Years ago when I started a handful of special needs parenting support networks and sites it was a different world. The social climate was very different. I'd blindly take on strangers onto my personal social networking. I believed if they found me whether that be through mutual friends, Noah's blog, or social networking or my various groups and sites that they'd find commonality, advice, comfort and assistance. I figured if you had a child with a disability you were naturally a part of my tribe.
But, I was so wrong. Just because a person has a special needs child,
doesn't automatically qualify them to be a part of your tribe. To
automatically deserve to be in your inner circle. I had to learn this
the hard way. First with little slow lessons. The occasional
off-the-wall special needs parent that went rogue and decided to post
inflammatory and intentionally agitating remarks, some that
intentionally came to peaceful places to instigate drama and conflict.
Some can't get past a very now competitive nature, a sense of jealousy
over who's child is doing better. I naturally give people too much
rope. It's in my nature. My very DNA. You see I've been that type of
too loving, too forgiving, and too trusting rather my entire life. And
when Noah came along perhaps those personal traits actually grew
stronger because then you start reinforcing it all with not wanting
others to have to go through what you went through you leave yourself
even more open. So you fall into a roll of the rescuer, the confidant,
the advisor. Many times I'd even put others ahead of my own interests,
my own well-being, my own set of life's circumstances if I could aid
another. I didn't need thanks, I didn't need any kind of affirmation - it was just more of me knowing I
was making a difference in some way in another special needs parent's
life. Or at least I led myself to believe that. I'm sure in many cases I
was simply used a stepping stone for a lead of help or avenue.
You can't assume that all special needs parents are going to be "your people." Not all of
them have good intentions, not all of them are on the same playing field
as you are. And no matter how much you wish to save someone from
themselves, you simply can't. And I wish I had understood that much
earlier on. If you find yourself in a situation where it feels very
much one sided, that this support isn't a two way street, the comradery
feels a touch sour, or abusive, or alarming, you have to realize that
these parents regardless of having a special needs child aren't a part
of your tribe. To hold them in a close space could be detrimental and
even dangerous to your overall well-being and safety.
personal space as special needs parent is often fragile. I refer to us
a bit like the walking wounded. We can function as if we've got it all
mastered; the sleepless nights, the insurance battles, the fight for
services, the lack of benefits, the financial strain, the worry and fear
about our child's life expectancy, watching them struggle, watching
your entire family struggle. All of that can leave us with a
vulnerability. We can have that door cracked even so slightly for
another special needs parent to have the power to make you feel small,
powerless, and find a way into your life that they shouldn't have
otherwise been entitled to.
because someone has the same dynamic that you do, that shares the
journey of having a child with special needs, doesn't give them
exemption from filling out that invisible application to see if they
have earned the right to be a part of your inner circle. Don't just
accept applications because you're lonely, because you feel like no one
cares, or because you need that desperate virtual hug from another
person. Chose your applicants wisely. Know if they are worthy of your
trust, of your care, your concern, and likewise if they have the very
potential to be there for you too. Special needs tribes and friendships
should be a two way street. Don't be afraid to ask for some character
references. If someone sends you a mutual friend request, ask another
friend is that a good person? How are they with you? Do you even know
them all that well?
Protect your space. If someone comes at you or rubs your wrong, follow your
intuition. Block, unfriend, do what you need to do to protect that safe
space. You don't automatically have to keep someone or be friends with
someone just because their life mirrors yours. Not all special needs
parents will be your people. Pick your tribe carefully.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.