goodfountain

We are counting down to vacation!

In just 3 short days we will embark on an 11ish-hour journey to a quiet island off the South Carolina coast. It’s our First Big Family Vacation. Last year we went to Texas for a few days to visit my husband’s brother and family, but we stayed at their house (although with their pool and golf course, it was kind of like being at a resort…).

Chee is beyond excited about her first trip to the beach. She has cried a few times over the last couple of weeks because she wants to go to Sow Key-row-lina Right Now. Everything Chee knows about the beach she learned from Caillou. Therefore, she wants to fly a kite. That is her main interest in the beach. Caillou flew a kite on the beach, therefore Chee is going to fly a kite. Must remember to pack the kite.

I’m excited because I will have adults around me. The whole time. Not just the short people. My husband reminds me that this is HIS vacation, too, and not a dump-the-kids-on-Daddy break for Mommy. What?! So just having help makes it a vacation for me? Woe is me.

Grandma and Grandpa will be there, too. They are willing to let the kids be dumped on them babysit so we can go out. Got to love the Grandparents. Oh, how lovely do I sound? Excited about my vacation because I will get a couple of breaks from my kids. At least I’m keeping it real here in bloggy land.

I admit I’m super excited about playing on the beach with them. Chee has been practicing building sand castles in our sandbox at home. This is accomplished by dumping water in said sandbox, therefore making it a mud box. Now if we could just get Ess to stop eating the sand…

Ess is excited about vacation because everyone else is excited. Mostly she is talking about getting to see Aunt K and Cousin M. They will be joining us too. I tell Ess that we’ll be going to South Carolina on Saturday and she says, That’s a good ideeeeaaa, Mommy.

Yes it is.

I am not anticipating any major Sensory challenges for Chee. There’s a pool where we’re staying so we’ll probably swim in the afternoons after spending the morning at the beach. A daily pool swim should take care of all her sensory needs. She’ll have Cousin M to play with and, as I’ve shared before, they get along very well and make good playmates. M is a good role model for Chee in terms of language.

When I come back I hope to have much good stuff to share! Stay tuned.

I’m rather enjoying this particular developmental spot that both my girls are in. Chee has recently had what one could call a conversation boom in her language. She’s very engaged with us, very communicative. But especially so with her sister. Ess is already quite the conversationalist. However, it’s a bit of an emerging skill with the both of them. Makes for some hilarious, if not repetitive, discussions.

Chee’s birthday is Sunday. She’s very excited. She invites nearly everyone she meets to her party, which is Saturday. She also asks them how old are you going to be on your next birthday? Most are caught off guard, but they usually answer. I know it’s not a polite question, but we’ll deal with that later. I’m just happy she’s talking to people!

Tonight we went to a party supply store to pick up a few more things for the main event. On the list was Party Hats. Chee is requesting that everybody wear hats at her party. We’ve invited six little friends over. Our first not-just-family party.

On the way there, our girls chatted.

Ess: I wan nuss, I wan nuss. (Code for I want to nurse.)
Chee: Nooooo, you can’t nurse, we’re going to Party City! Yay Party City!!

Ess: I wan go swimming!
Chee: Nooo, you can’t go swimming, we’re going to Party City! Yay Party City!!

Ess: I wan Mommy, I wan Mommy!!
Chee: No, you can’t ha… (pause) You can have Mommy, Chee (pause) I will go with Daddy!

While it’s not the most high level and robust of conversations, it was definitely back and forth. And back and forth. Chee is very good at answering most all of Ess’ questions. Which are many. What doing, Chee? Where Daddy, Chee? What doing, Chee? (What doing is the question of the week.)

I used to be afraid that Ess would surpass Chee in language development. Instead what I think she’s doing is speeding her along. She’s a good role model, believe it or not, even at 19 months. And while Ess, as the younger sibling, is constantly worried she’s going to miss out on some thing of grand importance, it is actually Chee who is doing as much, if not more, of the imitating between the two.

It seems we have been blessed with the perfect little sister for Chee.

