Influenced

Playette has been in a typical daycare or preschool environment for nearly four years now.

Our purpose in going that route was to expose her to other children, since she had no siblings at home, and get some positive influences from her typically developing peers.

For the most part, we've been pleased. She's great at playing and learning amongst other children and has plenty of friends that she asks for by name. She also has friends with varying unique needs. We're all about equal opportunity over here. One of her buddies in her class last year in CA uses a wheelchair and I loved that, to Playette, she was just one of the gang. Which is as it should be.

Many adults could stand to learn a lot from these kiddos.

Along with the great stuff, we get some gems that we know can only have come from being in school.

The latest is the evolution from "uh-oh" to "OOOOOHHHHHHH!"

It cracks me up. Let's say you drop something. She is quick to point and yell, "OOOOOHHHHHHH!"

Like she caught you do something wrong and she's about to tell or as a warning that you're about to get in big trouble.

It's funny because, really...how much trouble am I apt to be in for dropping my keys? And who is going to punish me for that offense, exactly?

I love that little nut.

=====

We just got in from vacation last night, so we're buried in washing tons of warm-weather gear while also trying to put together something that resembles Christmas morning for the kidlet.

Sure it's two days later and after 6pm.

How much you wanna bet she won't care?

More later...

S'up, Y'all?

I honestly didn’t mean to just straight disappear for the most part after the end of October, but the last couple of weeks have been some doozies in our household. There’s just a lot going on and I’ve barely had the thought to blog, let alone carved out the time to actually do so.

Work is very busy. Well, sort of. I mean, there’s lots to do and way more confusion than I would like, but…eh, it’s complicated. I’ve had to take off a couple of sick days lately. One day last week for me, one this week for Playette, and then another will be next week for Playette in the morning (She’s slated to see some fancy feeding/swallowing doctor – not a therapist. Don’t worry, I’m confused, too.) and I have an appointment of my own in the afternoon. Best bet was to take the whole day even though I know that will be one hectic day between going to the city, back home to drop her off, and back into the city again. Yeesh!

Tomorrow is a holiday for us, so yay for a day off of work, but since Playette also doesn’t have school, we’re going to try to make the most of it by squeezing in a much-needed dentist appointment (pray for me) and then, in the afternoon, I get to take her to her new SLP. She’s had two appointments so far, but since they’re at 3pm, the sitter has been taking her. I’m glad to have the opportunity to finally meet this woman who is, to me, the representation of all of my dreams of the past year finally coming true.

See, we had out eval with Sara Rosenfeld-Johnson last November, I believe, and during that process, we got connected with a Talk Tools certified SLP that we were able to see twice before we moved. Even then, we had to drive over an hour to get to her because there was just NO ONE closer and I believed with my whole heart that Talk Tools was the way to go for Playette. I liked the SLP a lot and we tried to make an adventure out of it so that the early morning drives didn’t feel so daunting. As you all may recall, we then had the audacity to MOVE at the end of December once BD returned from his deployment, so that marked the end of Speech Therapy for a very, very long while.

Which sucks.

Because what is my daughter’s greatest challenge (well, besides using scissors which is the current bane of my flipping existence)? SPEECH.

When she started school in January, she did get some time with the ST there. But then, y’know, we took her out of that awful place in April after the teacher used the R word in the IEP meeting AND the bus drivers played that precious April Fools practical joke. Such a shame to leave such sweet folks, but I digress.

So, the little bit of ST she was getting disappeared. I was so torn up at the time about what was going on between us and the school district that I didn’t pursue their services at her private preschool. Plus, I just KNEW that we’d be coming up on one of the many, many waiting lists we were on for ST…any. day. now.

Ha! So much for that. If you are the parent of a child with special needs, you have probably noticed that there are a lot of children out in the world with “speech delays.” It’s a pretty common diagnosis. So, getting in to see an SLP, especially one with experience dealing with oral motor issues, not to mention the added bonus of being familiar with or certified to utilize Talk Tools? In a very congested area? Yeah…waiting lists. Long, long, long waiting lists. I made more phone calls than I can even recall, trying to track down someone, anyone, that could work with my girl.

Thankfully, we were so grateful to have Beth come by this past summer (housecall, woot!) to help me learn how not to be so overwhelmed by the whole oral motor process. She is a wealth of information and I am inspired so much by how well her daughter, Hannah, is doing, along with her other children. I hope I can be half the mama she is one day.

To bring you up to speed on this new SLP we have, about a month ago, she called me out of the blue and said that Playette had come up on her waiting list. I was shocked. She went on to tell me that she’s Talk Tools certified. I was stunned. The issues then became dealing with insurance (gag) and the logistics - her only openings were on days/times we were otherwise obligated, plus her office was REALLY far away.

Over the course of a couple of weeks, we got it all worked out. The insurance thing made me want to stab my eyes with a spork, but eventually that was rectified. And then, this woman offered to do some shuffling and got us in not only at a time where we could make it, but also at a closer office! Where has she been all my life?! Or at least for the past 10 months?! So, once I coordinated with the sitter, we were set. Yeehaw. Get along, little doggie. Forward momentum. All that good stuff.

So far, Playette has been twice and things are going well. I’m actually excited to meet this life-saver of mine tomorrow and see what she has to say about possible next steps. As it stands, I still have a massive drooler on my hands (and, yikes, winter is approaching and wet + cold = ugh), and you know that noise I mentioned that started last year? It STILL has not made a graceful exit yet.

And if you think that over time that it would just blend into the background? You, dear reader, would be incorrect. It’s just as grating as it was the first day she started. More so, in fact. More. So.

I felt like I wanted to write more than just about this topic, but my brain is all loopy at the moment. When it comes to me, I’ll be back. Promise.

rOTten

I had to fire the Occupational Therapist yesterday.

It was our second visit with her. I thought it was bad last week, but this week was even worse.

