We Don’t Know It’s A Good Day Until It’s Over

The other day I was at the house of one of my favorite neighbors. We were discussing our children. Her kids are all in their 20s and her youngest is autistic.

Family hike. #goodday

Family hike. #goodday

She has read my book and blog and was talking about the similarities she sees in raising an autistic child and raising a gender nonconforming child. The stares. The judgments. The questions. The isolation. The impact on siblings. The self-doubt.  The stress. The worry.  The planning, predicting and protecting.

She, like me, feels like she always has to be predicting and planning for the moments that come after the one that is happening.  We’re constantly trying to think one or two or seven steps ahead to avoid unpleasant people and uncomfortable scenarios.

“I hate that sometimes you don’t know that you’re having a good day until the day is over,” she said. “You wish you had known when it was happening but you were too busy doing everything in your power to make it a good day — or at least not a bad day.”

She was absolutely right. I had never thought about it.

Saw this dog on the way to dinner.  #goodday

Saw this dog on the way to dinner. #goodday

At school, were worried about C.J. using the restroom privately and safely, were worried about him being bullied on the playground and we’re worried that his teacher will continue to do activities divided by gender.

At gymnastics we worry that someone will make fun of his painted toenails and long hair and make him want to quit a sport that he loves so much and has the potential to be really good at.

On a recent weekend getaway we worried when we saw another child staring at C.J., then snicker, then walk up to him, look him up and down and — with a disgusted look — ask if he is a boy or a girl.

Learning to knit.  #goodday

Learning to knit. #goodday

We spend so much time worrying, predicting, planning and protecting that often it’s not until I’m lying in bed at night — mapping out the next day — that I reflect and think to myself, “Today was a good day.  Today was a great day.  We rocked today.  I liked today.”

And that’s a shame.

I want to enjoy the day as we are living it.  I need to worry less.  That seems doable. I need to predict, plan and protect less.  I’m afraid those habits will be hard to break.  I’ve been doing them every moment of every day for the past four years.  It’s become a way of life.

“I can’t not be thinking of the ten scenarios that could happen ten steps ahead,” I said to my neighbor.

“I know. It’s what moms do when we have a child with special needs.”

“It’s exhausting.” I said.  She agreed wholeheartedly.

Our view at breakfast.  #goodday

Our view at breakfast. #goodday

I imagined how simple life would be if we didn’t have to live like this, if we could realize as the day was happening that it was a good one.

I’ve been making a point to stop throughout the day and take inventory.  Is it a good day?  Yes.  They’ve all been good days recently.  What if a bad day happens?  We’ll deal with it then, so let’s not worry about it now.  That’s what I tell myself.  It’s nice to hear.  But it’s easier said than done.

 

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37 Responses to We Don’t Know It’s A Good Day Until It’s Over

  1. Reblogged this on Literature Life and Lattes and commented:
    My thoughts described so well!

  2. Cheryl says:

    Well being the Mom of two unique sons…I do my best and feel this way a lllooott. In your honor though, I am trying to change the world a little. Last night it was cold, very cold and raining, but I had agreed to go to McDonalds for my son at 8 pm and buy him dinner and take it to work…he works at a gas station alone, and cannot leave until 3 am. So here I am , car window rolled down, cold rain blowing in and I place my order into the speaker, including a happy meal, for me. The voice says, “girl or boy toy” and I say “WHAT?” and the voice says, “boy or girl toy?” I lean out into the rain and closer to the speaker and say, I dunno, what are the toy choices?” and again she says, “Boy or Girl” and I say, “No what are the toys?” She didn’t respond so I drove to the window. “Hi, I don’t know what the choices for the toys are, so I can’t answer boy or girl.” She looked at me like I was nuts and said, “Don’t you know if you are getting a happy meal for a boy or a girl?” and I said, “No, we just pick the toy we want, so what are the choices?” Funny I still didn’t know what they were, but I took the one my 21 year old disabled son smiled at. Then I told her,, You don’t ask boy or girl, you ask car or doll or whatever…get it? we have a long way to go…but…we have also come a long way. Keep talking and sharing. Be blessed.

    • Mark says:

      That was priceless, Cheryl. If everybody would just start calling people out like this for them being on autopilot it would JumpStart this . big time.

