Sunday, September 29, 2013

Another Kindergarten Update - Time for Compromise

If you haven't read the past posts here are the links so you can understand the background to this post:

1st day of Kindy

Kindergarten Update - Frustrated

As soon as I started to suspect that Longvida Curcumin may be responsible for K's defiant behaviour I immediately took her off of it.  Within in a few days I started to notice a return to her usual behaviour - Whew!!!! so glad to have my same old pleasant kid back!  I was about to rip my hair our for a while!

In the meantime, we were already going into the 3rd week at school & the teacher, in light of K's defiant behaviour, was becoming very concerned. One of the other problems they have had twice in these first few weeks is K being a little too independent.  One warm afternoon when the kids were playing on the playground K was too warm & went inside the school & sat inside the door to cool off.  While that was a reasonable choice, she didn't tell the teacher first.  This has never been an issue in preschool but I think with the number of kids the teacher is busier so K just didn't bother. It could also be that this summer we really didn't expect K to check in with us much at all.  If she wanted to go outside or anywhere in the house she had the freedom to just do it so it could be just a return to the rules/structure again. This sort of thing has happened twice now at school & while we have dealt with it now, I can understand how they can't feel certain that it won't happen again.  The cut off for getting coding in place is the end of September & while I'm certain the K is back to herself & I did explain the situation I can't help but completely understand their concerns.  I'm so frustrated at the timing of this situation but feel I need to compromise.

One of the biggest reasons we were not coding K was so that she could get local speech therapy services.  This is the only therapy that I want the school to provide for K.  Her neurodevelopmental (ND)program does cover speech but I think this skill is so important that I feel the more practice she has the better. Kids who are coded have a consult type system with someone who travels from a few hours away & I really want someone local so I can be more involved & I think there is also a little more accountability.  Not only that, they would see her much more often & therefore would be able to do a much better job assessing her speech. The other huge reason for wanting local services is that the SLP that K would see is familiar with ND programs!  I never thought I'd find that in a mainstream therapist! Her daughter was greatly helped by a ND program several years ago so she is totally on board & interested in K's program.

So, K will end up being coded this year but they are able to get an exception & she can have the local speech services that we want for her.   I do want the 1:1 for speech so she will be pulled out for this but that is the only time she will not be in the classroom - not for PT or OT which she will likely not get anyways.  Some of the funding  received will be used for an aide for a portion of the day - I'm thinking it will be for a couple of hours in the afternoon but am not completely sure. The aide is to act as a classroom aide & only give K the minimal amount assistance when necessary. She will be there more as an extra set of eyes so that when the current classroom aide is working with one of several other kids who need speech the teacher will have help because of the number of kids in the room.

As an aside, K's fine motor skills were on par until the last year or so.  While a tad on the messy side, her printing can usually be read. K's program covers fine motor really well so if they end up doing any OT I don't want it during class time as that is so well covered at home. I do think that it may be helpful if they learn some ideas to use with the whole class but don't want OT to interfere with K's classroom time.

One thing that I am requesting is a vision assessment.  A vision consultant will be coming out from the CNIB to assess K's vision & give suggestions.  This will likely be much more helpful for myself as print in kindergarten tends to be very large anyways.  Even if some things are written in a smaller font, they won't be long paragraphs & K can manage to read even very small print in small amounts.

Monday, September 23, 2013

Kindergarten Update - Frustrated!

Well, so far after only 4 days of kindy I'm feeling very frustrated & very confused.

For the past two weeks K has been very defiant & uncooperative & of course that is carrying over to school. Don't get me wrong, she is loving school & I don't think the behaviour is related to school but the timing sure is horrible!

Over the summer we have been working really hard with K on her behaviour.  As the youngest of 4 kids it seems like there was always someone there to help her comply with any directions we gave her & while her big sisters were trying to be helpful it wasn't helping K to independently follow directions so that was our main goal over the summer & I was really seeing her blossom & become much more responsible. After such progress it's very frustrating to see such a huge regression in behaviour especially at a time that I really want her to behave her best. 

The other thing that I noticed is that she seems to be getting help with tasks that are very basic.  The other day when I arrived a few minutes before the end of the day I was able to sit in on the class for about fifteen minutes.  I noticed that after the kids were done painting the classroom aide helped K wash her hands. I also was quite surprised when at the end of the day K expected me to help her change her shoes.  WTH??!!  These are basic tasks that she has been doing for 1/2 of her life already!

