Friday, August 21, 2015

Second Grade!!

Not the greatest picture but here she is. She is all set for second grade!! New backpack, new lunch box, new glasses, and of course, new shoes - without 'yellows!"

Ayden Jane had a great first couple of days. As I type, she is sacked out on the sofa because going back to school was exhausting! It will be a challenge to have school, after school activities, homework and time to play with her friends!

As far as school goes, she is in a regular second grade classroom. She will be pulled out to work on OT skills but other than that she is typical second grader. She does have an IEP, primarily so that she can receive OT, but also as a back up plan for her deficit - writing skills.

The plan with her teacher now is to just expect her to put in the extra work and effort to do all the same work as the other kids. At the same time, on things like homework, I can alter assignments a bit because, let's be honest, she NEEDS to do the activities like swim team and horses ect. So the plan is that we need to turn in homework every night but on things like - write a sentence with each spelling word, I can sometimes let her dictate some of them. Or when she needs to write her spelling words 3x's each, she can do some of the practice in shaving cream and I can just note the paper she turns in. We will see how it goes.

Ayden Jane has a friend sitting next to her. He is a boy she has known a long time and is super comfortable with (sort of like a brother or cousin type friendship). She doesn't need a lot of help, but gets frustrated when she can't open things or flip through things fast enough to keep up. She has informed me she really likes sitting by C. I guess it is always good to know the kid next to you has your back.

Her class has 10 boys and 7 girls and she goes to recess with a few of her friends from last year. All in all, I'd say she is ready for a great year and to meet some high expectations. I figure I might as well expect her to meet the high expectations because if I don't she will just surprise me.

Sunday, August 9, 2015

She is Different

This post is one of those that is rattling around in my head. Parts of it are clear and parts of it make me feel awkward. Here we go anyway.

A couple days ago I was at Shriner's Hospital for Children with Ayden Jane for her scoliosis check. It was awesome. Her curve is measuring 8 degrees but the doc was very impressed with the progression of Ayden Jane's x-rays (honestly, he lost me in that conversation).  He was very surprised by her tone and improvement in her core. He asked what we have been doing and Ayden Jane piped up that she works hard with Mrs. Jen to keep her body strong and straight. I told him she swims, rides horses and we have added running. He was very interested in the story of how things started after the winter she lost her tone and the right leg seeming to be the key. I think he and Jen would have a great conversation about it all.

What really surprised me was after we finished the orthopedic talk, he asked me, "What else are you doing because I have had many patients with Prader-Willi Syndrome over the years and she is different." It took me back a bit for a minute. Usually, I hear she is doing great and is on the mild end of the spectrum....  His simple statement and later expansion to include, "she is not just mild PWS, there is nothing about her that presents as PWS. She is different."

That phrase just keeps rolling around in my head. It still jolts me a little. I mean, I know Ayden Jane is doing fabulously right now but to me, she is just a kid who has worked hard but still fights PWS. It makes me thrilled to hear and at the same time breaks my heart for others. I mean, if she is different - then how do others shift from PWS to different. I mean if she is mild, then others can sort of slide down the spectrum and join her. What does it mean if she is different? Is there a track to jump? How exactly did we make the leap?

It was fabulous confirmation of all we have done over the years. Sometimes I wonder if the time and effort and financial sacrifice of staying home to sort all of this out over the years was worth it. I start to get on myself about how I should really have been able to find some sort of work to fit in with it all to ease the pressures. In the end, I know that God has His hand all over this. I pray for wisdom as I tweak things with AJ and as I attempt to help families who are a few years behind us on this path. I pray that God will use us as He sees fit and I am doing my best to trust Him to guide our next step.

She is different. It will echo with me for a while as I try to understand the full extent of that simple statement.

Saturday, August 1, 2015


I watched Ayden Jane play at the beach today. More specifically, I watched her work crazy hard to keep up with twins one year older (who are very athletic). She rode boogie boards with them. The waves were big and the current strong but she kept at it. She was a part of the gang and she was very happy to be with them.

In the water she can hold her own. Then they decided to play a beach tennis sort of game. Um, racket sports and Ayden Jane do not get along. The kids were so kind to her. She took turns and tried. The boy did his best to teach her and was so patient but it was obvious that Ayden Jane was not coordinated enough.

As I watched, I was incredibly proud of and in awe of her, and at the same time felt sad for her. It's a strange thing to watch her join in with other kids. Well, to be honest, these kids are typical born and raised beach kids so keeping up with them in the water is really rough. But that aside, watching her attitude as she is fearless to try. Not just try to keep up with the boogie boarding because she is pretty good at that but to continue to try to play the tennis game. She does not get upset or angry when she can't do it. She doesn't get embarrassed that it is hard for her to do. She just keeps trying her best and is thankful to be a part. (okay, I'm pretty sure she didn't realize that she was terrible, but that may be her greatest gift)

So I watch in awe as she is so incredibly happy to just plug away and be a part even though it takes tremendous effort. I wait for her to get frustrated. I think she will soon tire of not being able to do new things the first time. I couldn't be more wrong ... for now.

I pray she will always have the innate confidence to try new things and join in with new kids.  Along with that, however, I pray she will continue to find kind children. We have been blessed so far. She has stumbled across mostly all patient children who have been very kind to her. She feels like the pool, which is a vacation spot in the summer, is her own personal endless sea of new friends to be made. She talked a crew of 4 cousin's she met at the pool visiting from another state into playing a game with her. She plays fair, doesn't complain when she gets caught or is it and smiles the whole time.

I still wish things came easier and she was truly good at some things, but I need to learn from her that the joy really is in just playing the game. Being the best or winning is not really a concern.