Life On The B Side

Taking all that life throws at us one moment at a time

Square 1 September 16, 2011

Last night on FaceBook I put that I was “simply choosing not to be stressed out”. 

Who am I kidding?  I’m stressed.  I’m worried.  I’m annoyed.  I’m pissed off. 

I’m stressed for myself.  I’m worried about my son and his future.  I’m annoyed at the lack of resources available.  I’m pissed off that we have such a hard time and I can’t imagine what it’s like for people who have no insurance or are single parents or who have more than 1 child that needs any kind of services. 

Back in May, Jay had an appointment with a Pediatric Neurologist (child brain doctor) so that she could tell me he needed therapy.  (Duh!)  That lead us to take him to a Speech Langauge Pathologist so that she could evaluate him and agree that he needed therapy.  (Seemed unnecessary to me but ok).  That 45 minute appointment took us 2 months to get and we got a bill for $372.  (Lovely)  She told me, in July, that it would take 2 weeks to get all the insurance business taken care of and then the scheduling dept would call me to set up weekly sessions for Jay.  Up to that point I was still alright.  I mean, it all seemed ridiculous and round-about and it all seemed to be taking a very long time but hey we were making progress.

3 weeks ago, I figured I’d given them more than enough time to get their paperwork in order so I decided to call and check up on my boys status.  By that time a month had passed since his speech pathology evaluation.  They had said it would take 2 weeks remember? 

Voicemail.

The next day I called again. 

Voicemail.

By the way … the voicemail message says, “I’m either on the phone or away from my desk, please leave a message and I will return your call within 24 hours.”  Yeah right!

Today, I finally got someone on the phone.  They tell me that insurance cleared the therapy and our file has now been moved to the scheduling dept.  OK … cool.  I like that.  Progress. 

They transfer me to the scheduling dept and after listening to crappy music for 10 minutes I get someone who informs me that … 

“There are no openings at this time.  You’re on the waiting list and it’s quite long.”

 

WTF ?!?!?!

I spend 15 minutes on the phone with the scheduler trying to work out something.  Anything.  I need to get my son some therapy.  She tells me she can get Jay a spot on Tuesdays, 2 pm at a clinic 50 minutes from our home.

We can’t take that.  Both CC and I work, and HAVE to work, just to keep a roof over our children’s heads and feed them.  How are we to get Jay to therapy an hour away, in the middle of the day on a Tuesday?

There’s gotta be an easier way.  I don’t know what it is right now but I’m back to square one.  Back to making phone calls and googling. 

…..

Last night I was watching the TV show Bones.  There was a girl who along with being deaf had a disease that I had never heard of and can’t remember the name of now.  Her parents were having a hard time dealing with her and had resorted to beating her pretty badly at times.  Don’t get me wrong … I FEEL PHYSICALLY ILL WHEN I HEAR ABOUT CHILDREN WHO HAVE BEEN ABUSED.  It’s unforgivable.  I’m not in any way condoning nor am I making excuses for people who abuse special needs children but maybe, just maybe I can kind of understand it.  Thank God, this doesn’t apply to Jay, but sometimes the children are just that severely affected (by whatever) that it makes life unbearable.  Sometimes, it’s that bad, that getting through 1 more day seems like torture.  Sometimes, it’s just that hard and you just can’t cope and the system just lets you down and you just have nowhere to go and no-one to turn to. 

On the show, when the parents tried telling the police officers of the hard time they had raising her, the response was “But why didn’t you ask for help?  There are services available.”

Really?  There are? 

Sell that bridge to someone who doesn’t know better.

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3 Responses to “Square 1”

  1. Having worked in the system here in the UK I can only sympathise! I really wish I could offer some good advice. I find it amazing that you have to be googling to even find the services you need!! I meant to ask you actually what do you mean by “early intervention”. Can you not contact social services for them to do some sort of assessment? Stay strong x

    • Early Intervention (EI) is a state funded program than provides free therapy to children ages birth to 3. Then when you age-out of that service you get transitioned into the school system where you also get free therapy. The problem is that the school systems are under funded and can only provide limited amount of therapy. When Jay was in EI, he got 4 hrs/wk of 1-on-1 therapy in our home. Now that he’s in school he gets 45 mins of 1-on-1 and 1 hr of group therapy. It’s just not enough. I’m trying to get him some additional therapy (outside of school) and that’s what’s causing my irritation at the moment.

  2. rhemashope Says:

    I’m so sorry. That’s incredibly frustrating. (I have also never appreciated/understood speech evaluations. My kid is nonverbal – we don’t need a speech evaluation to determine she needs speech therapy!). Hang in there, Mama. One way or another you will get your boy what he needs. And he will be fine.


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