  3. Mominator says:

    Just wanted to share that my 9 year old son has joined a non-profit theatre group (South OC) where everyone is accepted for whoever they are. There are fabulous boys who like to sashe in dance skirts and sword-wielding girls. All that matters is your attitude. This weekend they are performing “Shrek the Musical” at Tesoro High School in Mission Viejo. These kids are anywhere from age 4-14 with all levels of ability and the show is truly inspiring. I bet CJ would fall in love with it! (as long as he doesn’t end up competing against my son for the part of Elsa in “Frozen” next year :)
    below is ticket information

    http://www.seatyourself.biz/laderaperformingarts

  4. Adon says:

    As A child I grew up having a somewhat distant relationship with my grandfather. Due to health problems he was confined to spending his days sitting in his easy chair, smoking cigarettes, listening to baseball on the radio and watching the world go past his window. One day someone in the family came to visit and said to him that it was a nice day. Grandpa said in his usual surly voice, “It’s not over yet!”.

    I never forgot hearing him say that. He was a very unhappy and tortured soul that that no one could seem to lift out of his misery.

    I know that you love you children so much. You would like to protect them from every verbal barb and any physical injury that might come their way and I hope you can. Try not to let that concern sanitize both you and them from the world around you. Some bumps will happen along the way and probable already have. Try to enjoy life as much as you can.

    As a person who spent a good portion of my young life alone and aloof from family and friends I know what it can do to be isolated due to being different. I lived in fear of ridicule and teasing. There were times I literally feared for my physical safety from bullies. As I follow your blog I can see that CJ is not in the same place that I was at his age, mainly due to your loving support and protection. With your help and his natural gregarious nature, he will be Ok. Continue to find joy in the journey….Love, Adon

  5. Skye Kilaen says:

    Thanks so much for your blog. My son is 6 and is definitely a boy (we have asked him) but he has long hair down past the middle of his back, and he likes sparkly things and Hello Kitty as much as Lego Ninjas. He is mistaken for a girl in public pretty much all of the time, and kids give him static for it once he self-identifies. It just escalated to physical bullying for the first time, luckily all the kids were throwing was foam blocks while yelling that he was an “it.”

    There is a local summer camp / holiday camp that we won’t send him to anymore because the staff isn’t able to manage other kids’ reactions to him, and I’m struggling to figure out where else he can go where I feel like he’s going to be in a supportive environment. I know life isn’t always sheltered but he’s 6 years old! The grownups should have his back. And what bathroom does he go in when we’re out in public? Adults have gotten freaked out or hostile thinking there’s a little girl in the men’s room.

    I know it’s just a small slice of what your family is working through but I’m learning a lot just from reading about your experience. Thank you again.

    • mdaniels4 says:

      Those last 2 posts are what drives me crazy as a result of small minded people.

      This may be a bit long, and if this is not the proper venue then please just let me know. But this is something that I’ve been thinking about for quite awhile, and as I’ve shared this I have gotten some very positive feedback. So here goes.

      We all know the widely accepted gender binary is wrong. In terms of human sexuality, it is deficient in many ways by being too restrictive by its simplistic view. The word man, used to be Man, and referred to a mammalian species that was smarter than all the others. Man was intended also to have the capability to master the other species by its very nature and because of that awesome responsibility was also expected to shepherd the others and take care of them wisely. Woman, the feminized version of Man, womb Man, had an equal peer relationship in this process to Man, no more nor less.

      In the ensuing times, Man and Woman were changed in the vernacular to man and woman, which described male and female, not really the species. We’ve lost that in general speak. So now man and woman refer to gender, and the associated behaviors that stereotypically apply. Although that has changed somewhat in time, today if you say man, an image of looks and behavior come to mind, and these are almost intractable. Same with woman, although as a result of the feminist movement there is greater latitude in being woman and all that that means. Not so much with man, or rather man. It’s not great however for women either, I’m just pointing out that due to culture, the expression of woman in gender terms relating to behaviors and employment etc is a bit more open in interpretation. That’s a good thing. But man has lagged far behind due to social structure and social expectations arising from alot of different sources which has no real bearing on this post.

