“Do you ever feel like you’re raising a special needs child?,” a friend asked me recently.
“Yes, but I feel bad saying it,” I admitted.
“You shouldn’t,” she assured me. “My husband and I say all that the time that we don’t know how you do it, we don’t know what we would do if we had a son like C.J.”
The view from my run. C.J. in a dress, sweats and his brother's old shoes. Holding on to Frankie Stein and listening to Britney Spears. And, yes, he's too big for the jogging stroller.
My son is gender nonconforming and I consider him to be a specials needs child. He is a child and he has special needs. Very special. Like other special needs children, he needs an advocate, a protector, someone who will take a little extra time to explain things to him and someone to educate others on his behalf. That person is me. And, often times it’s exhausting. Some days I’m tired of living and breathing gender issues and it feels like there is no escape.
I travel before him, where and when I can, to alert people to his arrival and his uniqueness. I clear the way, often wondering if that’s what’s best. Am I encouraging people to have preconceived notions about him before they meet him? Am I doing him an injustice and disservice by not letting people get to know him and love him as him, gender nonconformity aside. Can his gender nonconformity ever be an aside?
Special needs kids are often defined by what they cannot do. My son cannot blend in. He cannot wear boring socks. He cannot resist having his nails painted. He cannot stop dancing when music comes on. He cannot resist the urge to strike a pose for the camera. He cannot play pedestrian games like cops and robbers or cowboys and Indians. He cannot shun a good skirt with lots of “twirl” to it. He cannot choose to play with a group of boys over a group of girls. He cannot keep his hands off of beautiful hair. He cannot say no to a great craft. He cannot turn the other cheek to things that sparkle, glow, shine or have a good use of color. He cannot conform to traditional gender roles. No way, no how.
I love him for all of his “cannots.” But not everybody thinks that they are as special as I do.
C.J. has a butterfly fetish lately. He got this one at the local farmer's market.
I was in the grocery store the other day and C.J. was wearing Tinkerbell boots, pink sunglasses and beaded accessories of his design. He had a pink plastic microphone and was singing Aqua’s “I’m a Barbie Girl” like he wrote it, sang it and copyrighted it. The produce section truly is his stage. Not everybody wants to be his audience. I get comments. I get looks. I give comments. I give looks. People insinuate and sometimes say flat-out that my son is gender nonconforming because I’ve made him that way. Damn me for encouraging him; him being a special needs child is my fault.
If my son had Down Syndrome or Autism or a peanut allergy, they wouldn’t blame me for his special needs. They wouldn’t find fault in me and say that I caused it.
I’m thankful that my child is healthy and happy. When your child has special needs all sorts of fears and worries seep in, grab hold and tease your reason. When your child has special needs, so do you.
Raising My Rainbow 
People are idiots and will find ways to blame parents for everything. My friend got yelled at in the grocery store because her kid with Down syndrome has alopicia (she’s bald) and someone bitched her out for “shaving her kids head”. WTF! So I write off anyone who insinuates that you made CJ this way as a silly goose. You made him confident and awesome, but he was born the way he is!
For me it was a HUGE challenge, and still is. Growing up somewhat gender nonconforming. I liked playing tag, playing in the mud, swinging on swings, all of that. I was repulsed by football, failed miserably at basketball, and never got the knack of soccer. I played with Barbies, pink ponies, LEGOS, Power Rangers, I designed, drew, picked out fabric, cut, and sewed much of my Barbie’s clothes. I was learning to use the sewing machine when most “boys” my age were singing Macho Man. And I STILL have issues! Yep, Im gay. And Ive struggled a lot with it. Some members of my family are very unsupportive, and add to that many members of the community and society at large that are downright hateful towards gays. I grew up in the 90s and 2000s, in a big city and in a small town, a HUGE city and a smaller town again, and Ive had some interesting experiences wherever I grew up. By and large, there aren’t enough advocates for gender nonconforming boys and girls. Especially for the boys. You are not alone, and Im glad Im not alone either. Keep up the good work, Im rooting for you! Network, find people who are supportive, as for the unsupportive ones, if they want to continue being prejudiced just move on. You probably already know this, and yes its easier said than done, but just keep at it! For now, its fashion, runway walk, and more fashion galore! Thank you so much. Your son is lucky to have a mom like you!
