Monday, June 15, 2015

So You Want to Know What it's Like?

As I get more time as a special needs parent under my belt, the lists I've seen on the internet about the top ten things special needs moms want you to know about themselves bother me more and more. Same goes for the lists of things you shouldn't say to them and the lists of things they'll never say to you. I don't like the passive aggressive tone they always take: we're so stoic and we'll never ask you for help but our lives are so much harder than yours. You don't get our pain. We struggle and slave and we have it so rough and these lists say we don't want your pity but if you read between the lines it sure sounds like we do. 

Here's my comprehensive list of all the things I really want you to know about what it's like to be a special needs parent:

1) We can't be reduced to a list you read online. 

Yep, that's it. 

What I can tell you about this one particular special needs parent is this: I am a parent. Just like everyone else with children. I am a parent of two children I love more than life itself and I do everything I can to make sure their needs are being met. Their lives aren't perfect and I can't do everything I would like to for them and with them, but that's okay. I think it's good for them to know that their parents aren't perfect and that life can be frustrating. We talk as honestly and openly as we can with a three-year-old and a five-year-old and for the most part we all genuinely enjoy being around each other. And yes, things are hard. Lots of things are hard that have nothing to do with special needs and that's because life is hard for everyone. 

Like those lists will tell you, it's true that sometimes I don't want to talk and that I sometimes feel angry or sad. It's true that I put myself last. I hate it when doctors and therapists refer to me as "Mom" instead of by my name. I do have a second full-time job as bookkeeper and secretary for my little one and even though she's in school now, her needs are so great that Johnny still stays at home to take care of her and our family. When some teenagers on our street called Teeny the r-word a couple months ago, we thought we might fall apart. Some of the decisions we have to make and places we have to go and checks we have to write and calls we have to make all have an impact on us. For me, all these things come last: my marriage, my extended family, my friendships and social life, how quickly I return emails and calls from friends and family, exercise, how much sleep I get and my overall health. When we first got Teeny's diagnosis I mentioned some things I wanted my friends to do for me here, and they did. But life goes on and new crises pop up and we all get busy and the wave of manicures, coffees and mama nights out run dry and then it's just regular life again.

There's some truth to the oxygen mask thing. The stress really gets to me. I do lots of things to take care of myself, like go on vacation even when there are so many reasons not to. I try to meditate. I can't say I do much yoga, although I would like to. I run most mornings when I travel and I bike to work about half the time when I'm home. I sing along (terribly) to loud music and dance around the house with my kids. When it works in my schedule, I call into a special needs parent support group but it often frustrates me more than it helps because our daughter's issue is pretty rare and our experiences so different. Johnny and I call out things to be grateful for pretty regularly and I do make an effort to stay in touch with my friends. But there's never enough time, and I get down on myself for never getting to do half the things it seems like everyone else I know has the time to do.

What's hardest for me about being a special needs parent -- more than all the doctor's appointments, therapy sessions, calls to insurance companies, forms to fill out, advocates to call, workshops to attend, everything else we do for Teeny put together and all the things we never get to do that it feels like everyone else is out there doing all the time -- is that I am also the parent of a neurotypical child. The imbalance between what Teeny needs and gets and what Bee needs and gets breaks my heart.

I am not showing off when I say that Bee is a super bright kid. I can't take any credit for all the amazing things she is; she's just who she is. She is brave and independent. She's creative, curious and inspired and she has a silly sense of humor. Her reading and writing get better every day and she loves to draw, paint and make things. Of course she loves Frozen like most kids but I adore how she belts out songs by David Bowie, the Beatles, Culture Club, the Ramones, Madonna, Cyndi Lauper and more. She almost never struggles with separation; she has been going on drop off play dates since she was two. After her fifth birthday, she decided she wanted her ears pierced and she convinced me she was ready so we took her. She recently had her first sleepover and didn't want to come home, even well into the next day. Not a week after "graduating" from nursery school she started a new summer camp and spent half a day with 27 other kindergartners and four teachers she'd never met before at her new school. She's vegan and compassionate and caring and very, very concerned about the world, animals, the environment, her family and friends and most of all, her little sister, whom she plans to marry when she grows up. She is the kind of kid you dream about. She's easy, she's fun and she's engaged. And she knows she gets the shaft compared to her sister, and that's what sucks the most. 

