Emma had off from school today so we ventured to the Natural Sciences museum in the afternoon for some fun. I've been telling her lately how BIG she is getting and it seems that she is going through another growth spurt. I think it might be time visit a chiropractor because it's not as easy to carry around an almost 6 year old 40+ lb. girl as it was to carry about a teeny tiny baby!
Tuesday, May 28, 2013
Thursday, May 23, 2013
It seems like there isn't a long stretch in the year when we are bored. Right now we have lots of school activities, communion parties, softball games, etc. We are also working on Emma's kindergarten placement and it seems like we have an agreed upon placement for her in the Fall. I'll tell more about that later once we update her IEP because I'm afraid announcing it on this little ole blog might jinx us. Better safe than sorry in my book! Especially when it comes to IEPs....sigh.
Emma has been making a lot of progress using Evie at home. She has a new SLP at school who hasn't been trained on her device yet but she is working with it as best she can and Emma is starting to show her what she can do with it a bit more. We had an IEP meeting today to increase her Speech session from 2x 30 min sessions/week to 2x 45 min sessions/week based on input from her prior and current SLP. Emma just gets warmed up and in her groove at the 30 min. mark when it's time to end and they want more time with her. So that was agreed and added to the IEP. Also, we'll add training time for her current SLP to the IEP and hopefully she'll get it ASAP. Lastly, we added in some wording that lesson plan words will be programmed into Evie prior to the start of the unit. Right now I do all the programming but once her SLP is trained she will take over that responsibility.
I spent a lot of time on the PRC website (the training tab at the top of the screen is where I went) and AAC Language Lab lately taking the self paced study courses and I've learn a ton! The resources they have posted are wonderful and if you are using a PRC device I recommend checking them out. They have lesson plans for how to teach core words and ideas to incorporate the core words into your everyday life. I printed out many of the lessons for the Stage 2 communicators and plan to use them at home with Emma. I'm thinking I'll plan to dedicate 2 sessions/week at home working on the lesson plans over the summer. That seems about right for us. We also plan to add in outside school Speech sessions with her device over the summer with the AAC expert at our hospital. My hope is to build on the momentum Emma has with Evie lately and have her start Kindergarten with a more functional use of the device.
Emma continues to love playing with her iPad and it really gets her to open her hands nicely. We decided to purchase the iPad attachment for the mount (Mount'n Mover) she uses with her talker. The iPad attachment can be used with both her table top holder and the wheelchair holder. The iPad attachement is the new one with a bungee cord to keep the iPad secure. We can also use it to hold a mirror (my girl LOVES to look at herself) or other items instead of the iPad. It was an investment in the attachment but so far it's been hugely successful. Here is a brief video of Emma playing the Peeping Musicians app that is put out by the people at Helpkidzlearn. In case you aren't familiar with them, it's a website with many fun switch activated computer games Emma enjoys playing.
Wednesday, May 22, 2013
Friday, May 17, 2013
Julia has some serious natural artistic abilities that must have skipped our generation. Her school is very, very artsy and I'm glad they are fostering her budding artist because I am the opposite of artsy.
Emma is hit or miss when it comes to crafts and prefers to mostly engage in the truly messy crafts. She is ALL OVER finger painting! Lately she is taking an interest in using a paint brush and she really loves her one handed scissors.
Here is a self portrait Julia made in art class:
We had a girls' craft night at home the other night. Julia took to it immediately and made several pieces of art and Emma even was interested. We had Evie available for Emma but she chose not to pick her colors with Evie and instead used her hands to indicate the colors she wanted to paint. She took her painting very seriously and I was very surprised at how deliberate she was in her selection and paint strokes. It had been a while since I had painted with her and the last time I helped her I did 99% of the work so I was pleased to see how far she has come in her art.
Here are some photos of our girls' craft night.
I don't have action photos of Emma since I was helping her and couldn't man the camera and the art. She used the paint brush for the sky and grass and her hand print for the flowers. She really wanted to get messy and wasn't happy with only using the paintbrush...that's my messy Emma. She was very proud of the result. It was so cute to see!
Monday, May 13, 2013
Julia loves her "special" breakfasts and asks me to make her one most weeknights. I'm amazed at how just adding this simple container to the mix has changed her morning eating habits. We've even added in veggies such as lettuce in one of the bins and she is happy to gobble it down at breakfast.
I have also made a couple of bento boxes for Emma when we've been on the go all day. Her food is mostly pureed so I use the press and seal Saran wrap over the compartments that have runny foods like applesauce and I store it flat in an insulated bag. So far it hasn't leaked and Emma seems happy with a bit more variety to her foods.
