14 Years

2020 has not quite been what I expected. After Covid 19 hit in March blogging just didn't feel right. It's been such a tough time for so many people in so many ways. 

Our family has been doing well, all things considered. We've been keeping very isolated for Ainsley's protection since her airway is still somewhat compromised due to scar tissue above her vocal cords and she already depends on CPAP for sleep. Respiratory viruses are risky for her, Covid especially.

Since I lasted posted Steve started working from home. We are so fortunate that he has a job that is conducive to that. He's adjusted to working at home and is tolerant of me pestering him throughout the day. I think he generally likes working from his "man cave" in the garage, except for the odd occasions when he's in a meeting and the garage door opens. It is nice that he's no longer late for dinner.

Evie was enjoying life in a dorm at the University of Washington but moved back home in April. Not knowing how things would be, come fall, she signed a lease for a house with friends on Greek Row. In September, rather than break the lease we moved her in. Although her learning is all remote it's good for her to be able to live more of a college life. She has more freedom than if she were living at home, due to precautions we have to take to protect Ainsley. You probably know Evie loves working as a princess for hire at kids' parties. Like everyone she had to adapt her work when social distancing was put in place. She made some video recordings for kids that were posted on websites so it wasn't uncommon to see her setup with a video-camera and lighting in full costume. Now that restrictions have eased up a bit she's worked a few parties like here as Ariel recently where she was happy not to have to wear the sea-shell bra. Her work problems are not quite typical.  She also spent a lot of time sewing and making costumes.

Adrian's school was closed back in March and and several events for him were cancelled, one after another: the State Thespian Conference trip, the Ballyhoo show of Spelling Bee, the Spring RHS show, and even the Jazz Choir trip to Disneyland. He is enrolled in the Running Start program and will be "attending" Bellevue College for his Senior Year. He went from a mid year Junior to never going back to High School! We hope things will improve enough that there will be graduations and proms this year but only time will tell. During Covid Adrian has been keeping himself busy playing board games with his dad, experimenting with new hairstyles (no better time, I'd say), playing video games and teaching himself Japanese(Kanji).

Not a whole lot has changed for Ainsley since Covid as we were already homeschooling. I was very thankful not to be making that transition during these stressful times! We did stop going to Physical Therapy and our weekly pool therapy. Ainsley's favorite thing about homeschooling is being able to wear her pajamas and bring her dolls. She likes to teach them and I find it motivates her and helps keep things fun. She "reads" to them, writes on scraps of paper and pretends that it's their lessons. I know she misses being out in the community but her health has to be our top priority. 

Recently we harvested grapes from our vine. Ainsley helped and learned to separate the good from the bad before we turned them into raisins for baking. She had a great time with her "girls" as they pretended to be pressing grapes for wine, which was a bit of an ode to Grandpa Todd's wine making painting from his days as Barrel Master at Chateau St. Michele. Sadly he passed away suddenly in July. He was so loved, and will forever be missed!

We ate and processed SO MANY grapes! We filled this bucket twice.

Ainsley made sure all the dolls tasted the delicious grapes.

Making our own raisins was definitely a learning process!

The girls also join us for reading time and even our phonics work with flashcards. Ainsley is now reading about 20 words by sight. It's slow, but still progress! 

We've been working extra hard on exercises. Although it was sad to have to discontinue therapy she has made impressive gains in the past several months. If we walk behind her she will take steps independently from point A to B. We have increased the distance gradually and sometimes she can even make it across the bedroom without falling. Most of the time though she will fall back and we catch her before she gets hurt.  For those of you who may not know I think it will be a BIG surprise. This day she did especially well and I am so excited to show you!

I am posting this on the eve of Ainsley's 14th Birthday. I am in the hospital blogging and it brings back memories though this time I am not here for Ainsley but for my mom. She had a hemorrhagic stroke but received quick treatment and is doing quite well, considering. Caring for Ainsley all these years has made me strangely well prepared to be the person to manage a medical crisis. It has been a crazy 14 years with this amazing girl (young lady, really) but boy do we love her! I think she's going to continue to amaze us, that is for sure!

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!