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.

Kaitlyn's been doing alright for the past few days... until today. I'm not sure if it's because I forgot to give her her meds first thing this morning or just because the plans (Mommy's anniversary surprise for Daddy and Family) she knew about got squashed for yesterday. She was the most upset about not being able to go for the special family time I'd planned and cried and cried but then seemed to get over it. Then this morning she has been acting all silly and goofy and then ended up in a screaming tantrum for about 30 mins which then led to not going outside and a Time Out. Maybe she just needed to get that out because now she is calmly and quietly sitting at the dining room table coloring.

So I spoke to the Therapist that goes to Kaitlyn's school to see her and mentioned a few things to her and one thing she asked me to look for during K's "play" was that when her toys have an issue come up does Kaitlyn come up with solutions. The answer is No! Since I got a few chances now to really sit and listen and then even with some prompting she has trouble figuring out solutions. We even give her a couple of choices and she will have trouble deciding but might go along with one of them.

Anyway, an example of what I mean... Kaitlyn will play with stuffed animals or her Polly Pockets and she will make them talk to each other (you can tell how bad she wants to have conversations with people but HATES that conversations aren't scripted or predictable! She would be a GREAT actress!!!) and then usually some problem will come up like Polly can't get her hat on and she (Polly) will be crying. What has been happening is that the problem comes up and she (Polly) will cry for awhile and then K will either move on to something else or she just goes on to another doll in some other situation or just starts a new conversation with Polly. It's interesting to watch and I've gotten to see her play out these "problems" with a few different animals/dolls now and each time the issue comes up but the solution never happens.

I'm not exactly sure what that means and why that is so important but hopefully the therapist can shed some light on that for me. If anyone has any ideas, let me know!! I'm curious to know where that leaves her social development/skills.

No One Would Listen So I Just Gave Up

So yesterday Kaitlyn went to the bathroom in her pants and she says she tried telling the teacher but "no one would listen so I just gave up" and the kid walked around with poop in her underwear all day and by the time I picked her up it was... well you get it... it was there all day her poor butt was red and sore!

I talked to her a bit about it and told her if they didnt listen she needed to go tap the teacher and make them listen. I told her they have extra clothes there for that reason and she needs to tell them she needs to change.

Argh! How did no one KNOW?!?!?!?

Inhibitions, What?

This morning after Church the Aide from Kaitlyn's Sunday School class comes up to me to tell me about class. He says they were doing a story about God coming down as a dove to sit on Jesus's shoulder and they used a picture board with a picture of Jesus and they set the dove on his head/shoulder and Kaitlyn asks "Did he poop on him?" Hahahahahaha Nice... just the thing my daughter WOULD say in Sunday school, huh?? Very funny but inappropriate!!

Ah well... that was the only mention of poop during Church so thats a good thing!! :)

Those Poor Poor People

Well I figured since I sold some of Tylers smaller clothes and got the money I would head out to the store to pick up a few things we needed and get some ingredients for a few dinners. Well Kaitlyn had to "go potty" 3 times and barely even went the one time I did take her. Then was throwing her "Mary Monkey" around in the store so I gave her a warning and told her that Mary would be gone for the night if she did it again, since she was not being responsible or respectful of her toy. So I turned to get some cottage cheese and when I turn back, who is on the isle floor?!?!?! Right, MARY! So I picked her up and put her in my pocket. Kaitlyn FREAKED and threw a HUGE screaming tantrum the rest of the way through the grocery store and the entire time we had to stand in what seemed like the longest lines in the world at that moment! There were at least 17 people that looked at me like I had a rope around her neck and was making her do it. I just looked back at them and smiled. One guy even covered his ears she was screeching so loud... I felt bad but I wasnt about to give in because of some old guy in the checkout lane! Yeah right!

Anyway, that was fun!

