Wednesday, August 20, 2008

School Districts, Early Start, and Parents' Group, Oh My!

For those of you who don't know yet, Cherylle is a Regional VP for Easter Seals Southern California, a disability services provider funded largely by the regional centers of California, which in turn are private non-profits that contract with the California Department of Developmental Services to provide and coordinate services for people with developmental disabilities. She also used to work for the regional centers, at Kern Regional Center, while we still lived in Bakersfield. That's quite a mouthful, but it means that she has loads of experience already with disability services, and how they are acquired. We knew, partly through discussions from the POLP list, and partly through Cherylle's experience, that Caitlin would qualify for some services at least, so about two months ago or so Cherylle started the process to get Caits seen and assessed by the regional center. However, despite our laundry list of potential complications from achondroplasia that we provided initially, the regional center determined that her diagnosis did not qualify her for services from them. Instead, they referred us to the Early Start services offered through the school district's special education department. Now the reality is that Cherylle knows ways around the early decision by the regional center in North LA, but isn't quite ready to open that political can of worms quite yet. They are one of her major funding sources, after all!

So anyway, we first met with Cindy from the Early Start office in early August, who came to our home and met with us and with Caitlin to do the intake interview. This was basically a screening exercise which allows them to determine if it's worth doing the full assessment. Cindy was very warm and friendly, and was very interested in Caitlin and her condition. We provided her with some of the info from the POLP files, such as the motor skills chart and growth charts, and she really tuned in. She was very interested in seeing what they could do for her!

A week later or so, we got a visit from Erica and Karen. Erica is the Service Coordinator for Early Start, and Karen is our case manager. The two of them also came to our home, chatted with us, and observed Caitlin for about an hour and a half. Again, they were very friendly, and very interested in learning about Caitlin and about achondroplasia. They had a lot of questions, and paid close attention to the answers. We had lots to say, of course, and they paid attention to that as well. I printed out everything I could find on achondroplasia, and they were very excited to receive it. They really seemed interested in what our concerns were for Caitlin, which was nice to see! They took lots of notes, and set up an an appointment for the followup, when we would work on the IFSP or Individualized Family Service Plan, for August 13th.

Last Wednesday, we met them at their office for the first time. They presented us with a typed version of their assessment, which was very fun to read. They had lots of wonderful things to say about our entire family, and were very complimentary of the way we were raising Caitlin, and about our involvement with the LPA and with Caitlin's medical care. It went through segment by segment, describing Caitlin's development in the major areas of speech, socialization, vision & hearing, gross motor skills, fine motor skills, and a few others. She actually scored at appropriate age level in every area except for gross motor skills, where she definitely had a few things that she was behind more typical development in, like crawling on hands and knees, "cruising" along furniture, and transitioning from upright to the floor without just letting go and flopping. As y'all may have seen on Facebook, she's doing a great job of pulling herself up to stand on her own, and does it on anything she can get her hands on. Because of this concern they referred us to a physical therapist/occupational therapist from California Childrens' Services. We should hopefully be hearing from them anytime now... Also, because of their concerns currently and our concerns for the future, they set us up with a speech pathologist from their program to work with Caitlin's speech development. She's had a lot to say already - that will have to be a future post!! No really, I mean it... LOL

They also suggested that we take part in at least two other services they offer - the first is a parent support group for parents of kids with special needs, where parents (like POLP and the blogging world, primarily moms! LOL) can get together and talk about their issues and experiences and help support each other. Cherylle and I have attended this together two weeks in a row, now - despite the fact that I'm the only dude in the place, it's been really great. Like attending an LPA event, it's nice to be in a place where people know what it's like to be different than others, or to have outsiders not understand or even accept your child.

The second is called the Lunch Bunch - it's a weekly chance for the speech pathologist to observe the kids with their eating behaviours. Part of what I'm saving for that separate post on speech is the correlation between speech and eating - they both involve many of the same movements in a small child, and fixing one helps fix the other! It takes place about 15 minutes after the parents' group - you bring a snack for your child, and the therapist brings something for them to try, and everybody hangs out and chats while the kids munch. It's really kinda fun, but after the first week we decided to only do that every other week for now - the more we tack on on Wednesday mornings, the more work we both miss, which just makes things more complicated...

