Friday, November 02, 2007

Getting there

Since Josh is on vacation this week, I took the opportunity to run the remainder of KayTar's district paperwork to the intake school yesterday. I love public school offices, the scent, the sounds, the paintings and inspirational posters on the walls. I attended school in this district from kindergarten through eighth grade, but this is my first experience as a parent. BubTar is in private school, a decision we made long before having children. I never thought we would be involved with the public school system. We like the smallness of his private school and the challenging nature of the academics, and we also like that it teaches Christian curriculum, because we are, in case you didn't know, Christians. But there I was yesterday, standing in my past and looking towards my future in that office.

I don't usually discuss my extended family on my blog, because they don't know about my blog and I feel it is a breech of their privacies to talk about them without their knowledge, but I am making one tiny exception. My mother is strongly opposed to our putting KayTar into the district for assistance. She believes KayTar doesn't need the help and will catch up on her own by Kindergarten. She feels that they will label her and no teacher will ever give her a chance to succeed on her own again. She will be dismissed as soon as the teachers see her file. That is really just scratching the surface of her feelings on the issue, but I won't go any deeper. I've tried explaining that not helping KayTar now, before she gets into school, is setting her up for future failures in the classroom. That if we don't help close her gaps now, she will be at a disadvantage when she starts Kindergarten. But she still disagrees, public school is the enemy. It is not to be trusted.

I've been very apprehensive about this entire process. I've heard from so many people that I have to be prepared to fight for services. That districts are stingy with services and it will be difficult to get KayTar the help she needs. That the district is the enemy until proven otherwise. And every experience I have had interacting with the district has been in opposition to these views. I'm not wholly letting my guard down, but each meeting had been reassuring and helpful. I don't feel like I am in a battle, I feel like I am part of a team. They have explained the process, taken time to listen to KayTar's developmental and medical needs, to ask questions, to show me around, to help me make sure my ducks are in a row. Everyone I have had the pleasure of meeting has been caring and warm, truly interested in KayTar and her needs.

Yesterday, the woman who was helping me with paperwork asked me to give her another quick review of KayTar. I got to the speech issues and said, "Since getting her hearing aid, her speech has really taken off. But a big portion of it is mimicry and repeating things she's heard before in such a way that---" And the woman interrupted me, "It makes it seem like she speaks normally and understands more than she really does?" It was such a pleasant surprise to have my sentence finished, I said, "Yes, that is it exactly." Later in our conversation she said, "I don't think I formally introduced myself. I am the speech language pathologist." And then it made sense. But I felt so good about the fact that this woman would be the one evaluating KayTar's speech, someone who understood the nuances of her backwards means of language development. Someone who won't be fooled by KayTar's fancy-pants mimicking.

I brought home a pretty hefty questionnaire yesterday and filled it out. KayTar looks really difficult on paper, you know.

Therapies:
Ocupational
Speech
Physical
Developmental

Delays:
Physical
Speech
Self-care
Feeding

Under medical care for:

Neurological episodes
Developmental delays
Unilateral hearing loss
Brain lesions
Eye deviations
Drop attacks
Feeding disorder
Light sensitivity
Chronic constipation

Main concerns:
Speech/Physical development
Medical Issues
Sensory/Feeding aversions

Goals:
To be conversational and have a good understanding of language
To be able to function in a classroom
To have appropriate peer interactions

And so on for 8 pages.

But in person, she isn't really that person. Well, she is, obviously, but what I mean is, so much of that just is not evident. The episodes still happen as they will, but on a normal day, there is not hint of them. Her delays are becoming less and less obvious, though still there. Her physical delays are probably most striking, because she can't run and jump and climb like other kids her age. She has trouble walking on grass (although she is beginning to do better!) and on inclines. She falls more than other kids, too. She wears a hearing aid. Her lesions are internal, of course. The eye deviations happen fairly often. It has been months since the drop attacks happened last. Her feeding issues are a non-issue unless we're sitting down to eat with someone. The light sensitivity can be very obvious when she's in the throes of it, but recently, we have had good days. The constipation is largely controlled with medication. Looking at her, you don't see the laundry list of issues, but they are there nonetheless. And filling out the paperwork is always a trip. I think she'll end up with a 5 day, self-contained classroom placement, just because of her propensity to have a medical need during school hours. I don't think they'll put her in the combination classroom because the ratio is higher and they are less prepared to deal with the situation if something does occur. We will see, though.

