There comes a point where you just can't baby proof anymore. Abigail could scoot a chair over to the counter to get something off it. Or convince Eleanor to do so (which she has). She could pull the baby fence away from the fireplace, open it, and scatter ashes and soot everywhere (which she has). The only way to rope off the entire house is to lock Abigail in her room. So we do. Some people argue with me, "What if there's a fire?" But the risk of a fire is tiny. The risk of her getting hurt one morning while we're sleeping is very high. I get home from my run and the girls are both playing nicely in their room. I can hear Abigail sitting right by the door saying, "Oh, thank you!" to Eleanor with quite excellent pronunciation. I use the opportunity to hop in the shower.
At 7:17am, I step into the hallway to free the girls when I hear Abigail close their bedroom door.
Oh great. As they get older, they get better at yanking the safety proof thing off the door. But it appears Abigail hasn't gone anywhere yet. I open the door and both girls are still inside.
"Abigail ripped!" Eleanor pipes up helpfully.
"Yeah? Abigail ripped the door handle off?"
"Yeah, Abigail ripped."
The girls flood into the hallway like uncorked liquid. Eleanor runs to grab her Easter basket, the candy has been removed and it's just some toys, she's trying to decide how she should react. Abigail makes her rounds. She checks in on Daddy, she greets the animals. "Hi, Roxy!" She says, petting her. Roxy lovingly looks her in the eyes, her ears submissive. This is why Abigail is Roxy's favorite "puppy." "Look, Cat's here!" She picks up cat. I ask her three times to put Belle down gently, and she actually does. Abigail follows me around the house as I open the curtains, "Wow, Mom, reindeer!" She says stroking my leggings. "Cool!"
"Thank you. What do you want to wear today?" I ask her, not really asking for an answer. I'm behind on laundry and she only has one pair of clean pants. ABC leggings - Lularoe. They are not easy to match.
"Ehorse shirt!" She decides after a moment of silence.
I laugh. "A seahorse shirt? You don't have a seahorse shirt."
"Yeah." She says. We head toward the bedroom. "Sofia shirt!"
The Sofia shirt is dirty (and definitely doesn't match the pants), but she really doesn't care what she wears, so I pick out a lightweight sparkly burgundy knit sweater, and we head to the bathroom, she follows me with little prompting.
I pick Abigail up and put her on the changing table. She doesn't like to climb up it. She is really too big for a changing table, but it's a lot easier for me. I change her diaper and put her shirt on on. If I get it ready, I can say, "Okay, put your arm in." Prep the others sleeve. "Okay, put your other arm in. Now your head." I hand her one sock which she tries to put on. I put the other sock on her other foot and get out the brush and hair ties. She still can't manage the one sock, so I try to take it from her.
"No!" I wait. After another minute, she still can't get her toes in, so she hands it to me. "Help."
I bunch up one leg of her leggings and tap her foot. She slides her foot in. We repeat on the other side.
"Stand up. Pull your pants up." She pulls up the front, I pull up the back. I sit her back down and hand her the hair brush.
"Forty and three. 43," she says and starts brushing her hair. 43 strokes, one stroke per side at a time. "One." Left side. Passes the brush to the other hand. "Two." Right side. While Abigail is brushing her hair, Eleanor is using the potty by herself. She can put her potty seat on the toilet and move the step stool over. She puts her own diaper in the diaper pail and picks out clean underwear. I have to show her which side is the front and she can put them on by herself. I hand her some socks and pants. I set her shirt on the counter. She still needs help with the shirt. Abigail holds the brush out. I have only a few seconds to respond or else she'll just drop it on the floor. "43. I did it," she says matter-of-factly. Her nose is running. She's had a runny nose since before Christmas. She's had maybe a few days over the last five months when she hasn't been sick. I grab a tissue and hold it up to her nose. "Blow." She does. I plug the other side. "Blow." She does. I put her down - she refuses to climb down from the changer, she physically can but she's scared to fall - and we head into the kitchen. "Do you want Cheerios or babka?" I made a special chocolate bread for Easter, but she didn't really like it. I expect her to say, "Cheerios," but she returns, "Cooka" (babka). I pull out the cereal and babka and show them to her. "Which one?"
