Sunday morning – 1:30 am. The night had just wound down. It was FAR past my bedtime. John was headed home, the last of the local ladies had hit the road and those that were staying over had just retired to bed. I was far too wired to think of sleep. The evening had been a whirlwind of activity and emotion. I was exhausted, but I knew that sleep was not going to come quickly.  

I headed down to the office and logged onto the computer thinking I’d quiet my brain with some idle activity. Perhaps a game of Scramble or Word Twist on Facebook or a little light blog surfing. The computer screen began to glow, brightening the dark room as it came to life.

I typed no more than www. and the computer’s browser filled in the rest. As soon as I got to wordpress, the night was changed. 

A new comment glowed yellow, awaiting approval. 

I feel your enthisiasm and energy for helping autistic children.
But are you doing it for those who are severly autistic-what is her daughter’s diability and diagnosis? She seens much fortunate than many children and adults. Do you know what it feels to have two autistic children? One that after
12 years of struggling to keep her home with loved ones and to let go of your dreams for her to send to her to a residential program (Don’t worry it is the best in New England! But, in addition to having a beautiful aeverely autistic daughter (who in any parents dreams would love her to ice skate like your daughter) has an autistic son! I think you know who I am talking about. You have read her blog and did not mention to her what is going on this weekend. She has struggled for many, many long years to help both her children succeed. Do you know what it feels like to have to send your child away after giving your all to help her in a home setting. I do not think you do. You should be ashamed about talking about a “god awful quilt” that was donated to you auction. Do you know the most important thing in a gift is that it is from the heart! You should be ashamed of yourself. I am advocate for autism, and I have read many blogs, and do you know you have a neighbor in Plymouth, Ma who has more than one autistic child? I think you do and it shameful of you to not let the mom know of the event you are holding for autism.

I will be holding 3 lectures with guest speaker Jenny McCarthy this calendar year. I will make sure your are extended an invitation but by no means any praise. Many people think you do what you do for you, not for your daughter and other children but for you. You give because you want to give and to help others and not for the praise!

I thought my heart would pound out of my chest. I was shaking. I could feel the commenter’s anger steaming from the glowing screen, sucking the oxygen out of the room. 

I crafted a response. I edited it. I re-edited it. I had to say something. On so many different levels, I didn’t feel like I could let it go unanswered. There was so much raw emotion. Here’s what I wrote.

Wow, I’m not even sure where to begin to answer what you’ve thrown at me here. I’m aghast that somehow I’ve incited so much passion and anger.

I do not know, nor have I ever or would I ever claim to know, what it feels like to have two children with autism. I can only speak from my own experience with my little girl. My heart goes out to anyone who has to struggle with the kinds of challenges that you describe. My experience with my daughter is obviously very different.

You ask if I know what it is like to have to send my child away. If you know anything about me then you know that I do not. I cannot possibly imagine how difficult that must be for a parent.

I do not presume to represent anyone but myself here on this blog, or anywhere else for that matter. As I said, I can only speak from my own experience. I can only hope that by doing so perhaps I can empower others to feel comfortable doing the same.

I have never professed to speak for an an entire group of people. No one can. I have said time and again that our experiences are as unique as our beautiful children.

I do what I can to advocate for my child and to demystify autism in the best way that I know how – by speaking from my heart and by sharing my story in as human and as real a way as possible. You say that you are an advocate for autism. I am sure that you too are advocating in the best way that you know how. We all come at it from our own perspective and hope to make some small impact in our own way.

You say that it is shameful that I did not let a mom in Plymouth know of the ‘event’ that I was holding for autism. Last night’s dinner was in no way shape or form an ‘event for autism’. Rather, it was a gathering of friends that grew organically from a thread of comments on this blog, in response to the raffle to raise money for a service dog for a friend’s little girl. From the comments, an e-mail chain began and the next thing we knew we had plans for dinner. I would never purposefully exclude anyone and I truly apologize if anyone felt that they had been left out, but please understand that this was not an ‘autism event’. It wasn’t even something that I created!

