Where has the time gone? I set time aside to come and blog and before I knew it, I had to call it a day, with the promise to write “tomorrow”. This obviously, took longer than 1 day to get here. I think I got lost and took a detour on my way here.
So let’s catch you up on Miss Emelie!
So the last time we wrote was… HOLY MOLY… was the Middle of October. What is today again? December 13… WHERE DID THAT TIME GO?!?!?! Ok so we have Halloween… a concert… a sprained wrist… the play… Thanksgiving… Snowfalls… Brother Cooking Fresh Walleye (a fish)… and we are approaching Christmas… at a never ending high rate of speed.
So let me start with October’s ending events… A concert and Halloween.
They kind of intertwine the two. The kids get to wear their costumes for the Christmas Concert. Em went as a Red Ninja Girl. We got there early to try and get some good seats because even though Em was going to head home after her portion of the concert, the band concert was afterwards and we wanted to see Christian play the bass guitar for Wipeout.
Miss Emelie had a fantastic concert. She was able to assist another child feel comfortable on the riser and sing all the songs with a smile. Then came “Don’t Worry, Be Happy”. Suddenly she was coming off the riser during the song. She was one of the select children to come down and sing in a nervous giggle “Don’t Worry, Be Happy” with a half reggae impersonation.
She hadn’t told us or Christian she had this solo. I was so surprised. I had tears in my eyes. So did Matt. She’d been struggling lately with the play practices and how things weren’t set in stone and kept changing and then to be in the spotlight, she shined. And Christian he ate up ever minute playing one of the two bases in his concert.
Halloween was interesting. Emelie went to a Halloween party. It wasn’t too far from our house so when it got overwhelming for her, she left. The dad brought her home. Em regrouped. Once she had eaten she wondered if they would let her come back. We called the mom and dad and they were MORE than understanding. She was exhausted but had fun.
Christian was the good big brother. I had to work and so did Matt. He took Emelie Trick or Treating and they had a blast. She even shared the candy with him. So Halloween was a success. Leading into November and after a lot of anxiety in October with the rehearsals of the play and Em not familiar with how plays work it was tough.
But November came and brought with it the play. One of the last practices Em fell hard on her wrist. It’s a long story. So off the ER we went only to find it was sprained. And while the brace made her wrist feel better she HATED wearing it in one regard. Her sensory issues were off the chart. But wear it she did. She refused to wear it on stage but we figured it was one less batter to contend with and her pediatrician said it was ok but she needed to be careful.
Both she and Christian did well in the play. It was a parody/spoof of pop culture figures. Christian was playing the spoof on Edward Cullen from Twilight and Em was an Alice in Wonderland. The final night led to some literal thinking that caused her to walk away from the play but once all the cards were on the table it was understood how one person can make someone else feel so small in the wrong time wrong place conversations. Once we found Em, since she’d isolated herself in hopes to sneak out to daddy and have Matt drive her home, the cast showed her support and told her it was ok and next time things will work out better.
She did the play in entirety 2 out of 3 times and almost all of the third time. She struggled earlier in the night so while it caught us off guard, we weren’t entirely shocked. We hoped she’d have made it through but sometimes literal thinking works on their self esteem. Hers took a hit that night that carried through the weekend and come Monday wore on her to the point of only being able to handle a half a day at school.
As the days had gone on through November, she’d been battling to get into a routine and feel comfortable with it. She was working hard on her homework and being tired from trying to hold it together for everything. On Veteran’s day I had a horrible allergic reaction to something I ate and had to go to the ER for treatment. I had an Epinephrine shot. Something I’d never had to have before so she was really worried about me too.
She also brought home some artwork because the quarter was done. She made a nice underwater scene with a narwhal for Christian because she knew how much he likes them. It’s his nickname. And when I asked her why she hadn’t shown us this or given it to him she told me that she didn’t feel it was very good. Her brother let her know that it’s amazing and he’s getting it framed for his wall.
She also has perseverating on the “best friend” issue she sees. She gets sad and lonely because all her friends either don’t live close enough to have her “hang out” or “sleep over” and she hears the girls at school at school making plans. This goes in streaks. However it was funny. She came home one day from school and it was right before Thanksgiving. She was complaining one minute and all suited up to go in the snow. It was the best snow we’ve had around her to date and she grabbed her sled and started sledding.
At one point I looked outside and it looked like she was making a snowman. The conversation was very amusing. I asked her if she was having fun playing in the snow. She told me she wasn’t playing in the snow, she was sledding. I asked her was she building a snowman. She told me that she doesn’t build snowmen. She was building a snow wall to stop her sled. So with the snow and Em outside sledding, throwing snowballs at our patio door and building a snow wall to stop the sled, not playing in the snow though.
