Me: Not until after dinner.
Annie: whines But I want one now.
Me: I said no.
Annie: Hey, Mom. Pretend you say yes.
Oh, the workings of the three year-old mind! If only life were that simple.
Kate receives a variety of services and therapies that address her needs. Occupational therapy for fine motor issues and challenges related to sensory processing. Speech therapy to strengthen pragmatic language skills. Verbal behavior taught Kate how to "use her words". A social skills group to help her interact with her peers. Behavioral health rehabilitative services to teach play skills, flexibility, coping skills. RDI to help Kate become competent in dynamic systems.
So, my question is this- What is the purpose of saddling Kate with this ODD label? Should this label be stamped on her, it might very well change how people look at her. The acronym itself is stigmatizing. Who wants their child labeled "odd"? Also, I am afraid that kids labeled with ODD are perceived as "bad kids". Kate has some challenging behaviors at times, but she is not a "bad kid".
There is no reason to slap this label on Kate. It will not change her needs nor will it change the services she receives. More importantly, it will not change how we are raising her. It will not change how we love her.
On Friday we had what we thought was, at the time, a major breakthrough in our ongoing pooping saga. Kate finally gave up her addiction to diapers, stopped the withholding, and pooped on the potty. Gonzo and I celebrated that night with wine. We were giddy with the success, finally able to see the light at the end of that long, dark tunnel.
Not so fast. Saturday brought back the withholding, stained panties, and accidents. Sunday, more of the same. A frustrated Gonzo said to Kate, "I don't understand. You pooped on the potty on Friday. Why can't you poop on the potty today?"
Her answer was, "It's not Friday. Today is Sunday. I don't poop on the potty on Sunday."
My daughter, the good Catholic, following the third commandment- Remember to keep holy the Lord's day.
When I was 2, Annie was zero.
When I was 3, I get a Honda Odyssey.
When I was 4, I goed to Disney.
When I 5, I get a lost tooth.
When I 6, I ride the bus.
When I 7, I will whistle.
When I 8, I will do ju-nastics. (translation-gymnastics)
When I 9, I will get a really lot of lost tooth.
When I 10, I will go on stage.
When I 11, I will play soccer.
When I 12, I climb a tree.
When I 13, I will wear a bra.
When I 14, I take a shower.
When I 15, I will climb on things.
When I 16, I will poop on the potty.
When I 17, I go on bigger rides.
When I 18, I get a bathroom in my room.
When I get a mommy, I ride in the front.
When I 98, Annie beed 96.
When I 100, I beed really big.
Here are the rules:
1. Link back to the person who tagged you
2. Share 7 random facts about yourself
3. Tag 7 random people at the end of your post and include links to their blogs
4. Let each person know they've been tagged by leaving a comment on their blog
Here are 7 random facts about me:
1. Believe it or not but Delilah is not my real name nor is Gonzo my husband's. Delilah is a nickname that was bestowed upon me during college. Some guy I knew through a friend started calling me that because of my tongue-twister of an Italian last name. It stuck. Gonzo was derived from my husband's difficult to pronounce Polish surname, which I inherited when we married.
2. I was one of the founding members of my college soccer team. I scored the first goal ever in the team's NCAA history.
3. I was a special education teacher in my former life. I loved working with the kids. Their parents, not so much. I was quite intimidated by them and dreaded phone calls, conferences, IEP meetings. Funny how that job prepared me for life with Kate. Funny how being a special education parent will make me a better teacher when I return to the classroom some day. I now "get it".
4. I recently subscribed to this magazine in an effort to conquer my ongoing battle with clutter and disorganization.
5. I am a hobby enthusiast whose enthusiasm wanes rather quickly. My house is littered with remnants of hobbies gone by: scrapbooking supplies, stamps, yoga mat, rollerblades, tap shoes, photography equipment, musical instruments, crochet needles, yarn, cross country and downhill skis, cross stitching crap. You name it, I have tried it. I believe #4 and #5 are closely related.
6. At age 26 I went through what I refer to as a quarter-life crisis and pierced my belly button. It seemed like a good idea at the time, but after 3 kids, all that remains is a nasty scar. I was in the middle of Target one day when I overhead a young girl telling her friend she wanted a piercing. I shamelessly whipped up my shirt and made her look at my scar to give her something to think about.
