Tuesday, December 23, 2008

paperwork reminders

The paperwork regarding Maxwell's condition/eligibility/therapy is truly neverending. The questions, forms, assessments, scores...yikes. It's never fun to read.

I have become much stronger the past few years, and I do my best to not get too worked up about it all. It's definitely more fun celebrating his progress. And I try and remind myself that a "score" is only that...a "score." It's not Max, it's not the lil' boy I love and adore. A score is simply a way to measure his development and help our team provide the appropriate services and therapy for him.

HOWEVER, I am still a mom with emotions. I am still a proud mom who wants everyone to see all the "wonderfulness" of Maxwell. I am still a mom who doesn't want everyone to be keeping "scores" on Max. I am still a mom who would rather be filling out paperwork for a daycare center, a sports team, or music class...than any of those I have received the past few weeks. Here are just a few:

  • Speech evaluation (that one actually brought me to tears - truly frustrating how difficult it is for Max to learn very basic play and communication concepts)
  • Renewal eligibility form for DDD (Listing your child's many developmental, medical, and behavioral challenges simply isn't easy or encouraging.)
  • Extensive paperwork and meetings for the Medically Intensive Program (Max has been fairly "stable" recently, so we may lose services. Additionally many programs might be stopped due to major budget cuts.)
  • Brochures, paperwork and services for the WSDS and affiliates
    (I haven't mentioned this to anyone really, but Max recently qualified for the state's deaf/blind program due to his multiple sensory losses. I never envisioned my family being on the Helen Keller Foundation mailing list, but here we are.)

Oh yes, this paperwork can be a little difficult on a mommy's heart...no matter how strong you think you are.


Eva and her 'rents said...

Wrapping you in loving and supportive arms...XO

Eva Nichole said...

I know the feeling and sometimes they give you only a couple lines for things like medical issues and you want to laugh so hard and say, "Can I have a notebook so I can finish writing their medical issues in?"
I also know the whole communication thing way to well, Eva is communicating with pictures right now, she just does not want to sign or anything. It's really hard.
Good luck with everything!
Crystal and Eva

Meril said...

I was pondering this same thing yesterday morning in the shower. I live in the land of "Who Timothy IS and what Timothy CAN do" instead of "Who Timothy ISN'T and what Timothy CAN'T do"......... Those trips to the other land are treacherous to my heart too.

So I was wondering, yesterday, how much stuff I could have written out on pre-printed labels, so that when I got these forms and evals to fill out I could just slap a label down and not have to dwell on it so much. I was thinking I could also be more objective this way.

Doesn't work for the DDD review, but I'm going to seriously consider this tact. I have to admit, though, I have NO CLUE as to how to print labels....

Merry Christmas - we drove by you yesterday and waved.....

hannah m said...

Dear Friend, I hear you...there is something about seeing the black and white of it all in the piles of paperwork that can be too much of a reality check for me. And I'm still aware of my "parallel life" from time to time - the one where I know nothing of hospital life and therapies and hearing aids, etc. for my baby.

That said, I'm a big believer in sitting with the painful and sad parts of the ride we're on with our children...Being strong doesn't mean being happy and positive all the time! I think writing about it and allowing the sad and painful feelings also allows the joy to be that much deeper and truly savored.

I hope that makes sense. Mostly, I just wanted to commiserate and let you know that I think I understand some of what you're feeling! Big hug! *h

Karen (Mom) said...


We are just beginning to discover all of the aid that Lily could be eligible for. I think part of me didn't want to admit that she needed the help. But here we are. lily has been classed as deaf-blind here in Illinois. She signs more. I think she can DO so mcuh MORE!

Amy, Mike and Ben Russo said...

You are a great mom to Max and it is normal to be upset at these moments. You just want what's best for him.

skeybunny said...

Hey guys,

Amen to that post. Hope you had a great Christmas and New Years'.

Sarah, Jeremy, and Evan