I thought she couldn't remember my child's name because they had just met. I gave her some leeway. Even though I corrected her over and over and over again.

I allowed her to discount what I knew to be true about my child only so that she could eventually figure out that I was right after all.

I sat in the room, amidst total chaos, and realized that there was no way that my daughter was ever going to be able to focus in this environment.

I heard her say that our chief concern was something that she had no idea how to address.

I watched her get frustrated when my child didn't answer when she continued to call her the wrong name.

I saw her watching the clock the entire time and then end each session early.

I heard her ask me to change our appointment time and then look bothered when I said that would not be possible as we had a conflict.

I saw her discount my child's abilities. "Oh, that's much too difficult for her," she said. "Really?" I replied. Because she does something similar at home and has been for months.

I'm sure there was more.

But any of these should have been enough.

So, in my most calm voice, doing my best to protect her from my truest emotions, I politely told her that we would no longer be needing her services. She was welcome to do whatever she had planned with that precious 45 minute slot after all. Because we wouldn't be back.

See, here's the thing. My child is almost four. She's been seeing therapists in some capacity since she was six weeks old. This was not my first trip to the rodeo.

As much as I don't want to be that mom, that mom gets things done. She knows that her time is precious, as is her child, and wasting resources gets us nowhere.

It's tiring, draining, being that mom.

But that mom? She's getting 45 minutes of life back next week.

Maybe we'll go get ice cream instead.

Using a spoon counts as OT, right?

In all honesty, I'm proud of myself. Part of me wanted to just give it more time. Maybe another session or two. This place is so close to the house. They're just getting to know one another. It'll be awkward when we come back to the office for Physical Therapy. Maybe I'm just being too quick to judge. Are my expectations too high?

And then I came to my senses.

Trust yourselves, ladies.

You have instincts for a reason. Your kids deserve the best and so do you.

And here I was thinking that it was just my kid that was getting therapy.

Lessons are everywhere.

Mucho Stuffs

Happy June, y'all! Lots of new, fun, milestone-y, gut-wrenching stuff going on this month. Yay! and Yay?

We've been running here, there, and everywhere lately. I keep meaning to post more, I swear. But, eh. There's life to be lived. You know how that is, right?

What's good about that is that I have plenty of pics that are backlogged in our camera. And, because I am a giver, I shall share them.

To get started, there was this event recently called "A Day in the Sky" and the deal with that is that they offer rides in teeny, tiny planes to kids with special needs. I've heard that it's fun and anything the kids enjoy, I'm all for.

But, personally? You couldn't pay me enough to get in one of those things. It would be the opposite of fun for all involved.

So, surrounding the flights, there's a carnival type atmosphere. Food, drinks, cotton candy, petting zoo, clown, music, info booths, etc. This year, though, there were no itty-bitty plane rides. It wasn't me, I swear. I heard a rumor that hot air balloons were substituted (also not on my bucket list), but those weren't going on when we arrived.

No matter to us. It was a beautiful day out, so we let Playette roam and explore. It's always nice to be amongst peeps. Fewer stares and crazy questions and all that.

I call this one "Aww, I Think She Likes Us."


Watching the performers.



A new toy and then...a mission.









Shoes and socks are for suckas, apparently.
When we got home, it was actually nice weather-wise where we live, so I decided to offer Playette a snack on the patio. That sounds so snooty that it's comical. We rarely (as in never) use the outdoor spaces in our home and I'm starting to realize that we won't be here forever and we need to get to soaking everything up a little more.



Mission #2






I guess she was done snacking. Hmph. You would think she'd appreciate my berry cutting skills a little bit more. Shoot, I was proud of that work.

On to a game. We must have sat out there for 10 minutes, playing "Show Me..." First, it was body parts and then we moved on to sign language. Sometimes, she's not up for performing, which I totally get, but when it's just us, one-on-one, she really gives it up. Here are some of my faves:

Nose
Ears
Animals
Car
Colors
Bed

We had part one of our first IEP meeting yesterday and, in it, we discussed Playette's strengths. One of the things that was listed is that she loves to share her knowledge. She really wants people to know that she knows things. Looking back at these pictures, right now, is a huge reminder of that for me.

She's already breaking down barriers and I cannot tell you how proud that makes us. You know, it's one thing for us to tell people what she can do and to know that others are probably taking our responses to their questons with a heaping pile of salt, but when they see it for themselves? When they realize that they can't underestimate our daughter or any other child based simply on a diagnosis? You can't help but feel vindicated.

With a side of nanny nanny boo boo.

Because I'm that mature.

And, in so many ways, we've only just begun.

50/50

It's eval time around these parts.

Not my favorite time, honestly.

If you've never had a kid with any type of difference from the typical, then perhaps you might not know what it's like to have your child evaluated on their skills and abilities at least twice a year.

You're not missing anything fun.

It's just one of those things that comes with the territory of special needs.

Ick.

I mean, don't we all have those? Special needs?

To be fair, I probably won't like any term that has the express intent of picking out something different about my kid and setting her apart.

Difference are supposed to be cool, right?

Anyway.

These evals don't usually tell you anything you don't already know about your kid, but they do tend to put them in interesting formats. Like percentages. With "less than" symbols. Fun, right?!

Of course, you could opt out of this whole process. BUT it's all tied to services. So if it's services you want, evals you will get.

Even if you're like me and you're not 100% sure that you want services, maybe you're also like me in that maybe you might want something someday and if you give up the chance now, you fear that you may be giving it up forever.

And it's not even my chance. It's Playette's chance. That's a lot of pressure.

No one said this thing was fair or easy, y'all.

So, back to the 50/50.

We had an evaluation at home a couple of weeks ago. The "School Psychologist" (still confused about that title) came over and observed Playette while talking to me. As I was sitting on the couch, it hit me.

Are we supposed to do well or not?

I really didn't know.

One one hand, doing poorly would secure her eligibility for services.

Blech.

