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Best option for learning [Down syndrome, preschool]

Posted Jul 15 2010 12:20pm

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…

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