Some days Autism is just as misunderstood. I’ve been accused of coddling my son son (he’s 4 and was diagnosed at 2), of putting him in therapy and his being around “kids like that” causing his problems, or being told he’ll grow out of it. I had hoped in 2009, 10 or 11 mom wouldn’t be blamed for everything any more. Unfortunately, that is just not the case. I just found your blog – you are an amazing advocate for your son. He is blessed to have you as a parent. (Can I say I love that you love his quirks AND seem to find then annoying some times? It seems verboten in the autism world, but seriously, you can’t always LOVE the goofy behavior…even though you fiercely love your kid.) If you’re ever in Chicago, your 1 – 2.5 glasses of wine are on me! (And I’m glad to show C.J. where they have pumps up to size 15. Chicago is good that way 😉
ALL kids have “special needs”!
Your C.J. is healthy, fun-loving… and hilarious!
Don’t ever change him!
As an adult who is peanut anaphylactic, let me tell you there are jerks everywhere. I’ve seen people blame parents left and right, dismissing anaphylaxis as a disability – believe me, it is in ways you can’t even imagine – and insinuating that parents are just making things worse by “overprotecting” their children from things that will actually kill them. Like Joel Stein, who wrote in ’09 that parents are just trying to make their children feel special by “pretending” they have allergies and that they’re just psychosomatic episodes: http://articles.latimes.com/2009/jan/09/opinion/oe-stein9. He then was resigned to eating crow and apologizing for being an utter fucking asshole a few months later when his son was diagnosed with a life-threatening nut allergy: http://www.time.com/time/magazine/article/0,9171,2007417,00.html
I just found your blog today, and have really enjoyed reading it. You seem like a very kind, compassionate, thoughtful parent and I am sure that CJ knows that he has a great mom.
I too am a mother of a special needs child – even though his special needs aren’t the typical ones. I too have to travel through this world first, warning people, giving them any type of inside hints about dealing with him before he gets there. It is exhausting, painful, stressful, excruciating and sometimes unbearable. But like you, I am able to recognize his amazing gifts and all the things he does that are extraordinary. I have followed your blog since the beginning and I find such comfort in your stories with C.J. I can only aspire to keep up the strength and tough skin that you do. You guys are amazing and truly inspirational. Thanks from someone who gets it!!!!!!!!!!!
This touched me profoundly. Thank you for sharing your wisdom.
This is beautiful…very beautiful. However, if you child had autism I can assure you…you would get blamed. You would hear how he just needs his butt torn up. You would hear you don’t MAKE him understand, you give in to him. You would open face book to read the latest study that says, you made him that way by…take your pick this was this weeks list…Who you married, how much tv he watched as a baby…you didn’t have him with his peers enough..your body rejected him…and so on. Life as the buffer for any special needs kid is exhausting..and rewarding. You get to smart mouth the morons and you get to thank the nice understanding people. Hang in there…19 years and counting…with my own special needs son.
ps.. I passed this blog on to a friend of mine dealing with a student with gender issues. Sadly the Dad blessed her out for allowing his son to play with girls and girl toys. She called and asked me how to educate the Dad…I said, “Show him another family, but this one is open minded….” See..you never know what paths you pave..keep it up.
hi…let me tell you than dont be dissapointed by your effort with C.J. congratulations, sincerely to be a loving mother than encourage your child to follows her own desires, we are here once in this place and nobody have the right to rule our lives in personal LIKES and DISLIKES, the others child (the remaining childs) are the real influenced kids… NO C.J. because you have bring the liberty of choice to your son… think about this… THE SOCIETY REALLY INFLUENCE and in a brutaly way, TO THE REST OF CHILDS AND MAKE THEY HAVE A VIOLENT BEHAVIOR IN A BUNCH OF BOYS (NOT ALL fortunatelly) and IMPLANT THE OBSOLETE SEX ROLES THAN PRESERVES A BAD ADVANTAGE OVER THE FEMININE POPULATION….kids like C J and me too (i m no too young) TRY TO EMULATE OFTEN,and honnor THE FEMININE ATITUDE , the kindess, the empaty to other persons, the love, etcetera,because thats the women escence and the men have to be like yours, DONT THINK SO? 🙂 KISSES BYE i apologize by my poor english
Your doing a great job of taking care of the child who expresses differently and therefore may be subject to the misunderstanding that other kids who express differently are subject to, and as one poster mentioned, if society would shift a bit then the person who does express differently wouldn’t have that challenge.