But, honestly, sometimes Playette just doesn't do her best in these types of situations. She rarely shows strangers who pop up bi-annually for an hour what she knows how to do under everyday circumstances. They get to see Shy Playette or Show Guests to the Door Playette, and not the girl we see everyday.

On the other hand, doing really well might be what the evaluator needs to see in order to recommend that her Least Restrictive Environment is the kind of program in which we envision her being.

That sound you hear?

That's my head exploding.

Messy stuff.

Next up...Preschool via FAPE.

Pigtails

Love them.

Can I just tell you again.

LOVE. THEM.

Even with the struggle of trying to obtain the perfect center part on a squiggling, wriggling child...I adore the finished product.

Last year, at the NDSC Conference, I sat in on a session that talked about reading and children with Down syndrome. They mentioned using a tactic that, as I recall, was like creating an A Day in the Life book for your child. They'd see themselves doing certain things and then the words associated with those actions.

I put that on my to-do list.

Last August.

And then a lot of time went by.

I considered a board book, but the prices shocked me a little and I figured I could do it myself.

So then a lot more time went by.

In March, I woke up one day determined to take pictures. "Let's get her waking up," I said, "And then on the potty, and eating breakfast, and getting dressed, and going to school, and in the car, and dancing, and in the tub, and at PT, and...and...and..."

BD just gave me a look. That look. Do you know that look? Maybe you're the person in your house with the big ideas. Or maybe you're the one giving that look. Hmph.

Anyway.

I did take some pictures. Lots of them, actually.

Remember, this was back in March.

It's May, y'all.

I still don't have a book.

This all came back to my mind because Playette's SLP came to me with a little photo album recently. It was filled with some pics she had taken at the daycare. If you flipped through the book horizontally, on the top was the photo and on the page below were blocks describing the actions along with words. Pretty cute, actually, and I appreciated her efforts. For example, with a photo of Playette dancing, it had three blocks. One with Playette's photo and "Playette" underneath, one with a group of cartoony-like people that said "friends" and then the last block had a treble clef and the word "music."

I ended up printing a lot of the pictures I took in March and adding them to the book that the SLP created (go, me!). She, in turn, took the book and my notes on what I thought the blocks could say and updated it. It's a back-and-forth process, sure, but at least it'll be done.

Or, well, sorta done. I still have my idea in my head that I want to follow through on so that it'll be all slick and for real done-done.

But, I mean, I know I'm not exactly known for my quick follow-through and craftiness, so the little photo album will be just fine for now.

So what does all this this have to do with pigtails?

Well, see for yourself:

Finding the Humor

Yesterday, I had a conversation with our Service Blocker Coordinator.

She called me out of the blue. Let's call her "Angie."

When the phone rang, I had to make a quick decision: To talk or not to talk.

What's more painful? A conversation or a voicemail followed by frequent failed attempts to get her on the phone only to have that very same conversation?

So I answered.

She was under the impression that I wanted to talk to her. Grapevine and all that.

I told her no, that I was quite happy with my head stuck firmly in the sand regarding Playette's transition.

She'll be three in about two months and that's when you get the boot from Early Intervention and move into the Realm of the Big Kids. At that point, she is eligible for different services and Playette could go to public preschool if we wanted her to.

I don't know what I want.

But, what was funny to me what that Angie went into this set of questions. Self-help type stuff. At first, it seemed like nothing, just small talk, but then I was all, "Uh, Angie, what are these questions?"

She was filling out some form. Of course.

Damn, Angie, could you ask me first? I mean, really.

So, one of her questions, which apparently is attempting to determine whether Playette is going to be eligible for services after she turns three (she will be, no form required) was, "Can she comb her own hair?"

What?

I CAN BARELY COMB HER HAIR AND I'M 30 YEARS OLDER THAN SHE IS!


Gosh, I'm gonna miss Angie after we transition. A new Service Blocker Coordinator? However will I cope?

The Other PT

Or do you prefer TL? Playette's daycare does.

They're all, "We don't say 'potty training' because we feel that it gives the wrong impression. 'Toilet learning' is preferred."

Well, alrighty then. Whatever gets my kid outta dipes.

So.

Lisa was talking about it.

Ds New Mama wass talking about it.

Figured I'd jump on the bandwagon.

I've been learning quite a bit from reading about other people's experiences. In fact, Lisa gave me the term that I think best describes where Playette is currently: schedule trained. And the way we got her there is not too unlike what Ds New Mama is doing with her daughter. Except all I really know about Elimination Communication is that when Playette stops what she's doing and makes the silent grunt face, we know she's eliminatin'. I'm not sure how people catch a child pre-urine. We just seem to get lucky (sometimes) with that part.

Anyway, going back to the beginning, BD started putting Playette on the potty 1x/day (right after dinner) last year. I think I was away on reserve duty so it was May and she was about 22 months old. Since then, she's done awesome and will sometimes alert us to her needs by signing potty/toilet (we say potty with her). She is becoming more and more routine-oriented in many facets of her life, so it's no surprise to us that her post-dinner trip to the potty is the most reliable. Some people have a mint. Playette chooses to cleanse her palette a little differently.

When we addressed what we were doing at home with regard to making the transition from diapers to underwear at Playette's IFSP meeting in July, we got a lot of this:


Ah, blank stares to the sounds of crickets chirping.

Gotta love a good IFSP meeting.

If you've never been to one, feel free to join one of mine any time you want. If you're not stressed out at the end, you're bored to tears. Awesome.

So. Once our "team" came to, there was a lot of stammering which essentially resulted in zero support outside of the home (she's in daycare full-time) until about 6 weeks ago.

In the meantime, we continued with the post-dinner trips and then, one day a few months ago after a trip to Ikea, we upped the ante.

Not able to resist a deal, we bought 2 of these colorful pots at $0.99 each. One for the trunk of the car and one for the upstairs bathroom right next to her room. So with those and the cushy one we'd been using downstairs and the cute little mini-toilets at daycare (I don't know what I said differently one day, but they finally caught on and started offering her the toilet), we started seeing some more progress.