      Having said that, we all here know human sexuality is sex, that which is betweeen our legs, gender, that what we think of ourselves in our brain, sexuality, whom we are attracted to, same, both or opposite as being dominant. I propose a 4th, at least called expression. It is the outward way we express all those three before in our outward projection to others. It is some projection of all one or an infinite combination of both stereotypical expectations such as looks, mannerisms, hobbies and interests, language, thought etc etc. Basically it is an outward expression of what we really know to be true inside us. We may wish to hide it, or be free in our expression, but it is the real us that we are trying to hide if that be the case, and the real us we are projecting for others to see.

      So my point is is that I’ve come up with an idea that may change the simplistic binary viewpoint towards a more scientificposition. I think it’s time to consider the way we look at humans differently. I got this idea from the Axis V diagnosis from the DSM, the Global Assessment function, GAF score if that.

      So if what’s between your legs is a penis or a vagina, you are an M or an F. If in your head, gender, you could be an M or an F irrespective of the first. Then to whom you’re attracted to may be a S for straight, B for Bi and G for gay. The final of the four would be a score. That score could range from 0-100. So the most manly man out there according to our stereotypes could be classified a MMS100 or close to it. Same for the girliest girl female. Anybody see how diminuative we treat women? Manly men vs girly girl, not Womanly woman but girl.

      So I posit that in self exam, I am most likely a MMS75. Objectively I see all the first three, and subjectively I have a lot of cross over sterotypical behaviors that are just me as an individual. I like to shop, I like fashion. My languaging is more conversational than typical male, I like motorcycles, I will defend to the death those that might hurt my family, long and more intimate conversation. You get the point. I can’t be a 99, as I have too many stereotypically feminine interests or behaviors. I’m ok with that. It’s how I am, how I grew up, my influences of nature and nurture and so on.

      For example RuPaul might be, and I don’t know him, just guessing on what I know of him, may be a MBG55. In his female persona he might be a MFS80. This would explain transgenderism in a more accurate fashion in my opinion. Perhaps RuPaul might be a MFS85 that just hasn’t transitioned biologically. Then if he did he’d be most likely a FFS85.

      As a result of the Kinsey and Masters and Johnson works, we know that the range of behaviors is much greater than the mere 2 that are driving the comments as reported above. So just like we have the MMPI for statistical validity of the personality, I propose a Sexual Multiphasic Inventory that couldbe designed to weed out falsehoods, bias, and get at the true nature of the human sexual self. One that was able to describe the individual as compared with merely sterotypical and certainly subjective ideas leading to vioplence and devisiveness. It would be like the Meyers Briggs. I’m an ENFP, versus the sociallly rewarded ISTJ of the business world. In short, as an ENFP I don’t fit. But I bring remarkable skills to the job as a result of standing out. I see the SMI doing the same in our culture.

      This would also expalin the changing values over time. A woman in the 20’s might be a FFS60 because of her wearing trousers and cussing like a stevedore, not to mention smoking like men. In reality she is a trendsetter and a rebel, and today she’dd be a FFS85-90.

      I haven’t worked out all the details but I think this is a real start toward moving past rather stupid assumptions, and we might find that in fact, the norm may really be, in males since I am one and use as an example, a MMS or G 70 or even less if the truth be known. The MMS95 may be so far outside the norm to be an anomoly of enormous proportion. Can you imagine the effect on society, on culture, advertising, economics etc if that were the case? I can.

      Please let me know what you think. I’m sorry if this is too long, or not the proper place for this thought. But I think it is because of all the open, and bright people who come here. We are all after the same thing, and this is what I hope to be able to contribute. Thank you so much for listening. Mark

    • MM says:

      Hi Skye, much depends on where you are. There is a kids camp that Lori (CJs mom) has talked about, it is a camp for gender non-conforming kids. There’s also a conference (for parents of gender creative kids) which includes kids activities. (Look up “gender spectrum” in California, I think San Leandro?). I think there may be 1 more gender creative kids camp that I’m forgetting????
      Okay. Then I would also suggest that you might look for UU churches in your area. They may or may not have family camping in the summer, and it may or may not be highly supportive. I don’t know of UU kids-only caming for young kids (teens have supervised conventions called “cons” which are much loved experiences.) in general, I think you’ll find UU churches (and camps) far more supportive than the average environment, but I know there’s going to also be variation. (I suggest talking to staff and other parents to get some feel for the group.). Apologies to anyone who finds my comment inappropriate. I’m not trying to push anything (especially religion), I’m pointing out a possible resource. (I’d be glad to comment further if you have questions.)
      There was also a topic here (a few months ago?) about a boy who wanted to join Girl Scouts. I looked up a lot of info about the options (try searching here for scouts). I think there’s an option for boys to go to some of their camps but only when older (teens???). I don’t remember the details now.
      Please give your son a hug for me, and thanks for working to keep him safe and supported.