As for your second to last sentence, it is true – but only if you are speaking specifically about writing. I do write for myself. I have never claimed otherwise. I write for a sense of community and understanding. I write because I connect with wonderful people with whom I find common ground. I write because it makes me a better parent.

Anyone who knows me – who truly knows me – knows that at the very core of my being I am a mother – that there is nothing in this world more important to me than doing right by my children in every way that I possibly can. Every single thing that I do ultimately comes back to that. If anyone sees me differently so be it. In the end, there are really only two people that I need to prove myself to (Katie and Brooke).

I’m sorry that I somehow made you so angry and I am terribly sorry that the mom in Plymouth felt left out.

As advocates for people with autism, we ask people to open their hearts to those who are different from themselves. We ask them for compassion and tolerance. I hope that we can interact with one another from that place – a place of tolerance and understanding and above all, respect.

I’d hate to see any of us spend what could be useful and productive energy tearing people down.

All the best to you.

My eyes finally closed sometime after 5am.

I know y’all are eager to hear about the evening’s gathering, and I promise to share it with you. But I just can’t stop chewing on all of this first.

The thing is, I get it. And the more I think about it, the more sense it makes to me. 

I remember the first time I was called an ‘autism advocate’. It was right before I spoke at the kick-off for the Autism Speaks Walk. I received an electronic flyer describing each speaker. And there it was, in writing – Jess, autism advocate. I stared at it for a few minutes. Really? Is that what I am? I had never thought of myself that way. But I guess it made some sense that from the outside, that is indeed what I was becoming.

When I spoke at the event, my knees knocking together from nerves, I said,  “I can’t speak for you. Your child’s experience is different than my child’s. Your experience is different than mine. ”

I know full well that my experience is at the shallow end of the autism pool. Relative to many others our challenges are watered down, manageable.

There has never been a moment when I have not been acutely aware of how blessed we are that Brooke was painted as lightly as she was by autism’s brush. Dumb luck? A  missed half dose of flu vaccine? Random genetic shaping? No idea. It just is what it is. I don’t take it for granted. Ever.

At best, the system of grouping such varied degrees of neurological affectation under one umbrella is confusing. Even after all this time and discussion, I still have a tough time explaining the concept when pressed. I don’t doubt that over time the process of diagnosis will become more refined. I would imagine and hope that the various gradations and different manifestations of what we now know as autism spectrum disorder will be broken down into myriad specific sub-categories.

But for now, the name that is given to Brooke’s particular set of challenges is no different from the name given to those who are far more severely impaired. And when I stand up (literally in front of a crowd or metaphorically on my blog) and say that I am speaking as the parent of a child with autism, perhaps that’s not as clear as it needs to be.

I understand the commenter’s sensitivity to that distinction. It makes perfect sense. My life is very, very different from the life of the mom described in that comment. Our challenges are not remotely comparable.

I started this blog as a personal outlet. I did not write with any goal other than to maintain my sanity. I wrote because I was overwhelmed and I needed an outlet. I sent my posts to close friends and family members and never had any expectation that it would be anything different.

But it became something very different. It became interactive. It became public. As people began to share it with each other it became even more public. And so, when a dinner organically springs from its pages, I guess someone out there is bound to view it as ‘an event for autism.’ And sadly, (heartbreakingly) someone is bound to feel left out.

Quite simply, I don’t know everyone. I can’t. Circles intersect and the world is small, but there are still countless wonderful bloggers that I have yet to encounter. Happily though, we are never more than one comment away from a new connection. That’s all it ever takes.

I can’t wrap this up neatly. I don’t know how. It’s too messy, it’s too painful. It matters too much. But I’ve got to come up for air.

I will write about dinner in the next couple of days; I promise. In the meantime, you can always head on over to John’s place and see if you can guess which shoe is mine.

42 thoughts on “but

  1. Jess –
    Can you reframe this? Can you think of it as, yes, of course there are varying degrees of affectation, just as there are with many conditions (think diabetes, depression – heck, even a heart attack). And even though your precious, beloved Brooke is wading in the shallow end of the pool YOU have thrown yourself into the DEEP END of advocating.