While this has been a long road, it really hasn't been a stressful one. We've taken it verrrry slowly. No pressure.

Sure, we get frustrated when she doesn't ask to go and instead we're alerted by a strange smell in the room. Who wouldn't?

But we enjoy the heck out of the successes. Two weeks ago, when we were out to brunch on Easter, she signed potty at the table and actually meant it. I'm telling you, this little girl is better than me with the whole using a public bathroom thing.

Do I think that she'd be rocking some Dora drawers by now if she were typically developing? I sure do. But she's not and it's just going to take longer. We're ok with that. In fact, good or bad, I never really expected her to be out of diapers by age 3. I mean, when we moved to CA, I learned that diaper reimbursement was available essentially once a child was out of the early intervention program and I figured that's just the way things were. It was going to happen later and that was that. I've seen some really bright kids make the transition later for varying reasons. They all get it eventually and it's so not a race.

Honestly, now what I fear is that we've simply given her options. Diaper, pull-up, or potty? I don't think she minds where she pees so eventually we just need to bite the bullet and give panties a try. Scary thought.

But, our weather isn't very conducive to the run around nekkid approach, so I can't say that we really know how to take the next step anyway.

So we wait. And cheer when there's #1 and #2 in the pot. We dance (our own unique dances). We wash hands and then we play. Until the next time we see the silent grunt face. At which time we grab her and run.

We're totally winging it.

I welcome any and all feedback.

Words

I've been posting a lot of pictures lately, but not doing a lot of writing. I actually enjoy writing so I figured I'd give it a try today.

Things have been going fine at our house. We keep busy, which is good for the most part. The next few weeks will be more of the same, with a few special surprises thrown in that I'm looking forward to sharing soon.

For today, though, I feel like exploring Playette's Daycare Experience.

Someone asked me the other day about her classroom setting and how she relates to her peers. It's a very interesting topic, apparently, to people who don't have children with special needs. Those of us that do, well, sure, it's interesting, but it's also a major PITA sometimes because we're the ones working diligently behind-the-scenes to make our children's placement look effortless. There's a lot of thought and consideration put into trying to figure out where and when and who and why and, most of all, how.

Currently, Playette is "fully included" in a typical toddler room setting. Her peers are other 2-3 year-olds, most of whom do not have Individualized Family Service Plans (IFSPs). I think one other kid in there gets speech services, but I don't really have a need to know that information so no one has come out and told me that, which is fine by me. That tells me that they're not going out and telling other parents stuff about my kid either. And I like that.

So.

In her classroom, Playette, well, she plays. She reads, she sings, she dances. She takes things down, she puts things up. She pretends and she communicates.

She goes into the room each day, takes off her coat (with some assistance), walks over to the sink, and washes her hands. That's what all of the children are required to do and she is no exception. This routine started back when she was in the baby room and we had to hold her above the sink and wash her hands for her. That was two years ago. Now, she turns the water on, pumps the soap foam into her hands from the container on the wall, rubs her hands together, rinses, pulls the lever on the towel dispenser, rips off what she needs, dries her hands, and throws away the used paper towel.

Awesome.

It only takes a minute to complete, but when you lay out all of the steps like that, it's hard not to feel proud.

One goal, I think, of having her where she is right now is to get certain things to become second-nature, to expend less effort on certain behaviors.

One day a few months ago (woo, time flies!), I was there in the classroom for lunch. I was able to witness how when the children were done eating, everyone got up with their plates, took them to the trash, dumped the waste items, put the plates in a bin, washed their hands, and went to lay down on their cots for a nap.

Wow.

I mean. Wow.

I was so impressed. There was my little girl, doing the same things as everyone else. No hesitation and full of confidence.

Now, of course I realize that she still exhibits delays in her development. I know that now and always will. But I think there's something to be said for keeping expectations appropriately high. I mean, even with me, I notice that I sometimes get a little too excited about things she does. And when I stop to think about it, I realize that maybe I thought she wouldn't be able to do such things.

*gasp*

Me? Her mother? Underestimating her?

Well, shoot, I'm not perfect. Nor have I ever claimed to be. Enlightened by force, maybe, but I still have a long way to go. I get just as irritated with myself for such behaviors as I do with other people I meet, especially therapists and medical professionals.

But you know I have less grace with them, right? They should know better. Me? I'm just a newbie.

I just want my kid to be given chances to prove people wrong.

This girl is smart, y'all. Really.

She doesn't speak, but she signs more than I can understand. She picks things up quickly. She constantly has conversations through babbling that utilize inflection and even humor.

You gotta appreciate a two-year-old with a fake laugh.

More than anything she tries. Very hard.

And that's why me and my fellow parent peeps work equally as hard to give our kids the opportunities they deserve.

It's all about having options, y'know?

So, anyway, when you put Playette up against her classmates, what differences might an outsider notice?

- Well, she still wears a bib (hate!) because she's the only one still actively teething and, thus, is a drool monster, which doesn't work well when it's cold and her two shirts are soaked through. So, yeah, a bib. (that issue deserves its own post)

- She's tied for last place in the height department.

- She's a slower runner.

Aside from the bib thing? Well, that's pretty much me, too, so whatever.

Tongue Talk

I'm sure that most people know that there are certain characteristics that people with Ds share. Just as with any other group of people that identify with one another, while they share some things in common, those things do not make them identical. To a keen stalker observer, though, one may be able to pick out a person with Ds in a crowd. Or you may not. Really.

All people with Ds do not look alike.
Every person with Ds does not exhibit every physical trait associated with the condition.

I just had to get that out.

Y'know, in case I haven't mentioned it here (enough), saying to someone that their child doesn't look like they have Ds? Not really a compliment.

Because if they do, they do.

Ahem.

Really, I wanted to talk about something else tonight, but that damn advocate hat just jumps on me sometimes.


