Friday, July 25, 2014

Working for Music

This week I was told about the numerous ways I give into Max. It wasn't something I realized until I was being called out as it was happening. Color me surprised! So, now instead of playing music all the time (like some people play their TVs) Max is going to work for the songs he would like to hear (for the most part). I have also been challenging him with solid foods this week. So far, he has had a piece of solid food with every meal ranging from bits of cookies, chocolate chips, taco meat, kiwi, bread, etc. He definitely doesn't appreciate this challenge but he isn't fussing the way he did last year.

Anyway, the video below is a preview of Max starting to braille "Wagon Wheel" so he can listen to his favorite song (of the moment). We got through "wagon" but "wheel" was a wreck and he had a tantrum. Honestly, since getting the SMART Brailler the tantrums have been non-existent. I think he is rejecting how much I am beginning to challenge him. We will see who prevails! I sure hope it's me. ; )


Brailling words for music from Amber Elia on Vimeo.

Thursday, July 3, 2014

Happy (Soon-to-be) 4th of July!

As everyone is getting ready to celebrate tomorrow, I just wanted to say Happy 4th of July! Party hard but party safe!

Max and I are both sick, I have strep and he might have strep...so it's safe to say we will be staying away from civilization for a few days.

XO

Sunday, June 29, 2014

Diagnosis Update

Last week, Max had an annual visit at the National Eye Institute. This appointment over the past three years has ended the same...There is no response, continue to assume he is totally blind. We'll see you in a year. *Those are not the exact words but it's the gist and that's enough.*

So, the night before the visit I was thinking about how I wasn't preparing the way I did the other years. I would scour the internet for questions I haven't asked the doctor yet and prepare a binder full of information (notes of past doctor visits and progress reports from EI). This year I just grabbed a beer and turned on Netflix and tried to relax as much as one can before such a visit.

The morning of the visit I had an awful feeling I couldn't shake. Max was really well-behaved during the visit and loved the sliding doors to the clinic so much that every time he heard the creaking from the opening and closing he would go into laughing fits! The entire room was starting to chuckle at one point. It's those moments that make such visits easier to bear.

So in what I thought was going to end up being a visit like the years before...we ended up hearing that Max might have a missing diagnosis. Max sat really well for the doctor once his pupils were dilated, and his optic nerves are not as small as the MRI report states (the MRI was completed when he was 6 months). The doctor asserts that the optic nerves are slightly smaller than average, and given their size and Max's non-visual response there may be a missing diagnosis and likely something wrong with his pupils...

We left the visit knowing two things: NEI is requesting Max's medical records from the other places we have been to, AND we are to schedule his next appointment in 1 year...

I was really distraught after that visit and whelp, it still doesn't feel well but it's okay! He's happy regardless. : )

Friday, June 20, 2014

TV Show - Parenthood

Do you watch Parenthood? I was looking for a new show to start watching and someone told me this one was a favorite so I checked it out.

I can't tell you how excited I am (and bummed because I should have started watching it earlier) about Parenthood. I'm only in the first season but holy cow! The different life situations that the families get into are very realistic, and the show has that emotional charge that just draws you in. Not to mention, in the first season a child is diagnosed with Aspergers and it was handled in a way that seemed very much like my own experience with Max and getting his blindness diagnosis.

All in all, I'm excited about this show. It's in its 5th season so I'm very behind the times, but if you haven't checked it out--try it!

Monday, June 16, 2014

Helmets & The Hungry Caterpillar

The other day I took Max to the park to kick around a beepball. His daycare was playing soccer with him and I wanted to capitalize on his willingness and desire to now kick everything he felt his foot touch. As we were at the park, I saw a kid on a scooter and thought that maybe a scooter is the next thing to try so yesterday we went to Target and tried on helmets. Needless to say, any helmet that gets your kid reciting "The Hungry Caterpillar" is probably a keeper!


Trying on helmets and reciting 'The Hungry Caterpillar' from Amber Elia on Vimeo.

Tuesday, June 3, 2014

A Few Reasons Why Today was Great!



Today was a great day! I was smiling from the moment I woke up (before my alarm went off) here are a few reasons why:
1. I ate BBQ pork ribs for breakfast - YUMMY!
2. I successfully used a "Princess Bride" movie quote in a sentence! 
3. Max enjoyed his bird noises CD and when we had to shut it off he didn't throw a tantrum.
4. After Work and School, Max and I went to the park and he explored BAREFOOT!

Beep Balls - Does your child have a preference?

Max and I head out to the local park at least a few times a week. It's cheap fun and there is so much to do! One thing that I have been trying to do lately is bring a ball or something he can chase after. I'm starting to learn that Max just doesn't care for items that "jingle" like balls filled with bells. In the park those bells are so quiet it's impossible for me to hear them, so I guess I understand why he wouldn't be excited to play, kick, run, etc. I have beeping Easter eggs from Audible Eggs that I use around the house and I may have to take them to the park next time--sorry, folks with dogs! : )

Does your child have a preference--bells, beep, rattle sound? Also, what sort of games do you play at the park? Max really loves the swings, seesaws, sand pit, and just listening to birds. Those are all great but they become tired after awhile.

On a semi-related note--does your child hate the slide? Max will fuss and cry at the mention of going down the slide? How did you get your child to love the slide?