Thursday, September 26, 2013

She's Five.

I cannot even wrap my head around it, but it is true.  Five amazing years.  Five years of beautiful, delightful, joyful, magical, stubborn, wonderful, giggly, inquisitive, amazing Sammie B.

Five couldn't be any cuter, any more joyous, or any more magical.

If I had searched the universe for a little girl to make me a mama, I couldn't have picked a more perfect one than her.   I love her.  With all that I am.

** More details on her big day (and parties) to come when I kick this cold that's kicking me. **

Monday, September 23, 2013

This New School

Two weeks ago, our big girl started a new school.   I’ve written a lot about our struggle to find the right placement this year (here, here, and here for instance.).   Sammie B was in our district’s special education preschool (in a class for kids with mild to moderate delays) for the last two years, and while we always said it was “fine” we knew there were issues.  We knew it was "fine" for now, but we knew a similar placement wouldn't be "fine" enough for kindergarten or beyond.  She was the only kid with real mobility challenges in the classroom; many had cognitive disabilities as well; she was one of the few not on the autism spectrum.  Just not a great fit.   And there were no typical peer models.  Not even an ounce of inclusion.  We sat in IEP meetings and felt like the people at that table weren’t “getting her” (and that most of team wasn’t even really trying . . . the speech therapist (the only one with any one on one time with her) seemed to “get her” but not the others, and in particular not her teacher).  Because we sent our nanny as Sammie's one:one aide (as a result of an informal due process issue), we had "eyes" in the classroom.  And we knew that Sammie's class consisted of several kids with serious behavior challenges, and she was getting lost in the fray.  A quiet, cautious little girl content to sit on the sidelines to watch was doing just that . . . watching.  A spectator.  We knew that wasn’t enough. 

In the spring, before her "transition IEP" (for kindergarten) I toured the classroom the district was recommending for her for this year and suffice it to say we walked out of there and knew we had to figure something else out, and that we'd likely need a special education attorney.  My exact words: “over my dead body will Sammie B be in that classroom.”  It was not a place where learning was happening.  During our (very very short tour), one child was running madly around the room while an aide chased, one child was trying to stab himself with scissors while an aide tried to keep him from doing so.  It was mayhem.  When I asked the teacher if she'd ever had a kid with a physical disability like CP, she said she hadn't.  Nor did she seem particularly excited about the prospect.  She seemed put out.  Annoyed.  No thank you. 

Other than that classroom (the "oh hell no" classroom as I started calling it), the only other option the district gave us was to put Sammie B in a mainstream kindergarten class with 25 - 30 kids, and one teacher.  We knew that wasn't right either, particularly since Sammie B meets the kindergarten cutoff by only 6 days, and would be the youngest in her class.

Sammie’s teacher had always said Sammie seemed to shut down in the group.  They told us at her IEP that she was mostly speaking in one word utterances at school (while at home, she was saying things like “I need a stethoscope to listen to your heart!”) and that she wasn’t participating in the group, just watching and didn’t seem that interested in the other kids.  The speech therapist (who spent one:one time with her as part of her IEP), however, said she was "bright, inquisitive" and had a "sense of humor beyond her years" and that she really "shined in one on one settings."  At her IEP though, the OT said something that made a light bulb go off for me . . . when talking about Sam’s interest in the other kids, B and I said, “we don’t understand what’s holding her back at school.  We see her approach other kids at the pool and in other contexts,” and the OT said, “well it is important to remember she’s in a classroom of kids mostly on the autism spectrum, so while she may be interested, they aren’t reciprocating and she has no typical peer models.”   And then, I started thinking . . . maybe she's not trying because many of her peers are not reciprocating.  Maybe she needs to be with typical peers modeling typical social behavior.  And I thought about how they said she "shut down" and I wondered if it was simply the group size, or the chaos. I struggled. I tossed and turned and tried to figure it out. 
We saw a developmental pediatrician who again confirmed that cognitively, Sammie belongs in an inclusive setting.  He gave us tons of ideas of how to best support her in that environment, some of which I raised at the IEP and the team dismissed (you know, like ideas about how to be proactive -- like working with her to learn to type since handwriting will likely be a challenge; they said we needed to wait until it is actually a problem . . . you know, like wait until she's struggled and failed . . . before we could get technology assessment . . .bullshit I tell you).  We tossed around the idea of selective mutism, trying to figure out why Sammie is such a chatterbox at home but would barely say anything at school, and knowing that it stems, at least in part (probably HUGE part) from a confidence issue.  She knows she's hard to understand.  She knows in a classroom of loud kids (or any sort of chaotic environment) she can't say what she needs fast enough and clearly enough for her voice to be heard (at least not all the time).  And that holds her back.  It keeps her from trying. 
After a lot of struggling, thinking, exploring, talking to her developmental pediatrician (who also happens to be a friend we trust implicitly), we knew.   This program that we had deemed “fine” (and to be fair, the school program was only 2 hours and 20 minutes a day and we’d decided for now, that was okay because it allowed us to do a lot of private therapies and activities outside of school) no longer was.  It was holding her back, in ways we didn't completely understand, but it was. 
And so, I did what I do, and I went into intense mama mode.  Researching.  Figuring out alternatives (particularly after we didn’t get into the amazing charter school lotteries).  I cried a lot.  My mom listened to lots of crying and volunteered to fly out and tour schools with me or to pay for a lawyer (God Bless Gigi!) 

