Swimming = Sanity

Ayden Jane has been so out of control lately. Not really in a disobedient way, in a just cannot really control her little body way. (see previous post) So yesterday I went to pick her up from school and she announced as she climbed in the car, "Mom, can we go to the beach and the pool? I just need to go swimming."

Hmmm. I was pretty sure the water would be cold after all the rainy weather we have been having, but the sun was shining and I just decided the risk of it lasting 10 seconds was way better than the ensuing battle of trying to convince her it would be too cold. It was AWESOME. Ayden Jane jumped waves, played ring around the rosie... for at least 30 minutes before she announced that she wanted to go to the pool. Off we went and the pool was surprisingly not freezing as well. (I hesitate to call it warm) She wanted me to stand way out in the water and she swam back and forth, back and forth... Whew!

After we got home, she played calmly with her toys. She had great task attention. She was speaking clearly in complete sentences without stuttering. It was night and day. I don't feel like I can describe the difference with near enough magnitude. Gary and I just kept staring at her and each other. It was like a different child. The storm that had been raging inside of her was calm. She was in complete control of her body. Bizarre, awesome, miraculous. Those words touch on it.

Needless to say, we are working on an indoor pool for this winter!

Happy Birthday Eve

What a difference a year makes. It is hard to believe that last year as Ayden Jane's birthday was arriving, I was planning our departure from early intervention and 'hoping for the best' with preschool. Ayden Jane did not really understand what a birthday was all about and it took days to get her to answer that she was 3 when asked how old she was. She did not really speak to anyone outside our immediate family or circle of therapists. Little did I know that she was going to come out of that little shell and just, be an incredible 3 year old.

So, tomorrow is her birthday. It sort of started to build this week bringing snack to school all week. It sounds crazy, but AJ had so much fun picking out a snack for her friends all week even though she could not eat them. I told her it was her birthday week so we got to bring snack. The first day she said, "my friends like pretzels mom, lets bring those." I went with it. Each morning on the way to school we would stop and pick up a snack for the class. She was so excited and she would carry it in each day so proud of how happy she would make her friends. It never bothered her in the least that she would not be eating what she brought for them. Today it hit fever pitch with bringing in 'cupcake muffins' as she calls them. They are just nut butter muffins with some dark chocolate chips. Her class sang happy birthday to her and she loved it.

Just as she woke up today, Jen brought her crew by and gave her a present and played outside with her. Then a card came in the mail from her grandparents in Texas. It, of course, had money in it so we went ahead and hit the toy store! The excitement was out of control!! Then off to the homecoming parade and football game.

Tomorrow, my parents and our family will celebrate with chocolate covered strawberries and of course more presents (Ala grandparents) and then off to the soccer fields. I will fill you in on the birthday girl tomorrow!

Sensory Craze

Ayden Jane seems to be at it again. Lots of showers because we are itchy. Lots of running around nakey. Lots of emotion, sort of like just feeling EVERYTHING really STRONGLY. Attention span of a flea for playing with toys. Lots of climbing on the rest of us looking for touches and wrestling. Lots of volume. One day loads of sleeping, the next day NO sleeping. One day refusing food for looooong periods, the next day eating very well. Potty accidents. Laughter followed by tears followed by yelling followed by laughter... EVERYTHING is a conversation of why's... Somethings in that little brain and body are over firing and others can't get going.

I can't imagine what it must be like to be in there.

I talked to Jen about it yesterday during PT. I feel like she is just taking in so much right now she just cannot process it all. I was thinking school and just development. Jen added the orthotics to the list. It just seems for AJ, little adjustments make big changes. This is good because she is very capable of learning and adapting and responding to therapy. It is challenging because sometimes she just cannot handle the amount of change.

So, what did we learn in therapy? Her legs look fantastic! The orthotics are doing a great job. Jen feels her legs look more toned and her form when running is almost athletic looking.

Sad to say, her upper body is in disarray. Jen is not worried, so neither am I, but the belly is hanging and the left shoulder rotating backwards when she is statically standing. Apparently, (per Jen) she looks great in the way that she is shifting her weight something, something... (She loses me sometimes) when coactive.

