Sometimes this autism thing puts families and therapists in a little group, or club, and only we know the ins and outs, the rules… I post on Facebook and I blog about our lives, our trials, misfortunes, our joys and our triumphs. All in hopes that someone will be reading and will connect with us.
I want the people who don’t know as much about autism to feel a little closer to us, to not feel so out of our loop. I want people to understand our struggles and to share in our victories, small and gigantic. It makes my heart happy when someone comes up to me and says, “I read your post. It really helped me understand…”
Autism and my daughter, Emma’s, lifelong delays have varied throughout the years. We were told so many conflicting things when she was an infant and toddler. I stopped listening to “experts” and dove head first into books and the Internet. I learned how to make social stories, flash cards, replace chewing kitty litter with an apple instead, and on and on… until I found a knowledgeable occupational therapist and then a speech language pathologist that helped us on our journey. Then there were more therapists and pathologists and teachers and counselors. Many of these people are more than just professionals to me — they have become like family.
I am definitely one of those moms (and dads) who cringe when we hear someone say, “God chose you because you are special/strong/blessed, etc.” I want to scream when I hear that. I’ll keep religion out of it. But really, no. I just happen to be someone who loves my children a lot and would never hurt them. I’m pretty average, but I go above and beyond when necessary to do for my kids what needs to be done. It’s about that simple.
At our house, in our little world, autism isn’t puzzles pieces and primary colors, nor is it Autism Walks or t-shirts. I have a car magnet — that’s about as loud as we get. We have formed a pretty tight community with friends and school employees, and I think we all do a wonderful job of advocating for Emma and teaching her how to advocate for herself.
Autism is laughter. Tears. Screaming. Jumping for joy. Dancing. Singing. Kicking all the stuffed animals off the bed. Lying on the floor, refusing to move. Learning to tell jokes. Deciding that she can wash her hair all by herself. Three days in a row of being kissed, for the first time in years. Telling her I love her and getting no response. Taking deep breaths. Listening to her tell me the same things she told me yesterday and the day before and the day before that. Teaching her how to apply eye shadow the right way. Watching movies together (and her asking me questions throughout the whole movie). Autism is praising her little brother for being patient with her, when he would rather yell at her.
Autism is a lot of explaining. Repetition. Understanding. Compassion. Empathy. Love.
Many people know little about the emotional, spiritual, ethical, medical and financial difficulties of infertility. I learned the hard way through my own personal experience. Fertility is not something we’re comfortable discussing. When we or someone we know is suffering, we tend to keep silent. Silence creates barriers for authentic communication about what we’re experiencing and can cause feelings of isolation. We need to learn how to talk about infertility. Doing this well requires tenderness from families, friends, doctors and communities.
Being tender means being educated about how to respond. Sometimes when people share their experience, the response is either hurtful or unhelpful. Learn how to be sensitive so you can ease someone’s burden instead of making it harder. RESOLVE: The National Infertility Association has some excellent resources for family and friends, including a section on infertility etiquette.
Being tender means being empathetic about individual experiences, listening and respecting our decisions. Each person is unique. For some, the risks of certain options are too high. Others will analyze their risks differently. Some families are comfortable with treatments, adoption or other options that are not acceptable to others. Some of us who could possibly conceive will decide not to because the options offered are unacceptable to us for whatever reason. The emotional, physical, spiritual and or financial burden we would have to endure may be too great. This is still a form of infertility.
Trust us to make the decision best for us. Be supportive of our desires even if you don’t agree. Getting educated and then making these life-altering decisions doesn’t make our situation any easier. No matter the outcome, we need your tenderness as we navigate this challenging emotional path. Your tenderness is a gift which could give someone the bravery to speak about their experience. This is helpful for them and for the community because infertility is something we need to talk about.
I wrote the following poem about my emotions regarding not having biological children. It’s my way of speaking up. It’s dedicated to all those who are affected by infertility.
