I thought I’d write about a typical day with Peter. I realize that many people have never had a glimpse into our unique world so I thought I’d put it all in writing. I also wanted to have the opportunity to preserve this stage in life for the future. Time goes by so quickly and every day we are all changing and growing…this is just a snapshot of our little life.

• 7:15 A.M. The predictability of my morning routine is welcomed. “Hooray, a Mommy” greets me at Peter’s bedroom door. Then we sing the Good Morning Peter song. “Good morning Peter, good morning Goop, you’re name is Peter, Mommy loves you!” Then “Peter down!” and I scoop him up out of the crib. I fumble through the clothes basket to find him an outfit that will fit the weather, whatever it is, and we “hurry, hurry, hurry” downstairs. On the way downstairs we alternate counting the steps in a funny dramatic voice. I scoot to the kitchen to take some Tylenol a multi-vitamin and some Coke Zero, fix a “Mimi” (bottle) and plop on the couch to indulge my one obsession and enter my weight on the Excel Spreadsheet I’ve been keeping for the past 2.5 years. I check Facebook and email and then somehow it’s time to be off.
• 7:55 A.M. “We put on our dipe, we put on our dipe, we put, we put, we put, we put, we put on our dipe” Repeat for every item of clothing until dressed. Songs are how we get things done here!
• 8:00 A.M. We walk to MamaPapas (one word) as I try different songs “Old MacDonald” (bye bye MacDonald), Twinkle Twinkle (bye bye twinkle), ABC (bye bye ABC)…you get the point. This morning I strike paydirt when I finally arrive at “C is for Cookie”. Of course, by this time, we’re there. Grandma has breakfast ready and we saddle up in the high chair. She feeds him something nutritious and hopefully half of it doesn’t end up on the floor.
• 8:30 A.M. Speech Therapy – Miss Stacy arrives. We love her, she loves Peter. 45 minutes of singing and reading books and four adults making complete fools of themselves. Good times. We talk about dyspraxia and what the hell that means at the end of the session. Turns out that it means his motor planning abilities are off. As in, certain parts of his brain have problems telling his body what to do. I love Stacy’s ability to put things into plain English for me.
• 9:20 A.M. Crap, we’re late for Amy (Occupational Therapy) – we load up the car, and scoot to Amy’s clinic in Durham, Sesame Street CD blaring. Grandma and I do this one together on Mondays.
• 9:45 A.M. Doesn’t matter that we are late, Amy is late too. I am kind of relieved. Peter has a meltdown in the waiting room when another therapist closes the door when he is trying to sneak into the gym. He is screaming “Amy, Amy, Amy” and “bye-bye”. She still tries to close the door although I warn her. Then he bites her. Well, at least it wasn’t me this time.
• 9:46 A.M. Amy rescues us. Peter is still frazzled. She tries to brush him, but he’s not having any part of it. Brushing is supposed to help his sensory system organize itself. He goes in the “cloud” swing, on the “row, row your boat” swing, and then plays with Slime. Actually, it wasn’t as smooth sailing as it sounds. There was a great tantrum that involved his favorite Gagoo (Grover) puzzle. I was blissfully checked out though regulating my own senses on the “row, row your boat” swing.
• 10:30 A.M. We leave Amy with pouty face “bye-bye’s”. He cozies up to her and lets her kiss him. Geez, I should be so lucky. The Amy love affair has been going on since moment one though and I can’t be jealous. It’s just too awesome not to relish.
• 11:00 A.M. We are home, two therapies out of the way. Ma comes over because she is locked out of her place. She helps me pick up some of the filth in our house, while biting her tongue. There is a brief meltdown over missing “Papa” which is remedied with a Dora Yogurt and “Follow that Bird”.
• 11:45 A.M. Lunch – I feel guilty. Peter wants pizza 24-7 so sometimes I tell him that what he’s eating is pizza. Today he had ravioli pizza. Close enough, they are both starch and cheese. He ate good and didn’t fight at all, which was a miracle, but then again I had Ma with me and she has the magic touch.
