Wednesday, July 27, 2011


If reading Sammie B's schedule in my last post didn't make your head spin, rest assured, mine is spinning enough for all of us. Three appointments on Monday, school and an appointment Tuesday, school and an appointment Wednesday, two appointments Thursday, and school on Friday. That's not just a busy week. That's her every week.

When we started this journey with the Early Intervention Program, one of our wise doctors (you may remember him in prior posts as "Super Doctor") gave us sage advice: early intervention is important, therapy is important, and the opportunity for free therapy through EI is only there until she's three . . . so take what you can get, but only to the extent that it doesn't interfere with her being a kid and you getting to just enjoy being a family. We really have tried to live by that advice. When we were offered speech therapy, several of our doctors said she probably didn't need it (which, I think was wrong -- while she may have a "typical" amount of words, her articulation is problematic and she has to really be encouraged to use her words, particulary in sentences, though she may not need speech therapy as much as she got it), but that because speech therapy is generally very fun for kiddos and not strenuous, to do it. Sort of like, "why not?" So we did.

I think it was also comforting for B and I to know that she was getting so much therapy and "work" during her days, because it sort of lessened our working-parent guilt that when we got home in the evenings, we were tired, she was tired, and we ALL wanted to just relax and play, not work. And of course, we never wanted to turn down someting that could help her, because as a parent (and probably particularly as parents to a SN child) there's always that nagging worry that maybe we could be or should be doing more for her. So, we took all the therapies we could get, and advocated for more. And suddenly we had the busiest two-year old on the West Coast. And we've managed to keep this schedule for quite some time.

But lately, I find myself going back to what Super Doctor said . . . "as long as it doesn't interfere with her being a kid . . . "

On Sunday, we put together the water table that we'd gotten for Sammie B (after she showed off some stellar standing at the one at her school). She played with it for about a half hour Sunday night before dinner and LOVED it. Like squeals of delight and giggles loved it.

After a half hour at the water table, we came inside, had dinner, did the bedtime routine, and ended our weekend.

Monday, she asked for her "watah table" as I was dressing her and getting her ready to head out the door for her therapy appointments. After PT and OT, she came home, had a nap, and asked for her "watah table" again, but it was almost time for her speech therapist to arrive. Then it was dinner time. Then it was bed time. And suddenly, I was putting my girl to bed and she hadn't gotten to play with her new water table. Sure, she'd had a great day of working hard in therapy, but she hadn't gotten to play with her brand-new water table. And that bugged me. Tuesday was pretty much a repeat, she asked for it as we were headed out to school . . . our day was full, and we didn't have time to squeeze in the water table.

Sammie B has soooo little time for Sammie B-led play. And, while the therapists ALL do their best to make therapy FEEL like play, they are still the ones (for the most part) leading the activities, telling her what to play with, how to play with it, and they all have agendas -- to make her work.

So, while I'm generally dreading the transition to the school district services (in two months - why is time moving at warp speed?) and the evaluation and the IEP and all that goes along with that, I'm also starting to see it as an opportunity to do some rearranging and simplyfing of Sammie B's schedule. Her school program will most likely only be from 8 am - 10:20 am four days a week, and my goal is for her to have at least two weekdays where other than school, she has NO appointments. It shouldn't take a major feat (as it did this week) to figure out a time that her nanny can do something fun and spontaneous with her (they went to the fair today, which required me rearranging multiple appointments ...). I want there to be days where she can just play at home, with her toys. Where she and her nanny (or me or B) can just decide at the last minute to hit the zoo, or the park, or a movie.

We hear so many different opinions from so many different people - therapists, other parents, etc., - that the school-based therapies aren't going to compare in quality or quantity to what she's gotten from EI, that we'll be lucky to get group speech therapy and likely won't get one-on-one therapy, that we should try to continue all our therapies privately if we can afford to, etc., but what I'm feeling right now - what my mama gut is telling me - is that Super Doctor was right and that we HAVE reached the point where the therapies are just.too.much and ARE interfering with her just being a kid. And, we CAN and SHOULD simplify.