    You took an iPod worth a couple hundred dollars and raised how much money for Autism Speaks? You walk, you talk, you educate, you advocate – on behalf of all children with autism, not just those in the shallow end.

    Please, please! Don’t censor your words and thoughts because this person lashed out at you. The way our kids are diagnosed is not something you need to apologize for, nor is all that you do for them. Speak your mind, Jess. We want to hear.


  2. While when “the autism brush” painted Devin, it painted him more severely then Brooke, I don’t feel that emotionally you have any easier of a time with autism. It is devastating to hear your child has autism. It doesn’t matter the severity. Yes, the daily challenges for moms with kids on the more severe end of the spectrum are harder but you speak for all of us. When you raise a ridiculous amount of money for Autism Speaks, you don’t say, Hey use it only for kids on the mild end of the spectrum. You are bringing awareness for all of our kids! For that and for being a truly inspiring role model, a friend and an autism advocate!

    Don’t let the little and mean spirited people stop you! I’ve got your back!!!

    Love ya!!

    xoxoxo Jenn

  3. Knowing that Jess has all of you backing her up means so much to me. Thank you, thank you, thank you!

    It was such a pleasure and joy to meet so many of you this weekend…it was wonderful to be able to put faces and voices with the names that Jess talks about so lovingly!

    Again, thank you for being a village for my wife!

  4. Lori P –

    Perhaps I wasn’t clear on the point that I didn’t invite her because, despite the commenter’s suggestion – or rather accusation – to the contrary, I do not know the woman to whom she refers.

    I will say that I have met scores of people at autism speaks events and I have surfed my way through heaven knows how many blogs so it is certainly plausible that we have crossed paths. I’d hate to think that I wouldn’t remember having met someone, but hell, I don’t remember what I ate for breakfast this morning, so I’d never discount the possibility. Even so, this is just not someone who I know.

    I don’t think one can be blamed for excluding people they don’t know.

    As for the quilt – really? Point taken. Writing about in the way that I did was less than gracious. But I didn’t respond to it because I thought it was rendered ridiculously insignificant by the other issues and accusations in the comment.

  5. Jess, I admire your eloquence and diplomacy in handling this situation. There is no easy way to do it. I’m sorry that you were attacked in this way. I don’t understand why someone would tear down a fellow autism advocate.

    Know that you always have my unconditional support, respect, and love.

  6. Jess – I am still chewing on this too. I have had varied thoughts and feelings about this since I saw the posts last night (the more polite ones I have already shared with you). I could say more privately but I want to say publicly how wrong I find the negative words that Jenny directed towards you. As I went to bed and as I woke up thinking of you, my deepest wish is that you do not let these words in. Hear them, reflect on them (as you have) but DO NOT let these words find a home in your mind or heart. You are such a strong woman but I know that there are weaknesses in your armor. Do NOT let such negative words crack your weak spots right open and make you doubt yourself and the choices that you make. Jenny does not know you like so many of us do. When it comes to her characterization of you, SHE IS WRONG. DEAD WRONG.

  7. Yeah it’d be nice if I finished all of my thoughts. “For that and for being a truly inspiring role model, a friend and an autism advocate, I thank you from the bottom of my heart! “

  8. I know how obsesssed and upset I would be over Jenny’s post if I were you, I only hope you can see the “big picture” better than I would be able to. I am not the eloquent writer you are, but please understand what I’m saying: DO NOT FEEL YOU HAVE TO EXPLAIN, JUSTIFY, OR CLARIFY YOUR WORDS OR GOALS. You are such an inspiration to us. And anyone who is not locked in a world of anger could see that your love for your children drips from every word you post. Your goals and purpose are noble. I am so sorry that anyone out there could make you doubt yourself, or your importance to people like me.

    I hope you can put this behind you soon, and know that 99.9% of the people who read your blog see the purity of your thoughts. Even people like me who weren’t lucky enough to meet you in person!

  9. There’s one thing I know: if this commenter had offered constructive criticism, you would have felt nothing but genuine appreciation. You’re always looking for new ways to understand and better grasp these issues.

