Jan 18 / 2019
A Letter from Micah: Living with SPD
Category : Motherhood, My Family, Personal, Words on my heart
Many people have told my mom that I am such an “easy baby” or an “easy child” because I don’t get into as much mischief as other kids, but there’s a secret reason why. I have a hidden handicap called Sensory Processing Disorder (or SPD). It’s a neurodevelopment disorder the affects my brain and makes it different from your brain. SPD is a complicated disorder and research is only just starting to come out about it. What we know already is that kids with SPD are not all the same. Some kids are over-responsive to sensations, which means the find a lot of sensations offensive. This causes them to have a fight or flight reaction to messages from their senses. Other kids are sensory under-responsive, which makes them seem not to feel sensations much at all. Some other kids don’t feel pain or they can swing or spin for hours without getting dizzy. These kids get called hyper a lot because they’re in constant motion and seem obsessed with touching things. Still another kind of SPD makes children look clumsy and awkward, which causes people to laugh at them for being “klutzy”. Most of us with SPD have pieces of several of these subtypes all mixed together and don’t fit neatly into just one category.
I’m still figuring out exactly how I fit into which “subcategories” but I am generally over-responsive to things and can act out emotionally or withdraw when the ordinary world is too much for me. I also struggle with gross motor skills (running, walking, jumping, riding a bike, or playing outdoor games). I hate it when anyone comes up and tries to hug me or hold me in their lap without warning. If you ask nicely I may physically interact with you, but I will often shout “no” and run away. Part of this is because I’m three and think it’s funny, but the other part of it is my disorder. Feeling someone touch me is often really hard. But if you let me move at my own pace, I just might surprise you and crawl into your lap. Mom says my brother is like a puppy, but I’m more like a cat. I’m not sure what that means but you probably do because you’re a grown-up.
Also, what a lot of people don’t know about me is that I’m naturally quite low energy and introverted. When people come over or when we go out and about there are so many sights, sounds, movements, etc. If I’ve had a good meal and lots of sleep or some nice time away from people, I can often handle this gracefully, or as gracefully as a three year old can. If I have had a lot of stuff happening lately (like on a preschool day), I may be aggressive, moody, bossy, and have what my parents call “melt downs”. I can also go the opposite way. Sometimes when there’s a lot going on I get super hyper and almost manic. I run and scream and get incredibly silly. Most people think I’m having a great time because I seem so stoked about life. What they don’t know (and what I still don’t even know fully about myself because I’m only three) is that this is going to lead to a huge emotional crash. It might be while everyone is still around, or more often it is later that night. Sometimes I bottle it up and explode the next day. Once when my baby brother was born and I had my first double night sleepover, it took me six whole days to regulate my emotions again. It’s really hard to know when I’m just having fun and when I’m crossing over to the manic level that makes the crash come harder and sooner. If you’re not sure, you can always ask mom or dad because they know me best. Or sometimes mom or dad will suggest a quiet activity when we’re in the middle of tickling and running around. I won’t want to listen to them, but if you could, it will help me enjoy life more later because when I crash I get really sad and angry for a long time and that’s no fun when you’re a kid.
If I do have a “melt down”, don’t worry. Mom and dad know how to help me bring my feelings under control. Some things you can do to help are please don’t try to distract me with something else. I’m actually really smart and it makes me so angry when you try to show me a different toy rather than letting me work through my emotions about the one I am not allowed to have for example. I need to get my emotions under control before I can move on to the next activity or item. Mom and dad will get my attention and ask me if I can calm myself down or if I need to go in another room. This is not a “time out” for being bad they tell me, though. It’s because I forget that it’s not loving to scream right beside people. They tell me it’s okay to scream and it’s okay to be mad but I have to come and do it off to the side. I forget this every time because I’m three. But they’re good at reminding me and you can do the same too if you’re looking after me. Also please, PLEASE do not try to hug me if I’m upset. I’m already in overload and that pushes me even further. You can ask if I would like a hug when I’m calmer and I may or may not need one. Also, if you can avoid direct eye contact with me during a tantrum if you notice it’s making me scream louder that would help a lot. Again, I’m often melting down because my senses are over stimulated and more intense visual contact only adds to the problem.
Let’s talk about food for a bit. Mom and dad say that I’m a picky eater even though I don’t seem picky to me. It’s just that the feel and taste of certain foods in my mouth bother me so much. Please don’t force me to finish my plate or eat something I don’t want to. Mom and dad have tried and I literally can’t bring myself to swallow it and I will sit there and cry with my head tilted back to hold the food in because the sensation of it coming back out of my mouth makes me cry too. Mom and dad are working hard at slowly introducing me to new foods and encouraging me to try things, but it will take time. I also may get upset if you put my plate down and different foods are touching each other. You might not notice a slight change in taste if a little sauce gets on your piece of cheese, but I do. And then I can’t eat the cheese and that makes me sad because cheese is my favourite food. Other times I will surprise you and not care if my food touches. It all depends on how “regulated” I am feeling. I know that makes it hard because you never know what to expect from me. It’s hard for me, too.
