Wednesday, August 24, 2011

It's Going to Be a Long One

I've had a draft post sitting in my drafts folder since August 3, and as we've had new appointments and developments, I've just added bullet points to it so I'd remember to update. I've been exhausted and haven't had the time or energy or drive (or something) to finish it, and truthfully, I'm too tired to now, but it just needs to be done. Because it is getting in the way of me blogging about the magical little moments of our days, and that's the stuff that matters. Not the heavy stuff. Not all the damn appointments. But every time I think of something to post about, my first thought is, "Gah! I need to finish that draft." So, all day today, I told myself, "tonight is the night! it will get finished." Tired as I am, here goes.

As I've mentioned, August has been an exhausting (have I said I'm tired?) month. B's boss was out for three weeks and left B in charge, and so he worked a ton, which isn't the norm. Our nanny got a free (yes, free!) trip to Hawaii and we couldn't dare tell her to pass that one up, so she was gone for several days. I've had my weekly progesterone shots, high-risk OB appointments, and regular OB appointments (all going well - still "long and strong" in the cervix department, still on light activity/modified bed rest, same old same old); I'm "on" a case going to trial, so I've had a lot of work to do, but have tried to keep to the bed rest rules (while simultaneously feeling crappy about not being able to be a full member of the trial team, and slightly jealous of those who are -- which is a good sign -- that I MISS being engaged and invested in my career at that level), and Sammie B has just had a TON of appointments, a TON of evaluations (okay, 2 but it felt like a ton), AND we switched physical therapists.

Can you say, "exhausted?" What a freaking month!

So, with that background, the updating part is going to have to happen in bullet-points, but please, please stay with me . . . remember, this is a post that's been brewing for weeks. I've got a lot of important stuff to tell you! ;)

- Sammie B had two doctor's appointments at the beginning of the month -- a physiatrist appointment and a developmental pediatrician appointment/developmental assessment.

- Physiatrist appointment went "eh." Nothing negative, I'm just not so sure what he adds to the mix at this point. He's a good person to bounce ideas off of for alternative treatments, to talk about what our PT is working on, to write prescriptions for the equipment we need, but the appointments themselves are sort of "eh." He wants Sam to perform like a monkey, she doesn't want to. She won't show him her best stuff, so he tries to engage her while simultaneously drilling me about what she is or isn't doing. (More on those questions later). But, that's behind us, and we'll follow up in six months. We did walk away with some ideas for some alternative type treatments that we may try -- some supplements to help with muscle tone and some new PT methods -- but of course, none of those are covered by insurance, so we need to do some research before moving ahead with that.

- Developmental pediatrician appointment went phenomenally well. Sam is required to have a full developmental assessment every six months by the developmental pediatrician who is the director of her little center-based school program. Before she started there, we hadn't yet seen a developmental pediatrician, mostly because I didn't think we could possibly need another MD on Team Sammie B - we have so many, but I am so so glad that the program forced us to see one . . . because honestly, this is the first of the MD disciplines that I've felt like is really just there to help us UNDERSTAND Sammie B and enable US to enable HER to be the best Sammie B she can be. Sam did so well with the last developmental pediatrician assessment, but that particular doctor left the program, so I was nervous about seeing a new one. But, it went very well. As I've said over and over, one of my greatest concerns is that because of Sam's physical limitations (which affect ALL her motor skills, including her fine and gross motor skills and her speech/articulation), that people will assume she doesn't "get it," or that she'll be lumped into a category -- particularly as we transition to the public school system -- where she cognitively doesn't belong. So, getting these independent assessments (not from the school district) is important for us, and of course, we want Sammie B to show all that she knows, but it is always a worry that she won't feel comfortable with the evaluator, that she won't be in the mood to perform (she is, after all, only 2), etc.

Anyway, in short, the appointment went phenomenally well. She warmed up even faster than last time, and she blew me away. There were little "tasks" that I saw them pull out of their bag of tricks, and I thought, "oh this is not going to go well - she can't do that!" and guess what . . . she can. Her cognitive scores really reflect what my hunch has been all along -- she's a smart little girl whose body just doesn't always allow her to show everything she knows. I talked a lot with the developmental pediatrician about my fears for Sam's education. The pediatrician feels very strongly that Sam needs to be in a mainstream environment where she will be cognitively (and verbally) challenged and that they (the school) need to bring the physical supports to HER -- not do what's easiest for the school -- to put her in a special education environment where the physical supports are already there . . . because that's not appropriate for her cognitively. That's also been my "vision" all along, so it felt good to hear an expert agree -- after her own assessment.