I lost sleep.  Trying to figure out where she would thrive.  Trying, as I often do, to "figure her out" so we could find the place and environment where she would thrive.  I called school after school, mostly to learn that the campuses weren't accessible.  The private schools in our area that are focused on special needs cater to a (largely) autism population, and we knew that wasn't necessarily the right fit.  Most other private schools (particularly religious ones) are in old buildings with stairs.  A little Lutheran school near us sounded PERFECT on the phone.  They said they only had one step up, but they could put a ramp up (!), and they'd love to have her (!).  Then I drove by.  And the entire playground was mulch.  No way could I sent my child to a school where she can't play on the playground. So, defeated, I sat in my car in the Lutheran school parking lot, and I cried. 
And then, we went out for ice cream one night.  We always ask Sam if she wants to take her walker places, and she usually (okay, always) refuses.   That night, she didn’t.  She said yes.  So we loaded it into the van and off we went.  When we got to the ice cream place, we put her in it, and she proudly started walking to the store, but then spotted a family with two little boys outside and stopped in her tracks (this has been a theme; she wants to use the walker, but freezes when she sees new people; we don’t know what this trepidation is, it just is).   We encouraged her to keep going, and she did.  And then one of the little boys ran over to say “cool! your wheels light up!” and they LOVED her walker.  The dad struck up a conversation with us and said, “where does she go to school?”  That question came at a time when I was struggling and crying and talking to lawyers and had no idea where Sam would be in school, and I sort of said that in a nutshell and told him we were really struggling.   And he said, “oh you should call [his son’s school].   Really.”   It was an amazing moment . . . because he didn’t assume that because my child was in a walker that she belonged at some other school.   That we should call his son's school.  There’s so much beauty in that.
The next day, I called.  I’ve always said we want Sammie in the classroom or at the school that wants her.  With the educators who see the gifts that SHE has to offer not just the extra ‘work’ her challenges might bring to them.  And guess what?  They wanted her.  The director explained to me that she founded the school on a model of inclusion, and while the few special needs kids they’ve had over the years have mostly been kids with mild ADHD or speech issues, having Sam would be a wonderful opportunity for her staff and the other kids to grow and learn.  That Sam would offer so, so much to the school. 
We toured.  We loved it.  We made the decision - a hard one - to pull Sammie out of public school and send her to this private one (which sadly, is only for one year -- she’s in a class for 4 and 5 year olds who wanted an extra year before kindergarten, they don’t have kindergarten, so next year we are back at square one).  There are 18 kids and 3 teachers, and our nanny still goes as Sammie’s aide. 
A week before school started, we took Sammie in to meet the teachers, see the school, and drop off her equipment.  The night before, I had a panic attack.   We were pulling her out of a public school with “experts” like physical and occupational therapists, and putting her in a program with none of those experts.  It may sound silly, but I laid in bed, panicking, and thinking “no one will help her with scissors!  They aren’t trained to do that!  She needs an OT there. . . . etc. etc. etc.”  Panic panic panic. 

