don’t let the red shirt fool you

Last night, I posted the following on Diary’s Facebook page.

A little over a year ago, my dad sent us a beautiful set of brand new dishes as a (very) early Christmas present. I was thrilled, as I’d been dying to replace the ones we had. Brooke was not as enthusiastic. In fact, she would not, could not eat green eggs and ham or anything else off of the new dishes. For over a year, she has steadfastly refused to go near them.

Tonight, without a word, she went into the cabinet and grabbed a dish. A “new” one. She de-sandwiched her ice cream sandwich on it. She brought it into the den and ate her unsandwich, as though eating off of a plate that she’s been avoiding like the plague for more than a year was the most natural thing in the world. As she brought the plate to the counter, I asked her about it. “Yeah,” she said, “I tried it. And now I like it.”

My girl is on no one’s timeline but her own, but man, when she’s ready, she’s ready.

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{image is a photo of Brooke leaping through the dining room and into the kitchen as part of the circular laps that she’s doing around the house right now as I type. #AsYouDo}

Your responses were wonderful, as they always are. Those of you who inhabit this world with us celebrated the accomplishment with Brooke. Many of you simply celebrated her.

And then one reader wrote, “Sounds like a spoiled brat to me. But then again I am .. old fashioned.”

And I get it, I suppose. From the outside, without context, it might just look that way. It might look that way when she shrieks in a public place and, instead of getting angry, I crouch down and quietly ask if she needs to leave. It might look that way when she begins to cry in a store and still gets the toy that she asked for. It might look that way in school when she is allowed to bounce and wiggle and jump in class.

Without any further information, I have to admit that, as much as I’d like to, I can’t really blame this reader or other casual observers in any of those environments for judging us – judging me. But I can tell them why they’re wrong to do so.

This is what I wrote back.

My daughter is autistic. Her brain is wired entirely differently from yours and mine. To call her a spoiled brat is unfathomably insensitive and uninformed.

She is a sweet, generous, hilarious, loving kid who has some monumental struggles in this life. She works harder than anyone I know simply to get through the day in a world that doesn’t fit. Allowing her the freedom to control one of the few things that she can control with literally no ill effect on anyone is hardly spoiling her; it’s loving her.

I had planned to leave it at that, but found myself typing again a few minutes later.

I would also add that it would be wonderful if we could all take care not to judge one another without context. The world would be a whole lot more compassionate place if we would reserve our criticism until we really knew what and who it was that we were actually criticizing.

So to review, this is a spoiled brat:

verucasalt011

{image is a photo of Veruca Salt}

This, on the other hand, is a beautiful soul doing everything she can to get by in a world full of people who just don’t get it.

IMG_1002

{image is a photo of Brooke wearing her Paper Clouds creation.}

Please don’t let the red shirt fool you. That’s pretty much all they have in common.

42 thoughts on “don’t let the red shirt fool you

  1. A perfect response to an incredibly insensitive unaware individual. I hope you gave them food for thought and they take the time to THINK before they cast judgement and speak so carelessly. Brooke is working extremely hard every single day and you are always there to guide her. Keep doing what you are doing and how you are doing it. Love from the UK. XXX

  2. It’s interesting because a professional once talked to me about how much a certain behaviour was ‘manipulative’ and my reply was that yes – in SOME ways the behaviour is intentional and designed to impose order / control … but in my opinion / perspective behaviour is COMMUNICATION … and some people (especially Autistic / Aspie people) feel SO out of control in so many things in their life that they really do NEED to impose some order / control on a few of the things they actually can! (in particular this was in reference to NOT being able to control their own emotions / anxiety / depression (or as we like to call it ‘overwhelmsion’! 😉 )

    • It is easy to see why Jess is such a wonderful loving parent…it seems she had great examples! I love the fact that you always comment and are so loving and supportive! My mom is very similar and I consider myself very blessed and can only hope to be half the mother to my son that she is to me!!! ❤

