Well, despite pride being one of the seven deadly sins, I'm going to award myself an Attagirl, based on two bits of advice from past online conversations that I picked up and put into action on Joy's behalf. And I'll rationalize the shameless self-congratulation because, hey, I'm sharing the good ideas with all of you, and that has to count for something! Right?
Bit of advice #1 was something we did last year: take a photo of your child to the IEP meeting (the summit at which you put together the Individualized Education Program/Plan that shapes what school-district services your child will receive in the coming year.) Since Joy is too young to attend such meetings, and we were dealing with administrators who had never met her, I glommed onto that advice as a way to give her a physical presence at the proceedings. We were very pleased with the outcome of the meeting and how it shaped the summer and this school year so far, and that photo surely helped set that stage.
Bit of advice #2 was something that I ran across before either Rose or Joy had started with the school district. The advice was to become a "presence" at your child's school as early as possible, so that you are not a stranger to the powers-that-be when your kiddo with all her unique needs comes down the pike. Since Rose started school first, I've been able to volunteer on her behalf and also position myself as an already-valued part of the community as Joy moves toward kindergarten. This year I help kids in Rose's classroom with their reading, and volunteer in the school library as well. I also designed and maintain the PTA website, which brought me to the attention of the principal, and made me a known quantity to be able to raise concerns about last year's poor snow-removal on the city sidewalks across from the school (got it onto the PTA board agenda, people who knew people talked to people who get things done, and there's definitely been improvement!)
Now that 2008 has rolled over into 2009, it's time to think IEP again. Joy will turn 5 at the end of May, putting her at kindergarten age for next fall, but we're leaning pretty heavily toward waiting an extra year. Once she starts attending school, it becomes ridiculously difficult to arrange a full schedule for her intensive autism therapy, which cannot overlap with school hours. (Gah. Don't get me started... that'll be a rant for another post.) Since she's got an almost-summer birthday, she wouldn't be that much older than her classmates with early-fall birthdays anyway.
So, what's the process for delaying kindergarten for Joy? First, I needed to contact the administrator who presided over last April's IEP meeting -- who surely remembers us pretty clearly, in part because it's apparently so unusual to bring a framed photo to the meeting around here. The photo of Joy was a memorable one, riding on the zoo carousel and beaming ear to ear. Then that administrator sets up a meeting for us with the school principal -- you know, the guy who already knows me as a good person to work with because of the volunteering and PTA stuff...
Maybe it's premature to do the "shameless self-congratulation" dance, since the meeting hasn't even been scheduled yet! But, having put into practice those two bits of wisdom from other special-needs parents online, I'm feeling so much better about even the prospect of how this process is supposed to go.
Attagirl, JoyMama!
In unrelated news, I also got some bloggy appreciation from my sister-in-law ARatM (short for Auntie Running-at-the-Mouth). I drew her name this year in the family holiday gift exchange, and my gift to her was a hand-embroidered running hat emblazoned with "RatM". Not only did she wear it for a race on New Year's Day, she changed her profile pic to show off her new gear. Check it out!
11 comments:
You know, I'm struck with two different thoughts about this. On the one hand, you absolutely deserve an attagirl for proactively and preemptively dealing with the school. I am completely certain that being a valued and familiar volunteer will make a huge difference in how Joy is treated, and I'm sure that's true without any malice intended by the school.
On the other hand, I think it's depressing that this is necessary.
I have nothing but respect for how hard you guys have worked to connect Joy with the resources that she needs. You are clearly doing an amazing job, and this is really just one example of it.
Still. I keep thinking about the families that don't have your resourcefulness or your resources. I can't think of many people better suited to do the kind of hoop jumping that is necessary, and I think even you guys struggle sometimes.
It just sucks, you know?
----
P.S. - The hat completely rocks.
I struggle with it too. I think, here we are, white, college educated, and middle class, got it all made, yada yada... So why should Joy get services when others who might not be as fortunate and might not be able to work the system might not get these same services?
