31 for 21: Braska’s 2011-2012 IEP, part 1

IEPs can be scary.  Some people dread them.  Some people just ignore them.  (I’ve been shocked at the stories I’ve heard at our school and in our area about parents who don’t even attend, or who just sit and listen and say, “Whatever” in a non-caring way.) 

I don’t dread them or ignore them.  I view them as an important part of the process of educating Braska and getting the best services for her that we can.

There are a lot of parts of the IEP, and this isn’t really meant to be a technical lesson on that process.  Though if you have questions, don’t hesitate to ask… I may just refer you to pros in your area. There are great training organizations out there who can equip you very well.  Around here that’s MPACT, and I’ve been to several of their workshops.

But feel free to chime in with experiences or tips or your favorite parts of the process!

The first part of the meeting is always the most important part: FOOD!  I never show up to an IEP meeting of any kind without some kind of goodies.  If in a hurry, it could be M&Ms or trail mix, but I generally bake, since my meetings are usually at 9am.  I’ve done coffee cake, donuts, cinnamon rolls, pumpkin bread, and others.  Sometimes I’ve even taken little pairs of wrapped cookies so they can take and have after lunch, too.  Some meetings I’ve taken drinks, others I’ve skipped that part.

This time, with sick tots the days leading up to the meeting, I went the easy route… Great Harvest Bread Company and QT.  I picked up a couple kinds of fall breads, Cranberry Almond and Cinnamon Chip, as well as some blueberry cream cheese scones.  Then I hit QT on the way and got 4 large cappuccinos in different flavors, with extra cups so we could share them.  These are always a hit! 

All in all, super easy, not expensive, and the impact is huge.  These team members do a lot of IEP meetings, they work with kids all day, and to sit in a meeting with something yummy to nibble on and a pick-me-up drink is a treat to them.  They are always excited, even though my team knows there will be goodies before they get there.  Julie and I have developed a bit of a reputation at our school.  And we’re trying to teach the other parents we come in contact with how big a difference this can make to the comfortable feeling in the room.  It puts everyone at ease and makes the whole process less business and more conversation, which tends to benefit all involved.

Once the food is all arranged and people are settled in, we generally start with the Present Level element.  This just states where Braska is currently in a variety of categories.  I like that they start with her strengths, then talk about her areas of weakness (none of which are a surprise, of course) and then we go over each of her therapy areas to talk about her current abilities.

Some snippets from Braska’s Present Level:
Strengths
~Letter and number recognition.
~Sight word identification
~Happy and enjoys being around peers and teachers
~Greets adults by name
~Easily adapts to changes in her day

Weaknesses
~Difficulty in visual motor interferes with task completion and fine motor skill development.
~Delays in sensory processing, motor planning, and self-help skills interfere with Nebraska’s feeding and drinking tasks during snack time.
~Decreased receptive language skills affect her ability to follow directions with 2 or more components.

I’ll continue with more of the Present Level next…

What’s your IEP experience? Good? Bad? Dreading the next one? Why?

multitask-a-blogging

This morning we got up a little late after some much needed extra sleep. After a super quick breakfast for the girls, we jumped in the car for school. We hurried in to the school, dropped Braska and hurried back to the van. Only to find that I set my keys down in Braska's cubby.

Back to the classroom and back to the car. Kinlee and I came to the Y for a workout since I don't work on Wednesday mornings due to feeding therapy at 11:15. So now KiKi is at Y school and I am on the bike pedaling while blogging about our crazy schedule lately. Loving my "new" super cool Droid for this and other reasons. Not loving the short battery life but I will adjust. Happily.

When I finish here shortly, we will head back across the highway to the school for feeding therapy and then home. With a likely stop by for a QT visit with our buds. Tonight it is back to training for me. More CPR and then first aid and O2. Done at 10 pm. Then likely a collapse for just a few minutes!

Life is nuts right now but I'm not regretting our decisions yet. Just adjusting with a smile whenever possible. Flexibility is SO huge. If you don't have some, get on it!!! Life will be more enjoyable!

Happy Wednesday friends!

Answering school questions

Several of you have asked questions in comments or emails, so I’ll elaborate a bit more about the school situation…

As far as why she was put in the afternoon class and if we had a say…  There was no request process or any kind of communication from the school until we received the call to tell us where she had been assigned.  We were told if we had any issues with it to call someone, and that’s what I did.  The person apparently in control of these things is who told me that there wouldn’t be any “shuffling” happening.  Obviously, had I been given the chance to put my 2 cents in, I’d have been very clear with this info about her needs at that time.  It never dawned on me they would choose to put her in an afternoon class.  It seems so very obvious to me that a child who has been noted as having focus issues in the classroom anyway would be assigned to start school at the least fresh time of the day.  I’m glad they wanted to put us in Miss N’s class, and if that was a special concession that I didn’t know about, I do appreciate the thought.  But Braska’s ability to perform and benefit from school is still primary.

(I’ll add in here that Jack is in the same boat as Braska. They were assigned to the same class, which we like, with the teacher we like, but not at a time that will work for either of them.  Julie may talk more about that on her blog at some point.  She is also quite unhappy with the situation, but she’s on vacation right now in the Sunshine State, so not sure when she’ll be blogging.)

We were told that “not all kids can go in the morning,” that they must have afternoon classes, so some kids have to go then.  I get that. But I have now talked to three other families who have kids at our school, kids with DS, and these kids are older than Jack and Braska by at least 6 months, and they are all in morning classes.  I was told by the school rep that they put us in with the teacher we liked, and  I’m guessing that this is why they did the afternoon class. (Her morning class is a “young 3’s” class…the kids who have just turned 3 over the summer. And that’s where the kids who turn 3 during the year go when they start. There are many of these “young 3’s” classes. We would have been FINE with them being in that class.)  I’ll state again…we DO like that teacher, and I had hoped Braska would have her again, but I can’t do the afternoon class even for that.

Because there was no communication or even a chance for us to preemptively let them know that afternoon was NOT ok, it would seem that there would be a back-up plan if the assignments simply don’t work for the child.  But it does not appear to be so currently.

I’ll also state again that part of me feels I need to go ahead and take steps to get her moved to the morning, if only to make sure that this process is corrected, that it’s not left as ok as is.  But for Braska, NOT being there, from the health standpoint, may well be better, so right now I’ll leave the battle to Julie.  She’s better for the job anyway!

It’s also been mentioned that Braska could nap before or after school…  After wouldn’t be an option, because she’d still be totally useless while AT school because she would be tired. And napping after 4:30pm, when we’d get home, would be just too close to bedtime.  And before, taking feeding time into consideration for her required schedule, would mean that she’d be needing to go down for her nap before 11 am.  And that’s just not going to work.  She’s still in her “go mode” at that point.  She hits her wall between 12:30 and 1pm, so she’s generally snoozing solid by 1:15pm on most days.

Regarding the question of if we have other schools to choose from… Nope.  That’s the easy answer.  Our school district contracts with this specialized private school for Early Childhood Special Ed (ECSE). Some call it a developmental preschool.  The classes are generally close to 50/50 kids with IEPs and kids without.  So everyone in our district who qualifies for ECSE goes to this school.  Another neighboring district has the same situation with the same school.  The third district in our area has their own ECSE building/program. 

Clearly, this is not the way I’d have preferred it.  But we’re going to move forward feeling comfortable that this is the right choice for what we know and have access to right now.  All this with the knowledge that things can change quickly, as we’ve learned once again.  But for now, we have a plan and we’re ok with it.

Best option for learning

Well, well, well… it’s been a very interesting couple of days.

Thanks to all of you who have given input on the afternoon school versus nap situation.  I’ve really appreciated all the different perspectives and it’s been good to think through a variety of things.

Before I give you the latest, I’ll answer a couple of questions…

Bedtimes: The girls go to bed between 8 and 8:30p usually closer to the 8:30p mark.  It’s rarely much later than 8:30p unless we’ve been away from home for the evening for some reason. 

One thing to consider regarding bedtimes with Braska is that she is tube fed for the majority of her nutrition, and her intake is limited to the volume she can hold at any one feeding.  We don’t use a pump, so she just gets bolus gravity feeds 4 times a day in addition to whatever she might eat orally.  But she ALWAYS needs a feeding right before bed to get her calories and fluids in for the day.  She simply cannot tolerate all her required amounts in volumes that would allow us to cut the bedtime feeding yet.  And because we have to allow at least 4 hours between feedings in order that she can keep it down, this affects when she can go to bed.  We try to work it out so that her last feeding is at 8pm, but if the schedule gets off at any point in the day due to errands or just life in general, then it can sometimes be a little later.  There’s just not hardly any way to make her last feed before 8pm. The 8am 12n 4pm and 8pm schedule is the one that fits her best.  So we can’t really put her to bed at 7pm, for instance.

I hope that makes sense.  We just have some additional restraints on our routine than most.

School options: I had hoped I could talk with the school, explain our situation with naps, illness, and focus issues in the afternoon, and they would be willing to make some adjustments, but that wasn’t the case. 

So here is where we are right now… according to a representative from her school, she may attend the afternoon class or no class.  I was told that they are not willing to move her to a morning class and that they ARE offering an appropriate option for her.  Clearly, I disagreed and told them so. Politely but firmly. 

I’ve decided that the afternoon class is not an option at all.  After much deliberation and prayer and consulting others in like situations, I’ve decided, and M agrees, that she would gain no benefit from the afternoon class and would only be in a position for negative effects of the change—in reduced sleep, inability to perform well at all during that time period, and increased concern for illness, which has already been excessive since she started in November.

Beyond that decision, I’m still in limbo.  The representative from the school couldn’t offer me any info about where to go next.  I tried to contact the district (our district contracts with this specialized school for Early Childhood Special Education) but I’ve not received a call back. They aren’t in every day at this point, apparently.  I’m guessing I’ll need to reconvene the IEP team for a meeting and set up new placement for itinerant services.  This will mean that we will receive the therapies but no class time.  I’m hopeful that they will not make that difficult to achieve. 

My feeling right now is of disappointment.  It’s not anger, though I’ve been close.  I’m just so disappointed in this school.  We chose to live where we do, precisely where we do, in order to be in the area that utilizes that school for ECSE.  We heard many good things, and we have experienced many good things since we began back when she was 2 and going 1 morning a week.  Almost everyone we’ve dealt with has been wonderful, so helpful, very nice, and I count many of them as friends.  I’m disappointed because we have now had an impasse at a point that doesn’t seem that difficult to resolve.  At least to me.  But I’m just the mom.  I really believed they would be more willing to be INDIVIDUALIZED in their approach.

I kept being told that they can’t “shuffle kids around” (to which I responded that I’m not interested in “kids” I’m interested in my kid—one kid—and at 24 lbs and 3 years old she is not that hard to “shuffle around”) and that the schedules are set and that they have to have SOME classes in the afternoon, and kids will adjust.  Well, of course they will adjust.  But I don’t think I want or need Braska to adjust to this at this moment.  It’s not necessary. She is 3.  If she wants to nap and she needs to nap, then a nap she’ll get!

Braska’s teacher (last year and assigned for the coming year) is great. I’ve talked with her, and she is very understanding, but she’s not in a position to bring about changes in this situation.  I had offered the option to the representative at the school to have Braska be in her teacher’s morning class, the “early 3’s” which is the age that she was with this last year.  She would still be “behind” them, so the peer modeling element would be present.  But nope. No dice.

I could probably raise a real mess at the school and with the district, get letters from everywhere, go right up the chain of command to get her in a morning class.  I’m quite sure I could do it if I wanted to.  But in the last couple of days, I’ve learned I don’t want to. (Though I have considered taking it to the top just to pave a way for some other family who will come after us…but I don’t know if I have that energy right now.)  Braska missed SO much school this past year, and we would most likely be looking at the same thing again, because her habit of having her hands in her mouth so much is still continuing, no matter what intervention we try, and as long as she is doing that, she will continue to get everything that comes into the room.  Why go through all the hassle for this and then just have her miss every other week again?  Why deal with all the illness as it trickles down through all four of us and even causes M to miss work?  It’s not worth that. 

I say this alot—She is 3.  There is time for school.  She will go to school, I have no doubt about that at all.  But all signs show me that it’s not the best choice right now.

So it looks like, at this point, Braska will not be in school this fall. I hope we can work out the itinerant services for therapies, but I won’t send her to school JUST for that if it means compromising on all the rest of my issues.  I’ve talked with the pediatrician about taking a break, and maybe that’s what we’ll do.  Of course, we’ll continue to work on the things we always work on.  

Maybe we’ll only take off the first semester and then revisit the situation.  But for now, that’s where we are.  I am a little nervous, but I’m glad for some clear direction.  She will miss going to school…she really does love it.  But this is for the best, and the BEST learning option, in good health, is what I’m interested in right now.

Wow. What a difference a few days can make…

The germ count

As of right now, we are healthy.  That’s very nice. The girls are well—or as well as Braska can be with what is apparently allergies at this time of year, so still snot persists—and they are nearing their “normal” demeanors again. 

Right at the moment I can’t remember what I’ve updated about on here and what I haven’t and I have very limited time to throw some info up here, so I won’t go hunt it down. If this is a repeat, please pardon me.

Braska is due for tubes in her ears. We learned this at the end of February and were not at all surprised.  Though she made it her first three years of life with not a single ear infection, she had at least 4 in the first 3 months of school, so tubes are in order.  The ENT recommended that we get a sleep study first to see if we would just do tonsils, adenoids, and tubes all in one anesthesia trip. Sounds good to me. The sleep study was at the end of March. (Still no results…grrr. That’s another story. I’m going to be making another in a long string of calls this morning.)

To my chagrin, the ENT either has way too many patients or way too little time scheduled for OR procedures, because suddenly, when we wanted to schedule for a surgery date, they gave us June 2.  Not acceptable.  So we began to check out some options, including restarting with another ENT and still getting the whole process done in less time. But in the nick of time, I was told that there was a cancellation and we could have the slot, the first week of May.  I took it, and we resigned to the fact that we’d have to wait til then for the procedure.

Due to our string of ear infections, strep, hand/foot/mouth disease, and random other fun germies, our pediatrician recommended this week that we keep Braska out of school until her surgery, just to be SURE that we don’t have to postpone due to another little illness.  If we have to reschedule, it would probably be December before we get in, by my calculations.

Therefore, this week I’ve been talking to lots of people at her school, the district coordinator, therapists, etc.  We’re trying to work out a way for her to go to school for therapy only and in environments that we can control as far as exposure/cleanliness.  So I would take her up for therapy services at regular times for the next few weeks.  At this point, we have speech on the calendar, but I’m waiting on the rest.  OT/feeding is my primary concern, since Braska’s been making progress with Sue, so it’s the one I’ll work the hardest for. (Excuse me…for which I’ll work the hardest.   Good grammar can be so formal.)

We’re hanging out at home in the meantime.  The girls are playing fairly well, though they sure do get on each others nerves lately, and mine, and Belle’s, and vice versa in all cases…close quarters we have here, and when we’re all trying to accomplish something different on our personal agendas, it gets heated.  We’ve made a few trips to the library, with limited handling of books.  Braska has asked almost daily to “go school today?” and “fun at Jack’s house!” (She actually says it like that…there’s nothing but fun at Jack’s house apparently!)

For now we’ll take it easy, enjoy the nice weather, though we can’t really use the beloved attic fan like we would prefer since Miss Snotty only gets worse with all the crazy high pollen lately.  We’ve had her on Claritin which didn’t seem to do anything at all.  We now have her on Zyrtec, but it appears to make her really crazy inside and she acts out strangely.  So I’m not really sure we’ll continue.  She hasn’t had it last night or today, so we’ll see how she does.

That’s where we are. Not all that bad, not all that fun. But I’ll take it over antibiotics and coughing and fevers and whining (more than usual, on Kinlee’s part) any day.

I now return you to your regularly scheduled day. Thanks for tuning in.