7. The summer before my junior year of college, I was mirandized. Yep, as in "you have the right to remain silent," etc. Before you go and think I'm some kind of criminal, please let me explain. Two friends from high school, who are now ex-friends, came to visit me at school. After a night of partying they thought it would be funny to break into people's cars and steal their stuff. And bring it back to my apartment. Which is how I got involved. My ex-friends were arrested. The police called me in for questioning. I was read my rights and was told I could be charged with aiding and abetting stolen property. I told the truth, that I had no idea what my ex-friends had been doing that night, that I was asleep when this all happened. They let me go, and I never spoke to those ex-friends again.
I feel way out of my league with this whole tagging thing, so I am going to sit this one out!
Upon arriving at Grandmom's house, Kate announced that she was hungry. She made her way over to the table and eyed up the spread. Within earshot of the entire family Kate exclaimed in a startling accurate rendition of Peppermint Patty's voice, "What blockhead cooked all this?!"
The entire family, Grandmom the Blockhead included, roared, thus reinforcing the behavior. Therefore, "what blockhead cooked all this" has become a favorite phrase, uttered over and over and over.
Bigger babies have bigger appetites and need to spend more time eating and less time sleeping is more accurate.
Little Fella wakes at least once, sometimes twice, during the night. He's not just hungry, he's ravenous. Now I'm hearing from those same people: Let him cry it out. He's big enough. He doesn't need to eat. Sounds great, but I don't think crying it out makes hunger go away.
So, here I am, four months into this baby thing, not sleeping much and lugging around an 18 pound giant baby. At this rate, I'm going to lose my mind from the lack of sleep, become addicted to caffeine, and need some serious physical therapy to correct the damage in my muscles and tendons.
Now, I'm off to pour my third cup of coffee for the day.
I turned my wondering gaze toward Lori. "Um, Annie had an accident," she said, answering my silent question. My heart skipped a beat.
"Pee?" I asked hopefully.
"Um, no," she answered.
Oh. No. So, poor Lori, who just finished writing about her pooping saga, poor Lori, who has been going through a difficult time, had to clean up the mess. I am so sorry, my friend. If it's any consolation, Annie peed all over my kitchen floor as soon as we got home.
Kate climbed into the car after school and dutifully arranged herself in her car seat. I proceeded to pull away, assuming she was properly restrained. I glanced in the rear view mirror only to see her sprawled across her seat sideways. Unable to pull over, I demanded that she buckle herself in at once.
"What will happen?" she asked curiously.
Well, honey, if I were to slam into another vehicle, the simple laws of physics dictate that you would continue to move at the rate of speed at which I was traveling, at which point you would be ejected from our vehicle through the glass windshield, causing catastrophic, most likely fatal damage. Basically, you would be killed upon impact.
"You would get very hurt," I answered, without going into any detail.
My answer further piqued her interest. "Will my eyeballs fall out?" she asked breathlessly.
No problems since that conversation.
Do I remember? How could I forget?
The summer before Kate was to start preschool, we enrolled her in a social skills group for children on the spectrum with the hope of combating her habit of screaming and throwing herself on the floor. The group was run by Marci, a licensed psychologist and movement therapist. Every Wednesday evening that summer we would drive 45 minutes for Kate to "participate" in this group. I say "participate" because Kate would spend the entire session rolling around on the floor, alternating between screaming and crying. Eventually, though, Marci was able to woo Kate through music and dance. By the end of that summer, Kate was a willing and happy participant, following Marci's directions and interacting a little bit with the other children.
"Yes, I remember," I replied.
"I cry a lot," she added.
Sensing that Kate was interested in having this conversation, I probed a bit further, hoping she wouldn't shut down, which often happens when she feels pressured. "You did cry a lot. Why did you cry at Miss Marci's?"
"I wanted you, Mom."
Those words made me want to turn the clock back two years, pick up that screaming toddler, and hold her close to my heart. Those screams weren't about non-compliance or defiance. Those screams were simply a little girl telling everyone she just wanted her mommy.