    The problem is that it was not constructive. It was weird…oddly phrased…spiteful. She leapt around, making totally disconnected points. (for example: she was unhappy that you had criticized a quilt. i mean, come on! there are some seriously ugly quilts in the world!)

    When it comes to the language of autism…how we refer to it, what sort of distinctions we make: the most experienced, highly-educated experts in the world are clueless about this one. We are many years away from having a generally agreed upon language for the spectrum, how the various traits relate, differ. If the word “autism” is vague, that’s not your fault. That’s just where we are right now with the issue. And you know what? That fact is obvious. Her point on this is strange, incoherent. It’s precisely through talking…communication…that we grow and develop a standardized vocabulary for this. The mindset that, “You’re banned from discussing autism unless you’ve received approval from those with more serious issues”…that’s how communication stops…fractures. That’s precisely what will prevent any sort of meaningful cross-pollination of ideas.

    Not that anything I say or you say will matter to people like the commenter. She’s petty; throwing stones; had no intention of engaging in dialog.

    She can, however, prove me wrong. That would be nice.

    Commenter? Hello? Up for a quilt debate?

  10. Ah Jess. Oh Jess. I am so sorry that this comment was directed at you. I have been chewing (since we’re on the doggie theme) on this comment since 5.30 am this morning. Just like I have been chewing on the whole dinner experience.. and I’ll be chewing on it all for a while to come.

    That comment you got from Jenny spoke directly to a comment I had left on your ‘I can’t believe this is happening’ post. That the reason I have not been getting to gatherings of this nature, why I’ve been essentially avoiding them is because of the anger and envy that I have had directed at me so many times. The ‘why is your child doing so well, why considering all the issues he has struggled with and continues the struggle with, why is he making as much progress as he is. What made him so special?’

    And all I can say to that is “I don’t know. And I realize every single day that when it comes to the ‘autism’ lottery, I ended up with a pretty good number. And I am thankful for that. BUT THAT DOESN’T MAKE THE STRUGGLES MY CHILD IS FACING LESS THAN YOURS. THEY’RE DIFFERENT. BUT JUST LIKE IT IS HARD FOR YOUR CHILD TO BE HIM/HER, IT IS HARD FOR MY CHILD TO BE HIM. And I shouldn’t have to defend the fact that he has made as much progress as he did.”

    [I apologize for shouting]

    Jess, I don’t know what it is. Having a child with autism brings out both the best and the worst in people. Jenny’s comment reflects what I consider the worst. That somehow, having a child (or more than one child) with a more severe case of autism gives a person the right to be more angry, more hurt, more disappointed than those of us that have “high(er) functioning kids”.

    It’s balooney. It’s a perverse twist on the ‘work vs. stay at home’ mommy war thing. “My kid is more autistic than yours, so I can be more angry and resentful than you. So I can complain more about how difficult my life is.’

    Jess, you are a bigger person than I am. For writing that you ‘get it and that the distinction makes sense.’ I have been struggling with this anger/envy; high functioning vs. low functining thing for 5 years now and it still does not make sense to me. My friends have kids that range from one end of the spectrum to the other, and the underlying themes and struggles are the same!!! Just because one ‘flavor of autism’ allows for a child to talk and the other doesn’t, doesn’t mean that the battles parents have to fight for proper education, social integration, proper medical care, etc. are any different.

    [I apologize for leaving such a long comment.. I really should move this over to my own blog to ‘step on my soapbox’ there..]

    Bottom line – it is because of commenters like this that I will never become an “autism advocate” or an “autism awareness activist.” Advocate for my kids? Awareness for my kids’ particular struggles? Advocate for my friends’ kids (if they need me in that capacity)? Help them, support them, join in battle with them? Absolutely. But not for the larger masses – I use my blog to put out there what my thoughts are on things, and then visitors can take it or leave it. And that’s as far as it’s gonna go.

    Jess, I don’t know you very well, but what I can say is that opening your heart, your home, the lives of your beautiful two girls to that whole gang of us took some serious ‘balls’. I don’t know if I could do the same thing. Blogging about stuff is one thing, commenting on other people’s blogs is another. Opening myself up like that, letting other people see the real me? Not so much.