I lie awake at night and think about how she should be taking dance or soccer or art classes like some of her pals. She should be learning an instrument because she wants to and seems ready. She loves to cook and wants to make new things with me every day. At five-and-a-half and nearly 50 pounds she always wants "a pick-up hug" or to sit in my lap like she did when she was a baby. But she can't go to ballet downtown because it's too far, even though every single week I take a few hours off work to schlep with Teeny and her wheelchair two hours each way on the subway to get to one very important half-hour therapy session. She can't take an instrument because we can't afford the cost but we scrape together what we have to so that Teeny can get extra speech therapy outside of school. She can't cook many things with me because Teeny wants to as well and sometimes the kitchen just isn't a safe place for a handicapped child who gets underfoot. And because she can't walk independently and needs to be carried a lot, Teeny gets my lap 9 out of 10 times.

My best moments as a special needs parent are when I'm thinking about both of my children. So when I sometimes feel like I should be doing more for Teeny, I try to remember to think about what Bee needs. Lucky for her, as the big sister she gets to do everything first. She does take swim, she has taken ballet. She has some really good friends and tons of books and toys and the top bunk in her room and her own iPad. She's going to an awesome summer camp and in September she'll start kindergarten at a school that was practically tailor-made for her. But I know that what she needs most is time with Mama. She wants me to read with her, walk with her, play with her. She is perfectly happy to go food shopping with me or help me take out the trash. She tells me over and over that she just wants one on one time with me and she absolutely can't get enough. So we have some rituals. Most mornings she wakes me up an hour or so earlier than anyone else gets up and we have a dance party or we make a smoothie or we paint her nails. We play dress-up with my clothes and jewelry. And then there are special moments like when I tuck a secret note in her lunch or pick her up from school when she's expecting her daddy or buy her a trinket like a sheet of stickers. Yesterday she got to come to work with me for a quick visit. She marveled at how many of her drawings and paintings I had on display in my office and how many pictures of her were framed and hung on the walls. While I typed some emails, she sat at my conference table and ate her snack with my plate and fork and she drew me a picture with my printer paper and neon highlighters and she was on top of the world and didn't want to leave when it was time. That's not much, and it made her feel so good. When I got home from work later that day, both girls were playing together, giggling about how they wanted to surprise me with something they'd done. Seeing them both so happy together, hearing Bee calling "We're hiding from you! We want to surprise you!" and Teeny shouting "We BOTH did it!" made me feel like I was the best special needs parent in the world.

PS: Up next will be a compare and contrast of ten basic things that both kids needed and what it took to get it. 

Wednesday, June 3, 2015

Vacation All I Ever Wanted, Vacation Have To Get Away

It's a dark and stormy night and I'm nestled under a blanket on the couch in a tiny rented condo on the tip of Cape Cod. I can hear the rain patpatpat on the windowpanes and the wind is howling between the trees outside. As I type I realize I am living a childhood dream right at this very moment. I feel a little like Meg Murry from A Wrinke In Time, all grown up. My children are sleeping in the next room. My spouse is reading a book beside me. I have a cup of tea and a head full of ideas and as nature rages around me I am missing nothing but a big old dog at my feet to complete the visual. And I'm so happy.

This is our summer vacation and I'm in my happy place. I didn't always, but now I guard my family time as fiercely as I can. Four years in a row we've come here to get away and every single time I worry about whether it's the right choice.  We have a lot keeping us home. For weeks, even months beforehand, I debate with myself about whether I can take the time from work. I also stress because vacation sounds like luxury and for our single income family trying to stay afloat in the most expensive city in the country, luxury is something we just do without. Since becoming parents, vacation travel has been a debate of can-we-really-afford-to-go-away versus can-we-really-afford-not-to. So we scrimp and save and we keep it simple. We go off season so it's half the price. We rent for a week or use airbnb and we cook at home. We fill our pockets with shells and rocks and buy little more than snacks and trinkets. It isn't about all the things to do and see and buy and eat. It's about relaxing in a pretty place together, away from work and school and the computer and the phone and the school bus and the bills and the appointments and the meetings and the millions of things we cram into every single day of regular life. This year the usual debate came to an abrupt end when someone just instructed me to go when I wavered. It's absolutely necessary, she said; we need this precious time together. Away. Just you four.

The thing I worry about the most, more than the finances or being away from work, more than Bee missing school, more than finding care for the cats, more than anything else, is pulling Teeny from her services.

She's been getting services for three years now and each time she misses anything, I get nervous. DOE funded services in CPSE are a precious commodity and even one missed session feels like a terrible loss to me. The DOE worries about this too. They want to know that we take her education and related services seriously, probably because they foot the hefty bill. Teeny has a 12-month IEP which means that the DOE feels she is at risk of regression if she is without services for any length of time. In fact, we were told that if she had more than five consecutive unexcused absences, the school would have to report us and her spot could be given to someone else. Knowing this and knowing that she needs those services desperately, I fear that I am being selfish by pulling her out to bring her here, where for a week she has not worn her braces, used her walker, sat in her wheelchair, strung beads, worked with play-doh or done any of the many things she does painstakingly every single day.

