Success!

I realize that I am slacking at blogging about this school year and while I've laid in bed several nights in the last month with the urge to get up and blog about something that's happened, I'm honestly exhausted by the end of the day.  It's been a rough few weeks as I've tried to get some issues straightened out at school.  I'll sum up the issue to catch you guys up......

First, we had a meeting May 6th to talk about Kennedy's progress last year and the suggestion was brought to her ARC meeting that Kennedy could possibly benefit from an iPad as she has the most trouble with writing--either legibly or without getting tired after just a few words.  I was told to work with Kennedy this summer about learning letters on the keyboard and just getting her more comfortable with typing.  Well we did that.  And despite multiple emails---many even un-returned-- I tried to figure out what was going on with the iPad since the first day of school.  While I understand teachers are busy, I can't just sit by and watch my child have such difficulty with school when a piece of technology could be so beneficial for her.  I even offered to purchase an iPad if they would help us with the Apps (some of the apps they suggested for Kennedy were big bucks--like $200 bucks-- yikes!)  I was told specifically not to buy one and to let the school do it---but no at the school would give me any information on anything.  Then, I receive an email stating that Kennedy is going to have to go through an assessment to see what technology would be beneficial for her.  Ok, no one said anything about that in MAY. And we had an entire month of May, a summer, and all of August to get any assessments done, but here it is, nearly September, and no progress has been made.  So I emailed the new principal about it, and what do you know, the next morning I was receiving phone calls to set up meetings and plans were being made for Kennedy to try out an iPad in another classroom, and so on.  We have her team meeting on Thursday so hopefully good things will come from the meeting. I just want Kennedy to be a school that is looking out for her best interests and if it's not her current school, then perhaps it's just not the place she needs to be.  While I would hate to pull her from a school that she's been at for 3 years now and away from her friends, I need to do what's best for her in the long run.  I'll just have to make some decisions after the meeting on Thursday.

On a happier note, I sent a referral for the Michelle P Waiver for Kennedy last week.  Before I had my current job, I had no idea about this program, but I think that it would be FABULOUS for Kennedy.  Basically, it's somewhat like the program that my work participates in (and we work with this waiver program also), except the clients can live with their parents/guardians.  It would help Kennedy get the services she needed, such as speech, OT, and PT and also as she got older, the program would help her with supported employment and other things to become more independent.  She should be getting an assessment scheduled within the next week or two and the approval process takes a LONG time, but it will definitely be worth it if I can get her approved.  This is definitely NOT something that is just passed along freely to families of special needs people so if you know someone with special needs people (kids or adults-- mental or developmental disabilities), I'd LOVE to talk to them about this AWESOME program or make sure that they go to the Medicaid website for the Michelle P Waiver. 

And here's the best news I've heard in a LONG time........After a long, stressful week of attempted to study spelling words last week and after an exhausting and eye-opening day today at work, Kennedy and I got home and I was going through her backpack and what do I find.......

....a PERFECT spelling test.  Not only were all 6 words SPELLED right---they were written by Kennedy without any scribe needed!!!!!  So of course, we called all those near and dear to us to spread the news and headed out to Dairy Queen with my mom to celebrate with an ice cream celebration.  Kennedy already knows 3 of her words for this week since we got our list on Friday so I'm hoping that after all the celebration tonight, she realizes that spelling tests can be very rewarding. 

So needless to say, the last month has had its ups and downs, but it looks like things are starting to work out in Kennedy's favor and all our hard work is beginning to show results!  Hopefully I'll have more fabulous news to blog about soon.  Stay tuned.... :)

1st grade kick-off

Today was the 3rd day of school and Kennedy is already less than excited about the school year.  This morning, she ate very little for breakfast despite our begging, pleading, and threatening.  On the way to school she looked at me and said "My belly really hurts."  I could tell from her face that it wasn't that she was hungry, but that she really didn't feel good.  I told her I would walk her in and take her to the bathroom and stay with her until I knew she was ok.  Then she said, "Will you stay with me for writing too?"  I told her I didn't think the teacher would let me stay because parents were supposed to drop the kids off and then leave.  She was really upset by this.  She hates writing because she tires so easily and she has tremors in her hands so penmanship is not her strong point and she gets frustrated. 

We got to school and she slowly walked across the parking lot, clingy to my hand and just whimpering.  I quickly took her to the bathroom and she didn't really have to go.  I walked her to the gym then she begged me to stay with her until her class came out and headed to her room.  I think her little tummy was just upset from her nerves and I just hate that for her.  In turn, I was feeling sick all day myself because I was worried about her.

