Stringing letters [Down syndrome, fine motor skills, OT]

My teachers at school are just the best. I like all of them so much. And it’s so much fun to see what new things we’re going to do everyday.

Miss J had a fun new thing for me to try a few weeks ago.  They are LETTERS! My favorite thing in the world!  Miss J helps me learn how to use my hands better and make them stronger, which is really hard for me.  But these fun new letters are so great I don’t even mind doing them for practice.

Then the coolest thing happened…. I got home and there were MORE letter beads, just like my ones at school!  It was like magic! Somebody special loves me a whole lot, I think!


KiKi plays with them too, but they are my special toy to practice with.  The first day we had them at home, Mommy let me play with them some after KiKi went to nap.    Here’s a little movie for you to see…  check out my skills!

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Mommy note:   Neat things to note in this clip…
~~Fine motor is a VERY difficult thing for Braska.  She has only been in regular fine motor focused therapy for about a year, because prior to that most of her OT time was focused on feeding.  It is one of the areas that she shows the most delay. But we’re not bothered by that.  She’s doing great! She now has two OTs at school (the best two, in my opinion!), one for feeding and one for fine motor. (They are a GREAT team and overlap a lot in each area.)
~~ Suddenly every letter was her “fav’rit”. As in, “Oh, the letter U, my fav’rit!”
~~Most of the letters you will hear her say “makes the ___ sound.”  This is something we’re working on, mostly because Kinlee is obsessed with what everything starts with and what sound all the letters make.
~~You’ll notice phrases “I better go get it” and “I do it again” and others.

31 for 21: IEP 2010, Part 1 [Down syndrome, disability, IEP, special education]

Today was IEP day.  (Individualized Education Plan—All students involved in special education have one of these.)  We moved Braska’s up a little earlier than her birthday in late November because I like it a little closer to the beginning of the school year.  It just makes more sense to me to be done with the new team soon after school starts.  So this year we’re in late October, next year maybe we’ll hit late September.  That’s probably a good time… about 6 weeks into the school year.

Anyway, after a busy day yesterday, which I’ll have to tell you about another day, I tackled the important parts of IEP prep last night.

The baking.

Yes, that’s a very high priority on my list of IEP must-haves.  In my opinion, no parent should EVER go to an IEP meeting empty-handed.  Taking goodies, be it  pastries,  muffins, or coffee cake for a morning meeting or M&M’s, cookies, or popcorn for an afternoon meeting, it’s a huge tool in making the meeting less intimidating for all involved.  It seems to allow people to let down their guard and work more as a team, as it should be.

I remember last year, when we did our first IEP process at Braska’s 3-year-old transition time, I was shocked to find that we (both Julie and I) were the first to bring food to an IEP meeting at our school.  And this is a developmental preschool… with more than half of the students having IEPs!!  I couldn’t believe it!   In all the talk on forums and blogs and DS message boards, taking brownies or goodies to IEP meetings seemed like the norm.  Everyone always said, “Don’t forget the brownies!” when the were discussing someone’s first IEP experience. 

So when I entered last year, in our first of two meetings—we did the EDM (eligibility determination meeting) and IEP meetings separately per my request—with my coffee cake, pumpkin bread, orange juice and milk, they were stunned.  I cannot tell you how excited these ladies were. It was so funny to see them talking about how they needed to find a reason to have IEP meetings each month for Braska.  Julie got a similar response when she had her meetings, just a few weeks before mine.  For my second meeting, a couple weeks after the first, I took more baked yummies and also took little bow-tied bundles of cookies for each person to take and enjoy later.

For MONTHS, and that’s not exaggerating, we would see people in the hall one or two times a week who were NOT at our IEP meetings but would say, “I hear you guys do some great baking!”  or “Can I be on your IEP team next year?  You bring food!”  It continues to amaze us how big a deal this was to our therapists, coordinators, and teachers.

I do it because it helps the meeting feel more informal.  But I also do it, and I tell them when I’m there, because I appreciate what they are doing for my daughter, that they give their best to teaching and treating her.  It’s my way of thanking them, and showing them a small little bit of pampering for a couple hours once a year.  That’s doable!  And the response is so fun, too.  How can you not want to do something nice for people that they tell others about and keep smiling about for months?!?  And it takes very little time, effort, or money.  Win-Win!