She taps the cereal box. "Toasty."
Um, okay. I pour her a small bowl of Cheerios - about 1/2 cup - and half a slice of babka, cut in half.
I hand her a spoon and the plate. She doesn't want babka. She plops down on the kitchen floor with a moan. "Look, Abigail, I have your cereal right here." I show her the bowl. She can usually carry her own things to the table without spilling, but I have a lot going on today and don't want to add "sweep cereal" to my list, so I opt to avoid the risk. "Let's go sit down at the table." She tries to pass her babka off on Eleanor, but Eleanor wants her own plate and refuses. I put the bowl down on the table, grab Abigail's plate and spoon and put those down on the table too. She's still mad and sitting on the floor next to her chair. I leave her there and get Eleanor food, get Theodore out of bed, and get him some food. By now, Abigail is sitting in her chair, eating her Cheerios.
"Bromies!" She announces loudly as Theodore toddles into the room. After a few bites of food, she can't sit still. She stands up in her chair. "Milk!" She says loudly.
"How do we ask for things?" I ask as I open the fridge.
"I want milk, please!" I pour her a chocolate Pediasure. 240 calories and usually all the nutrients she gets in the morning. "Oh. Kang ku so much." (Thank you.) She takes a sip of her drink and then grabs my water bottle. She's standing on the chair again. "Mommy! Water!" She says holding my water bottle up over her head.
"Put it down, please!" I say. She doesn't.
"Abigail, put it down," I make eye contact, use my firm voice. She slams it down on the table.
"Ha. Ha." An exaggerated, caricature laugh.
She can't sit still, but at least she's trying to be helpful. She gets up and turns the light on. She throws away a random tissue she found. I double check the trash to be sure she only tossed the tissue. She's running around and handing things to Theodore. She does manage to finish off the Pediasure, though, that's unusual, but good.
I make her lunch: A banana and animal crackers for snack time; fruit snacks, goldfish crackers, and go-gurt for lunch. I move to make a half peanut butter sandwich, but the bread is stale. I grab the homemade butterflake herb loaf I made for dinner yesterday. It was delicious and she actually ate it yesterday (she's not a big bread eater). I put a slice of that in her lunch box and finish it off with a funsize package of M&Ms from her Easter basket. It's kind of a big lunch and I expect half of it will either come back home or be thrown away.
Abigail emerges from the bedroom holding Matt's hand. "Look, Daddy's here!" She announces and commands him to sit down at the table. She was helping him get ready in typical Abigail fashion - handing him his shoes and belt, trying to help him do up his belt and tie his shoes, providing moral support - "Good job, Daddy!" as he puts his keys and wallet in his pockets. Theodore and Eleanor are done with breakfast by now and I set them free. Abigail heads into the living room to read books nicely while the other two argue over whose turn it is to play with the six bouncy balls we own or the toy cupcakes that Theodore got for Easter.
"Look, Mama! Abigail ripped." Eleanor hands me a book, it's one that Abigail's been wanting for a few months. "Baby James," she calls it. A Sofia the First Little Golden book. Every other page is ripped out.
"Oh, is this what you meant this morning?" I ask. I'm frustrated. We just bought it on Friday. This is what I get for letting her keep a book in her bedroom overnight. I should have known better. She wanted it so bad, hugging it to her pajamaed chest at bedtime.
"Yeah. All the pages are in my bedroom," Eleanor tells me. "In my bed!" She's a bit outraged.
"Okay, I'll fix it later," I say to pacify her, but it's so destroyed I don't know if it's worth trying to tape.
As I'm putting away some clean dishes, Abigail joins the other two in Theodore's room. I promptly hear Abigail taking all the bins off Theodore's shelves and dumping the contents on the floor.
"ABIGAIL! STOP MAKING A MESS!" I shout. It's too late to bother interfering and I want to get the dishes put away. It won't take that long if I can just work. A few minutes later, I hear the sound of plastic hitting the wall.