    While I was away, a friend posted the following. It’s an old Cherokee adage. I find it ‘strangely’ appropriate.

    “One evening an old Cherokee told his grandson about a battle that goes on inside people.

    “My son,” he said, “the battle is between two wolves inside us all.

    One is evil. It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority and ego.”

    “The other is good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith.”

    The grandson thought about it for a minute and then asked his grandfather, “Which wolf wins?”

    The old Cherokee simply replied, “The one you feed.”

    It is pretty clear from Jenny’s comments which wolf she chose to feed. And that’s her choice. Just like it is your choice Jess, to decide which wolf you want to feed. And I think I know which one it’ll be.

    Peace sister, peace.

  11. Please remember that YOU are the one touching peoples lives all around the world, not even just your own country. Of course you can’t know every-one, even in just your neck of the woods.

    I think the anger this woman feels is being directed at you because you are a visable target. You have put yourself “out there” and that means people can take your words and twist them. However, those of us who have found you, read your words as you write them, in the spirit they are written. I personally would like to thank you for the insight you have given me on this blog and the kind and enlightening words you have written to me privately by way of email. There is a little girl, here in England, who now has a far better educated and understanding teacher because of you. And that is the most important thing isn’t it? The community that we all belong to – mostly mothers supporting each other and the occasional outsider, like me, who needs the insight. THAT is what is important. Your meeting this weekend was about that community, not fund raising or awareness building and it wouldn’t have taken much reading of your blog to have understood that.

    Remain strong. Believe in what you are doing, both personally for your beautiful family and publicaly for your cause and do not let the people who are hurt and lash out, rock you.

  12. No time to read the other comments right now, so forgive me if I’m being redundant.

    It is important that we hear your voice and that you stay true to who you are. The joys and challenges we all face are not meant to be a competitive sport. You and I lead very different lives and have very different kids, but we are kindred spirits, aren’t we? That’s what this is all about.

  13. Loss of sleep over a comment. The last thing you needed to cap off this weekend’s festivities, good grief!

    On the other hand, had you NOT lost sleep in the crafting of your eloquent response, you would not be the person to whom so many people are responding so warmly just now.

    Thanks for being you. And I really really REALLY want to hear more stories of the party when you get enough sleep to tell ’em like they deserve to be told!

  14. For every one Jenny out there, there are hundreds (probably thousands) of us who know better. We somehow stumbled across your blog and found a place where your honesty and eloquence drew us in and gave us so much hope for our own children, and that’s an amazing gift to give to so many people all across the world.

    There was a lot of pain in that comment, but it was completely misdirected. I know I don’t really know you, just as much as anyone could from reading your blog, but it’s so easy to see how much you love your daughters and how much you do every single day to help them and so many others. You are an amazing advocate and an even more amazing mother (one look at Katie’s compassion and understanding at her age speaks volumes, not to mention all the progress Brooke continues to make with your love and support).

    Keep doing all that you’re doing, so many of us appreciate it more than you could ever know. Best wishes and love!

  15. You are genuine to the core. As beautiful and heartfelt as your writing on this blog is, your *actions* and your heart have always moved and inspired me more than any words. I find it ironic that the person who works so tirelessly for all children (and families affected) by autism would be the one attacked.
    From the deeper end of the pool, I say THANK YOU with all my heart.

    Shake this off, girl. Be unapologetic, uncensored, beautiful and brave. Rhema and I need your voice.

  16. I believe the woman who wrote the angry post is coming at it from a different perspective. While I do not have a child who has autism, I did experience autism upclose when a coworker of mine would bring her autistic son into the office. This young man was autistic, he could not hold a conversation with you, he would “act out” wildly, verbally and physically, et al. He was never abusive to us, but I did find out later that she was considering putting him a residential treatment program because her and her husband could not physically handle him anymore. It tore her heart.