    • I just read this site today, as a friend of mine sent to me. I am the mother of two sons ages 36 and 32 and both collectively dealing with Autism, Asperger’s, Tourettes Syndrome, O.C.D. and some seizures. I have encountered many people through out the years that have no understanding, and there was little known back then. I have taught my boys to respond to the cruel behavior of other people by responding to them with “I AM AUSTISTIC, WHAT IS YOUR EXCUSE FOR YOUR BEHAVIOR”… it has to make them think a little…maybe?
      I know one thing for sure…. we should not reject what we do not understand for with understanding comes acceptance. My boys are my life and they have taught me so many beautiful and wonderful things in life. I cannot imagine my life without them being in it.
      Keep up the great communications….that is how we learn…
      Believe in your heart and mind that progression WILL happen.
      If I had given up years ago like I was told too my sons would not be the wonderfully autonomous young men they are today…
      Yes it is hard, exhausting and sometimes almost unimaginable BUT
      IT IS WORTH IT!!!!!!!
      Kathleen

  3. Before I became a parent, or started working with some very amazing kids, I thought the same way as some of those other people. Thinking some of these kids needed some good old fashioned discipline. I’d see kids in the store having melt downs. I’d think to myself, “I’d whoop my child’s butt!!”. Then I started working with Catholic Charities. I was a DCS care taker. They paid for my education and training to deal with every aspect of disabled teenagers, with every illness, from autism and down syndrome, to schizophrenia. But they were wrong. So very wrong. They taught restraint, instead of understanding. They taught discipline instead of attention. They sought out medication instead of knowledge. The only aspect of my job I agreed with, was the fact I was teaching them independence. Maybe not in a contemporary way, but I would find solutions to their problems. Listen instead of discipline. After almost 3 years, I’d had enough. I’d seen too many things, that needed fixed, and no one willing to change policy. I hurt for some of these children. I left the field altogether. Then, a few years later, my brother had his first child. Man, was he in for a fight! He fights a lot of the same battles as you. My nephew, who I had a conversation with for the first time this June, is now 10. He is Fantabulously autistic. We went out to eat when he was about 2. That was the first time I met him. He had serious sensory issues, and would have seemed like a spoiled rotten, out of control, brat kid, had I not known. My brother felt bad, because we lost contact and just found each other again, and my nephew was not comfortable, so he had to leave. He was OK for about 20 minutes. The reason I’m telling you this, is the waitress made a snide comment, after they left. I lost it. My husband had to pull me out of the restaurant, before I drug her to the street, and showed her “little spoiled brat kid that needs his ass beat”. I tried to explain. I was polite, and respectful to her. She was rude, obnoxious, and yelling and cursing in my face over some fries on the floor (which I picked up). I was 26, and ticked. She didn’t want to “hear my excuses”. If it weren’t for my husband, I couldn’t tell you what the outcome would have been. My own 2 children were with us. She just had no interest at all, in being informed. Now, I understand more and more. It’s sad that some people don’t want to believe that autism IS a medical condition. They, like that waitress, think these kids need their butts whooped. I don’t agree with the lady’s comment at all. You handled it with perfection. I hope she listens. For all the kids.

  4. I personally think she is a beautiful well behaved and loved amazing child. My son is in the middle of testing for assumptions of having autism or aspbergers. He has some issues like your sweet pea but they are worked out in his way. A lot of family members gripe and don’t like the way i mother him but you know what, i dont care. We work with him on his level. It’s not simply him getting his way or us giving in, we work with him the way his mind works. His teachers at school do the same thing and things are amazing. I have always been intrigued by how the autistic mind works, especially savants. I’m getting ready to start college next semester for human services and I’m hoping to do casework with autistic children and adults. I believe i would love it. Good luck with your sweet lil angel. I can’t believe how harsh some people can be. I loved your reply to that judgemental person. And Miss Brooke is an amazing child and you are doing a wonderful job mama. Keep doing just what you feel is necessary and things will be amazing. Outsiders will probably never understand , but we are our childs advocate and we must educate the ignorant. 🙂 ❤ to Miss Brookey and her mama!