"ABIGAIL!" I don't even try to keep the frustration out of my voice. "STOP THROWING." Shit is everywhere. I'm swearing in my head. I'm angry. I have a lot to do today and I did not want to add superfluous cleaning to the list. I walk with a "Mommy is serious" gait. "Out. Go read books. Out of Theodore's room." She obeys, stacking up the books she got for Easter into a neat pile. She comes to find me. "Outside," she requests and tromps to the backdoor. She wants to read in the screenroom. I glance at the clock. "The bus is coming in a few minutes, read them in the living room." She angrily stomps back to Theodore's room, books in hand. The alarm on my cell phone goes off. "Shoes, coat, backpack!" I call. Abigail doesn't stop, but I knew she wouldn't.
"No thank you school!" she says in a whiny voice as I force the light-up Frozen sneakers onto her feet. I stand her up and force her to walk - books still in hand - into the living room. "Not you!" she tells me as she tries to collapse on to the floor. I slide her arms into her coat sleeves and zip up her coat all while she shouts "No school!" and tries to keep reading her books. The bus is running really early today and pulls up as soon as I finish getting her ready.
"The bus is here!" I announce. Eleanor and Theodore come running. They love the bus. Normally Matt has left for work by now, but he's working from home this morning and coming with me to Abigail's IEP meeting at 11:10am. He and the bus driver are friends now, apparently. One other time Matt got her on the bus and they chatted about coffee. The next time I saw him, he was carrying a sample of beans for Matt to try. I don't know how he makes friends so easily. I see the bus driver twice a day and I don't know anything about him. Matt takes Abigail out so they can chat about caffination levels if today's coffee. Once they are outside, Abigail is fine leaving and runs to get on. In all the hustle, I forgot morning prayers, so I whisper a Guardian Angel prayer real quick before the bus pulls away.
Before we have to leave for the meeting, I toss Matt the report the school psychologist wrote. He reads through it and starts to tell me what he thinks. "No, wait." I open my computer. "I'm going to blog it." He starts talking. My normally verbose, eloquent husband is struggling to find the words. His sentences are unusually short and clipped.
"They're good because they reinforce for me that Abigail is delayed. She's just Abigail, she's always been that way. But a Kindergartner should be able to count to 100 [Me: she can!] With accuracy, in a minute, or whatever. Well she has Down Syndrome, duh. I forget that sometimes. So on one hand, the only hand, these are good because they remind me that this isn't normal. She's delayed. [Pause] It sucks, it really sucks. They just boil her down to some institutionalized number. She's not a person. There is one eight word sentence about her as a person. [Pause] Although her classroom reports from her teacher indicate that her teacher sees her as a person more than the sterile report writer.
"These are filled with unexplained jargon that's meaninglessly dense. Any competent writer would explain these words. She is in the 'moderately cognitively impaired classroom.' It's written for a bureaucrat, not for a parent. Which the lawyer in me knows, obviously, they can't explain everything. They need to condense and move quickly. But on the other hand, it's demeaning: 'Here's all these technical words that you couldn't possibly understand, and I'm not going to explain them.' Come on, I"m not stupid. This report treats me like an idiot, and it makes her look even more delayed because they're not bothering to contextualize her achievements."
The reports are hard to read, emotionally. Determining what percentile Abigail is in. At what level is my daughter failing at school? Let's calculate it so that we can determine if a child with Down syndrome is eligible for a special needs classroom. We have to sign off on these reports. I joke with Matt:
"Just sign here, Ma'am. No, no, with your name, Ma'am."
"Oh, I'm supposed to sign my name? Sorry," I pantomime erasing. "I wrote 'fuck you.' My bad."
"Abigail is able to verbally identify 5/52 high frequency words. Abigail loves to read and is able to hold the book the correct way and turn the pages correctly." Fuck. You. Abigail sucks at phonetics. She's in the first percentile for ability to sound out words. Even her accomplishments sound pathetic in the report. "Her current running record of a level A fiction text is 96% correct words." When she reaches 100%, that means the books are too easy. Great, right? Except most kindergartners have mastered that level in the first semester of school, not year. "Abigail is able to use 4-6 word sentences with 70% accuracy." 70% - Woot! Except that's below the first percentile for her age group.
If I had to explain the purpose of an IEP meeting, I'd say, "It stands for: individualized education plan - all Abigail's therapists, her teacher, the special education director, we all sit down and figure out our goals for Abigail for the next year and what services and resources she'll need to get there." Sounds amazing, right?
