Developmental vs. Chronological

We're in talks with our school district about Ellie's placement for next year. Because of how her birthday falls, she is eligible for another year of preschool; but she could also progress on to kindergarten.


We met with the district, county, and teachers [In Ohio, preschool services are provided by the county, so the teachers and evaluators are county employees. Services are provided in the school district, so they are also part of the process] a week or so ago and it's hard to separate the aggravation I personally feel towards [not the teacher...we love her!] some of them with the whole decision making process.

This is where the developmental vs. chronological debate comes in. Ellie isn't like her chronological peers. She's developmentally about three (she turned five in January) with more significant delays in speech. On the one hand, I don't know that she'd gain much more academically by going to preschool for another year. However, it would give her more time for verbal communication and for us to escalate signing for her expressive language. It would also give her more time to develop some OT skills (writing, drawing, etc.) and take more cognitive leaps towards kindergarten readiness.

The other side is that we should keep her with her chronological peers,which could mean kindergarten in the fall. She'd need lots of support, especially with communication [ongoing battle, her signing expressive language outstrips her verbal but can we get an interpreter in the room...nope] so I'd worry that the bar is to high and that it's too deep for her. On the other hand, she learns through mimicry so I think she'd really benefit from exposure to older kids and the academics.

On the selfish side, kindergarten would mean all day, every day and no daycare vs. four half-days with daycare.  The financial savings alone could be channeled into therapies to help with gaps. So while you all enjoy Ellie sleeping in the car during lunch...I'm working on talking to some other parents to get some input.

And I should note that I know there's more to the developmental vs. chronological debate (inclusion, separate, etc.) than what we're facing and I'm certainly one to support whichever a family chooses for them; which is why I'm talking to others so I'm better informed and can make the best choice for Ellie.

Reading

Tonight was much better than I thought it was going to be.  Tony was gone so it was just us girls with me only having about 5 hours sleep and there's an inverse relationship between amounts of sleep and shoutyness (Less sleep = more shouty) and it was a crazy day.

We were ok, though.  At one point, Meredith and Ellie were playing and running around with laughing and squealing that requires smiles and a lifting of spirits.  We studied for Meredith's science test and read Ellie's family book from preschool. (She was so excited to get to our family page...will have to share in another post). There was an inpromptu dance party that was funny (Ellie kept swinging as Meredith and I tried to dance in a circle).  There was Wii cycling and swordfighting.

The best, though,  was having the girls snuggle in after dinner to read a bit, do phonics/sounds. Meredith said she'd read and Ellie will do just about anything if Meredith is doing it so they tucked in and read Biscuit, which Ellie started liking this summer.  I really love seeing how sisterly they can be and really appreciated and needed this moment today.

Counting

So, we count with Ellie using sign language and we've varied it up. (I once had a colleague explain his theory that parents weren't teaching their kids to count because they usually said, "Now I'm going to count to three and then..."  I've always thought that was very funny but true).  We'd count to three or five when jumping into the pool this summer; and when she started scaring people (funniest thing ever...will have to get video for it)...we count to five, then spell or sign the name of the person we're scaring, then scare them!

While counting various things, we also read lots of books with counting and numbers.  The 10 Little Ladybug book was in heavy rotation for a while and it counts backwards from 10 and she'll read through it and sign/say the numbers and whatnot.  We also count how many bites she has to eat of something she's not particularly keen on. 

Anyway...point is...we count.  Numbers are fun!

The other day, I picked Ellie up from daycare and found her sitting in the little mud ditch outside.  Yay!  So bath time was moved up from after to dinner to when we walked in the door.  She doesn't love having her hair washed so I usually tell her how many pitchers/cups of water I'm going to pour.  Wednesday night, I said okay, four times and then poured a cup of water on her head.  Before I could say three, Ellie says/signs three, then we did two then one.  I don't know for sure that she was counting the pours backward, but on the other hand, I don't know that she wasn't accurately counting.  From her verbal and facial expression it seems like she knew she only had three more to endure. 

At first I was surprised and excited because I didn't expect her to do the backward count!  Yay Ellie!  But then, I find myself beating myself up because I should expect her to do it and shouldn't be surprised at how much she knows.  I think she knows lots and lots but because she doesn't have the verbal or sign language capacity, we don't know how much is locked in her beautiful head. She's a little sponge who is a keen observer and I usually feel like we could be doing so much more with her (more flash cards, more therapy, more, more, more!!!!!); and it become more and more obvious that there is (and has never been) any lack in her; that I am really the one that needs the work.