Her left arm is an enigma. When it works with the right arm, like picking up a ball, climbing... It is strong and useful. However, in isolation, she cannot figure out how to fire the muscles there. BIZARRE!!! We inhibited (strapped down) her right are and had her take a bean bag in her left had and do what is equivalent to a bicep curl with it. She could not make it happen. Totally neurological. We know the strength is there. After working with her she could do it, but the concentration required was astounding.

Homework this week? Use lefty as much as humanly possible.

Thinking

Ayden Jane's 4th birthday is coming in a week. It is causing me to think. Too much probably, but I have yet to figure out how to turn off my brain. As one year is closing and a new one is opening, I cannot help but think about expectations vs realities of all things AJ.

There was pregnancy with all the dreams of what the child may look like or be like. The only questions in our heads were along the lines of will she like music and art or sports. Will she be stubborn and strong willed or easy going. Will she look like her brother or sister... Somehow, will she have a rare genetic disorder did not slip into our thinking.

Those dreams and expectations were buried deep when crisis time arrived after birth. Then came diagnosis and we had a new list of expectations forced on us. None of them good. None of them were on our list of dreams for our precious child.

As the years pass, the challenges and concerns change. Reflecting on the past year is awesome because I can see the challenges we have conquered. I can see how few of the things on that list we were given at diagnosis are reality. I can see the amazing things Ayden Jane can do and I can hear so much of what goes on in that little head of hers. It is definitely time to celebrate the hard fought achievements.

Then I look forward. New challenges. New territory. Based on past experience, I have every reason to think that we will rise to those challenges, but honestly there is a part of my brain that struggles with believing that. I think that is the most exhausting part for me about raising Ayden Jane. Heading into each phase of development with a gather all the forces attack mode. The feeling of always being on guard and afraid if I don't keep my eyes peeled we will fall of the track and not be able to find our way back.

Ayden Jane has PWS so she is a special needs child. She has PT and ST and therapeutic horseback riding. She has way too many doctors... But when she is at school, she is just another kid in Bee's Three's. She blends in and looks to everyone else as a typical kid. I know that is AWESOME! But it also makes me constantly feel like I am not in either camp. I'm not really a special needs mom, my kid doesn't actually even qualify as developmentally delayed! I am definitely not as foot loose and fancy free as the mom's of the other kids. I need to encourage AJ to spread her wings and protect her at the same time.

I guess I need to enjoy this birthday week coming and choose to celebrate all that she has accomplished from 3 to 4. I will have a the whole year of being 4 to attack those challenges. I know Ayden Jane can handle it and as long as she keeps working so hard, how can I let exhaustion set in. Go AJ go.

Friends

Ayden Jane has done a great job at school. She is hilarious at home. She has a terrific little personality. She is active and adorable and her speech is getting more clear. Still, the nuances of making friends are difficult. I see some of the other little kids in her class clearly having some friendships. Of course, not all of them... Ayden Jane has seen her classmates out and about in town and she has no idea what to do with them. It is hard to put a finger on.

Huge changes are afoot in this area. The other day we were at McDonalds (yes, but honestly she only eats the apples!) playing in the play place. A set of twins from her class were there and she went and really played with them. I mean, reciprocal conversations... It was the coolest thing I have seen!

This past weekend at the soccer tournament Ayden Jane played a lot with her friend Lilah. Yes, her friend. Lilah is Jen's (PT) youngest daughter and she is just a few weeks younger than Ayden Jane. So she is a friend because our families are friends. Many times we have gone to the playground or zoo or where ever together and the girls have played near each other. Lilah is definitely ready to form friendships and very capable of pretty much everything. It was so cute to hear her ask AJ to play with her. She wanted to play tag and hide and seek.... It took a little doing, but AJ did pretty well with it all.

In the end, I think all of us, whether our kids have added challenges or are as gifted as the day is long, mostly just want them to be happy. To have good friends who truly accept them for who they are. Just seeing glimpses of Ayden Jane being able to play games and converse WITH her friends makes my heart happy.