I swear, there's no going back after your life has been changed the way mine has. It's not bad, just different.

I hope I'm still fun at parties.

Anyway.

So, back when I was 31 weeks pregnant with Playette, months before her diagnosis and several years after I stopped my previous blog on which I had a whopping four posts over the course of a year or so (obviously, I didn't have as much to talk about back then), I had a 3D ultrasound.

I remember that experience pretty well. As a frugal person, I was very excited that I didn't have to pay $150 to get it done because I was "fortunate" enough to have this really-minor-probably-nothing-actually thing going on with my baby's heart (so I thought) that got me access to the high-risk clinic with all of its magic technology, gratis.

I had already been admitted to the hospital because I had some funky virus thing happening and I hadn't figured out a way to break free yet. That came later.

So, that day, I only had to be wheeled down the hall with BD at my side to take a look at the echogenic focus (EIF) that had been seen previously during my routine ultrasound at 20 weeks.

While I was an avid internet reader and knew all the right questions to ask at such an event, there was never a medical professional that I encountered during the course of my pregnancy that ever dared to utter the words "Down syndrome."

I mean, really. I was 30 years old and healthy and we had no such thing in our family history so why should they have?[/dripping sarcasm]

But. I had a very good friend who was also pregnant at the time. About a month ahead of me. And when she had her ultrasound, her world stopped for about an hour because her baby also had an echogenic focus and, unlike with me, her peeps made quite the big deal about the EIF being a soft marker for Ds.

I say all this because when the Cardiologist reviewed Playette's teeny heart in the womb (the EIF was no longer present, though she does currently have a small ASD) and I asked if there was any chance that my baby would have Ds, I was quickly poo-poo'd as he told me something along the lines of, "Look at this baby. There is no reason at all for anyone to suspect Downs. There are no obvious features here."



Which is funny now (though I can't help but think how irresponsible that was of him) because check out her tongue in the second photo.

To this day, Playette presents with an open mouth posture and a protruding tongue (check out that hip lingo). For the first year of her life, it tore me up. People would mention it all. the. time.

And I would cry all. the. time.

Now though? Now, I realize that it's just a part of her and that she's in great company. One day she'll probably move past it as we continue to work with oral-motor tools and the rest of her teeth eventually come in. But maybe not.

This classic Rolling Stone's logo tee was a surprise gift from "Finn's Mom" Lisa. Some of us ladies were talking one day about the discomfort of having people look at your kid like something's wrong with them (pshaw!) and how awkward it can feel to have a l'il licker on your hands. It felt good to share and then be able to find the humor in the situation. These are our kids and we love them dearly. Thank you, Lisa, for helping us to feel empowered and for giving me another opportunity to show off yet another basket full of dirty clothes.



I am so thankful for my widened circle, full of people that either tell me about about their family members or send an encouraging email just because. I am grateful for other parents who share their stories and friends of friends that read here because they care enough about us to see how we're doing from time to time, even though they've never met us. I appreciate you all.

Rock on.

Silly Grown-Ups

Let me preface this story by saying that two of Playette's favorite things are dogs and babies.

She signs dog sometimes, along with the corresponding "duh! duh!", and I'll look around and sigh, "No, Boobalicious, I don't see any dogs," and then I do another visual sweep of the surrounding area and quickly backtrack and say, "Oops! There it is. You're right. There's a dog."

I've checked the direction of Playette's gaze and wayyyy over there on the corner, waiting to cross the street, is a dog. Or there was the time where she signed dog and said "duh! duh!" when we were at the ENT's office waiting for an appointment. Even though I figured that the nurse had no idea what the Littlest One was saying, I blushed and said, "No, no, she's not..." and then...wait...she has a dog on her shirt! Foiled again.

I really need to stop doubting this kid.

She spots babies with the exact same intent and preciseness.

So, yesterday, we were sitting at the dining room table with the Speech Therapist (ST). She was there to watch Playette eat breakfast and give us some feedback on the whole liquid thickening process before she takes off very soon for few months of maternity leave.

At one point, the topic of the baby's imminent arrival came up.

Playette was all, "Wait. Baby? Where?" and we pointed to ST's belly.

Since we obviously didn't understand what she was asking, she gave us her "what?" gesture, which is the universally-known shrug of the shoulders and hands out to the side.

That's when it hit me.

I'm about to start this whole "Where do babies come from?" thing with my two-year-old.

We assured her that the baby was indeed in ST's belly one more time and then had to laugh. Playette wasn't buying it and you could see it all over her face that she was losing confidence in the people that are supposed to be here to guide her.

You could almost hear her thinking:

"Babies come from strollers, not bellies."

I'm totally ok with that. For now.

RISE

Early this year, I read a book by Gene Stallings, famed former football coach of the University of Alabama.

It was through that book that I learned about the RISE program, started in 1974 to offer services like PT, OT, ST, and music therapy to young children with varying diagnoses or suspected disabilities.

I thought it was pretty cool and recall, at the time, wishing that we had a program like that for Playette to thrive in.

Fast forward to our last IFSP meeting. There I was, shocked that so many people were in attendance at our little ole meeting about a not-even-two-year-old. The Service Blocker, her boss, the person in charge of local Special Education issues, the OT, PT, a random ST I'd never met before, the Psychologist and...wait. Who invited the daycare director and this other lady who looks vaguely familiar?

Oh, I was angry to say the least. Before it actually took place, I joked about needing the Staples Center to hold everyone, but I didn't realize then how right I was. It reminded me of our 30 guest wedding that somehow more than double in size. Neither was our choice.

Anyway, so there was one good thing that came of that meeting. As we went around the table for introductions, I was introduced to the vaguely familiar Ms. K. She was to be Playette's new teacher in the toddler room.

She told me then that she used to work at RISE in Alabama.

And I was thrilled.

Since then, Playette has, in fact, thrived in her new environment. Sure, I sometimes have thoughts of checking the IDs of some of the two-year-olds because they just tower over my baby, but it's working out great. She's holding her own.

