March Bluebonnets in Ennis, Texas

Back in March Caleigh and I drove down to Ennis, Texas with Grammie to see the spectacle that is the Texas Bluebonnets. I remember going at least once when I was a kid, but I haven't been in probably twenty years or more. This was definitely something that I wanted to show Caleigh and of course I wanted to get the obligatory photo with the state flower. 

The town of Ennis has some pretty great "trails" that are basically back country roads. The visitor's center in town provides maps and hints to the best spots if you stop in before you get started. 

The first thing that struck me was the overwhelming smell the bluebonnets provided. The moment I took it in, I was traveling back in time to hanging out with my Pawpaw at the flower shop that he worked at. The smell of true fresh flowers in the thousands is breathtaking. 

We went on a weekday which I highly recommend. We also went a few days after the Bluebonnet festival which was another good move. 

Mom's from all over are plopping their unsuspecting infants, toddlers and willing children in the flowers for photos to treasure forever. That being said, it gets crowded. 

If you never want to look at bluebonnet photos the same again I suggest you look at the Pooping on Bluebonnets tumblr. Luckily for us Caleigh's wheelchair avoids this situation. 

There are generous land owners that have offered up their fields for this phenomenon. 

This was a fun, allergy filled day. We got the shots, the smell and the memories that we were after. I think we will definitely make the trip again.  

Upsee - The Review

The Upsee.... yes, we belonged to the craze of special needs parents that drooled over each video and article leading up to the release. We woke up early on the first day of ordering, spent our $499 and then patiently waited for the harness like device that would change our child's life. 

Think of the craziness that ensues every time there is a new iPhone coming out. That's the type of camping out, line around the building, I have to get one mentality that took over when it came to the Upsee. 

The day it was delivered we had a total of fifteen minutes to strap it on, waddle to the backyard, take a photo and then we were out the door on to our next appointment. 

Over the past few weeks we have taken the Upsee to birthday parties, occupational therapy and worn it around the house. 

I've waited awhile to write a post on our experiences. This is mostly because there are so many other parents out there waiting and wondering if the Upsee would be right for them. I wanted to get this right. 

The instructions state that the child's shoulders don't need to be above your navel. I'm assuming this is a balance issue. I'm 5 feet tall and Caleigh is still short enough that this isn't an issue.

I ordered a medium vest and a large sandal. The vest fits really well with some room to grow. We plan to order the large vest when she outgrows the medium. Caleigh is currently 40 inches tall and 36 pounds. The large sandals are perfect for mine and Caleigh's feet. Eric hasn't tried the Upsee because his size 14 shoes are too large to fit in the sandals. We do plan on trying though.

Yesterday we took Caleigh to Whole Foods. I'm not going to lie.... this is a workout for me. Going across the parking lot in 90+ degrees was a fun whipping. Did you know that Whole Foods has random black rugs throughout their store? I didn't either... until I almost tripped on one. 

We got a couple of "that's the coolest thing" comments, and I probably ignored the stares because at this point in our journey we float through life not noticing the curiosity of others. 

Every outing is an adventure with more to learn each time. You have to wear tennis shoes with the sandals. Flip flops just won't work. All the straps need to be super tight for Caleigh to be able to hold her core upright. You really have to pick up your feet with each step especially if your on uneven ground. 

After the third time of using the Upsee, I can now get Caleigh in and out all by myself. It takes some coordination on my part and cooperation on Caleigh's, but it's easy enough to get it done. 

The waddle... every video I saw had parents doing a waddle of sorts to walk with the Upsee. It took me several times and I really have to think about my leg movements, but I'm now able to bend my knees which actually helps Caleigh bend hers. I have to constantly think about my stride or I end up doing the stylish penguin waddle. 

Caleigh bears weight in a fluctuating fashion. Her dystonia, attitude at the moment and her surroundings change how she either stands up tall or lets the harness do all the work. If she isn't standing up on her own the harness holds her. This is where it gets tricky. If she's just hanging there it really puts pressure on my hips and back. If Caleigh is upright and bearing weight there is no stress on my body. 

There is talk that the Upsee could be a great replacement to the traditional stander. I can see the argument, but we use the stander for specific home situations that the Upsee wouldn't live up to. There is some research suggesting that the reciprocal movement facilitates the user taking steps. We haven't seen this yet because of Caleigh's dystonic tone, but great... we'll take it if it comes.