The whole Mary thing wasnt the only issue yesterday... since Jon picked her up at school she was tantrumish and I think that was the last straw. She was upset about things that happened at school and in general was having a bad day. The kid seems to be getting more confused about things with the social worker coming to see her. Ugh... this whole school thing is rough on her and she doesnt understand why the other kids "dont want to play with her" or why "they dont want to talk to me..." I'm not there to see whats going on but I wish I was. I wish I was there to help her or could get some feedback from her teachers. They are regular PreK teachers and are not trained to look for what I need them to look for or to help her with what she needs help with and that annoys the living crap out of me! AHHHHHHHH!!!

Anyway, she ended up being very tired today, fell asleep in the car at like 5:30pm and then both kids went to bed early. I think she is getting sick again. I just wish I didnt feel so helpless sometimes.

Sweet Little Girl

I found out last night that Kaitlyn (and her OCD) is such a sweet little girl! She was in the bathroom before bed, taking FOREVER, supposed to be brushing her teeth and going potty. Well I started to get irritated that she was in there so long, thinking she was screwing around I told her "Ok, Kaitlyn, you're done now!" kinda firmly. Then we went about heading up to bed.

Well a little while later I went into the bathroom to go myself and sat down on the toilet and looked at the toilet paper roll... I was just in awe and said to myself "what a sweet little girl!" Why, you ask? Well... someone's little brother a bit earlier had gone in and unrolled a ton of toilet paper on the floor and I was getting them ready for bed so I figured I would just take care of it (roll it back up) after I got them to bed. Well... THAT is what took her so long in the bathroom... she spent all that time rerolling up the toilet paper from the floor AND going potty and brushing her teeth before bed!! She's such a sweetheart!! I'm sure she did it because of the whole ocd and thats not how the toilet paper should be but it was still awesome! :) She made me smile with something so simple without even knowing it!

Though when she woke up this morning I told her how wonderful it was and thanked her!!

I Can See Clearly Now the Rain is Gone

First I want to start off, because I totally forgot about this yesterday, with what Kaitlyn was asking in the car on the way to the mall!!! OMG! We're driving on the way there and all of a sudden from the backseat we hear Kaitlyn ask something... at first we didn't really hear her so I asked her to repeat herself - and got scolded! "I was asking DADDY!" Well... excuse me! lol Anyway, so she asks (after taking the loooooong sentence around) "how do they get the meat from cows?" WHAT?!?!?! I looked at Jon with bugged out eyes... because, like we're really going to tell her HOW they get the meat from cows? Anyway, daddy says "there are different parts of a cow where different kinds of meat comes from..." you KNOW that wasn't good enough lol She starts again... "No, no, no, Daddy... but HOW does the meat COME from the cow. Cows make milk, I know... but where does the meat come from?" Well this type of questioning went on awhile and we kept trying to get around it but finally Jon came to the answer of "well, I dont get the meat from the cow so I'm not sure exactly HOW." And I added, for good measure, maybe when you are older you can ask a chef! LoL It was crazy... she really wanted to know!

So on to the post! This morning seemed great, it's Tuesday and K loves school on Tuesday with the one teacher and only six kids! YAY! She got there, changed into her sneakers and went into the gym without a hitch! YAY again! Then... DUN DUN DUNNNNNNN... I picked her up. We got there and she was getting her coat on and changing into her snow boots and all that and then was yanking on me to get out of there as if she couldnt leave fast enough. She had the blankest look on her face, almost mopey and I asked her how her day was... she just kept her head down and said "boring." Which, DING! DING! DING! mom knows, is her default word for any "bad feeling." So... I tried to get it out of her on the way to the car, what was wrong but all I got was that she was "tired (yeah I could see that) and bored." Finally, IN the car, the truth comes out. I got her talking about her day with our *Rule: Must tell us 1 thing about your day. So she told me... and she was SOOOOO sad!!! She said "I tried to play and tried not to but I got frustrated." OMG OMG OMG OMG I'm freaking out that she is actually TALKING ABOUT HER FEELINGS!!!! YAY!!!!! So, holding it together, I questioned a little more and got what I needed! she finally, today, after all this time was able to tell me that she had a hard time playing with the other kids!!! Sounds stupid to be excited about that but it just means she is starting to understand it... that that type of thing doesnt come easy for her... that she will need help with it and will need to work on it! YAY!!! She's GETTING it!!! She's only FOUR!!! hahahaha