But we suited up (Sammie in a her "fancy white dress") and we headed to meet the teachers. 

Mia is the cutest photobomber EVER.  She rarely lets us take a picture of just her.

That meeting was everything I needed it to be to quiet my panic.  Sammie played while B and I sat with the teachers for an hour and a half and just talked.  I told them about Sammie.  Her journey, her challenges, her quirks, her gifts, her talents.  They asked me what our goals for her were, and I explained everything about last year and how we knew something was holding her back because she was a different child at school than at home, and I said, “so our goals for this year are (1) confidence and (2) friends.  the rest is just icing on the cake.”   It was a beautiful conversation, there were tears (not just mine). They asked what she was interested in, and listened.  One of them said she'd go home and drag out some old princess costumes in her garage to add to the pretend play area for Sammie. They listened.  Really, really listened.  Not just to what Sam can or can't do, but to who she is and what she has to offer. I walked away knowing this was the perfect place for Sammie. 

This Sammie. 

Crazy, funny, silly, magical Sammie. 

Here’s the thing.  We find ourselves on this special needs journey without warning and we feel lost, at least in the beginning.  And we trust the experts because, well, we know or feel that we know nothing.  We need them to guide us.  We expect the PTs and OTs and STs to tell us what we need to do.  But somewhere along the way, we learn that WE are the experts in our kid, and that no amount of expertise or training can replace what (at least for us) we’ve found Sammie really needs. . . an environment of community, empathy, and love. 
We've spent entire DAYS in her IEP meetings, spelling out objective goals and listening to all the things our girl struggles with.  But we accomplished more in that hour and a half sitting on the circle time carpet in the floor of that classroom with Sammie’s three new teachers, just talking about who she is, not what she can or can’t do, and what our hopes and dreams for her are, not our objective goals (like accurately drawing a circle in 4/5 attempts . . . . seriously).   We walked away knowing this was going to be a great year.
I don’t know what next year will bring, but I know that I am so, so excited about this year.  So far, she is thriving.  I had warned our nanny that she might be ridiculously quiet at first.  She wasn’t with Sammie at school last year, so mostly just knows the chatterbox from at home (Hannah started with us in June).  I wanted her to be prepared to really need to draw Sammie out to participate.
And then, they came home after Day 1 and Hannah’s first words to me were, “that was amazing.  It honestly exceeded any expectations I could have had for the entire year.”
Sam loves it.  Loves it.  She’s thriving.  She belongs in exactly this type of setting.  Some snippets from her days (Hannah is writing notes to me every day so I know things they do, and she’s having Sammie help her by telling her the things about her day she wants me to know!):
[I cannot tell you how many tears of joy I’ve shed reading these notes each night.]

On the first day, they went around for each child to say her/his name and favorite food [mind you last year, Sammie did not ever speak ONCE in the group, other than “yes/no” answers].   What did our girl do?  She said, “I'm Sammie B.  I like hamburger happy meals!” [Bless her soul!]  That same day, she wheeled herself up to the sink and washed her hands all by herself.  She asked the other kids what was on their lunch boxes, and showed off her new princess one.  She worked on spelling her name and did really well! 

Snazzy First Day of School Outfit
[And after hearing this account from Hannah, I sent B an update and said, “how are we going to afford private school forever?!!!” I'd literally sat home watching the clock all morning, waiting for them to get home; silently panicking some more (again thinking "there's no therapies! no therapists!  what have we done?!") But Hannah came home, shared those stories, and again, my panic -- gone.]
That night, in the bath tub, Sammie said to B, “do you want to hear all about my new school?”  (of course he said yes).  And then she said (without taking a breath), “I washed my hands!  I went outside for snack! I played with letters!  I dressed up as a princess!”   The most she’s ever said about a school day, ever.  B asked her about the other kids, and she said, "they are really really really nice.  And fun!"