The whole new world of perspective for Caleigh is amazing and really I think it is the biggest selling point for the Upsee. 

Overall I'm so excited that we purchased the Upsee. So far it has lived up to the hype that surrounded it. I see us using this in a variety of situations. I envision Caleigh volunteering, flying a kite, birthday shopping at the toy store, dancing with her daddy at the father daughter dance, taking books off the shelf at the library, walking at the zoo and actually getting close, experiencing the science museum in an appropriate way, and really almost anything that is typically taken for granted. The possibilities are pretty endless as long as my energy stays endless as well.

We're extremely excited about our many Upsee adventures yet to come.


Presuming Competence

What would you do if you were told that your three year old didn't understand the difference between yes and no? That yes and no were too complex for a three year old to understand? You knew in your heart that she did. You daughter could blow her tiny nose on request and utter "uh uh" for no. You had a way of understanding your child so deeply that it hurt to hear those words not presuming her competence just because she was non-verbal. 

For me, this was the conversation I had with a speech therapist one cold Tuesday morning in January of 2010. I was completely taken aback, and at that point I took on a new role in my child's life. I was to work every ounce of my energy towards finding a way for my daughter to talk, however that may look. 

I went to work researching, and honed in on the upcoming release of the world's first iPad. April 3rd 2010 came and went. We used our occupational therapist's new iPad with Caleigh during therapy appointments while at the same time looking at funding options. 

One month later we took the plunge. We went to the Apple store, purchased the iPad, downloaded Proloquo2Go and started making vocabulary sets for Caleigh. The next day our three year old was telling us when she needed her diaper changed precisely when she did in fact, need her diaper changed. I cried tears of pure joy. My daughter was speaking for the first time in her life. This was life changing on so many levels. 

Her vocabulary grew with each day and week after that wonderful weekend. Not only was she understanding of so much more than we anticipated, she was ahead of the curve on many levels. 

Caleigh was featured in the Wall Street Journal in October of that same year. The article discussed funding options and issues related to the medical uses of the new iPad. It was uncharted territory then. We were on top of the world.

With all things wonderful come dips and hills. 

Caleigh's apparent physical challenges became an issue for those that wanted to criticize the iPad and Proloquo2Go as a viable communication device. Remember those days? Skeptical therapist and teachers scoffing at an amazing invention. Scared of change and afraid to think for themselves by having their own opinion. The general public loved Caleigh using Proloquo2Go. The iPad was amazing to them, but the people that we needed in Caleigh's life weren't as receptive as we had hoped. 

Public school came at age four. The people in this area believed that we, as Caleigh's parents, were "talking" for her. They were very much involved in this early skepticism, and there was no changing their minds and the way things were at the time. 

My husband and I decided to homeschool Caleigh due to many reasons, but a huge component was her communication needs. We started educating at home and never looked back. It was the best decision that we could have made. Caleigh is reading at age level, ahead in mathematics and loves history like no child I have seen. She devours books at a high rate of speed and shows no sign of slowing down. All because of Proloquo2Go. 

I trust in Caleigh's intelligence because that is my job as her mother and because Proloquo2Go gave me the tools to help her. Taking the negativity out of our lives and replacing it with confidence opened up doors for Caleigh that otherwise wouldn't have been there. Therapists that are Caleigh's best cheerleaders, doctors and nurses that believe in our girl became the positive influences that have pushed her further. 

Our local community has been an amazing piece of this puzzle. Shopping at the grocery store and having complete strangers talk to our daughter instead of about her, makes my heart smile. Restaurants are a playground. Playgrounds are left without frustration. We know Caleigh's wants, needs and feelings; which have medically helped us keep a close eye on her conditions. 

Coming up on her fourth year of using Proloquo2Go, there are still days that we struggle with positioning, medical ups and downs, mounting options and fine motor challenges, but overall Proloquo2Go has given our daughter a voice that the world didn't know she once had. A voice that grows stronger each and everyday. 

Today a portion of Caleigh's story was shared on Assistware's (Proloquo2Go) Blog and Newsletter.

You can see it here: and here: