I am a mom with lots of special needs.  

I’m irritable, exhausted….with an extreme sparsity of emotional energy and nothing positive to discuss. I feel all alone at time, charting unmapped territory.  It’s as if I’m a early frontierswoman, navigating this new country with merely a good horse and load of chutzpah, no road map or directions, no course of navigation set before me. The well being of these humans is somehow placed squarely on my shoulders.  While no one does it alone, it often feels that way.  I admit, I took it all on, ran head on into it, surely sure of myself as if for sure I knew what it would look like, raising special needs kids, hell any kid these days. It was all pure bravado, youthful fearlessness, tempered with a pinch of spite born of desperation.  I have often felt that lingering bit of contentious motivation, that of, “think I can’t manage all this and my other parenting, partnering and personal responsibilities??  Yeah?  Just watch me….”  and that is the facade that has been slowly crumbling over the past year yet here I stand, steadily enough, with the power to reflect, understand and now say, I still don’t know much.  It seems trite but true, that the more I understand about how to navigate in these tumultuous, tempestuous times of doubt and uncertainty, the less I know.  So, before I forget why I’m writing this blog, because I have to remember something else, here’s what I know today.  Use it if you can.

 Just bust out. And run. Or walk. Or something, just break a good sweat.  You’ve got to move it Move it! Most every morning, I bust out for a run.  My best suggestion for this is to make it a daily practice,  commit to it.  I unplug, break a sweat, get out of or into (depending on need) my head.  Some days, I’m all Eckhart Tolle and Ram Dass podcasts but others are ac dc-Highway to hell, run flat out as hard as I can.  I’ve noticed controlled physical exertion induces a sort of release of deep emotional pain.  The kinda angst that some of us special needs mom, sometimes have.   Forced focused attention. Meditation? Yes. I find if I don’t make time for this most days, I suffer.  

Work together.  With everyone as much as possible.   Include all medical professionals, social workers, IEP team. ISP team, and any other caregivers such as respite workers, mentors, extended family members, exes,  etc, in communications.  I’ve found group email to be an effective tool, if properly used, to communicate among the mass of professionals caregiving a TSC kid requires.  Google surveys are another way to glean and share pertinent information with a particular population. What’ I’m finding is that the lack of communication between professionals working with our children is phenomenal and proactively fostering communication between them at times feels like reinventing the wheel.  This is one of my biggest beefs as a parent and caregiver and I don’t really think there’s anyone to even blame so creating tools, looking at my processes, getting organized are things I can do to avoid the pitfall of feeling like helpless and overwhelmed.

 Ask for help.  I really dislike asking for help.  I was going to say I hate asking for help but hate’s a strong word.  What I dislike is the vulnerability involved.  I find this a bit ironic as any successes I have had in bridging the communication gap, gaining new information, making new connections has only been because I did exactly what I dislike, that is, I reached out and asked for help.  Ugh.  It hasn’t been that bad only that I have to keep doing it.  I thought maybe I’d get to a point in life, in parenting, in special needs parenting, etc, where I would really know enough to not have to ask, but dammit, over and over again, I must.  As I’ve gone along, I’ve found behind what often seems like a closed door IS a closed door because these agencies that I’ve had to rely on to get the services needed for my children often don’t communicate very well either.  But I persist and am slowly learning some of the ins and outs of what and who to ask, where to look, etc.  

Laugh.  Hard.  Great big belly laughs.  I was going to say cry too, and I mean that, don’t hold emotion back.  Laugh at yourself, your situation, your facebook feed, Donald Trump…. gallows humor or political humor. Sponge Bob or South Park.   I pray daily for the light of laughter to fall upon me in my most excruciating moments of self doubt and fear.  It’s the letting go, and knowing that it will come if you make room, open the window and let your funny bone be tickled.

I will say all this is exhausting.  I want to be more positive but I am frustrated.  It is a black mirror of what is going on in our country as a whole, this fundamental disconnect within our healthcare, social services and behavioral healthcare systems is just another symptom of a fragmented and confused society.  While technology and modern medicine have brought many beneficial new treatments, I still believe we must find way  to use these advances in  medicine and technology  to integrate all systems  needed by our special needs population if we are to honestly embrace progress.  If we cannot prepare this part of the population when they are young and give them whatever tools they are able to access at their respectful levels, while preparing them for as much independence as possible, we are doing ourselves and society a disservice and the burden of care will be a continuing mounting concern . We must work to find a place to build a society where everyone fits, everyone contributes and everyone has a chance, any less is an inhumane response.  That is how this special needs mom sees it.  Let’s get going.

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