Friday, March 29, 2013

[Insert Profanities Here]

Okay, so there's a ton of good stuff going on over here (like the absolutely perfect new house we found, that we will be moving to in less than a month.  A house that Sammie B can navigate completely by scooting, using her gait trainer, or using a power chair if we go in that direction . . . perfect), but there's also a lot of, um, shitty, and tonight, I'm allowing myself to linger in the shitty and just be mad and disappointed.

We didn't get into either of the great charter schools we wanted to.  Our lottery numbers weren't picked.   For one, we don't yet know where we fall on the wait list (so still some hope), but for the other we are pretty stinking far down.  Honest to God, I'd move mountains if that's what it took to get Sammie B into a great school that's just right for her, but I don't think our district has it.  I really don't.  I think they either have special education-only placements that are inappropriate for a number of reasons or mainstream kindergarten classes where the class sizes are ridiculous and she'd get lost in the mix.   We KNOW that she's been lost in the mix in her current preschool class, because the mix is one where the majority of the kids are there for speech/behavioral issues and they demand much of the teachers' attention.  Our girl, who can't move around and cause trouble and is content to just sit quietly and look around, is stuck doing JUST THAT, and she so often shuts down.  She barely talks at school even though at home she's rarely quiet.  I honestly don't know where we go from here.  Her birthday is 6 days before the kindergarten cutoff, and while I'm pretty sure we want her to have an extra year before starting actual kindergarten, I know the district is going to push for kindergarten, and I'm not sure another year in preschool is the answer anyway . . . that's why I wanted one of the two transitional/developmental kindergarten programs (that last two years).   So, now what?  I have no idea.   I've set up tours of two private schools (including one that told me they likely won't have spots but I can come look anyway) that are geared toward kids with special needs, though not really toward kids with physical challenges, more toward kids with autism and sensory issues.  But, we'll look at them.  I've toyed with the idea of pulling her out and just sending her to a small, nurturing preschool for a year (private) but we'd have to send our nanny as a one:one, and the cost (of both private preschool + full-time nanny) is no joke.  And, with a private preschool, there's no PT, no OT, no one to support her physically at school.  They won't have adaptive seating.  They won't have adaptive PE.  It'll be on us to forge that path, and hope that they follow our lead.  I honestly am at a loss.  I am going to make an appointment with a developmental pediatrician that we saw prior to preschool, because we need someone else to weigh in and help us on this one.  

I've realized that my girl progressed more in the ONE year she was at her little UCLA program than the two years she's been at this public preschool.  I've realized that when we sit down for IEPs and conferences, they tell us in such dry black & white terms what goals she hasn't met and what goals she has, but most of them don't seem all that vested in her (with the exception of the OT, Bless Her!) or her progress.  She's just another kid to them.  And so that makes me want to RUN to another, smaller district, but that would have consequences too (less PTs, less OTs, less equipment . . . less special education experience . . . though I'm starting to wonder if that's all bad.  Being vested in a child is far more important than experience, but there's no guarantee we would get that "investment" anywhere).    

On top of that, we are having doubts about our new nanny's level of engagement -- there's a lot of sitting Sammie B in a chair and putting one game after another in front of her, and not nearly enough active play or engagement.  There's been no planned activities (which is literally why we chose this nanny over another -- her prior preschool experience -- we thought she'd be fabulous at being proactive and planning art projects, lessons, etc. and she's done zero of that).  I'm going to talk to her this week when we find a chance without Sammie B around, but the thing is . . . I'm pissed that I have to.  

I'm sad.  My girl deserves the best -- both for school and childcare, and I can't help but just be pissed tonight that I feel like right now, everything about her daytime existence -- school, the nanny --  is just mediocre at best, and that her progress will be hampered by others' mediocrity.   It's just not acceptable. I hate it. 

I'm working more than I've worked since 2010, and that's stinking a bunch too.  I'm overwhelmed.  I'm tired.  I need sleep.  I have a raging sinus infection.   I like my cases right now a lot, and I said this was my year . . . my year to kill it at work right before I go up for partner . . . but killing it is killing me, and there's not even a semblance of balance in my life right now.  Mia wakes up now in the mornings (oh and at night because she's also teething . . . and so on top of working 16 hour days, I'm waking up at least once a night with that little bug) and she asks for B first, not me, and that hurts.  I had big plans to leave work early yesterday to try to make it to Mia's Easter Egg hunt at school, which started at 3:30 and (of course) at 10 am, a partner asked to meet with me about our case and her only availability was . . . at 3:30.   I'd already planned to be out of the office today for an appointment with Sam (and to finally drag my own ass to the doctor for above-mentioned sinus infection), so I couldn't tell the partner "no."   So, as 3:15 rolled around, and I prepared for the meeting instead of being en route to Mia's day care, I sat at my desk and cried.  I still leave work (most nights) in time to be home for the last part of dinner, bath and bedtime, but I feel like I'm rushing through all of it because of the pile of work that awaits me when the girls are sleeping, or checking my emails while doing all those other things because the rest of my case team is still in the office and I don't want to be perceived as "less than" any of them in terms of importance to the team.   I'm barely sleeping at all.  It's exhausting.  I know this work is cyclical.  I know a not-busy time will come, but right now. . . . I'm exhausted.  