Take the speech therapy over the summer that we sucessfully fought for. The school district doesn't employ very many therapists over the summer, so the availability is very limited. That we were sucessful probably means some other family was denied.
But I've come to the conclusion that our job is to be the best advocates for Joy that we can be (Why am I hearing the theme song from the Army commercials in my head? "Be all that you can be...."). I mean, if we don't do it, no one else will.
Don't get me wrong - we are also advocates for improving the system for everyone. JoyMama testified before a state Senate committee about the insurance proposal (with Joy on her lap...), we've written letters to legislators (and encouraged others to do the same) on the same topic. And then there's this little ol' blog, which is certainly a tool for advocacy.
Hopefully, some day in the not too distant future, everyone will get the services they need without having to fight or navigate incredibly complex systems. Until then, we will continue to advocate for Joy on a personal level and advocate for changes in the system at the societal level.
I'm throwing-out a "One Great Big Pat on the Back" to JoyMama. Sharing those two excellent ideas helps everyone who reads them. Pride is a sin when it is completely self-serving, of which you are not guilty. (I've been fearing you took my private exclamation about gossip being a sin too seriously. ?)
The photo at the IEP meeting is a new one for me. New ideas are much admired. New.Good.Ideas.
I have often been and am in the position to speak with parents who have a very adversarial attitude toward school personnel. My counsel is usually along the lines of getting more with sugar than vinegar. Helping them see the side of the teachers and administrators.
JoyMama's work is really common for any and all parents who invest in their children. I think it increases her chances to influence the school personnel in decisions regarding Joy. But no guarantee.
If you look at it as JoyParents' preferences being deserved or earned by JoyMama's volunteer time, it is likely no one will agree with how much was earned. Truly, it is not that simple. (ARatM please see my post on Jan 2 - also showing what my SIL gave me.)
Earning my family name today, and giving Tim a run for his money. (You were warned, Tim.)
JM, I would rant with you in chorus on individualizing progression to K. I might lower the octave a bit by saying K should not be full-day. Hopefully, we would still be harmony.
I spent HOURS with a local Mom last spring preparing for an IEP meeting where she wanted a one-year extension of K-preK integration for her daughter, turning 6, and not wanting to go to 1st grade. They gave her the placement she wanted, but she has still not been happy this school year.
At this point, I remember why I keep to medical and insurance issues. (Perhaps you saw my comment on 5mfsn about services in PA?) Maybe I can get to blogging on special education next year.
(Nice embroidery, JM!)
BRatK
ARatM - "necessary" is an interesting word. JD and I were talking last night about how we'll never know how "necessary" our efforts are, because we never intend to see the control-situation (i.e. what would happen if we did the bare minimum). Even then, as JD points out, we've got certain advantages just in who we are, even in first impressions as we walk through the door -- I guess even walking through the door is something not every parent does, come to think of it!
We've definitely shared your thought about families that aren't in the position to connect and advocate the way we do. Really that's true for kids in school whatever their needs, isn't it? I mean, Rose gets advantages too from our connection with her teachers, and how we support her education from home, yada yada.
Glad you like the hat!!
Therextras/BRatK - my religious tradition has what is perhaps an unusual historical emphasis on the dangers of pride; I was being partly tongue-in-cheek, but partly have a built-in cultural hesitancy about tooting my own horn. Wasn't thinking about the gossip thing at all! Sorry I didn't respond to that, by the way -- I meant to, and my response was going to be in the immortal words of the girls from Hee Haw: "Oh, you'll never hear one of us repeatin' gossip, so you better be sure and listen close the first time!"
I agree about the sugar and vinegar. Not that we aren't prepared to haul out the vinegar when necessary.
My upcoming rant is more aimed at the restrictions that currently exist in the structure of Joy's intensive-autism program. Haven't really grappled with the issue of full- vs half-day kindergarten, especially since a) Rose was plenty ready for full day, and b) half-day would have presented some sticky childcare issues. Our community is actually exploring 4-yr-old kindergarten...