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Epilogue to the short story

Our protagonist is using the potty at home, of her own volition, about half the time. Her Mommy has no idea why. Perhaps it is the Mommy’s strategy of just ignoring the pottying. A strategy born from a desire to withhold strong, strong feelings of rage that threatened to consume the Mommy’s entire being. Whatever the reason, the little girl seems to be tiring of peeing on the carpet because nobody seems to care anymore. And there’s a note on the fridge that says Mommy will buy more Popsicles when the little girl starts using the potty again. She reads that every day. And everyday Mommy says, Maybe today will be the day that we can buy those Popsicles.

So far, they’re still waiting.

But every day they seem to be a little closer.

Maybe tomorrow.

Tonight is a night I wish I had taken my camera along with me. How I would love to have captured the look of sheer joy on both my daughters’ faces.

What were they doing? Riding their “bikes.” I have to quote bikes because neither child was actually on a bike. Chee is riding a big wheel that we bought Ess last week that she is too little for. Chee stole it. Immediately. Behind our back she put the Barbie stickers all over it (in no orderly fashion mind you) that we were going to leave off (does everything have to be branded?).

As with most of her other gross motor skills, Chee came late to the party with pedaling. Add that to the fact that she is terrified extremely uncomfortable playing in our cul-de-sac (read: very quiet, very safe), there isn’t a lot of riding happening in our little corner. And don’t forget that in order to get to the street you have to be near the driveway, which is near the evil evil garage, and well, again, no riding ’round here.

Last week we became determined that it was time to get out there and get pedaling. Pedaling is good heavy work and would be an welcome addition to our revolving Sensory Diet. And, hey, it’s fun too. So my husband bought a too-big big wheel for Ess and was going to have Chee ride her Radio Flyer Tricycle. All for naught because Chee flat-out refuses to play in the front of the house.

No, how about we ride in the backyard? I’ll just ride my bike in the back.

Our deck and patio just don’t work for any kind of riding. Then we remembered the walking path around the lake at the County Park a short five-minute drive away. We walk the path often and usually see families pedaling around the lake on their bikes as well.

Chee took the big wheel and Ess had a Winnie the Pooh ride-on toy (no pedals, she just used her feet).

And they had a blast. About 2 minutes onto the path and we began a slight descent. Ess kicked up her feet and just let herself ride down the hill as fast as Pooh and friends would take her, a smile plastered wide across her face.

Chee, after discovering the magic of steering to prevent falling, took off, pedaling her legs so fast I had to jog to keep up with her. She loved every minute of it. And she crashed good and hard at bedtime.

There is something magical seeing children blissfully happy, experiencing something brand new. Today was a good day being a Mom.

We spent the last two weeks entertaining family, not every day, but most days. A slight detour in the plans and some of the extended family was unable to visit (my grandmother fractured her hip but she’s doing quite well all things considered).

During this time I learned a few things about Chee that I hadn’t quite zeroed in on before. One of those is that Chee knows herself. Knows herself well. Having a same-age cousin visiting created far more opportunity for social interaction than is typical. I would observe Chee play with her cousin for awhile and then go to another room and play by herself. All of M’s best efforts could not persuade Chee to come back till she was ready. Till she’d had time to re-energize. Alone. Often she’d pull me in to their game and want me to play with them. Very often she’d engage me after a time of engaging with M.

One morning a storm canceled our plans to go to the pool, so we opted for an indoor play center. There was another group of kids already there when we arrived. Ess had fallen asleep on the ride over so she was sleeping in my arms in the (quiet) lobby while Chee and M were to go in the main playroom. Chee repeatedly came out to sit by me. And when she did go in the room, she sat right by her aunt and played just by herself. At first this surprised me. Chee is very familiar with this place as she took an art class for sensory kids here. And typically she loves it and asks often to go. I kept telling her, Go inside and play with M. Repeatedly I ushered her back in, only to have her come back out a few minutes later.

When the other group of kids left, she bounced in and was all over the place. Jumping in the ball pit, sliding down the slide, cooking in the ‘kitchen.’ She was herself again. The Chee I’m used to seeing at this place.

I found myself, over the last couple of weeks, telling her to go play with M, go see what M is doing, ask M if she wants to do this or that.

And what Chee was telling me, with her actions rather than her words, was I need time to myself. I need smaller groups. I need my Mom nearby.