ButterflyHouse

It was a parent involvement day at preschool.  It was also one of the first outings that we had by ourselves that was for fun.  E. had a good time, I think. So did mommy.

Firsts

This past weekend we went to our first Buddy Walk. Just E & I walked as Big Daddy and M had a soccer game. They joined us later for the post walk entertainment (more on that in a minute). I haven't been very involved with the local Down Syndrome group and worry that I'm missing out on some valuable input or information. Or just finding a network of people. But then I go to a mom's night out and don't really care for the other women there and don't readily connect with some of them, so don't go back.

It's my own fault to some extent, but it also underscores the fact that just because we have children with the same condition, doesn't mean we're going to be besties. I'm not friends with mom's who have brown-eyed children either. Having a child with DS only gives us one thing in common. It may be a jumping off point, but so far, for me, it's been like the motorcyclists who wave at other motorcyclists as if to say, "I acknowledge you and approve your mode of transportation," but have no other interaction.

Anyway, so despite not being too involved in our local DS group, we wanted to go to the Buddy Walk this year because Rachel Coleman from Signing Time was the featured guest/performer. I mentioned previously that E signs. Most of her signing has come from watching Signing Time. That's her (left) watching Baby Signing Time at about 18 months. She's progressed through everything they've put out and we're eagerly awaiting new episodes. Given that Alex, Leah, Rachel & Hopkins have been in our house everyday for the last two years, we jumped at the chance to go meet them.

I worried that E would lose her mind seeing Rachel, but she didn't. I think it was because we see her everyday, why wouldn't she be somewhere. What really drew E's attention, though, was Hopkins. He was really fun.

During the performance, E turned away some of the time even though Rachel & Hopkins were singing some favorites that she's asks for - In a House is one E likes to sign before bed, Magic Words was the first song that I noticed E signing/singing along to in the car, Signing Time Theme Song she likes to sign along with Rachel...preferable looking in a mirror - anyway....E didn't lose her mind like I thought she would but it was fun nonetheless. The highlight was at the end when Rachel sang The Silly Pizza Song.

She asked what was first and I signed apple, then what was next (crackers), then she saw I was signing the list and asked what was next (ice cream), next (I said bread but it was wrong and quickly corrected to cereal), then next (bread), when Rachel said you should come up and sign...so E and I did! Big Daddy was there to video (below), so you'll see us doing so. Unfortunately, E didn't show all the signs she knows (she's really awesome at extra cheese) probably because of the speed (we do it slower at home by ourselves) and the distraction of Rachel & Hopkins, but it was fun. At the end, Rachel looked over to me and said, "You're very brave," and I said, "We live you," which is true. Signing Time music and videos are a constant part of our day. But my love letter to Signing Time must wait for another day. Until then, here we are at the 2011 Buddy Walk.

Silly Pizza Song w/Rachel Coleman (plus some)

First Day of School

The Update

So...still no ASL interpreter for E. We met Friday (8/26) with the District Director, Asst. Director, Principal, Teacher (we love her), the SLP (Speech Language Pathologists for those not in the know :-)). Of course they started out with...we think we're meeting her needs. To which I replied, if you don't have someone in the room who can interpret her and who can interpret classroom lessons into a language that E can use back, then no you're not. After much back and forth in which the Teacher and SLP admitted that they don't sign 100% of the time, do not know her vocabulary (despite us giving them a list last year that they haven't mastered), that she only really signs to them and doesn't verbalize....the district offered to have the situation evaluated. I asked for what and they made noises like they really want to make sure that the teachers really aren't meeting E.'s needs, but what they really want to know is whether E really signs.

There were many fun moments (like when Big Daddy had the Director so wound up (which is very unlike him...go Tiger Dad!) she looked to the Asst. Dir and asked her to explain what the Director clearly didn't want to answer), but my favorite was when I took the pre-written letter out of my file, signed it and passed it over saying, okay, we're done here, we'll let you know about any evaluation, but in the meanwhile..you've our permission to speak with Xattorney at the Ohio Legal Rights Service (OLRS). That was a nice moment. Then we signed our agreement to the OT/PT goals (we had them reviewed by our private therapists) and clearly wrote our disagreement to speech language (which only have receptive goals listed....somehow E's supposed to magically acquire expressive goals) and requested expressive goals for our next meeting.

So, we're waiting to talk to the OLRS attorney and will move from there. I'm guessing we have to play the delaying game, but maybe not as we have documentation from our private SLP and ENT (which is on the way) stating E's use of sign as her primary form of communication. Given that and the admission from the staff (which we have on tape....highly recommend recording all IEP meetings), and the fact that without someone to interpret in E's primary form of communication they're denying her access to FAPE (she can't access the curriculum without an interpreter), I'm not sure they have too strong a leg to stand on. Will update as we go along.