  5. Forget her being autistic, she is a human, we all have our struggles and children especially should be able to have the time to figure stuff out. When i get mad i have to take deep breaths, when I am sad I cry, when I have a lot of energy I walk or goto the gym. I am 31. We do not give our children such freedom we can not there has to be rules so why can we not understand thier breakdowns and need for contol as emotional responses to things happening around them, we should give all chidren the patience you ive our daughter so that can learn to control themselves as best they can.
    I applaud you for reminding me to take extra time with my non special need child.
    PS your daughters energy is a wonderful beautiful thing. I wish she could share it x

  6. How about if we don’t judge at all? None of us can fully comprehend the “context” within which anyone else lives, so let’s take it one step further and practice acceptance and encouragement for our fellow travelers! You are doing a great job, mom!

  7. People only know what they are exposed to.

    You won’t learn math if you aren’t exposed to it.

    Tolerance can be taught. It isn’t always just a natural reaction as well.

    You won’t learn about autism and the differences if you aren’t exposed to it. And your blog teaches about autism, love, acceptance, tolerance, doing as we do, just being. Living every day in this world together as different people with different needs. With or without autism.

  8. You know, I’m pretty old fashioned myself but my mama taught me that if you don’t have anything nice to say, don’t say anything at all. Perhaps your commenter missed that lesson in life?

    Anywho, I’m glad that you set them straight and I’m proud of you for standing up for Brooke and giving her the room she needs to find her own comfort zone. 🙂

  9. I love this, your response was spot on. You are a class act, because I am sure my response would have been a lot more mean.
    My son was born with quite a few issues, we spent 2 months in the NICU, part of his issue was a tramatic brain injury during or before birth. They told us, we don’t know what he will be like tomorrow, two years or five years from now. He is 17 months, smart and loving, he is behind developmentally and does things his way. He doesn’t crawl like other kids, but he is proud and happy with hisself.
    There are days I wonder if he will be autistic, but then I remember, I will love him no matter what. Thank you Jess for sharing your life with us.

  10. In the first place, I get entirely too sick of people who feel the need to judge other parents on the way they parent. If it’s not your child, keep your nose out of it. That’s my feeling anyway. Having one autistic and one ADD and one gifted, I’ve had/seen/dealt with it all. I’ve been told my kids are spoiled b/c I have allowed them to bring hand held game systems with them to restaurants or such (with earphones mind you) in order to help my two frequent sensory overloaded children cope with the noise and pace of the place. I have been told when my oldest was younger and I’d request the waitress to put me in a corner so that I can allow him some freedom to get down out of the chair and do his own thing without bumping other patrons that I’m being an enabler, not teaching my child how to control his outbursts. I’d frequently point out that it’s hard enough for him to keep them in balance at home, much less in public, but does that mean I should hide him away because he can’t control himself some days? NO! I refused! And from what I just read, you’re on the same page with that!

  11. Here’s the thing……putting autism aside for a minute, as parents we all choose our battles. Perhaps in someone else’s home, a child would be forced to “get with the program” so to speak. For me, whether it’s due to my child’s autism or not, getting into a power struggle over the choice of dish is not worth it at all. I choose to save my energy for the big things and this one just doesn’t qualify. And old fashioned or not, that sort of rigidity is too exhausting for me.

  12. What a wonderful post. Our daughter with ASD is in a mainstream class and had a significant meltdown last week. The teacher said while she understood what was going on, she could see how others would judge our daughter and think she was just acting spoiled. I breaks my heart to hear that and yet I know it is true because the other children and their families don’t know about her diagnosis. The fact is that no one ever knows what someone else is going through. One of my favorite quotes is: “Be Kind. For everyone you meet is fighting a battle you know nothing about.” I hope people are kind to Brooke and your family as you make through each day – for each one is an accomplishment.

    • that’s exactly why we were adamernt about never hiding Brooke’s diagnosis from her or anyone in her world. i’m so sorry. it hurts.