• Noon Pops gets home and Ma joins him, they have a doctor’s appointment to get ready for. I start making calls. First to the bank to find out where my new check card is (my apartment in Winter Park – NICE!), the rep is sending me another check card and wants to know if I’d like it linked with savings. Sure, why not? She asks which savings account – the one with .04 cents or the one with .57 cents. I tell her the one with .57 cents and try not to laugh. She chuckles, but not in a mean way, in a I so get you way. Then I call my student loan holder to beg for another hardship deferment. Tavi tells me that his iron levels are 8 million times the normal and they think that he has a genetic iron deficiency that is potentially…um…fatal? More blood work and testing on Thursday. I picked a great time to quit smoking again. Fuck!
• 1:00 P.M. Spent the last 45 minutes with Peter watching a video while I googled “Iron Overload Disorder”. I don’t like the looks of this. I asked Tavi to go pick up some scallion pancakes from a Chinese restaurant up the road. I’m hormonal and jonesing for something greasy.
• 2:00 P.M. Mail has arrived and Peter’s Medicaid card has not. It should’ve been here by now. I fear that he is not covered for October. I spent hours earlier in the month fighting with SSI and Medicaid. Basically since there are 3 paydays in October we are “over income” for the month. So we do not qualify for SSI, which means that we do not qualify for Medicaid. Yes, they would really take Medicaid away from a disabled child because of a calendar issue. I thought I had it sorted out but now I am not so sure. I call the 800 number, wait on hold for 40 minutes, get hung up on, call my local representative and leave a message, leave a message for two other people in her office that have the misfortune of me having written down their extensions at some point. Wait. I won’t hear back today for sure. Should I go ahead and cancel Peter’s dentist appointment for mid-October? I decide to wait. In the meantime I box up some packages to send to people on the Wish Upon a Hero site. Sometimes, I like to grant wishes, usually pretty small ones…but something to make me feel like I’m giving back somehow. Of course, when will I ever make it to the post office?
• 3:00 P.M. “Bath? Water?” Peter has requested bathtime. Right on cue. I ask him at the top of the stairs, which he counted again, what color bath. He says blue. We have food coloring tablets. But he always says blue and I am running low. I give him red. He notices. “More BLUE! More BLUE”. I wonder if I can buy just blue ones? Will add that to my “to do someday list”. I wash and comb through his long tangled hair. He screams. No more tangles my ass. I know the pain he’s experiencing, he has my curls. Poor kiddo. Even if I wanted to cut his hair there is no way he could tolerate that experience. Besides, I like the curls. It gives people something to look at, to notice, other than Autism. It also makes him looks more like a baby, which helps me hang on to him as long as I can. After the bath the floor and myself are absolutely drenched. But we had a blast! I take him to his room and commence dressing, pajamas…we won’t be going out again today. We sing the getting dressed song just like in the morning and head back downstairs to watch “Elmo in Grouchland”. I don’t feel up to taking a walk, even though getting out of the house would do us both some good. I’m kind of hoping to hear back from Medicaid.
• 3:55 P.M. Peter is having an extreme meltdown. It has something to
do with trying to fit little Bert and Ernie (ErnieBo) into his little people bus. The door has come off the bus. Peter is flailing on the floor screaming “Bye-Bye door”, “ErnieBo”, I try to calm him. He rips out a clump of hair and bites my neck. I take a deep breath, dry the instinctive tears from my eyes and continue to try to bring him “back”. When this happens he’s not here. I need for him to make eye contact with me. I need him to breathe. We have to gain some perspective here. Then we can problem solve. The phone rings and I get up to answer it. It’s not Medicaid, it’s my inlaws. “Do I need anything from the store? Yes, cigarettes and Valium. Oh, the grocery store? Some more P I Z Z A meals for Peter. Okay, thanks bye.” The meltdown has subsided, I have replaced the door on the bus and it seems forgotten in lieu of drawing on the aquadoodle with markers. At least it’s not the wall I think…and then, not a moment later…it’s the wall. I mentally add to my “to do someday list” buy small can of paint and/or Mr. Clean’s magic erasers.
