Language/PT/School

First language: Ayden Jane has become more imaginative, or maybe she can just now express her imagination. A few days ago AJ and I were out back playing and she asked me, "mom, you want to play a game?" I, of course, told her I did, although between you and me I was not too interested. Ayden Jane proceeded to ask me if I wanted to play a new game. Now I was interested. She began describing the game and making up rules and things to do. It did not make too much sense, but it was amazing to watch and listen to her create something and to be able, at least to some degree, explain what was in her head.

Next physical therapy: Jen was much happier with Ayden Jane's posture this week. (I have been too) Although the tape on her legs only lasted a couple of days, the benefits seemed to last longer. Ayden Jane had turned on the tone and pretty much kept it on. So Jen's plan was to not tape her this week and see how things went with our up coming trip... Part way into therapy, however, Ayden Jane asked her, "Jen, you brought you tape?" Jen told her she thought it was in her car and asked her through a series of questions if she wanted the tape on her and where. Ayden Jane was asking for tape on her legs. I believe this is a bit odd as Jen was surprised she would ask to be taped. Ayden Jane does seem to have a good ability to tell in her own way what she needs though. After taped, she again played with her balance a bit and gave Jen a laugh. Then she proceed to do a great job in therapy. I think my favorite was when Ayden Jane again became LOUD like she did after last weeks tape and Jen was able to witness and get a good laugh out of the tapes side effects.

So the plan for the trip this weekend is that we will leave about 12. I will take Ayden Jane to the park, bounce on our trampoline, go swimming... whatever works that morning to wear her out and be sure she is as 'on' as possible. Then she should nap at some point on the trip. About 2 1/2 to 3 hours in we will stop and stretch our legs... Then on to the last hour of the trip. We will be on a soccer field for about 2 1/2 hours so I will be sure to bring a few things for her to do. We will get dinner before heading back and it should be her bedtime by the time we are on the road again. Sunday we will know if car seat time is a major problem or if it was just the quantity and timing of the last trip that caused the problem.

Finally, school: Another student in Ayden Jane's class had a birthday this week. It came with cupcakes... for the kids. I had put some grain free mini muffins in the freezer that Ayden Jane calls cupcakes and told the teachers to give her 2 in place of whatever 'treat' was brought. I hear it went great. So far so good on that front. I have found the easiest place for problems to occur is in the liquids. I am not sure what to do about that, but I may end up sending in some almond milk too. Ayden Jane just does not really like water, okay she barely tolerates it without 'spiking' it. It is amazing how little of something I can put in it and she will be thrilled. Trying to get the teachers to understand that AJ can drink water with a dash of juice, not watered down juice. I guess I should send in a Tbs. and tell them she can have this much juice in her water. Hmmm. Just might try that!

Opening Up

Ayden Jane has always been a bit shy with strangers. Okay, truth is, Ayden Jane has never even liked strangers. When she would meet new people she would just sort of stare at them, say nothing and not respond when spoken to. Umm. Yea, I know it is rude I just can't fix it.

She has been changing on that front. She now will regularly talk to people she doesn't really know. Not right away, but if I talk to them for a few minutes, then AJ decides they must be okay. The funny part is how she tries to engage conversation. Let's just say she is not ready to be a talk show host. She has a list of questions, basically, which she will ask. Here is an example of a 'conversation' she had last night at the volleyball game with one of the other parents, AJ: "What color is your hair?" Parent, "Brown, what color is your hair?" AJ: "Brown too. What color are your eyes?" Parent: "You tell me." (showing AJ her eyes). AJ: "Your eyes brown."... This sort of interaction goes for a while and usually includes, How old are you? It is pretty hysterical and if AJ gets through all her questions, no worries, she just starts over.

She sort of went through this stage with the rest of us at home, but now her 'conversations' with us are much more complicated. I am hoping the pattern continues. She begins new language skills with us until they are mastered, then moves on to generalizing them with others. For now, I am just glad she is being polite and no longer just staring at people. Of course, it is still very awkward conversation as we have to translate most of her questions anyway. This too will improve.

Ayden Jane's other favorite thing is to tease her siblings into playing with her. Last night Kayla was doing homework on the sofa when AJ wanted her attention. (remember it has been raining!) She took Kayla's pencil and ran away with it. She brought her another one and told her, "this one works," just so Kayla would start writing and she could swipe it again and run around the corner. Repeat. Repeat... This kid cracks herself up!

