Apparently, my writing brain took a vacation. Countless times I sat down in front of this lovely laptop, staring at the keys. Nothing. Stared at the screen. Nothing. Flipped through pictures, looked out the window, thought about the days. Nothing. Oh, lots of things were happening, but they refused to iron themselves out into words. And sadly, typing random streams of letters with glee is really only acceptable if you are too young to read or write. So, I walked away. Again and again.
I'm still not sure that I'm up to the task, and I'm pretty sure that there's no way I can catch up on everything, so I'll just do my best to toss out some of the basics, and then (hopefully) go back to my usual blather as though nothing ever happened. Because, let's face it, for the last few weeks nothing HAS happened on here.
So. Brace yourself: this may be a bit long-winded.
Updates!
Service Dog:
Ellie was turned down for the service dog that we applied for in March due to Paulo's allergies. I'm not going to get into the details since it would appear to be a big miscommunication. With any luck he will get the thumbs up from the allergist in the next year or two and we'll try again. I must admit that the day the letter came I cried, shook, and basically needed to be talked off the ledge, but I'm much better now. I think I'm getting better at this whole disappointment thing.
Getting Ready for Developmental Preschool: A Mixed Bag
It is now time to begin the process of transitioning Ellie. At age three, she "ages out" of Early Intervention, through which she currently receives speech therapy and ABA. At at point, the public school system becomes responsible for her therapy. So we began by having our first meeting with the coordinator and one of the teachers here at the house. They both seemed like very nice, very experienced people and I've heard only good things about the program here.
Then, earlier this week, I went to visit the school itself to see the classroom and iron out Ellie's IEP--that's an Individual Education Plan, for those of you outside the special needs loop. Lucky you.
Here's the thing: in spite of the fact that IEP's are supposed to design a program that is best-suited to meet the needs of each child, it's clear that in truth they are designed to help each individual child best fit the available program . If your three-year-old would be best-suited to a home-based program, well, you're out of luck. If your three-year-old has a hard time in closed-in spaces, staying with non-family members, or focusing amidst a lot of noise or distractions, you'd best be independently wealthy because your IEPis not going to service your child in the environment that suits them best. It will service them in a classroom with other kids and teachers. Period.
So, I went into the IEP meeting fighting back my fears about what this year will mean for Ellie, and hoping that she has some amazing, miraculous developmental leap between now and September and decides to love going to school. I was praying that going to 'school' won't trigger all the anxiety and panic that we've worked so hard to eliminate, because as far as I can see, it is our only option for her services--a realization that makes me equal parts hopeful and desperate.
After well over an hour with the woman who will be her primary teacher, I came away from the IEP meeting feeling really hopeful. Miss J-- seems to be all the things you'd want in a special needs teacher--experienced, caring, engaged, and willing to work with me as a parent. She listened, made adjustments to the plan as appropriate, and offered solutions to the issues I brought up in the meeting.
When we left the meeting room I was feeling positive and even optimistic. As we walked through the halls towards Ellie's future room, we passed walls brightly painted and decorated with children's artwork. We walked through a bookfairand past open doors leading into brightly lit classrooms with neatly stocked shelves of books and construction paper and crayons. And then we came to the preschool room.
She opened the door and my heart sank.
The room was felt small, and cluttered. A few children and their teachers sat staring at us from the table in the middle where they were eating--it was unclear whether it was lunch or snack time. One boy asked curiously where Miss J-- had been all this time, but the rest were quiet. The shades were drawn to keep the room cool as it was an exceptionally hot May day. It was working, but it seemed to intensify the closed-in feeling I got from the room.
Where I had imagined a bright room lined with activity stations carefully organized and visually clear (like the classroom at the Parent-2-Child program) there were instead a few child-sized cubicles with materials stacked, (?) piled (?) shelved (?) at the backs and, in some cases, on or next to the tables themselves. Where I had imagined a cozy respite area for a "break corner," there was a partially walled-off corner with one squishy foam chair and a few hard chairs, presumably for circle time. The coat cubbies protruded into the room next to us, and, like many of the flat surfaces visible, their tops were covered with random objects--juice pouches, notes, toys, bits of paper and assorted odds and ends. The play station featured a play kitchen and a table (I think) and was similarly cluttered. The much-anticipated touch-screen computer was crammed into the back side of the “independent work station,” which was one of the cubicle-type spaces with another pair of small, cluttered tables. In the open space on the work-alone side was a simple Velcro-strip schedule like the ones I’ve become familiar with in all of Ellie’s therapies.
The "gross motor room" that I'd heard so much about was not actually a room at all. I had pictured an open room with several play structures, but instead, it was roughly one-third of the adjoining classroom, divided on two sides by more cubicle-type dividers. The floor was the same tiles floor as any classroom without mats or padding of any kind. There was one small balance beam, and arched bridge, and a hanging cloth swing. Behind one divider were piled lots of other equipment which protruded around the edges and the top in a haphazard manner. More equipment was stored along the other end wall from floor to ceiling. I was told that there were a variety of swings that could be hung in the space, and that all the children took turns on the equipment every day. I'm glad that they have so much equipment and that they change it daily, but the visual effect was startling even to me. I knew looking at it that this was not the fun and exciting area I had imagined Ellie gravitating towards each morning. I’d be surprised if she so much as paused in this space on the way towards the door.
Behind the room-long divider in the same room were a series of office-type cubicles again. These were the spaces where kids went to meet one-on-one with speech and occupational therapists as often as indicated on their IEPs. The service sounds good, but the environment? It felt more like an office building in communist Russia than a learning room for special needs kids.
I came home and cried.
