ramblinjaq

without a definite route

squeaky wheel

on December 6, 2010

when i had my babies, the world of information opened up about pretty much everything i could imagine. baby has green snot? stomach flu? potential head injury? ask dr. sears. problems with nursing? sleeping? baby acne? if someone in my community didn’t know, you can be sure that someone on the internets did.

the same is true for developmental milestones. a multitude of websites exist to inform parents if their child is right on track, ahead of schedule or falling behind. the bright and shiny world of information turns dark and unfriendly when there is an actual issue. neighbors want to ease worry, saying things like “boys are usually slower” and the google becomes a scary scary place when a child doesn’t make eye contact, crawl, walk, talk when they are supposed to.

since emmit’s first seizure in january 2009, when we learned that his “boys are just slower” delays were caused by a dandy walker brain malformation, information has come in fits and spurts. since dwm is relatively rare, there isn’t a lot published about it outside of medical jargony articles and there’s not much of a community to belong to. there’s no pamphlet entitled “here’s what it means to have dandy walker” or “dandy walker and you” or “how i learned to stop worrying and love the dandy walker.” i’ve had to work for every scrap of knowledge. by work i mean, ask questions. by ask questions i mean, research without getting freaked out and figure out what questions to ask and get over the concern of bothering doctors with random phone calls.

over the last several years, i’ve recognized the necessity of becoming the squeakiest wheel i can be. i’m still learning how to do it. unsure and scared, parents of special needs kids have to ask questions and ask questions and ask questions some more. it’s not easy. i didn’t even know what questions to ask and a lot of times i was terrified of the answers. at one point, i asked emmit’s pediatric neurologist something i knew, but desperately needed an official to say: do seizures kill people? the simple answer is no; someone having a seizure can be in danger of other things like hitting their head or drowning, but the seizure itself isn’t a killer. i actually got choked up as i started speaking, but pushing through the fear of the words eased my anxiousness about the seizures. just a tiny bit, anyway.

once i found the tiny shimmer of understanding about emmit’s physical and developmental issues and progress, i also discovered the never-ending paperwork squeaky wheel side of special needs. welcome to the spinning world of insurance, hospitals, therapies, medicaid, supplemental security income, special needs programs… ahem, i digress.

lately, i’ve started wondering about things that are part of emmit’s special-neediness (hm. specialness?) that might not be caused by dwm. things that more closely align with autism. so we’re starting down that path: evaluation, diagnosis, action plan. in some ways, it’s like starting over again, learning about something new. except it’s still emmit, no matter what diagnosis he has, which is a lesson i’ve learned with time. to get to this point, another beginning of another path, i have to instigate. where i want to be able to sit back and have someone – doctor, therapist, teacher, expert – tell me what to do, the momentum has to come from me. that’s a scary responsibility. i’m obviously not a medical professional, how can i be expected to know stuff? and how can i be expected to pick and choose from all of the information out there to make sure i’m doing the exact right thing for my kid? eek!

parenting a special needs child is a process. a marathon, not a sprint. i need to remind myself of that often. instead of getting overwhelmed, i need to remember that all of the challenges don’t define emmit or us. it’s okay to stress, fret, lose sleep, worry and wallow. the important thing is to then turn around and celebrate, enjoy, laugh, love and just generally get on with our chaotic life.

waiting for school bus

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4 responses to “squeaky wheel

  1. Jane says:

    GJ is such a proud mama/GJ. love ya!

  2. Gj has shared your site with me Ja

  3. GJ has shared your site with me Jaq and so powerful your writing. Each journey unique and others will benefit from your writing just as you are with them. E will do just fine with mom and dad he has. J too as they delight – and no you are not doomed with the curls!

  4. Rejoyce says:

    Jaq,

    Thought of you while listening to this talk. Wanted to share, in case you are interested. Moving and funny, bridging play, creativity, life, and autism.
    http://www.ustream.tv/recorded/14702786

    Loving you Always,
    Rejoyce

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