To prepare Kate for a weekend getaway in the mountains, we essentially outlined the entire trip for her. School first, then lunch, then long car ride, then check-in at front desk at mountain hotel, then go to mountain hotel room, then unpack, then go swimming... and so on. You get the idea. We showed Kate pictures of the resort we were staying at and talked about the activities we would be doing. We brought some of her favorite toys from home, and of course, her potty seat.
It should be noted that Kate is quite particular when it comes to toilets. To date she has used only five different toilets. Our powder room toilet, the toilet in Grandma's powder room, the toilet in Grandmom's powder room, the toilet in Jane's powder room, and the toilet in the right-hand stall at school. She has never used a toilet in a public restroom, which presents obvious problems when leaving the 2-mile radius around our house. In Kate's world, toilets must meet certain standards- they must have lids, they must have "big water" (meaning a full bowl of water), the water must stay up, and the flush must not be loud. If those criteria are not met, anxiety abounds, and a full-blown tantrum and wet pants result.
It should also be noted that Kate has yet to have a bowel movement in the toilet. Even the mere suggestion of using the toilet for that function instead of a diaper further ratchets up the anxiety level, causing her to withhold her bowel movements for up to a week at a time. That, however, is a story in and of itself and worthy of its own special post.
Fortunately, the toilet in our mountain hotel room met all of the necessary criteria. However, Kate had a great deal of anxiety using it the first time. For over a half hour Kate danced and twirled and flapped around the bathroom, repeatedly asking if the toilet had a lid, if it had "big water", if the water would stay up, if the flush would be loud. Yes. Yes. Yes. No. Finally, the desire to go swimming beat out the toilet anxiety, and we had success. Kate's peeing repertoire has now been expanded to six toilets.
It was hit or miss the rest of the weekend. By Sunday afternoon, our hotel bathroom was littered with eight pairs of wet and/or soiled princess panties, two pairs of pants, one pair of tights, one pair of pajamas, one pair of socks, and one pair of shoes. Needless to say, I am glad to be home. Home is where Kate's favorite toilet is. And that means a happy, dry little girl.
One day a letter came home from Kate's school. It explained a wonderful program for preschoolers who are at risk for academic failure due to low income. The program is funded through the state, and children whose families meet the requirements are eligible to attend preschool for free. I read the letter, then tossed it, as it did not pertain to us.
The next day when I pulled up to Kate's school, the office manager flagged me down. "Did you get the letter I sent home yesterday?" she asked cheerfully. "Yes, I did," I answered somewhat quizzically, not fully understanding why she was asking me. "You can send Annie here. For free!" Free? Why would I be able to send her here for free? And then it dawns on me. She thinks we are a low-income family. She thinks we cannot afford to send Annie to preschool. She thinks that my child is destined for failure because we are poor.
Flustered, I stumbled over my answer, "Oh, no, we don't qualify for that program." I failed to mention that Annie is enrolled in a different preschool, one that is around the corner from our house. That we send her there because it's close to home, so she will make friends in the neighborhood. So we can carpool. Because the twenty minute drive each way to Kate's school really sucks, and I won't be able to do it next year once Kate starts kindergarten. That I wanted Annie to attend the same school for two years instead of having to move her next year. That if Kate didn't have an IEP she would have gone to the school close to home. That this is really none of her business. "Oh? You were one of the families we were thinking of. You know, that could use a little help." This time my answer was more firm, "No, we don't meet the criteria. We are doing just fine, but thank you for thinking of us." I drove away, leaving her red-faced and speechless.
I hope she learned a lesson that morning, that it is wrong to make assumptions about people. That driving a minivan does not mean that someone requires financial assisstance. That being surrounded by people who have too much, does not make a person poor. That there are families out there who need help, but we are not one of them.
"Yes," Kate responded promptly.
"Kate, are you my friend?" the little girl persisted.
"Yes," Kate repeated.
"Kate, are you my friend and nobody else's friend? My best friend?" the little girl asked.
Kate gave her a puzzled look, not understanding the exclusion that goes along with being a best friend. "I friends with everybody. All everybody are friends," Kate answered.
Satisfied with her answer, the little girl took Kate's hand and the two of them bounced toward the playground. Friends.