Now having said that, I do find it interesting that your comments included CJ not being able to resist this or that, or having to do, or must do or be or touch etc. In the regular world those “must haves” generally indicate a disorder of some sort, as differentiated from the “boy I’d really like to” category. Such as my co-worker who simply cannot step on a diamond pattern in the floor. OCD kind of thing.
As I’ve read your blog, it occurred to me that most 4 year old girls are not obsessive about what they wear, or boys for that matter, and I’ve had 2 boys and 1 girl. Of course they’re pretty opinionated but generally will not demand bows in their hair or must have to wear certain styles or must do their nails. I hope I’m getting this across correctly. My point is that I wonder if you were right in the title about a special needs child but differently than what we’ve been discussing. I wonder almost if there is a form of obsessive compulsiveness surround his must to wear and dress in a gender non conforming way, irrespective of being or turning out to be sexually oriented one way or the other. Just food for thought.
As I’ve been friends with other gaymen and women, I’ve noticed that that OCD comes out in different ways than what I’ve seen in what’s called the straight crowd, who have their share of it too. But it’s different, and I’ve never seen a gay man who “must” wear certain stuff etc, to show who he is as a gay man, but that’s another topic altogether. Gay men share many of the same mental processes as straight women, so it would seem then that gay men would be more likely to wear a skirt and makeup and lipstick, but that doesn’t seem to be the case. in reality there is mostly heterosexual males who do that than the gay crowd, who in my observation generally tend to wish to take on the trappings of what they find the most attractive and that is more manly or at least a derivation of that.
So in some way, is it possible that children like CJ are actually HYPER-masculine which expresses an unconcious and uncontrollable urge to mimic what they find most attractive, and that is a woman. Whereas children who are called normal boys and girls have somee sort of filter or ability to innately contol that urge.
As a parent of a child with a developmental disability (and please don’t think I’m suggesting your son has a disability!) reading your story, it seems like if it’s helpful to consider yourself a “special needs parent” — then welcome to our club. The more the merrier, especially when we are joined with moms like you who are pioneering new territory.
One interesting thing to think about: in the disability world, we talk about disability being defined by adaptation and function (which includes being able to participate in society with ease); for many of us, we realize that our child’s disability is not so much a problem based on our kids’ etiology or disease or genes or congenital abnormalities, but a problem of society’s reaction to those differences and inability to accomodate them. If society changed, some disabilities might actually go away even if the person stayed exactly the same. And again, while I wouldn’t characterize your son as having a disability in any way, shape or form, one thing we could wish for is a world where he has no “special needs” because his environment is as accepting of him as he is of himself and you are of him as well. But until that day–keep up the fantastic work!
So of course CJ is a “special needs” kid, broadly defined. And I agree completely with all the comments that support you and everything that you’re doing for your sons — both of them! You’re a great Mom and a great writer!! I love that you let us all share in your joys and frustrations. You’ve built an incredibly community of supporters through his blog and you should feel free to reach out and rely on this online community of friends anytime you need us!
All parents of special needs kids can sympathize with your weariness at the constant energy that needs to be invested in the advocacy for your child. We also understand the desire to set aside our burden of love, just for a little while, to catch our breath and check our bearings.
Although CJ’s specialness does not fit into a special education category, from everything you say and do, you are still doing all the things those of with “children with labels” are doing.
Reaching out to teachers, parents and others before they meet CJ provides those people with valuable insight that should lighten the negative impact on your son.
Clearing the way for CJ doesn’t keep him from walking his path; it merely gives him a clearer road to walk and less opportunity to trip and fall.
Keep up the keeping up.