She also sort of just gave me permission that I desperately needed to NOT worry about a few things. Did you know that stacking blocks is an important "cognitive" milestone for 24 month old kids? Well, it is. And, on most of the developmental assessments done by Sam's OTs, once a kid "misses" a skill in a particular area, the assessment stops. So, because Sam won't stack blocks, she's scored at "23 months" cognitively on those tests for quite a while. Anyway, the developmental pediatrians are much better at adaptiving the developmental assessments to control for motor limitations . . . and so when Sam refuses to stack blocks (she literally says, "No!" and pushes them away or smiles shyly at me and hands them to me and says, "Mama!" for me to stack), the developmental pediatrician tries to get at the same skill from another angle, or moves on. Anyway, Sam refused to stack blocks. I swear to you, in these assessments, when I see those stupid blocks coming out of the bag, I START SWEATING. She handed them to Sam, Sam said "no," and pushed them away, and the developmental pediatrian moved on. Then, she said to me, "I wouldn't worry about the stacking thing." And I said, "oh thank you! I have tried and tried to work on it at home; we've bought every set of blocks out there, and she just doesn't want to do it." The developmental pediatrician said, "well, it is clearly NOT a cognitive thing, it is a motor thing . . . she knows what you want her to do, but she knows herself well enough to know that it is going to be hard for her and she'd rather not." She went on to talk about how Sam has a very "mature" sense of herself . . .and that the block thing is most definitely NOT a cognitive thing.

We talked about playdates . . . she asked if I schedule them for Sam with "typical peers," and I answered truthfully. I've tried. But it is hard. It is hard sometimes to see "typically developing" right in front of my face. From my friend's kids who were born just days or weeks or months before or after Sam. It's hard to see MY child struggle while their children aren't. And, logistically, well, playdates in the park are the norm around here, and that's hard. Usually, the kiddos run off and play together, the moms congregate together and chat, and Sammie B, who can't just run off and play without me, is left sitting and playing with me. So, it's just been easier not to go there . . . but the developmental pediatrician suggested planning playdates that are a little more Sammie B-friendly. Art playdates, movies, play dough, sitting and watching Dora, etc., and I'm really making an effort to do that. (Just a few days after the appointment, we did a beach date with my friend and her little girl and all sat in the sand and played together).

These are long bullet points, I know. The short story is that the appointment went well, and I was so, so glad to feel like someone "gets" my girl. Sam's teacher was there too, and the fabulous thing is that when we talked about all the stuff Sam knows and can do, he wasn't blown away, he knows it. He sees it. He agrees with what the developmental pediatrician said, he has the same visions for Sam's education. And that feels good. Thank God for this little program - for Sam's teacher, for everyone there, and all that it has done for Sammie B (and as I type this, my eyes fill up with tears thinking about her finishing the program in a month when she turns three . . . ).

- We bid farewell to Sam's PT she's been working with since she was 8 months old and started with a new PT at Children's Hospital near us. The initial appointment/assessment (does this child get assessed enough you think?) was a little overwhelming . . . it was evident to us that our PT should have been working on things that she wasn't . . . and also that Sammie B has a little further to go before independent walking than we probably thought. That was hard to hear and hard to think about, but after a few days of thinking about it (and some supportive mamas giving me great advice), I was reminded that working more on the "in between" stuff (like the pre-walking stuff) would just give us more to celebrate on our way to the big one . . . and I so hope that proves to be true.

Each appointment after that initial one has gone so very, very well, and I actually think Sam has surprised her new PT. I don't think she really realized at that initial assessment all that Sam CAN do, and I see her being encouraged and surprised each time. (In fact, when she showed me her list of treatment goals after the initial assessment, there were some that Sam can already do -- so she was pleasantly surprised, and we came up with some new goals!) There's definitely a warming up and getting-to-know-each-other period for Sam and her new therapist, but so far so good. We are excited to have the positive perspective, a huge amazing clinic with so much great equipment, and to be trying out new tools (like gait trainers and walkers) to help Sam be more independent. B and I are both kicking ourselves for not moving on from the old PT sooner, who had NOT been trying new things and had NOT been a "breath of fresh air" in a LONG time, but we are trying to just move forward and not wonder what we "could" have done differently.

The new environment, new ideas, and fresh perspective has also given B and I some much-needed fresh ideas about working with Sam at home. I think we were ALL just burnt out on the old PT routine, but now, we are getting some fun new ways to work on things, and each evening, B and I feel more motivated to try to mix a little "work" in with Sammie B's play. Good for all of us.