Sadie

Sadie is our dog. We originally got Sadie because Mckenna was a so into animals when she was little. All the babies handed down by Kayla we left nakey, in a pile in the closet while the animals wore clothes and went everywhere with us. We had sort of promised a dog to the older kids too so we figured the time was right. You know, a dog for them to grow up with that would not necessarily be around super long after the house was kid free.

Sadie is an English Springer Spaniel. She is a GREAT dog. As it turns out though, Ayden Jane is the one who is sooooo attached to the dog. AJ feeds her and gives her water everyday. She also walks around the yard collecting sticks for Sadie. I know it is a little weird, but the dog does chew on them from time to time. AJ asks if Sadie loves her, which of course just means she wants me to tell her how much Sadie loves her... I don't know what it is between them, but it is awesome.

Problem is, Sadie is sick. We took her to the vet yesterday and they kept her overnight. She is still there. Ayden Jane spent yesterday telling me she was sick. She told her teachers at school she was sick with a fever, just like Sadie. At horses last night she kept asking me if Sadie would be home when we got back. She kept asking because she was hoping I would say yes...

At bed time Ayden Jane was worried about Sadie. She wanted to know how she would sleep and who was taking care of her. On the way to school this morning she wanted to know if we were going to get Sadie before we went to school. Amazing how much she thinks about her and misses her.

So how is Sadie? Well, she will be staying another day. Vet can't figure out what is up but she has been cleared for the big nasty things you worry about. Her fever is down and her white cell count is improving.

I am going to take Ayden Jane by the vets office on our way home from school in a bit. Maybe it will perk Sadie up and help Ayden Jane not worry so much. I do know that they have to figure this out because those 2 were just meant to grow up together.

Stuff

We had a great soccer weekend. Mckenna is awesome and had a great time. She played with her whole heart and is doing a great job hanging with the boys. Ayden Jane loved the playground at the fields so it was a win all the way around. AJ would climb the rock wall, cross the bouncy bridge and slide her little heart out for about an hour before the game. Then during the games she ate some pistachios or almonds, played nearby or (usually for the last 15-20 min. of the game) climb all over me.

Ayden Jane officially does not sleep well in cars or in hotels! We left about 5:30 am and she barely slept 45 min. of the 4 hour drive. No nap all day through 2 games and about 3 hours total on the playground. At bed time she managed to fall asleep about 9 and was ready to go by 4 am!! Ugg. I just told her it was not time to get up and after a few tears she fell back to sleep til about 6:30. You would think that she would have slept the whole way home after another full day of outdoor play but, you guessed it. 45 min. to an hour.

I psych myself out sometimes before I travel with Ayden Jane. Not sure if it is the food, gh/supplements, the nonstop talking needing attention in the car, potty issues (see below) or maybe just the combination. When it is over, I am always amazed and how great AJ does. We just figure it out as we go and, of course, I know what things to bring with us to help.

Potty issue. Ayden Jane was out right scared of the pottys at the soccer field. Now that may conjure up visions of nasty out houses, but actually it was quite the opposite. They had brand new automatic toilets. Problem was that the bathroom was big and a bit echoy. That's enough to overwhelm AJ's sensory system and make it hard to concentrate. Add to that, the potty keeps flushing every time she moves and it is loud! I had plans the first day for between games, but it was so bad that we had to go check into our hotel. Ayden Jane's little bladder just grew and grew... She told me she needed to go and was unsuccessful 3 times. Uggg! Once in our hotel room, she settled down and we just ignored her as she went into the potty. I found another potty the next day at the field that was just a 2 seater. It was calmer ect. and problem solved! Weird how these things pop up along the way.

Probably most amazing to me is that on Monday, I was exhausted. Mckenna called from school and she was so tired she couldn't even make it through the day. Ayden Jane? Hit the ground running and has had a GREAT week so far. The more AJ and I hang out the more I think she truly does better with ridiculous amounts of activity. I feel like I spend my days trying to wear her out so that the next day is a great one. I guess her sensory system needs all the input and somehow her metabolism is 'set' best that way as well. Not sure how many years I can keep this up, but I definitely see swimming and long distance running in her future. Hmmm. Maybe a triathlete? That would be fun!