My job as the mother of a child with extra-special needs (one of which is a difficulty with speech), is to be a mind reader. I have to know that “pla-pl” is pretzle, but it may also mean puzzle or sometimes even play or paper or jacket, depending on the circumstance. We play a lot toddler charades at my house – but I have come to understand his own little bits of speech. So as a mind-reader, I thought I’d share what JC’s day is like – from his point of view. Each of these scenarios has happened at least once over the past week. Not usually on the same day – but sometimes, we have one of those really bad days – and it is very much like this.
My name is JC. I am 2 years old. This is my day:
I wake up feeling snug and warm in my bed. When I open my eyes, the light is too bright so I try to bury my head in the pillow for a while. When I get out of bed, the floor feels funny on my feet so I find my shoes and cry to put them on. I look for my brother because we always have breakfast together. If he isn’t ready yet, it upsets me because I need things to happen the same way each day. I eat rice toast for breakfast because it’s the only thing that doesn’t feel yucky in my mouth. It is very dry and chewy so it doesn’t make me gag. Other foods make my tummy hurt or just feel weird in my mouth, so I stick to dry toast. After breakfast its time to brush my teeth. I love to squeeze the toothpaste on the toothbrush, but there is no way its going into my mouth! Mom tells me “1-2-3” so I know there will be an end to it. So I open my mouth just a little and let her get the brush in. She says, “1….. 2….. 3” as she brushes my teeth and as soon as I hear that “3” – I pull away. That’s all she gets!
Time to get dressed. I try to run away or cry when mommy takes my pajamas off. I don’t like the cold air and the rubbing of the clothes on and off of my head and body makes me cry. Diaper changes are no fun either because I have to lay on my back really still. I try to make it easier by choosing my own diaper – I like the ones with Mickey Mouse. Controlling things makes it easier for me to cope. Once that is finished (and my shoes are back safely on my feet), it is time to leave. Brother is going to school, and so am I! That means that brother needs his bookbag so I take it to him. I am being helpful, but it also helps me feel more in control and less anxious when I know the schedule and what to expect, especially with all of the movement and busy-ness of the morning. Today, he isn’t ready to take his bag because he is putting his shoes on, but I don’t understand why he doesn’t just take it – so I scream at him. He takes the bag and finishes his shoes later. As we walk out the door I get to push the garage opener. I count down “nine, eight, go!” As mommy puts me in the car I make sure brother is getting in too. Do I have my bottle? Where is my tablet? Ok, we are ready.
On the way to school, I scream because the sunshine is too bright and it feels like knives in my eyes. Brother is singing with the song on the radio and I can’t stand the extra noise so I yell at him to stop. When we get to brother’s school, I cry because I don’t want him to go – or maybe its because I want to go with him. Mom turns on my music CD and it calms me. Mom drives through downtown and I know that my school is close, but she turns the other way. I scream because she was supposed to take me to school. She tries to explain something to me about going to the bank first, but it doesn’t matter – we were supposed to go to school! She tells me “bank first, THEN school”. Well, ok -
I like school. I like to play and do art projects. I know what to expect at school. When I go in, I say “Hi” to my teacher and then I get to choose my favorite toy. Then we have circle time and read a book. After that its art time and then snack time. Snack times are hard for me because I can’t eat what the other kids eat. And sometimes I don’t want to eat at all. When we have a special party, mom makes sure to bring something that I can eat too. But watching all the other kids have cookies makes me want one and I don’t understand why I can’t have one too.
Today, when I walk into my school, my teacher isn’t standing at the doorway like she usually is. It makes me feel like everything is wrong. What do I do now? I need that consistency to make my day easier. There is a new person in my room instead of my teacher. I look at the floor and don’t make eye contact. I wander around because I don’t know what to do next. I didn’t get to say “hi “to my teacher like usually do, so everything seems upside down. When things don’t happen the way I expect them to, my, its hard for me to “re-program” my mind to a new set of circumstances. Mommy sees that I am upset so she tries to explain to me that my teacher will be back tomorrow. She shows me things that are familiar to me. It takes a while, but I start to warm up and I realize that my classroom is the same – the teacher is just different today. Soon, I am able to have fun and play again.