I think it's safe to say that these little containers will be in constant use this summer and beyond!
Friday, May 3, 2013
This was the third year in a row we made a visit to the Abilities Expo. It seems that each year we have a reason to attend. Year 1 - we were looking for a new wheelchair for Emma. Year 2 - we were looking at power wheelchairs. This year - we looked at wheelchair accessible minivans and some new standers and walkers. Let's hope that if we go next year our focus is on getting cool 3E Love t-shirts and gear because that would be MUCH better for our budget! :-)
The most wonderful thing about this Expo is that any piece of equipment you could dream up is likely there for you to see, touch and ask questions from the vendors about. It can take months to get our local clinic to bring in a piece of equipment we want to test if they don't already have one but if we go to the expo we can see them all at the same time and notice the pros/cons of each in real time rather than relying on our memory of what it was like when it was in the clinic. That means a lot to us since Emma's needs are generally NOT cookie cutter. Usually equipment - even (especially?) special needs equipment - needs some modification to work for our little angel.
Like last year, Emma and I hit up the Expo by ourselves and while there we saw a few people we know. We wheeled in and out of most of the cars on display and continue to think the rear entry wheelchair van is our preferred configuration. There is an option for a long rear entry or a short rear entry. The long rear entry changes the configuration of the middle row of seats in the car to allow the wheelchair to roll between the two middle seats. You can then add an optional rear bench seat that can fold down for more passenger seating. The short rear entry only cuts out the rear of the car and leaves the middle row intact. The wheelchair will not roll between the row but it allows use of the regular bench seats and standard leg room for the passengers. I'm not sure what style we will end up with but it will probably be chosen based on price and availability. We will wait until we actually take possession of a power wheelchair before we will buy a van. We are currently in the appeals process with insurance for them to agree to buy her a power wheelchair and let me just say it is NOT fun! Fingers crossed they reverse their decision....
Our other top to do while there was visit the vendor for her mount. Blue Sky Designs was there with the Mount 'n Mover mount system. I have to say that this company continues to blow me away with their customer service! I wonder if it has anything to do with the fact they are located in Minnesota? When I travelled the USA for my sales job MN was always my favorite state to visit because I found the people there to be the friendliest of the 38+ states I've visited. I've always thought if it wasn't so cold it might be a great place to put down roots. Anyway......we wanted to see the iPad mounts. I had emailed the company this week letting them know who we were and what we wanted to see while at the Expo and Nick responded to the email letting me know he would be at the booth and would look out for us. When we got there Nick totally took care of Emma! He noticed right away when that her mount wasn't incredibly secure on her chair and wouldn't even put the iPad mount on it until he gave it a free "tune up." I knew it was in need of service because I lost a lot of the screws over the last 6 months and *substituted* them with different ones (don't judge, us Moms do what we have to do)....it was on my list of things to ask Nick but he addressed the issues before I brought it up. He noticed it was a bit wobbly and immediately set about securing it. He fixed the attachments with screws from his demo parts, adjusted the tension on one joint (and showed me how to do it for future reference), made a couple suggestions on post height changes and added screws to another part. Now that everything is up and running correctly (I didn't know about locktite and some other items he showed me to take care of the issues we experienced) it shouldn't need any further adjustments for a while. I think the mount is very durable and we are all set for years of use. We found the iPad mount with the bungee system to be exactly what we wanted so Nick took down our information and will send us one when he returns to the office. This mount is slightly different than the one shown on their website that uses velcro. Velcro won't work for us as Emma is not known to be gentle! Luckily the bungee mount seems Emma-proof and we can get a quick delivery. After all that flurry of activity I thought I had a photo of the bungee iPad mount but I don't so you'll have to wait for a photo until ours is delivered.
Before we left we met two men from the Hip Hop/Rap group 4 Wheel City. They were really great to talk with and even though Emma was sick today (I had no idea she would spike a fever while at the Expo!), and we met them right before we were heading home, she perked up at their booth and even smiled. The duo 4 Wheel City uses hip-hop music to spread a positive motivational message to people with and without disabilities and gives presentations at schools and other venues to reinforce the message to stay in school and never give up. They even created a song and PSA with Snoop Dogg! We bought one of their CDs and are excited about their mission and success and hope the positive momentum they have developed continues to bring them new opportunities to spread such a positive message! Emma posed for a photo with the guys known as "Rickfire" and "Tapwaterz". See that smile? It was one of the spare few she gave out today. If you are that the Expo be sure to stop by and talk with Rickfire and Tapwaterz and be inspired!