So this morning, I gathered up my muffins—chocolate chip, banana nut, and blueberry—and dropped the girls (and a few muffins, of course) off at Julie’s before the meeting.  Truthfully, I practically threw the girls into her house because I was running late!  Then I headed to QT to pick up a few donuts, for variety and color, and I also got 4 cups of 3 different kinds of cappuccino to take as well. (Caramel macchiato, French vanilla, and pumpkin spice)

I had the drinks in a cardboard drink holder, but as I turned into the school parking lot, I changed direction too quickly, and the drink holder went right over, with all 4 cups of hot drink.  I thought I was going to lose it…but I said—out LOUD, mind you—“This will NOT get to me today!”  I parked, picked up the cups, which had about half their contents left in them, and left the rest of the mess in the floor board of the van. 

As I walked into the school with my binder under the container of muffins, the donuts on top of the muffins and the drinks on top of the donut box, I passed a school staff member I don’t know.  She looked at me and said, “You’re the one!  You’re the one who brings food!  I heard today was your IEP!”  This cracked me up.  Before I even got there, members of my team were talking about how they were anticipating what I’d bring.  Awesome.

The team was very excited to see all the goodies.  The cappuccinos were a HUGE hit, even though there was less than originally planned, and everyone had plenty of yummies while we talked about Braska and her progress.

As I left, there were a few muffins and donuts left over.  I went to the classroom of Braska’s teacher last year, Miss N, and dropped off the donut holes and a couple muffins.  She’s pregnant, so she needs plenty of things to keep her day happy and her tummy full! (I took her leftover birthday cake last week, since I didn’t trust myself if I kept it at home.)  Then I went to the front office and left a couple muffins in the mailbox for our speech therapist from last year.  Both these ladies have now become friends, girls I just adore, and it’s fun to leave them a treat since they’re not officially on our team anymore.

So take the time, think ahead just a tad, and take something nice to share with your gang next time you have an IEP.  It makes a great impression, and how can helping your child’s caregivers feel appreciated be a bad thing??

Coming soon… the details about the IEP meeting.  Amazing!

(Oh, and if you have any questions about any of this IEP stuff, don’t hesitate to ask…)

Braska: School picture day

A few weeks ago, it was picture day at school.  So we picked out a cute shirt that Grandma C got me in Montana and did my hair with my favorite big bow that my Aunt Karol gave me.  We like this shirt because it has tulips, and there’s 3 of them.  Tulips are my special flower.  I like when they grow in my yard, but for now I have to just have them on my shirt.

I know that I’m supposed to smile when Mommy wants pictures, but sometimes I just wanna get on with going to school!


Then sometimes I just get silly…

 

Mommy says she hopes the pictures from school were better and I behaved for the lady with the camera there. 

Shhhhh…It’s a secret……… maybe I’ll show you soon.

Mommy report: Skill surprises

I’m a horrible blogger lately.  No excuses except life. 

BUT--

There’s a couple things I just don’t want to forget that have happened lately relating to Braska’s development.

