Sensory Processing Disorder
Medical Disclaimer: This is my experience, and some of my emotions and what we do as a family for our Classic Galactosemia child. Always consult with your medical team about treatment and diet for Classic Galactosemia. The contents of this website, such as text, graphics, images and other material are intended for informational and educational purposes only and not for the purpose of rendering medical advice. The contents of this website are not intended to substitute for professional medical advice, diagnosis or treatment. Although we take efforts to keep the medical information on our website updated, we cannot guarantee that the information on our website reflects the most up-to-date research.Always discuss with your medical provider!
Disclaimer: Links provided are stuff I personally use, but I also get a commission for click and buy at Amazon. I will not recommend anything I do not use first hand or have tried.
What is Sensory Processing Disorder?
We have 5 senses, smell, touch, taste, hearing, and sight. Our senses work together to give us input from our surroundings to keep us safe. Sometimes the signals are off and it creates an imbalance. People with Sensory Processing Disorder can be effected by one or more senses. Disruption can cause a variety of symptoms. They may have hypo or hyper sensitivity to that sense. It is a spectrum disorder, each person, can have a wide variety of symptoms in responding to their senses. It is not recognized as a medical diagnosis which is a shame because interventions really help with speech, eating, and coordination.
For Perspective:
Think about when you go to the dentist and they shoot you up with Novocain. The senses in your mouth have been turned off. Your mouth cannot send taste, pressure, pain, or hot/cold senses to your brain. You will have a few temporary sensory issues. Have you ever drooled after the dentist? You need the muscles in your mouth to work together to control drooling. Then dentist usually warns not to drink anything hot because you may burn your mouth without knowing it. You may accidentally bite the side of your mouth and not feel it. It’s an extreme example but it’s to make a point. This is a very real experience to people with this disorder. Your whole body is constantly using your senses to send signals back and forth from the brain to the body to adjust to its environment and keep safe. If this is imbalanced you may have a harder time adjusting to your environment.
Our Experience and Journey:
In our journey we didn’t notice right away that our child was sensitive. I just thought I had a fussy baby. Swaddling, sleep sacks, and carriers were super important to help her as a baby. She cried so much and needed lots of comfort. She threw up a lot too. I thought I was doing a bad job all the time. Why did she cry so much?
***If I could go back to tell myself how great I was doing. I would! I know how hard it can be.**
Around her 1st birthday, she started walking and exploring her world. At this time I started to notice she was unique. She wouldn’t engage like other children and would become overwhelmed very easily. We tried dance class for the first time and it was uncomfortable for everyone. She loves dancing and music. However, at dance class in a matter of 5min she would crawl to the corner, start gently pulling her hair, and crying. She would be hysterical to the point of vomiting. I tried a couple of classes and it was just too much for her and for me. I tried to explain to the teacher we had some stuff going on, but she had too many kids. We dropped out. I cried because I didn’t know what I was doing wrong. We took her to see a friend’s soccer game and she lost it as soon as we sat on the grassy field. I walked off the grass and then she was cool as a cucumber. It was mind blowing as I was putting the dots together. I am a nurse so in my head, I am constantly doing a head to toe assessment and assessing lots of details. Sometimes I think I am craay-cray, but I am usually right.
My daughter hates the feeling of sand between her toes, wet paint, wet grass, anything dirty or sticky on her hands or feet. Anything too vast like a huge field or beach is overwhelming. She’s not a fan of foam, or slime. Don’t get me started on silly string, it’s not silly. She sounds like she is in physical pain when over exposed to textures, or stimulus. She needs lots of holding and touch for comfort when she is having bad days. Her mouth is super sensitive and she gags when I wipe her mouth. Because of covid-19 we now have to wear masks and she gags at that. (If I could insert an eye rolling emoji here I would.) She has enough work. Her neck is also super sensitive, if a shirt is touching her neck too high or tight she will panic and gag. We had a puddle jumper in the pool and it took us about two week to notice why she was throwing up in the pool. The puddle jumper hit her in such a way that she threw up every time she was in the pool. Food textures make her gag. She is very sensitive soul.
One other thing I also notice about my baby is that she is also super sensitive to others and their feelings. Amazingly she can read you like a hawk. She will get upset and start crying if she hears another kid cry and will drag me by my hand to fix babies of strangers. She is a super picky eater, only eating a handful of foods. She also craves salty foods and licks the salt off of chips and crackers and leaves me a bag full of soggy chips. She craves intense flavors. From what I know now, it is common for sensory kiddos to crave more flavor. These examples are just the short of it.
At the beginning, when we were figuring this out, we had speech therapy for her. The therapist was not very good, and gave little to no advice or intervention. I thought I was being an over-the-top helicopter-nurse mom. I have learned to trusted my gut and I asked for an OT eval. OT came and validated everything we were going through. As a result, I got another speech therapist to try, and she was amazing. Penelope has a lot of little sensory things that add up and there is a lot about my daughter I am still learning. Her environmental struggles reveal themselves as we explore the world. She has good day and bad and some times regresses. I really don’t know what she will be sensitive to until we get there or I expose her to it. Having a good team to help you is a really great start.