And I just felt like sharing.

Book

Street Walker

Gotta love alternate Wednesdays. I swear, I do more on my "day off" than most other days, but eventually I get a break. Like now. So I'm blogging instead of any one of a million other things I could be doing. Trust me, I have lists.

This morning, after BD got Playette up and started for the day, we got ourselves all prettified and prepared for a session with the new ST via the school district. I fought this pairing for a while, eventually realizing that the actual lady wasn't as bad as my idea of what she would be like, so, yeah. I was wrong. She's pretty good. Imagine that.

She met with Playette at daycare last week and left me some very interesting notes. We then had a phone conversation, in which she came off very competent and patient. Today, though, was the first time that we were with Playette together.

It went well. Her style is much like our style when it comes to communication, which is great. Plus, it lines up well with the Communicating Partners model that I'm beginning to love so much. It's not all that different from the private ST except that it's not $115/hour out of our pockets, so, yeah, um, suffice it to say that we will be making some changes in that area very soon.

After ST, we went to the pool for Aqua Therapy, which was a lot of fun. I always enjoy that and as much as we can make therapy less like work, the happier I think all of us will be. As much as we like AT, and PT as well, we've cut back significantly lately. No one wins when the parents are burnt-out. No one.

So, back to ST. I showed her all of the many, many cups we've used over the last year or so. Here's a sample:


I swear, it feels like the pursuit for the perfect cup is neverending.**

Well, not quite, I guess. Because while I was showing the ST our cup collection, I remembered that there was one more. I really, really like this cup, but have no idea where we got it.


BD and I think it may have come from a Burger King kid's meal, purchased somewhere between here and Los Angeles, but really...huh?

Since Playette is still having trouble with creating a good seal when drinking and this all just kind of came together in my head this morning, I decided, after I dropped her off at daycare, that I'd try to find the thing.

[Insert wild goose chase here.]

Where we live, there's this one street that's lined with fast food places. If you want that kind of stuff, you go there. So, after I went to the BK by us and struck out, that's where I went. I started at Wendy's, crossed over to the KFC/Long John Silver combo, down and back across the big street to Wendy's, and then stopped at the Carl's Jr./Green Burrito combo joint on my way back.

I felt a little silly walking the streets, asking bewildered cashiers to see their kid's meal cups, but whatever. You do what you gotta do.

I smell like grease.

I didn't find the cup.

But you know what? I didn't give up. When I got home, I Googled it.

I saw one on eBay for $10.

Then it hit me. I learned from "Dragon Tales" the other day that you're supposed to look for clues like a detective, even if you don't have your kit because that serpent thingee stole it. Or something. (What, am I not supposed to listen while I'm doing Playette's hair? I'm totally in the running for Parent of the Year since I know what my kids is watching. Snerk.)

I went and dug the cup out of the dishwasher and saw that it had a phone number on the bottom. I called it. They transferred me to someone's voicemail. I left a message. Five minutes later I got a call back and the person on the other end offered to mail me some samples out of the kindness of their heart.

Wow.

I did it.

And it wasn't even on my to-do list.

Huzzah!




** If that clip doesn't do anything for you, I give up. I keep watching the first 10 seconds over and over and over again.

Spent

It's been one of those days.

Not enough sleep.

The headache won't stop.

I almost quit my job. (I know. Enough with the job issues already.)

The IFSP meeting. Ok, so that didn't go horrible or anything (amazing), but it's absolutely not something I felt like doing today. We signed it this time, but have to reconvene on the 15th to resolve some additional issues with ST services.

And then the guy I was planning to marry when I was 5 goes and dies. (Those links are to the posters I had on my wall and door as a kid.) I can't even watch the news because I can't believe it.

It's not so much that it's MJ. Well, that's part of it, true. It's more about not wanting to think about mortality and the memories I have of my childhood that are somehow connected.

I remember my mother taking me to see the Jacksons' Victory Tour at the Meadowlands. Floor seats, y'all. My mother was the kind of person who did this type of thing for a kid way before I could ever appreciate it. We bonded over that tour though. She had the Jackson 5, I had Michael. Sigh.

Anyway, I wasn't intending to dig that up in this post, but there ya go.

A few people have asked me today how our vacation was.

Did I fail to mention that?

Yeah, we were on vacation.

I tend not to annouce those things.

I can't wait to look back at the photos (hundreds of them, I'm telling you) so that I can remember what a great time we had before the flight cancellations took us so far off track that when we got home all we could think about was, "Well, that last part sucked."

Thank you all so much for the kind birthday wishes for the Littlest. She had a great time while we were gone and even got to add a new state to her list. (And one more for me, yay!)

I just realized that I, too, have become the the kind of person who does this type of thing for a kid way before she could ever appreciate it.

Heh.

Oh, well.

We're still holding fast to our "You must be able to walk 5 miles without whining before we take you with us to Disney" rule.

Flashback Friday: I think my belly's bigger than that now.

I thought of this picture yesterday while I was "running."

What reminded me of it was the fact that, as I was huffing and puffing and sweating, much of that attributed to how much weight I was trying to move, I realized that I'm just about the same weight now as when I was when I was about to give birth to Playette.

That is so unfair.




These were taken when I got home one night from a Tae Bo class at the gym. I had had a good night and wanted to memorialize it. I was right around 28 weeks and so excited that I finally had a cute little belly. I got sick not long after this and had to stop working out, but - man - I used to love that class and the friends I had in it. I really do miss it. Did I ever mention here that I used to teach those classes a lifetime ago?

*sigh*

Anyway. We used to call Playette "Teep" in those days. "Teep" started out as "Tadpole" and then evolved right along with her.

I'm surprised the child knows her real name with all these nicknames.

We're heading out to the movies tonight, something we haven't been able to do in a while since we've bee Ms. J-less. I really, really hope the movie is funny because I want to laugh sooo bad.