Yesterday I was able to see the testing classroom. It was delightful. The walls were covered in familiar characters and preschool-friendly decor. The centers were filled with toys that KayTar would go nuts for. I saw many, many familiar toys from both our home and the therapy center. It looked perfect, like KayTar would be excited to come play and do well in the "testing" atmosphere. All in all, I left feeling even better than I previously had. Each encounter just assuages my fears just a bit more. I know that there is still a possibility I will need to put up a fight to get her services, but more and more, I feel like we are just joining a new team that will be just as beneficial as our ECI therapy team has been. I'm excited to see what a classroom experience will do for her. I'm starting to believe that this could be a very, very good thing for our little KayTar.

KayTar contemplates donut.

29 comments:

Amy said...

I agree with you Kyla, I think this going to be a very, very awesome thing for Kaytar. ECI therapy has done so much, just imagine what this can do for Kaytar.

As far as your mom, I think our parents just come from a generation where this kind of help wasn't readily available back then. In a sense, they just don't know any better. Doesn't make it right, but I believe that is the line of thinking regarding lots of issues. (reflux vs colic comes to mind too)

Family Adventure said...

First of all, I love that last picture and the caption.

Seriously...one of my very good friends is a teacher in a public school. And she has said this over and over again..if you have a child with special needs, you have to go the public school way. That's where you will find the services and the knowledge that will help your child. (I am surprised that your mother doesn't share this view, since you went to a public school, too).

Of course there are horror stories, and sometimes discontent can also spring from misguided parental expectations. But to outweigh this are countless success stories! And with parents like you, I suspect Kaytar is going to exceed everyon's expectations. I can't wait to hear more :)

Heidi

bubandpie said...

Cool header!

I've had some commenters on my blog who very passionately oppose diagnosis and treatment. It's a difficult issue to address, really, because it involves predicting the future - there's really no way to prove either side.

And of course on Tuesday we were placed in a position of having to decide for ourselves what route to take: diagnosis (with whatever potential stigma that carries) and treatment, or postponement.

The bottom line for me is that I can't just do nothing and hope/assume that it will all be okay.

~aj~ said...

I think it all just sounds wonderful. I'm sure not all public school systems have such good programs, but it sounds like yours is top notch. I'm so glad you're taking advantage of it.

I love that picture of KayTar. Her hair looks soooo soft and shiny!

Kristin said...

I am so glad you're having such a positive public school experience. Well, minus your mom. :) But BIG HIGH FIVES to you for not listening to your mom on this one like a lot of other parents might. I think you're doing the absolutely right thing for KayTar. You guys know her best, for sure and I'm proud to be able to say that now I've met that wonderful little girl. She's delightful.

Hetha said...

Wow, this post sounds totally uplifting! I am very excited for Kaytar as I think she's going to thrive in this setting. As for the public school, it just depends on the school and staff (as well as the tax base of the community) as to what your experience will be like. I have taught in a few public schools and I can say that Kaytar's team will be totally delighted to have such competent and communicative parents to work with.

Thanks for all the prayers and support, our guy is home and doing so well now. You'd never know he had major surgery 3 days ago.

xoxo

motherbumper said...

First - the banner made me laugh.

Second - I understand (in my own ignorant way) the apprehension. And by the sounds of it, you ARE getting there - one carefully placed step at a time.

thirtysomething said...

Oh, that picture is such a perfect capture. eat that donut baby girl, just sink your teeth in!

I also think you are going the right way, with the special services in public school. As a preschool teacher, I often see children who can benefit from early intervention and it really does make such a difference when the child is older or mainstreamed.
I don't think that just because a child is diagnosed and participates in services, that he/she is labeled. I am sure in some cases, maybe, but fortunately more is being learned and fewer kids are stigmatized just because they receive special services at some point in their educational 'careers'.
You are following your gut feelings and they won't let you down. Hugs to you for the dificulties that you overcome with grace and love each day in the name of being a Mom.

Oh, I read the previous post, and the costumes are great!