What I forget is that children need time to connect the things they learn in the therapy gym and speech lab to real life. Two years ago in this town, she crawled up a flight of stairs for the first time by herself. She was five steps up when we noticed. Last year, she played tentatively in the sand with her sister, feeling the strange texture between her fingers and toes with curiosity instead of fear. And this year she has simply taken off. It's like the real world is one big OT, PT and speech session in which she has finally put together all the things she's been learning separately. 

This week she slung an arm casually around my neck as she nestled into my chest, semi-strapped into an Ergo she outgrew two years ago. She told me when her legs hurt and she needed me to adjust how I carried her, and when they felt fine. We chatted about all the things we saw as we walked along the beach. Together we bent down together so she could pick up dozens of rocks off the sand and toss them into the water. She dipped her fingers and toes in the cold water and puzzled over the way the salt left her feeling sticky and damp. On a hot day, the girls buried themselves up to the waist in the sand. 

She rode in her sister's lap in the stroller, the two of them snuggling and cuddling and giggling like only sisters can. They made up songs together that she not only remembered but sang to herself for days. She held her pee and poop "like big girl!" and used unfamiliar bathrooms all over town, staying almost completely dry all week. She had unstructured time in a wonderful playroom in the town library, had time to color with crayons, markers and pens of different sizes and widths on a big roll of easel paper we taped to the living room floor and she mostly listened as I read an entire 255-page book aloud, one chapter at a time. 

While Johnny and I snuggled on the couch reading, she played with letter-writing apps on her iPad that strengthen her fingers, coordination and pre-literacy skills. She has eaten probably hundreds of French fries and drank numerous fancy green smoothies. She allowed her sister to give her sixteen temporary Frozen-themed tattoos, making her look like one bad-ass three year old. She cruised along tables, chairs, benches and other pieces of furniture or structures using only one hand to steady herself, repeatedly refusing my light but concerned touch on her back or bottom to keep her steady. She actually walked, probably 20 or so barefoot paces down Commercial Street, pushing the stroller weighted down by her big sister. 

She has a long list of landmarks she looks for as we walk through the town's main drag. "Let's go see fishie!" she'd say, knowing we were a few blocks from the bench in the center of town with the big metal fish decoration on it. "We almost there to fishie!" That fish, whose engraved letters are perfectly sized for little fingers to trace one by one as she murmurs P-R-O-V-I-N-C-E-T-O-W-N, is a favorite of mine too. She also loves the froggy in the doorway of a local shop, taller than she is, with arms outstretched and waiting for her hug every time we pass it. The ice cream store. The rainbow pinwheels. The puppy on the window of the coffee shop. The beach and its dozen or more access points up and down the town. The enormous anchor near the pier: our number one destination every time we leave the house because I love how it appears smaller and smaller as the girls get bigger. 

And boy has she talked. Yesterday she looked out the window and casually uttered the longest sentence she's ever said. "I want to go for walk and get ice cream," she announced. "But," she added, pointing outside, "it's raining." I marveled at this and realized she's been talking this way all week. This past Sunday was Johnny's birthday and all day long she announced it to anyone who would listen. "Today my dada birthday!" she shouted again and again. She took my cheeks in her hands and made me look at her. "It Dada's birthday!" she said seriously. "Soon my birthday too!" she added. Not until September, I reminder her. "September," she repeated. "That's soon." We've been having actual conversations that go beyond singing happy birthday or needing to pee or wanting a cookie. We talk about all the things we have to do and the order in which we'll do them. Like today in the town library, she crawled into the bathroom with me at her heels and instead of letting me get her up on the seat, she sat on the stool and said "First, you pee. And then, I go pee. And then Daddy go pee. And then Bee." She counted us off on her fingers as she spoke. In a coffee shop, a stranger asked how old she was. She surprised me by answering "almost four," instead of three. These are complex, sequential thoughts that even two weeks ago she couldn't articulate. Her language is suddenly peppered with colloquialisms which make me chuckle. I asked her if she wanted pasta for dinner. "Ummmm," she deliberated, "I think, nope." And then a second later, she reconsidered. "I think, yep." Normally sounding like an Eastern European immigrant, she began to use pronouns, articles and other words to more fully form her sentences this week. "That's she toast," she tried, referring to her sister's breakfast. And she must have said "I want to sit your lap," six million times this week, instead of last week's "I want sit lap." 

