Monday, April 09, 2012

A break from our regularly scheduled programming

Last week was spring break for Emily. We really didn't have anything special planned. We had a few appointments, but the rest of our schedule was wide open. So, it was a nice change of pace for us.

On Monday morning, we had an appointment at the WIC office. They cover Emily's formula and I am very thankful because her formula costs more than $500 a month. The downside is the length of these appointments - I have never spent less than 2 hours there. And only about 10-15 minutes is spent talking to an actual person. We have to go every 3 months (Emily only has to come every other time) and I dread these appointments. I don't know about any other 4 year olds, but Emily is not a fan of sitting still and doing absolutely nothing for 2 hours. So I brought quite a few books and our Kindle so she could play some games. She did really well, which is more than I can say for most of the other kids in the waiting room. I don't think their parents realized they would be there for such a long time and didn't seem to come prepared. It wasn't the ideal way to start our spring break, but we survived.

Tuesday morning, I decided to take Emily to the aquarium. She used to love going, but somewhere along the way that has changed. She absolutely loves the fish and all of the other creatures. She likes the way the lights reflect in the water and how some of the tanks have bubbles in them. The issue is the noise level. It isn't just the other kids that are a problem, it is the music. Every area of the aquarium has music playing and it can be really overwhelming for her. We usually rush through the place at record speed. What has worked well in the past was getting there right when they open. They usually do a penguin parade near the entrance and I take that opportunity to rush to the exhibits ahead of the crowd. It has worked nicely a time or two.

I should have known better than to try that on the week of spring break. There was no chance of getting ahead of the crowd. So we made it through the aquarium in about 30 minutes. We did stop at a few exhibits that I know Emily enjoys, but we rushed past quite a few. I told her she just needed to let me know when she was done and we would go. She kind of started to whimper at one point and I said "do you want to go?". Her whole face lit up like a Christmas tree (that is her way of saying yes). So I told her "thanks for letting me know" and we headed for the elevator. She seemed to calm down immediately, relieved that her message came across. So we will count that as a communication success. Afterwards, we headed to the book store where she was able to relax and enjoy herself. Then we had lunch with Mike and had a mellow afternoon.

On Wednesday, we went to Children's for a conference meeting about the therapeutic preschool program (they were off all week too). We met with her teacher and therapists to talk about how Emily is doing with her goals for the year. In general, she doing pretty well for everyone except the physical therapist. She does not like the things that the physical therapist makes her do. She definitely has spunk. There are things that she can do, but she will only do them when she feels like it. It has to be on her terms, not theirs. She also has "only child syndrome" - she is not a fan of sharing or taking turns with the other kids. She thinks everything should revolve around her and cannot figure out why anyone else would think otherwise. You would think we spoiled her, but we really don't. She is just strong willed!

On Thursday, she had an appointment with the ophthalmologist. Emily is not always cooperative about eye appointments and this time was not much different. She was following direction at first, but then decided she was done. At one point, the doc asked her to do something and she just smiled and let out a little giggle instead of doing what she was asked. She definitely has a mind of her own! The appointment really centered around the health of her eye and seeing if anything had changed since the last appointment. The only thing new about this appointment was that we left with a prescription for glasses. The doc wants Emily to wear glasses for "near tasks". The doc also plans to send Emily for a CVI (Cortical Visual Impairment) assessment and has Emily on a list for a low vision clinic. Both of these future appointments will give us a better idea of Emily's functional vision.

On Friday, Mike had the day off work. We decided to take a look at wheelchair vans. We spoke with a man that was SO helpful! He gave us a lot of information, answered a ton of questions and didn't try to push us into something that we could not afford. We figured out pretty early on that we cannot afford a wheelchair van (new = $50,000 - $60,000, used = $30,000 - $35,000). The salesman was great about showing us all of the options (side vs. rear entry ramps, automatic vs. manual ramps, high end vs. low end tie downs for the chair, etc.). He also showed us a few things that might be a bit closer to our price range as well as some things that van modifications might be a bit closer to our price range. It really was very informative.

The appointment lasted a bit longer than we expected. Emily was exhausted by the time we got home because she was late for her afternoon nap. She really thrives with a consistent routine and when we mess that up even a little bit, we can pay for it! Friday night, Emily had a very rough night's sleep, which is unusual for her. She woke up several times crying and practically inconsolable. We could not figure out what was going on. In those times, we really feel the pain of Emily's communication struggles. We wish that she could tell us what is wrong, so we can make it all better. It is really hard on all three of us. Thankfully, she was perfectly fine the next day and has been fine ever since. She certainly likes to keep us on our toes!

3 comments:

Stephanie said...

What a busy week!! As homeschoolers, we always avoid kid-friendly places during school vacations and on Thurs/Fridays during the summer. Just too many people for our tastes. :D

Anonymous said...

Sounds like a busy Spring break. Glad to hear Mike had some time off for family time, although it involved van looking. I love to hear what is going on in your lives. Helps us to know how to pray for you. We miss you all so much.

Some pics of growing Little Em would be nice, and you and Mike too!

Blessings,
Lynn

Kristina said...

It really seems like things are coming together for you! Emily has found her voice, is able to express her opinion pretty readily and you are looking at options for making your lives a bit easier. So happy to see all the great things happening for you!

I did want to say I know of people that use headphones/mufflers to cut down on background noise in environments like the aquarium. I know there are all price ranges of them out there and our local technology lending library has some to test before you buy. Thought you might want to see if you local technology lending library has some, too and you can see if it makes a difference for Emily on trips to the aquarium.