Sarah said...

I am glad that you are comfortable with this. It sounds like it will be a very good thing for Kay Tar!

kittenpie said...

I'm glad to hear that's beeen your experience, Kyla, that is fantastic. What a nice feeling.

nomotherearth said...

Personally, I think that many people put the public school system down unnecessarily. A kid gets out of school what they put into it. You can "learn nothing" at a private just as much as at a public school. (There are of course, some not so good public schools, but I still think that they're the exception).

I'm glad that KayTar is going to a good place, and get whatever help she needs.

Julie Pippert said...

Great new banner!

Okay well you know I agree with early intervention. And public school exists, in part, to make this available for everyone. I've largely heard positive stories, so I'm glad you are one more voice for that.

I know you are a proactive parent and I also know that KayTar is getting the best because of that.

In the end, we can do what we think is best, and in the end, that means we did our best and in the end, that's the best we can ask for, hope for and get.

KayTar may look complicated on paper but I don't think anyone only ever considers paper. It's just so one-dimensional. ;)

Glad---so glad---this is going well, and sorry that you have your mom who I know you care about dissenting with your choices.

(HUGS)

Julie
Using My Words

Katie said...

Now, I have to say, don't we ALL look different on paper? ;)

I think public schools and the exceptional children's programs are, in a large respect, what you make of them. Unfortunately, once you get a bad taste in your mouth, it's hard to rinse it out =(

I'm continuing to cheer you and Kaytar on as you learn your place within the schools.

Emily said...

Hi Kyla! I'm also glad you are feeling good vibes from the "team" at the public school! I just have to put my 2cents in about that topic...
I always swore my kids would go to private Catholic school - partially to get the Christian values, like you said, but more because I thought Public = Bad. You get what you pay for, right? Well, I have since changed my ways. As it turns out my kids are in public school and I wouldn't have it ANY other way! But, I'm actually commenting to tell you about my friend. She thought like I did, private school all the way. Her oldest (now 9) was showing signs of a learning disability, nothing way out there or with special medical needs, but rather something that has become quite commonplace and easy to deal with these days (with the right tools of course). The private school was unwilling or unable to accomodate his needs, partly because of the politics and exclusivity mindset of the other "paying customer" parents. They wanted no "distractions" or "anomalies" in their classroom. Her pediatrician warned her it would happen, because he saw it happen in all types of private schools, yet she was still shocked that she had been paying into a system that was so against the IDEA of a difference in a child's learning style. In order to get services for her child, she transferred all her kids to her neighborhood school. He is now thriving and LOVING school because of the services that the public schools have provided. She has said she feels like she's on a team too, rather than a fight to get the services, it's been a pleasure!
Sorry so long-winded, but I was so saddened by that story, and so proud of that public school success story that I had to share it!

Lisa b said...

Kyla that really seems like a great plan for KayTar. It is odd that your mum is so opposed to public school given that she put you through the same system. I hope she comes around once she realizes how much the program helps KayTar.
I can relate to a lot of what you have written here. KayTar looks so gorgeous, especially in that last photo, and it is such a contrast to the lists you have to compile.
I'll continue to cheer you both on as you scratch each item off those lists!

natalie said...

I'm sitting here debating about responding to this post. I always get so fired up when people insist you have to fight for services for your child in public school. Then I remember that not all public school systems are like the one where I teach (and on a side note: M will most probably go to private school, but for very different reasons and I'll probably go to the private school to work when it's time!). We do complete inclusion in our district. There are two elementary schools, out of 31, that house self-contained classrooms. There is a special needs preschool facility that is completely separate from all elementary schools where there is a ratio of 3 typical students to 1 student with any type of special need (Down's, ASD, physical, etc.)so there is LOTS of peer modeling. Students can and are encouraged to begin there at age 3 so there is roughly two years of preschool prior to kindergarten. There are HUNDREDS of cases of students who attend this preschool with special needs and move into a typical kindergarten class with no accomidations at all.