      • I’m so glad you are in this world. I love your perspective and love how it helps me when I am weak. I want to be you when I grow up!! ~xoxo~

      • Jess, you never have to be sorry. Without ever meaning to or knowing, you gave birth to a unique, fun-loving, caring and exquisitely wonderful girl that ushered in a new era in how to accept people for all their accomplishments, flaws and faults. You and Brooke have taught me so much about how to deal with my own child on a day-to-day basis and for that, I will always love and thank you all.

  13. Honestly, I don’t understand people that comment on a page like yours – or practically any page – that they aren’t familiar with in at least a basic way. I just don’t get it. If you can’t muster up the energy to read the “about” section and/or a few posts, then in addition to being “old fashioned” (translated-to hide-bound to take another person’s perspective), these people are lazy and/or shallow.

    And I took a few minutes to “reserve my criticism until I really knew what and who it was that I was actually criticizing.” 😉

    You rock!

  14. Save the “spoiled rotten” label for the children that are raised to feel “entitled” to anything they want and act accordingly! I had an experience last year in a 2nd grade class; volunteered for the afternoon; I could NOT believe the “superior attitude” a couple of students exhibited! They had no respect for anyone or anything, and truly earned the label of “spoiled rotten”; it took most of the afternoon to convince “them” I was in charge, and wasn’t backing down or giving in to their unacceptable nonsense. Sure opened my eyes to what teachers have to deal with daily. I came away with an even healthier respect for teachers; can’t say that I could ever deal with their challenges on a routine basis. Guess I just wasn’t called to teach; however I taught Sunday School for years (when I was much younger) and rarely encountered such behavior in MY kids. Several children throughout those years actually taught ME a few things. When I encounter these specific students today, our conversation always gravitate to those classes where we learned from each other. Wouldn’t trade those years for anything; challenging? yes, but still cherish those years and the great learning experience they provided.

  15. YES. Exactly. But hold on. Maybe Veruca had challenges, too? Should we really be judging her?

    I say that as a joke, but also in all seriousness. Why do only our ASD kids get that “don’t judge until you know me” pass? Why not our NT kids? Why not us?

    Sometimes my autistic son IS being a brat. If he can do anything anyone else can do, he can also take advantage of me, or be manipulative, or use his autism to get his way. He’s definitely smart enough to do that. But you (the people-who-are-not-his-mother ‘you’ not the Jess you!) wouldn’t know in a given situation if he’s being a brat or being a brave, awesome, making-the-best-of-a-world-not-designed-for-his-neurology kid. So like you (this time I DO mean the Jess you!) said above, I wouldn’t want the world judging him unless they know which one he’s being, and it takes years and years to know that.

    Similarly, my 17-year-old, while unlikely to throw a public tantrum or behave in the sort of way that gets my son unwanted looks and attention, sometimes behaves in ways that might seem bratty or disrespectful, and while sometimes that’s exactly what’s going on, at others, there’s a reason, or an understanding, or it’s just our sense of humor. So no judgments there, either, please! She’s no brat, nor is he. Nor is Brooke. Nor is Katie. We know it; the rest of the world just needs to butt out.

  16. Long time reader posting for the first time. Just needing to share.

    We had an amazing health care team in place for a stretch of time. One of those folks, my daughter’s psychiatrist, had to step away from medical practice. It has thrown us into a year and a half of unknowns with people who want to care but have disapproved of the med levels, haven’t had time to invest in understanding – just judging. In the midst of this, my daughter entered her teens, so hormones have been adding to even more interesting developments in function, ability, attitudes. My daughter seems to bounce back and forth between able, unwilling and clueless about how to approach life, and it can be so difficult to understand for the other three of us in the family. Today’s post reminds me – it’s just that her brain’s wired differently. She has more understanding of “normal life” than she used to, but that doesn’t mean she gets it. It doesn’t mean she can *truly* understand what I’m asking yet. All I asked for yesterday was that she empty the two laundry baskets in her room (one of which is bedding.) Since it didn’t happen at all, it really hurt my heart. Did I remind her? No. i was at work. Did I ask her dad to remind her? No. I wanted it to be her job. I didn’t set any of us up for success, and some days, success would have happened. Yesterday was not someday. Tomorrow might be. There’s no way to know, and that’s the hardest part of this journey. not knowing and not having a way to know until the next moment. Hope can dwindle in those moment.

