Tuesday, December 7, 2010

Update from the front

Well, anyone who has read my last FB status can pretty much see where this one is going.  Today was our big meeting and, it has drained my energies at least for today and that is not a great thing.  I can barely put fingers to keyboard to type this, but I am looking at this blog post as therapy so, off I go.  

My mind just does a total disconnect when you sit across from people who have chosen as their career  the path of helping kids with special needs and you just see you are dealing with people who have no interest or investment in your child.  I mean it is not like they went to school, studied how to be a hairdresser or an engineer and then ended up as a special ed teacher.  If you want that kind of career you have to train for it.  It's not like me with my crappy liberal arts education, which although enlightening and great, did not train me for a profession in the truest sense.  You want to teach or treat kids with special needs, you need the specific training for it.  Seriously for all the expertise in the room today, we might as well been with a top graduate of VCR repair school. 

Ok, now that I have vented a little I can say that the meeting did not end badly and in some measure Leo and I accomplished what we set out to, which is that we came out of the meeting with no decision on the ZML school (no idea what I am talking about, check out my last post) and we have agreed with them that they will look into other therapeutic options for us in addition to two ZML schools.  They will make a first contact and see if we can set up meetings with them to see their facilities and what they can offer us and Maya.  The financial issues still need to be worked out but we got the impression that these organizations can help us request what we need from the government (although of course there is tons of paperwork to be done).

The part which sucked eggs was that the psychiatrist (the-buck-stops-here-person in terms of Maya's situation) felt the need to tell us, in a fairly friendly manner  that she had the power to decide to take Maya out of school unilaterally if that is what she so decreed and therefore we had better try to work with her to a solution to this "problem".  Now my daughter, in addition to being a file is now a problem too. 

The problem as such is that we have all communally agreed that the current school and therapy group offers nothing to Maya and Maya is making zero progress there (ummmm hello, that is why she needs therapy which they apparently do not offer even though they are a therapeutic center and we were told she would) and we agree that the best thing is to get her into a new setting as soon as possible.  On the one hand they tell us we have to find the right solution but out of the other sides of their mouths they say that we need to think of a solution after Christmas vacation even though all the legwork to find another good option can take weeks or months to work out, we need to "find" a solution to bridge this period.  We suggested to take her out of the therapy group and just leave her in school for the time being but were told that is not how they work, the therapeutic group and school place go hand in hand so if we give up one, we have to give up the other as well, although they did say they would check if they could offer us any possibilities in that.  When I suggested that their stance seemed like they were indeed kicking Maya out, I was met with a stern face.  I was then told that I was not being fair to them and that they were "trying their best" to help us and that we have to understand that Maya is not gaining anything from their programme which means they are denying another kid who could benefit from their programme the chance at help.  I mentioned that while I respect that, I am not concerned with other children and only my own and that while I also was invested in getting her out of there as soon as is humanly possible, that their casting her out on the street and letting her stay at home was certainly not in her best interest either.  Then the shrink backed down a little and agreed with me, but not before telling me again that she has the power to put Maya out on the sidewalk.  Point taken.  . 

We also made issue that Maya's former school's advice was drastically different from theirs and we got the proverbial shoulder shrug.  Then they suggested that a meeting be set up with us, the old school and this group to try and get to the bottom of that and see if everyone involved could come to a common decision regarding Maya.  They mentioned that I was relying a lot on her former school's views and I mentioned that was because they treated Maya over a two year period and that they know her and her capabilities much more and in the face of conflicting advice I was more likely of course to favor the party that knew my daughter longer as my logic told me they would have a better understanding of my daughter.  Their answer:  well Maya was younger when they treated her so they probably had an easier time of it.  By this time I only had the energy to shrug my shoulder so that the meeting could end and we could get out of there.  There's no winning.

In the end they are looking into various options at our request and I am grateful for that outcome at least and I will use them for this and hope that one of these options will be a good fit for Maya and that we will find some place that will be invested in her and in helping her and us bring out the best in her.

Sometimes I think the problem is that my bullshit meter is too well calibrated, I  often know when someone is just full of crap and once my little bell goes off I can never really again believe that there is sincerity.  Today they kicked screamed and of-coursed-me-to-death to tell us that they are interested in the best solution for Maya and that they certainly understand our concerns with such an important decision.  Then they say again that we have to find a solution for after Christmas vacation.  Ding-ding-ding-ding-ding!

Ironically this afternoon we were called by one of Maya's therapeutic group teachers who told us that they mistakenly sent us a letter in the mail today which offers us a date for Maya's going away party and that they do this as a standard for kids who are leaving after Christmas vacation.  She told us to ignore the letter. Does anyone else hear bells?


  1. Fingers crossed that Maya ends up somewhere that's a good fit.

  2. Thanks for your comments Commuter, always nice to see how loyally you read my post. I am working to be constructive about the situation although right now I just feel like sucking back some b-52s and railing on their asses.

  3. Hi Dana, sorry you are getting the runaround from those who are supposed to be caring for Maya. We also have some good therapists, and some who suck @ss. I just try to make more appointments and work more closely with the ones who actually seem to care.

    I have a feeling they won't "kick" any kid out on the street, they may just be putting the pressure on you to find a "private" solution and thus save the State some money. That is the sense I get here when they won't give me the care I want for my kids.

    Still, you are stuck having to find a "solution". Don't they understand that we Jews have a problem when someone wants to find us a "solution"?

    I say go with some b-52s in the evenings, because, hell, you're over 21 and you can! Actually, considering where you live, there are all kinds of options.

    Seriously though, I don't know what to tell you. I would consider getting a private work-up from a specialist that you choose. We were told a private sensory integration work up would cost about $400 here. That's just for the initial diagnosis. Still, it is worth your while to at least get a private professional opinion. It will also help you with leverage when you want to get Maya into the school of your choice because a specialists letter is always better than the parents' opinion alone.

    By the way, I really like your new layout. Much easier to read when I can see the whole paragraph.

  4. Hi Lita,

    Thanks as always for your support and ideas and of course your faithful readership. Things are on somewhat firmer ground as compared to when I wrote that post. We are trying to look at some recommended schools/clinics and see what we find. I am holding off on a private option for now until we see what the schools/clinics can offer us. When I say private I don't mean the money comes out of our pocket, but that we have to ask the government for the funds (it's a completely different system than what is in place). A private therapist will be covered by her health insurance no matter what since Maya has the diagnosis of Autism but I need to sort out where she will go every day for school and what services are available there before I bring another person into this already complicated situation.

    Thanks for the commentary on the layout, I was not happy with the old one for some time, so I am glad to hear you think it is better!

    Have a great week!