So, what I *think* we'll do is count on the school, at least initially, for speech therapy and see how it goes, that reduces our weekly appointment load by two appointments right there (because she'll get her ST while at school). Let the school also work on OT with her, and see our OT only once a week outside of school, instead of two (keeping our OT in the picture is also good because Sam LOVES her OT best). We'll do PT twice a week, as we do now (though we are going to a different clinic -first appointment tomorrow! Think of us!), since that's the area she struggles the most in. And, we'll continue to do hippotherapy, since of all the therapies, I think that's the one that is the LEAST like therapy. We all love it.

Rearranging all of this (and just the change in general from EI to school district) is making my head spin. I literally had to map out Sam's days and put in "free time" so that I can try to work out new schedules with her therapists who all have super busy schedules and limited availability themselves (and also, I'm trying to reduce our driving time and get them to let us do appointments that are close to each other on the same days).

Reducing her therapies will likely fuel that nagging feeling of "are we doing enough?" but somehow, I want us to figure out - for her - a better balance between work and play. I know this means that we'll need to find more ways and more time to work with her at home, and we will. . . but I think about the things we've bought to encourage 'working play' at home (like the water table) that we barely have time to use, and I know this is the right thing to do, at least for a short while. We can always add more therapy later if we need to.

So, my head is spinning thinking about the upcoming transition, rearranging schedules, starting with a new PT, etc. I've also started looking at some private therapeutic preschool options, and well, that adds a new layer of complexity to this whole process. I want to know what other options there are instead of our public options, but then there's the "how would we pay for that?" question. I was actually on TOP of the whole pre-school wait list in LA thing and put her on a wait list for a great private one when she was eight months old. We have a spot, but . . . we know that's not the place for her. Not now. And, well, I don't know how we'd possibly pay for private preschool + our nanny (which we'd still need) + the private therapies that we'll already be paying a lot of money for. In any event, (and the irony in the fact that I was on top of things and had her on other lists forever is that) the private ones that I like best and that would work for her now have wait lists of a year, but I'm going to tour those in case we hate the public option this year and want to switch next year.

This is a tough journey, and while right now, I'm actually feeling pretty optimistic about our transition in general, my head is just spinning with the decisions ahead. I'm worried we won't be offered a public program that we think is a good fit for Sam. Her developmental pediatrician and her current teacher have already indicated that they worry that the public classroom that could most easily accommodate her physical needs is one where she just cognitively and verbally does not belong (which was reassuring, because I'd known that from the moment that the school district mentioned that program, but it was validating to hear from the teacher she's been with for the last year and her developmental pediatrician), and they think the school district may try to pressure us into that program because it makes their job easier - that's the center where the physical therapists are based, where the PT equipment is, etc. We worry we are going to have to fight to make them bring those services to her in a program that fits the rest of her better - and where she'll be challenged cognitively and verbally. I just feel like we have the fight of our lives ahead of us to get the school district to really and truly "get" Sam as a whole child and not just see her as a child with severe motor delays and lump her into a classroom where she cognitively doesn't belong. So, optimistic - yes. But oh the anxiety.

And the questions are swirling . . . Is there a private preschool option that would be a better fit for her? Could we figure out a way to make that financially possible? Are we cheating her by going with the public option so that we can afford the private therapies?

Is there more that we could or should be doing? That nagging question and worry.

1 comment:

Gina said...

Couple of things. Have you ever had her therapists cotreat? I've cotreated with OT/PT/DT's before and it was quite successful. Also, would your therapists be open to letting Sam pick the activities? I loved when I'd get to a house and the parents would say, "Hey, we just got this new toy, can we work it in?" The whole point of EI therapy is to use the stuff in the kids' homes so that the parents can use the toys to their potentials. I hope that your therapists would be open to that. If not, I'll call them and read them the riot act. ;)

Regarding school therapies, yeah, it's hard to get one on one. I don't know how it works there, though, but if you really put your foot down and demand one on one or at least VERY small group therapies, you might get them. With that being said, sometimes groups are more effective than one on one for speech/language anyway.

Good luck. Follow your gut. You are one of the more phenomenal moms I've ever known, and I know you'll make the right decision even if you change your mind 9305 times before settling on a choice.