Playette will be at daycare tonight for Parents' Night Out, but she's got a fun-filled weekend planned. I'll tell you more about that later.

We're meeting a new respite worker on Monday and I really hope that works out. The new IFSP meeting was just scheduled for the end of the month and I'd hate for the Service Blockers to try to take that away since we haven't been using it.

By the way, so many people are now coming to this IFSP meeting of ours that we've had to move it to a non-traditional location.

All Cried Out

You happy now, Regional Center? Huh? Are you? You and your effin' certified letter?!

I'd like to think that they are treating me the way they are because they're not used to parents that fight for their children the way that we do.

I don't know any other way.

But damn if it doesn't suck and feel like your heart is being ripped out of your chest when things don't go the way you want them to.

I have no idea who is supposed to be on our side in all of this.

I know it's all about the money for the them and that sucks. So very bad.

Why My Daughter is Skinny and I Stress Eat

What a long-feeling week.

I'm still fighting the Regional Center on, well, everything really. They sent me on a wild goose chase for the following after I asked for help with PediaSure:

1. A denial letter from WIC. Ok, whatever. I could tell them that we didn't qualify, and they could easily look online and verify, but no. I needed to make an appointment, take off from work, and get a letter. - Done.

2. A prescription from the Ped saying that PediaSure was recommended. So I called and requested one. Which required me to play phone tag with the Ped for a while and then explain to her what I needed it for. Granted, it was nice to chat and go over the issue as a whole, but then I had to send BD over to the office, 30 minutes away, to pick it up in person. - Done.

Mission Accomplished.

I was pretty proud of myself too. I got it all done in record time.

Then, I spent the next few days attempting to get in touch with our Service Blocker Coordinator, who eventually tells me that I've "forgotten" something.

Yeah, whatever. That is so not the case. Unlike her, I write down important things that people tell me.

Back to the now-longer list.

3. Obtain a denial letter from our insurance company. Uh-oh. Now this one is tough. Apparently, they just don't give stuff like this out all willy-nilly. [deep breath] First, call the insurance company. They tell me that I need to request the Ped's office to request from them an authorization for PediaSure. Then, they will say no decide how to rule and send notice back to both me and the Ped's office within 14 days. Hm. So I did that last week and then, in the midst of typing this out, I call the Ped's office (again, some more) and see if they've heard anything. Amazingly, they have. Today. Not so amazingly, the answer is no. Yay? - Done.

I mean, I would have been happy with a "yes" of course, because that would mean that we'd be done, BUT I knew it wasn't covered and now this means that I remain at the mercy of the Regional Center and our PITA lovely Service Blocker Coordinator.

So, in the midst of all of this, I went to Social Services, remember? That was...fun.

The thing with MediCal is that if you qualify for it? You qualify for WIC.

And with WIC you get to drink all the PediSure you want.

Well, maybe not really. I'm sure there's a limit, but I couldn't pass up the opportunity to write that because for some reason, that would be really hard to explain here, it cracks me up and I need a laugh.

Anyway, so not only would we have the elusive MediCal that comes in handy when you really need something to come in handy, we'd have insta-access to PediaSure, which is how this whole most recent mess got started in the first place.

Win-win. Right?

Of course not.

Insert Service Blocker Coordinator.

Again, trying to get in touch with her is difficult, but I do realize that she is not my personal concierge so I cut her some slack. Nevermind that I'm still waiting, after 3 weeks, for a new IFSP meeting. Slack? Being cut.

Oh, so wait. I did accomplish something at Social Services on Wednesday. I turned in enough personal paperwork so that, in the wrong hands, we'd be financially ruined. When I called the Case Workerto inform her that the info had been submitted, she informed me that the only thing that remained was the letter of support from the Regional Center.

*sigh*

Back to the Service Blocker Coordinator. After a lot of blah blah blahing with other people in the office, I find out that she is there and get transferred to her, but only because no one else there has a clue about the Institutional Deeming waiver I'm seeking. Not that my Service Blocker Coordinator does either, but still. I'm her responsibility, for lack of a better term.

More blah blah blahing about how busy she is and how she went on vacation and...(I stopped listening. Don't worry, it wasn't relevant.).

Then she asked me about the IFSP meeting. Huh?

I reminded her that I was still waiting to hear back from her about that.

Totally different can of worms.

So then she tells me that her boss said that only permanent clients of the Regional Center can qualify for Institutional Deeming and permanency is determined at age 3.

I call BS. Immediately.

My child does not have a singular condition that is considered temporary in nature. She is not possibly going to "age out" of the Regional Center at/before age 3. This does not apply to us. Try harder.

Plus, I have this nifty guide on Institutional Deeming (from another Regional Center) that I found somewhere and thankfully held onto that reads:

The child must be an active client of the regional center. Although this status is generally determined for the child at age three, if his or her medical condition warrants, a child may be given active status prior to age three at the discretion of the [regional center] physician.

So there.

And this? Is why I want Reese's Peanut Butter Cup Cake for dinner.

Walking Backwards, Upside Down

That's how I've been feeling lately. Like, Silly Sally in Playette's favorite book of the moment.

I've been spending way too much time trying to put my goals for my daughter into items that are measurable and attainable, realistic and specific. I have the sick feeling that by the time we're done with this IFSP, it will be time for the mid-year review.

The good news is that I finally submitted my input today. I'm so glad that's no longer hanging over my head. It feels kinda like finishing finals. While knowing that you only get a short break before the madness starts all over again, it doesn't keep you from appreciating being done.

Living in my IFSP-consumed world, I didn't post about when I took Playette to a local "Mommy and Me" type class. At least that's what I think those are called. I've mentioned it before, about how I've been trying to get back so that I could spend so quality time with the Littlest, singing goofy songs and seeing her interact with her peers.