Usually I walk out of an IEP meeting trying not to cry. It doesn't matter what I think or want for her. The school, and our special education program is one of the best in the county and our county's program is really good compared to most in Michigan, only has so much money. The therapists only have so many hours per week they can give each child. It doesn't matter if I want Abigail getting speech therapy every day, if they can only give it to her once a week, she only gets it once a week. Plus the therapists have to read the report we already got in the mail out loud. So yet again I get to hear at what level Abigail is failing. When I get home, I usually just binge eat chocolate. I swear a lot in my head. I literally burn the IEP, washing the ashes down the drain.
Today's IEP was actually, thankfully, our best one yet. I didn't feel like crying. I didn't binge eat my Easter bunny this afternoon. It went really well. No one read the percentile bits outloud this time, and they paused a lot, explaining what they meant in the report and give examples. For the first time, it was a really productive meeting, and I might even be able to borrow some of the old curriculum pieces over the summer so that I can work with Abigail to keep her from losing the skills she's gained.
But even after our best-ever meeting, it's really, really tough to make sense of our IEP meetings our heads. "They're schizophrenic!" Matt says angrily as we walk back to the car. "She's smart, but she's below the first percentile? Make up your mind." I believe most of her therapists and definitely her teacher care about her and genuinely want whats best for her. And Abigail is really, really smart for a kid with Down syndrome. Her therapists regularly tell me that she is one of the highest function individuals with Ds they've ever seen. During the parent teacher conferences (which her speech therapists usually joins us for) they say things like, "brilliant, smart, academically-inclined, rock star." They laud her, "she's a genuine pleasure to work with!" and tell me adorable stories about her. Then they look back down at the report. "And during the observation period, Abigail was passive 10% of the time, in this time usually not following directions and occasionally laying on the ground during music class." She's a genius (her teacher and the social worker both called her a "genius" today) who doesn't understand which elephant is the last elephant or the which elephant is the middle elephant or which elephant is the first elephant in the row. "She just picks them all up and hands them to me. 'Here you go, Sweetie!'" The therapist laughs. A sweet, friendly, cognitively impaired genius?
In the end, we all agreed that it was best to keep Abigail in Kindergarten next year, but increase the amount of time she is in the general education classroom. So Abigail is allowed to stay in school until she is 26, and, as the special education director (whom I really respect) explained to me last year, if they cruise kids on through the elementary and middle school years, they often end up spending 6-8, or even 10, years in high school. If they pace them through the younger years, then they can go through high school at a more normal pace. We all decided that in the fall, Abigail will spend the first half of the day in a mainstream, general education Kindergarten classroom and the second half in her special education classroom. The IEP has the flexibility needed for her special education teacher to give her more or less time in the gen ed classroom as she sees fit. She can change it up on a weekly or even daily basis depending on how Abigail's feeling that week. Her teacher is really good and very passionate and I trust her instincts about which environment Abigail needs. Matt and I both fully expected Abigail to remain in Kindergarten this year, we're not struggling emotionally with it.
Abigail's speech therapist, her teacher, and her social worker all promise to send home some resources with her over the course of the next few weeks. I feel really good about her educational future. Not how I usually feel after an IEP.
3:56pm: Abigail's bus pulls up. "That's my sister!" Eleanor shouts as turns the corner. She and I are waiting outside for her. I have found that if I greet Abigail at the bus, she's more aloof and doesn't seem excited to be home. But if I wait on the porch and let her run up the sidewalk to me, she's more talkative and happy. Sometimes she reports exciting news to me, like "Katie sick" or "Mrs. L baby" (her teacher's new baby stopped by for a surprise visit during class). Today there is no news. Her sleeves are soaked though, sopping wet and rolled up. Her chewy necklace fell off and I can't find it anywhere. She needs something to chew almost constantly. With short hair and no chewy, her sleeves take the brunt. Her teacher must have rolled them up so she couldn't chew. I'm impressed they stayed up on the bus.
"How was school?!"
"Was it fun?!"
"Did you go to music class?"
"Did you play outside or in the gym?"
"Did you go to art class?"
"Golbie Bear. TV."
