Friday, June 15, 2012

All About Jamie

There's been a lot of frustration going on in the house with regard to Jamie and most of it revolves around his speech therapy.  Things have not been great since he got a new therapist when he turned three.

Let me explain. When Jamie started getting therapy at the age of 2, he was with the Early Intervention program called The Alliance for Infants and Toddlers.  They provide all kinds of therapeutic support to the 2 and under set from speech to occupational to physical, etc.  But their services only run until age three.  Once your child turns three they get put into DART- which is the same thing except for the 3 to 5 set.  However, because it's a different program that means different therapists, different schedules, different EVERYTHING.

So, back in December of 2011, Jamie was evaluated to see if he qualified.  He did.  In fact he qualified for more than most kids his age who need speech therapy - he qualified in expressive AND articulation.  In January 2012, I met with people from DART as well as his service coordinator from the Alliance to talk about Jamie's IEP (Individual Education Plan - they're standard).  We went over the whole thing including how much therapy he would get (45 min per week), where he would receive services (daycare), and what his concrete goals were.  It all seemed very normal to me.

By the end of February we had finished up with our therapist from Early Intervention (who was awesome and about whom I cannot say enough wonderful things) and were ready to transition to DART.  The therapist who would be seeing Jamie started talking to daycare about scheduling. Not me. DAYCARE.  When his daycare schedule didn't fit hers, she tried to pressure the director to switch Jamie's daycare days to accomodate her - thus putting his classroom over quota.  When my director approached me about this, I said "No way is she putting YOU in a bind for this.  I'll talk to her."  Finally, 4 days before Jamie's birthday (so less than a week until she was supposed to start providing services) I tracked her down and spoke to her.

1) She had not yet even read his IEP.
2) She did not know how much therapy he qualified for - she thought he was to get 30 min.
3) She didn't know what his therapy goals were.

When I talked to her about scheduling, she kept wanting to do it in the middle of his nap time.  What the heck lady? You work with toddlers.  THEY NAP.  Finally, I managed to wear her down so she agreed to a 3 pm standing appointment on a day Jamie is already scheduled for daycare.

She didn't pick up until the middle of March. It wasn't ideal as he went 2 weeks without therapy but I figured it wouldn't be a huge deal and let it ride.  She picked up with him, saw him twice, and then Scot lost his job.  If you recall, that was the last week of March.

That happened the day before Jamie was to be seen for therapy.  I called daycare and immediately pulled Jamie out, thus changing everything for therapy.  I then called the therapist and explained to her the situation.  She said "Ok, we'll cancel for tomorrow and I'll get in touch in a couple of days to reschedule."  She did so but guess what? For the first two weeks of April DART was on "spring break" and there were no services. So, instead of Jamie missing one week of services, he missed three.  When she picked back up again in mid-April, she came to the house.  She did that for a couple of weeks and then Scot had gotten his contract job and we restarted Jamie in daycare so she moved back to working with him there.

Now, she had told me that they would "go all through May, then take 3 weeks off in June."  I was NOT PLEASED by this.  So we get to the last week of May (after Memorial Day) and she doesn't show up on her regular day.  Given then "all through May"statement, I assumed she would be there since it was still MAY.

Now this is where things get completely insane.  I called to complain to her about all this schedule crap.  He'd been 'in therapy' with DART for 3 months but had only been seen about 8 times - on a very sporadic basis.  I knew from listening to Jamie that he was having trouble.  He was losing articulation FAST and we stopped being able to really understand him.  He would get very frustrated with us - like he used to do before we ever started him in therapy.  I worked as hard as I could to help him and work with him but without consistent therapy he was barely treading water.  So when she didn't show up that last week in May I was livid.

I made it clear what was going on, that I wasn't happy, and that we needed something different.  She called me back the next day and I got no help from her.  NONE.  All I got was "this is the schedule. This is what we do. Kids are fine. Jamie is fine, there is nothing wrong with his progress."  Nothing wrong?  Really?  Even when I told her that I was his mother and spent more time around him than anyone she just stonewalled me and refused to offer any help at all. Also, the reason she didn't show up was because that last week of May was one of the three weeks in June they were on break. So, apparently if June 1st falls on a Friday, that qualifies as a week in June.

In an effort to sum some of this up, Scot and I started climbing the chain of command at DART.  I've had the same conversation with at least 4 different people.  I've said that Jamie is falling behind, that he is losing things. I've said that he is frustrated.  I've said that his IEP says one thing and he is receiving something else. I've stated clearly and succinctly that I want a different therapist. I've pointed out that this schedule crap has been going on since day 1 and that he is suffering for it.  I have been told:

1) The schedule is 3 wks off in June, on 2 wks, off another 3 weeks, on for 3 weeks in July/Aug and then back in full time in September. That totals up to 5 weeks of therapy between the end of May and the end of August.  This means, in Jamie's case, SIX MONTHS of inconsistent therapy between March and September.

2) That there's no problem with my child despite what I say and that I can't change this schedule or do a damn thing about him losing stuff.

3) That his IEP says he doesn't have to have services during breaks so he won't get them.

4) That I cannot have a new therapist because the one we have is the only one that serves our district.

Although my therapist neglected to give me this information, one of her higher ups did say that we can amend his IEP. However this requires that we re-evaluate data and that first we'll look at teaching methods, then teaching environment, THEN amending the IEP to get him continuous service.  It's kind of hard to collect that data when you're NOT COLLECTING FOR HALF THE SUMMER.  So, by the time we do all that, it'll be September anyway.

Basically, my kid is shit out of luck.

Scot and I discussed it to death.  In the end, it became clear that we would not be able to punch through the layers of bureaucracy in a time frame that would end up helping Jamie and that our only option was to hire a private speech therapist to work with him.

I called his old therapist looking for suggestions.  She tried but didn't find many options (or really any). In the end, Twitter saved the day and with those connections, I was able to hire someone to see Jamie once a week for 30 min to work on articulation through the summer and her first visit is later today. My very generous parents are paying for this because they are just as incensed as we are.

DART keeps saying things about how they want to help but they really don't.  They don't want to have to offer any more than absolutely necessary and, frankly, kids like Jamie are the losers in that situation.  Jamie remains about a year behind his peers.  I had hoped that by now he'd have closed that gap some - not entirely - but some.

So, for the summer, we will have the private therapist work with him every week here at our house while DART can provide support services at daycare in those 5 short weeks they dole out over the summer.  It's not ideal but it is the very best we can do for him right now.  Consistency is essential and this is the way to get it for him.

Once he's got a more full time schedule in September, I figure we'll allow him to get through until end of May next year and re-evaluate.  If he doesn't test out of the program before then, we may voluntarily pull him if he's doing well enough.  I've had enough crap from these people to fill a 55 gallon drum.


  1. I've said this before, but it doesn't just make me angry that you guys are dealing with this, but that this is the way it is in general. This is what our tax dollars are paying for? I want my freaking money back! What about all the kids out there who don't have parents like you and Scot? Who can't or won't fight the bureaucracy? Who can't or won't hire a private therapist? We're paying for this program to help those kids, right? And yet, apparently, we might as well not even bother.

    1. At least not outside of the regular school year.

      Part of the issue for Jamie is where in the schedule he dropped in. But I can't believe he's the only kid this affects. It basically affects any kid with a birthday from March to September!

  2. You go, mama bear. I'm so sorry it's been so hard to get the best for J!