Through all the tears that I have shed And all the dreams I’ve made I can hear your little voice in songs Sweet child I did not have You would’ve had your father’s eyes And probably his smile Perhaps I would have named you Nora Or you might have been Eli
I will not see you learn to walk There will be no wedding cake You will not waltz in daddy’s arms Or keep us up at night They’ll be no picnics on the lawn No fairytales to weave You will not read my childhood books Or play with my old toys
Not only all romantic things Of childhood treasured dreams I also grieve to miss your tears Your little hand in mine As I’d comfort all your pain Or tend your fevered frame No one will ever break your heart As you would have broken mine
Someday, I will stop saying “if” and “yet” And start to say “don’t” and “won’t” And if someday you might find Another gateway to this earth Through someone else’s womb And someone else’s arms Love from me who gave you birth Though only birth in dreams
Thirteen years later, Henick, who is now a mental health advocate, set out to find the man from the bridge. Thanks to Twitter and Canadian TV station CTV Canada AM, Henick was reunited with the man who saved his life.
We special needs parents are used to our children being used by other parents as examples and teachable moments. It happens frequently, and I’d like you to stop.
“I’m so glad you know how to behave in public,” you whisper to your child. Only it’s not always a whisper. I hear you loud and clear. Even if I don’t hear your words, your disapproving glances convey your message.
Every time I’m out in public, I’m on high alert for you, and I carefully consider what I’ll say when you try to use my son’s seemingly bad behavior to teach your child about what’s acceptable and what’s not. Sometimes I’m able to explain to you that things aren’t always what they seem. But most the time I forget my script because I’m too embarrassed to talk to you.
Evan, my 9-year-old son, has autism. He doesn’t look any different than his typical developing peers — until he has a meltdown. Then he looks more like an out-of-control toddler than a third-grade school boy.
It drives me crazy when parents use Evan’s meltdown as an opportunity to show their child how not to behave or to reinforce their child’s exemplary behavior. While your intentions may be good, there’s a better, non-judgmental way to teach.
Instead of comparing behavior, ask your children why they think the other child is acting that way. Most likely, your child will say that the kid is being bad. An open-minded parental response is to point out that maybe the tantruming child just got hurt, is scared because he thought he lost his mom or any number of alternative explanations. While this may or may not be the reason for the child’s meltdown, at least you’re teaching your own children that they shouldn’t be so quick to judge because things are not always as they seem.
I can guarantee my son isn’t upset because I won’t let him have a cookie or because it’s time to leave the playground. More likely, he’s bothered by a sight, sound or smell that you or I barely notice but to him is an all-out assault on his nervous system.
Almost anything can set off a child with autism, from the sound of a fly buzzing to the smell of a banana. Some kids are bothered by the slightest change in routine. I know a girl who insists on always using a particular door to enter her school. If that door happens to be locked, she screams, cries and refuses to go through another door. Without knowing the whole story, a passerby can come to any number of incorrect conclusions.
My other favorite situation is when children are told, “It’s not polite to stare,” and their questions about another person’s looks or behaviors are sidestepped or redirected. I see this or hear about it mostly from friends whose kids have noticeable physical differences such as cerebral palsy or Down syndrome.
Your kids are curious, and that’s a good thing. They aren’t judging. They don’t mean any harm. They’re questioning something new. By avoiding their questions you’re actually showing them there’s something wrong. Instead, use this as an opportunity to educate your children; often, a simple explanation will suffice.
When my kids were younger and a friend would ask about their brother’s unusual behaviors, their response was simple but telling. “His brain works different,” they’d say.
Please don’t feel bad if you can’t answer your children’s questions. We don’t expect you to have all the answers. How are you supposed to know exactly what cerebral palsy, autism or Down syndrome are?
While I obviously can’t speak for everyone, I think most parents don’t mind answering questions about their child’s differences — especially if those questions are from another child. We know you may not be equipped to answer them, and we’d rather see you ask. Then, when your children meet someone with a disability or someone who looks different, they’re less likely to be afraid.