CJ (aka Carl)
I never thought of your son as special needs. I just thought of him as different. Different in a good way, a challenging way, but nothing more than different and unique. And each child is unique. Parents cannot parent the exact same way to each child because no two people are exactly alike.
So when I first started reading this post, I was a bit miffed that you would put yourself in the same category with parents that have an autistic or down syndrome child.
Then I started to think about it more. You do have a tough job explaining to people, preparing people and educating people about a gender nonconforming child. I can’t imagine that is easy or always comfortable. Maybe sometimes you prepare and rush ahead a bit too much. I’m willing to bet that sometimes you feel all that rushing ahead and preparing did you and CJ absolutely no good. I’m not saying not to do it, but that sometimes maybe letting things happen as they are going to happen is the way it’s supposed to be and that we can’t always change it.
I’m glad that CJ has you and that you are so devoted to allowing him to be the most beautifully unique person that he is.
“If my son had Down Syndrome or Autism or a peanut allergy, they wouldn’t blame me for his special needs. They wouldn’t find fault in me and say that I caused it.”
True! Today, parents aren’t blamed for their children having those special needs, but it used to be thought that children developed Autism because of mothers being “cold”. Luckily that’s no longer generally thought of as true. I was hoping this thought might help give you hope that society’s view of gender-nonconfirming children can change, too.
I enjoy reading you posts, as always, and I admire your strength.
I love reading your blog because we are traveling nearly the exact same path. My son is a gender creative kindergartener and I always wonder if we’re “doing it right.” We are more…restrained…with our son. He was a beautiful princess for halloween and he also cannot keep his hands off a twirly skirt or beautiful hair (even when worn by other people, so we are working on personal boundaries) but I don’t let him paint his nails and as much as he’d love to, I don’t let him wear makeup to school. I think it’s because the feminist in me doesn’t like to see any little girls with painted nails or faces, so I figure what’s good for the girls is good for S. But I know there is also a part of me that is trying to protect him (and me?) from looks and comments and bullying. I am so grateful to know that there are others who share the same uncertainty as I. I wish that CJ and S can get together for what I know would be a fierce playdate.
First off, let me say that I LOVE your blog. I have 3 young children of my own, so I definitely know the Protective Momma feeling! Honestly, I never gave much thought to the whole “choose to be gay vs born this way” debate. I naively assumed that some people had those tendancies as they grew up and they may or may not act upon them. But then I came across your blog several weeks ago…and boy did it hit me! To hear about a child as young as CJ having such genuine feelings and passion for “girly” things…wow. I couldn’t tell you how many tears were flowing as I went back and read all the posts! My heart was hurting for him. I know how precious children are, and to imagine having to deal with a world full of people who “don’t get it”…he’s very lucky to have such an understanding and loving family!
That said, I did want to comment on your account of CJ at the grocery store. You said that people were giving looks and comments. Well….I can tell you that if my 4 yr old daughter was decked out in boots, sunglasses, accessories, and singing that song into a plastic microphone in the middle of a produce section, I’d definitely be getting some looks and/or comments too. Gender completely aside, there are just certain places and situations where we (as adults AND as children) must “conform” to an certain extent. I totally get allowing our children to express themselves, but there’s a time and place for it.
Now this one is strictly from a parenting standpoint (and Lord knows there’s not just one “right” way to parent!), but what if you said no to CJ when he wants his fingernails painted or wants to load up on accessories when going places? Again, gender aside, there are many times that I have to tell my 4 yr old daughter “no” to some of these things. I understand your wanting CJ to be able to express himself, but eventually he’ll have to learn that he can’t always do everything he wants. And that has nothing to do with gender or orientation.
And in keeping with this super-long comment (sorry!), about your “special needs” question: As other comments have said, all our children are “special needs” to some extent. By loving CJ for who he is, and standing up for him when necessary, you’re doing the best you possibly could for him. It shouldn’t be necessary to warn people ahead of time about his uniqueness, unless it’s essential (like his classroom teacher, for instance). As he gets older, he may notice that you’re “explaining him” to people, and I can’t help but wonder if he’ll start questioning if there’s something “wrong” with him, you know?. 😦
Anyway, sorry for the long comment. I’m not in your shoes, so I can’t begin to understand it all. But keep up the good work and most importantly, give that precious guy a big hug. 🙂
What a great comment Meg, I agree with much of what you have said there.
