Difficulties & Kindergarten on the Horizon

We've had quite the difficult summer when it comes to Kaitlyn's Aspergers. There has been terrible regression in bathrooming and she has been back fully in Pull Ups since about mid July. She has just recently gotten better at going to the bathroom while at home and will go on the toilet a few times a day. She is telling me that she is having trouble, sometimes, feeling that she has to go but I really think that comes down to her sensory and control issues. We're still working to get her back in underwear because she has her first day of Kindergarten this week on Sept 8th. As of now, the school has told me to send her to school in underwear and send extra clothing with her in her bag and they will help change her. This is one big concern for me for a lot of reasons that I may not get into right now... we'll see how it goes and I'll update. I do know that it bothers me to think my child would be the one getting picked on for going to the bathroom in her pants (and, as she does, not telling anyone) and being the "smelly" kid.

It's also been a pretty meltdown filled summer as well... there has been a lot of routine changes and uprooting and changes in schedules and all kinds of instability for Kaitlyn and she has not handled any of it well. I do believe that has had a LOT to do with the regression and going into a regular public school kindergarten is only going to cause the regression to worsen. I'm looking forward to getting Kaitlyn back into a very rigid routine and hopefully control some of the outburts.

We did do a trial with her and took her off of her medication for a few weeks to see if it really was helping and we found that, though it doesnt seem like a lot, it is helping. Without the medication the outburts and meltdowns were horribly worse. She became very aggressive, angry, destructive and violent.

Now, as I mentioned, Kindergarten starts in a few days and acedemically Kaitlyn is more than ready. She has been doing workbooks at home and is doing 1st Grade work in them. She is starting to read a lot more too and LOVES LOVES LOVES learning and how things work and is constantly asking questions about things. She is my little "Johnny 5" and "needs input!"

Kaitlyn will be starting Kindergarten in a regular public school. For the first week of school the kids will all be clustered together and evaluated on their acedemic skills against their peers and then placed in a classroom with a teacher. We have no idea which teacher Kaitlyn will have but we do know that each class will have 1 teacher annd 25 students. We do NOT see this going over well as we all know how Kaitlyn does NOT do well with large groups and also is delayed when it comes to social, emotional and behavioral things. Basically we're going to send her into school for a few weeks and see how it goes before heading back to the CSE... we're going to tell the CSE exactly what we want for Kaitlyn (ultimately we want her to go to Crossroads) and if they do not agree to give it to us then we will be pulling Kaitlyn out of the public school and will be homeschooling her. We feel that she will be served better at her own acedemic pace and will then be able to spend time working more on her social, emotional and behavioral growth and then we can attempt 1st grade next year when she is a bit older and hopefully learned more skills.

It's all, again, a waiting game and we will see how things go!

Rotterdam Challenger Baseball

Kaitlyn had a wonderful time playing Baseball and did so awesome at it! She had a great coach and a great team. We cant wait to get to play again next year! She was a great player hitting the ball every time at bat on her own without help from anyone!

She even got a little trophy at the end of the season and a banquet... which was a WHOLE lot of people and she had a very hard time being at but the season was a success and she really had a great time and we are so happy we got the oppurtunity for her to play on the team!!

At a Crossroads (Center for Children w/Special Needs)

Over the summer we were lucky enough, thanks to Thrivant for Lutherans, to be able to privately send Kaitlyn to Crossroads Center for Children. Feel free to click the logo to check out their website. I'm so grateful to them and all the work they did with Kaitlyn for the VERY short time she was there. She did AMAZING there and loved it and told the teachers she wished she could come EVERYday.

It was crazy how every single day of school in Preschool we fought and she cried and kicked and hid just trying to get her into the classroom and how I had to carry her in kicking and flailing and hand her to a teacher and walk away... then we go to Crossroads (who uses ABA methods there - AWESOME!!) and she ever so willingly and happily walked into class everyday, rarely even remembered to say bye to me or anything. She would go hang up her bag & lunch on her hook and go into class without a word. It was amazing how comfortable she was there.

In the short time she was there she definitely learned some sort of social skills because one time we went to the mall to let the kids play and a little girl asked Kaitlyn if she wanted to play and st first Kaitlyn started out her sentence with her own agenda BUT stopped herself short and said, "what's your name?" - something we HAVE never seen her do before!!!!! It was SUCH a huge thing... not to most people but to the parents of a child with Aspergers it was the most wonderful scene and put huge smiles on our faces and made us so proud!

Thank you Crossroads for giving Kaitlyn the few tools you were able to give her in such a short time!

