Sep 13, 2014

Back To School

We finished off the summer with a couple get-togethers with family and friends, Steve took Evie and Adrian to Wild Waves (a water park) and we spent a day together as a family at the Evergreen State Fair. Sadly it was a bit of a bummer summer. (Other than their week away at camp.) The only good thing about that is that the kids were ready to go back to school. Evie especially because she misses her friends and there just might be a boy she likes (a new chapter for us as parents for sure). Adrian was ecstatic to leave elementary school behind him which is a little sad, but really I was the same way as a kid. And of course Ainsley would be going back to school without her trach. So it is a huge year of change for all the kids.  But before I show you their back to school pictures and talk about how things have gone at school this past week and a half I want to share our fair pictures.

Adrian was afraid of the rides. Rightly so on the two above as you can see. Evie LOVES it. Two opposites those kids are. In 2009 we went to Disneyland and Ainsley rode all the rides with no problem. This time she didn't even want to go on the Merry-Go-Round. I had to force her.  (I'm there behind her keeping her safe.) What a let-down when you're just trying to have fun.

I thought I'd get them all to go on the Magic Carpet ride, but only Evie would go on it with me. 
We're on the far right. It was scarier than you'd think.

Later in the night I finally persuaded Adrian to go on the spinning bears. Sheesh! So in the end he went on one ride. We pulled hard, spun around as fast as we could, and he thought that was pretty cool.

He had a bit of trouble finding food to eat now that he's a vegetarian (he still hasn't had any meat since May).

What he really wanted was to win a giant donut. See them there in the back? Of course you know how difficult it is to win a prize at the fair, but since this trip to the fair was our "summer fun" we let him try. Several times and many dollars later....he didn't win one, so he was very disappointed. Strike 3.

The man at the ring toss gave Ainsley a free bucket of rings to toss and she had a blast! It didn't matter to her that she didn't get any rings on the bottles or that she didn't win a prize. But they gave her a consolation prize anyway. It was so nice of them! 

I love all the classic fair stuff, the grange displays, the canning competitions, knitting, quilting etc.but the rest of the family was less enthusiastic. Did you know there is a "mix in a jar" competition? 

Of all the animals we enjoyed the piglets the most. OMG SO CUTE! I wanted to scoop up the little brown one and take him home. Ainsley pet them as they wriggled around.

The BEST KETTLE KORN in the history of the world was consumed that night! It was so awesome that Ainsley was able to eat fair food. No tube feedings at all. She's getting stronger, and in a few months it will be a year that she's been eating pretty much fully orally!

We contemplated buying some yard art to put in the center island in front of our house.
Just kidding, but I'd love to see the neighbors' faces.

It was a fun day at the fair and a great way to end the summer.

We roasted Smores for the last time in the season. Ainsley ate 2!

Earlier in August I'd gathered most of what I needed for Evie and Adrian, ordering the last few things on-line the week before like a graphing calculator and drawing pencils. I felt fairly well prepared but it wasn't clear what Ainsley needed for supplies. The teacher sent out a last minute invite to an open house at which we were supposed to get our supply list...the Thursday before school started. The same day and time as E&A's orientation. Don't they realize they are doing us no favor by waiting until the last minute? So I had to get a bunch of stuff for Ainsley over Labor Day weekend. We did it, but it took up a good chunk of time since I also hadn't heard back from her General Education teacher. For that class I printed the general list for 2nd grade and guessed what items Ainsley would actually need. In other words, not a billion pencils, no magazine subscription money, no flash drive or headphones for netbooks etc.

I think it can be a bit of a sad time for parents of kids with special needs, when most parents are happily getting their kids ready to go back to school, posing for perfect pictures with fancy signs celebrating their grade level. When your child is different "back to school" can be a reminder of all the ways they don't fit in. I felt a bit sad thinking of how she won't need many of the items on the list, how she doesn't really care about her old backpack and lunchbox, that she can't carry it anyway, and that she will be using a wheelchair lift again this year to get on the school bus, that she still can't talk....or that she doesn't have friends to miss. And I spent the last weeks of the summer trying to get answers about whether a nurse or aide would be assisting her to that we can attempt to get her an education. Although these feelings popped up from time to time, I tried my best to feel them, acknowledge the truth of their source and then let them pass and focus on the positives. Ainsley is HAPPY. Healthy. Heading off to school without a trach. She likes school.  Then we made up two pencil boxes for her, one for each classroom, which was kind of fun.

I think it's a bit ridiculous how nowadays we are expected to provide so many supplies. When I was a kid the school provided everything we needed to learn. I'm not even sure we had a backpack.

Evie and Adrian leaving at 6:45. Poor Penny has been missing them. She's also in heat and that is no fun.

We found a bunny eating fallen grapes while we waited for Ainsley's bus.