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More on all that later - meanwhile, I have good news and bad news about Caitlin's new daycare. The good news is that despite Caitlin's pickiness, she's finally warmed up well to Ms. Josie and Ms. Lilly. In fact, when I take her there in the mornings, she actually leans out of my arms and reaches for Ms. Lilly, and doesn't look back as they walk away! Yay! It really sucked to listen to her cry when we dropped her off in the morning - she's so dramatically different than her brother, who never cared where he was as long as people paid a little bit of attention to him!

On the other hand, the bad news is that despite the fact that Ms. Josie was the one who offered to open her home to specialists for Caitlin without our ever asking for it, she's now changed her mind. Since the beginning she's been concerned about traffic in and out of the house - she doesn't even like to have kids dropped off past 10am because it disrupts the flow of things and leaves some of the kids thinking that their parents are coming to pick them up. Now, she's added concern over liability - she's talked to her insurance company, and despite the fact that the specialists all have their own liability insurance coverages, her agent has assured her that she will still be ultimately responsible for anything that happens in her home. And apparently she has reason to be concerned - when her daughter was receiving therapy, her therapist dropped her and left a mark on her forehead that you can still see now, several years later. Unfortunately, she thought of this well after we used her openness as a major deciding factor for putting Caitlin in her care - we both understand her concern, we're just frustrated that she changed her mind after offering it voluntarily!

Oh well... Cherylle's already worked out an alternative plan with Karen from the Early Start Program to meet later in the evening in our home a few times a month - we'll see how that works. Also, hopefully things will change at Josie's after we've actually been there long enough to build some actual rapport.

Till next time!!













Tuesday, August 19, 2008

Where it started for us...

Since I still haven't managed to get my backside in gear to finish the blog about Caitlin's experiences over the last few weeks with assesments from Early Start, I thought I'd repost for y'all the blog I posted to MySpace a week after Caitlin's diagnosis, long before I knew any of you all. I swear I'll have the other one up soon! Yes, Jaime, I know you beat me... it'll be there soon! LOL

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Monday, November 12, 2007

My daughter, the little person!
Current mood: happy
Category: Life

So for those of you who don't know yet, which is probably most of you, Cherylle and I discovered last week that Caitlin has Achondroplasia, or "dwarfism" in English. Achondroplasia is the most common form of dwarfism, anyway, and accounts for over 70% of cases. It's still pretty rare, though, and only occurs in one out of every 25,000 births or so. One author I read recently, in a book he wrote about his daughter with the same condition, likened it to Ed McMahon showing up on your doorstep with a check.

What this means, realistically, is that she likely won't ever be taller than 4 feet, and will have different proportions than the kids around her.

That's it.

Sure, that's enough for most people. Looking different than everybody around you is often enough for any kid to deal with growing up, especially in junior high. Not being able to see over the counter at the bank kinda sucks, too. Still, considering all the disabilities that Cherylle sees every day in her job with Easter Seals, that ain't that bad. There are no serious health risks associated with achondroplasia; no shortened lifespan or lower IQ come along with it. In fact, people with dwarfism have a slightly higher IQ on average than the rest of society.

So, all in all, that ain't bad. If any of y'all have any questions, please let me know - while I'm still far from being an expert, I've already read enough that the National Geographic channel's special on dwarfism the other night was old news, and I'd be glad to help out. And if you know of anybody that's affected by dwarfism, or has a little person in the family, please feel free to point them in my direction.

Till next time!

Currently listening :
The Real Thing
By Faith No More
Release date: 15 June, 1989

Monday, August 11, 2008

Just about me, not the kids... sorry!

Well, this weekend was amusing, but kinda sad at the same time. I've been enjoying the amount of time I've been able to spend at home with Cherylle and the kids over these last few weeks of freelancing, especially after coming back from the 5 days in Palm Springs, but this weekend I ended up in Orange County working while she took the kids up to Bakersfield to visit her parents. It's always fun hanging out with the guys on the crew after the day's over, being way too loud in the hotel bar, but it's not the same as being at home with the family. You know this means I'm getting old when I start saying things like that!

