Thursday, July 2, 2015

Neurological vs neurotypical: a compare and contrast

After I wrote my last post, I kept thinking about how much harder it is for Teeny to do things that for Bee were easy. I thought about how much harder Teeny has to work and I thought about how much longer the road from point A to point B feels when it comes to her than it does for her sister. Here are 8 examples of what I mean.

1. Infancy

Bee: She was a needy baby and only an easy one because I wore her everywhere and never put her down. She was clingy to me and I to her. She nursed day and night and was a chunky baby with a healthy appetite. Although the new mama in me worried constantly, she did everything she was supposed to do either early or right on schedule. She was easily entertained and I could soothe any fussy behavior with nursing, singing, or swaying. So I sang to her, walked with her, read to her constantly. I tried classes and workshops of all kinds, I got on neighborhood parenting listservs and I read every baby book I could get my hands on. I met a friend of mine with a baby Bee's age for weekly swims, walks and talks. I loved every second.

Teeny: A beautiful and delightful baby in her own way as well, she was very sleepy right from birth. She was slow to meet milestones; some she missed altogether. People told me not to question it, to relax and just get some rest; after all, if she was sleeping well I should be grateful! But I knew it wasn't right. I had to wake her up to nurse and as a result she lost a lot of weight in her first ten days of life. Within a few weeks, she developed sore spots in her armpits and in the creases between her legs from being so low tone and the doctor told me to use diaper cream on them. I joked about second baby syndrome with my friends and in some ways she had it -- I bathed her less, fussed less about the laundry and the messy house. I encouraged her to use a pacifier. I bought regular diapers and wipes instead of insisting on cloth. Inside I felt guilty because part of me knew she needed more than she was getting, but she seemed so happy that I had a hard time understanding what was going on. After months of hearing "Don't worry! Every baby develops at her own pace!" I swallowed my pride as a mother and began to plead with everyone I knew for help. And finally, someone whispered the words "early intervention," which meant nothing to me at the time, but I knew someone who knew someone who remembered a friend who worked with someone who went through the process and gave me a name to call. It took three weeks from that awful whisper to the moment I made the call and it took 45 days of testing and evaluations from that moment to recommendation for services and two months after that we were leaving the neurologist's office shell-shocked and gripping the piece of paper that said, essentially, Your Lives Change Today.

2. Preschool

Bee: We realized she was going to be ready for preschool before we were planning to send her. We found a gentle, loving  school that had a very part-time program that we felt was the right fit for her so we applied, got in and wrote a check to secure the spot. She went to this play-based preschool for three years and we loved it. There was a flexible phase-in for everything and the curriculum was emergent. Their "day" in the twos class was two and a half hours three days a week and over the next two years, she worked up to a four hour day every day. Every day either Johnny or I dropped her off (in the car) and every day either Johnny or I picked her up (in the car). There were four teachers for a class of 22. Her class went to the play yard once a day and on Wednesdays she had music. The rest of the time she did art, dramatic play, circle, exploration and other things and absolutely everything she did was celebrated. Yet there was never even a question about whether this school would be right for Teeny. 

Teeny: Depending on her birthday, the DOHMH may age a child out of Early Intervention before her third birthday, and that is what happened with Teeny. Because she was born in the fall, the DOH ended her services and transferred her to the DOE's CPSE, who determined that she was ready to commute on a school bus to and from a full day of preschool while she was still two, And because the DOE also determines whether a particular school is an appropriate setting for a particular child, we didn't get to choose where she went. Her bus picks her up anywhere between 8:10 and 8:15. We have three minutes to get her down there or the bus leaves without her and her commute is an hour or more each way. We aren't allowed on the bus to say goodbye and for safety reasons she isn't allowed to eat anything on the bus either. She's in school from the time she arrives -- around 9 or 9:15 -- until 2:15. During that time she is pulled out a dozen times per week for PT, OT, speech and for visits to another class. She has a special ed teacher, two assistant teachers, a full-time 1:1 paraprofessional for mobility and a social worker in addition to her therapists. Her schedule is so full that I don't even know when she has music and art although I know she has both once a week. She gets home between 3:30 and 4:00 every day unless we pick her up to take her directly to an after-school therapy and she is absolutely exhausted when she gets home. 