I was so happy. We have the same bus driver. I LOVE him. For awhile I was afraid Ainsley was going to have to ride the bus alone and I felt much safer when I knew it would be Gene driving her. 

We have a little goodbye routine that we do every day, including fist bumps at the end. I LOVE this girl!

It may not be popular to admit, but I was happy as can be to see the bus drive off with my last child on it. I am glad to get back to a regular routine. I was glad to be able to take care of things that need to be taken care of without feeling guilty that I wasn't providing a fun summer break for the kids. 

Everything Ainsley does takes her a lot of effort. It wears her out. And by the time she's home from school she doesn't have a ton of energy. This day I found her in my bed, she'd climbed in and was watching her dad's Kindle under the covers. 

We'd received a 60 day extension of nursing services through the Developmental Disabilities Administration while Ainsley adjusted to life without a trach. The decannulation happened earlier than expected (July instead of August to accomodate the doctor's schedule) which meant our 60 days ended sooner in the school year than originally expected. Ainsley has had a one-on-one nurse attend school with her since she was 3. I couldn't imagine how she would function without the support. There are so many things she needs help with throughout the day. Of course trying to get answers during the summer is difficult. During the first weeks of school is hardly much better. But after many e-mails and calls we had an urgent IEP meeting with the school principal this week and were able to get a decision. The school is keeping our nurse on through the end of this school year. She agreed to work all 5 days a week, a huge increase from her usual 2. This is great since she knows Ainsley so well. Ultimately it will probably be good for Ainsley to transition to a paraeducator whose focus is on teaching Ainsley as well as keeping her safe. However since we really don't know how Ainsley is going to do during cold and flu season and there is a small chance she could end up needing to be re-trached. If that happens then I would presume our nurse would be willing to come back to do home-care. I think we'll all feel more comfortable after we see how she does the first few times she gets really sick. 

The nurse needed two days off because she had a couple things already planned so I had to attend school with Ainsley myself which I really didn't mind. Despite the loss of time to get other things done I actually really like having the opportunity to see what goes on at school and think it's good to get to know the staff. The only problem was that both days I was supposed to drive the carpool. But the other families helped me out, each taking a shift picking up the kids at 2:00. I am so lucky to be part of this carpool. Otherwise my kids would not be able to have the opportunity to attend this school.

The first day I attended with Ainsley it was awesome to see she used her communication device to ask a classmate to play with her. This was totally unprompted. She is starting to use it more and more.

I stood back quickly to take these shots of Ainsley climbing on the equipment. We've done a lot of home PT this summer and she's getting stronger.  She needs help every step of the way but it's awesome to see her able to access the playground. Pictures can be deceiving. I have to keep kids from knocking her over because they don't understand how unstable she is and that she can't get out of their way as they run around. It tugs at my heart a little. But she's having fun anyway and it's so good for her to be out there doing as much as she can. She  really doesn't seem to notice the stares on the playground, or in the lunchroom or anywhere else they happen. And I am so SO thankful for that! Several kids came up and to introduce themselves as Ainsley's friends which was really sweet. Many people tell her hello in the halls. All in all she is a valued member of the school community. 


Counting chips earned for good behavior, to spend at the class "store".

I cleaned out her desk with some anti-bacterial wipes which you can see was necessary. I wonder if there will ever come a time that I don't have to worry about germs the way you do when you have a medically fragile child. I suspect she will always be at higher risk. 

All in all I'm very excited for all three kids. Ainsley was assigned to a new classroom and many of the kids are higher functioning. I think Ainsley will thrive in the new environment. Adrian loves his new school and feels that he fits in well and is making friends. Evie is happy and I think she's going to have a great last year with these kids before heading off to high school

We bought her a smartphone the week before school started for several reasons. First she's highly motivated by it and we made up a contract that she had to agree to maintain a B in all classes, in addition it is the most effective incentive for other positive behavior since she does not want it taken away. Second it's a safety thing as this allows us to reach her and Adrian at their school which is in the next town over. Third is that now that Ainsley's trach is out and we lose our home nursing we expect Evie to babysit her, in exchange for the phone service. She is beyond thrilled and so far things have gone well and she's following the rules. Aside from that her Ipod broke a few months ago and she's been unable to listen to music which she does all.the.time. She was borrowing Adrian's a LOT and as you can imagine that was causing some problems.

Adrian has had 3 soccer games so far. He spends most of his time defending but he's hustling so hopefully scoring will come soon enough. 

We enjoyed eating our last meal of the season outside and finally made the Sangria we'd planned for earlier in the summer. I just don't know where the days went. I am looking forward to fall. We cleaned out the herb garden and I made 12 bean soup with the herb trimmings. Fall is my favorite season of all. We aren't there yet, but it's in the air and I can't wait. Next week.........I am an overnight chaperone at the middle school camp. Three nights in cabins. We'll see how I do. It might just be the best sleep I've had in years. We'll see. 

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