SOLUTION #1:
I have lots of ideas that I have come up with on my own, that OT recommended, or finds on Pinterest. But first, and most importantly, my emotions need to be in check. Be patient! It’s easy to get frustrated. It’s easy to get overwhelmed. It takes time to get over sensory issues or even just to manage life long struggles. Second, Acceptance! This is one of the biggest issues I had to get over. I think it can be a hard to really understand that this is not a behavioral thing. She is not doing it on purpose or for attention. I don’t not know how many times I have been thrown up on. My kiddo gets high fives and stickers for making it to sink, or toilet. It can be frustrating that she throws up and we need an emotional/mental break or that we have to leave. Today, it is just our way of life and don’t put too much thought into it. It’s second nature. I sometimes warn my family and friends before we do anything different that this may not work, but we always try. Strangers sometimes stare while we handle vomit and crying. Add covid-19 in the mix, and they think she’s contaminated. It doesn’t mean we don’t try again or go back to the same places. We are for the most part pros at managing sensory days. My daughter has her ways of processing, I go with her cues. I am gentle, patient, slow, but ever so persistent with exposure.
Ok let’s get to it:
SENSORY OVERLOAD SOLUTIONS :
**Remember that these might not work for your kiddo but it is important to always trial and error for solutions and discuss with your medical and therapy team. There are a lot more ideas than I posted here. There are some really creative smart care givers out there. They are coming up with new stuff all the time on Pinterest. My inteventions are very specific to my daughter. Once you find your combination of interventions it will be like second nature. Always talk with your provider about solutions. Never push your kiddo to the point of hysterics it just creates trauma and resistance. You need to find a happy middle.*
Puppy pal was not a success, defiantly an “Ehh not so much.” However, a weighted blanket was a great solution. This is why it’s important to try it all out. There are plenty of kids that like the weight pal. Amazon is great with returns, we just returned the puppy pal and got the blanket. Weighted blankets and weighted pals are kid-weight specific so make sure you talk to a medical provider about what to use, and how to use it. Be careful and aware they come with parameters, age limits, and safety parameters. Too much weight is not good, risk for suffocation, and not for sleeping, for the same reason of suffocation so really talk to your provider.
She dropped the pacifier around 15 months. She cannot have a bottle in daycare/school, so she does drink from straws, cups and tumblers. However, when she needs something soothing I give her favorite chocolate bottle. We recently had two weeks of throwing up and tantrums everyday. I told my OT that she really likes to chew the bottles for comfort and she recommended chewy toys and chew necklaces. She did give a disclaimer you might not want to start into that for habit reasons but it is great for oral stimulation. I got chew tubes with various textures and densities. Some are harder to chew than others. But I noticed a big difference in her gaging. At first she gaged but she got use to it quickly and likes the oral stimulation. They are almost like Nuk brushes.
A medical provider or OT need to show you what to do so please ask about brushing first. There are also parameters on this. But it works really well for us. I find it is easy to get out of the habit when rushing out the door. When we were first advised my therapist said to do it every two hours for two weeks. OMG for real?! But it was good for us. Penelope hated it at first but now brings the brush to me. It’s relaxing to her. I brush her before we got out, or to school or when she asks. They say the effects last for a few hours.
Breathing and Meditation
Like I said its not for everyone, but we came up with a breathing technique called “smell the flowers.” You are probably like what?!!? Meditation for a 1 year old? Just give it a try, they pick it up faster than you would think. There are cute little breathing story books and youtube guided meditations for kids. Don’t get frustrated. If it’s not for you, and your kiddo, just move on to the next solution. I just recommend giving it a 100% try at first. I was really skeptical of this. We are also big fans of Cosmic Kids yoga so much fun. Frozen and Spider man themed yoga. Check my other article for details on our “Smell the Flowers” meditation.
We have a “sensory overload” tool kit. This has become second nature and I don’t even think about it. When she is about to tantrum, I get my supplies out. Its usually, a chocolate ba-ba, weighted blanket, and a quiet space with white noise(a fan or ocean waves). She takes a mental time out to gather herself. She will even politely kick me out of her room for quiet time. On really bad days I have to put some of my to do list on hold and pay her lots of attention, and cuddle. She really likes gentle strokes on the side of her face and forehead. I don’t set myself up for frustration and disappointment because she is having a melt down. I have become very flexible to her needs and I accept she needs me. Can it be frustrating? Do I have bad days too? Yes, I am not perfect. I highly encourage going on adventures and exposing your kiddos to as much as possible even though it may not go as planned. A little exposure at a time helps the senses. I understand a trip to the petting zoo can turn into a processing overload but it is important kids are exposed to different things and you keep trying. Don’t hide from it. Its important to know their weak points so you can work on them with your therapy team. It has been a learning experience to say the least.