In our district, the parents are encouraged to be involved with every aspect of their child's education. We hold several "team" meetings each year for every child who has a SST or IEP. I've attended three meetings where someone from the BOE provided transportation for the parent so she could attend. There have been a few times when parents want certain services increased, but due to budget restrictions or time allotments, those services could not be provided. That's the ONLY time services have been denied. Usually, the classroom teacher is more than willing to help fill in for the need in those cases. When the child was in my classroom, I just needed the Speech/Language Pathologist to give me some strategies to use in my classroom.

As the parent, I encourage you to keep all your paperwork organized and to keep notes from your meetings in case something slips through the cracks. I hope you find that you are able to trust the public schools and know they are doing the very best they can to teach ALL children. And I hope that your mother recognizes how valuable this experience can be for KayTar. Good luck!

Aliki2006 said...

I think you're doing the right thing...

This struck a note with me, too, because I can't even talk much with my mom about Liam's Asperger's. She thinks we've labeled him, and that he should find "his own way" without any help, despite the fact that he so clearly needs it in many ways. Grrr....

I was looking through some old medical files, etc. and I was struck by the similar things Tessa and KayTar went through--when Tessa was KayTar's age we had lots of eye deviations, balance problems (she still couldn't go up and down stairs without crawling), she was failure to thrive...it's amazing how it can slowly change, though. Now, at only a few months shy of 4, things are so so much better.

I write this to hope that KayTar will soon be on the other side of all this, or at least well on her way.

natalie said...

Oops...one more thing. As a public school teacher, I would encourage you to NOT be worried about any labels. That's for another post, another time, but don't worry about that at all.

Janet said...

Aw man, I can't see the donut picture!

I'm late to the table, the other commenters said it all so well. Everyone will have their own opinions about your kids. You're doing what you think is best for your sweet girl, just like a mama is supposed to.

Beck said...

Your girl is going to have SO much fun!
Sometimes you just have to let mothers have their say and then go ahead with what you have to do - it's hard, though, and something I live with all the time, too.

Junie's Blog said...

I'm so glad you are having such positive experiences! I always hope and pray that all parents get that feeling!

flutter said...

I just wanna touch her curls.

This sounds amazing for her

Oh, The Joys said...

Every time I read your blog, and I mean EVERY time, I am humbled by your perseverance and love.

I am.

Karen said...

I just want to say that some many people have difficult stories of fighting for what they need in the district -we tend to hear more of those, but sometimes it just seems to work out - we are in a little back and forth negotiation ourselves at the moment, but with very good will on both sides and really it's all because how well LP is handling school - better than we thought, so that's not such a bad problem for me to have - and our team is very very smart and kind. Sounds like yours is too!

something blue said...

We only ever do what we feel is best for our children. You are such a wonderful mother! There is great comfort in knowing that our children are going to a good school.

Magpie said...

I think you're right - that it'll be a great thing for her.

Interesting that your mother is so opposed to public school for your kids when she sent YOU to that same school.

Lori at Spinning Yellow said...

I echo what most people said (like Julie P.) about believing in Early Intervention. It sounds like things are going well and that is great!

We were told (by friends, relatives, etc.) that our son would never qualify b/c he's so smart and doesn't have easy to see issues. But as soon as the professionals evaluated him, they knew what he needed and got it for him. I had a similar situation to your example about the speech therapist, but with an OT, where she said, "oh, I noticed how he talks out of the side of his mouth already and marked it down." I didn't even have to explain. Thank goodness!

I read on BubandPie all the debate about "being labeled" and I am now getting so fired up that I might need to do a separate post.

Here's the deal: If you chose to do nothing for fear of the future consequences, your child doesn't get to take advantage of the services they could have NOW. Why are people so afraid to get help for their children? We are supposed to be helping them not wishing away problems and putting our heads in the sand! If your child gets "labeled" a certain way and it turns out later to not be relevant you can bet the people in charge (who have to justify paying for the services) will say that your child doesn't need the help anymore. They don't WANT your child to need services!

OK, I'm sorry to come here and rant!

Jenny said...

It sounds like a good place for her.

And never forget...you are the mommy and you know what's best for her.

dawn224 said...

I haven't worked early childhood, but I don't think it's uncommon for EC kiddos to have multiple services. Most qual for speech - and depending on your district, she may never need to requalify for service, she ca be carried over due to "continuing need" - or your district may be more for looking at scores... but that's for 3 years from now at he next assessment.