With extra family around, and me wanting so hard for Chee to be more social, to show how far she’s come, I pushed her further than she was ready. But the good thing is, she let me know. She knew what she needed, and she went for it. I need space and I need security. Don’t push me before I’m ready.

Which brings me to Dramakinetics. The first week did not go well, the 2nd week went slightly better. It was okay when it didn’t go well when I could solely focus on Chee, but when I have Ess to take care of, it was harder. Much harder. Chee’s crying leads to Ess crying which leads to Chee crying harder (which leads to a nice headache for me). Chee did participate in the last 15-20 minutes, which was an improvement over the previous week, but it took a lot of effort to get there. Was it worth it? I don’t know. I do know I hate quitting things, but I also hate all of us being miserable and starting our week out on such a negative note.

And I have to ask myself, is Chee ready for this? I’m all for pushing her through challenges and helping her overcome her anxiety. But I also need to listen to Chee. She worked through her discomfort with the Tumbling class - marching in there the 2nd week raring to go. Perhaps that’s enough for right now.

Times like this, when I’m so uncertain what is the right thing to do, I need to quiet myself and listen to Chee. She has proven that she knows what she needs.

The brilliant blogger/speech therapist/mom (more I’m sure) Jordan commented on my post yesterday About Autism saying the following (among other things):

I do believe that for some kids, the sensory processing piece is the pivotal issue, and once they get enough help with that, a lot of other pieces fall into place (such as language and a readiness for more age-appropriate learning).

I hope I’m not overstepping, Jordan, by calling out a portion of what you said, but it rang ever so true with me, and also reminded me that I want to pull out my spreadsheets share some of my observations on Chee and her New and Improved Sensory Diet.

You may recall that I had said what a terrific day we had after a morning spent swimming. I have heard (and it has been confirmed several times over) that swimming is terrific sensory input, particularly proprioceptive (heavy work). I have in the past observed that when I routinely engage Chee in some heavy work, she seems to have better concentration and we will see an increase in her spontaneous and conversational language. It’s quite remarkable to tell the truth. Since she’s been in preschool and getting a pretty good Sensory Diet there and at her weekly OT session, I haven’t been diligent in our diet at home. Not to mention that I think the Sensory Diet we had been doing at home has run its course.

I won’t go into the daily minutiae specifics because, let’s face it, it’s not that interesting to anyone but me. And maybe Chee’s occupational therapist.

But I will share the highlights - the New & Improved Sensory Diet is working! Wonderfully!

Swimming is very effective. On days we “swam” (i.e. army crawled back and forth a lot across the pool), she was very well-regulated. Unless it was the weekend. But I think that had more to do with the separation anxiety that I recently talked about. In fact, it was because of our experience at the pool last Sunday that I came to the conclusion that it is indeed separation anxiety, and not Sensory Dysregulation.

The army crawls aren’t the only thing that is effective in the water. So is crashing. Chee came up with that herself. I think her body/nervous system (whatever) knows what it needs. She spent the entire hour and half we were at the pool throwing herself down. A modified Nestea plunge, if you will. (I figured out later that she was falling down like Rachel does at the end of the Silly Pizza Song - if you are a Signing Time fan, you’ll know what I’m talking about.)

As it’s not realistic to go to the pool every day, I had to come up with something new at home. Thus, the Obstacle Horse was born. For some it’s a course, but Chee calls it a horse. And as it’s sooo darn cute, I refuse to correct her.

What seems to be the significant part of the Obstacle Horse is crashing onto cushions. Chee loves it.

We have done three, maybe four, different Obstacle Courses this past week. Always, I’ve included Cushion Crashing. It’s a huge hit. As is jumping into and out of the Hula Hoop, balancing on her belly (on an exercise ball) while digging puzzle pieces out of a bucket of rice (need a less messy version of that), crawling through a tunnel, walking across her homemade balance beam (her balance is so much better than it used to be), stepping (alternating feet) through the homemade “ladder” on the floor, and trampoline jumping. (Not all of these in ONE Course, mind you.)

We’re usually doing the Obstacle Course both in the morning and in the afternoon, but I’m leaving the couch cushions on the floor for her to crash as much she wants (which is often).