Activities that help us desensitize:
Sensory Boxes: Kinetic sand link:
This took a lot of patients and time. I mean a dime sized amount of foam would send her out of the room. We did foam play apart of OT once a week for almost a year and she still is a little resistant. She did not like sensory boxes at first. Sand was not her friend. Outside of therapy, I just put the box on the ground for her to process in her own time. There are tons of different types of sensory boxes on Pinterest. I started with a box of purple kinetic sand. Simple, not overly complicated. Some are filled with all sorts of textures but that might be over stimulating for some like my kiddo and working up to that is more appropriate. I find if I just leave the box out instead of pressuring her to try she is more willing. Or if I play with it by myself she starts asking to use it. She has her own way of accepting information about textures. If I push her too much she becomes resistant. Finding a happy medium is important. I had a discussion about this with my OT . When Penelope is given a task she is rewarded emotionally when she completes it. If it’s too hard she will not be emotionally rewarded because she can’t finish the project. We were working with putting beads on a string. Penelope was frustrated and did not want to participate because she wasn’t successful enough. I improvised, got a wood skewer and placed straight up in play dough. The skewer was more stable than string so she could “string” the beans on the wooden skewer. I think Pinterest is great place for ideas. On the days you need to improvise you will have ideas.
Kitchen Play:
One thing I stumbled upon was getting my kiddo involved in the kitchen. I did it at first just so I could get things done and entertain her. I have a stool she stands on to reach the kitchen counter. I think I had play dough to make pretend cookies. At her own pace, she can play and touch all sorts of things. We progressed to touching and naming actual ingredients. She’s two and can crack eggs. Cracking eggs takes pressure control and acceptance of the slimy texture. Messes are important, do not be afraid to make a mess. Think about it. My girl is already upset at messy hands, if I freak out about messes it just reenforcing that messes are not good. You need to be comfortable with temporary messes to help them be comfortable with textures. There are days I have flour, paint, water all over the place. My mom calls them happy messes. At the start of our kitchen play, she would only eat a few things, yogurt(only in a bottle) fries, a variety of crackers, chips, chicken nuggets, and ripple bottles. I had to supplement her diet with plant based protein drinks. Over 6 months of kitchen we made fried rice. She touched, smelled and licked ingredients. Once dinner was cooked, she stood on her stool, filled up a measuring cup and tried to spoon herself the rice. I think, I even had a video, I was so proud of her. I mean fried rice is highly textured, so for her, this was a miracle. She couldn’t get it in fast enough, gave up on the spoon and face planted her self into the rice. This triggered more sensory play through cooking and baking. I want to say we started in August and by May she was eating so many different things her nutritionist asked what we did different.
Mouth and Eating:
This is tricky. I am sure every kid has their process. We started off with a rubber mouth brush called a Nuk and once she got the hang of that we graduated to a vibrating tooth brush to help stimulate and desensitize her mouth. This took months and was not an overnight solution. Before this, toothbrushes, spoons, forks, lollipops and popsicles would make her gag. We have done a lot of work with ST and OT for her to overcome her oral processing. I feel like her hands and mouth are connected when it comes to sensory awareness. Once she gets confident with touch, her mouth senses get better too. I put new foods out on her table all the time. I usually will make a dinner plate for her know that is really going to be for me. If she eats it, she eats it, if not, no big deal. When she is hungry and wants something else later I will give it to her. I found she has to play with her food a few times before she will actually try it. That’s why kitchen play is so helpful. She touches, smells, and licks the food, like little dabs on her tongue until she is comfortable. There are good days and bad days. She gets high fives and lots of praise when she tries new food. The whole family makes a big to-do about her tries.
Bath Time:
I think bath time is a great place to start to get messy. Soap-paint, colored foam, colored bath tabs, bath bubbles, or shaving cream play helps to desensitize the overwhelming sense of texture. My daughter could explore the paint but could wash her hands off right away if it was too much. I place a long line of colored foam on the bath ledge and place her favorite bath toys in the foam. I don’t force it, I just left it, and eventually over time she started to pick them out the foam. I did it ever bath time whether she touched it or not.
Just a note, Isolation during Covid-19:
As of late, we have been isolating because of Covid-19. We started to go out again and she was overwhelmed at places she typically enjoys. We went to a very small petting zoo. She got so excite, she gagged the whole time and we eventually had to exit so she could throw up. Another day, I took her to a slash pad she has been to a million times and again she started gaging again. Just so you know you are not alone I bet a lot of other kids are going through the same things. After months, weeks, of isolation we are now leaving the comfort, familiarity and structure of home. Regression is to be expected.
Medical Disclaimer: This is my experience, and some of my emotions and what we do as a family for our Classic Galactosemia child. I want to share what we experience. Always consult with your medical team about treatment and diet for Classic Galactosemia. The contents of this website, such as text, graphics, images and other material are intended for informational and educational purposes only and not for the purpose of rendering medical advice. The contents of this website are not intended to substitute for professional medical advice, diagnosis or treatment. Although we take efforts to keep the medical information on our website updated, we cannot guarantee that the information on our website reflects the most up-to-date research.Always discuss with your medical provider!