Just one of those moments

Ayden Jane was getting quite rambunctious this afternoon so I figured when our neighbors picked up Mckenna for swim team practice, I would take Ayden Jane to our pool. I asked her, "Ayden Jane, would you come swimming with Mommy? I would love to have someone come swim with me." Ayden Jane answered very matter of fact, "sure. I go swim with you." We headed to find our swimin' suits and on the way Ayden Jane just blew me away. She stopped, turned, looked straight at me and said, "Mom, thank you for asking me to go swimmin' with you. I love to go swimmin' with you."

I know my big kids said adorable things when they were little, but there is just something beyond magical when Ayden Jane strings together words spoken clearly and with a sense of connection and conversation. It honestly nearly brought me to tears. I still do not really understand how communication can be so great one day... no, one moment and then not there the next. So what causes the blank stare and pause sometimes... Then other moments it as if the wall that is sometimes there is totally gone and soooo much personality comes pouring out. I guess I will just enjoy, keep working and hope that the trend of more communication and connection as time goes on continues.

Now, potty training, uggg. Ayden Jane gets the concept and does have muscle control to NOT go often but seems to have no concept of how to 'go' on demand... Basically, the problem is that she just does not pee often. She is more of a volume at very infrequent intervals kind of kid. This makes for very little practice! She will literally stay dry for hours then when she goes... no stopping it. I guess I cannot get too frustrated yet as I really have not officially started training, but I was hoping to have a couple of random successes to help us jump start the process.

Chatter...

Ayden Jane wakes up talkative most days. She was just cracking me up this morning, not so much what she says, just that she keeps on talking. Here are a few glimpses into her language.

Wakes up in her crib. AJ: Mom, get me out....

Taking Noah to school. AJ: Mom, thank you for my new shoes. (Repeat 100 times getting louder until acknowledged for 10 of them) Mom, thank you for my new purple shoes. I love my new purple shoes...

We stopped at a convenience store on the way and I sent Noah in and waited in the car with AJ. AJ: What Oah doin'? Me: getting a drink and gum. AJ: Why Oah do dat? Me: What are you doing? AJ: I sittin' in my seat belt...

We head to school to drop off Noah. Noah: Hey Ayden Jane. AJ: sup Oah. (she has been trained for that one) After Ayden Jane has pointed out every tree and flower on the way we stop at school. AJ: Oah, get outta my car. (insert grin) Noah: Bye Ayden Jane. AJ: I yuv you.

We get home. AJ: I have water in Ayden Jane's cup. A few minutes later. AJ: I play out with Sadie (the dog)

I sit down to type. AJ: Mom, Mom... look me. Mom, Mom I need play doh. Mom, Mom watch...

Yep, I think the language skills are coming!

Physical Therapy

Ayden Jane worked hard during physical therapy today. Jen put ankle weights on her and a band around her abdomen. I am not really sure what the ankle weights were for, but the belly band was to try to get those belly muscles to 'stay turned on.' We worked lots of different things from arms down through belly. Homework this week includes working more on catching balls-catching not directly on mid line, walking on the 'balance beam' in our living room (scrap plank of hard wood flooring elevated a few inches off the ground) and reaching for things in the wheel barrow position. Lucky for me, Mckenna will be more than happy to handle much of the ball and balance beam work. I just need to work in the wheelbarrow.

As for language, I think my favorite thing right now is that Ayden Jane actually has a bit of a southern accent. It comes out in the word can't. I will hear her from her car seat, "Mom, I caain't reach." Or, "I caain't get my hock (sock) on."

Speaking of socks, Ayden Jane is obsessed. She does not like to wear her own socks, likely because they are harder to get on. Or maybe just because she likes to wear everyone elses. Either way, she changes socks all day long and they look more like leg warmers. Today I picked up 17 socks in the livingroom! I cannot tell you how excited I was today when she went barefoot for a little while. She even went outside barefoot. Wooo hooo.

Two Year Old Fun

Between the times where Ayden Jane is tearing apart the house or climbing things she shouldn't or drawing on her legs or yelling IIIIII DO she is quite the goofy little one. She is very into being the center of attention and not ever being left behind.