We don't use sign language in our family because her speech therapists feel she can articulate well enough without it but I taught both her and her sister the sign for "I love you" so we can have a secret way of communicating the sentiment when we are somehow out of earshot or in need of some extra love. Her fingers, so weak and unable to function independently of their neighbors, have not been able to sign this back to me but this week I caught her trying when I wasn't looking, holding her left middle and ring fingers down with her right hand, while she whispered "I love you," over and over to herself. How cool is that?

Best of all, while there have been some tears this week, I have noticed that her ability to self-soothe is finally emerging and getting stronger. Multiple times, she was able to stop crying long enough able to express frustration, tiredness, pain or hunger so that we could help her solve her problems. She was able to calm herself sufficiently enough to listen to our questions and tell us when she wanted to play longer at something, stop playing something, stay somewhere, leave somewhere, eat more, eat less, walk, crawl, pee, poop, get ice or a band-aid for a boo-boo or just have a hug or a kiss from mama. 

Being around her has been like hearing a loud, week-long click. And for that reason more than any other, I am sad to leave this place. Tomorrow we go back to the world we left for one glorious week; back to the work I already miss, the preschool Bee is about to graduate from, the therapies Teeny needs so desperately. But we'll all go back a little different than when we left.

Sunday, May 31, 2015

Wednesday, May 6, 2015

10 things Johnny loves about me

Yesterday Johnny and I made a deal to each write a list of ten things we liked about the other. I followed directions and wrote a list. He paid no attention to the rules and wrote me the most amazingly positive, cheerleading, confidence-boosting love letter I have ever received. It's SO good to feel loved by my favorite person on earth. I needed it. And here it is:

The things I love about you. 

Your intelligence is extremely attractive and I'm always drawn to it. I always look forward to a good conversation with you. I've learned so much from you and I retain more and more everyday. 

Your drive. You get shit done. You have no idea how much I admire you for this. You wake up running. And because of your overzealous drive, you're pushy with me. Which is great otherwise I'd move through life in slow motion and do nothing.

You are an amazing mother. The girls have the perfect role model. I love how they adore you and cling to you. Well... I wish they'd cling a bit less for your sake. ;)  

The way you provide for and protect our family is fierce and infallible. You are our true source of strength and it amazes me to watch you work it.

Traveling with you and everything it entails. We work really well together this way.  The car rides, walks, conversations, coffee, spanning time together, everything. 

 You're an amazing writer. I love that you write about our family. The charismatic and elegant way you weave words together makes anything you write an easy read.   

 Your stunning beauty stops me dead in my tracks. When your eyes catch me, they lock mine in a timeless embrace. I could look at you forever. Your body shape and height fit so perfectly with mine. When we hug, it feels so perfect. When we.... ;)

Your smell. Your breath, your neck, your perfume mixed with you, your.... all of you is intoxicating.

I love your taste in music. Watching you dance with a huge smile to a favorite song or singing all the lyrics you have stocked in that wonderful mind of yours. It makes me smile every time.

That you're vegan and compassionate towards other humans no matter how annoying they are. I have a lot to learn here and I'm trying. I swear.

I fucking love you!!!!!

Thursday, April 23, 2015

Sticks and Stones

Last week, someone called Teeny the r-word. 

I wasn't there for it, but hearing about it from Johnny felt like a kick in the stomach. He was taking the girls to the Y for their swim class when it happened. On our street. On our block. Where we walk a hundred times a day. There was a group of teenagers leaving the playground that my family was walking past. It went something like this: 

"Look at that girl in the stroller. She looks fucking retarded."
"Dude, she probably is retarded, just look at her father."
"That thing behind the stroller? Oh shit, that's a man?"
"Look at that fuckin' faggot. Do you see what he's wearing?"  

Blissfully, neither child noticed anything because Johnny stayed calm and didn't acknowledge them. He just walked them past the group and to the Y. Then he called me. And a million things went through my head at once.

First, I tried to make Johnny feel better. I tried to make it seem not so bad, like it was no big deal and he should let go of his feelings. At the same time, I thought it was sort of ironic that not four hours earlier, I had posted this video on Facebook:

This video validates the power of words and why words like the r-word are never okay. (Also, I just loved Paul!) I scrolled back down my page and watched it again and I cried thinking about all the people in the world who are marginalized for some real or perceived reason and have to suffer the indignity of being disrespected or mistreated. I cried thinking about my own child who will someday have to find a way to tell mean kids and adults to go fuck themselves, that she is as capable as anyone else. I cried thinking of the times she has already said "I can't" when I encourage her to do something by herself that might be really hard. 