However, so as not to burn out on the Obstacle Course, occasionally I’m throwing in a splash of Yoga Kids (she loves this video) and games of Simon Says, where we do lots of things like bear crawls and caterpillar crawls and other Yoga poses from the video.

Results we’ve seen include significantly improved language - spontaneous and conversational - and a much calmer Chee during what is normally the “witching hour” (around dinner time). Also, there is less crying and tantruming when Ess starts acting Ess-like (what you would expect from an 18 month old). More than anything, though, it’s the increased language. The clear sharing of thoughts and feelings. That is Chee’s most significant delay area, so I’m thrilled to see progress there.

I can’t think of any other thing that I can attribute the difference I’ve seen in her this last week. And it kind of confirms my suspicion that Sensory Processing is her biggest ‘issue’ and should remain a priority.

A consistent Sensory Diet has helped her manage a busy week of a cousin visiting, dinner out at crowded, loud restaurant, some unexpected changes in weekend plans. And she’s just plain fun to be around too. I imagine she just feels better too when she doesn’t have to expend so much energy trying to regulate herself.

And you know, I haven’t seen a lot of doinking lately. That makes this Sensory Diet worth its weight in gold.

This past week, I took Ess in to the pediatrician for her 18 month well-baby checkup. We were presented with a new form that I’m sure many of us have heard of - The M-CHAT (Modified Checklist for Autism in Toddlers). This is a diagnostic tool that the AAP is now recommending at the 18-month and 2-year well baby visits. It’s an early screening tool for Autism Spectrum Disorder.

As I was filling it out for Ess, I couldn’t help but think back on how I would have answered those same questions very differently for Chee. So differently, I’m sure, that our pediatrician would have taken one look at it and said, Get thee to a specialist, your daughter may have Autism. I’m convinced, too, that we would have received a diagnosis of PDD-NOS for Chee.

Occasionally I wonder how might things be different for us had Chee received an early ASD diagnosis. She would have started Speech Therapy, perhaps, earlier than age 2 1/2. Then again, had I gone through the Renowned Autism Specialists group at our Children’s Hospital, it would have taken at least a year to get through all the evaluations and appointments and, odds are, therapy wouldn’t have actually started any sooner than it did.

I know the conventional wisdom about Autism is that it’s a lifelong condition, one can’t be cured from and one doesn’t recover from Autism.

But were Chee to be evaluated today by a Specialist it is unlikely she would be diagnosed with ASD. Indeed she was evaluated (but not thoroughly) by a Developmental Pediatrician who said she is positively not on the Spectrum. That’s not to say that she doesn’t have special needs. She still has Sensory Processing Disorder, and she still has a Language Disorder, or perhaps just Unusual Language Development. I don’t know what the right set of words is.

A lot of folks say that kids don’t recover from Autism. But what if some kids do? What if there’s such a thing as a Developmental Autism (Chee’s speech therapist first tossed that phrase out to me)? If no two kids look the same on the Spectrum, can the same not be said for Development within, an off of, the Spectrum?

Maybe Chee wasn’t cured (cure was never a word in my vocabulary), but perhaps she was educated out of it. Or perhaps she never truly exhibited those traits (although I don’t think my memory is failing me - there were many autistic traits). Or, perhaps, as the name implies, she has Pervasive Developmental DELAYS. Delays - meaning happening later. Perhaps she just developed out of the early symptoms.

Whatever it is (and really does it even matter), I think I’m just reacting to a couple of different things. One, reading that M-CHAT and seeing how many questions I would have answered for Chee in the negative (or positive depending on the wording); and two, reading repeatedly on blogs and in the media about how Autism is a lifelong condition that one does not outgrow.

That too blanket of a statement for me, and I’m never comfortable speaking in the absolutes about child development -whether it’s about Autism or anything else.

Chee has never been one to talk about her feelings. When she’s upset, she cries or whines or, unfortunately, throws herself on the ground and kicks and flails. As with most Hyperlexics and other children on the Spectrum, her language has been slower to come. We’ve often wondered what’s actually going on inside that head when she’s crying, and have yearned for when she can express her feelings, be it sadness, frustration or anger.