I'm not sure how this works with women, since I'm not a girl and never have been in my live, but guys are trained from birth to go out and beat their chests and provide for the family. Staying out late and being independant are kind of expected, at least by other guys, since it proves you're the man and in charge and in control and not too sensitive. Me, though, while one night is fun, more than that and I'd just rather be at home with Cherylle and the kids. This makes me feel old, honestly, but it's an oldness that I'm happy with. I've always been a bit of a party animal at heart, and because of that I've always wondered when I would settle down internally and really be happy with where I am, and it's nice to see that I'm finally doing that :-)

Since I think the kids are much more interesting than me, though, I will end this with a few pics from some of their last few adventures...

Tuesday, August 5, 2008

Daycare Update:

So Cherylle found several home daycare sites to investigate this afternoon through CCRCLA, which is the Child Care Resource Center of Los Angeles. She called ahead and got two appointments for tours, both in our area, one for $125 a week and the other for $185 a week. Yep, that's anywhere from $300 to $500 less a month! I was running late trying to make it for the first one, so she went inside first with the intent that I would join as soon as I got in town. Five minutes after she'd gotten there, I got a text message saying "No way in HE-double hockey sticks - I'll meet you at home." Apparently from the minute she walked in it was disgusting - the yard was all dirt, the toys (of which there were many) were dirty and in poor repair, the baby bassinet that Caits would be sleeping in was piled with junk "since I don't have any babies right now" and the entire tiny house was buried in bric-a-brac - walls, counters, everything. Our daughter spends as much time at daycare every day as she does awake with us, so there was no way in Hades that we were gonna accept a place that we couldn't stand to hang out ourselves.

Stop two was a bit further away than we were originally hoping, and a little more expensive than we wanted to find, but we figured we'd visit anyway at least to get a sense of what the current home daycare market was like. We pulled up, and it was a beautiful house in a nice neighborhood (nice defined as "one we would like to live in" - not all expensive neighborhoods are nice, just as not all cheap neighborhoods are bad...). We got inside, noticing immediately that she was wearing her cordless home phone (we've been placed before that can't even answer the phone!) and that the home was very attractive and clean. She'd converted her large den into the kid's play area, placing colorful rubber playmats and industrial carpet over the tile floor which made it very comfortable. There were also lots of little kids' toys in the room, but all neatly stored and organized, much of which was no more than a year or two out of Caitlin's age range. She had two playpens converted to infant/toddler cots in the living room next to the den, easily within hearing range of the main area, and a long row of high chairs near the table for mealtime. The backyard was even better - not only were the toys nice and clean, but the lawn had been replaced by one of the high-tech attractive artificial lawns - long, variegated blades of "grass" that was very comfortable to the touch and made a nice, soft, and clean playing surface for the little ones.

Talking to her was even better. Not only did she have many of the same opinions as us on parent responsibility and creating a loving, nurturing environment for the kids in her care, she restricted the ages to 3-4 at the oldest and was a big fan of Sunshine Day Care, the preschool/pre-k program that Evan had just finished. In fact, the reason she had openings right now was because she just had several kids leave to go to Sunshine since they were now old enough for that. She also had a live-in housekeeper/teacher's aide who was there helping clean up while we were taking our tour. And, while we still need to provide milk for Caitlin (since every parent has different opinions on brand, milk-fat content, etc), home-made food (two snacks and lunch) was included in the price. That's worth at least another $15 a week or so, if we don't have to buy any more baby food jars!

The real clincher, though came when we went back into the playroom and she asked if she could hold Caitlin. We'd explained briefly outside about Caitlin and achondroplasia, and the first thing she did when she picked up Caitlin was to lay her down on the floor and start exercising her legs & arms the way a good PT would do. She then asked if we had talked to the Regional Center about Caitlin yet (for those of you outside CA, the Regional Center is a network of centers throughout California who collect disability services funding from the county, state, and federal government and then locate and pay for services for developmentally delayed individuals. Cherylle actually used to work for the Kern Regional Center before we moved to LA!). She then explained that her son had been born premature with a very low birth weight (1 pound!) and had been expected to not only have many health problems, but to never be able to walk. Now, thanks to the Regional Center and its services, he was a healthy, happy three year old who was not just walking but he was running! She told us that if it was okay with us, she would be happy to do many of the same gentle exercises that she'd learned for her son with Caitlin!

As soon as we drove away, we looked at each other and asked each other nearly the same question at the same time - "I liked her - what did you think?"