There are some rules and etiquette to a civil society that should be adhered to (such as behaving oneself in a restaurant and not climbing under other people’s table) and others that are blatantly wrong and should be challenged (such as boys shouldn’t wear dresses.) The tough job of a parent for a gender creative child is if you say “no” to something (such as “no, you can’t wear your tiara to school today Johnny”) there is an internal debate: “Am I saying “no” to squelch his gender creativity or am I saying “no” because it’s simply not an appropriate behaviour, no matter what gender he is?” It’s a tough job and I think CJ’s mom is doing an amazing job.
Who in the world decided that boys shouldn’t wear dresses???
Contrary to popular belief, tiaras are appropriate for ANY venue. Everyone should have one. You wouldn’t beLIEVE the turn-around in your day just placing one on your head. I dare anyone to try it, look in a mirror and tell me it doesn’t just make you feel better about yourself. My gramma used to tell me, “ya know honey, if ever I’m feeling down, I just put on some bright, shiny lipstick and smile at myself in the mirror. Works every time for a quick pick-me-up”. Hmmm, I wonder if that works with C.J.’s brown lip gloss? Any bets? I’m thinkin’ yep!!
This is actually to Coccinelle but I can’t reply to them directly.
While it was always generally frowned upon after a certain age, that whole “boys shouldn’t wear dresses (or pink)” thing was largely due to marketing people in the 1950s; in the USA anyway. Here’s a nifty little article to read that goes into more detail, http://www.smithsonianmag.com/arts-culture/When-Did-Girls-Start-Wearing-Pink.html?c=y&page=1
My daughter is a dwarf. Believe me, I know how challenging it can be to raise a special needs child. The urge to protect them is SO strong! Even though she’s in her mid-30s now, there are STILL times when I want to step in on her behalf; I’ve had to learn to step back and let her fight her own battles. It was very difficult, especially during her early teen years when kids are especially cruel, but if you hang in there, step back when you can but step forward when you must, you’ll raise a child who grows up to be a self-confident adult. CJ will find his place in the world, and he’ll grow up knowing that he is loved fiercely for *exactly* who he is. It’s a delicate balancing act as a parent, but it sounds like you really understand what you need to do — and as a result, I know you’ll do a great job!
Sadly, if he had a peanut allergy you’d get the people who don’t believe in serious food allergies telling you that peanuts won’t hurt him. But I sure understand where you’re coming from — people who would have respect for my problems if I was missing a leg treat me like I’m just not trying hard enough when they see the problems I have that are caused by schizophrenia.
As always, best wishes to you and your family!
BIG Hug to you, first of all. I think your fears surrounding protecting C.J. from an abusive world are well founded, however, at some point he is going to have to fight his own battles. I can appreciate the tone of this blog, that this all seems like it’s going to last forever. It won’t though. One day your fabulous son will look at you and say, “Don’t worry mommy, I’ve got it handled.” By investing this time at such a young age, you are laying down a solid foundation of character and self confidence that will not be so easily broken. C.J. will bloody a bully’s nose without chipping a nail when his moment of truth arrives; because his heart will always tell him he is loved for who he is, no matter what. Exhale. Have a cocktail. You’re doing great.
You are demonstrating how much of a good parent you truly are.
I’d like to give you a huge hug. You’re doing a herculean task to provide C.J. with the life he deserves. I’m in awe of your strength and your love for your children. You’re a wonderful mother and a spectacular person. I wish you had an easier job but you’re strong enough and up to the task. I’ve raised five children and haven’t had to work as hard as you do. I salute you.
I’ve been following your blog for awhile now but normally don’t feel the need to comment since you say everything better than I can.
I wanted to give you reassurance that even though people blame parents or caregivers more often for gender nonconformity/creativeness, people also do blame parents for their kids being autistic or having other “special needs” issues. Gender creativity just has not become as no-no of an area.
