Who hasn’t looked around and taken an unwitting inventory of their lives; which parent of a special needs child doesn’t do this on a regular basis? In the back of our minds, on days when all seems in order, along with days of disarray, do we not consider which direction we’re going, how many dreams have been reached, mended, rearranged or forgotten? What will our next steps be? Who is in our ventilation system? What supports do we have?
And there we have it. Our supports. Family? Other parents? Other parents of special needs children, neighbors, friends?
Our friendships are probably the hardest to count. The hardest to consider. All around us, in a constant state of flux, it seems our friends and our friendships have changed dramatically. Many who surrounded and supported us through our ‘previous’ or ‘normal’ life may have all but disappeared.
As best I can recall, we thought it was a slow death of friendships, but in reality it was within a head spin. After J’s initial diagnosis, eyes still in a stare of disbelief, we found ourselves robotically picking up, dusting off and beginning the navigation of what was to be our life. Looking up and finding that not many people were standing with us left us feeling beaten. Some wanted to understand, to be involved, then shrugged with the lax of non-investment. Some family spoke in concern, yet displayed ambivalence and disinterest, finally making their distance. We were left with very few supports, very little understanding and an invisible roadmap to a place that shared no resemblance of our initial dreams.
Familiar? Most of us share a similar story of the blossom of our travels. As the road crumbled, forked or waved (depending on your perspective), silhouettes of friendships we held softly, sometimes abruptly, disappeared. We thought they were there, their presence of security and camaraderie beside us until we took a focused look in their direction and there was an open space…a void.
Fast forward. Now working at friendships becomes actual work. The difficulties of letting anyone in, not from embarrassment, rather the exhaustion of starting a new relationship with someone who may be unable to fully understand what it takes to be involved with your family, who may turn out to be judgmental, or who may very well just find it easier to let you go…or in all honesty, you find it easier to let them go.
Finding a friend (or potential venting source) also means attending gatherings, educating on what that looks like for your family and how it could integrate (nor not) with theirs. Quite frankly, there are sometimes you don’t even know that you can muster the courage strength to do a get together until the day it happens. It appears flaky, indecisive, uninvested.
Other times, you know there’s been too many “we can’t(s)” and “maybe another day’s” leaving you to grit your teeth and attempt transitions and integrations in the best way possible. Enough replays of watching friend’s faces, stunned and awkward silences, and less contact until the friendship dissipates, and you begin to close off to the possibility of friendships. It’s disheartening to put all the time and effort into a relationship when experience tells you it will falter in the end.
These relationships are vital. They’re testing grounds for life’s outlook. They’re bond-building on the commonalities of being a parent, being a wife or husband, in being a woman (or man). You may find someone who enjoys finding just the right spice for a favored dish, or finding that perfect bottle of Merlot. Someone who enjoys writing, reading, skiing or walking to get some fresh air. It may be someone who gives you insight, a different perspective, or you may be the guide they need as they begin their ‘normal’ or ‘special’ journey…the commonality? All life’s journey’s are special.
As time goes, as you become more accepting, comfortable and knowledgable with the way your family will interact with the world, in how to help your children navigate the waters before them, you will become more comfortable and confident in yourself and the friendships you will allow and open up to in your lives. People you come to know will, in a short time, ascertain that to be with your family, with our families, is to accept all that we have to offer. To allow themselves the opportunity to enrich their lives and share in our special journey.
There are people who are interested, heartfelt in their desire to befriend and understand us as individuals as well as a special needs family. Whether sensory processing disorder, cerebral palsy, fragile-x, autism, down syndrome…a combination of or another disorder is what our lives hold, there has become more understanding, awareness and acceptance of our families in the world. Not everyone is an adversary; not everyone a saint, but someone will understand.
Online friendships are nothing to scoff at. There has been more than one time the support I receive in blogs, comments, email or twitter has kept me afloat. A similar bond, a similar circumstance. Other parents whose children are in a special education programs with yours, neighbors, old friendships rekindled…
If there is one thing I can leave you with as we begin to look towards the New Year, it’s this:
The friendships we need will come when it’s right. Forging the lifelong bonds with other parents that will follow through the school years, those which help foster our children’s friendships giving them support they can rely on when it gets tough to be a kid with differences…will come. Possibly not an overabundance, but in just the right amounts. We will meet other parents with children that closely resemble ours, whose struggles seemingly overshadow ours or match in eerie detail…we may bond with them, we may move on, or we may be unable to reach out or accept friendships as the duties we are charged with have become heightened in priority.
The times of our isolation are necessary, clear in hindsight, and will pass as “that time”. Know that when we’re lonely, feeling isolated, misunderstood, the support we should thrive upon can be in that single passerby and their nod of acknowledgement. That dad you find yourself sitting across from while waiting for therapy’s end…their ‘knowing’ expression. The compassion that passes between you. The support that can come from that one person before you in the grocery line who feels the difficulties consuming your child and steps aside, allowing you to go first.
Conversely, there will be times when your social plate is full of those who want to understand, help, or find no difference between your family and theirs, gladly accepting all you bring and all that your family offers.
Every thing has it’s place. Every being has their purpose. Every person who is in our lives, has left our presence or is making their way to our future unseen leaves their fingerprint upon us, and we upon them. The relationships we will thrive upon, learn from, will come to us when we need them most. Being open to them is the first step.
As New Year’s Eve is my favored holiday, my favorite time of hope, perspective, of priorities renewed, I believe that if we all are able to open a little, allow a little room for possibility, for a true, caring, safe and righteous friendship to be formed, we may all fill a void…the void of the space left open for another to fill.
I am honored to be closing the first, “First Things First” Series”. As your New Year moves along, and your life shifts in the flux only a special needs family can, I would encourage you to revisit each post. You may find a different meaning in your favorite writing or one you quickly skimmed. What seemed insignificant before may become too familiar; what was your focus may be passing snowflake in the winds that have changed.
Life has a way of changing your perspective and it is the hope of each of the contributors that we could shed some insight, pass along resources and leave you with a sense that we are all sharing in the journey. Most importantly, to do what we must, we must take care of ourselves…First.
Wishing you a Hopeful and Happy New Year.