Hannah is finding that she’s standing back and observing much more than she thought she would because Sam is really doing so well with the other kids and her teachers.  She’s raising her hand and sharing and answering questions.  (my heart!  my heart!) 
She’s carrying on conversations with her teachers, she’s asking friends to play with her (my favorite note from Hannah:  “She wheeled herself right up to a group of girls and said, “Do you want to play princesses with me?” (they said yes!) then she said, “Good.  Can we all be friends?”) (my heart!  my heart!).  She and one of the little girls also had a pretend “princess ball” one day.
She’s mostly wheeling herself around the classroom in her chair but also scooting a lot when they do floor play (her teachers are amazed by her speed and increased confidence when allowed to scoot).   One of her teachers told her she’d scoot around with her, and did.  Hannah texted me a picture in the middle of their day of Sammie and her teacher, scooting on the floor, together.  Other kids are choosing to scoot when they play with Sammie.  (My heart! My heart!)  A little boy planted a big kiss on her!  (he asked first, and she said “yes!” and pointed to her cheek!) 
Thursday was Pirate Day at school (National Pirate Day actually) and on Wednesday, she told me, “Tomorrow is Pirate Day, I should dress like a pirate.”  And so . . . . you now where this mom headed . . . to the costume store.  Her wish is my command.

Sammie B taking participation to a whole new level.  (She told me, "my friends will laugh when they see me and say 'oh look!'")  She’s officially talked and shared more in two weeks at her new school than in the two years at the old school.  Her love for learning has taken off (again).
See, back before Mia was born, I used to work with Sammie a lot on letters and numbers. She loved it and would sit and “work/learn” with me for big chunks of time.  In the last year though, she’d seemed to lose interest. I blamed myself for not doing as much one on one with her, and beat myself up.  But guess what?  It’s back. Frankly, I think the “letter of the week” approach at her old school (which I now know research doesn’t really back up) and the very static curriculum bored her, and that instead, the way that the new school is teaching things more through play and experience and in context . . . has renewed her interest in it all.  I’m loving it.  As we pulled up to the costume store, for instance, we had this conversation:
Sammie:  What is the name of this store?
Me:  Party City.
Sammie:  Tell me the name one more time, mama.
Me:  Party City.
Sammie:  What letter does it start with?
Me:  A “P”
Sammie:  When we get out of the car, can you show me the sign and the “P?”
(My heart!  My heart!)
While I know hindsight is 20/20 and there’s no sense in playing the Monday morning quarterback game, there’s part of me that wishes we’d done this sooner.  That we’d realized that having “experts” isn’t all its cracked up to be (particularly when you live in massive school district where your child is just one of hundreds, if not thousands with an IEP, and the experts are, um, in many instances, sub-par) . . . but I’m not going there.  Not today.  Instead, I’m just going to soak in the joy over the reports I’m getting from Hannah and the joy I see in my girl everytime we talk about school.   The joy in her eyes, her smile, her voice. 
(My heart! My heart!)
Our girl is thriving.
Here's to this new year.
(And to a little girl that turns five tomorrow . . . . something MY heart isn't quite ready for.)

[After typing this out, hitting post, re-reading it (twice) and thinking about it a lot, I feel the need to say . . . I don't mean to be so hard on Sammie's teacher last year.  It just wasn't a good fit.  It wasn't.  The curriculum was static, the class chaotic, and, legally, what the district offered, was not a fair and appropriate education for Sammie in the least restrictive environment.  It just wasn't.  Sammie wasn't thriving, Sammie wasn't fully accessing the curriculum, and the teacher didn't seem to have the ability to make that happen.  We didn't even fully understand it.  We didn't even fully understand what was missing  until now, when we can see what could be.   The difference.  It hurts me that we have to be such trailblazers along this path, but I'm astounded that educators (even those in special education) seem so perplexed by a child like Sammie.  Why are we blazing trails?  The teacher may not deserve all my harshness, but to be sure, the district does.  What they offered was inadequate.   And the IEP team, that pretended to be so very vested in my daughter, changed their tunes so very, very quickly when we didn't agree with their recommendation.  It wasn't a team decision.  It was crap.   We got a bunch of company (district) lines [like (after acknowledging that Sammie seemed to shut down when the bigger behavior problems from other kids were occurring, "but don't you think any preschool class would be chaotic?  Don't you think she'd be overwhelmed in any class?"  (imagine that in the most condescending, "you're just a mom, we're the experts!" voice you can imagine], and although they'd acknowledged their feelings about how the "oh hell no" class wasn't appropriate for Sammie verbally in the IEP, the second we indicated we were not going to sign that IEP, everyone acted like a bunch of assholes and wouldn't "own" any of their comments during what we thought was a "team" meeting.  A crappy, disappointing, and upsetting situation.  One that left a horrible taste in my mouth as Sammie wrapped up the rest of that school year (May and June) in that classroom.   In any event, the proof is in the pudding.   She's thriving.]