Ok so what I managed to get out of it all was that she had a fine time playing in the gym since it wasnt much back and forth play. Then they went up to the classroom and while they were playing playdoh and she asked for things and they were given to her or was doing things her way she was fine. THEN it got to a point where she tried playing with the other kids (not sure doing what) and they wanted to play a certain way and not her way... she said it made her very frustrated and upset. So I explained to her that it was ok for her to feel that way and that, for her, it's a little hard to play with other kids and understand when they can be so confusing. It is VERY confusing to her when at one point they will do "her will" and then all of a sudden they have their own ideas and plans!! She doesnt understand WHY they wont listen to her anymore or play "her way."

Anyway, I'm just glad to see that SHE is actually getting somewhere in this emotional/neurological mess she is in. There is so much hope for my little girl and she just needs the help and the push in the right direction. I wish we could get her there but it's going to be a fight to the end and I see it now. Hopefully over the summer we can get her into the program at Crossroads and she will have a fighting chance before Kindergarten!

Some Days are Just That

First of all Happy New Year! And thanks to my daughters Preschool class she thinks something is WRONG with her because she did not "see the big ball drop" for New Years! She's FOUR - she was in BED!

It's been a strange couple of days. Kaitlyn must have cabin fever or something... she had a VERY strange "Stim" day where she literally would not stop talking or NEEDING to do something and pushing ever boundary. We tried some "Pillow Play," which is some safe rough play for the kids (they get to be loud and jump all over pillows and off the couch into the pile and Daddy joins in!). However, by the end of the night we ended up having to use "compression" on her. Well I mean Daddy had to restrain her (lightly) and just let her wrestle in his arms to try to help get the "need" out of her. I don't know if it had anything to do with us mainly playing inside and then I took them out to play in the snow and the fresh air "went to her head" or what but she was having a rough time dealing with whatever it was going on inside of her.

Then yesterday we decided to take the kids to the mall and let them play in the play area. It's just freezing outside and they cant get much exercise there. Well there was a little boy there about Kaitlyn's age and he seemed to want to play with her (and the other kids!) and she really wanted nothing to do with him and did get rather frustrated (breaking down crying) when he was getting in the way of her imaginary ice cream store. So Daddy offered up the suggestion of "Closing up the shop" as a way of getting her to stop playing the ice cream store (since she was in a climbing thing in the middle of a public play area and we really couldnt KEEP people away from it! lol) and at the same time having some closure about it. She went over to close up her store and said "ok, ice cream shops closed up for the day!" just out loud but not to anyone inparticular. The little boy yells out "No it's NOT!" and says started to get upset again and said "Yes, I'm closing up my shop" and the boy says "well, mines NOT!" He didnt seem like the nicest kid around but whatever - I'm not his parent - I dont think I liked her much either, but thats a whole other story! Anyway, what I'm getting at is that that whole thing socially... just didnt work out well.

Then I noticed a VERY peculiar thing!!! There was a young girl there (preteen? Maybe 10yrs old) and she started playing around on some of the equipment with a couple of other girls. I noticed Kaitlyn all of a sudden CLUNG to this girl. She must have said Hi to Kaitlyn or something and then K asked her name... cool! However, Kaitlyn then started mimicing EVERYthing... and I mean EVERYthing this little girl did. The way she walked, any sound she made, the way she climbed on something, sat on something... it was one of the ODDEST things I have ever seen and we had to STOP her because the poor girl was going to freak out that this little girl was following her around getting WAY too close in her personal space and literally doing EVERYthing she was doing. Kaitlyn must have taken to her because she really looked like a much older version of herself! She was thin like K and had brown hair like K. It makes me wonder if K was trying to BE that little girl... or emulate her or whatever it's called. She saw that the little girl had a relationship/friendship with the two other older girls that had come in the play area and I think she wanted that too! It was amazing to watch and scary at the same time... because THAT is why kids think other kids are "weird."