Tyler got to spend some time in the Daycare room at Crossroads as well which was an integrated room (as was Kaitlyn's) and at first he was ok to go and play with his new friends but as the weeks went on he was more and more unhappy about leaving mommy.

They both "Graduated" from Crossroads Center on Aug 19th.

PreK Grad, Gym Show, Birthday, Dance Recital

Yes, yes... I know, once again a LONG LONG time between posts! We've been a busy family this summer and getting through the end of PreK last year was tough! We did make it and Kaitlyn graduated from Care-A-Lot Nursery School in June 2010! We had a lot of regression through the year but in the end Kaitlyn really misses Miss Christy her Social Worker who made her a great Social story and a photo book about Kaitlyn's feelings (took actual pictures of K to make both things!)

We were not exactly happy with the CSE meeting in April as they "declassified" Kaitlyn telling us "we dont care about her behavior or if she can be with other kids, as long as she is able to learn." So we had everything taken away from us and we will be heading into Kindergarten with nothing. I'll get into that more in another post! :)

I'll start where I left off last. Kaitlyn did her Gym Show for dance in March and it was great, she was able to do many more of the gymnastic moves this year from the last! What an improvement! Her little Baton routine (we were unable to get pics because she was on the other side of the Gym! GRRR!!) was cute and she did SO well. It's amazing that a 4yr old can learn an do those things! She did wonderful and we're very proud of her for getting out there and doing it.

Again, Kaitlyn's dance Recital on the Big stage at Proctors was on the weekend of her Birthday so we ended up having a little party the weekend before for her at Chuck E Cheese (her choice!!!) with a few of the kids she knows and she had a great time. Overstimulated and overwhelmed and everything she still loved her party and had a wonderful time... she was able to tell the GIANT furry Chuck E Cheese character to stay away from her because she was uncomfortable and everything and I think being able to express her feelings about such things REALLY helped her enjoy herself.

On Kaitlyn's birthday/recital weekend we had Grandma Lois, Aunt Donna & the boys come and stay with us and Grandma Lois came to the Dance recital and afterwards we had a little BBQ Birthday party with just the family. Aunt Michelle, Uncle Jon and Cousin Ben came over too. It was a nice little party and we did cake and all that and just enjoyed the weekend together. Kaitlyn's actual birthday was on Sunday so Grandma took us all out to IHOP for breakfast in the morning to celebrate Kaitlyn's actual day. It was a great way to start her birthday day! :)

It's amazing that my little girl is 5yrs old! When we went for her well visit she was 41 3/4" tall and weighed 36lbs. As far as health she has some issues with her asthma when sick or when really humid out and we've had to use the Nebulizer a few times through the summer. Other than that she's a pretty healthy little thing for the most part! No major issues to report!

Kaitlyn did amazing at her Dance recital again this year. She is older now and able to express how she feels (and is also able to see now with her glasses) so she was VERY anxious and very scared to get up on the big stage but she did it anyway and made us all proud! She did a dance called Beautiful Baby and had an orange and black costume.

This season we're off to another year of Kinderdance (which MIGHT be her last year but we'll see at the end of the year). This year she needs both pairs of shoes, though I must say, we're pretty lucky to have gotten 2 yrs out of the same pairs of dance shoes!! That doesnt usually happen! She will still get plenty of use out of the baton we got last year so thats one less expense. She has already told me that she does not really want to do the show on the big stage but we're going to wait a little while and see how it's going when it comes time to pay for the costume. If she REALLY doesnt want to be on the big stage she doesnt have to. She IS, however, VERY excited about doing the gym show now that she has perfected doing a headstand!!!

Always a Mystery

I know I haven't updated in a while but there isnt much to say things have been the same for the last little while. We do have Kaitlyn's CSE meeting coming up April 1st so I'm sure I'll have a lot to say after that since thats when we talk about Kindergarten next year.

K has been sick with a high fever for the past three days and hasn't been to school. She's not complaining of anything else, no ears, bladder, nothing to indicate why she has the fever... these things come and they are always a mystery to me!

One bit of big news... Kaitlyn's Gym Show is this coming Sunday. She has rehearsal on Saturday and then Sunday she will be doing a Baton routine and gymnastics-type routine. Hopefully I'm able to get pics and video while keeping little brother under control! HA!

SAWIIIIIIIIING BATTER!!

Just popping in here to say I found a Free Baseball League for Kaitlyn to become a part of and I'm so excited!! We got her all signed up and the league starts at the end of April! I will be back later today I hope to update on how things have been going lately... we NEED an update! I did want to make sure I got the Baseball thing in here though! She will be playing 2 "games" a week and all the kids get to hit the ball and run the bases and they play about 3 innings and they get T-shirts and Hats and even a banquet and trophies at the end of the season!!! How exciting! :) This is SUCH a great oppurtunity for her socially and I can't wait!!!