So tomorrow I am having a meeting with the teacher & after that I hope K will have a little wake up call about being a whole lot more independent! We will also discuss her behaviour & hopefully come up with some solutions.

As for the grouchy behaviour I'm hoping a change in supplements will help. We ran out of Longvida curcumin this summer & coincidently received our order a few days before school started.  K has had trouble with grouchy behaviour in the past when on the full dose so I have been giving her a half dose which she has always tolerated well. I'm wondering if the 1/2 dose is now too much for her too.  It is such a great supp for her speech - the only supp that has ever really made much of a difference plus it is so great for brain health that I don't want to remove it completely from her diet but for now I've taken her of all supps just to make sure none of them are causing her behaviour problems.

Wish me luck tomorrow & cross your fingers, or maybe even say a little prayer that we get to the bottom of this soon!

Friday, September 13, 2013

Today's the day!

5+ years of program & today is the day. Miss K headed our the door for kindergarten. Registered as a typical student with all the same expectations that come with it. 

She was so excited this morning. She rushed through breakfast, took her lunch kit from the fridge & headed for the door a full 1/2, hour before it was time to go. By the time we arrived she was still chomping at the bit & announced that that she was heading to school by herself "Bye Mom!"
Of course I followed her into the school but I allowed her to head out in front & go through her morning routine by herself. She has only been at this school a few times before at her sisters sports activities but did go to the kindergarten orientation this spring so she knew just where to go & what to do. Once inside the classroom she wrote her name & sat down on the carpet, read books & visited with 2 of her preschool buddies until circle time started.  The other moms & I left that point but everything seemed to be going very well.

K was tired but so excited after school & had lots to tell me about her first day at school. According to the classroom aide who I stalked  accidentally bumped into in the grocery store later, K did very well. There was one incident where she refused to do something but when she was asked a 2nd time she immediately complied. 

Whew! I know I should expect the best but I still had some nagging worries.

Today seemed like such a big day for so many reasons.  For over 5 years we have worked to foster independence & teach the skills necessary to succeed. It have often felt like I was pushing her to be independent while fighting the urge to hold her back because sometimes I'd like time to stand still & all of my kids to stay little girls.  I know I would have been this way with a typical child in many ways yet I also know that if she were a typical child I'd have worried less & paid less attention to details.  Details like the cute yet easy to get on shoes she wore - my friends typical child has lace up shoes that she needs help with but I really felt that K needed to be able to do this by herself.  Details like the containers in her lunch that she can open herself. She doesn't usually have trouble with this sort of thing but I looked things over just in case. I'd love to let her be my baby much longer but I also know that my role as her Mom is to give her the skills necessary to be independent.

I made sure I kept very busy during the day. One of the other moms & I went for coffee before heading home.  I have a small appointment based business which I run from our farm so I overbooked myself just a little so I'd have to work at full speed all day ;).  It kept my mind off of K & her first day of school although it wasn't as tough as I expected it to be anyways.  As this last year went by & we slowly started approach the new school year I realized just how ready she was & that is one of the main thoughts I had when I did have a moment to ponder during the day.

The other thought I had was "This is it!"  This is one of the big moments we've been preparing for.  All those miles we've jogged & crept & crawled. The thousands of flashcards we've flashed & sentence strips & books we've printed & laminated & read to each other. The hours of digit spans (love them, honest ;) All of the things she learned from her 3 big sister, her Daddy & I.  Today was the day when K was able to go out into the world on her own, make her own decisions & prove to the world that she is a perfectly capable little kindergarten student.

.....................& today, she rocked it!

All in all it was a very good first day!

Wednesday, September 4, 2013

2nd phase cognition drug trial - footnote added

Like I've said in the past, I won't be the first one standing in kind if a drug like this reaches the market for people with DS but I think it's good to keep an eye on these things.

Just a footnote as I had question from a reader:

We are not planning to be first in line for any sort of "cure" or cognitive boosting meds. I would hope that the discovery of a drug would lead to the discovery of a parallel type of natural treatment. I'm not saying that we would never consider a drug type treatment either butvwecavoid all types of medications whenever possible so I'd have to be assured by lots of testing that the side effects are worth the benefits. So far the results of K's neurodevelopmental program far outweigh any supplements I've heard of. Like most things in life, the benefits ilof hard work outweigh the quick fix.