And as I sit here, I just wrote my non-work to do list for the week -- pay bills, get movers, apply for permit to waive out of our school district, apply for permit to waive into every other surrounding district (having no idea right now if that's what we even want, but the deadlines are the end of April so even if there's a chance we want to do that, need to get the wheels moving), set up meetings with special education people in those other districts to find out which ones we might even want to be waived into, tour two private transitional kindergarten programs, call lovely hippy dippy private preschool that I put Sammie B on the wait list for when she was 6 months old that has been holding us a spot for two years "just in case," . . . . go tour there.   See if we could make that work for a year while we figure out kindergarten.  (It is a LOVELY little preschool, and the outside play area is a garden, water table, etc. . . . all stuff my girl would love so much . . . so maybe this is what we do.   But then, we lose PT/OT support at school, we lose the benefit of adaptive equipment at school . . . the thing is though all those services through our district have proven to be mediocre at best, and we continue to do our private therapies anyway . . . so maybe not such a big loss?  But the equipment thing is a big deal.  We could try to purchase some of it ourselves, but we are talking expensive stuff. . . .)  My head is swimming.   Swimming.   

I'm tired.  I'm mad.  I'm really, really disappointed.  And, I hate when things are so damn out of my control.   And, I hate mediocrity.  Especially when it comes to services and care and stuff for my girls.   Hate it.  

And, you  know what?  I'm hitting "publish" without even proofreading.  Because it is that kind of night. 


Anonymous said...

I am in a different state, but I have a few thoughts which might be helpful. If she remained a preschool student for another year, could she receive homebased services in her community preschool setting? In my school division, we have preschool students with homebased services in community preschool settings. It's essentially a special education teacher serving as a consultant to the community preschool teacher to help ensure goals are being worked on. These students then have access to speech, OT, PT (as needed) in their local school, someone just needs to bring them into the school for the sessions. The other option is a service plan, which also provides access to needed services, but in a reduced quantity than what an IEP can provide. There may be options within your school division that haven't been explained to you...never hurts to ask...hope this info is helpful!

Gina said...

I'm sorry you are stressed. :( It ISN'T fair. And it makes my heart so sad for you guys. But I was also wondering about a way to get services in the hippy dippy preschool. There are some kids in our district that we have decided it's more appropriate for them to be in another setting, and therapists travel to that school. I'll pray that something fabulous and life-altering drops in your lap. XO

Kate Sherwood said...

I am sorry about the school and nanny situation. I hate it when you struggle and expend all your energy to do what is best for your family only to have so many important factors taken out of your control.

Good luck! I hope the right paths are illuminated for you.

Momttorney said...

Thanks, everyone. So, in our district you CAN turn down the school's school placement "offer," and go to private school (you can also try to get the district to pay for that private school though that's difficult). In that case, you can still get school services, but they are at one of the district's schools, so we'd still have to take Sammie B there to get her therapies, and my feeling on that is that if she's not getting the support IN school, it is kind of worthless. Her current school PT Is NOT good. We will continue to do her private PT as we have this last year, and we really only rely on the school PT to do equipment and stuff like that at school. So, its more of the physical supports I worry that she'd be missing not actual school therapies, since I think those are fairly worthless anyway (but will become more valuable later as she needs more help handwriting, etc. once she's in higher grades where that becomes a bigger concern). At a private preschool, the teachers just may not be equipped to make those adaptations and know how to best help her. I know we may not find a "perfect" school or "perfect" nanny, but I at least want to feel GOOD about them, and right now, I don't. And that makes me sad!

jennohara said...

I just found your blog and I just thought I'd say Hi. I wish you all the best with finding the perfect school for Sammie. I can understand fearing that she would get lost in the shuffle of all the other children...
I've felt the same about my Hanna and have just recently decided that homeschooling will be the best option for us. I wish you all the best. Bless you and your beautiful family!

Anonymous said...

Granted, you understand the pros and cons very closely. But I'm unclear where Sammy's needs lie (other than physical).

If her needs are educational, a smaller setting is best - always best. And get the PT/OT stuff in the evenings/weekends.

If her physical needs are far more paramount and those needs are met best in the public school setting, send her there and hire a tutor for an hour each night who could go over her class work and help her get that 1:1 dedicated school work direction she needs.

Sammie B really is magical - but so are you!

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