So next time your children want to know why someone is in a wheelchair or why he talks a certain way, why not take them over and begin a dialogue? You could start by saying, “Hi, my name is Jen and this is my daughter Jessica, and she just asked me about your son’s wheelchair (or she was wondering about his hand flapping).” By doing so, you’re not asking a direct question but instead starting a conversation and allowing the parent to respond in a way most comfortable for them. If you don’t want to approach them, you could say, “He was born that way, just like James was born with autism or Nathan was born with allergies.” Then you could add something your children can relate to such as “I wonder if he likes to play with Legos too.”
So please, next time you see a child with “bad” behavior or physical differences, it’s OK to use him or her as a teaching tool. Just do it the right way.
Many of my sweet friends have asked me the following question: “What do you want me to tell my kids about Julia?”
I love my friends for asking this. I love that they’re talking to their kids about Julia. I love that they want my opinion and my words. I love that they want to do it right. I love that they understand that through their messages to their kids about Julia and kids like Julia, we have the opportunity to change the world. That is huge.
The only problem is — I don’t know the answer. I want to have a super-smart, child-friendly, perfectly packaged, world-changing script to hand them, but usually I end up saying something like, “Hmm, that’s a really great question.”
It isn’t that I don’t have things to say — the problem is I don’t know what kids understand. In my defense, I’ve been living a version of Groundhog Day for the past eight years, existing somewhere in the 6-18 month range of human development. I don’t know what happens next! And this makes me the worst person on the planet for knowing how to explain something to a child past the age of, well, 1. Give me your infant and I will swaddle that sucker up and rock him to sleep like a pro, but give me your child ages 2-9 and prepare to watch me squirm.
I’ve tried; it just never seems to go well. I’m pretty sure at one point I tried explaining to a 4-year-old what partial agensis of the corpus collosum means. That went well — I think she stopped crying after an hour or so.
On another occasion at a play date with a few of our friends, I said to the girls playing with Julia, “It’s so fun to play with you guys. Julia is so glad you are her friend!” To which the oldest girl Maxx responded, “Well, if she is our friend, why doesn’t she talk to us?” Zing! “Hmm, that’s a really great question.” So that went well too — I think I only cried for an hour or so.
The point is, I don’t know what your kid understands. But you do. You’re an awesome parent. You know how to cater a message to fit your child’s developmental stage. So I can give a few suggestions, I can tell you how I hope the world will talk about Julia, and then I’ll let you take it from there.
Just a few things in general that I think are important to cover:
1. See Her
First, encourage seeing her. I know many parents are worried about their kids staring or pointing or saying something that might hurt our feelings (and honestly thank you for worrying about that to some degree; it’s really hard to have kids just flat-out gawking or pointing and see parents do nothing at all — so thank you for being conscientious of how your child reacts). But in the process of being concerned about our feelings, please don’t inadvertently send the message to your child to ignore Julia. If you see your child staring at Julia (or anyone, really) it’s your chance to model what you want them to do by saying, “There is a little girl, let’s say hi!”
Jules and I were at the grocery store one day when a mom walked by us with her two kids and she demonstrated what I just described so perfectly. Her kids were watching Julia, so she walked her cart right up to us and said, “Let’s say hi to this cute little girl!” And then she went on to comment on Julia’s cute shoes and the toy she had in her hand; she even found a way to connect her kids with Julia by saying something about riding in the cart and having a similar type of toy at home. She just did it beautifully. I started to walk away and ended up turning around, walking back to her and saying, “I just have to say thank you for talking to us and being so sweet and interested, that was so nice.” And we ended up hugging and crying in the grocery store — two stranger moms trying to do a good job for our kids.
2. Acknowledge Differences
Next, it’s OK to acknowledge differences. I’m big on this one. Julia is different — it doesn’t make sense to pretend she isn’t. I think that is super confusing to kids. It can cause them not to trust themselves, and we don’t want that. They’re seeing and experiencing something different when they interact with Julia, and it’s OK to acknowledge and talk about that. Just like our friend Maxx above who said, “If she’s my friend, why isn’t she talking to me?” It’s such a good point, and it’s a fair question because most of Maxx’s friends would be talking to her.