• 4:05 P.M. The stockmarket closed at an all time low. 1.2 Trillion dollars lost. Damn, that totally sucks. Not that I have any money in the stockmarket or at all. Peter has a college savings plan that my inlaws are diligent about contributing to. I’m sure that took a nice hit. I’m also not dumb enough to think that since I have no assets this doesn’t affect me. I’m not entirely sure how, because financially I can’t imagine it can get worse around here…but…I know it can. I try not to think about it. I give Peter the choice between “Elmo Mac” and “Pizza” for dinner. He chooses Elmo Mac, but only because he likes the box. I make the organic Elmo pasta and get him in his chair. He screams and spits it everywhere. “Bye-bye Elmo Mac, more Pizza, Bye-bye Mommy!!!”. Elmo Mac was a bust. I make a grilled cheese sandwich and cut up an apple. I present the sandwich as “pizza”. He eats it. I feel guilty.
• 4:45 P.M. He just came to me and looked me in the eye and said “Hi Mommy”. I said “Hi Peter” and he said “More tweet-tweet”. I deduce that this is a scene in “Follow that Bird” and I am right. Phew. Since he’s in such a great mood, I take advantage and change the Elmo Mac encrusted pajamas and pull out the toothbrush. He loves to brush his teeth. Then I think about the dentist appointment we have next month…no, I’m not going to reschedule…something will work out.
• 5:00 P.M. He’s so exhausted. He can’t even keep his eyes open. Daddy is doing Peter crunches and he is laughing. “More Daddy!” but Daddy’s abs can’t take it. I ask if he wants “Silly Cow” and he says “More Silly Cow”. I do the song we do at OT…and he giggles when I tickle him. We do this about 47 times, each one being “More time” (one more time). I can’t bear to say no. He’s connected. This is what I live for! I make him a Mimi and we watch Follow that Bird one last time. He brings the baby bottle to me and sits on my lap. I feed it to him like an infant. I haven’t done this in well over a year. It’s glorious. I feel so maternal. I feel so blessed. I am in love. I realize that I must write about this, I must try to preserve this moment forever. I decide that I’ll write about our day once he goes to bed.
• 6:20 P.M. I’m waiting for the oven to preheat so I can make a frozen pizza for Tavi and myself. Peter is lining up his Sesame Street dolls and talking to them. He is also standing on one of the packages I need to send out for the wish site. I say “Mommy says no!” and he grabs the box and bites it. I decide standing on it is better than chewing on it. The oven is preheated so I pop the pizza in with the hope that I’ll get him to bed just as the timer goes off.
• 6:27 P.M. He’s screaming a diatribe between Ernie and Bo (Bert). The same script as always that makes him so angry at Bo. I wonder where this came from? He woke up one day very angry at Bo. He would throw him and hit him with the Ernie doll and scream unintelligible dialogue at them. Every day since them (3 weeks or so) he’s been repeating this love hate relationship with them. I whisper “tuck, tuck, tuck – I love you” and give him Raffe (his best friend), a bink and Ernie and Bo. He must be totally drained because he didn’t fight me anymore.
• 6:45 P.M. I scarf down a slice of pizza as I head upstairs to the sound of thunderous flailing in the crib. Ernie had fallen on the floor. I “tuck, tuck, tuck” one more time and all is right in the world. I come downstairs take a few more Tylenol and sit down to document my day. Shortly I’ll go upstairs, soak in a bubble bath, read a few pages of US Weekly and go to bed. Tomorrow morning we have TEACCH (Autism preschool) and then Music and Movement class in the afternoon. Another day, so similar to today, yet so different will be here before we know it.