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. 


  1. This is so true and so well written. Thanks for sharing. Though, I cannot speak from experience, I can wholeheartedly relate to Bee. I am "the other child" but never ever felt that way and neither will she (maybe a little bit when something doesn't go her way, but not overall or as she gets older). She is a warm-hearted soul and will benefit from having such a loving family. Don't worry about all the things she's missing out on. My parents had to make those sacrifices, too. She will understand. She has a big heart. From my experience, I think Bee will continue to grow into an independent young lady. She will know how to get things done. She will be self-sufficient. That is often lacking in today's youth. You're doing great. Your family is absolutely lovely. I miss you and know that I think of you often. xo

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