Fed Up with the System

I'm just now calm enough to talk about this w/o bursting into tears.

Before I get all dramatic on you, I'll back up.

I blogged about Gabe's speech issues here, and here. And to get the real low-down on my boy's down-low, type SPEECH into my search bar, up there.

Long story short, he's always struggled & because he can't communicate, it ends up in tantrums, or crying, or someone not being understanding because he can't be understood.... long story short, FRUSTRATION (for all parties).

He's only 3 & he's already been made fun of by peers & even an adult or two.

It probably hurts me worse because of my education & experience, knowing that window of development is closed & even the drapes are starting to close.

So, when he had an IEP meeting in Dec., which led to further testing, and another meeting today, to explain what he had qualified for, I was anxious. This has been AN EIGHTEEN MONTH PROCESS, I kid you not. I have been actively pursuing therapy for him since he turned 2. In 2 weeks, he will be 42 months old. Three and a half years, and he has yet to say his sister's name correctly, or even able to tell me what he wants for dinner.

I've bent over backwards to make it work. We've spent about $1,000 (that we DON'T have) to get him evaluated & get him therapy. He was referred by the pediatrician exactly a year ago. And 10 mos ago, one of the two children's hospitals in St Louis did an extensive eval on him (as well as a hearing test) & deemed him very much in need of help.

The Scottish Rite (masons) provide a free service for speech. I pursued that. Took him to an evaluation for that (which happened to be 1/2 an hour away DURING NAP TIME) in which he qualified. I had to jump through more hoops to be put on a waiting list. We received the call that his name was finally on the top of the list THE DAY WE GOT THE CALL FROM THE SCHOOL DISTRICT that Gabe's referral had been received...I foolishly told them to give our spot to another child, as we were going to receive services from Special School District (or 'Special Services' as it's called out here in the sticks).

When I showed up for the IEP meeting in Dec., as I blogged, the SLP (speech/language pathologist) wanted to do further testing. This should've made me happy, only I felt very unsettled about it. During the whole meeting, I got vibes from her that perhaps she didn't want to take on Gabe's case.
I passed the feeling off to just being overwhelmed w/ the process.

Last month, after filling out about 7 packets, getting the DR to fax 2 forms, making copies of birth certificates, immunizations, & other necessary papers....
making it to 3 meetings.,
pulling him out of school TWICE,
having Jeff miss 2 mornings of work,
Gabe was evaluated again.

And today, we reconveined to get results & find out what Gabe qualifies for.

Big.

Fat.

NOTHING.

Yep, you read right. We went into this meeting, that started w/ the other party claiming that although Gabe showed such progress that his numbers didn't qualify him, (which alone SHOCKS me), that we would talk & come to a consensus.

We talked. But there was NO consensus. Matter of fact, I hesitated to sign the paper stating I was present & given a copy of the report.

TIMELINE:

24 mos (aug '07) Dr acknowledges Gabe's speech being behind & tells me to call in six months if he's not forming a 3-word sentence.

30 mos (feb '08) I call & tell ped's office that he's still not talking. A referral is made, meaning, they give me the number to special school district.
I call SSD & they tell me I"m out of their district.
They give me the number to Sensory Solutions.
SS is 45 mins away & isn't covered by the insurance.
I call the insurance co. & argue. Cry. And get mad.

32 mos (apr'08)
We decide to have Gabe tested anyway w/ the understanding that we'll be paying for everything otu of our pockets.
Results show that Gabe needs several hours of therapy each week.
At $150/hr, it's not something that we can pay for, since insurance won't cover it.

33 mos (may '08)
I make an appt w/ scotish rite. I collect/copy/fax necessary paperwork & drive both kids there. Gabe is evaluated & found to be in need of therapy.
I write the necessary letter to plead for help & am accepted by the S.R.
Gabe is put on the 6-mo waiting list.

Same month, we call Christine, who was 6 mos shy of receiving her Masters in S & L. We talk to her about hiring her to do some private therapy for Gabe.
We pay her what we can, she lovingly & sweetly visits as often as she can & we see real strides in Gabe.

36 mos (aug '08)
Christine must stop therapy to finish her schooling.
Within the month, everyone in Gabe's life notices his speech regressing.

38 mos (oct '08)
P.A.T. visits & refers us to have an evaluation done through their program. Tells us PAT will call us.
Later that month, I still haven't heard from them, so I bother my PAT educator again. Within a week, we receive a call to make an appt.

39 mos (nov'08)
PAT screening. Gabe is referred to Special Services Co'op for his speech delay. Within days, we receive a call from the SSC coordinator. She makes the Dec appt for us to meet for Gabe's IEP.
Within days, I receive a call from Jacob, Gabe's would-be therapist from the Scotish Rite. I thank him kindly for the offer, but give up Gabe's spot, as I foolishly felt we should just pursue therapy through the district (I'd heard it was probably higher quality).

40 mos (dec'08)
1sst meeting w/ SSC.
SLP expresses more concern (after just hearing me talk about gabe's frustrations & habits) than SL. SUspects Sensory issues. Recommends further eval by PT & OT.
I grungingly consent.

41 mos (jan'09)
Gabe spend the morning being eval'ed by PT, OT, & a bit by SLP. After lots of prep at home, bribery, & praise by me, Gabe performs excellently. So much so, they say they're shocked at how well he does.

42 mos (feb'09)
At Gabe's IEP meeting, we're eventually told he does not qualify for help at this time. Despite our pleads & debate, we're told that they can not make a professional judgement that he receive therapy, as "DESE just wrote us a letter 2 weeks ago, that we must stick to the numbers." We are also told that Gabe's hyperactivity most likely is the culprit to his speech problems & that he most likely is dropping off beginning & ending sounds on account of his lack of attention.

I cried the whole way home today. I yelled & possibly said a bad word or two. I got mad that I have in the past compromised my job by stretching things & numbers so that a family receives the services I know they deserved.
I just want the same.

Jeff & I are praying. That the SSC coordinator will feel convicted. And that she'll revisit this case & do the right thing. Because waiting another 6 mos for him to be retested means another 1/2 year of him being frustrated that no one can understand him.
We are also praying that despite their rules state that once you've given up a spot on their list, you can not be reconsidered, that S.R. will accept Gabe back onto the list, for therapy through their system.
We're also praying for patience, not only w/ Gabe (believe me, sometimes I'm just as frustrated as him!), but w/ those involved in this trying process. I want to have grace & mercy, even when the things I hear break my heart.