Four Years of First Days!

Two weeks ago, Sammie B started a new school (more on that to follow! It's going amazingly well!)

I love looking back at the "first day" pictures from past years.  Our girl just keeps getting more and more amazing every single day.   Each year brings more magic, and I know this year is going to bring more than I can possibly imagine. 

I cannot wait to tell you how amazing these two weeks have been. And it's only been two weeks!

December 2010 - Sam's first day of her Early Intervention Center-Based program at UCLA (oh how we miss that place!); she'd just turned 2

October 2011 - Sam's first day of preschool - She'd just turned three (and little did we know when I took this picture that just hours later, I'd be in labor with Mia!)

August 2012 - Sam's second year of preschool - Not quite four.  And the biggest smile yet!  (She was mostly excited about her snazzy new dress -- this is EXACTLY around the time that Sammie started having some real opinions on fashion!)
September 9, 2013 - Sam's first day at her brand new school, in a pre-k class for 4 and 5 year olds.  So very proud of her new princess lunch box from Gigi. 
Not to be left out, little sister Mia was excited to see Sammie off on her first day (and also wanted to wear something special!).  

That evening, we celebrated just as we have every year (and just as my mom did for me each first day of school for my academic career) -- with a small present and a mini-party (cupcakes this year!). 

It is a tradition that I LOVE and one that I am so thankful that my mom did for me.

Here's to an amazing new year for my big girl.

I can't wait to watch your year unfold, Sammie B. 

Sunday, September 8, 2013

New Wheels New World

Two weeks ago, Sammie B got new wheels.  We proudly took those wheels out for a family walk that night, and I posted this picture on Facebook, with the comments below (yep, if you are Facebook friends with me, much of this is old news to you . . . but not all of it!).

Sammie's New Wheels. Some thoughts worth sharing . . . 

Everything about this picture makes my heart smile. Everything. Certainly, if you'd told me four years ago that today I'd accept delivery of my girl's first wheelchair, I might have wound up in a heap of tears on the floor. But here's the thing . . . while Sammie has done amazing in her gait trainer/walker and is still making strides toward independent walking, those things aren't practical for long distances for her right now (imagine being four years old and trying to maneuver Disneyland in a walker), and we've pushed and pulled her in strollers and wagons and on tricycles for nearly five years. She's dependent on us for her mobility. Those options, while fine sometimes, are no longer age-appropriate. Her peers see a stroller, and they think "baby" or "toddler," and she is neither of those things.

The first time we put her in a manual chair, she was a natural. Moving the wheels like she'd been doing it her whole life. See, I thought the first time I saw her in a wheelchair, I'd cry. And I did. But they were tears of joy and I truly felt like my heart was going to burst with pride. I know B felt the same. The lump in his throat was obvious.

This chair (and the power one to come in a few months provided the insurance company doesn't make us jump through endless hoops) has so much to offer our girl. An age-appropriate means of mobility. Independence. Amazing.

I look at her, and I see an amazing little girl sitting taller and prouder than I've ever seen before. My girl. One of the most magical little beings that ever lived.

But I also can't help but look and worry that the rest of the world will look and see a chair first, little girl second, and that hurts my heart. Before I posted these pictures, I also wondered if people (our friends and family included) would see the chair and wonder if this meant we were giving up on other forms of mobility, like independent walking. It does not.

It does mean, though, that we accept our girl (what's not to love and accept?! have you met her?!) exactly as she is -- right now -- and we want her to have every single tool she needs to navigate her world in as age-appropriate and independent way as possible.

So look at this picture. Smile. Marvel at how cute my family is.  And promise me that you'll look in a way that you see my family first, the chair second.

I hope that little by little, we (along with our girl and all our amazing little friends on wheels) will change perceptions.

For Sammie B is one amazing little girl. The chair is but a part of her. Maybe a "forever" part. Maybe not. This is her story, and we are just lucky to be part of it. And, I know, with all that I am, that her form of mobility in this life will not determine the richness of it.