Particularly when we are in the car, she demands center stage. When others are having a conversation she will begin with, "Ha. Ha, ha." Other favorites will be to call our names and then ask for something we don't even have in the car or just say "look me." The laughing usually works quite well as really none of us can resist laughing with her. Then her fake laughs turn into true toddler belly laughter and there is no better sound these days.

She is also quick to get the clue that someone is leaving. She will run to them and announce she is going too. Selective hearing has already begun. We don't even realize she is listening and she suddenly totally comprehends.

She is also quite the imitator. She will even imitate herself. She was calling for me from across the house and I, of course, sprinted to find her. Not. I did answer back and she found me. Once to me, she starts telling me the story of how she walked through the house calling, "Mom, where are you." It is very funny to listen to her as she 'tells' the story and she does the voice you use when you are talking quietly but sort of imitating someone yelling. So cute.

Her pretend play has also become so fun to watch. Tonight she was pulling 'Big Mick Mick', a stuffed Mickey Mouse about as big as she is, on her bike. The bike tipped and Mick Mick took a tumble. Ayden Jane put the bike upright (with appropriate grunting at how hard the work was) and then picked up Mick Mick and said, "I sorry Mick Mick. Try again. Hold tight Mick Mick..." As she proceeded to get on her bike with Mick Mick to keep him safe this time she informs me, "Bye, Mom. I be right back. I go shopping." Aaaahhhh a few moments of peace in the day. Now if I can just put the place back together again so we will be ready for tomorrows tornado.

New stuff, fun stuff

Ayden Jane came to me this morning and she was chattering on about something. She was very excited and kept repeating what she was trying to say. At first I was sort of sad that she was trying so hard but I couldn't understand her. We kept at it until she drug me into the other room to explain. Later, same scene different words. Yes, again for the third time in the day. Only now I began to look at it in a new light. I was not understanding Ayden Jane because she was using words I had no idea she even knew. She was trying to communicate more complicated ideas and she was not getting frustrated (I was but not AJ). In the end, I think a few 'big squeezes' are in order along with tons of interest from Mommy in whatever she is trying to say. Definitely one of those days where none of my 'important' tasks is as important as what is going on before my eyes in a little 2 yr. old ball of energy and wonder.

Christmas Break

We were sort of on PWS vacation over Christmas. That just means no therapies which means no therapy 'homework'. Once Ayden Jane sort of finished up her language spurt, we just played with our new toys, enjoyed having all the big kids home and hung out. Our schedule was wide open and it was good to relax. It is definitely time to get back into action though. We have really not kept track of food quantities at all, just kept up with the appropriate choices. The big kids are great with knowing what she is allowed to eat and what is off limits. They are also great about asking if it is okay to give her_____ at that particular time. They just seem to get it that I keep a running tab of about how much she is getting of fruit, protein and good fats in my head. No arguments from them. I do my best to make sure she has eaten very well (I mean quality not quantity) if I leave her with them and give them the 'easy' foods for choices to give her. So far it works well. Just seems that planning ahead is the biggest key.

We did attend a party over the holiday. I really thought that Ayden Jane would pull her shut down and observe routine. It was primarily adults and not too crowded, but there was a band and dance floor. Food was, of course, a buffet but AJ was really too distracted to care about the food. She ate one chicken finger and a slice of pork and when I thought she was heading for the cake, she just wanted to see the Christmas tree and never even noticed the cake. It only took her about 10 minutes before she was on the dance floor with about 7 other kids and she was dancing away. It was adorable! The party was for the husband of our PT (not because she is our PT, but because our families are close friends). One of the PT's that work for her was also there and remarked at how great Ayden Jane is doing. She was wondering how she could still need services! It is always so great to hear people that really know what they are saying to say how great she is doing.

We did have a 90 eval for PT this week. It was funny, because Jen asked me several questions about whether or not she could __________. They were goals we were working on before that crazy language leap. For several of them I had to say she WAS able to do it, but was NOT able during that couple of weeks. As for today? She is better than during the spurt, but has lost some skills she had obtained before it. So strange how it seems to take so much effort when obtaining new skills that her little brain just cannot keep up with everything.

