Olfactory was the first sense for the first week of OT. We learned that Ruby pretty much only likes fruity smells and was so grossed out at the smell of vanilla she gagged. I’ll be adding smells to my list of things to look at when she is having a tough time. I’m going to be adding fruity scented erasers to her sensory calm down box. Smells can help with calming or exciting the limbic system.
They also worked on ways to recognize how Ruby’s body is feeling using a car’s engine as the analogy. Our homework this week is to stop and talk about how our engine is feeling. I have to say it has been helpful for me too. We were running late for school this morning and I was feeling anxious. We all took an engine break and breathed together to slow down. I’m pretty excited to finally have tools to help her with calming down. It has been the thing that we have struggled with the most. Even fun times that we have looked forward to could cause her to spin out of control and meltdown. I realize that I have shied away from so many events, because I didn’t know how she would act. Hopefully those days will be behind us soon.
Overall life is getting better and the tightly coiled anxiety that I’ve felt for so long is slowly uncoiling. It’s getting easier to not panic when Ruby gets overstimulated, so I can actually be helpful. Before I felt like I was just running from fire to fire and always throwing water on it even when another tool would have worked better. Ruby is learning more about what helps her and there are plenty of times when I can step back and let her do it on her own.
I’m also unpacking my feelings over not being a good mom. I know that’s a tough thing for people to hear me talk about, but I think it’s important to share. Our society puts so much pressure on mom’s to have perfectly behaved children that we look at ourselves as failures, so we keep trying instead of really looking at what is going on with our kids. I can look back at a million behaviors that make sense now, but I just couldn’t see the whole picture. More information needs to be out there, because about 10% of kids have sensory processing disorder. How many parents are feeling like me and hiding it, because it looks so much easier for everyone else? So I’ll keep updating you on our journey just in case a parent of one the 10% reads this and finds comfort in knowing they aren’t alone.
I talked to Ruby’s OT over the phone this afternoon and she went through all of the results. I won’t go into everything, but basically she has retained all of her primitive reflexes as well as SPD. Going through and talking about everything just kept making lightbulbs go off and it explained so much about Ruby’s behavior. Her food preferences to why it seems like she can never stay on task.
The plan is to start working on reflexes first. Apparently this is all done with exercises that they will teach her and we will work on home. She does have some oral-motor issues, so they will work on those. I will know we are getting somewhere once they can get her to eat pizza! She has some visual problems and they have prescribed vision therapy, but we will wait to start on that until we know it is really needed. Working on other things might correct it. All of this will take roughly 4-9 months. Ruby might still not be fond of loud noises, but they won’t throw her into fight or flight. A place that she sadly lives in way too much right now. She might have a regression around major life changes, but an OT tuneup should get back where she needs to be.
Hearing everything has finally silenced that nagging worry that has followed me for the last 6 years. I’m not the terrible mom that was failing, because I couldn’t calm my child or teach her. I also feel like we will see more of Ruby’s personality. I’ll, of course, keep everyone updated! Thank you, so much for the support and encouragement. It has really been helpful.
We got an email with the results from Ruby’s evaluation. There’s a whole lotta information to process and some I’m going to have wait until I talk to her OT tomorrow to really understand. My biggest takeaways were she does for sure have Sensory Processing Disorder and some retained reflexes. We are starting with 6 months of weekly Occupational Therapy that will target integrating her senses. Her OT will start giving us specific things to do once she works with Ruby more. For now we are to do heavy work every 2 hours and create a calm down space for her. It feels good to know that we were on the right track and it also feels good to be getting to work on helping her.
She has been doing better in school and has had two purple days in a row. That’s kind of a big thing for her and I think it helps her confidence. Her teacher has been wonderful about keeping us informed and allowing Ruby the things she needs to thrive. She sent a picture of Ruby’s progress in sight word recognition today. She knew 4 at the beginning of October and 20 by the end. I totally cried when I saw it, because Ruby is doing amazing despite everything going on in her brain. I’m going to have to come with a really good teacher’s gift for Christmas.