    Autism is a serious disability. And I speak broadly here. And I am no way saying that anyone who contributes to this blog falls into this category. But to discount the serverity (all our kids are the same pool, so to speak) of some children with a more serious form of autism as opposed to those with Asperger’s Syndrome (as one example) is to do a disserve to those, like my coworker, who had to really, really, really struggle each day with her son.

    Petra: In regards to feeding the anger wolf, comments done in CAPS are generally considered shouting and not appropriate. You apologized. OK. How about not doing it all? You have to start somewhere, right? It is like you smacking someone upside the head and then saying “oops, I am sorry that I hit you.” Better not to do it at all.

    Jess’s response, while eloquent and touching, did not answer the women’s question: why did you not invite the woman to the event? Do you think maybe she would like a night away to relax and de-stress with the rest of the group? And you did not answer her statement about the quilt? If you indeed made this comment, then I would agree that it is meanspirited and an apology is in order. It makes no difference if the quilt is ugly. And there is certainly no reason to “dis” it on a blog. It is a gift and should be treated as such.

  17. M- you rock! You were able to put into words what I was thinking!

    Linda/Lori P- I’ve seen “the talk” and the “actions”. She walks the walk… (M- so sorry I had to use a cliché here, but I figured one must speak the language of the listener)

  18. i think that when one becomes a public person, this sort of thing is bound to happen. and it just sucks when it does no matter how much you know it’s not about you. it’s a shaking, heart pounding in the ear, red hot face feeling when you open your blog door and are greeting by the sting of misunderstanding when connection love community and understanding is what you are all about.

    there is no real responding to this other than an honest attempt to clarify the event which you did very eloquently. don’t leak your energy on anything more. re-route it to where it serves you, your family, and your entire community, online and in person. that’s the energy that emanates, gathering strength and creating meaningful change. the other is only a circle, round and round, and you don’t need to second guess nor explain or justify anything, my dear! you’re a goddess!!!

    this woman is clearly struggling with lots of hurt. that’s what’s underneath what she wrote; that’s what she was saying. and it wasn’t because of anything you did or said or didn’t so or didn’t say.

    sending xxx

  19. Jess? You have nothing to apologize for.

    Lori P? I KNOW which wolf I choose to feed… And as to smacking somebody upside the head and THEN apologizing? That’s called progress in my house; progress that took MANY years to achieve.

  20. I rarely come out from lurking. Rarely is most likely an understatement. Ever since Ju introduced me to you (and your blog) in August of 08, I am forever changed. You are truly a good person, deep down to the core. You make this world and my world a better place. I could never do what you do, because I am still vulnerable. Only two and a half years into this journey, I’m still open and raw. But you, you are confidant. I strive to be more like you. Honestly, though, it just doesnt fit my personality. I leave the moving, the ahaking, the educating, and the advocating to you and others just like you. Keep up the good work and thanks for doing my part too!

  21. I’ve never commented here before but when I read that comment the other night, my heart sank for you.

    So, delurking to say: You owe no one an apology.

    You, like every autism mom, are doing the best you can for your child and your family. That your experience could be “worse” is irrelevant. Our family swims in even shallower water than you do and let me tell you — it’s still cold, murky, and enough to drown in.

    Keep on writing. And swimming.

  22. Oh, I am so delurking for this one. Thanks first,to mama mara, as usual, for making me wet myself.

    And Jess, I am new to your blog, but I have found it because almost all my favorite autism mamas’ blogs mention Jess.

    There will always be people who misunderstand, and people who are just plain truly ignorant. Thank you for what you have done, and what you will do, please don’t change. Please continue.

    So glad you had a spectacular evening to lift you up and fortify you against the unenlightened, unwarranted judgment that was waiting for you.

  23. “As for the quilt – really? Point taken. Writing about in the way that I did was less than gracious. But I didn’t respond to it because I thought it was rendered ridiculously insignificant by the other issues and accusations in the comment.”

    Thank you Jess, for the acknowledgement. Yet is this an apology? Hmm. A bit backhanded, don’t you think? I do not see the word “I’m sorry” anywhere. You admit you were less than gracious. If so, why can’t you say the words?

