Jun 19, 2013


The stress and sleepless night on Sunday stressed my body and this morning I woke up with a sore throat. Then later I started sneezing, like seriously 300 times, it's miserable! As a mom of three I'm lucky I haven't peed my pants yet. If you don't know what I'm talking about just ignore that. My nose is both stuffy and runny. BUT....It has given me blogging time. Yes I know I should be napping instead but.... TODAY IS THE LAST DAY OF SCHOOL! I know many of you have been out for awhile. We have a mild climate and it still feels like summer hasn't really started. It was a 1/2 day so Evie and Adrian both brought friends home and I really can't nap until they go home.

I've been wanting to blog a bit about school so this seems like the perfect opportunity. We'll see how quickly I can put this post together.

First, let me say that Ainsley's nurse is here and so she is being well cared for while I'm in bed writing this post. And Ainsley loves the commotion of a house full of kids. Here she is bugging the girls, with Adrian's firework shooter, while they put on makeup. Yep seriously we are at that point with Evie that she likes to do that with her friends.They make music videos.
Back to Ainsley's education. In some ways we've been fortunate (it's all about perspective right?!) that Ainsley has breathing difficulties that require a tracheostomy. A tracheostomy is one of the few conditions that will get a child a nurse to attend school. The nurse is there to suction when needed, carry the equipment, monitor breathing to remove a valve or cap as needed and make sure that if the trach comes out it gets safely put back in. There have been trached children who have died at school.
In addition the nurse:
Helps with mobility (getting from A to B).
Helps with positioning (sitting standing, grabbing the walker, moving the wheelchair).
Carries her backpack and helps her with it and her coat.
Makes sure other kids don't pull on the trach.
Makes sure kids don't plow Ainsley down in the halls.
Keeps Ainsley from falling when she's trying to walk.
Helps her use the toilet.
Facilitates communication with her AAC, turns it on and off.
Interprets verbal attempts, sign and gestures.
Helps her eat snack.
Tube feeds her water bolus.
Assists with eating lunch and then tube feeds lunch.
Assists with educational goals at times (writing, cutting, gluing etc.)
Stands up for Ainsley if kids are mean to her or laugh at her.
Helps Ainsley participate in PE, music and recess.
 Acts as a pair of ears and eyes and communicates with me about Ainsley's day.
There are plenty of kids who would benefit from some additional support at school but few have one-on-one help and the trach does get Ainsley that additional support. It's really hard to imagine her going to school and not having the extra help. Many of the LC kids need help for various things and it's eye opening to attend school for a full day like I have when the nurses can't make it.
This was Ainsley's Kindergarten year which is usually a big step for kids. Ainsley has been going on the bus to a pre-school program at a local school since she was 3. Those days were about as long as a normal Kindergarten day. This year she was in the K-2 Learning Center which is a small special education class of approximately 10-12 with nearly a 3-to-1 adult/student ratio. The small class size is less overwhelming for Ainsley since she's a people watcher and gets distracted. The program is full days. Regular Kindergarten is only a few hours each day. This year Ainsley started her days in the General Education Class with the assistance of the nurse, for about 45 minutes each day.
The night before the Gen Ed teacher contacted me about Ainsley coming to their "end of year graduation".  I think perhaps the teacher thought it might be overwhelming for her because of the crowd. It made me sad when I thought about it that she really didn't get a normal Kindergarten experience and never will. And that she nearly wasn't included in the celebration. I don't know why I hadn't thought about it, that she would be going into first grade. I realized I should have been more involved. More proactive. Because now it is over.
But I put my feelings aside and took her to the party even though she couldn't participate in the same way. She had a great time and stayed for the whole thing. She didn't really notice that she didn't sing the song to the parents, that she wasn't in the pictures from their visit to the pumpkin farm or other fun things, or that she didn't form the close friendships that other kids did. 
 I walked her up to get her certificate, wearing her cap. What a proud moment!
She ate party snacks (I'm SO proud of the eating progress she made this year!) 
I was so glad she went. And glad that I made the time to go despite the last minute invitation.
The following week we had the Learning Center party. It was great to connect with the other parents and to have a chance to thank the teachers and aides who work so very hard to provide our special kids with the best education they can manage under the circumstances.

This is the para-educator who works with Ainsley and a couple of the other kids. She LOVES Ainsley which is awesome! Well everyone does, but she especially does. And she is so enthusiastic.
They break into groups and do various activities like counting, cutting, or writing etc.
They try to use her communication device to assist when possible. I hope.

Every day they send home a sheet that tells me what they worked on that day and other details. It's a great tool considering Ainsley can't really tell me about her days.

The days sure add up. School has been really good for Ainsley. She loves it.
One difficulty with having a non-verbal child is knowing what is going on in their head, or what they are capable of. Ainsley is bright in so many ways. Yet there are also times that I ask something simple that I think she knows, that we have worked on a lot, like colors and she will still answer wrong.
That's why I was so shocked when in May she came home with an addition worksheet that the aide said she completed 100% accurately and 100% independently. Basically they taught touch counting and Ainsley circled the correct answer to all the problems. It was cut in halves, there were 10 problems.
I'm skeptical. But want to believe she is as smart as they think she is. And that there was no guidance. Like saying "Hm." when she was about to circle the wrong answer. She picks up on that. I've seen it over and over when I work with her.
It's hard to tell when she is so limited by the physical effects of the Cerebellar Hypoplasia.  
And yet she really wants to do everything everyone else does. 
And sometimes she catches on to things really quickly. Mostly when you'd rather she doesn't.
I've come to learn that only time will tell what she is capable of and what her future holds.
So we do our best to provide what she needs in all the different areas she needs help and support.
We don't do it perfectly. Ever. It is a struggle to meet everyones needs. In fact most of the time I feel like we are failing her. Other times I think the best thing we can do would be to just love her and let her be who she will be. But she is making little inchstones of progress. So we celebrate those.  

We tried a special pencil (Penagain Twist and Write) but found she prefers the "Big Dippers". Her grasp has improved even if her A still looks like an H.

She tries. And that is what is so awesome about Ainsley. And here is another picture and it shows how much more Ainsley has been using her eyelid "slings" to open her lids. Saturday marked one year post-surgery from her last and final ptosis surgery.  Read more about this here.  We are going to do a lot of writing work this summer.

I loved the art projects that she brought home.

I can see signs of help but I'm still proud of how far she's come.

She did learn to make circles this year.

Some more projects.

She has gotten physically stronger.
She's been using a walker to get around. Sometimes a gait belt (You can see the nurse had it on her here. It's a new one that quick releases and it's so much easier to use.). Thankfully the places she needs to go are mostly close to each other which makes it possible.
Remember this video?

 She's progressed so much that we've now had it written into her IEP that she will transfer using furniture and the walls to further build her walking skills. This summer she'll be riding her new bike and walking in her walker in our yard. We will also continue the leg stretching and hippotherapy.

She was able to participate in recess. 
With help of course, to keep her safe.
She participates as best she can in PE, music and library.
It's really been a great year for her. And all the kids.
I was happy to find out Ainsley will have the same special ed teacher next year and probably the same aide. If we keep the trach, depending on how things play out, we will have the same nurses as well. Continuity is good, in my opinion.
Evie is SO excited about getting into the special Arts school. Once again I will have 3 kids in 3 schools and it will be even harder but for now I'm not going to think about it and just enjoy the summer until September comes.
Here are the excited kiddos ready to start their summer fun!!!!


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