Need to Find Acceptance

I think I just need to find acceptance that Kaitlyn is always going to be her. Tantrums, anxiety and all. I have started another behavior-type blog monitoring tantrums and bathroom issues and all that. I can't stand doing it because it just shows me on paper whats going on and I feel it enough emotionally and physically that I dont care to see the same things over and over on paper. I'm just hoping that this will help with either some medications or some sort of work to help her through this.

I am very pleased at how she (and I) handled her cousins Baptism last weekend. It was a very unfamiliar, uncomfortable church and I noticed the signs quickly and took her off to a space where she could walk around with the anxious energy and try not to worry so much about what was going on. Overall she did well at the house with all of the people too. She just didnt talk to whom she didnt want to (which I later explained why they didnt get the normal warm welcome children tend to give family) and she just went about being herself.

Anyway, not much of an update I guess.

Well this month has been kinda rough on little miss Kaitlyn. She's had some acidents and then about 10 days of nighttime accidents (which have cleared up, btw, after me talking to her about the ABC Train!!!!!! Pfffffft to you silly Dr's who think I'm crazy and know nothing!) and then this past week has been just horrible with tantrums and meltdown after meltdown.

We went to see the Developmental Ped again for a follow up last week and we decided to keep her meds the way they are and just keep and eye on the behavior and see if it is getting worse, same or better. I decided that I'm going to start, yet another, behavior type log. I had stopped doing it because I got sick of writing the same things over and over but this one will be a little different and just simple. I just want to track a few things and check for patterns and things not find out WHY she is melting down... I know why those things happen!

So far her therapy at school has been so limited I dont see that she has gotten anywhere with it. She hasnt even had enough time with the therapist for me to go to the school and say anything about it. It's frustrating to say the least and I'm not one for playing this waiting game. Nothing else I can do though, I'm stuck in the muck on this one right now.

This week Kaitlyn has had two BM accidents at school. On Tuesday when she had one the teacher had her clean herself up and take care of everything on her own, which I understand the whole building independence thing, but Kaitlyn came home with a terribly raw rear from not cleaning well enough and she was crying because she couldnt sit down in the car it hurt so bad. Then today she had another accident. She said she was busy making her stairs (with Legos) and that she didnt want to leave them so she ended up waiting too long and barely made it to the bathroom with a small accident in her pants. In talking to Kaitlyn about it I could feel her anxiety coming out when she told me that she couldnt get the stairs to go "right" and she needed them to be right before she could go potty... also she feared that if she left them to go they might be gone when she came back and she was right... when she came out of the bathroom the legos were put away and the table was moved. She started crying as she told me that part. I can tell that those things make her anxious - she didnt get to put them away and clean up (her words) so I think she didnt get closure on that activity and it's extremely hard for her to move from one thing to another like that.

Tonight has been fun so far, while I was cooking dinner I told the kids to go find something to play with (we practically own a toy store here!!!) while I made dinner. That was just before 4:30pm and that began the screaming and crying meltdown. She had no idea what to play with that was fun and she was demanding that I find her something fun to do and on and on crying away... for a min or two she got quiet and I heard her Leapster2 game turn on so I figured she found something "fun!" Well little brother must have grabbed the game or something and the Leapster started acting funny and not playing the game correctly... this sparked her and escalated the meltdown and it continued on and on and on about how she couldnt play the game, it's not working right, it's broken, she'll never play it again, etc. By this time it was after 5pm and dinner was on the table and she sat down still in her meltdown (which I asked her to get control of if she were going to sit at the table with us). Well... she went to take a drink of her milk and decided that her milk was "too cold" and more escalation to screaming and crying and totally losing control. I ended up sending her to her room because that behavior is not appropriate at the dinner table. She needed to go up, get control of her behavior and center herself... over all the meltdown was 1 hour and 41mins of screaming and crying and stomping and flailing and she did end up with pretty much nothing to eat for dinner since she couldnt not get control of herself.

Now... I look at the moon phase and wonder... what am I in store for tomorrow & on the weekend with the schedule being crazy from the Baptism and since the moon is ALMOST full... I guess we'll find out!!!

The Missing Pieces

So I mentioned in the last post that Kaitlyn was having potty issues at night for about a week or so off and on... Well I think I may have found out WHY!

A little back story: At church they have this cloth ABC Train zip-up book-like thing. Inside are little cloth stuffed animals with letters on the back of them. Each of them goes in the matching letter car on the train. Well, it used to be downstairs with all the other toys in the play area. Somehow it ended up upstairs in the back of the church where there are coloring books and puzzles and quiet toys for the kids to keep busy while we enjoy service.