  6. Bronwyn Burke says:

    I just happened upon your book the other day in a bookstore. Thank you so much for writing it. It has made me laugh and cry. We too have a wonderfully creative and loving 6 year old boy who loves anything pink, sparkly, and high heeled! He is such a gift in our family. Many days are a challenge. The stares, the snickers. From parents and children. But, I know that he is living each day with more integrity and honesty than most adults I have met. To more great days, and sharing the journey.

  7. David Morse says:

    Rick, age 5 “Born This Way” Blog
    Los Angeles, California (1959)

    This picture was taken on Easter Sunday, 1959. Ever the fashion plate even then,
    I remember how proud I was of my new outfit. The pants and the plaid shirt were baby blue, and I was really looking forward to showing it off.

    I was a typical suburban kid from the 1960’s – if typical includes not wanting to get your clothes messy, playing with your cousin’s Barbies, and naming your first dog Toto after the dog in “The Wizard of Oz”. I even had a doll house which caused my dad fits.

    I remember many whispered conversations between my uncles and my dad that he should take me outside and teach me sports.
    It was a futile effort on my dad’s part and he eventually gave up.

    I remember thinking even then that I was different from the other kids. As I got older, I hid it better.

    My first gay crush was on Robert Conrad in “The Wild, Wild West.” I’d sit as close to the TV as possible and watch each episode with rapt attention. My favorite part was when Conrad would lose his shirt in a fight and get tied up – which, thankfully, seemed to happen nearly every episode.

    My dad thought my TV interest was unwholesome, but since it was my clearly straight brother’s favorite show also, he let us both watch it.

    I never did come out to my dad, who died when I was in my 30’s. I did eventually come out to my mom when I turned 40, and she became a life-long and very vocal advocate for gay rights.

    This picture remains a favorite of mine and brings back mostly happy memories of my childhood. I haven’t really changed all that much. I still don’t like to get my clothes messy and I still like bright and flashy shirts.

    I still like Barbie dolls and have several Bob Mackie collectors editions of my own. I still don’t care much for sports. Oh, and I still like pictures of shirtless men.

    Finally, I still give my pets the names of gay icons. Lucy is my current dog, and every time I walk into my house I call out in a Cuban accent: “Lucy, I’m home!”

    • mdaniels4 says:

      And David, if she is naughty when you’re out do you also say, “Lucy, you gots some ‘splainin’ to do!” Lol! That was my favorite part. Then came the “Waaahhh”.

  8. EmmaJewel says:

    My 14-year-old son has Asperger’s Syndrome, and I am always worrying, “what kind of day will it be today?” And I hope and pray that I don’t get another phone call or email at work saying, “CJ stabbed another kid with a pencil” or “CJ said that he’s going to walk home after 2nd period.”
    The reputation he’s brought with him to high school is one of “just a kid” – he’s much smaller than most of the high school boys, which of course doesn’t make life easier for him. He’s constantly (and unconsciously) looking for ways to prove that he is “a man.”
    I am glad to hear from his teachers that he is closer to typical than atypical, but that in itself is frightening to me – because if a typical teenager lies to everyone (which is not like CJ at all), I don’t think I want him to be “close to typical” – but that’s another topic for another time.
    The daily worries are there… not just for my son, but for me, too. What will my supervisor say to me if I get another call about my child needing parental intervention?
    It’s nerve-wracking and frustrating and just plain unfair. I envy the parents that are able to walk along without worrying if their child will stab another one just because the lights were buzzing too much and this other kid wouldn’t stop staring and poking him.
    To just sit back and relax, without needing to worry about the next ten minutes… But then when something doesn’t happen, we realize that we’ve gone the past two hours without incident, but I haven’t noticed the amazing zoo animals we’ve passed by.
    I’m really going off on a tangent. Just a note to say I’ve been there, and hopefully I can remember to smell the roses when I pass by!