    That’s why I’m grateful for this page. For a chance to see pieces of another concurrent journey. A way to remember as alone as I feel, others do understand pieces of the struggles and successes. To see successes and remember they’re there. Thank you for sharing, Jess. For so many reasons.

  17. Well done Jess! It makes me sad and frustrated when people are judgemental and make comments without residing in our world. Last night as I watched my girl sleeping at our hotel after a long, stressful day I was celebrating Brooke’s success with the new dishes. Definitely in her time ❤ happily not everyone is judgemental. Today we were blessed to visit a science/toy store that had staff that totally let my girl be flappy and happy without batting an eye at the fact that she's older. I will be contacting the manager of the store with my bouquet of happiness 🙂

  18. I enjoy your posts every day. They are a highlight of my newsfeed. They make me laugh, smile, and cry.

    You are an excellent writer, first of all. But you share about yourself and your family in a very real and honest way that delivers poignancy and relevance. I think you are a beautiful and real person through and through. I think you and your husband are raising amazing and strong girls. I appreciate that you are sharing them with all of us.
    I know it helps me understand my little world a little better to hear about yours.

    I am not a parent of, nor do I have close contact with someone who is autistic. I have in the past, but not on a daily basis. My latest job is at a company that has done a lot of work with groups researching autism, though. For me, the take-away from your blog is that everyone deserves respect and compassion and understanding. It doesn’t take much to do something kind and the damage of narrow-mindedness and thoughtlessness is long lasting.

    Thank you so much, to you and your fabulous family for allowing you to share so much of yourselves with all of us.

    I think your response to that post was spot-on and a big reason why that person was able to be humble and apologize.

  19. Your daughter looks very, very happy!!!! Good for you & thank you! When a child or adult can do well they will! I have my favorite cups/mugs and plates and so did my great grandmother. Thank you for sharing.

  20. It was amazing to read all the comments condemning and judging the reader who made the unfortunate statement calling Brooke a “spoiled brat” while disparaging her/him for being judgemental. Maybe this person is not as enlightened about autism as the rest of you, but you have certainly “humbled” that reader. Hope all feel really good about their tongue-lashing.

    • Alina, if you go to the diary facebook page youll see that she graciously apologized, I gratefully excepted, and we welcomed her to the community.

  21. Jess, you handled that person with a lot of grace. There are so many snap judgements out there. What we see is not the person. There is so much more to a person than the exterior. I just discovered your blog and I am in awe and much respect to you for your openness and honesty and intelligence. My husband and I were at odds whether to have our son diagnosed……he won and our 11 year old has carried on undiagnosed. I don’t feel free to speak about it especially to our son. I wish my husband and I were on the same page…..but husband is much like son. Anyway, thank you for your insights and ideas that I take to heart and appreciate. There will always be people who judge others haphazardly. All of us have problems and challenges. Just wish people could be kinder. Like your response!

  22. Even if for one minute I thought that Brooke was spoiled (and I don’t), one thing I have learned over the years is to keep my opinions on other people’s children to myself, especially since I am not a parent.

  23. Jess, once again you lead by example with class and compassion. As angry as those comments make us, educating is so much more helpful and constructive than lashing out and shaming. (As good as that feels sometimes!) Your original post was so timely for us. Our son eats on sectioned trays at home because for a long time, different foods touching was just too much for him and it was an easy solution. Well he’s getting older and I’d like us to move on. He eats off regular plates any other time except dinner at home, so we *think* he’s ready. I’ve ordered a cool set of planet plates for him for Christmas and I am hoping to phase out the lunch trays. Even if it takes all year. 😉

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