3. After-school activities

Bee: Unless she has a playdate, one of her parents picks her up every single day. She has never had a babysitter who wasn't a family member or a family friend. She has weekly swim and ballet lessons and lots of unstructured play time to read, pretend, ride her bike, dress up, color or paint. 

Teeny: Teeny has the busiest schedule of anyone I know, including adults. On most Mondays she has ballet, on most Tuesdays and Wednesdays she has swim and on Thursdays in spring and fall, she has hippotherapy way out in Brooklyn. This last one is so important that I actually take a half day off every single time she has a session so I can pick her up from school and take her in her wheelchair all the way out there and then get her home. For one single half-hour session, it takes us an hour and a half each way using accessible subway stations and then walking. On Fridays, her bus ride home takes significantly longer than on other days because of weekend traffic, so by the time she gets home she has maybe an hour or so of unstructured playtime with her sister before it's time for dinner and bath. On weekends we try to take her to family swim at the Y so she can exercise her legs. In June we got a month-long slot at a college's speech therapy clinic with a student so that meant getting her there twice a week on top of everything else. She also just got a mandate for two additional hours of physical therapy peer week outside of school and they took the place of the speech sessions that just ended. Playdates are a major undertaking although she loves them because her friends are scattered all over the city and many are not ready for drop-off. They're usually day long events that often turn into family affairs, which is great but means they are pretty few and far between. 

4. Doctor visits

Bee: She goes once a year for a checkup and whenever she gets sick, which is practically never. This year she got caught up with all her vaccines until she's eleven, so her checkups will be even less involved. In the fall, she gets a flu mist. Once we were in a car accident and although I examined every inch of her body and believed inside and out that she didn't have so much as a scratch on her, I took her (and Teeny) to the ER just because I knew I would never forgive myself if I'd missed something (which I hadn't). She has never been to the doctor for any other reason. 

Teeny: Teeny has a team consisting of a neurologist, physiatrist, developmental pediatrician and regular pediatrician. She also has an orthopedist, an orthotist and a geneticist and she has seen an ENT and an ophthalmologist. There's a handful of specialists around the country that I spend a fair amount of time chasing for information and we are setting up a series of evaluations with a cerebellar neurobiologist and his team. Over the years, I have called and interviewed a dozen or more therapists and specialists for every one that she sees. And then there's the paperwork. The evaluations. The progress reports. The forms. For every form or application, I need letters of support from all of her team and for every appointment, I need to explain her diagnoses and her needs and for every appointment I have to ask whether they take our insurance, if they are out of network, what the co-pay is, and whether they also take Medicaid, which is her secondary insurance. 

5. Birthday parties

Bee: We sometimes ask if siblings are allowed just because without a babysitter it's sometimes necessary for us to bring both kids if we're going to bring one. Then we put it on the calendar, make sure they have a vegan treat packed for when the other kids have pizza and cake and go. 

Teeny: We call the location to see if it's accessible and to determine if there are activities she can take part in, and whether she can keep her shoes on inside because she needs them to wear her braces. Only then do we ask about siblings, put it on the calendar, make sure we pack a vegan treat to eat and go.

6. Mornings

Bee: She wakes up usually before 6 and then gets into bed with me. She snuggles for maybe 30 seconds and then rolls on top of me, pulls my eyelids open, and bounces on me until getting up seems much more palatable than lying there with her harassing me for attention. One I'm up, I cherish the mornings with her one on one so I grin and bear the rough start, unless I absolutely cannot. Lately she seems to know this so she negotiates. "If you let me use my iPad, I'll let you sleep." Occasionally this is too good to pass up even though I know this means she is rotting her brain with episodes of The Littlest Pet Shop and My Little Pony and whatever other crap she can get her hands on.

Teeny: This kid is so tired from her busy days that she sleeps late. You know: mouth open, tousled hair. The kid is out. Usually I have to wake her so she doesn't miss her bus, and when she does finally wake up, it's slowly and sleepily. She calls to me and I snuggle her while she stretches, yawns, blinks and -- on good days -- murmurs "I didn't pee on myself! I'm dry!"  (On not so good days she says mournfully, "I peed in my bed. I'm sorry." Luckily we have way more good days than not so good days.) 

