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. 

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.

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.

 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.