Saturday, March 2, 2013

fighting.

parents of littles with special needs always hear, 'i don't know how you do it?!'  people seem to have this grim picture of how hard day to day life is.  and while my day to day is definitely different than it otherwise would be if my kids were typical, i can't say that i generally find that the hardest part.  here's a little story to demonstrate (this is 100% true).
jason and i decided that with shilo being deaf, and having cognitive delays, that we wanted to have signs put up near our home that said, 'deaf child area.'  i talked to our parent adviser from the deaf school to see how one goes about doing this.  she gave me the information on who i might contact.
i call the local board of works and talk to a woman.  i'm not going to rehash the whole thing, but she told me she didn't think they did things like that, and that she would pass my name and number on to her supervisor to find out for sure.  a week later, i still hadn't heard anything.  so i called again.  i talked to a different woman, who was equally as confused. she started by responding with, 'there are no signs like that,' which i patiently explained that there were, and matter of fact there is one two blocks from my house. the she told me, 'there's really no way to enforce those signs.'  i have no idea what that even meant.  it's a warning sign, to alert drivers that i have a child who can't hear them coming, if she darts into the road.  there's nothing to enforce.  and i end the conversation with the same idea.  i have the wrong department, but she'll let me know who i should contact.  so i e-mailed the supervisor.  he calls me back the next morning.  i do, indeed, have the right department.  and what he will need from me is a note from our doctor saying she is deaf (because i guess there are lots of fraudulent request for signs like this?), and for us to come to the next meeting for the board of works.  i comply to both of these things (actually our whole family went to the meeting), and then i have to stand up while he 'presents' our desire.  he is adamant that the sign not say 'deaf child at play' because that gives her permission to play in the street, but would be okay with voting on a 'deaf child' or 'deaf child area' sign.  it passed.
as this played out, and as i write this out, all i can think is, 'why do i have to fight so hard to get things that seem simple?'  i feel like a simple phone call explaining our situation, and i would have even happily complied with the note from our doctor, should have been enough to get things moving.  we live within city limits.  we pay property taxes. everything around is either rentals, empty, or empty lots. so no neighbors that would be upset.  i  just feel like this isn't something i should have had to fight for, for my daughter.
when your kids has special needs, you have to fight for a lot of stuff you shouldn't have to fight for.  specialist appointments.  hearing aids.  appropriate therapies.
and this is where i bring this around to now.  i wrote a while ago about an incident shilo had in november.  quick rundown, she woke up and was unable to hold her head up for a while, glassy eyes, lethargic.  twenty four hour hospital stay, mri, one hour eeg that showed she was at an increased risk for seizures, but didn't have any during.  follow up with neurology in march (very soon).  almost four weeks ago she had a second incident like this.  i videoed it because i knew it would not be happening by the time we got to the hospital.  i sent it to the neurologist.  i called.  every day.  for a week.  he couldn't get the video to open.  sounded like seizure activity.  i said multiple times, 'we don't care so much about the video.  we want a twenty four hour eeg.'  i heard nothing.  no call to schedule.  (i should mention that the doctor we're working with for this is NOT going to be her neurologist.  we have to go through him because he saw her inpatient.  however after her first neurology appointment, she'll officially have the same neurologist as abigail.  and we like him.)
shilo had her 15 month well check.  i asked our family doctor if we could somehow bypass neurology to get an eeg.  the test is innocuous.  it's just a bunch of probes hooked to her head, and a video camera pointed at her at all times.  not invasive.  not painful.  maybe annoying, but nothing big.  she agreed, and they worked behind the scenes.  so i got a phone call offering me a one hour, sleep deprived (bring your child in minus a nap) eeg for the day of shilo's neurology appointment.
     1.  we've already done a one hour eeg.
     2.  there is no way  that i can keep my deaf, rear facing, one year old awake on the 1-1/2 drive there.
     3.  shilo was worked in for her appointment because it's abigail's yearly nf clinic with neurology.
          i can't watch abgail and hold shilo for an eeg at the same time. not. happening.
so we said that doesn't work well, and is a waste of our time, and insurance's money.  thanks, but we want a twenty four hour one.  then this happened (pay close attention to 29 seconds, 1:16 and 1:32-also just to add to it, shilo doesn't usually have tongue protrusion, nor does she drool-both of which are happening here).

video


this happened off and on for around thirty minutes.  not bad enough to call an ambulance.  if i put her in the car and start driving, it will be done by the time i get to the children's hospital (or if i take her local, by the time they call me back to a room from the waiting room). i won't even share all the details of the ridiculous ten minute phone call with the neuro nurse while we were trying to figure out what to do.  i called a friend who is a doctor and just said, 'what would you do it if was your daughter?'
so we spent a couple hours in the e.r.  i'm very thankful we had the video so i wasn't just describing what was happening.  the most infuriating thing about all of this for me though, is that after her first eeg, i specifically asked the doctor who gave me results, 'did she have focal spikes?'  (these are an abnormal finding on an eeg that, while they aren't actual seizures, are pretty good indicators that they are happening).  she told me no, she just has some small finding that mean she's at an increased risk.
e.r. neurologist says to me, 'well we know she's at an increased risk because her last eeg had focal spikes and...'   wait.  what? she had multiple focal spikes on her one hour eeg.  i would have asked for a 24 hour eeg immediately if i had known that.  a doctor lied to me. about my kids test results. important ones.
we will be seeing neurology this week.  and we will be having a twenty four hour eeg.
but, here's the bottom line.  why did it take four months, large quantities of my time fighting, and me having to video my child having a seizure, for someone to listen.  do you want to know the hardest part about having a child with special needs?  it's not taking care of them.  it's fighting for every. last. thing. they. need.

2 comments:

  1. I'm so sorry you have to fight for everything. I know things won't always be easy but for the most part we are surrounded by amazing professionals who easily give me what I want/need for Joey and extras around who suggest more things to make life easier or point me in helpful directions when I'm lost. We've had maybe two things that were more difficult but in the overall big picture whole scheme of things.........we have it easy. And reading this helps me count my lucky stars. I pray things get easier for you guys.

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