Paulo thinks I’m over-reacting, and maybe I am. Apparently kids come through this program and do well. Certainly, the teacher seems to be competent and dedicated—she must be doing something right. Probably a lot of things right. But I wanted to come home feeling positive and enthusiastic about the place where I would be leaving Ellie for the next two years, but instead I felt defeated and depressed. I wished like hell that there was a way for her to continue to get services at home, or at least in a cheerful environment. I am hoping that I feel differently after spending the morning there with her next month. Cross your fingers and say a prayer that she surprises me and loves the place, OK?
Ellie’s Gut:
But it's not all frustration and disappointment around here. In fact, we've made an unexpected break-through! A while back, I wrote about my frustrations dealing with Ellie's gut. Shortly after writing that post, I took Ellie off theMiralax completely. I determinedly packed each meal with every stool-softening remedy I could find--Fruit-Eze, fiber, magnesium, extra probiotics, aloe juice--if it was natural and poop-inducing I snuck it into her food.
She’s crafty. Sometimes she sniffed it out and it didn’t get into her. But it was hard to turn down doctored ice cream and pineapple juice, and flaxseed pancakes became a big hit with everyone, too.
Ellie started feeling better, napping better, and talking more. But after 8 days she still hadn't pooped. It was time for more drastic measures.
So one afternoon on the way home from Spencer’s preschool, with all the kids in the car, I stopped at the grocery store for glycerin suppositories. Let's be honest: no one likes the idea of suppositories. But after all that we've been through it just couldn't be worse. I wasn't risking a bowel impaction. And I wasn't going back to the Miralax.
She wasn't thrilled, but worked like a charm. I decided that one day probably wasn't enough. She had a weeks' worth of poo to flush out, so I decided to give her one each night. And that has made all the difference. Not only did it end the withholding, the diarrhea, and the diaper rash, but for the first time IN HER LIFE Ellie slept through the night. The bloating went away and her stomach returned to a normal size and shape. She wasn't thrilled with the process, but she wasn't distressed, either. And after a couple of weeks she began to get braver about trying new foods, too.
She doesn't sleep all night every night now, but since stopping the Miralax she typically sleeps a 4 to 6 hour stretch in the beginning of each night (as opposed to 1.5 to 2 hours) and then comes into my room to sleep instead of crying for me to go to her. And every once in a while she sleeps right through to 6 am.
It's a miracle I'd given up hoping to see.
Best of all, according to the GI (who we were finally able to see this month) we can continue to do this right straight through potty training without fear of dependency or side effects. I only wish we'd discovered this solution earlier!
Taekwondo
Lexi and Spencer had some great news too: they were named Students of the Month for the month of April at Taekwondo. They had their pictures taken with weapons (such fun) and I had to write a blurb about them to go on the poster that was hung in the Dojang. At the end of this month, we will get to bring the poster home. With a little luck, I’ll remember to take a picture to post here—they were SO proud! Now they are each well on their way to earning their next belts. I can’t believe how far they’ve come this year!
Preschool and Home School
In May, Spencer’s class held the traditional Ladybug Tea in honor of the mothers on Mothers’ Day. They began by serenading us with several songs in the chapel above the school, which was absolutely adorable. Even Spencer, who struggles to memorize lyrics on the best of days, did a great job of belting out song after song with all the movements. I’m beginning to think that little kids just sing better in motion!
After the songs the mothers were escorted downstairs to the gathering space where there were tables and chairs set out for tea. In each place was aplacemat decorated by the child, a potted pansy (in a plastic cup, naturally) and a card written and decorated by the child. Mine had a lovely drawing of me (I think I rather resembled a slightly disheveled cartoon M&M with a bouffant and a goatee, but you can judge for yourself) and a little essay:

Mommy
My mom has black, long, straight hair.
Her eyes are brown. She likes to wear a brown shirt.
My mom likes to sew everything with big holes in it.
She likes to play with me. She doesn’t like to do
chores for me so I can do it for me.
My favorite thing to do with her is hug.
I really like it when she hugs me. I like
when Mom cooks me an omelet for breakfast.
My mom can read in cursive.
We have moms to take care of us. (Great answer! He said)
I love you, Mom!
Spencer
Then all the moms had tea together, although I have to say that I would have preferred to have Spencer join me for tea. It’s not often that we get one-on-one time anymore.
In a couple of weeks’ time we were all back at his school for his graduation. It was a mercifully brief ceremony in the parking lot of the school under a vicious sun on an almost 90-degree day. Paulo’s parents, my mother, and Paulo’s godmother all attended, and afterward we feasted on Portuguese food courtesy of my mother-in-law. It was lovely.
Meanwhile, Lexi is still finishing up her school year here at home. She took her first-ever CAT tests this month and I am proud to say that she got all but one answer correct. This week I will send the results to the school superintendent, and although she will not yet be done with all her lessons, she will officially have passed the first grade in the eyes of the state. She’s reading at a third or fourth grade level and has had a great year in general, in spite of all the adjustments we have had to make along the way.
Personally, I am hoping that our more relaxed schedule will leave us extra time for all the field trips, art projects, and little experiments that got pre-emptedthis year by Ellie’s diagnosis and therapy sessions.
*****
There’s a lot more—the rest of Mother’s Day (my new ipod!), Dad’s birthday, Paulo’s afternoon at Fenway—but but in the interest of time, and because if you’ve read this far you deserve a little thank you, here’s a gem from Spencer from this week:
Spencer: There was a grackle on the feeder!
Lexi: That was a good sentence, Spencer! Mommy, did you hear that? Spencer made a really good sentence!
Me: Yes, you’re right, Lexi! That was a great sentence, Spencer! Good job!
Spencer (grinning proudly): I have my moments.
PS. Apologies about the formatting. I am way too lazy, unmotivated, busy, to do all that's necessary to fix its weird behaviors today!