This happens everyday. She's so fried after school that she just wants to sit on the couch and watch tv. She will watch until bedtime, crying if I turn it off and carry her upstairs for dinner. On days when I deny her the television, she'll read books or play with A, an electronic story reader thing she loves, but her fuse is crazy short. She gets irritated with her siblings, yelling and throwing things. She often gets into things around the house in order to push my buttons. It's really draining. She's exhausted. Her tank is empty. I let her watch tv today. Theodore is miraculously still asleep and she will surely wake him up if she stays upstairs. He was a super grouch today and I need him to sleep.
I turn on Goldie and Bear on Netflix and head back upstairs to review her backpack. Abigail was selected as the student of the week in her classroom. We get to fill out one of those "All About Me" posters and send it in with something to "show and tell" next week. She's doing really well with addition and subtraction.
I read through the Parent/Teacher communication log. She refused to potty on the potty. She had no bowel movements. She went to music class with the gen ed Kindergartners. She also went to the library and had gym today. She ate all her lunch except for her fruit snacks and M&Ms. Those are coincidentally the only two things I sent in wrappers. I bet she just couldn't open them herself and I wonder which aide went with the kids to lunch today. (There are good aides and there are lazy aides.) I imagine her sitting in the cafeteria trying to open her candy. She can't and so she has to put it back in her lunch box and stare at it while she finishes the rest of her lunch. It makes me sad. Her teacher reports that Abigail "had a great day today!" This is all pretty normal. Abigail is usually a really good student. She is better behaved in school than at home. I think it is because the routines never vary at school - she does the same things at the same times every day. I can't maintain that level of dedication at home. She thrives with routines and schedules. I do what I can.
Eleanor comes upstairs periodically to check in with me. "Mama, what 'cha doing? Are you building a heart for me?" She asks when she sees me crocheting. She finishes her cup of water and puts it next to my empty cup. "It's gone like yours, Mama." She checks on cat, she peruses her leftover lunch plate to see if anything is still appetizing.
"Do you want ham and macaroni and cheese for dinner? Like yesterday?"
She shakes her head no.
"Do you have to go potty?"
"What's Abigail doing?"
"Watching tv. Papa Bear building swings, Mama!"
"Oh. That sounds fun."
"Yeah." She looks outside. "Mommy, the garbage truck is all gone!"
"It went home," she says as she goes back downstairs.
I can hear Abigail downstairs singing along with the show.
Shortly after Theodore wakes up, Abigail comes running upstairs. "Mommy, tv stuck!" Netflix has paused. Are you still watching Goldie and Bear?
"No we're all done tv. Time for dinner. Do you want to eat?"
"Noooo!" A wail rises up as she collapses to the ground. I run downstairs to turn the tv off and when I get back, she's feeling slightly better.
"Roni cheese?" She asks as she sees my half-prepared plate for Theodore.
I finish heating up Theodore's food - leftover ham, macaroni and cheese, and bread from Easter. As I cut up the ham, she starts making moaning noises and going limp against the cabinets. She thinks it's for her and she doesn't like ham.
"Here," I hand her the plate. "Can you give this to Bro Bro?" She instantly perks up.
"Oh! Here you go, Bro Bro! Roni cheese!" She dutifully gives it to him while I prep her plate. We count down the seconds on the microwave. She carries it carefully over to the table and sets it down. Then she collapse on the floor.
"What's the matter? Can you tell me what happened?"
She won't look up.
I realize the chair is pushed in and discern she probably tried and failed to pull it out. Normally she can do it just fine. Strange. "Do you want to sit here?" I ask, pulling it out. She's annoyed, but climbs up. I make eye contact and speak in a really serious voice. "Do you want juice? Or milk?" She thinks my mock seriousness over a fun decision is funny. She laughs. "Juice."
"Please!" I hand a cup to her now smiling face.
"Oh, Kank you!"
I already ate dinner, but I sit with her at the table.
"Oh no fishy eye!" She shows me a fish toy who has lost one eye sticker.
I show her my new yarn that just arrived.
"No, it's for Mommy."
"Mommy," she laughs. Apparently that's a funny concept.
When Matt pulls up in the garage, Abigail runs to the back door and waits patiently.
"Hi, Abigail!" Matt says surprised.