It’s starting to happen. Chee’s big into telling us that she’s crying, that she already cried, or that she’s going to cry. At first that was as far as she would go. She’d just say, I’m crying. We prompted her with Why questions and gave her various choices of why she might be crying. Are you sad? Are you angry? Do you miss Mommy? Are you upset that Ess took your [coveted object of the moment]?

Because she’s still somewhat echolalic, and has an incredible memory, we are careful when giving her choices. Careful not to be too repetitive with them, and careful not to be too specific. We change up the choices often as we don’t want her just to tell us the reason she’s crying is one of the choices we’ve given her one too many times. And we’re being very descriptive of our own feelings on a frequent basis. I’ll say, I feel sad that [cousin] M went back to Grandma’s today. I’m going to miss her. And of course, I’ll pair that up with my saddest face. I also tell her when I feel frustrated and angry. Happy and content. I’m not looking for a response, just modeling how to recognize and communicate feelings.

I think that’s starting to pay off. Chee is now using the word because. I think it was just last week that I heard her use the word because for the first time (appropriately in context).

She will make a sad face, and not even cry, just a sad face, and say, Mommy, I’m crying. When asked, or sometimes right away, she’ll tell me she’s crying (for example) because Daddy’s at work. Usually she’ll say she’s sad or upset. We’re still working on communicating the Whys.

However, I’m noticing that often times she will tell me she cried at some place and she’s referring to a previous experience. She told us a few days ago that she cried at the birthday party.

Why did you cry? I ask.

Because of Bob, she tells us. And then she goes on to tell us, with a little prompting and choices, that Bob yelled at her and scratched her face. So those scratches were from Bob! Fortunately we’ve heard no other stories about Bob and Chee at school, so I’m left to think it was a one-time thing that happened.

The other day driving by Lowe’s Chee said, I cried at Lowe’s.

Why did you cry?

Because Daddy and Ess were gone.

What she’s remembering is a few weeks ago when the four of us went to Lowe’s and Chee said in the van on the way there that she had to use the potty. So we parked and she and I got out and hurried on ahead to get to the bathroom. Her Daddy was left to get Ess out of the van (which always means putting her shoes back on). When she saw that Daddy and Ess were not with us, she completely fell apart. Dropped to the ground kicking and screaming. Looked like a temper tantrum, but I don’t think it was.

I think it’s separation anxiety. Chee never went through typical age-appropriate separation anxiety. Honestly, it seemed she couldn’t care less if we came and went. Over the last year, as she’s become more attuned to our comings and goings, she has started to get upset about it.

It seems to be the worst when we’re out together, the four of us, and we decide to separate (as at Lowe’s). To her, suddenly Daddy and Ess were gone. Because she was pretty dramatic in announcing her need to use the potty, we assumed it was urgent business. So, without much explanation, I hustled us off toward the store. Halfway toward the door, she turns around and does not see Daddy and Ess and bam! Separation anxiety. Meltdown in the parking lot. Nearly inconsolable.

It feels like this is a typical-but-delayed developmental stage. All kids go through separation anxiety. Chee has been delayed in everything else, it stands to reason that she is delayed in her emotional development as well.

However, when you add in a difficulty in expressing feelings, in communicating in general, the result is a disproportionate-looking severe temper tantrum.

Now that she has told me she cried because Daddy and Ess were gone, we’ve begun talking about feeling scared. I’m crossing my fingers that as her language continues to develop, as she continues to develop emotionally, this separation anxiety will be more of a blip in our schedule than a mega disruption to an afternoon outing.

Chee started both of her summer classes this week. Monday we had Dramakinetics and today was Tumbling. They both started off the same, but ended quite differently.

At Dramakinetics, she would not go in the classroom. She was able to brace herself while grabbing the door frame and unless I wanted to be really physical with her, I couldn’t get us through the door. I try to avoid being overly physical with her. It’s never met with any measure of success.

We spent the whole hour in the hallway, watching the class through the windows. We discussed the kids in the room - how many boys, how many girls, the colors of their shirts, the teacher. She told me she didn’t want to go in because she didn’t like the kids. I asked if there there were too many kids. She said, No, there’s four.

Toward the end she started peeking in and just as the teacher said it was time to sing the good-bye song, in she went. And said good-bye to everybody. Even hugged the teacher.