Then I got angry. I thought about all the times Johnny or I have been called names and we'd never spoken up for ourselves because we feared for our safety. Johnny's been called a fag a million times. Lots of times when we walk down the street together, men catcall to us "ladies." Cashiers and customer service reps call him "ma'am." I have been called a dyke. A poser, a loser. Freak. Walking past the gutter punks on the Lower East Side back in the 80s and 90s, they'd always catcall at me. "Oh my GOTH!" they'd howl. We have been teased for our clothes, our music, our hair, our shoes, his accent, my last name, my being Jewish, our economic statuses, even our veganism. At the awful summer camp I was forced to go to for ten years because my mother worked there (and therefore I went free), I got made fun of for my area code (really!) and for living in an apartment instead of a house. I was tormented when I was little just because there always has to be someone and I was an easy target. The kids made me cry and because I always cried, they tormented me more. After a while I stopped saying anything to the kids who picked on me and cried alone instead. But the pain didn't go away and by the time I was 12, I had stopped crying. I'd learned to take it out on myself. Eventually, I really believed I deserved their hate and that I deserved to be punished. The ACT UP activists were right. Silence really does = death. 

I cried because I don't want my daughters to learn that kind of self-harming behavior. I cried for my younger self, for not feeling like I'd had a support system to help me get though my adolescence and early adulthood. I experienced rage and depression and twice I attempted to take my own life because I felt so alone. I also cried because I felt compassion for those teenagers, growing up without being taught to love and respect others. I felt sad that they probably go home to families who use words like that all the time. They probably thought they were being funny or cool or maybe they just didn't think at all. I felt sorry for them because I was an unhappy teenager too and I remember very clearly what that felt like. I had hated the world. I had hated my life. I know there were things I did and said when I was with my friends that hurt people I didn't even know, maybe for no other reason than I was trying to impress some kid so they wouldn't make fun of me instead. I cried because as I remembered my own adolescent behavior, I felt shame for judging these kids -- and without ever having seen them! I made assumptions about them based on what they said and where they were and I hated them for doing something that 25 years ago I was probably doing too. 

So I told everyone I knew about what happened. I shared on Facebook. I texted friends. I told coworkers. I wanted to expose this dark thing to the light, to diminish its power in whatever way I could. Turns out everyone I know has a story. Most people I know are or feel marginalized in some way, and many in multiple ways. The world has become a much more tolerant place than it was even very recently but we have a lot of work to do before I am convinced that we are really there. This may have been the first time Teeny was called this awful name but it won't be the last. As her mom, I want to give her all the tools she will need to teach the haters a thing or two. But the truth is that I don't have them. I am still a crybaby. Words still really hurt.

I know she is loved. I know she is growing up in a family that embraces difference and diversity. I know she will have good days and bad days and that every day she will come home to parents and a sister who will listen and be there for her consistently and lovingly. But in the face of cruelty, we will have to trust her to find her own way. I wish I could package this up as a teachable moment, but it's too painful. Instead, it just has to suck. I hate that I look over my shoulder every time I pass the playground on our street, wondering if the teenagers hanging out by the baby swings are the ones that accosted my family.

We've had some really wonderful days since then. Teeny had and loved her first hippotherapy session. We went to the ballet at Lincoln Center and saw Cinderella. We played in the park in beautiful sunny weather. The girls got cookies and smoothies at Peacefood. We bought them new sneakers for spring and when they got haircuts they left with pink balloons. And yet it lingers. Its ugliness, pervasive. If I had a nickel for every time I heard as a kid that sticks and stones can break my bones but names will never hurt me, I'd be a millionaire. I didn't believe it then and I sure as hell don't believe it now. It's in the back of my mind. Etched onto the insides of my eyelids. I can hear the word in my ears when there is quiet. It makes me look at my daughter differently. It makes me whisper the question to myself: Well, is she

A mom I know of a kid in Teeny's class shared a story with me. She said that she overheard a little boy on the playground ask his dad "What's wrong with that girl?" The dad said, "There's nothing wrong with her. What's wrong with you?" I loved that and it stuck with me. I know there's nothing wrong with Teeny. She's perfectly right just the way she is. What could be wrong about someone who makes me -- and so many other people -- so happy? But what's wrong with me that I'm still struggling a week after this three-second incident? What am I so afraid of? I accept her and love her and get so much out of knowing her just the way she is. Why can't I accept that other people might not? I say I don't care what other people think. So why does it hurt so much? What's wrong with me?