Wobbles

On my walk this morning I was reflecting on where we were and how far we have come. This morning Ruby was standing by the door to the van and I asked her what’s up. She said she had thought about hiding and decided not to because it would make me mad. I know that doesn’t seem like much, but for a kid with executive function delays it’s huge. She had to use impulse control, forethought, and she put my needs before hers. I almost cried, but she really dislikes when I point out her progress.

Transitions have always been one of her biggest struggles and can easily trigger a meltdown or out of control behavior. Going back to school is a huge transition and what her OT had been wanting to see how she handled before she could graduate out of OT. Week 2 proved to be pretty tough and I have to admit that we even looked into homeschooling at one point. Thankfully an OT visit, changes in our night routine, and getting settled set us back on the right path. I was trying to stay on our summer routine when she needed more physical activity without thinking that she was coming home mentally exhausted and just needed to be mellow.

The last couple of weeks have been better and our thoughts of homeschooling are fading. In the darkest moment of daily meltdowns I was worried that she was losing the progress we made. Now I can see that it was a wobble. I’m sure we will have more wobbles in the future, but it’s getting easier to see that even though the path in not always straight it keeps marching forward.

6 months later

It’s kind of bananas that we are at the 6 month mark with OT, but Ruby recently had her 6 month evaluation. I’ll spare you all of the details, but she showed great improvement. She was average in most areas, a couple below averages, but no dysfunctional ratings. The plan now is to taper out of OT. She’ll do two sessions a month for two months and two months of just one session. That will carry us through until school starts and they will make sure she is transitioning well back into in school. We will be done with OT as long she is doesn’t have any regression.

Part of the evaluation was a questionnaire about what are the changes we have seen in her behavior in the last 6 months. There almost wasn’t space to write it all! The biggest things we have seen is she hasn’t had a full meltdown in months, she is overall calmer, and she’s just present more. There were times in the past when she was so overwhelmed that she couldn’t have conversations with us or just repeated certain phrases over and over. I feel like our relationship has improved dramatically.

I can not say enough good things about Occupational therapy. We were all in a bad place before she started it. There were so many behaviors that we didn’t understand, but they had explanations for and ways to cope with them. The hardest thing is feeling helpless and that you are doing something wrong. Turns out we were, but only because traditional parenting wasn’t the answer. I know there are a lot of people that don’t understand and even some people that don’t believe sensory processing disorder is real. It’s hurts my heart a little, but the only thing I can do is continue to help Ruby and share information about it.

Overall, I’m feeling better and less stressed too. I do realize I hover too much and I need to step back to let her rely on herself more. 6 years of daily hour long meltdowns or worrying if she’s going to spit in another kid’s face at the park tend to wind you tightly. Each successful outing is helping to unwind that tightness. I probably won’t update this blog as much, but feel free to reach out if you have questions.

Progress

I’m always afraid that if I say something out loud I will jinx it, but I feel pretty confident in saying Ruby has turned a corner. Overall, transitions are easier and she has been calmer. In times when she has been overstimulated she has gravitated to things that calm her and rarely melts down from it. One of the biggest successes is she didn’t meltdown after we left her Grandma’s house. The combination of a 2 hour car drive, excitement, and a different environment always meant leaving in tears. She did get overwhelmed at one point, but asked to be covered up until she felt better.

Life is not perfect and easy, but I’m sure everyone can say that at times. I do feel like our life is calmer and the knot of anxiety I have carried with me is finally releasing. I no longer get as stressed when Ruby gets overwhelmed, because I have more tools to help her calm down. Yes, there are times when she throws the tools at me, but those times are happening less and less.

One of the things that helped me in the beginning was all of the people that reached out and told me about their experiences with their child and how it gets better. I would remind myself of that when we had hard days or weeks. I’ll keep updating, because hopefully our successes will help parents that are in the dark times.

Vestibular

I have been dreaming of installing a swing in the house ever since I started researching Sensory Processing Disorder. It is a great Vestibular activity that can help with calm and focus. I knew Ikea had an inexpensive one with good reviews, but it took awhile to find the time and energy to make the hour and half trip to the nearest store. All the stars aligned yesterday, so I put together a sensory bag full of goodies, crossed myself, and off we went. There was a minor meltdown before we left, but honestly I couldn’t have asked for a better day. We found the swing, a dog, a rat, and few things we needed for the house.

It took a little measuring and some extra holes, but my wonderfully handy mom got it hung today. It was a hit and the kids found all kinds of games that mostly involved one kid swinging and other trying to avoid being crashed into. There were also plenty of times throughout the day where Ruby would swing by herself for awhile. It really was what I had been dreaming about since I first read about how important vestibular movement was for kids and especially kids with sensory problems. The kicker with SPD is what works today generally doesn’t work tomorrow, so I know the day will come when the swing won’t help. I do have some different diy swings pinned with the intention of making them before that day comes.

