Hello? 2020

Happy NEW year! Are you out there? I'm sorry for disappearing for so long. I've started posts so many times but as the months passed writing a full update grew into an impossible task. I'd considered letting this blog slip away as times have changed and we are all overwhelmed with social media and information about each other's lives. Ultimately though I've decided I still want to share our victories. I know there are lot of us in the trenches out there and sometimes we need a reminder that the victories DO COME so let's keep at it! For Ainsley some are big, some are small, some you might barely notice if you aren't paying close attention, but they happen, and that's what motivates me to keep going!

If you have ideas for things you'd like to see me write about please post in the comments. I'm really excited for 2020 and am hoping it brings GREAT THINGS! I am open to change. I may even consider an off-shoot of this blog. Give me your ideas!

For now it seems a good place to start is right here, right now, with a focus on my work with Ainsley. I guess I'm saying I plan to write about Ainsley, what she is up to and how she is doing, more than the rest of the family.  If everyone misses hearing and seeing my big kids or seeing what we're up to around the house I may change my mind. I may even go back in time and add some posts, back dated. I'm sneaky like that. Plus I really do miss being able to use this blog as my memory of what happened when, because my actual memory is shot. But let's be real, as much as I may like to do that, I probably won't.

Since I last posted the biggest news is Ainsley turned 13! She was thrilled to get 2 new Baby Alive dolls (One is a mermaid she can take into the pool, given to her by her big sister, who paid for it herself using money she earned working as a princess for hire for birthday parties.)!  She was able to blow out the candle all by herself this year! I hope she made a big wish! So YIKES! I have 3 TEENAGERS! How did that happen?!

Ainsley had 2 surgeries (to correct a leg length discrepancy, a long story for another day). Evie graduated high school and is now at college at the UW! We are so proud of her! Both Evie and Adrian got their driver's licenses in 2019, within a week or so of each other (yes Evie is 2.5 years older she just took longer, story of her life). That has been life changing! I am thrilled not to spend so much time chauffeuring but I am terrified (and the Mini was in an accident once already). Aside from that there have been no major changes.

We are still homeschooling. Although it isn't something I ever expected to do I still believe it is the best option for Ainsley. She's been really healthy (we miss out on all those school germs) and happy (when I ask her she says she wants to keep homeschooling). The best thing is that we can "do school" in our pajamas when we want to AND she can bring all the girls. She enjoys "teaching" them.  One element of a 4 Blocks approach to literacy is independent reading. This week she chose this book about animal skeletons to "read" to her girls. If you are interested in literacy for individuals with disabilities you may want to check out the much anticipated and newly released: Comprehensive Literacy for All.

There is no question teaching someone who cannot speak to read is more challenging but research shows again and again that it can be done! AAC is an important piece of learning for a non-verbal learner.  I was thrilled this week to get this sentence 100% spontaneously and independently! It is hard to believe when we selected Ainsley's first SGD(Speech Generating Device) in 2009, when she was 3, we weren't sure she would EVER be able to use a touchscreen. Now not only does she use Proloquo2Go like a pro, she plays video games and can do pretty much anything else you can think of on her tablet! It's her favorite thing next to her dolls. Look out, when she learns to spell she might start sending you texts! Some of our family (and Evie's boyfriend) have already started receiving them! If you haven't, don't be jealous, count yourself lucky!

Also this week (Wow! I guess it was kind of a big week!) Ainsley surprised me by reading the word "see". We were working on "ee" words this week and although there were plenty simple ones she couldn't read (and let's be honest I was very frustrated) she then turned around shocked me by going down a level in her AAC device (in the look+ folder) and selecting the word see when asked to read the word off the magnet board. She was unable to read the words me, he, she, or we despite working on them for years and reviewing them earlier in the day and writing them repeatedly. It just goes to show that although learning isn't easy she can do it. She can also reliably read cat, dog and of course her name. The path may be curvy but I believe she will get there in the end.

In case you are curious how to use AAC to teach your child to read, one way that can look is like this.

Homeschooling also allows us the flexibility to work therapy and appointments into our days that we used to have to leave school for. We've been doing weekly physical therapy with a PT and similar daily exercises at home (trying our best to stick with it) as well as weekly exercises and walking at the specially heated 92 degree therapy pool. We've been using a Scuttlebutt in the pool to give Ainsley support to walk without hands. (A huge shout out to my friend Jenny for giving me the idea!) It's given Ainsley so much confidence in the pool! In addition to it she wears these 5 pound ankle weights which help keep her upright. She will easily spend two hours in the pool and I LOVE that I can relax a little because I know she's safe. (I'm still always within arms reach, except for a few seconds while filming because she's gotten SO GOOD at this since August.)

She's always been such a little fish! She has so much fun she doesn't realize how hard she is working. She packs in more strengthening into our swim days than we could ever do on land, including JUMPING! It's also a good social opportunity. So many people love seeing her each week and I think she brightens their day with her energy and enthusiasm.

She's even using goggles to learn to hold her breath and go under. It's one step closer to actual swimming. 

Although in the shallower water she does actually balance on her feet to walk (she's not just paddling) it hasn't transferred over to walking on land. Due to her Cerebellum and Pons malformation she is easily thrown off balance and lacks adequate motor planning response time to feel safe at this point. We are working to push her a little past her comfort point. Her therapist, Joe, is so patient and kind and that helps make it as fun as possible for her (she still kind of hates it). She always brings a doll and he always talks to her about it and gives her the chance to talk to him using her AAC device. As you can see here in this video she is getting so strong! 

Thursday Joe said he thinks she is ready to start working on transitioning from a walker to a single crutch (Funny she used to complain LOUDLY about the crutches and now she's thinking 2 crutches would be pretty great compared to the1.). You can see she's not thrilled about this. It's going to be some work and take some time but it would be a great option for her to have! We're trying it out in the carpeted "schoolroom" and once she's more comfortable I hope we can get her to try it around the house. She'll still use her walker outside the home or her wheelchair for long outings. We couldn't be more proud and excited. And since that is not the nicest picture of Ainsley I'll wrap up with this one.

We started out our 2020 return to homeschooling by making a list of reasons that Ainsley wants to learn to read and write. She wants to be able to send texts and type to search the internet and TV for doll videos. I made sure she knew she had the option to say no but she used her AAC system to say YES she wants to be able to read books herself. The smile looks genuine. I think she's motivated and this is her year! 

 I'm expecting great things for Ainsley in 2020! And I hope for the same for you and your family!