"Hand, Daddy." She holds his hand and walks him into the house. "Mommy, look! Daddy!"
She hugs him and kisses his leg. "No, Abigail we kiss cheeks!" She laughs and "pats" him hard in the stomach.
"Ugh," he says.
"Ha. Ha," her exaggerated, caricature laugh again.
She is done eating dinner. A few tablespoons of "roni cheese," but most of one slice of bread. She takes a stack of books into the screen room to read nicely by herself. When she's done, she comes inside and sees Eleanor playing with her Sofia figurines at the table.
Abigail climbs up and the two discuss the figurines.
Abigail: "They match 'Ildabards!" (Hildagards)
Eleanor: "Look, Abigail! Two Crackles."
Abigail: "Oh, two Crackles? Wow! Cool!"
After a few minutes, Eleanor accidentally drops one on the ground. She melts down, but Abigail climbs down. "I'll get it!" A complete sentence, well pronounced.
She puts it on the table as Eleanor pretends to drop a bunch more on the ground. She's mad at the world that the first one fell and this is her way of retaliating. Abigail picks them all up and gives them all back to Eleanor.
"Eleanor, say 'thank you,'" I prompt. She refuses and it's a bit of a fight. "Tell her 'thank you' or you will be in time out."
"Thank you!" Abigail pipes up.
When Eleanor gets bored and leaves, Abigail plays with them by herself, looking at them one-by-one and laying them down on the bench. She makes commentary to me.
"Mommy! They match Rubies!"
"Which Ruby is bigger?" She points. "Which one is smaller?" She points again. "Good job!"
"Mommy! Clio!" She says it in the same tone of voice, but I know she means it as a question.
"We don't have Clio."
After a few minutes, she taps me on the arm and waits for me to look at her.
"Yeah, you're poopy?"
Matt volunteers to change her diaper, put her in pajamas, and help her brush her teeth. She can brush her teeth by herself as long as we put the toothpaste on the brush. She comes back and taps me on the arm again.
"Mommy, scrub scrubs." I suspect she's asking for a bath, but she's not getting one tonight.
"Yeah? Did you get a bath yesterday?"
"Yeah...Mommy?" She waits for acknowledgement.
"No Les. You can play with A."
|This is A.|
"I think it's in the bedroom by Eleanor's bed." She walks in to the bedroom and returns. "Look! A!" She taps me on the arm. She must be feeling really good, she's being very interactive.
"Good idea." She just stares at me. "Do you want Mommy to sit on the couch?"
"Yeah." I grab my laptop and we walk over. She points out which cushion I should sit on. "Mommy, right there." I move a blanket so she can sit next to me. "Oh, kank you so much! Mommy, 'is is Daddy's" she hands me a book he's currently reading. I start typing, live blogging Abigail's words. Periodically she tries to hit the power button, but I know her ways and bat away her hand with the lightening reflexes she's forced me to learn.
"Daddy!" She reads on my screen. "Eleanor! Oh, H. Good job, Mommy, H!" Eventually she tires of watching me type these words. She picks up A and hits the challenge button. "What letter does 'eggs' start with?" it asks. Abigail hits the letter E. "Good job!" it congratulates.
"Mommy, A broken."
"It's not broken, Hunny, it's fine."
"A broken." She drops it on the floor.
I close my computer and pick up the toy and starting typing in words and we do the hand motions we made up to the songs it plays. She leans in close, all snuggly and adorable. I'm typing "zips" when the "Z" key starts stuttering. "Oh, is this why you said A is broken?" I ask. It needs new batteries, but there is only one volume level and it gets really loud with fresh batteries. I decide to stall for a few days. We go through all the songs, then repeat her favorite ones. It's 7:50pm. A little past bedtime. I pick her up. At first she protests by arching her back, but almost instantly snuggles in closer, playing with my hair like she does when she's tired. I close her curtains, let her pick the color on her nightlight, and lay her down. We say our nighttime prayers, she chimes in at the end.
"Most Sacred Heart of Jesus..."
"Most Sacred Heart of Jesus..."
"Most Sacred Heart of Jesus..."
She reaches her arms up for a hug.
"Five. One, two, three, four, five." She squeezes me tight on five.
"I love you," I tell her as I close the door gently.