7. Clothes

Bee: It's very rare that Bee lets me pick anything out for her. She decides what she wears and despite my best efforts, her only criterion is, "do I look pretty?" Every day she asks this and every day I tell her she is beautiful no matter what she wears. She loves to deck herself out in princess dresses, makeup and the high heels that sit unused in my closet and doesn't understand why she can't dress that way for school. 

Teeny: Her clothes have to be more utilitarian. She has to be able to crawl in her clothing, so dresses that are longer than mid-thigh are out. We have to think ahead about where she will be and whether there is linoleum, carpeting or wood floors, so that what she wears protects her knees. A carpet can rip up her knees and highly buffed floors can be dangerously slippery if she has to take off her shoes and braces for any reason. She has to be dressed to do physical therapy or ride a horse. She can only wear one type of special socks that are seamless and very long and each pair costs a fortune. She has only two pairs of shoes: both wide-width sneakers that fit over her braces. She can't wear flip-flops, sandals or Crocs in the summer and she can't wear boots in the winter. She can't play dress up in heels like her sister so she crawls around with them on her hands instead and while she will sometimes put on a princess dress or butterfly wings, it's so frustrating not to be able to crawl or cruise comfortably that she can't tolerate either for long. 

8. Communication

Bee: She started to talk when she was less than a year old. Her first word was "cat." We never signed much with her even though it was very popular at the time because she picked up new words faster than we could learn the signs for them. The one sign she does know is the one for "I love you," which I taught to her so we could have our own silent, secret message to each other. We sign it to each other when we say goodbye at school or whenever I see her from across a room and can't call out to her. Sometimes I just sign it to her so she knows I'm thinking about her. When she was three her teachers told us she was delayed in pronouncing the hard "c" and hard "g" sounds correctly -- for example, she said "tar" instead of car and "doh" instead of "go" -- and I freaked out. A handful of speech sessions paid out of pocket got her nowhere so I fretted and worried until I pulled myself together had a reality check. This was not a problem. We pulled her from speech and decided we'd wait to see what happened with a little time. Sure enough, the issue resolved itself almost overnight. She's reading fairly well now and she likes to write letters, cards and stories. She is pretty expressive emotionally, too. 

Teeny: Her communication is slowed significantly by her motor issues. Her first word was "art" and until she got easier to understand, we kept a spreadsheet with a list of words she could say with a transliteration of how each word sounded the way she said it and we shared it with her teachers, therapists and family members so they could try to understand her more clearly. Signing was so difficult for her that she never managed more than a handful of signs even though she understood many. The one sign she tries to use is "I love you," like her sister but it always prompts a mini OT session. This is because her middle and ring fingers don't bend by themselves, so she can't make the sign correctly. "Show me 'I love you,'" she says every single time and every single time I have to hold those two fingers down for her while she holds the others out and pulls her hand to her chest. "I love you," she beams when she gets it right. The same goes for holding up fingers to show how old she is. Only in the past month has she learned to show someone she is three, which she does by holding her index finger down with her thumb in a modified "OK" symbol. She can now show you four and five as well, and she is so proud of it. She is able to express herself well now and get all of her needs met, although she needs a lot of help. Even with speech three times per week in school and more outside when we can afford it, she has a hard time with narration, conversation, pronunciation. She struggles when she's frustrated or when we don't understand her. I usually understand her just fine but realize many other people may not. If I have trouble, she sighs like a teenager. "No, Mama," she corrects, and says it again with a harrumph. Understandably, she becomes increasingly frustrated as I point to things and try to guess what the hell she means. Oddly, she actually pronounces the hard "c" as in car and hard "g" as in good just fine.

Then there's the one thing that's the same no matter how you slice it, which is

1. Love

Bee and Teeny: In some ways I love them differently and in some ways I love them the same. Sometimes I say that Teeny is the best thing that ever happened to me and that's because in the way that Bee is the child I knew I always wanted, Teeny is the child I never knew I so desperately needed. They are both happy, bright, giggly, moody, emotional, affectionate, silly, loving, playful, creative, tenacious, curious and kind. They are sisters and best friends and Bee is a wonderful teacher and guide to the world's most hardworking student. I can't imagine one of them without the other and I can't imagine my life without them both. Together they make us a family.


  1. Beautifully written!

  2. Wonderful insight into who they---and you--are! Love you all.

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  5. Your words made me cry because I could feel the love you have for each other. You are a beautiful family. Thanks for the inspiration.

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