Thanks for the pat on the back!
Hey Joy thanks for the post on my blog.
Keep on fighting for services.
As educated advocates we are also helping those who are less fortunate in the long run. For example, ABA was going to turn our kid into a robot. Sensory Integration was a fad that any kid would enjoy, but won't really make a difference... Now SI is given w/o asking and ABA is much easier to get.
One bit of IEP advice, make sure there are no surprises going into the IEP. Let the admin/staff know well ahead of time you want to wait another year on Joy. This has helped us tons! ;-)
Atta girl indeed lady .. good will goes so far and you have no doubt laid a wonderful foundaiton for joy when she gets to kindergarten (whenevbr you all ddecide that should happen)
I always appreciate your advice. I gotta tell you, 15 min before EVERY home therapy visit I'm trying to clean, clean, clean b/c I'm thinking about your "Favorite Place" post!
We always bring a (really cute) picture of Rhema to IEP mtgs. as well. For the very first IEP mtg, I actually created a little "Rhema Brochure" for each team member. It had her picture, (in condensed version) her strengths and some of our vision and goals for her.
I left out a word - mandatory - as in mandatory full-day kindergarten. I think K went this way precisely because of the shift of more children into childcare, so, might as well leave 'em in school - vs. 5-y/o children NEED to be in school all day. All-day K is now culturally common, not questioned.
But - can't you just say, Joy will attend K only 1/2-day if you choose, as parent?
Re-reading your post...so, Joy does not attend preschool for children with special needs? Very few parents do not take sn preschool, and I think everyone must be offered under IDEA. No?
Anyway, if '4 y/o K' becomes common, culturally or mandated, I'm opposed. From a child development perspective, homes and families better meet the needs for most children at this age.
I get the concerns for children in families in poverty. Mandating all children in order to sweep those children into the system earlier...I choose not to continue this into a discussion of Headstart.
Bleg for a new post. BRatK
Bonnnie - good point about no surprises. That's an important thing to remember.
Rhemashope - glad that my words are parlaying into actions, but I sure didn't mean that post to make anyone pressure themselves! If it makes you feel frantic you may want to reconsider -- myself, I try to use the "favorite place" concept as a gentle nudge to do things I probably should be doing anyway. But more pressure is something that most of us don't need! :-) The Rhema-brochure is a great idea. We didn't combine the photo and the strengths/visions text, but we definitely came with a document outlining those too.
BRatK - At our school district, the pendulum apparently does some swinging between whether classroom-based SN preschool or itinerant therapy is the option they push. Both are available, and we chose to continue with the itinerant model we'd had with Birth-to-Three. A major factor in that decision was Lynda the daycare Wonder Woman, whose setup has quite a bit in common with a special-needs preschool (except that it's mixed abilities and ages). Plus that way I get the benefit of learning from the therapists during the days they come to our home (last year we sent the therapists half to home, half to daycare). The package from the school district gave us double the therapist hours that we'd had with Birth to Three. This year, with the intensive autism hours, we actually had to accept only half of the school district's offer. But I'm about to start posting about the autism therapy. Like, in my next post.
We can continue the K/Headstart discussion over at Therextras if you choose to take it up there!
About the time when it snows in Brownsville, Texas again - that's when I will post on Headstart issues. That should give me plenty of time .... hehe.
I am supportive of parents having the kinds of choices you had for Joy during this past school year (emphasis on my lack of support for mandated rules.) What if you had not had the options you were given?
I think there is too much 'fight' in the vernacular of the parents in their approach to schools and special ed. (battle, warrior, tsch.) While it is often effective to haul out the vinegar - I've been watching this for 30 years now - the schools have learned to anticipate vinegar, too.
Frankly, the vinegar slinging has escalated to a level of a frat house food fight and is just as ridiculous. Re-read my previous comments (2 on this post alone - oh, my!) and you will see I am consistent in supporting professional and adult approaches to IEP decisions. (Over, get what I want at all costs.) Ahem. BRatK
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