    • DC says:

      This whole thread is so interesting to me, but I wanted to reply specifically to this comment because I so get this. I also have a son with Asperger’s (school is SUCH a challenge and stress, and I get the whole pencil stabbing thing–been there!) who is also gender nonconforming. Thinking ten steps ahead–not just about my child but about the world he’s interacting with–it’s exhausting sometimes. And yet…there is so very, very much I love about my kind, sensitive, brilliant, beautiful boy who wants to be Carol Burnett on Broadway when he grows up. So hang in there–I KNOW how hard it is sometimes, but our kids are so worth it.

  9. Ed says:

    Don’t overdo the worry part, I bet CJ is doing better handling it then Mom. He’s probably a lot stronger inside then you think.

    It’s great to read about how your all doing and to watch CJ grow up, he will be an awesome young adult and a very self confident intelligent adult male. I feel he will go far in life.

  10. Stella says:

    I used to go around and ask people to “tell me something good.” They’d just stare at me, saying “i don’t know” most of the time. but i’d urge them on, i never let them go before they had thought of something. It didn’t have to be big, or something special, the important thing was to make them think. I got told about blue skies, enough money to buy a coffee, grandparents coming to visit, A+ on a test, I haven’t told many people yet, but I’m pregnant (by my teacher) and you have green eyes, I haven’t thought about it before.

    If happiness was in the big things, no one would be happy, there are to many wars, to much pollution and sadness in the world. No, it’s in the small things, easy to pass by, easy to forget. But you know, ask and you shall receive. Tell me something good

  11. travel girl says:

    the point where you say “we spend so much time worrying…” until “…It’s become a way of life.” resonates with me as a person with current life challenges. I need to remember that habits, bad habits, can be broken, and that it is possible to know if a day is good or bad before shutting down for the day.

    Thank you for this reminder.
    And, keep on being an amazing parent.

  12. Lisa says:

    This bathroom thing is driving me crazy. Every kids needs to feel free to use the restroom at school. Why can’t CJ use the restroom right before recess and right before lunch when few, if any, kids are in there? He’d be less likely to get bugged by anyone and he would avoid the busiest times. He might get the privacy he needs.

  13. Kimberly says:

    May I apologize for my profession. I don’t understand – how can you divide a class up by gender. My principal would have my head on a platter, and my kids would be confused. But, I can’t think of any reason to do it – except for “Coach’s Talk” but that is in 4th and 5th grade about biology (sex specific health concerns) My biggest gripe is that boys tend to be picked to help with things like picking up packages in the front office more than girls. I try to pick like sized kids, so they can work together carrying awkward things.

    I even do my field day talk with the whole class. Basically it goes like this. Remember to bring underwear. Girls you can wear your swimsuit under your clothes, or bring your suit to change into at lunch. If you wear your swimsuit under your clothes BRING underwear to change into after we are done. If you change don’t lose your underwear put it in your bag. Boys most boys were their trunks as shorts. So make sure you bring dry pants and underwear to change into they WILL NOT let you on the bus in wet suits. (We are usually hitting the mid to upper 90’s so our field day has lots of water races, and water slides.)

    • May says:

      I always wondered why health classes were divided. If everyone had been around for the explanation of menstruation and whatever the boys were told (see, I’m an adult and I still don’t know what they were told!) there might be far less giggling and teasing over it.

      • David Morse says:

        There was an earlier post where CJ’s big brother, Chase cried as mom told him about that time of the month. He is a fine sensitive young man.

  14. kglong says:

    This is the first post I’ve ever read of yours and it was amazing to me. As an elementary school, I don’t even consider the gender split being an issue or uncomfortable for anyone. I’ll definitely avoid it in the future, as I want my classroom to be a safe space!

  15. And we wouldn’t have it any other way.

  16. It’s so hard to let go and take a step back. I dyed my son’s hair purple back in October, except it ended up bright magenta (the same shade as the glitter on this page). I woke up at 3am thinking “OMG… he’s going off to high school with this hair” and couldn’t fall back asleep. Know what happened? Absolutely nothing. Still nothing happened when the dye faded within days and he ended up with pink hair for a month. It’s been redyed twice and the only even slightly negative comments have been from family. Meanwhile he’s had strangers come up to say how great his hair looks and how proud they are of him.