I watch from afar. She does not speak to the other girls as she takes her place at the very end of the row. She stands a little too close to the girl on her right. The music starts. She bumps into the girl. The girl does not seem to mind. Her eyes burn with intensity as she watches the teacher. Shuffle-hop-step. It takes her a moment to process the move and execute it, but she does it. The rest of the class has already moved on to the next foot, then on to the next step.
I watch from afar, and I fret. Her processing and motor planning issues are evident. It is difficult for her to coordinate her arms and legs. She is always behind.
Then I see it. That smile. Stretched from ear to ear. And I relax. Keep dancing, sweet girl.
With those words, my irritation vanished. During the hour or so I was out of the house, he got a glimpse of what my life is like on a daily basis. And now he understands.
So, dear husband, now you understand the mountain of laundry, the unmade bed, the empty refrigerator, the stack of unopened mail, messy rooms, my short fuse, uncooked dinners, why I fall asleep on the couch at 8:30, why sometimes I just need to sit next to you without saying a word and just enjoy the quiet. Thank you for taking this walk in my shoes. And thank you for understanding.
I laughed out loud at the sheer absurdity of her statement, but on the inside I cried, for when Kate gets an idea stuck inside her head very little can be done to change it. So, I'm trying to look at the bright side. Only eleven more years...
Annie was all smiles on her very first first day, excited to be a big girl like her Kate. I, on the other hand, was a nervous wreck. Would she miss me? Would she cry? Would I sob unabashedly right in front of her? Will she make friends? Will she pee her pants? Will she know to ask a teacher if she needs help?
However, when it came time to drop her off, I was remarkably calm. So much so that when a teacher swooped over to the car and plucked Annie out of her car seat, I simply smiled at her excited smile and wished her lots of fun. And as I drove away, I teared up a little bit, for that tiny sprite just took another step toward growing up.
That brief flash of sadness was quickly replaced by something else. Excitement. As much as I will miss having her here with me, I truly am excited for her. Excited for her to learn new things, meet new kids, discover who she is. In school she will not be the middle child, the girl who has a big sister with autism, the girl with the baby brother. She will simply be Annie.
As the celebration began to wind down, I made the necessary preparations for the long car ride home. Gave the standard 5 minute warning, nursed Little Fella, changed his diaper, put the girls on the potty, gathered blankies and loveys, put jackets on, re-packed the diaper bag that somebody had rifled through looking for snacks, said our goodbyes.
"Oh, no!" wailed Kate. "My shoes!" I glanced down at her bare feet. Damn that child and her missing shoes.
"Do you remember where you took them off?" I asked hopefully. She wandered toward the deck, where she had spent much of the afternoon. The shoes were not there. Instead, Kate became enthralled, yet again, with watching the traffic light a few blocks away. I knew that tearing her away from the glorious traffic light would be next to impossible, so I continued the quest on my own.
Every nook and cranny of the house was searched. The shoes were hiding in a remote corner under the bed in one of the three bedrooms. With a sigh of relief, I gathered them together and presented them to their rightful owner who exclaimed, "They found me!"
"They found you? Oh, they must be magic, " I replied with a tiny bit if sarcasm.
Kate's eyes grew wide. "Magic shoes, " she breathed and put them on. Bidding farewell to the traffic light, she turned and walked into the house, to the front door. Magic shoes, indeed.
"He's just practicing his voice," I answered.
"He doesn't have a voice. He can't talk yet!"
"You're right, he doesn't say any words yet, but he still has a voice."
Annie thought this over, carefully. "Where does you voice come from, Mama?"
The immediate thought that popped into my head was a logical explanation, your voice comes from your throat, from your vocal cords. Meeting her expectant gaze, the real answer became clear. "Your voice comes from your heart."
Oh. My. I could say nothing, paralyzed by confusion and sadness and anger. And so those words swirled around in my head last night. And all day today. Those words came to rest on my heart, leaving behind a heavy ache.