Afterwards, I replayed that scene with a smile and I thought of the line from the movie Frozen. “Do you want to build a snowman?” I thought of how when I saw Em building with snow, I immediately thought “Awww How cute! She’s building a snowman.” Then in my mind I chuckled over that exact exchange when I asked her if she was building a snowman. Her Answer:
I don’t build snowmen and I don’t play in the snow.
So like our friend Sean said the scene would play out:
Princess Anna: Do you wanna build a snowman?
Em: I don’t *build* snowmen.
And then Thanksgiving came. Em picked at her food but she ate and it was a good quiet day. Just the four of us for a change since we are used to a house full of people. Em was torn. She enjoyed the day. Yet, she was still kind of sad. She said while the quiet and peace was nice it was weird to not have all the people around. And she was right.
The next day I went to work but Matt and her came up for lunch. Over lunch she proudly exclaimed at the end of a hilarious conversation “Look. My autism isn’t genetic. My awesomeness was too great. It was caused because I’m just that AWESOME.” Yes she knows that the truth but in her mind THIS is what counts! I don’t think I’m going to argue with her because she needs to believe she is awesome. Especially when her esteem like many middle school girls her age are fragile. And besides, we think she’s pretty awesome.
She also pushed herself to try new foods. One of those new foods being walleye. Walleye is a type of fish. Christian wants to start cooking more and took it upon himself to tell me he was going to cook the fresh walleye given to me. I figure he’s got to learn somehow. He looked up a recipe and saved it on his phone and he prepped it and cooked it. And Em ate some of it. She didn’t like it but ate it because she didn’t want to hurt his feelings. It was great but not to her taste. She even said that it was cooked perfectly but she just didn’t like it.
And here we are in December. The weather here believes in a yo yo affect and can’t decide if we are going to stay in the 40’s or go to the teens. I don’t know if we are going to have a white Christmas but this up and down has Em shaking her head. Now that it’s suppose to be winter, she wants snow. She’s patiently waiting to take the sled out again.
Earlier this month though, we had a discussion about how one celebrity was talking about his daughter with autism and looking for a cure. Before I chase anyone away, we don’t talk down about those wanting a cure. It’s just not the right choice for us even if it were possible. And I’ll explain that here in a second. Most of why we are against it is because of Em’s feeling about it. I also won’t apologize for Em’s feelings. I will preface this by saying that she understands how people would think they want/need a cure if their child is on the severe end of the spectrum. She personally doesn’t agree. She just wants some to hear her take on Autism, from someone who actually has it and deals with it.
Anyone who asks her the right questions will get her to tell you how hard it can be sometimes to have Autism. There is a difference in her though. She CHOOSES to focus on the positives rather than the negatives. And there are A LOT of negatives. We fully admit that.
We all walk in this life, autism or not, with two choices: dwell on the negative things or focus on the positives. It’s not easy to focus on the positives when you feel trapped inside your head and not being able to tell those around you that you love that they aren’t helping you but hurting you without meaning too. But that is what Emelie chooses to do.
This girl spreads awareness every single day. She does it without our help. She had made a new friend; R. R had come over one day after school and forgot her backpack. We drove Em over to drop it off. She went to the door and then inside. She was gone for 15 minutes.
We ran into R’s dad one night. It was quite by accident. I was buying Em some gum for the kids and explaining that our daughter had Autism and her therapist got her using gum. He asked us who our daughter was. Living in a small town of less than 1500 with a larger than life personality filled child x 2, chances are he knew at least one of my kids.
When I told him who Em was his reaction was priceless. First he goes, I know her. The next line was “I LOVE THAT GIRL”. He told us that day Em came by she OWNED her autism and her confidence about it was refreshing. She was explaining her autism to them so that they understood her.
That girl is spreading her own awareness and advocating for herself. That family still supports Em anyway that they can even though Em and R aren’t close anymore. Em’s still there for R and her sister A and will be as long as she lives. That’s who Em is. She doesn’t realize how many “friends” she has and the latest this month has been how lonely she is. Eventually she’ll find that best friend. In time someone will be that girl who will be just the person Em needs when she needs her.
In the meantime, she is focusing on stuff she can. She has a Christmas concert coming up, where she has another solo. She is doing Solo/Ensemble for choir. She is auditioning for the musical. While we are ALL hesitant and nervous we know it’ll be worse if we don’t let her try again. We also think that with one production under her belt she will better understand what’s expected and how things are done.
All in all, we are getting through and managing. AND we are back to start blogging. Em is actually going to write a piece here before the end of the month.
If you made it this far… thanks for catching up with us!