Fortunately, I already had a meeting scheduled with her teacher for this afternoon so I talked with him for about 45 minutes about Kennedy.  He was very interested in learning about Kennedy and told my mom and I some things he had observed thus far--which were actually good things.  She has been raising her hand and answering questions correctly so far.  She has been chatty with her friends sitting next to her.  He also gave me a couple leads on teachers who tutor kids after school, however I'm not sure that one would be a very good personality fit for Kennedy.  The teacher also told me that the kids will have math homework every night, spelling words to learn every week, and some other reading homework throughout the week.  I could have just cried right there at his desk.  Math is one of the most frustrating subjects for her.  Which means homework time will be less than fun in our house.  Also, the thought of her learning spelling words AND having to learn to write them when she already has such a hard time writing just makes me sad.  I hope to goodness they can get Kennedy's iPad soon so that she can type her homework.  Honestly, I don't know how we're going to make it through the school year without some super-powered tutoring....and any other help we can get.  Please keep Kennedy in your prayers that we can assemble the right team of mentors/tutors to help her succeed this year.

In other news, we had a rough weekend with the Depakote Sprinkles again.  Kennedy gags on whatever food I put them in and makes herself throw up.  It's not fun and definitely frustrating because administering it takes FOREVER. Yesterday before church, Kennedy learned that she could just clamp her mouth shut and refuse it all together.  I had to hold her head up against the wall and literally force her to take it.  I felt awful afterwards, but I knew that we had no choice and not taking it was NOT an option.  So last night and this morning I gave her some of the Depakote liquid medicine that I had left over from before all the medication changes and it was much more pleasant.  So this morning, I called Vanderbilt and told them that for the sanity of my entire family, they have to put us back on the liquid medicine again. So.......we're back to the original two medicines that we were on before our checkup in early July.  Basically we had a month of medication changes for nothing and returned to the medicine that worked the best in the first place.  Talk about a waste of time.  But Kennedy was MUCH happier with taking two medications tonight since it was in liquid form.  When Kennedy is happy---everyone is happy! 

So today had some ups and some downs.  Hopefully we can get through this school thing.  I see MANY sleepless nights ahead......

Accomplishments of the summer

As summer comes to an end this week, I thought I would look back at all the things Kennedy accomplished.  While there were lots of things that I was hoping for----like extra work on the stuff she learned in Kindergarten---she did make some big(to us) accomplishments.

1.  She learned to climb up on the kitchen counters (with and without a stool)--something that I wasn't sure she'd be able to do with her balance troubles.....

2.  She learned how to jump off the counters once she climbed up on them (which is entertainment in itself)

3.  She can now open and close the blinds-- which is awesome give the fine motor skills that requires and her struggles with her hands!

4.  Kennedy also had blood work done this summer---sitting in the chair by herself!  Then had it done two more times with only minimal crying/screaming :)

5.  She learned to open her new medicine and pour the sprinkles into her food without losing too many of them

6.  She's learned to crack eggs open for breakfast

7.  Now, she can get her own ice and water from the refrigerator door

8.  At restaurants, she now orders her own food/drink

9.  Her manners are improving--significantly

10.  She's beginning to test the limits when it comes to things I ask of her-- she's quite the negotiator!  (I'm not sure that's really an accomplishment, but at least she doesn't just let people tell her what to do--she stands up for herself!)

11.  She has enhanced her comedian skills-- that girl can make anyone laugh!

12.  Kennedy can not only open, but also put on her own band aids now (We can now go through a box a day instead of a box in a week..... lol)

13.  She has FINALLY got the "w" sound down-pat without having to be reminded to correct herself! (that's a BIGGIE)

14.  She's made new friends and GREATLY improved on her social skills

15.  She's learning and remembering Bible stories that she's learned in church or that we've read about in our books

16.  Kennedy learned to jump off a diving board AND go down the big slides at the water park this summer--by herself!

17. And today, she went up 3 flights of stairs while I went up in the elevator and she beat me to my office!! Yay for those super strong leg muscles!! :)


I'm sure there are probably more accomplishments she's made this summer, but these are what I can think about on the spot.  I'm sure to most people these are things that their younger children have done or things that don't really seem like accomplishments.  But every single one of these things are tasks that I honestly wasn't sure if she would ever master--at least not for a long time.  While we still have work to do and things to learn, we're getting there slowly and that encourages me every single day.