If I had the words, this is what I would have said to that new teacher: You will love having this little boy in your classroom. He needs structure. He needs understanding. Take the time to know him. Each interaction makes a deeper connection. He is a visual learner. Teach him through pictures. Have a picture schedule for him and review it with him each morning. Warn him in advance of transitions. Expand his play. Engage him by being silly. Provide him with lots of opportunities to interact with his peers. Show him how. Have a quiet spot in the room filled with lots of fidget toys and pillows and lotion and soft music in case he gets overwhelmed and needs to regroup. He is a really neat kid. Take the time to look at life through his eyes. It really is beautiful. Oh please, just give him a chance. Please, please, make this work. Take care of this gentle soul.
If I had the words, this is what I would have said to the principal: This little boy is a child, not a label. He likes to run and play and laugh just like any other child. He is different, not broken. It is your school and your ignorance that need to be fixed, not him. He is a child, not something to be discarded because he is deemed to be unworthy. You owe it to him and to yourself to make this work. He is a part of this community, just like you and me. His strengths and uniqueness cannot be expressed in the confines of a fifteen page document. Help him and he will show you the beauty of life.
Our children are here for a reason. They are here to teach others about tolerance, about acceptance, about unconditional love.
Ah, the bathroom, where most of my battles are fought these days. Kate has a picture schedule of her morning routine to increase her independence and to stave off any battles that might ensue. And on that schedule is a picture of a toilet to remind Kate to, that's right, use it. However, Kate enjoys just looking at the picture and prattling on about how big girls use the potty. All talk, no action. Each of my gentle reminders to sit on the potty was met with an increasingly louder, "No." Knowing that she has a bladder of steel and can hold it until the mid-morning trip to the bathroom at school, I decided to forgo any more arguing. Annie, on the other hand, will have an accident if she is not placed upon the toilet the minute her eyes open. Although she insisted, kicking and screaming, that she did not need to go, she did. Thankfully, a large puddle on the floor was averted.
Next came scarfing down breakfast, brushing teeth, and combing hair. For the most part, these activities were uneventful, except for a little screaming while brushing Kate's bedhead hair. We flew out the door and tucked ourselves neatly into the trusted minivan. Miraculously, we made it to school right on time. And so it goes, each weekday morning until June, a new school year, a new beginning.
So, what would Hell be like? I tend to think that it is different for everyone. Individualized. My personal Hell would be a small room, roughly the size of, say, a powder room. And in that small room I would be trapped with two small girls. The bigger girl would have a wicked case of encopresis and a dreadful fear of having a bowel movement in the toilet. The smaller girl would sit on the toilet only to get right off and urinate in a big puddle all over the floor. Add to this lovely scene that I would be required to read Once Upon a Potty eighty million times.
This is what it would be like for me, if you believe in this sort of thing, of course.
I am still getting to know Little Fella, this newest member of our family. I know that he likes to be held all day, and I know that he is amused by the antics of his older sisters. He likes to take naps on his dad's chest but not in his crib. He likes to snuggle against my neck as he falls asleep at night, and I like hearing the soft whisper of his breath. He recently learned how to smile, and every time I see that smile it makes my heart sing.
Their relationship got off to a bit of a rocky start, with Kate throwing herself to the ground and screaming, "PUT BACK!" the second we brought Annie home from the hospital. Not bad for a toddler who was quite echolalic and did not have a whole lot of spontaneous language in her repertoire. After a few days of the screaming, curiosity set in. During Annie's first year of life, she was subjected to the constant poking and prodding of her older and not so gentle sister. Kate enjoyed poking Annie's eyes, pulling apart her toes, sniffing her, and Kate's favorite, laying on top of her. Fortunately, Annie was a content baby and tolerated, and was even amused, with these intrusions. When Annie reached toddlerhood, though, she started fighting back. No longer did she enjoy being man-handled constantly. So, Annie began hitting, or pulling Kate's hair, or knocking over the line of toys that could not be moved out of place for any reason. Annie became very in-tune to Kate and knew how to push her buttons, and she did. And when Kate's buttons are pushed, look out.
Needless to say, the first two years of having two children were very trying. Their relationship began to improve when Kate was 4 and Annie was 2. Therapists came to our home and included Annie in Kate's therapy sessions. They worked on social interaction, sharing, play skills, language development. At first, Kate resisted and tantrummed. Annie was a willing participant, eager to play and learn with her sister. Slowly, Kate's resistance subsided. She began to play next to Annie, and eventually, with her.