• We’re just beginning work on potty training.  I won’t go into great detail because that’s not really me in an area like this.  Suffice it to say that both girls are loving the process, and even though they’ve been totally fine to go for quite some time now, especially Braska, they’re picking up pretty quickly on the routine.  We’re not in “full training mode” or anything, but the preliminary work is going well.
• When I drop Braska off at school in the morning, she is to take her backpack to her cubby and then we go wash her hands and find her nametag.  The other morning she took her backpack (which is actually too big for her to wear…causes balance issues even though it’s a mini-backpack) and carried it right to her cubby.  Leaned over and patted her name on the bottom of it and said, “Braska’s cubby.”  Nice!  We know that she can recognize her name, but it’s been reinforced a couple times lately and with others besides just me, which is fun.
• She also can do her washing-hands and nametag-finding procedures by herself, too.  I generally help her enough that I don’t realize what all she can do herself.  I stepped back one day, not intentionally, but she didn’t wait for me and continued her morning routine just fine!  She stepped up to the big sink (on her stool), turned on the water, reached for the soap (automatic motion sensor kind…waited appropriately), didn’t quite get it scrubbed all around before it got washed off, but oh well.  She rinsed and turned the water off.  Then she stepped down (with assistance, steps are still very hard) and walked to the paper towel dispenser, pulled the rope 3 times like they’re supposed to (counting loudly “one! two! three!”), tore off the towel, dried her hands and walked to the trash and said, “Throw away!”  She marched her tiny self over to the table and found the correct nametag and said, “Braska’s nametag” and handed it to me to put on her back.  I told Julie that morning that I clearly have been holding her back by helping so much each morning.  She doesn’t need so much!  Amazing!
• Her teacher also told me that she can identify her two friends’ names from her own and will say each of them correctly when shown the names.  (On her “small class” days, two days a week, the class is just two little boys and Braska.)  The teacher held up one name and Braska proclaimed clearly, “Dominic!”  Then they showed the next, and she said, “Braska!”  And then the third one she studied for just a sec and said, “Colter!”  Apparently this has happened more than once and in various name order. I had no idea… 
• We’re preparing for her IEP meeting at the end of October.  Not too much to prep for this time, though. Our team is good, she’s met many goals, and I think we’re in good shape for this next year.
• She’s now good with her letters—upper AND lower case--thanks to Preschool Prep.  She can do her numbers 1-10 on sight and in order.  She can count to 20 consistently.  And she’s got at least 8 shapes down as well.  She’s doing well matching items of the same color, but she still struggles with naming colors appropriately.  She always says *a* color, but it’s not always the *right* color.
• And NO SICKNESS YET!!!  (For Braska, that is. Kinlee’s had it, but Braska’s not caught anything! Woo Hoo!)
• Her feeding is picking up a little, though it’s very slow. She’s just starting to agree to chew on something once or twice, and only if it’s in a pouch (so that pieces aren’t coming out into her mouth, which bothers her greatly).  But with a Ritz cracker, she will bite a piece, sweep the large pieces out of her mouth with her tongue, but she is handling the little pieces and crumbs pretty well. This is a HUGE improvement.
• Still no drinking of any real quantity. No straw success yet.  But she can raise an open cup to her mouth and sometimes get a little.  We only put a tiny bit in or she ends up soaked!  But she’s becoming more cooperative with the work process.  Our feeding therapist/OT is GRRRRRRREAT!

That’s all for now… I’m exhausted from a night of both girls being up numerous times last night.  Not sure what was up, but they really ganged up on me last night.  Hoping for better sleep tonight!!

Me ‘n Jack: New teachers, new room, new friends [Down syndrome, preschool]

Today was the first day of school!  I didn’t get to stay the whole time since I’m not all the way better from surgee yet, but I had a lot of fun while I was there!

 

Me and Jack decided to wear our shirts that he got for us on his trip a few weeks ago.  He came to my house before school so we could take some pictures.

 

“Good morning.”


Braska: “We’re not going in the house. Pictures are outside today. You ready?”


Braska: “Come over here, and we’ll let KiKi in the picture with us.”

Jack: “What if I want to just stand here?”


Girls: “Is he going to sit down?” “I don’t know.” “Does my hair look ok?”


Braska: “What if we kind of sit like this?  It’s what the cool kids do.”


Jack: “Ok, I’m here. What now?”

Girls: “Just wait for Mommy to take the pictures. Do your hands like this.”


Jack: “You want cheese? I’ll give you cheese!”

Braska: “Don’t look now but he is being goofy again. No! Don’t look!”

KiKi: “He’s still pretty cute, though.”


Then we took some more pictures in the hall by our classrooms.  We’re not in the same class this year.  I don’t really like that, but at least he’s right next door.  It was really weird to go to meet new friends without Jack.

”Are we done yet?  It’s almost time for school!”


”Please, God, help me make some fun friends in there.”


”Here’s the plan… if you miss me, just knock on the wall three times and we’ll meet in the hallway.”


”I like my cubby, but seriously… why can’t Jack be in my class with me? Where is he?”


Me and Jack both had good days at school.  Tomorrow I get to stay the whole time because there’s only 3 kids on my small class days.  Then next week I get to go regular all the time!  I like my new teachers and I think my new friends are really nice too.

 

While Kinlee was waiting for me to get done at school, she played on the pirate ship.

 

She went around and around and around and kept going down the slide.