We did end up having to tell Kaitlyn that she needed to give the girl some space because she might "get bored" of her following her around like that... Jon chose that word because Kaitlyn understands boredom... he thinks had he told her the little girl would get annoyed that might have been a bad thing lol! It did work and she would only periodically do the mimicing thing and Jon would remind her to stop and she did.

She ended up, obviously, being triggered by the whole play area thing and finally managed a tantrum and breakdown after dinner and before leaving the mall. I ended up just picking her up and carrying her (most of the way - Daddy finished!) out of the mall crying over my shoulder. For some reason she just needed to get that out! I really think she felt better after... it was interesting to see and enlightening at the same time!!

In a Dark Place You're Likely to find.....

A MUSHROOM!!!! lol K got her mushroom haircut back and couldnt be happier! She forgot her glasses when we left the house so she looks kinda weird, not to mention this is a pic from my cell phone. She's so happy with her haircut and getting to go to the Salon and let Miss Lindsay cut her hair!

So today was a little bit better behavior day... I think the meds are starting to kick in. We havent had any major blow ups today anyway!

Waiting on the Meds

So I'm waiting on the meds to kick back in here with Kaitlyn. Today I had to run an errand to the bank and she had a huge screaming tantrum for about 20 mins because she couldnt draw some triangles right. Here I am sitting with the man at the bank in his cubicle trying to fill out a dispute form and I have a 20 month old sitting quietly playing with his mittens and a 4 1/2 yr old screaming, crying and flailing around in a chair because of her lack of ability to draw the way she wants to... oh the joys of Aspergers. I just apologized to the poor guy sitting there having to listen to that and explained that sometimes she cant get control of her emotions. Hopefully he doesnt think I'm a complete nut or what I'm SURE he was thinking... "Cant this chick control her kids in public?"

Whatever... I'm going to get a T-Shirt to wear EVERYwhere that says Proud Mother of an Asperger Kid. Then when people look at me funny during a tantrum I can just open my coat and smile! :) Let them go home and Google it!!! hahahahaha

Ok just had to get that out...

Sans Meds

So I decided to take K off the Tenex as I didn't think I was noticing much improvement... well... I admit, I was wrong! There WAS improvement on it... not much but after her being off of it a week she has been a terror. Tantrums (the long ones again), screaming fits, all around nasty behavior and not being able to control her behavior AT ALL. Maybe it has nothing to do with the meds, maybe it does... but we started her back on and will be putting her back on 1/2 pill twice a day. The past few days have me worn to the end and there are times when I want to give up... but I know, for her, I cant. She needs me even if she is treating me terribly. I love her and I will be there for her through good and bad... unconditionally.

She's also having an asthma flare up so we're doing albuterol & pulmicort in the nebulizer for a bit to try to get rid of the cough and then I think we will finish out the winter on the pulmicort once a day. She must have gotten a touch of the cold her brother had and then triggered the asthma. If she keeps coughing I'm going to take her in to have her checked out and let them help me out with the dosing in the Nebulizer... maybe she needs twice a day for a bit to get rid of the cough and yucky breathing.

Anyway... hopefully we will see an improvement in her behavior and I'm also hoping in Jan we can get her started with a private therapist, work on getting her more services through the school district and/or getting her into Crossroads so she can get some intensive treatment.

We'll just have to see how the new year will go.

Holiday Letter

Though I think this "Letter" should be rewritten for ANY time you're going to see family it really brought tears to my eyes because if Kaitlyn could, this is what she would be saying!!!