Well, on Sunday 1/10/10 Kaitlyn found that this toy had made its way upstairs and she was playing with it and putting all of the letters in their correct train cars. She (and I, just from watching her play with it) noticed that there were two animals missing from the train. They were all there when it was downstairs!! So she didn't mention it but I saw her looking through the bins and all over to try to find the missing letters. She didn't find them... she still never mentioned it but I knew it was kinda bugging her a little(and ME! but I didn't say or do anything of course). Then this past Sunday she was REALLY looking for the two missing letters and I knew it was really getting to her that she couldn't find them but it's not something she openly discussed so I thought once we left church it was something she forgot about. Ya know... I thought it bugged her at the moment of playing with it but once it was out of sight, you wouldn't think of it.

Apparently, for Kaitlyn, this is not true! She has been carrying this around for a week and a half!!! It has been eating away at her and last night she had a nightmare about it! Last night at almost 11pm I heard Kaitlyn upstairs crying and yelling out "Stop!, Stop!" and she wasn't calming down so I knew it was time for me to go up and see if it was a nightmare or night terror and try to help calm her. Well this is when she told me she had a bad dream about looking for the missing letters for the ABC Train at church. She said she looked every where for them, she looked in both bins upstairs and they weren't there. She was telling me this all while crying and very upset. This afternoon she told me why it was so scary. She said in her dream she was at church looking all around for the letters and when she looked up everyone was gone and she was alone at church and that was what scared her. I calmed her and told her that this Sunday I would help her look downstairs for the missing letters and not to worry about it. I then asked her why she was holding her head and yelling stop. She told me "to make it stop" I asked "to make what stop? your head?" She then got visibly upset and said "yes, 'cause it's going all crazy" and she waved her hands around her head. So I reassured her that we would look for the missing letters this Sunday and to try to get back to sleep. She did.

I truly believe that this is the reason she has been acting out more the past week and a half, the reason why she has been having bathroom issues at night. Her anxiety must have been heightened this past Sunday from seeing/playing with the toy and perhaps that is why she has been getting stuck in her dog character the since Sunday? Could this be why she has been acting out even more and having tantrums the past few days? It seems to me that it is... that she has been carrying this weight around with her all this time and that those missing pieces are bothering her so much because it's not complete, it's not perfect, or whole. I know that feeling... I will throw puzzles away if they are missing pieces for a long time because I can't stand them being with the other puzzles. I absolutely HATE when toys are missing pieces, it drives me bonkers... I just wonder if she is feeling that because of her OCD tendencies and preference of order, perfection...

Again, thing that make you go, Hmm?

We're off this afternoon for a drive down to the Developmental Pediatricians office in Woodstock, NY. I'll try to update how that appointment goes soon.

Ruff, Ruff

So far today has not been the best day for Kaitlyn. She started her day at 6am with a wake up call from her bladder which caused her to have to change clothes and ultimately waking up the whole house and no one went back to sleep. She's been having accidents at night now for about a week or so every other day maybe. I'm actually sick of running out of panties for her and having to do extra laundry every other day! So I picked up some pull ups incase we need to use them for a few nights to help her remember to get up and go!

Anyway, getting her off to school was MORE than a challenge today but we did manage to get there just on time. When I picked her up, however, I was told that she was really good all day up until the end of school. She started acting like a Dog and then got "stuck" in the behavior/character even after being asked to stop. She continued to the point of spitting which caused her to get "in trouble" and to get a "yellow" for the day. The teacher said she seemed mortified by her own behavior and that she seemed unable to stop because she was "stuck."

She's always gotten "stuck" on things but it used to be with playing with things or other stuff... now that she is into becoming characters she gets stuck in them and ends up going too far. We handle her at home by ignoring/re-directing or telling her that "we're talking to Kaitlyn now" but she's obviously taking that behavior elsewhere... though I guess the more time she spends at school the more of the behavior they are finally going to see. I just wishing it would go away or get better rather than her seeming to be getting stuck in these characters more often. She's been caught up in being a dog for the past 2-3 days... to the point of completely not listening to us and ending up being yelled at or taking it to the point of doing something inappropriate and getting a time out. Some times she will go a few days only talking through her stuffed animal Mary and some days a robot or a cat. Sometimes she will get stuck being characters on TV and acting out episodes and will go so far into it that she ends up "going too far."

Is this just something she is going to do the rest of her life? We're going to have to help her get "unstuck" from things?? Will this type of thing be grown out of? Is this from the social part of her that is underdeveloped?? So many questions and only time will give us those answers, I guess.