I’m not sure why and I won’t dwell on the why, but they’ve been in synch. They’ve wanted to be together. They’ve wanted to be sisters. We have spent a few minutes (just a few) here or there coexisting in the same household, same level, same room. I’m not sure why but I don’t ask why. I will just enjoy. Shhh. Don’t let them know that they seem to be happy together.
It brings me joy. It fills my heart. Especially after a very tough fall. Heck, this fall sucked. But, if this is the brief moment that brings this fall to an end, I’ll embrace it. This makes my heart feel full. This makes my heart thankful!
At what point does “she’s adjusting” become “I think there’s a bigger issue”? How many weeks into the school year before we say something bigger is going on? How do you help a little girl who gets so anxious when you ask her why she is sad or nervous that all she can say, is “I don’t want to talk about it”?
I said to my older sister recently, “I can do autism. I know how to help someone with Autism. Anxiety? I can’t do anxiety. I don’t know how to help someone with anxiety.
It’s been over a month and Alyssa has done nothing but struggle at school. Daily reports of crying, anxious moments, refusing to let anyone help her calm down. It’s been heartbreaking to receive these updates.
504 plan has been put in place. Modifications and support are now a part of her day. Still the struggle continues. Today I channeled into my mama bear mode after getting some advice from others and called the school and made some requests that hopefully will help us dig deeper into what’s going on. Hopefully soon we can find the right supports that she needs to help 1st grade be as fun and successful as it should be.
Therapists have been working hard with Courtney on expanding her language using her talker. One way they have her to ask for things is specifying who she wants to get the item she needs. She always needs to be promoted to do this.
Tonight during therapy in our home, Courtney was upstairs and asked her therapist (using talker) if she could go downstairs. She went downstairs, sat down on the couch next to me and spontaneously made this multiple word request!
To those families who are new to the journey of AAC. I won’t sugar coat it. It’s a long and hard process. But watching your child sho struggles communicating find that they have a voice and that their voice has power has to be the most amazing thing in the world and worth every ounce of the struggle.
I read one of my blog posts from last year and it was about a quote my brother shared with me. “It’s ok to not be ok”. I’m glad it popped up in my memories. I needed this reminder.
Yesterday while at school I got a phone call from the girls school district. I was expecting one from Alyssa’s school but it ended up being the nurse from Courtney’s school. She was acting as if her tummy was bothering her. They wanted to know if there was anything they could do to help with possible constipation, I gave them some suggestions and then I went back to my students who were in music therapy.
I’m glad they were in the middle of a special. I’m glad I had another therapist in the room. I’m glad my paras were in the room . I’m glad because though I physically was in the room, my brain shut down. I emotionally hit a point where I couldn’t even think. (Fortunately once music therapy was over, I was ready to teach again.)
I hit this point because sometimes life is just hard.
I’m not ok right now. I have one child with autism whose aggression is increasing and another child who has now had 2 months of consistent meltdowns at school. Stuff at work is piling up, stuff for my courses is piling up and stuff at home is piling up.
I’m not ok.
I forgot, though, that sometimes it is ok to be in that spot. It’s normal to hit that point. It’s ok to not be ok.
I can’t let myself stay at this point for long, though. I don’t like how it feels. I also know that we always get through these rough spots and we usually come out stronger on the other side.
One of the biggest things those with autism need is consistency. A consistent schedule. Consistency at home. Consistency at school. Change is hard for everyone but for those with autism it can be really hard.
Schools attempt to develop programs that provide this consistency especially when it comes to the teacher. Often they will find a way so students can have the same teacher for more than one year. Well, at least that is what we thought would be the case for Courtney and the program she is in. Unfortunately that has not been the case. We found out yesterday that her new teacher this year resigned this week. This new teacher that they need to hire will be teacher number 4 in 2 years. We are shocked, disappointed, frustrated and many other big feelings. But most of all we are heartbroken for Courtney and her peers.
I’m not going to blame anyone. I’m not going to point fingers. In fact I’m just going to leave it at that and just ask for positive vibes be sent for this class as they go through yet another big transition.
When it has come to blogging about Courtney and her autism, I have been an open book for the most part. I also have shared a lot about Alyssa and her struggles with food allergies and anxiety. Recently I have been struggling with how much to share especially as we continue to navigate through this difficult phase with Alyssa and her anxiety, I’ve questioned if maybe I’m too much of an open book? Should I respect their privacy?
Whenever I start to lean towards, maybe I should share less, things get tough and I find I’m missing the one outlet I have found helpful…blogging.
So here’s the situation that’s weighing on my mind and heart. As Alyssa continues to go through some intense struggles at school, she is slowly starting to open up about some of the things that are making school hard. It breaks my heart to hear some of these things and I hope I can find the way to help her through it.
Alyssa has a sensitivity to noises. She has verbally shared with us noises aren’t just annoying, they hurt her ears. I can’t type on a computer next to her, I can’t sing a single note next to her, she gets startled by the slightest noise. The list goes on. This isn’t just a little annoyance. This is a disability. Unfortunately, we spend our days surrounded by different noises. There is no way to protect her from all noises. We will figure it out. Her team that we have been forming at school have been very supportive as we work through this. I just hope we can figure it out before it starts hurting friendships and school work.
We will get to the root of what is going on during this intense phase with Alyssa. I don’t think the noises are all of it. But as I have done and continue to do for Courtney, I will also do for Alyssa. Advocate like hell until she is happy and successful as she deserves to be.
I did a thing today. The girls and I went to a birthday party for a friend of theirs. I don’t take Courtney to many birthday parties outside of family ones. It’s usually too different, too loud and we usually have a therapy at the time of party. This time I decided to bite the bullet and try. AND…it was a huge success!!! Courtney had a field day running and jumping with no care in the world and Alyssa made a new friend!
I love watching them sleep. They are so innocent looking. They are at peace. Their sensory system is at rest, no anxiety, no frustrations. Just sleeping. I wish I could make their world as peaceful when they are awake. I wish I could protect them from the noises that set them off, the fears that they have, and the things that worry them.
I may not be able to protect them through it all my I will certainly love them through it all. And then at bedtime when they fall asleep, I’ll watch the innocence.
I go through phases where the clock is an obsession of mine. It’s all I can think of. I check it all day long.
These phases usually coincide with how my girls are doing. If one is struggling, the clock becomes my obsession. I sit at school wondering what they are doing at that moment in time.
How are they doing?
Are they happy?
Are they calm?
Are they listening?
Is my phone going ring soon because something is wrong?
No matter how crazy it is in my own classroom, I still obsess. I still check. I still worry.
I count down the minutes until 2:15 pm. At that time I breathe a sigh of relief. They did it. They made it through the day. No calls, no emails.
Sometimes, like right now, the clock is my worst enemy.
I was sitting next to Alyssa on my bed as she was trying to fall asleep. She suddenly turns to me and says, “mommy, I think courtney is hiding her voice. When she was a baby she had a voice. Remember she sang, Let it Go?”
I knew exactly what she meant by her singing. Alyssa has seen the video. Alyssa has heard us talk about how Courtney could say some words and then stopped. So when she said that I acknowledged her beautiful theory.
She continued to say that maybe some day her voice won’t be hiding anymore.
I decided to take the moment to ask her if Courtney’s autism makes her mad or sad. She responded beautifully, “mad and a little sad. Just a little sad. I still love her though.”
Autism: A Little Wild 