Then Friday we had ST. I realized just how far that spurt took her when Nicole started with, "is she getting more consistent with 2-3 word phrases?" I chuckled and told her that we were now easily connecting 4-5 words and often using total complete sentences. Of course, Ayden Jane then proceeded to be totally quiet for the first 30 min. of therapy. UUUGGG. Actually, we sort of figured out (I think) what some of the problem is. Nicole brings new very interesting toys which would cause most kids to get excited and talk to her. Instead, Ayden Jane just gets quiet and thoroughly investigates them. She totally takes in everything receptively as I will hear her use words that were part of the 'new' therapy toy. For the last 20 minutes, Ayden Jane began to show Nicole all her Christmas toys. As she showed her and played with the familiar, she began to talk up a storm. She was telling her a story about something that happened previously, she was narrating as she played, she was telling Nicole how to do it.... We will have to work on the best way for her to work with Ayden Jane.

Ayden Jane has been hilarious lately. The new language skills have stayed and the energy/coordination has returned. She talks constantly while she is playing and you can sort of even have conversations with her. Mostly, she loves to tease and can turn nearly anything into a game.

You can still see her have trouble when she gets tired. Especially with language. She will talk fairly clearly and in complete sentences when rested and then struggle to connect 2 words when tired. Also, when she is someplace where something is 'overwhelming' or just very new. She never gets scared, at least she never shows it on the outside. She does the opposite. She just 'shut's down'. She does not talk or really show any facial expression. She becomes very still.

I guess it is just one more way that Ayden Jane seems to have reactions that are not that out of the normal realm, just more dramatic and for a longer period. It may take most 2 yr. olds 5 minutes to warm up to a new place, but it can take Ayden Jane 20+.

I will say she has demonstrated an amazing memory for places and directions. Any time we even turn toward my parents neighborhood Ayden Jane starts with, "go to boppa house? Go swim Boppa pool?" We went to Mckenna's class at the elementary school. It has nearly 1000 students, so it is fairly large. After we went 2 times, Ayden Jane can take the right turns and goes directly to Mckenna's classroom. Finally, I told Ayden Jane to get her shoes on so we could go to McDonald's for breakfast the other day. (That means apples and slides for Ayden Jane) On the way there I turned to run the trash to the dump. As soon as I started to turn she started yelling, "no momma, go to McDonald's". I think she pays more attention to where I am going than the other kids!

Christmas 2009

Merry Christmas. It was a great day, as all Christmas days are. There were lots of presents and Ayden Jane started to really get into it. The funniest part, however, was when she opened the play doh from her sister Mckenna and proceeded to plop down in the middle of the chaos to play with it. Every one climbed over her and she pushed boxes and wrapping paper out of the way to make a space. She still had several presents to open, but it was like she had been waiting her entire life for her own play doh so the world stopped for a moment.

The best Christmas present for us, though, was Ayden Jane is back to her old active self. Her new language skills are strong enough now that she is basically talking in complete sentences and active at the same time. She climbed right up on her new little tricycle and said, "watch, look I ride my bike." I was soo great to hear her and watch her and see it all come together with ease. I wonder if I will ever get to the point where I will not freak out every time we hit a bump in the road.

Down days

The past couple of days have been hard. There have just been a few reminders that Ayden Jane really does have PWS. I know that sounds odd because we have been dealing with it for a year and half now, but Ayden Jane does so great that I almost convince myself we have this thing licked.

I have loved listening to the vastly improved language skills, but the cost has been watching my lively little toddler become way more calm and uncoordinated. I know, logically, that this is just a side effect of the way she seems to develop in spurts, but it is still hard. I have even had to watch her extra closely because her body awareness has seriously slacked off. In fact, while my son was playing with her on the swing set, she took a pretty big fall. He was telling me it was weird when she fell. Like she put her hand back and had no idea where she was and that there was nothing there. She has played on that very same swing set with no problems for months!

Also, all the 'holiday' food reminds me of her food restrictions. Mckenna and I still bake cookies... but we wait for Ayden Jane to go to bed. Food this year has not really been a problem, but I see the challenges on the horizon. I am soooo not a food person, but I will need to learn to make PWS friendly treats. For me, that means treats that are grain free and not loaded with sugar. More to research, learn and create but I know it can be done. I think for now, I will just enjoy this year.