Now my goal is to tackle my own anxiety and that means talking to my doctor about meds when I go for my checkup next week. The next few months are going to take lots of creativity and patience. It’s hard to do that when you’re trying to battle your own anxiety.
We went to Baldwin City today for Ruby’s evaluation. She loved it. Her OT, Lindsey, was super nice and really knew how to keep Ruby going with the right amount of breaks. All of it was play based and Ruby was most excited that she was able to get into a ball pit and she got to eat M&M’s! I should be getting a call next Tuesday with the results of everything. Lindsey did tell me that Ruby had retained her Moro Reflex. It’s the startle reflex babies have and is the reason she gets so anxious about little things. It triggers the fight or flight response.
Lindsey also said that this all impacts Ruby’s ability to make decisions, learn new skills, and problem solve. It really makes me look at her in a new light and makes me see that I need to change my approach, because she’s not just being stubborn or oppositional. I had fallen into this trap of thinking that I had to stand my ground and that I wasn’t being constant with consequences. In reality, her “bad” behavior is a result of not knowing how to cope with the world and she needs to learn the skills to handle it all.
We had plans to go to the park after we picked up Milo, but it was misty and cold. I was going to just drop off library books and make an inside fort instead, because I was not feeling up for tackling the library at that moment. Past visits have ended with Ruby climbing on bookshelves and all of us leaving in tears. Everyone promised to listen, so I took a deep breath and we went in. Instead of getting upset when Ruby started to ride the bronze statues I gently reminded her that we can’t do that and redirected her to picking out books. We actually ended up having a fun time and no one, including me, got upset.
It’s going to be a learning experience for all of us, but I’m very optimistic that we will all come out better. There were lots of dark moments when I worried about my relationship with Ruby, but even in the last week I feel like she can tell me more. Starting on the 30th we start weekly OT and I can’t wait to see where it takes us.
I’m up early even though the kids spent the night at grandma’s last night. Yay, internal clock and anxiety. The honeymoon of finally realizing that Ruby had sensory problems has come and gone. The old anxiety is back and shifted. I do know that I have always watched her and tried to anticipate what was going to set her off, but know I’m trying things and watching to see what happens next.
I recently listened to a podcast on SPD parent zone about riding the waves with your child. How instead of panicking, standing there, and being dragged under you bob with the wave. It takes a lot of trust in yourself and in your child to do that. Riding the waves at home is usually easy. I have a hammock, bounce ball, and trampoline plus a lot sensory play activities. When she starts repeating things or laughing like crazy I know we need to do something. The hard one is trusting the wave in public.
After researching, my struggles as a child and the struggles I still have point to me having sensory issues too. People always joke they are better parents in public and I have always been the opposite. I get overwhelmed and at the first sign of the kids being kids and I want to jet. Last night, my husband and I were at the store and happened to run into the kids and my sister. The first thing I noticed was that Ruby didn’t have headphones on and it just freaked me out. We have had so many meltdowns at that store and I just wasn’t mentally prepared to deal with it. I ended up rushing us out and most likely caused the meltdown, because in my flight I couldn’t slow down to parent gently. I was able to get home and calm her down with lots of swinging in the hammock. After 30 minutes of that and jumping on the trampoline she was calm enough to go back to grandma’s.
The whole thing upset my sister greatly. She didn’t understand why I didn’t trust her in the moment to defuse the situation. It was hard to trust her, because I still haven’t given up the idea that if I stand firm the wave will miss me. The situation sucked and I am posting it to remind myself that I have to learn from it. I can’t keep just running into the waves, because it’s making me tired and anxious. Tired anxious mom is not good to be around and she will burn out faster.
Today we have Ruby’s party at a fun loud place with friends she hasn’t seen in a long time. My goal is to give myself and her grace. I’m going to accept help. I’m going to bob and if the wave crashes I’ll trust that we will survive. We have a lot more tools in our belt.