Then she found some great big balls. Almost big as her!


Here’s some little movie of Kinlee playing.  (Grandmas like these kinds of movies.)

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YAY for school!!!

The only constant is change

The girls are home. They were very excited about their time with Grammy and they were excited to see me, which is nice.  They generally don’t seem to care too much if I’m around or not if others that they like are there. 

For those of you following the school saga, there’s another piece of the fun puzzle to add. 

Recap: Miss N was Braska’s teacher last year.  We like her very much.  Braska was assigned to her again this year, but in the afternoon.  That was a no-go with me.  So after the short-lived no-budging policy, they moved Braska to the morning…to Miss N’s class.  YAY! 

And when we thought it was all settled…. the phone rang again.

Miss N called to tell me that she has just accepted a new position within the school to work with the kids getting ready for Kindergarten, and I’m happy for her that she’s glad for the move. But we’ll miss her as B’s teacher.  She assures me that I’ll like Braska’s new teacher, as she was Miss N’s mentor. She sounds like a good fit.  We’ll get to meet her in a couple weeks.

So in summary… I’m SO glad we didn’t cave to the afternoon plan JUST to be with Miss N, since she wouldn’t have been there in the end.  I’m hopeful that things will go well, that Miss A will be just what Braska needs this fall, and that Jack also does great with his teacher in the room next door to Braska’s room, Miss B. 

Ask me if I think this is the final chapter in this interesting story… go ahead. Ask.

The ride continues… [Down syndrome, preschool]

I’m tired, and it’s late, and I had a nice evening so I want to go to bed with that peace to put me to sleep.

But I wanted to share the latest in the school saga.

Remember when I said yesterday that things can change quickly??  Late today the school called, a different contact, one that is more familiar with us and a person I respect for the work she’s done for us before.  She told me that after talking with a very wonderful member of Braska’s team and others at the school, they’ve decided Braska WILL be moved to a morning class.  I don’t know the details yet, who her teacher will be, if it will be an “early 3’s” class or a “3’s” class.  I told her I’d prefer the “early 3’s” option, and she was surprised.  But I feel like that would allow Braska to learn from her classmates, both those with IEPs and those without, and she wouldn’t be quite so much smaller,  possibly. (We’ve had some issues related to this, but I’ll have to talk about that later.)

I’ll know more next week.  We’re still thinking through everything.  But I’m glad that the school was able to make this adjustment.  It’s only right, in my opinion, to offer an option that will allow the child to succeed. I do appreciate their efforts.

Answering school questions [Down syndrome, preschool]

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.

Braska: Last school day, for now [Down syndrome, preschool]

Thursday was a big day for me.  It was the last day of school for a while.  And it was the last day with Miss Natalie and Miss Sue.  They are my favorite teachers, so I wish they could just always go to school with me.

Before school, we took some pictures… you probably figured out by now that Mommy ALWAYS takes pictures. 


Mommy says this is my Sincess Kennedy smile.  It makes her think of my friend Kennedy when I make this cute face.


Then we went to school.  This is my classroom.


When we first get there every day, we have to wash hands. First we turn on the water.

Then we get soap and wash wash wash! I love looking in the mirror, and Mommy tries to get me to look at my hands so I can do a good job.  But it’s way more fun to make silly faces in the mirror!


After we turn the water off, then we get a towel.  We pull on the handle 1, 2, 3, and then we stop.  We tear it off and dry our hands.  Then it goes in the trash.


Then we can get our nametag off the table and go play.  Well, after we match our picture on the board with our name.  But I just like to go play!


When it’s almost time to go home, I get to sit in this little chair when we all sit around on the floor and listen to a story and sing some songs.  I like to sit in it even when we’re not singing or reading.
 
When it’s time to go, we all get our backpacks and sit at the table.  Jack is sitting like a good boy at the table waiting for his mom.


Here’s me and Jack with Miss Natalie.  She is our teacher.  We like her a lot!


This is Miss Sue, and she helped me a lot when I wasn’t big enough to walk yet.  She is SO nice!


I gave Miss Sue some extra hugs while we were getting ready to go.

It was a pretty exciting day.  Now I have a few weeks to do other stuff with Jack before I go back for Summer School!  I can’t wait! I love school!