  17. mdaniels4 says:

    oh, and I forgot to add one thing, that riselikeair mentioned. I’m at the age where if someone ask’s me how am I I usually respond “good enough”. Not just fine, good whatever the normal response is, and I usually get a quick look. My response to that is that “it’s a good day. I was able to get up this morning, look out the window, and anyday I can do that is a good day” And I mean it sincerely. For lots of folks they won’t be able to do that today. Maybe mine will be tomorrow, or the day after that, but someday it will not be a very good day.. But every day I can do that is good enough in itself.

  18. riselikeair says:

    You’ve made a quantum leap. Congratulations. I know how hard it is sometimes, but you’re so right. You need to be able to stay present and realize it’s a good day not only at the end of it, but while you’re in it. Best wishes for many excellent days.

  19. mdaniels4 says:

    I think Nancy there’s alot of truth in what you say. If we could get to the point where we recognize that the bullies and the ignorant around us are the abnormal ones, and encourage them to get help rather than the people who are only doing their thing without harming anyone else we’d be a lot better off.

    It is tiring Lori, because it’s almost like being a point soldier leading through a minefield. Never knowing where you step is going to be the one that blows up all whom you’ve been entrusted to find a way through it. Imagine what it would be like if a SWAT team had to be on guard the entire day, every single day they went to work. Their whole shift was like this, day in, day out, rather than just the situational times when they have to be completely focused. I would imagine that the burnout rate would be high and quick,

    I guess somewhere you just have to get to the point where you just accept what comes, the snickers, the looks, the comments and know that it’s just them. Reminds me of the Goth kids when they first started. I rememeber the looks and all that they got. For them at least it was a group, so while unusual was not all that uncommon, so at least they felt I think that they had some support among each other, kind of like perhaps CJ’s play days with other kids who like the same things as he does. We all wish you well.

  20. Dr. Sayers says:

    Wonderful words of (parenting) wisdom. Thanks. Reading your post was an excellent way to start what I hope twill unfold as an excellent day.

  21. Isabelle says:

    Love this post. It captures so well how exhausting it can be parenting a gender creative kid in a strictly gendered culture. Wishing you lots and lots of good days.

  22. pinkagendist says:

    If you have a chance (and the time) read Andrew Solomon’s Far from the Tree. It examines various families with children who are different, including issues of gender and autism. This passage is from the book:
    “I wish I’d been accepted sooner and better. When I was younger, not being accepted made me enraged, but now, I am not inclined to dismantle my history. If you banish the dragons, you banish the heroes–and we become attached to the heroic strain in our personal history. We choose our own lives. It is not simply that we decide on the behaviours that construct our experience; when given our druthers, we elect to be ourselves. Most of us would like to be more successful or more beautiful or wealthier, and most people endure episodes of low self-esteem or even self-hatred. We despair a hundred times a day. But we retain the startling evolutionary imperative for the fact of ourselves, and with that splinter of grandiosity we redeem our flaws. These parents have, by and large, chosen to love their children, and many of them have chosen to value their own lives, even though they carry what much of the world considers an intolerable burden. Children with horizontal identities alter your self painfully; they also illuminate it. They are receptacles for rage and joy-even for salvation. When we love them, we achieve above all else the rapture of privileging what exists over what we have merely imagined.”

  23. Keri Kirby says:

    Hi Lori! I’ve been reading your blog for ages and received your book for Christmas (loved it, btw). Have you ever heard of the 100 Happy Days project? I think it’s something you would enjoy. You just pledge to take and post a picture of something that makes you happy 100 days in a row. The goal is to come out of the project with finding the good in every day. You should check it out! That’s all I could think of through this whole post. The link is http://100happydays.com Have a great day!

  24. Elizabeth~Katherine says:

    My son is Autistic as well. As with many children with Autism it is easy for something that was unexpected to set off R. We have developed the mantra that the bad experience doesn’t have to define our day. Maybe we had a rough 15 minutes, maybe it was a rough 5 hours, but we still found time to make it a good day. Best of luck in finding your ways to make every day a good day.

  25. Nancy Aspaturian says:

    It’s not your child that has special needs — it’s the world around him that is deficient in not just letting it be

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