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!!