Wednesday, January 29, 2020

They Are Not All Your People

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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.
Not all special needs parents are on the same team anymore.  And I can't tell you the exact moment of that epiphany for me, I just know it to be true.  Mommy wars are exceptionally vicious these days, support groups have turned into who knows better, who knows more or even a dictatorship on how you should parent your own child, the therapies you should be doing, the treatments you should consent to.  It's often clicky, immature, hostile and unkind.  And trying to manage these really aggressive personalities puts me in the line of fire more frequently than I wish it did. I learned the hardest lesson over the course of the last couple of years. And although it's not something that should be discussed in the context of Noah's blog, it did stem from the belief that I had that all special needs parents were inherently good, and if there was something "off" that I'd chuck it up to typical special needs parenting stress and strain.

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.

Our 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.

Just 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.