As far as activities go, I’ve learned a lot this year about myself. I know it can be hard to go to a big party or busy environment. In fact, places like that usually make me either go manic or fall apart because I feel like the whole environment is out to get me. Sometimes it sneaks up on me. I’m having a really fun time, but then suddenly I am not. I am working hard to learn to contain my feelings and we also try to limit the number of situations like this that I am exposed to while I learn this. Mom and dad try to make sure I only do one “big thing” a day if they can and not have something every day, for example. Big things for me aren’t always an “event”. They can be things like a trip to the park, going to IKEA, or even just going out to eat.
Part of me learning to control my feelings sometimes looks like me asking to watch t.v. Mom and dad let me watch a lot of t.v. The reason is because I only really need to focus on two senses (sight and hearing) when I do this so it’s a really good way for me to calm down if the environment is getting too much. They are careful to make sure I don’t use this as a crutch but as a tool because I’m still just little and don’t have a lot of ways to reduce the sensations around me. My quiet time in my room helps every day. If I miss this, the day is often harder. I go in there and play by myself for an hour or two each day while my brothers nap and I come out much happier. Sometimes I even turn off the lights in there because it reduces the amount of sensory input my brain has to deal with. And sometimes, during a larger gathering, my mom or dad might take me to a quiet room or outside for a bit. This helps a lot too as about 40 minutes at a party is my max without a break currently if I start refreshed and ready.
There are a few things you can do right now that will really help me:
1. Please don’t laugh at me when I fall down or when I cry over what seems like nothing. I know I must look funny and overly dramatic. Because I fall into the overly-sensitive category of SPD that means that when I hurt myself it can actually hurt more than you would think. Some kids who are under-responsive can hold a lightbulb and not notice it is hot until they are badly burned. I am the opposite. Even a light bump can make me cry sometimes. I often want you to kiss it better. Sometimes I hurt my butt or bite the inside of my lip and it makes it rather awkward for mom and dad to kiss better, haha! And I know I’m clumsy, but it’s because my feet and body and sense of balance don’t always send the right messages to my brain. I also don’t have a lot of words yet because my jaw and tongue muscles don’t always send the right messages to my brain either but I am learning to notice when people laugh at me and it makes my cry harder. Sometimes it makes me want to give up the activity and ask to watch t.v. to retreat which makes my mom sad to see. I’m getting better though! I couldn’t walk on rocky ground this summer but now I can and when I fall down I’m much better at getting up and trying again.
2. I don’t like surprises because they are hard to process. If you’re going to turn on something like a blender that makes a loud noise, or if we’re going outside where everything is so different (different smells, the feel of the air on my body, etc.) if you could give me a little warning I would love that. Even if you say, “Hey Micah, I’m going to turn the t.v. off in a second,” that helps a lot. Anything that affects my five senses suddenly being turned on or off can trigger me. It’s okay if you don’t remember all the time. Just be patient with me if I get startled and cry.
I know it’s hard learning to work around something like this. Believe me, I live it every day. I can seem unpredictable and volatile. And sometimes something that’s okay is suddenly not. Like for example, my mom let me hold a sparkler for New Year’s this year and I loved it so much I kept asking for another one. But then a couple weeks later, they put a sparkler on my birthday cake and I shielded my eyes and wouldn’t let it near me. Mom let me hold the sparklers right after I had a nice long quiet time in my room to play. The birthday cake was after a long day at preschool and right before bedtime. My ability to cope depends so much on my emotional reserves. But please don’t worry about doing something “wrong” or take it personally if I don’t react well. Mom and dad make me upset a LOT. And I’ll let you in on a secret – sometimes they don’t even know when I’m acting out because of my SPD or when it’s just because I’m three. But that’s okay. I know they love me. And if you love me too, that’s enough. I just wanted to give you a little glimpse into what my brain looks like for me.
I am like you in lots of ways and I am different in other ways. There will be a place for me in the world, and I plan to do great things when I grow up, and I’m happy I get to grow up with loving people in my life.
4 thoughts on “A Letter from Micah: Living with SPD”
Thank you for sharing that heart felt message, I love Micah and to me he is not different he is Special…one of God’s best gifts to the world…and you are all amazing..Love you all.
Thank you, Wendy <3
THANK YOU LAUARA FOR THIS TOUCHING LETTER FROM MICAH…IT WILL BE VERY HELPFUL IN RELATING TO HIM
WITHOUT UPSETTING HIM. WE LOVE HIM SO MUCH AND WILL BE VERY CAREFUL NOT TO OVERWHELM HIM WITH WANTING TO HUG HIM ETC. WHEN WE SEE HIM. WE WILL BE PRAYING FOR HIM AND YOU AND NICK AND KNOW THAT GOD HAS A SPECIAL PURPOSE FOR THIS PRECIOUS BOY. YOU GUYS ARE SUCH GREAT PARENTS AND MICAH IS BLEST TO HAVE PARENTS THAT LUNDERSTAND HIM, ESP. AT THIS EARLY AGE.
LOVE YOU GUYS SO MUCH…GRMA AND GRPA.
Thanks, Grandma! You are amazing great grandparents 🙂