Gearing Up

Tomorrow, Big Daddy & I meet with IEP team. In May, we didn't sign the IEP because it was singularly lacking in the necessary accommodations to fit the Little Peep, specifically her language and communication needs. Little Peep signs. A lot. Like knows all the signs from the Signing Time series (yes, Baby Signing Time, Series 1 & 2, Sing & Sign, the Practice Time). We've moved on to others even though they're not as good.

The problem is that she needs language now, not just vocabulary. So in May we asked to have someone proficient in American Sign Language in the room. We were denied with the following excuses:

• Her fine motor wasn't good enough (crap, she does approximate some signs, but what better OT practice than finger spelling the alphabet - which she does)
• She does have expressive or receptive language (duh, that's why we need someone to model it for her)
• What if she's never verbal; how will she communicate in her community? (yes, like people who are deaf or have hearing loss can't function)
• The speech language therapist for the school offered to cut out more pictures from the ASL dictionary to past around the room to help teachers/aides/therapists (I said that was teaching vocabulary, not language and doesn't demonstrate language in a natural way. I didn't expect to have to explain that to a trained professional)
• We were offered to have the teacher of the child with cochlear implants come in for 15 minutes every day to "talk" to E.
  

We've spoken to other therapists, our private therapists, language people, advocates, and others and we're working on going through the process to get her what she needs. It's just crap that most of the push back and (ignorant) excuses came from the director of the program, who didn't understand that if 33% of E's signs are being missed, it's their fault.

There are other issues with the school/process that we're working through, but think they deny to see which families will continue to fight. Given we're exhausted from all the other things in a day, I'm guessing many families don't go through the appeal process because they trust the "experts." I know our E responds to those who are proficient in ASL and know it will help her develop her language and communication even more. And Bob help the district because I'll take them to the mat to fix this no-brainer for her.

What Its Like In My House Today

Sally Jensen, Kid Lawyer (not a lawyer for kids, a kid who is a lawyer)

Sporty Spice & Super Fly

Giggles LaRue

For Nana

Summer Pictures

I love these pictures of E, taken in early July.

31 for 21, Year 2

Yep. Already behind the posting schedule for this year's 31 for 21. I really enjoyed doing it last year and will give it my best again this year.

Some update about Miss E:

• We're working through her transition stuff for preschool beginning in January. I have to say, it's been a bit of a pain. The Education Services Center social worker that is arranging all the meetings and evaluation only works part time. So I received a call from our EI specialist who said, oh the at-home is XXX day/time and the multifactor eval is XX day/time. Without even consulting whether it was actually convenient. I questioned having an eval, which forms the basis for E's IEP meeting, on the 2nd of December with the IEP meeting to be a couple weeks later (you know during the last week before the holidays or over the holidays) because I don't think it's going to be enough time, nor am I going to give up our break time to schedule meetings that they could adjust. It's not the school district, so I'm not concerned if I'm 'THAT' parent. And even if I become THAT parent, so be it.
  
• E had all her testing from her therapists. For OT, she even moved from the 2nd percentile up to the 5th in skills! Her OT said that it was unusual for kids to move up, but we'll take it. OT is E's strongest skill and even though she's delayed, she's always had good fine motor skills. In PT, we're working on jumping, kicking, stepping over stuff (E doesn't always navigate over obstacles) and riding a bike! In speech, she still has no words, but 50+ signs (Thanks to Signing Time). I swear she adds 2 - 3 signs a week. It's hard to keep up.
• E has become a real stink bug. To my recollection, she's a total 2 year old, defiant, stubborn, selective hearing, etc. She won't eat certain foods she loved, signs for ice cream all the time, will turn into a noodle if you pick her up to remove her from a situation. Some days it's funny, but others it's incredibly exasperating. She's also vocalizing her demands (no words, just grunts and squawks) so that's fun (**rolls eyes**)
  
• She's eating with a spoon and doing a pretty good job most of the time. Yesterday, though, she did spill yogurt all down her, but I think it was her way of not having to eat it because her throat is still a little sore.
• She has a sore throat because she had her adenoids out, turbinates shrunk, and a tube put in her right ear (because the weenie who did them in December didn't get it seated and, needless to say, we no longer see him for that and other issues). Hopefully, this will help her with the constant fluid in her hear which causes mild hearing loss. While she was under, they also did a BAER test, which came back perfect (e.g., no neurological hearing loss).

