily living that most of us take for granted, like going to the bathroom or eating a full meal without spilling anything or staining his shirt.
This is a huge source of stress for my mother, who in a way,
sees herself as the perpetual mother of a toddler who just happens to be really
big in size. This is, of course, a major
consideration of when, where and how we plan our events. Hence, the need to plan for Thanksgiving well
in advance, especially when huge family crowds are expected.
As I thought about Thanksgiving and how to make it comfortable for everyone but especially for my mom, I was reminded of the winding road that brought me to this place of kindness, understanding, and non-judgement. The road that brought me here was a surprising contrast. It took me quite some time and some tears of my own to understand, really understand deeply and without judgement, what it means to be the parent of a child with disabilities. No matter how old that “child” is, he/she will always be a child for those parents.
This year my mom and brother will be in town for Thanksgiving, as they normally are, and like many years before, we will be flooded with well-intentioned family members and friends, that will want to celebrate Thanksgiving at their home, and I will have to explain, one more time, why this is not a good idea. I will feel bad saying no, and they will not understand why, even with their kind offer of giving up a couch, a TV, and even a remote control to my brother, I’m still saying no. The truth is I totally understand their perspective, but I deeply understand my mother’s too.
Here is some advice and wisdom that may help the lay,
well-intentioned person, family or friend, understand their special-family
Special parents feel judged. If you take away just one piece of advice from this piece, please let it be this one. Special parents always feel that the world thinks it’s their fault. Parents typically experience feelings of guilt when things go wrong in their children’s lives, when they see their children suffering. Somehow, parents think if they could only…(fill in the blank). And to top it all off, I have heard many well-meaning family members and friends inadvertedly judge those they love by pointing out that things could be better if the parent just did something differently. So when you feel like your friend or family member is not listening, has put up a wall, or is rejecting your advice, remember that this parent may be receiving the feedback as a judgement. Be patient and understanding. Ask the special parent how it feels. Let them tell you what is like to be in their shoes.
Special parents feel most comfortable in their own environment. We all in one way or another can’t wait to “get home” at the end of a difficult day. No matter where home is, it is a symbol of rest, peace, and individuality. For a special family, the role of this special haven cannot be underestimated. Their environment may be accessible and may have accommodations that make life easier for the special family. When they say they prefer to meet at their place, understand that they may not be rejecting your invitation, they are only asking for an accommodation to be able to enjoy themselves a bit more freely.
Special parents feel misunderstood and isolated. Feeling misunderstood is a consequence of feeling judged. This is a particularly serious feeling as it may lead to depressive thoughts and the consequence of not only feeling isolated but becoming isolated. If you have a special parent in your life, pay attention to these feelings.
In short, my advice for all of you out there, friends of our very special village, is that if you have a family member or friend who is a special parent, please be there to understand, support, and lend a hand. Should you still say what you think, give advice, and lend your opinion? Of course! Your relative/friend really needs you, all of you. But just be aware of what may be happening behind the scenes, so that you can be more present and more whole to support your friend.