And not to belittle special needs kids but I would argue that all children in some way would fall under this category because it is the caregivers job “to [be} an advocate, a protector, someone who will take a little extra time to explain things to him and someone to educate others on his behalf” as you say. Special needs children just need it 24/7, 7 days a week.
And as a person who falls under the transgender umbrella I sympathize with your not wanting to live, eat, and breathe gender all the time. Luckily C.J. is young yet and most likely doesn’t get accosted by others, or if he has, has you to back him up. Us adults are often accosted when on our own and it is harder to deal with sometimes. I sometimes think I’d be better off if I lived in a non-disclosing state, as I believe you have remarked a few times as well in regards to explaining C.J. all the time. But even though it’s tough, even though some people are asshats, if you as C.J.’s mom and I as my own person don’t tell our stories and live our lives as open as we can, then we are two less people who will change the way people think about gender. Keep up the good fight! 🙂
I straddle this crazy line, because I work with kids with special needs and in non-professional life, I am a member of the queer community and an advocate for all that is queer, especially for genderqueer and trans folks. I stumbled upon this post and had so many thoughts. It is unreal the similarities. I hate to say it, but some of my parents have been blamed (or blame themselves) for the needs of their very special children. I hate that there is blame involved — there shouldn’t be — for any parent raising any kid with the best intentions. My job, on paper, is to help my kids get therapy for their developmental delays and needs. But my real job is to advocate for the needs of my kids, to champion their successes (not their “failures”), to set goals and help them reach those goals. I understand, to some extent, the fears, the pain, the tough days. I wake up in the middle of the night, thinking about all 50 of my kids, worrying about them. I worry, especially, about the way they are and will be treated by others. I worry they will get bullied or passed over in school, as many children are.
One of the most powerful lessons I have learned from my kids, from my own life, from the lives of the amazing queer and trans people I know… is that, while language and community is incredibly vital, so is recognition of the unique needs of individuals. Every kid has special needs, yours — and my kids’ — are just different. More stigmatized. More difficult to meet, at times. Not easily defined. But every kid needs an advocate. I see the power of diagnoses, identities, and categories every day — I hold my identities strongly — but I also the power of leaving the boxes open for us to define as we change and grow. It’s a thin, messy line. I don’t know what exactly defines “special needs children” but I know that those kids, those parents, have some of the strongest hearts, the most amazing strength, and the biggest smiles. No matter which labels your child does or doesn’t fit, thank you for being one of those parents.
I was at dinner the other night, after a trans health event that a med student I mentor organized. A group of doctors, the med student, and I were discussing pre-pubescent children who have come in identifying as trans or gender non-conforming looking for hormone blockers. I referenced blogs like yours, and how much I appreciate that it is the parents who are standing up and advocating for a better world for their children — the parents who open the doors, refuse bad medical advice, stare down the looks, and offer a new model for supporting their kids. This is how my organization started — in the 1950’s a group of parents for special needs children got together. They didn’t want to institutionalize their kids. They wanted to educate their kids, raise them at home to be as independent as possible, and to create a world that offered them opportunities and support, not stigma. 60 years later, almost every institution in my state has closed. Early intervention in the natural environment — at home — is the standard for services. We still have a long way to go in (dis)ability advocacy, as in trans advocacy. But everyone had to start somewhere 🙂
(Most of my blog is adult content and not safe for work. But I’m leaving a link to a post I wrote about advocacy and my work.)
Well we have a special needs kid, a gender variant kid and a teenager. We are all kinds of special! You should check out our new blog : http://www.lifeuncharted5.wordpress.com
You are the best mom for C.J. and his Brother. I wish I had known you when I was a kid.
You don’t know it yet but you and CJ are PIONEERS! One day classrooms and workplaces wil be filled with gender noncomforming kids and adults, and the road to getting there may be tough and hurtful at times, but without people like you and CJ, it will take soooo much longer to get there. Thank goodness for your family, and thank YOU for all that you do.
I believe it!
Sorry I’ve been reading your blog for a while now and I am lost: I am not understanding how CJ being so self assured and filled with confidence and certainly at how and what pleases him creates a sense of his being a special needs child….. He sounds so ready to face the world with a belief that he is JUST RIGHT the way he is……. Rock on CJ!!!!