I’m willing to bet with a high degree of confidence that she’ll march in the room next week like she’s an old pro. I’m finally seeing that pattern emerge. That the first time she does something she is reluctant and afraid, but the 2nd time, she’s all about it. As if the fears never happened.

Today’s tumbling class started out similarly. She was supposed to go sit on the blanket with the other 3 yr olds. She stood next to the blanket. I stopped to tell one of the teachers that she has Sensory Processing Disorder and will likely be a bit overwhelmed by the group at first. At that point, while I’m holding Ess as we’re getting ready to go Parent/Child tumbling class, Chee has her hands around my neck and is trying to climb on me. She’s not crying (yet) but she’s got the sad, downturned lips. Tears are coming.

This teacher, God bless her, said she has seen this many times, and is very reassuring. She offered me the choice of going into class with Chee or just letting her (teacher) take Chee and although she’ll cry for a few minutes, she’ll likely get over it. She said she’s done it many times and is more than comfortable just picking her up.

What the hell, I thought. Let’s try something new.

I told Chee she was going to go with Miss Ethnic-name-I-can’t-quite-recall while I went to Ess’ tumbling class. The teacher scooped her up and I walked off to Ess’ class. By the time I got there and looked back at Chee, she was happily bouncing on the trampoline.

And that was that.

Afterwards I was told she did fine, no tears, and had fun. Chee told me all the things she did in class, including, I cried.

There’s a time and a place for both approaches, I think. At tumbling it was easy to let her go off with someone, even though upset, because I knew she was going to dive right into some fun sensory experiences like jumping, rock climbing, sliding and crashing!

At Dramakinetics, it was all about movement and music and there was time spent sitting in a circle. Music can be very emotional for Chee. She needs time to process and acclimate. In general Dramakinetics is going to be more challenging for her, but the right kind of challenging.

As an aside, I have my hands full with Ess. She was a riot during her tumbling class. Her first ever ‘formal’ class. Determined to climb UP the slide (something I’ve never seen her try at home or any other playground), she was chock full of stubbornness at being redirected away from it again and again. I have never seen her so relentless before. And just when she finally was okay with trying some of the other equipment, it was time to move to the area next door to do something new.

This she was not okay with. She kept running up to the gate shouting , “Open gate! Open gate!”

Neither was she okay with the bubble machine at the end. Bubbles are great, Ess loves bubbles. But she was, truly, devastated that she herself was not blowing the bubbles. She took one look at the little machine spewing forth all those bubbles, crossed her arms, fell to the ground, and cried, I wan buuuubbbbbblessssss.

Oy, these girls keep me hopping.

I’m a bit wary of the next two weeks. There are many happenings.

We have family visiting for two weeks. My sister and her niece, M, who is four. They will be staying with us part of the time and with my Mom part of the time.

We will have other family visiting during that time, including a 2nd cousin who is 5. They will be staying with us.

M loves Chee. And Chee loves M. M is good for Chee. She prods her into playing games and forces her to engage. I will have to pay attention the next few days to make sure Chee gets the space she needs. She loves to play with M, but she needs space now again. M, not so much. M is a social butterfly. A party girl at heart. And also the life of the party. Chee, not so much.

Although, I have to say, Chee held her own very well today at a (hot and crowded) butterfly show. And for two hours playing in the backyard. Lots of great language, playing, pretending, and she took breaks when she needed it. And it may have helped that I led us in a fabulous game of Simon Says, where Simon made everyone do lots of heavy work like bear walks and wheelbarrow walks.

After talking with Chee’s OT on Monday, I’m stepping up the proprioceptive input during the day and going to try for every 2 hours to get a little heavy work of some sort in. Chee’s new love of the game Simon Says helps this endeavor quite a bit. Monday she pushed the grocery cart, full of groceries and Ess, all around the store. Now that was seriously heavy work if ever there was any.

I truly love having M visit. I often wish she lived in town as she’s the perfect playmate for Chee. So while I’m a bit wary of how things will go, and I’m perhaps a little too conscientious that Chee doesn’t get overwhelmed by it all, I’m happy to have a safe playmate for Chee. A close-in-age cousin who loves Chee and wants to be her best friend. I have no real worries about them playing together, and I don’t feel like I need to monitor them.

These two cousins make great pals.