- Sammie B is likely going to be acquiring some new equipment, like a gait trainer (which is like a granny-style walker, but with more support for her trunk). While I wish my girl didn't need a gait trainer (I so wish for her an easiness she hasn't yet known), I'm in a place where I see this equipment as a wonderful tool to allow her to explore her world - to give her some independence, and less as a reminder that my girl struggles where other kiddos do not. I'm angry that our old PT was so narrow-minded on the gait trainer thing . . . I feel like she discounted OTHER areas of Sam's development and what these adaptive devices can do for her cognitively and socially (allow her to be up and exploring with her peers) and I'm pissed to learn that her theory (that once you give a low-tone kid supportive devices, it just makes it harder to teach them to do things independently because they've become comfortable with the supports) is not really supported by the most current research, but again, no looking back, only forward. Picking equipment is overwhelming. It's a heavy desicion. At first, it felt like we were giving up on independent walking . . . but that's not so. One piece of equipment - no matter what equipment it is - is not the final word. Just a step along the way. A step in her story. And, a step that will help HER grow and learn and live. It's all about perspective. And I'm looking forward to my little girl blooming with a new - mobile - perspective herself.

We put Sammie B in a gait trainer at her last PT session, and B and I both were lucky enough to be there, and my heart almost lept out of my chest as our girl started taking tiny steps and moving herself toward her dada. To see her moving . . . with no adult assistance . . . just her own motivation and some equipment . . . made my heart melt. There's still a huge learning curve for her to learn how to move it (it is heavy) along with her body, and how to truly navigate in it, but it will certainly be a valuable tool for her. One that we are excited about.

We've also implemented a reward system for PT appointments. PT is by far the therapy that is the hardest for Sam, and the one where she most often doesn't want to cooperate (can we blame her?). So, we've been talking to her a lot about trying even when things are hard, and after each session, she gets to pick a small surprise out of a basket in my car. She loves it. I've also told her that when her PT asks her to do something, she can say "yeah! yeah!" instead of "no!" and she thinks it is funny. So now, when we are met with resistance from our girl in PT, we say "Sam, let's just try okay?" and she says, "yeah! yeah!" and then when we get to our car, she immediately says "surprise!" and waits to pick. And, to our new PT's credit, she is WORLDS better than our old PT at dealing with the resistance. When Sam says "no" or "all done" during a hard activity, the PT just says, "okay we are going to do it one more time and then we'll be all done and you can pick what we do next, okay?" And, it is working. I know what works and what doesn't will change many, many times, but our old PT's defeatist attitude sure as hell wasn't working, so this is refreshing and encouraging and wonderful. And, I think we are all enjoying reasoning with Sammie B . . . her included.

- We had Sam's assessment with the school district too. That one was overwhelming to say the least. Five adults (OT, PT, ST, adaptive PE, psychologist) all with their own agendas, firing questions at me, at B, at Sammie B, asking her to perform, etc. OVERWHELMING. (And, yes, they brought the effin blocks out.). Short story -- Sam did amazing on the cognitive portion again, and well, the physical stuff . . . we know where she is. So, that's what I kept telling myself "nothing they tell me is going to be a surprise." And, it wasn't. The truly wonderful thing is that I know that the psychologist agreed with me that Sam ultimately belongs in a mainstream classroom with supports. I've had multiple conversations with the transition coordinator since the assessment, and we all SEEM to be on the same page. District funds are limited, so figuring out how to make our "vision" for Sam's education a reality will take some working out (and we already know we may have to initiate due process if we want a one-on-one aide for Sam to help with mobility because right now the district will only give those to kids who are a danger to OTHER kids) but all in all . . . I'm cautiously optimistic. As always, I just wanted to feel like our team "got" my girl, and I do. I didn't want her to be underestimated, and I don't think she was.

Funny story about the evaluation (you deserve a laugh if you're still with me). Before we went that morning, I told Sam we'd be meeting some "new friends" that would ask her (and us) a bunch of questions and want to see all the cool things she can do and all that she knows. I told her it might be hard, but that if she tried really hard, even at the hard things, that afterward, we'd go get ice cream. Well, the SECOND the assessment team started packing up their bags at the end (of the TWO HOURS), Sam looked at me and said, "all done. Ice cream." We went straight to get ice cream and skipped lunch altogether. She deserved it. And about halfway through our lunch, a man that had been sitting near us came over to tell me that he'd been watching us, and quote "what a magical little girl" I had. I got tears in my eyes and told him he had no idea what his comment meant to me and that we'd had a very intense morning. He said, "well, she's amazing, and you are doing a fantastic job," and walked away.