Cheer on, Team Sammie B. Cheer on! 

* * * 
As we walked around the block that night, Sammie yelling "where are the neighbors? I wanted to show everyone my new wheelchair?!" and B and I just bursting with pride, I thought back to a day nearly 5 years ago.  Sammie B was just 20 days old, and freshly home from the NICU.  We'd packed up the stroller and headed out for our first walk around the neighborhood (for bagels and coffee) as a family of three.  As we pushed her, B and I laughed at how proud we were.  B said each time we passed someone, he wanted to say, "hey, look at us!  we have a new baby! I'm a dad!!"  There was an undeniable bounce in our steps.  We were beaming.  We fought over who would push the stroller (ultimately, I got to push to the bagel place, he pushed home).   We have both remembered that first walk fondly and laughed about it when we've seen other new parents doing a similar "pride walk" with their fresh little babies.   We were so, so proud. 

And here's the thing . . . this first walk with Sammie and her new wheels?  It felt the same.  My girl was sitting tall and proud, and B and I were thrilled for her and with her.  There was an undeniable bounce in both of our steps, and we were beaming.  And once again, we both wanted to push our girl, and took turns. Even Mia took a turn at pushing. 

We are just as proud of our Sammie B today as we ever were.  She's amazing.  

For those following along on Facebook, you also know that the chair as delivered had some problems and we had to send it back.  Fortunately, they were (we *think*) resolved easily, and we have the chair back and are just waiting on one new part to come in.  I was devastated when we had to send it back.  So angry and sad.  I felt like we'd given our girl this amazing gift of mobility and then taken it away.  I stayed up that night and researched and researched trying to figure out what was going on with the frame and what needed to be done. I wrote a scathing email to the sales rep who ordered the wrong parts and allowed the chair to be delivered when it was so clearly not put together correctly, and begged him to just fix it now.  And alas, we got it back, adjusted, and working, within a week . . . . 

After picking it up, Sammie and I had some time to kill before another appointment and happened to drive by a Kohls.  I asked her if she wanted to go in and buy school clothes, and she was game.  And guess what? My girl was a maniac in there.  I was both exasperated with her and elated.  See, Sammie's never been able to run away from me in a store . . . and here she was, wheeling away, and me chasing.  Wheeling over to stacks of shirts and saying, "I want this one.  It is purple, my favorite color!  Do they have my size?  Look for a 5!"  She picked out a ton of clothes, moved freely in the store, and had me giggling the entire time.   We walked past the men's department where the suits were and she yelled, "They sell prince suits! We should get a new one for Dada!"  As I was paying, she wheeled away and I looked over and she was opening a chocolate bar and said, "Mama!  Look what I found!"   (Later that night when B asked her if she'd had fun shopping, she said, "I was out of my mind in there!" Indeed she was.)  

That shopping trip will easily go down in my favorite memories of all time.  

The first time I chased my Sammie B through a store.  

The first time I said to her, "NO! Sam, put that back and stop wondering off!"

The first outfit she picked out all on her own, when given free reign of the store. 

Girl has style.

* * *

The next day, Sammie's nanny took her (in her new outfit, of course) to the Science Center.  During the day, she sent me a video of Sammie maneuvering herself up to the exhibits to look.  All by herself.  And I sat in my office and watched that video over and over and cried some of the happiest tears of my life.  I called my friend into my office to watch the video with me again.  I said, "do you know how big this is to me?"  And she said, "I do.  Right now, I see a little girl whose body is finally being as independent as her mind and spirit have always been."

And with that, I cried some more.  

* * * 

These new wheels are a beautiful thing.  More beautiful than I ever, ever could have imagined. 

So here I am, sitting in my living room, with the cutest, tiniest purple wheelchair parked next to me.  It has pink and purple princess crowns on the backrest, and it is so, so cute.  So now, looking at my girl's first wheelchair, while she sleeps soundly in another room, all I can think of is how very, very proud I am to be her mama, and how very, very much promise and possibility comes with this little chair.  And how very, very Sammie B it all is. 

So very Sammie B.  

Full of style and possibility.  

Cheer on Team Sammie B, Cheer On!!!

And tomorrow, I send this big girl off to a brand new school, with her brand new wheels.  Be still my heart.