Kate is on the autism spectrum but is not shy. She is the first to greet her classmates and wave to strangers on the street. Maintaining conversations and sustaining social interactions are still difficult for her, but improving. Kate is passionate, strong-willed, fun-loving. She is active and uses all of her senses to experience life to the fullest. Annie is not on the autism spectrum. She can be shy, slow to warm, but once she is comfortable, becomes quite the little chatterbox. Annie is sweet, kind, and inquisitive. She is helpful and will stand up for herself when necessary. Both girls love playing on the playground, dressing up as princesses, and both girls have a quick smile and infectious laugh. They have become who they are because of each other. Two sisters, best friends.
As the spring semester came to a close, it was with a bit of relief that I packed the contents of my life into my trusty 1989 Pontiac Grand Am and headed home. Home, to a blissfully sweet, boring, alcohol-free summer. The only plans I had were to work at my aunt's nursery school. Couldn't get into much trouble with a bunch of toddlers.
After a few weeks of summer break, a friend I had met earlier that year called. Lauren lived a few miles from where I grew up and was calling to see if I wanted to hang out with her and some of her friends from high school. I did and that's how I met him.
The minute I met Gonzo I knew he was going to be my future husband. I know that sounds cheesy, but we clicked immediately. He was easy to talk to and made me laugh. Suddenly, my boring summer was filled with him. Trips to the beach, baseball games, camping, spending time together with friends, just plain fun. An unexpected summer romance. My new best friend.
But alas, we were young and carefree, and while we had a blast that summer, we were unsure what the fall semester and distance would do to us. So we agreed that what we had was a happy medium. More than a summer fling, not official relationship material. School began, and we kept in touch the old-fashioned way before the advent of the internet and email. We wrote letters, sent cards, talked on the phone. We visited each other at our respective schools, saw each other over breaks. Our happy medium had indeed blossomed into a real relationship.
Fast forward 13 years. Gonzo and I have been married for 8 of those years, have 3 kids, own a house. We stood by each other through the death of grandparents, uncles, a friend, students, through the serious illness of a sibling. Friends married, divorced, had kids, moved away. Our family has grown to include 5 nieces and 2 nephews. We've laughed at the silly, endearing things our children do, and we've cried through frustrating moments and scary unknowns. We are bread and butter, milk and cookies, macaroni and cheese. A true partnership. Side by side we stand to face whatever comes our way.
The bigger Kate grew, the more her body moved. Arms flapped, head shook, body twisted. By age 2 1/2, she could be found spinning in endless circles or running aimlessly back and forth across the room. She threw herself forcefully onto the ground whenever someone came into our house, and she developed a fondness for dragging her head across the floor.
It was at this time that we became concerned that something more might be going on instead of Kate just being an active little girl. Language development plateaued and did not progress beyond simple labelling of objects. Letters, numbers, colors, and cars were an intense obsession. Kate could walk through a parking lot and rattle off the make and model of every car, but she could not answer a yes or no question. Tantrums occurred with small changes in her environment, such as a chair being moved out of place. Instead of playing with toys, she lined them up or repeatedly put them into and took them out of a basket. Kate was evaluated by the county early intervention team and qualified for special education services for delays in all areas. A developmental pediatrician diagnosed her with autism and sensory processing disorder shortly after her third birthday.
Kate's first occupational therapist, Jo, was a sensory-trained OT who had a deep understanding of the autism spectrum and sensory processing disorder. Jo helped me understand the reasons behind Kate's constant movement and showed me how to help her. One of the greatest insights Jo gave me was the reason behind Kate's need to slam her body into things. To Kate, Jo explained, it might feel as though her body is floating in space. That feeling of being untethered, Jo continued, is the reason she seeks out that deep pressure; she needs to feel connected to something; this is how she experiences her world; this is how she figures out where she begins and ends.
Two years later, the floating in space analogy stays with me. It allows me to see life through Kate's eyes. That two people might experience the same thing in a totally different way and there's nothing wrong with that. That when we look through another's eyes, we understand them better. That we are all floating in space through this life and need to be connected to one another to help us find our way.