More about Down Syndrome (October is DS awareness month and the motivator behind 31 for 21), E, M, Big Daddy and life as we go along.

Book

Tonight, I was putting E to sleep. Bottle, rocking, kissing of babies, etc. The usual, except I skipped reading because it was late. Now, true confession. We don't read much with E. Usually, the only reading is before bedtime because it's about the only time she's not moving. She's been looking at them, though, when she's in the pack 'n play while I'm showering and M will read to her while she's in there, so all is not lost. Anyway, I try to read a couple books. Lately, it's been The Very Hungry Catepillar, That's not my Lion!, and The Going to Bed Book. I always read The Going to Bed Book last.

Tonight, after her bottle, I turned her around on my lap to face me (like I always do) and asked for a kiss*. She gestured and looked intently at me, which usually means she's signing something and trying to communicate. I didn't get what she was signing, though, and tried to do our normal post-reading (albeit missing) routine. E wasn't having it. She kept signing (hands together at the base of her palms in a kind of V) until I realized that she was asking for her book (signed with little finger side of hand together and opening like a book)!

She asked to read! I don't know why it seems more than other stuff she asks for (food, juice, music, Signing Time, etc.), but it is. My baby is asking for reading! Woohoo!

*Must remember to a)write about her signing. It's awesome! and b) tell about the kissing (okay, licking really) game we now have.

Summing Up

It occurs to me, as I sit reading through other people's blogs that perhaps I should update all here.

To sum up:

• The big E turned 2 on January 2nd! (party to be held in March)
• Big Daddy had Meniere's and suffered through a low salt diet for 3 weeks before learning that he really has a hole somewhere that is leaking sound.
  
• Big Daddy also has a bum knee that needs some cleaning out via a scope
• We've had three "yellow" days from the M which means that she's broken class rules. This has resulted in many days of arguing and butting heads. If I didn't know better, I'd think I was living with a teenager
• I started a job! Part-time, nonprofit dealing with a preventable birth defect. I'm not linking directly because of the whole work separation thing, but if you know me is other social online areas (facebook, twitter, ravelry, etc.) you'll probably figure it out soon enough
• M is doing both dance (W) and swimming (Th) during the week
• E is doing speech (2x a month), physical therapy (2x a month), and occupational therapy (1x a month). Our PT thinks we should also add in a weekly play group. Yikes!
• For those who asked, M received a Just Like You doll (now named Rosie) that looks nothing like her. In fact her four preferred JLY dolls were: fair skin, blond, brown eyes, freckles; fair skin, brunette, blue eyes; medium skin, curly dark brown hair, brown eyes; light skin, brown-black hair, brown eyes (Sorry can't link because of how American Girls configures the dolls).
• ETA; Oh, yes, I forgot, in addition to our therapy schedule (see above), we've seen our pediatrician for our 2 year well check, had blood work done (thankfully we sync up our endocrinologist and pediatrician labs for only one draw), saw our endocrinologist, and had our teeth cleaned.
  
• Everyone was caught up on their H1N1 vaccinations (Woohoo!)
  

Some (old) photos:

Santa Baby

"Uh Santa, I am way too tall and cool to sit on your lap."
(from my friend Leslie! Hi Leslie!)

Holiday 2009 Pictures



































































(note: E has always clasped her hands together in this really delicate, prim way. I was really happy to have a picture of her doing it. When my mom saw it, she loved how it captured this characteristic of E.)

Babushkas!

Santa brought E play silks which we've loved. I put one over her head, then over mine.
Then, I put them all on her and she thought she was cooler than the other side of the pillow.

Merry Vomitus

We have been felled.

E woke up last Saturday night vomiting after sleeping for a few hours. It's always fun to walk into a room smelling of barf watching your baby/toddler trying to figure out what's happened while simultaneously trying to get them clean and safe while keeping yourself relatively puke free and stripping soiled beds. Thanks heavens for Big Daddy. The throwing up portion of the evening lasted a few hours then subsided. I slept in her room and luckily, there was no high fever. After a couple days of not eating too well, she seems to have bounced back into her normal self.

I came down with the major pukes, though on Wednesday (12/23) night. This lasted through the next morning when major fevers started. Hello 103.5! Luckily, the high ones broke on Christmas Eve, but a low grade one lasted until yesterday (12/27). Unfortunately, ongoing nausea seems to be sticking around, but that's about it. This meant, though, no family activities on Christmas Eve or Christmas Day. Vomit is not a well appreciated gift.