Another positive, I think, that came from the school district assessment is that B went, and I think, kind of realized how much he's insulated himself from the "needs" and "services" part of the journey. He's kind of taken for granted that I take care of that stuff . . . but the assessment overwhelmed him a bit. He hasn't been at the others, and I think this helped him realize why I'm such a nervous wreck before them, why I hate them, why I cry and sob and say "I wish she didn't have to do all this . . . " etc. B's story on this journey isn't mine to tell, but I KNOW the assessment shook him a bit. I KNOW he was wowed and amazed by what our girl did during the cognitive testing, and so so proud of her, but I think (and perhaps, truthfully, for the first time) he also really felt what an uphill battle we may have in making sure she gets what she needs to fully access her education. We've had lots of healthy talks and heart to hearts and planning and thinking kinds of talks, and I'm feeling a little more like a team again. So, that is, no doubt, a good thing.

- There's something I need to explain. When I report here that Sam did so well on the cognitive stuff, I feel guilty. Like I'm bragging. The thing is, when I tell people this -- even on my support boards for parents of delayed kiddos -- people often say things like "well, at least she doesn't have a cognitive delay," but here's the thing . . . if she did, so what? Would we love her any less? NO. Would it make her any less magic? NO. I report on it here, and I worry so much about THAT apsect of the evaluations because I'm with her all the time and as her mother I KNOW how very much she knows and understands. She blows B and I away all the time with her memory and what she remembers and what she's picked up on. And so, the reason why I feel so relieved when the evaluators see what we see is that I feel then that they "get" her. That they aren't making incorrect assumptions about her based solely on her physical limitatations. That's it. Like any parent, I don't want my girl to be underestimated.

- Have you noticed a pattern in these bullet-points (besides that they are very, very long)? This kid is assessed too.damn.much. More than any two-year-old should EVER be "assessed." I mean, really, would YOU enjoy sitting in a room with five people asking YOU a ton of questions and asking you to do physical tasks that are just plain hard for you and then talking about your every weakness? Sucks. We have to find ways to keep these types of assessments (even doctor's appointments . . . I thought this when the physiatrist was asking me, "does she like drawing? how does she hold a crayon?", etc.) from turning into conversatons about Sam's "can't" right in front of her. The kid gets it. And we cannot talk about her like she's not there. B and I have both resolved ourselves to avoid that and to make a concerted effort in appointments/assessments for one of us to politely excuse ourselves to go play in the waiting room with Sam whenever that stuff starts happening.

- That brings me to my next point. Something I need our friends and our family to know . . . Please don't assess my child. We have enough experts "evaluating" her. More than anyone could ever want or need! Please don't talk about our girl, or ask questions about how she's doing with walking (or whichever of her "not yets" you are wondering about) as if she's not there. Please don't assume she doesn't "get it," because I promise you, that's one quick way to get written out of my life. I KNOW the questions are often well-meaning. I get that. But tilting your head to the side like a sad puppy dog and asking, "how's Sam doing in her therapies?" in the same way that you'd ask someone whose parent just died how they are doing is just not okay. It is not okay. So, if you want to know about "how Sam is doing," look at her. Look at us. We are okay. Evaluate our lives by the moments that matter -- the smiles, the giggles, the love. We are good. Ask me about what she likes to do. Ask her what her favorite ice cream flavor is or what her favorite TV show is, but don't give me that sad, head-tilted, "how's Sam doing?" shit. Don't do it. And, if you want to hear about the therapies and the doctors appointments and the stuff that keeps me and B up at night sometimes, because you care and you want to support us, then ask us. But not in front of her.

And, that, my friends is a finished draft. And now, I'll be free to get back to the other stuff, the magical moments that define my girl, not the boring.schmoring appointment updates that are just a necessary part or our new normal . . . so stay tuned for more.


Anonymous said...

By the time we finally figure out what's wrong with our children, we learn there's nothing wrong with them!

Dinei said...

Hooray for Sammie B! It sounds like she had a really long and challenging few weeks and came through like a star.

I feel you on the assessments. Because our OT never seems to remember him, she goes through a short assessment every week. It's enough to make me want to let the air out of her tires every time. You guys are incredible for all that you manage in Sam's interest.

Lastly, one of my classmates had a term baby 4 days after B was born. She never fails to comment on B's size or say something like, 'Can you believe that he's older than she is?' to anyone who will listen. After she started asking, constantly, for what size clothes he's in, I officially blocked her from Facebook and do my best to avoid her in social situations. It's not quite the same as the sad puppy dog face, but I feel you.

Anonymous said...

I'm glad you finally finished this post. I'd been getting concerned that something had happened when it was so long. Instead you were dealing with some frustrating situations, advocating successfully for what your too-cute B needs, and taking care of yourself--not to mention working. Yikes!