Well, it was great. I wasn't sure if I'd still feel that way after a year of not going. Also, this was a new group of folks. I'd have to explain things. I was honestly scared when the first little boy I was introduced to was Playette's exact age. He was like 6'2, 220 lbs. I mean, this kid was huge compared to my little munchkin.

But I took it all in stride. I really was o-k. And that felt good.

The instructor, who also happens to be the lady we work with in the Parents as Teachers program, reassured me that not everyone is what they seem. Some people are facing issues that don't happen to be written on their faces. And, of course, she was right. It wasn't long after that conversation that I met a woman with twin girls, one of whom has B-W syndrome. The girls were born premature and they were not yet walking at a few months younger than Playette. I could see that mom was checking Playette out, so I quickly let her know that my girl is 22 months and has been walking just 6-8 weeks. We've since talked on the phone and have had the opportunity to exchange diagnosis info. Cause that's how we roll.

I went to WIC last Friday and got some tips for pumping the calories into Playette, in addition to a denial letter for services. This is a good thing since the Regional Center requested this - and a prescription from the Ped - in order to provide us some assistance with buying PediaSure. The lady there also connected me with someone who works with Medi-Cal, so in a few minutes, I'll leave here and go chat with that lady about what needs to be done for Playette to qualify. From what I've been told, we first have to be denied (I'm sensing a bureaucratic trend here) and then can counter that Playette, on her own, qualifies for a waiver under Institutional Deeming. I don't even really remember what that means anymore. It's in my head that they'll use that justification to say that the state is actually saving money on her because we kept her home and not in an institution. If I'm wrong about that, please correct me. I'm tired.

So, while I hope we never need Medi-Cal, I'd like to have it in place for the just-in-case factor of it all. It would feel good to scratch something off my list.

I'll come back either later this evening or tomorrow morning and give you the answer to Ye Olde Dishwasher Dilemma. If anyone wants to change their answer, go ahead. I'll take the most recent comment as your final answer. Plus, the more details, the better. If you can figure it out, you deserve coffee on me.

BTW, I went into Starbucks today to get the gift card. While I was there, I got sucked in and ordered a tall, non-fat Caramel Macchiato. I was so proud of myself for using the lingo. Until I realized that what I really wanted was a Frappucino.

I hereby request that they change the names to "hot coffee" and "that slurpee coffee."

Those names I can handle.

Catching Up

I have a bet going with BD that I can get this post done in 30 minutes. I'll do my best.

Ever since Tricia posted about a great deal on diapers, I've been following Never Pay Retain Again. I've been slacking on my bargain hunting lately, so I got really excited when I saw a post about a promotion at Safeway on Friday. I ended up going twice. The second time was at midnight and I walked away with the following stash for $7.77 and $12 towards my next shopping trip. So I actually made money. Woohoo! I love stuff like that.


Since I spent the wee hours in the grocery store and was so amped I couldn't sleep and then passed out on the couch, I woke up tired on Saturday morning. Which was not ideal since we had a full day planned.

First, I went to kickboxing. Go me. I'm still struggling after skipping the past month.

Then, I took Playette to a Month of the Military Child celebration. There were bounce houses, face painting, bubbles, balloons, and a band. Playette was digging the music. Those girls were impressive (and cute!).

The idea was that I would take her for an hour, come home for her nap, and then head to the evaluation.

That never happened.

Shoot, we spent at least 30 minutes just eating pizza!

It was very worthwhile for other reasons though. There were representatives there from all kinds of organizations that support children so I had the opportunity to speak with someone from Easter Seals as well as a nutritionist from WIC who gave me some tips that may help in increasing Playette's weight which has been plateaued for the last 6+ months (ugh).

Amazingly, with only the car ride time to sleep, Playette did quite well during the eval. I was prepared for a meltdown.

We got started a little late and I was totally on the defensive, but eventually the walls came down and I even apologized to everyone I was throwing shade to since I walked in the door at the end.

The best thing was that I got to speak at length with the center director. She knows Playette since we go there for ST, but since she doesn't work with her regularly, I was able to get a fresh point of view that I could appreciate since she wasn't a stranger and I didn't have to start our story from scratch. The best news is that apparently our Regional Center has just entered a contract with this place and we're now going to work on seeing if Playette can participate in their program on a more regular basis. We could never afford it on our own. We're talking 3 hours/day, 5 days/week for $1500/month.

I almost fell out my chair just typing that.

Add in the fact that we'd still have to take her to daycare and pay for that in full since 3 hours a day just isn't going to cut it with our schedules.

But I like what they're doing there, so I've got my fingers crossed that we can at least get her in for a couple of days a month.

Today, we got up and went to Parents as Teachers, which was great as usual. Playette was all over the room and into everything. She loves it and I'm glad that I have the opportunity to take her to a class with other parents and kids this coming Wednesday.

I'm so, so tired thogh...and tomorrow's the first day that I have to be at work 30 minutes earlier than I have been (doing this will allow me to have every other Wednesday off).

I don't feel like I'm doing what happened this weekend any justice right now so I'll try to elaborate a little more in my next post.

It's all basically related to the IFSP meeting from last week. I need to write a proposal, requesting the types of services that we want to have in place for Playette. I don't want more of the same because I feel like it's pointless, among other things.

That meeting was just a colossal waste of time and instead of sitting in a room and being read to (again) by a group of people that are so being the times it's not even funny and being told what our child can't do even when she really can? Eh. Enough of that. Consider it a lesson learned.

We all know that we're the best advocates for our kids, whatever their needs may be, but sometimes it takes it being put in your face for you to realize that no matter how tired, deflated, emotional, or inexperienced you are, there comes a time when you have to step up and make your presence known. I thought I was doing an ok job up until now. Walking into an IFSP meeting with this particular group of folks and assuming that all is going to go well if we allow them to take the lead simply cannot happen. And it won't. Ever again. This is one area where I can't let laziness take over.

Ok, so that took me 59 minutes. Bah!

I have no idea how that happened.

Sleepy time.