Stubborn Streak

Let's see Wednesday this week we had PT. Jen thought that Ayden Jane felt great and was combining skills beautifully. Her attention span was great and she was not easily frustrated. She was goofy and fun and cooperative. Then came Friday.

Friday brought ST with Nicole. Now Ayden Jane tends to give Nicole a more difficult time in general I think partially because she just finds movement more fun than communication. I told her Nicole was coming and she was excited, but it was all down hill after that. (Of course the lack of napping - see below- was likely part of the problem) She just became completely stubborn. Nicole showed her a picture card and asked her to say the word. Ayden Jane told her, 'all done cards'. We pushed her, tried to bribe her with stickers... There was just no way she was doing it. We did give up eventually and she proceeded to play with some animals she likes, but still was not really talking to Nicole. So what do you do when your kid won't talk to the speech therapist?

Napping. Well, Ayden Jane has decided that since she is approaching 2 1/2 she no longer needs a nap. She is wrong. Unfortunately she is also very stubborn about making this point and will find ways to keep herself awake. She would not even fall asleep for a few minutes in the car this week! When tired, Ayden Jane's speech is harder to understand and her patience with us is very small. Bad combination. At least she sleeps well at night.

I have to be honest in that I do like the stubborn, independent streak in Ayden Jane. She will likely need it down the road, but there are days...

Now what

I sort of have that 'now what' feeling . The marathon and fundraising... is over. I am guessing the lack of an actual race and finish line is adding to the feeling. I don't do well with that sort of feeling, so I have moved on to tackle food and sensory integration. Food and cooking I am NOT looking forward to, but I really enjoy the sensory stuff. So why? What am I attempting?

Food. Ayden Jane needs all the right food and none of the 'wrong' food. It seems that a diet much like the paleo diet with no grains serves her well. I am heading down 2 paths with food. One is to turn my diet into Ayden Jane's diet. One reason for this path is that the more I read, the more I am convinced it is the best diet for anyone. Secondly, it just makes me feel like a hypocrite to ask her to stay away from all the cereals, crackers, cakes, cookies, candy... and then eat it myself. Not that I am expecting to be perfect mind you, but I need to do a whole lot better. Now, while training for the marathon I ate EVERYTHING in sight so it was not the time. The other thing I am looking to do food wise should be a natural outpouring of the first. I need to learn to cook. I think if I do not allow myself the convenience of processed foods to eat, I will more likely learn to find things that Ayden Jane can eat long term. I am hoping I will even find sort of alternatives for some things like ice cream... As I experiment and learn, I will let you know. As for now, I am in the reading books stage.

Sensory Stuff. Our kids with PWS seem to very frequently have some neurological glitches with sensory processing. There have been times I have posted some of our experiences but I am reading more books which will hopefully give me lots of good ideas to keep that little sensory system developing. I just have that momma feel that this is a key area for Ayden Jane long term. It seems to effect her mood, skill development, language development, confidence... I need a better understanding of the theory and reasoning behind it coupled with some ideas in my arsenal and I think we will have a great time this spring.

Marathon and Snow

Well, the unbelievable happened. It snowed in Myrtle Beach and cancelled the marathon. I ran what I could anyway, dodging slush and increasing traffic in honor of all our kids and all the support from the great folks out there who care about them. I finished the last few miles this evening. Honestly, I am really disappointed and now I know I will give it a try again next year. It can't snow 2 years in a row! The last time it snowed here was in 2000! Ayden Jane did NOT like the snow at first. She got into it for a little while, but could easily have done without it. Here are some pictures of our day.

I will continue to wear my shirt and keep on running until next year!!

(Below.) Where did Mommy go? Running again?

Valentines

Ayden Jane was so cute this morning as we were getting ready for school. Now school for her is once a week in a mom's morning out program where she will go to preschool next year. She had an armful of 'babies'. She is not attached to any particular one, and her gang of babies nearly always includes Mickey mouse and Tigger or some other animal. Anyway, I was attempting to get her out the door to school and wanted to avoid the inevitable question, "babies go to school?" So I cut her off at the pass. I told her to put her babies down for a nap so she could go to school. Off she went on her mission to put about 8-10 'babies' down for a nap in my bed. She carefully tucked them all in and told them to be good and go to sleep. Then we almost made it out the door when she turned and ran back. She climbed up on the bed to give the babies kisses. It was precious. She hopped down and told me in her very important voice, "let's go Mom. I big. I go to school. I like school."