At this point it would be up to you how you might want to explain the difference. “God made her this way.” “She doesn’t talk, but she can communicate in other ways.” I think my answer to Maxx went something like, “I know, I know it’s different that she doesn’t talk to you, and most kids do talk right? But Julia is a little bit different, and she doesn’t talk. But that doesn’t mean she doesn’t really like you. She does really like you, and she really likes playing with you, but she just can’t say anything to you.” I don’t know how that landed for sweet, smart, sensitive Maxx, but it was the best and most honest I could come up with on the spot, and I think she appreciated that. I think kids appreciate our honesty — even when we stumble through it.
So, see us. Acknowledge the differences.
3. Be Positive
Finally, please, please, please try to frame the message about Julia and her differences positively. We can make differences seem scary or sad or bad, or we can make differences seem awesome. And this is how we change the world.
There she is, she is different, and isn’t different pretty awesome?
One evening not long ago I got a text from my friend Alicia about her daughter Makenna, who has lovingly befriended Julia at Sunday school.
The text said:
“I thought you would like this. I overheard Mak talking to our neighbor about Julia, she said to him ‘My friend Julia was born with a possibility.’ She probably overheard me saying to someone that Julia was born with a disability and just heard the word ‘possibility’ instead. How great is that?”
It’s great. It’s perfect. Born with a possibility! Makenna, you nailed it.
And that’s it. That’s what I want the world to think and say about Julia and her differences: not that she was born with a disability, not that she is less or scary or sad — but that she was born with a possibility, with so many possibilities.
A couple months ago, I took my daughters to get one of them, PSP, registered at her new school. As I sat in line my mind started wandering… and I thought about PSP’s new teacher. I wondered if we’d get to request a teacher or have one assigned to us. For some reason the thought came into my head, What if her new teacher were in a wheelchair? And my instant, gut reaction was: Oh no… I don’t want her teacher to be in a wheelchair.
To be clear, this was not because I was worried if this hypothetical teacher would be able to perform her job functions correctly. This was because the thought of a wheelchair made me uncomfortable.
And about a half second later I thought, Did I just think that? How could I think that? Me out of all people. Me, who has a daughter with physical handicaps, a daughter who also has a power chair. How could I, the mother of such an amazing daughter, the one who hosts a special needs spotlight on her blog, with the very direct effort of spreading the message of love and acceptance, think such a horrible thought?
Well, the answer is easy. I’m prejudiced. And I’m pretty sure you are, too.
Of course, given a few minutes of thinking through it, I knew I wouldn’t have had that immediate reaction for very long. In the long run, I know I would have been totally cool with and probably even really excited about the prospect of PSP having a teacher in a wheelchair. Regardless, my first instinct was No, I wouldn’t want that, and I’ve been thinking a lot about that reaction ever since.
However, that’s not even the worst of it. I met a woman a few months ago who also has a limb difference. Just one arm affected. As we stood there talking about limb differences — about her and my daughter — I realized I was a little uncomfortable… with her difference. While I no longer feel this way about her difference — in fact I think she’s a wonderful person and I look forward to each and every time I see her — that slight discomfort was there. Even if just for a few minutes. This isn’t the first time I’ve written about coming to terms with my prejudices, but I wrote about it in the past tense… like I used to have them. Now I’m facing the fact that I still have them.
Part 1: thoughts about where these prejudices came from.
As much as I hate to admit it, I have some prejudices and these prejudices are embedded deep inside, starting from a very young age. I remember once being at a swimming pool as a kid and seeing an older boy with Down syndrome splashing around wildly, angrily. No one would go near him and the lifeguards and his parents were trying to get him out of the pool. He was large and as a kid, I remember his presence and size seemed menacing. I don’t remember entire conversations but I remember snippets about him holding a kid under water and that his parents were brother and sister and that’s why he was “retarded.” When kids hear lies like that, it takes a while to unravel that lie from your brain. It was probably years before I understood that’s not what makes someone “retarded.”