Whew! One major decision completed... Yay for us!

Welcome to my new blog!

Okay, after posting a 5 paragraph response to Kim's blog last night that actually ended up being about what was going on in our household, I finally decided to get off my lazy backside and start an actual blog myself. Cherylle's probably actually better at telling these stories than I am (God knows she has a better memory!) but she's usually too busy playing Word Twist and Blocky on Facebook to write anything so I guess it's up to me :-)

Anyway, after some minor personal drama with my work situation, starting with getting laid off two months ago, which came as a complete surprise considering they'd just given me a 25% raise on my base salary, I've finally been hired as the new Master Electrician for the Theater program at CalArts. For those of you who don't know what any of that means, a master electrician is the person who takes a light plot (sort of a blueprint for lighting) from a designer and turns in into reality in the theater. CalArts (also known as California Institute for the Arts) is a world renowned training college for people who want to be professionals in all disciplines of the arts. It was actually founded by Walt Disney, who wanted a place where artists would train artists, which is still the way it's run today. If you check the bios of many of the faculty, they either are or have been major players in the professional world. The theater lighting design program, with whom I will be working, is headed by Don Holder, the Tony award winning lighting designer of The Lion King on Broadway, among many other amazing credits!

Along with this big change, Evan, who is now 5, starts Kindergarten next Wednesday! He'll be going to Newhall Elementary for Kindergarten, then getting picked up by Sunshine Day Care for their afterschool program. We really wanted him to not have to deal with transportation at this age, but unfortunately Newhall Elementary does not have any after school care onsite, and we already missed the date for "open enrollment" when we could have applied to transfer him to Valencia Valley Elementary, where the Sunshine site is located. The one good thing is that he'll get to meet back up with one of his friends from Pre-K, Ryan, who will be going both to Valencia Valley for Kindergarten, and to Sunshine onsite for after school care as well.

Caitlin, however, we're not quite sure what to do with yet. We're really happy with the care at her current daycare, at least in the baby room. The two teachers in there, Miss Victoria and Miss Jennean, balance each other really well. Miss Victoria is more the loving grandmother type, and Miss Jennean is the strict one, and between the two of them they're perfect! Caitlin's really done well there, getting bigger and more adventurous, and the low windowsill they have on the windows that look out onto the playground have been exactly the right height for her to practice pulling herself up with, which she's now gotten very good at! We also love the fact that at a child care center like this, they keep track of all her "vital stats" throughout the day and give us a "report card" at the end of the day so we can see how she did. They track naps, meal/snacktimes, and diaper changes, all of which really help us know at home what is really going on with her.

The problems here are twofold, tho. While the $250 a week (yep, a week!) that we pay there is in line with most of the other large child care centers, it's still a whole lot of money. The home day care where Caitlin was before was only $150 a week, although there was no report card and she spent most of the day in a bouncy chair so she wouldn't get run over by all the older kids in the house. I just don't know how to justify that, but I know that saving $400 a month roughly would be really useful now with my new, lower paying job! Eesh...

The other problem is continuity. We would really like to be able to have the kids go to a place that they can grow up in, not moving them around all the time. On the other hand, Evan went to Caitlin's day care center for summer camp this summer, and we were really unhappy with the organization and supervision of the older kids. I know this was a summer camp, which is traditionally run looser, but it was at a major day care center, and where we had been considering sending him to Kindergarten. Honestly, there's no way I'd put my 5 year old in with that group for school - he spends as much time with them as he does with us, and I want the influences on him to be much better behaved! Plus, we've been getting to know some of the other parents at this school, including the parents of some little ones who have moved out of the baby room and into the toddler room, and they're not happy with their new situations either. We've heard stories of kids coming home filthy and obviously not cleaned up over the course of the day, of teachers yelling at the kids, etc... Eesh again! Obviously Caitlin won't be attending past the baby room, which means we have 6 months at most to make a decision about that...

Anyway, I wanna end this on a more positive note, so I'm just gonna out myself as an 80's hair metal fan, and tell you how much I freakin' love Whitesnake. While I was browsing Facebook and attempting to set up this blog site earlier, Fool For Your Loving came on my iTunes library and I just had to sit back and crank the tunes and fade out for a while... man, that was cool!