M has been punky all week and actually woke up on Christmas Eve (technically Day as it was 1:30am ish) night and threw up on our bedroom and bathroom floor. After, we had her sleep in our bed while Big Daddy slept in hers. She was super chatty and excited still for Santa. Despite numerous threats that she needed to sleep, I think the most we both got was a solid two hours or so. The rest of the night was spent arguing about needing to go to sleep.

Christmas finally commenced (a real live American Girl!) with calls and Skyping to family who were carrying on without us. M, though, has been running a little low grade temp and been a little erratic in behavior and eating since. Thinking we were on the mend, plans were made to celebrate with local family today (Sunday, 12/27).

Nope. M still had a little temp and we didn't want to risk it with her 94 year old great grandma. Bitter calls made to once again cancel and disappointed girls (who said they were fine) moped around watching videos. There was perking up later in the day with the painting of the triple bunk bed made the day before by Big Daddy. The celebratory ice cream that was enjoyed, however, made a reappearance a couple hours later.

So, here I sit, tucked into a nest of pillows of blankets on M's bed while she is finally asleep. She tried water a little too soon (I tried to tell her that it would end badly. Unfortunately, this is my trait in her that things must be experienced to be believed.), so two more episodes later, she's finally out and we'll hope this is the last of it.

ETA: She woke up shortly after posting and threw up a little. Big Daddy held the bucket and I held hair. At the end of the episode, she asked for a washcloth for her face. I held the bucket while Big Daddy went to get one. I told her to wait a minute and she said, "I'm trying to stay calm."

ETA: Also, I should note that she was a great trooper, making the bucket for about 98% of episodes (the first one caught her a little, but not totally, unaware. Seriously, she was great. After posting, though, she was too hot she said, so after the "I'm trying to stay calm," incident, she got in the tub. Then, after returning to her bed, we had cool cloths on her head. She firmly rejected any ice chips, but liked a cool cloth. Ibuprofen was successful around 11:00 and sips of water commenced around 3:00 a.m. chasing a second dose of motrin. Popsicles and water have been the order of today, so we'll hope for a measured recovery that will allow for the twice-postponed Christmas to be successfully rescheduled.

Riding on Mommy (Edited)

M, January 2005 (20 months)























E, November 2009 (22 months)


















ETA: M, October 2004 (17 months)
This was the pictures I was originally thinking of. Big Daddy emailed it to me after putting it with the Little Peeps (above) picture.

Giggles

Official 2009 Halloween Report

Pumpkins

This was the first year we carved pumpkins.

M gave me the inspiration for how each should look (click on image to enlarge):


















Note the following:

• When asked what E will be for Halloween, we said sleeping (I don't mess up sleep schedules for kids who aren't allowed to eat candy, tell me what they want to be, or walk. Maybe next year), so she drew E's pumpkin with Zzzzzzzs.
• The stencils are from the little book that Nana sent.
• Yes, there are pumpkin guts on the page.
• I did make the freckles with an awl, but they didn't show up when lit.
  

Then, while Big Daddy wrangled The Girls, I carved very carefully:

















(l-r: Mom, Dad, E, M)

We included the one (far left) that M got to bring home from school.



















Then tested for proper glowing:

















Then placed them on the porch.

Trick or Treating

Costume on (notice the layers underneath, it was cold!) and treat bag ready, M and Big Daddy set off.

Usually, they (M & Big Daddy) do the gathering while I distribute. This year, M asked if we could each do half, so they returned after 1/2 the street and M & I set off after donning my costume (sorry, no pictures were taken). My costume was a little tiara, feather boa, wings (which didn't fit), and a wand so I could be a moonlight fairy. I was lovely if I do say so myself (and because no pictures exists, you'll have to believe me!).

We did our street, plus the neighboring one where there was way more action. Our street, in comparison, was dead. We think because we don't have great lighting at the ends and the houses on the end weren't participating tonight that it may have seemed too dark. Also, because our street dead-ends into another one (versus letting out onto two major streets), I think this deters people from knowing how to manage working the entire neighborhood.

M was really funny and had a ton of comments on her costume. Of course, we thought hers was the best, but I think it's refreshing to see sweet and charming rather than some costumes proposed for little girls.

Anyway, we had a great time. M was exhausted when she got home and despite efforts to keep her up a little later than normal (grrr time change), she was in bed a little after 8:00, worn out, I think, from all the excitement and the chocolate!

Now...only 54 days to Christmas!

What It Is, Part 246549841

From another mom:

Non-offensive Language 101