Different is different. And sometimes, as much as we like to think we’re open-minded and unafraid we can really be shaken, disturbed, quieted, uncomfortable and simply ignorant of those who are different. I remember what it was like knowing I was going to give birth to a baby who would look different from anyone I had ever known.
I was worried that my immediate reaction would be one of hesitancy and not love. It wasn’t. I loved that little babe with my whole heart and loved on those limbs the way any mother does with her babies. But the worry was there because I was not familiar with different. I was scared of different.
Part 2: why am I telling you this?
A big part of my decision to host a special needs spotlight was because I wanted other people to see children with special needs the way we, their parents, see them. We love the same way we love our other kids, or the way you love your typical kids. We are grateful to be their parents. There is love, light, joy and laughter.
But what I realized is that just because I am a special needs mom, I certainly don’t have all the answers. The spotlights open my eyes as well; they are informative and educational for me. The spotlights have helped me know how to talk to other parents of children with special needs. Being “in the club” has not made me an expert.
And clearly, I still have prejudices.
Socially speaking, the very idea of having any form of prejudice makes you a bad person. You cannot and do not admit to having them. It’s more than just taboo. So if I can admit to you my prejudices — me, the mother of a daughter with special needs — then you can feel more at ease in admitting your prejudices. Which I hope will lead to self-reflection and perhaps a change in attitude and ultimately behavior.
To be clear, there are different kinds of prejudice. There is ignorant prejudice, and there is hateful prejudice. I think most of us fall under the ignorant category. But just because most prejudice doesn’t lead to hateful and deplorable acts of violence and intolerance, ignorant prejudice even in its most naive forms isn’t good. Even ignorant prejudice can lead to avoiding people and their families. Ignorant prejudice can lead to unkind thoughts and actions — ignoring, bullying, teasing. Ignorant prejudice can lead to exclusion, fear and name calling. Ignorant prejudice can lead to people not getting hired for jobs. And yes, eventually, ignorant prejudice can lead to violence.
Part 3: what can we do?
My first answer, is I don’t know. This blog post is only going to do so much. Like “drop, in a drop, in a drop of a bucket” so much. But it’s something. My hope is that anyone who reads it will seriously consider the prejudices they have. Please think about them. I don’t care how liberal and open-minded you consider yourself… somewhere deep inside, you have prejudices. Perhaps you are uncomfortable with people of a different race, a different social class, people who are overweight or, as discussed, people with disabilities.
Once acknowledged, the next step is to think about the extent to which those prejudices affect your thoughts and actions. Finally, think about how you can change them. For me, I can honestly say that self-reflection has helped a lot. Once I recognized my feelings for what they were, and then asked myself, “Why are you feeling this way? What is making you uncomfortable?” I was able to move past these apprehensions. I’m not saying I’ve cured myself of prejudice forever, but I really do feel like I understand why I had those thoughts and feelings in the first place, and I know I have the guts to face them should they come up again. And now that I’ve faced the ugly truths head on, I no longer feel like those things are issues anymore.
Another BIG thing, that is almost always pointed out in my special needs spotlight series, is to talk to your kids about people who are different. Especially if they see another child with special needs. Do not, I repeat DO NOT, shush your child and rush them away. That confirms their fears that something is wrong with being disabled, when that is certainly not the case. Open a dialogue and let your child ask their questions with you by their side to mediate.
I don’t have a tidy little closing for this whole thing, but I hope it’s been helpful. I hope it was meaningful to someone out there. Feel free to share your thoughts and feelings on the subject. Although I’ve never really had this problem, I just ask you to please be kind in your comments.
So that’s it. I’m prejudiced and so are you. Let’s talk.
The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.