Some days I go to music school. I love music! Its hard for me to sit still and participate in a new activity. There are so many sounds and I get overwhelmed easily. That’s when I try to escape by running around the room and hiding under the table. I like to be under things and behind things because it makes me feel safe. So i turn it into a game - you can’t catch me! I like to use the bells and shakers, but when everyone is playing them at the same time it hurts my ears. Some days I don’t realize when I am getting overwhelmed and over-stimulated until its too late. I cry or I bury my head in mommy’s lap or shoulder and close my eyes tight to try to make all of the sights and sounds go away. Sometimes mommy rocks with me or swings me to help me calm down. And sometimes she has to take me out to the hall to get a break from the sounds and people. When we go back in, I am able to participate more. I love to dance, and jump and spin! All of that activity helps to calm me too! . When music class if over, I get to put my shoes on (YAY!) and get a stamp on my hand (double YAY!). Time to go home.
It’s lunch time but I don’t want to eat. My belly hurts but I don’t know that it is because I’m hungry. Food always hurt me so much, so I stopped eating. I like chips, crackers, and toast mostly. Mommy makes chicken for me with rice. Rice is also one of my favorites but today I don’t want to eat anything. So I don’t. I have a bottle instead. The bottle has never hurt my tummy, or my mouth. And it calms me down after a long day of noises and sounds. Naptime.
When I wake up, mommy and I play. I love puzzles and cars and trains. This is a peaceful time because its just me and mommy. There isn’t any noise and I get to work with mommy on things to help me talk better. She calls it therapy, but I just think its playtime. Today mommy has to go to the grocery store. I like the grocery store – there is so much to look at and so much to touch! I want to experience it all – and all at the same time! I want to run through the aisles, I want to touch all of the food, I want to scream loud to hear by voice echo, but also to drown out the rest of the noises that I hear. But pretty soon, I start to feel upset and anxious. I want mommy to hold me. I want to leave. She tries to give me a snack, but that only works for a little while. I try to play the games on my tablet, but its too hard to focus. When we are finished we wait in line. I don’t want to wait… I want to leave… NOW! We finally get in the car and its time to get brother from school. Mommy plays the music again to help me calm down.
I am so happy to see brother! When we get home, he does homework and I color. He tells me what the colors are and I try to say what he says. After he finishes, we play. I love my brother, and I love to play with him, but sometimes he doesn’t understand me. I can’t talk very well because I don’t know how to make my mouth say the right sounds. So I usually just yell and scream until someone figures out what I want. Brother has a toy that I want so I cry “ahhhhhh!” until he gives it to me. Mommy says that I should say “have it please”, so I try – “ha i pwe”. Close enough. But I don’t remember to use those words the next time. When I get upset my brain can’t find the right words to help me. My tummy starts hurting again, but I don’t understand how to make it stop so I am just grumpy. Mommy says its snack time and asks if I want some crackers. I stand at the pantry with the door open and look for something that would feel ok in my mouth. Nothing seems to make me happy, so I just eat crackers.
I want to go outside, so I stand at the door and bang on it while I yell at her. She tries to understand me, but its hard because I can’t tell her what I want. When we get outside, the sun is so bright that it hurts my eyes. I want to play, but I keep getting more and more grumpy. Things just aren’t right and I can’t fix them. The air is too cold, the sun is too bright, the ball feels too bumpy, the car is too hard to push. I cry and mommy asks me what is wrong and what I want. I just don’t know! I want to feel better so I try different toys to see if anything is fun, but they are all frustrating to me. So I cry even more. Mommy takes me inside and we snuggle while I have another bottle. I feel better.
When Daddy gets home, I am happy to see him. We play and wrestle – with brother too! Sometimes, running, jumping, climbing, wrestling and rough play help me feel better because it gives my brain something to focus on and respond to. But when we are playing everyone gets loud and it upsets me. I yell at them to stop. Its just too much!
At dinner, I eat toast again – mommy puts sauce on it and calls it pizza because that’s what everyone else is eating. I like it, but I make sure to only touch the outside – I can’t stand to have the sauce on my hands. I eat a few bites and have a juice pouch. Mommy always puts a sippy cup on the table for me, but its too hard to drink from. Plus, I hate the feel of the hard rubber in my mouth. So I never drink from it… but a straw is easier so mommy keeps juice pouches handy.
Bath time is my favorite. I love the feeling of being in the water. But mommy pours the water over my head and I scream. Why is she doing that! I don’t want water on my head – STOP! She tries to hurry, and she says “1-2-3” again – but I don’t’ care… no water on my head – EVER!
Now i’ts time for a book. I love my bedtime routine. I get to snuggle with mommy and brother. We read books and then brother goes to bed and mommy lays with me while I fall asleep. I listen to the same song that I have listened to every night since I was a baby. It calms me and helps me know that it is time for sleep. Night Night Stars, Night Night Moon….. Goodnight