Along with the swing we also found a pop up cube that the tunnel we have attaches too. I almost said no to it, but I’m always thinking of small calm spaces. Having the tunnel attached means the kids get a good feel for their bodies as they go into a mellow little space of their own. It is the perfect spot to chill with your dogs while watching movies.

And now I feel like an ad for IKEA, but they seriously have so many things on a budget to help with a sensory kid. So many times people tell me how great it is that I do so much for Ruby. I do so much, because it makes our lives easier and better. It is as much for my sanity as hers and I’m sure they would do the same if they knew it would help their child.

Tricksy

Last week I celebrated all of the successes we have seen, but this week I’m reminded that SPD is tricksy and what worked yesterday doesn’t always work today. Ruby had two sensory meltdowns this weekend that were tough. They were easier in that she wasn’t hitting or biting, but she was spitting and generally checked out. The hardest part is watching her do and say things that she wouldn’t say when she wasn’t in the middle of a meltdown. We can usually spot when she is starting to get overwhelmed, but both snuck up pretty quickly. I try to remind myself that is a process and not to get discouraged.

We were in public for the first one, so we quickly headed home to help her calm down. I guided her to our bedroom to try to get her away from any stimulation and gave her a few minutes alone. When I came back I found that she had covered up with pillows and blankets. She calmed down enough to talk and play with her brother, so I ran to Joann fabric to get supplies for a weighted blanket.

I had been meaning to make a weighted blanket for some time, but had just kept putting it off. Seeing her create weight to calm herself made me realize I had to make one. She has used it off and on throughout the day and slept with it since I finished it.

Tonight as Ruby was settling to go to sleep we were talking about her day. She was telling me about how much she wanted to get more points for good behavior, but how hard it is to do what she needs to do. It breaks my heart to know how much she struggles sometimes. That she has try not to get overwhelmed with sounds, textures, and sights all while sitting still and following directions. I have some whoa is me moments when things are tough, but I have to remind myself to stay patient, because it’s even harder living it.

Progress report

One of the sensory processing pages I follow recently asked what small improvement have you seen in your child. I sat there trying to think of what to post and at the time I couldn’t think of any one thing. As the day progressed I started to notice things. Ruby came home from school and kept the same outfit on until bedtime. It seems unimportant, but before she would drop everything as soon as she got inside in order to take off her clothes or put on a loose fitting costume. She has been wearing her headphones less and we even had a pleasant trip to the store without them. She has even been more willing to try new foods and has discovered that she likes grape flavored things.

The biggest change and the one that made me tear up happened this morning. Before I knew that Ruby had sensory processing disorder we used to have battles over me walking her into school. I cringe thinking about it now, but I was determined that she be more independent and thought she should be able to handle it. After I finally understood how tough it was for her to walk into that whirlwind of sensory overload I gladly walked her in. Today Milo woke up with a stomach bug and I didn’t want to take him in with us, so I asked if she walk herself in to class. She said yes without argument. When we got to school I expected at least some sad eyes, but no. She said bye mom, waved, and headed into the building without a backward glance.

Life isn’t always easy. I’m sure you can say that with any kids, but it’s getting there. We still have a few more months left of OT and I’m excited to see more small victories.

Holidays

We are five weeks into OT and I can say that I’m seeing a difference for sure. The days where she is overstimulated for hours are getting less and the meltdowns are way better. One of the biggest indicators is that she is actually eating three meals a day most days. We take for granted that we have an internal sense that tells us when we are hungry, cold, or need to use the bathroom. It is the sense that integrates last and it is hard to listen to when the other senses are overwhelmed. Also I found out tonight that she actually ate pasta with tomato sauce. I was sick, so my sister took Ruby to OT. I have to say I was shocked. Her OT report said she tolerated the red sauce, but that is the first time she would even try it since she was a baby. It’s reassuring to see progress, because in my dark times I was afraid we wouldn’t.

The other indicator of progress is we all survived and mostly enjoyed the holidays. Milo’s stomach bug put a damper on things, but there were no major meltdowns. Lots of overstimulation, but it was manageable. We also learned that maybe some traditions need not be carried on and that’s okay. We always go out to breakfast Christmas morning and this year it was just too much. Plus I make a better breakfast!

I’ve never been a huge New Year’s resolution person, but I think this is the year that I focus more on managing my own stress. I’m not sure where I will start with it, but I see more yoga, knitting, and reading in my future. There is a correlation between my stress level and how I handle situations. I owe it to my loved ones to handle things calmly. So here’s to a brighter, calmer, happy year.

Olfactory

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.

What does it all mean?

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.

Results time.

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.