Every aspect of my life feels like a balancing act right now. How much of one activity will help Ruby? Does she need more stimulation or does she need less? Am I talking about SPD too much or am I holding everything in. We have an appointment at PKtherapy on Tuesday and hopefully we will have help soon.
Overall, things have been better since my last post. Today Ruby’s teacher was saying how kind Ruby was to her classmates. Giving us both some grace has helped the most. I felt like before that holding on tightly to rules was how I could keep the tantrums from happening. The mom meltdowns as well as the Ruby meltdowns. Now I encourage skipping to the building, because that jumping could help with focus and giving up control helps with my anxiety too. They paint more, because walls wash and it doesn’t matter if it gets everywhere.
I also feel like the balance of being a good friend is tough. Thankfully, I have some truly amazing people in my life that are helping me balance by listening to me talk about sense stuff and reminding me there is big scary world out there with lots of stuff going on. Although most days it’s easier to think about the best activities for vestibular imbalances rather than what’s going on in the world.
The last balance is how do I juggle two kids with different needs. All of the sudden I’m not sure if I should let Ruby handle Milo on her own or do I intervene. I’m sure future me will say relax it will be fine! Now to keep reminding myself that there is mat under the balance beam, so I can dust myself off and learn when we fall.
So it’s been about 4 years since I updated this blog. With everything going on with Ruby and the beginning of our journey into Sensory Processing Disorder I thought now was a good time to start writing again. Hopefully this will help people understand what we are going through and keep people up to date. Or maybe I’m just talking into the void and that’s okay too.
Since Ruby was a baby she craved movement, hated loud noises, and often hated hugs and kisses. She has been the kid that had to climb to the top of everything, ran everywhere, and screamed or sang at the top of her lungs. She could be super brave one minute and scared to death when a loud motorcycle rode by. Often exciting times would cause her to get so overwrought she would have tantrums. It wasn’t uncommon for them to last up to an hour and involve her hitting, bitting, and kicking me. She could go between being able to have a conversation with us to barely being able to speak a word. The hardest thing and the thing that triggered me the most was it seemed like she never listened to me.
For a long time I’ve felt like I was failing as a parent. I would go from being a gentle AP parent to a yelling crazy parent and feeling terrible, because I just couldn’t understand why she couldn’t be quiet or sit still. Looking back at some of my mom meltdowns makes me feel horrible. Also looking back I realize that I was in denial and that I was inadvertently making things harder on her. What finally woke me up is when she started having trouble at school. Her teacher noticed how she shut down every time she corrected Ruby and the noises she couldn’t control. The breaking point was the day after Halloween when was she very rude all day long and pushed a couple kids. It seems minor, but it was so off for Ruby that both her teacher and I knew something was wrong. That night I really looked at Sensory Processing Disorder. I didn’t just stop reading when I got to a symptom that didn’t match. So much of it fit her and I couldn’t deny it anymore.
For so long I have mentally cataloged her unusual behavior and every time I saw it my anxiety increased. Finally figuring out that it’s a sensory issue has greatly shifted my perspective and lessened that anxiety. I also realize that I’m a far better parent than I’ve given myself credit for, because as much I could make it hard I also created an environment where she could cope and feel safe.
So our next step is get evaluated and find a good occupational therapist. In the mean time I’m trying to listen to her and help however I can. She bounces a lot on a mini trampoline and an exercise ball. I don’t stop noises unless it’s super loud and I’m trying to have lots of sensory experiences available for her. She has noise canceling headphones. The first time she put them on she smiled and said I can’t hear anything. Today was the first day she wore them to school and I just got a message from her teacher that she had an excellent morning. Her teacher has been amazing and helpful. I feel like we are so lucky that Ruby is in her class.
Lots of people have said that they hope she doesn’t lose her uniqueness. Our goal is to help her be herself even more. I realize now how much she struggled to get through the day and how truly amazing she is doing when there are plenty of times when it felt like a noise was going to literally kill her or that she was so overwhelmed she couldn’t remember what just happened.