Holiday Letter
This article appeared in the holiday 1999 issue of ASAP News! (Volume 3.5) The Autism Support and Advocacy Project, and Potential Unlimited Publishing.
"Dear Family and Friends:" was written for the purpose of it being sent to relatives and hosts of holiday gatherings who might need a crash course in what to expect from their guest with autism.

"Dear Family and Friends: " I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, I am challenged by a hidden disability called Autism, or what some people refer to as a Pervasive Developmental Disorder (PDD). Autism/PDD is a neurodevelopmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see, but which make it difficult for me to adapt to my surroundings.

Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: Some may not speak, some write beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you--I am not. Rather, I am hearing everything and not knowing what is most important to respond to.

Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.

If I can not sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people--I just have to get up and move about. Please don't hold up your meal for me--go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky--I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired.

Don't be disappointed If Mom hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things--just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "self regulation," or "stimming'. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this "perseverating" which is kinda like self regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.

Please be respectful to my Mom and Dad if they let me "stim" for awhile as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents' feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support. Holidays are filled with sights sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it's very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow some social rules. I am a unique person--an interesting person. I will find my place at this Celebration that is comfortable for us all, as long as you'll try to view the world through my eyes!"

I thank, with all of my heart, whomever wrote this.

Bouncing Ball

Really this will be short... Kaitlyn was BOUNCING off the walls the entire day Christmas Eve and yesterday. I have no idea why she was acting out so badly but she was being rude and talking back and not listening. She was getting Time Outs over and over and just overall a complete mess.

Christmas morning was good, she loved all her presents.

Oh the Screaming!!!!!!!!!!!

All night... Screaming.... Screaming... SCREAMING!!! K is not feeling well and her stomach hurts but with her sensory issues (and flashbacks of reflux puking I'm sure) she cant tell if her tummy hurts to puke or poop and so all she does is SCREAM... why is that her only response to things.... SCREAMING!!!!!!!!!! AHHHHHHHH I can't take anymore tonight. I just gave her some Pepto in hopes that if it is one or the other it will take care of it and she will feel a little better and be able to go to bed and not be screaming out all night keeping her brother awake - or me for that matter.

I'm so terribly exhausted from everything these past few days and I'm barely making it to Noon before I crash from exhaustion. I'm heading to bed here in about 5 mins with the kids!

Wish us luck that this is just something she ate and she will be all better in the morning. She has dance and the Christmas Pageant rehersal at Church tomorrow! Ok off to get these guys to bed.

What a Tightly Capped Bottle!

Well we went to Long Island this past weekend and went into NY City to see the tree. There were tons of people, lights, we rode the train and the subway which were also cramped and crowded. Kaitlyn (though we know she needed to) did so good and held it all in and controlled herself so well! She was SO overstimulated but didnt want to lose control and misbehave. I'm so proud of her!! You could see she was a balloon ready to pop! She also handled having the family over Sunday morning to Grandma's like a champ. She was a little snippy and her brain was so stressed and she was a wreck inside she couldnt even think to write letters or numbers correctly. The poor girl was writing backwards because she couldnt focus! It was crazy to see her doing that. I was told the scientific reasoning behind that and it was interesting that I noticed. It's pretty much that her amygdala was getting all the blood flow and therefor there was only a little going to her hippocapmus. Yes, I've been learning about the brain lately!! lol :) Anyway, by the end of the day Sunday we finally got the tantrums we'd been waiting for. She had one in the bathroom at Grandma's for about 20 mins and then another one for about 20 mins again in the car while strapped in her carseat. She really needed those for a release but she tried so hard NOT to have them. I'm proud of her but then there are times where we can see how bad she needs to release the stress and tension and we WANT her to have a tantrum! It's all crazy!

I am going to be doing some more reading on this whole amygdala/hippocampus thing because it amazes me that I can see things in people and know whats going on and then there are scientific reasons behind what I am seeing and noticing. I really do need to be a therapist... maybe one day when I'm older and the kids are in school I can move into that profession... we'll see!