It was wonderful. It was just like most every other house with a 2 yr old. Life was good.

We arrived at school and as I was feeling so great about how smooth everything seems to be going. Then I noticed all the kids coming in with valentines and candy and cupcakes.... Oh yeah. Class parties. It will be interesting next year. Her teacher told me that they were not doing any special snacks for her group so I was in the clear for today. Still... That dark cloud of 'fear' began to return.

When I returned to pick up Ayden Jane, she greeted me with excitement and an adorable Valentine she had made with her hand prints. Then she had to show me the tunnels they played in and try to sing the song they sang.... Yep. It will all be just fine. We will figure out ways to deal with the junk food and Ayden Jane will continue to grow and learn and be filled with joy and wonder from it all.

I think in the beginning the dark cloud loomed large over our days and nights almost continuously. Over time the cloud begins to break up or lighten up. Sun begins to peak through for periods of time. I look forward to the time when sunny skies and cloud free days out number the cloudy ones.

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.

Mckenna

Okay, so I know the point of this blog is to keep you all up on Ayden Jane and the challenges of PWS... I couldn't resist this one though. Mckenna (8) gets in the car today as I picked her up from school and starts the conversation with, "well, I guess karate sure comes in handy." I was almost afraid to ask, but I did. "there is this kid, he is supposed to be in 4th grade but he failed and he is sort of a bully. He has been picking on _______ and ________. Today he jacked them up against a wall, so I pinned him so they could get away." Now, first you have to understand that in Mckenna's top 10 list of best friends, maybe 2 are girls. The two she was referring to are not. After some more questioning, I discovered that the boys who were having trouble did tell the teacher and the bully did receive detention... I do not think that anything serious was going on, but I did find it funny when I asked her if the bully ever bothered her, she said, "he started to a little, but trust me, he doesn't mess with me any more." Now part of me wants to tell her to keep her hands to herself and not get into trouble, but a bigger part of me thinks she is doing great. I think Ayden Jane will be well protected.

Just for Fun

So lately Ayden Jane just cracks us up. She love to tease and much to my frustration some days, run the opposite direction from where we want her to go. She repeats everything we say. Well, everything we wish she wouldn't catch us saying anyway. She is also attempting to take over the family. Here are just a couple of moments in our day with Ayden Jane.

Mornings. Ayden Jane is quite sure she is in charge in the morning. She wakes up all 3 big kids by marching in there rooms and announcing, "wake up _______. Rise and Shine." Then the dog gets the boot. "Sadie out. Let's go, Sadie out." She follows her initial rounds up with checking on everyone. When it is time to head for the door she is the coat police. She will say things like, "Mckenna, coat on. Mckenna zippy." Do not even try to get past her without zipping your coat. When she is satisfied all are properly ready, then she will make sure everyone heads out to the car. She says her good byes to all as they get out of the car and then makes sure I know it is time for breakfast.

We were at the doctors office yesterday with my oldest daughter. Ayden Jane was just entertaining herself and decided the man next to her in the waiting room would like to 'make faces' with her. She grinned and tipped her head. He responded... Then she was playing with Mckenna and was cracking herself up. She would do something goofy to Mckenna then turn and look at Kayla and I and do a sort of silent belly laugh with full facial expression. We couldn't help but laugh which was, of course, all the motivation she needed to keep on going!

Ayden Jane is addicted to her shoes. She has bright pink crocs which also happen to be the same shoes her friend Lilah has. Ayden Jane calls them her 'Lilah shoes'. She can put them on herself, which also means she can take them off herself. It is about 50-50 whether they will be on the right feet. If you try to help her put them on you will be met with a very loud, "IIIII do." She is so attached to the shoes she even sleeps with them on. In fact, she has been known to take off all her clothes, (another favorite activity) and then put the shoes back on. It seems they are the only essential item in her wardrobe.

Well, marathon training calls. Only 10 more days!