Dear Parents of Children With Special Needs -- From a Sibling


Dear Parents of Children With Special Needs,

First and foremost, I want to thank you. I believe all of you are doing absolutely everything you can to attend to and nurture your family — every last member of your family. I also believe your dance card is incredibly full with all the challenges that come from having a child with special needs: a new diagnosis, new treatments, medical interventions and therapies. So much. Truly a full-time job. As a sibling to an older sister with brain damage, my heart is filled with awe and admiration for all you do.

unnamed (62) I’ve read in your blogposts and comments how you’re raising your little ones with tremendous love and support for one another. That’s a beautiful thing. I’ve read that you found in your children great empathy and compassion, love and acceptance, patience and understanding. I’ve read how proud you are and how you see so many good qualities emerging in your children. You attribute these values to having a child with disabilities in your home. You say your children are learning from their sibling with special needs. And in a way, that’s true. 

But more, they’re learning by watching you, dear parent, as you stoop and wipe and lift and carry. The love you have for your child with special needs is evident to your other children. And because a child’s first teacher is their parent, they also learn to stoop and wipe and lift and carry. 

Your watchful eye focuses his watchful eye. Your gentle hand shapes her gentle hand. Your placing your child with special needs before your own needs is template for how his or her siblings will personify compassion. Because your love is the most important thing in your children’s lives, they will make themselves extensions of you. You don’t ever have to ask. They will just know. 

However, you should also know that the beautiful compassion and empathy siblings have for their sibling (and for the world) is at first solely directed at you. We first feel compassion for you as we see you work and love and attend. We first express empathy for you as we take up what jobs we can to help with the task at hand. And we first learn patience for you as we sit quietly and wait. You see and appreciate us directing these qualities toward our sibling, but please know, it all starts with you, with our deep and abiding love for you. It is our first and deepest expression of love. 

As we grow older we learn that we love our sibling for many other reasons: their laughter when something pleases them, their off-key singing, their penchant for rapid-fire recall of every detail of some battleship, their goofy way of repeating jokes over and over and over. So many things will bring us to love our siblings for who they are; but we first love them and care for them because you do. 

I know many of you have found support groups of other parents with whom you can share your stories. You have your partner-parent to act as soundboard to your frustration and feelings of guilt. You’ve found therapists who help you process a sudden diagnosis or a surprise in the delivery room or the mounting fears of raising a child with disabilities in a society that has yet to support the differently-abled. You have friends with whom you cry. And you have blogs where you can share inspiration, rainbows and silver linings. All these feelings you share with others are also experienced by your typical child. I want to repeat that because this is the crux of my long letter: all the feelings you experience and share with your therapist, best friend, support groups and spouse are also felt by your typical child. But many siblings have nowhere to go with all these feelings. I believe my younger fellow siblings deserve the same benefit of community and empathy for the whole of their experience.

We all need a witness to our lives, someone who validates our experience and helps us see that it’s OK. “I get it. Me too.” Parents can do some of this for their children. They can give a little smile or a brief wink as if to say, “I know, honey. This is one crazy day! But we’re in it together, OK?” And there are times, especially in the thick of your day, when you may not see how hard or how scary or how frustratingly infuriating it is for a sibling. How could you? You’ve got just two hands, and they’re so often full. And many times your young one doesn’t know what it is they’re feeling. It’s all so mixed up: the guilt, the expectation, the love, the desire to help, to make it better. They don’t have words for so many of the feelings jumbled inside.

To help your child process all the same feelings you are experiencing, here are some resources.

Consider visiting The Sibling Support Project (http://www.siblingsupport.org) which is dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental or mental health concerns. On this website you can learn about Sibshops, which are events geared specifically for siblings, where games, new friends and discussion activities help us acknowledge that being the brother or sister of a person with special needs is for some, a good thing and for others, a not-so-good thing. For many, it’s somewhere in-between. There are also lists of books by and about siblings, books to help parents learn about sibling needs and books for young siblings. And there are links to Yahoo and Facebook support groups for kids and teens. None of this support blames parents. All of it can be life-affirming for a sibling.

Human beings are all so amazingly creative, as we weave stories and themes that help us make sense of our experiences. Growing up in any family means we share some facts about our lives, and I think of these facts as stars. How a parent with vast experience and perspective sees the stars will be different than how a child sees them. We may share a night sky filled with stars, but we alone connect them into our own personal constellation. 

So I ask you, what if we could learn to listen and hold the entirety of each other’s stories complete with clouds and silver linings, storms and rainbows? Your children have their own stories to tell. And like any story, it’s filled with quests and bravery, trial and tribulation, glory and celebration. They will need to find others who share similar stories. And they will need you to acknowledge and validate it. I know you’ll want to hear it. It’s epic!

Please feel free to comment or question; this is a conversation. I truly believe we heal by telling our full stories to one another. And I hope we can all do so with hearts filled with empathy for each other and our respective journeys. Our stories don’t have to be the same for them to be true. If we can look upon each other with compassion and as fellow family members of a beloved person with special needs, maybe we can learn from each other’s experience.

I wish you all courage on your path and comfort along the way.

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