    Not to belabor the point (and I really don’t want to beat you up, really!), but your words sound, well, angry. Speaking in general, when one is controlled by anger, it clouds one’s thinking. Anger is destructive, for you and those you love (and I speak from personal experience). You may not agree with this woman but she may have a valid point. You may not like it because she does not “jive” with your beliefs, but one can always learn something from another point of view. Not to be able or willing to do this is to be an ideologue (which is not a good thing to be).

    And do you actually think that making a hurtful comment and then thinking it was “ridiculously insignificant” to respond to the woman was calling you to task for it, well, insignificant? I think you might want to think about that for a bit.

    In reading these blog’s comments, I just get a whole lot of anger at this woman. Now, one can speak about “healing” and fighting off the “anger wolf” and one can stand on your soapbox and feel that you are the only person in the world who has troubles. Ok. But that gives no one the right to be mean or spiteful to another human being (whether it is your neighbor, friend, child, husband, fill in the blank). Period. And in reality, talk is cheap. It is always a person’s actions that count.

    And my dears, life is not fair. Nowhere is it written life is fair. To expect it to be as such is to be deluded. We all have our troubles, some more than others, and we all should treat other with respect. One should examine one’s actions always.
    Nuff said.

  24. “I KNOW which wolf I choose to feed… And as to smacking somebody upside the head and THEN apologizing? That’s called progress in my house; progress that took MANY years to achieve.”

    And all I say to you, Petra, how is that behavior working for you and those in your household? Truthfully?

    Compassion goes further than a smacking, trust me. You might not see it or believe it now, but maybe one day you will.

  25. “Speaking in general, when one is controlled by anger, it clouds one’s thinking.”

    I’ve seen the Karate Kid also. That Mr. Miyagi knows what he’s talking about.

    “And my dears, life is not fair.”

    You have a very pretentious way of speaking. And my sincere hope is that you’ll respond to this with a pedantic phrase relating to clouded thinking and the nature of life.

    However…the pedantic style isn’t exactly what it seems. “One should examine one’s actions always,” you write. Cliche after cliche…you’re enjoying the lecture mode because it’s a great way to get under someone’s skin. It’s a debating trick. If you look at the issue under discussion, most of what you’re saying contributes nothing. It’s just passive-aggressive cliches. Which again, you already know.

    At least the first negative woman seemed genuinely upset. You’re just having a little sport here. Caution, grasshopper. Pettiness makes the heart grow colder (or some other nonsense…I’ll leave the meaningless phrases to you).

    One other point: you refer to other commenters as angry. What would be wrong with that? I’m angry. Feels perfectly natural and right. I’m glad I’m angry. Jess gives a lot of us a genuine sense of hope and understanding in relation to these issues. When bitter commenters shoot cheap little arrows at her…yes. Anger may very well happen. Human nature. Personally? I keep both wolves fed.

  26. Where is all this coming from? I don’t understand. If people are not moved by this blog, why come here and taint it for those of us who are

  27. Oh comment 24 is a real heart breaker for me because I was clinging on to the hope that the “Nuff said” in comment 23 was the truth with respect to the commentary from LindaP.

  28. “so sorry I had to use a cliché here”

    Yours are based on personal observations. That’s a good thing.

    Linda’s are based on lame, Americanized martial-arts films from the 1980’s. That’s a bad thing.

  29. In my favorite movie, Moonstruck, the big dysfunctional family is sitting around the breakfast table after a particularly emotionally-wrought, awkward scene, followed by an uncomfortable moment of silence as they wait for yet another tense interaction to take place. Out of nowhere, the old Italian grandpa looks up from his oatmeal and says, “Someone tell a joke.”


    Q: How many teen boys with autism does it take to screw in a lightbulb?
    A: *Snort* You said screw *heh heh hehhehheheh heh heh*.

  30. to all of you who have offered your support (and humor!), please know how much it means to me. i am deeply touched by your generous and loving words. particularly to those of you who typically choose to read rather than write ~ to step forward in this environment is not an easy thing to do. i thank you.

    there is so much more that connects us than divides us. i am incredibly grateful to have you all in my life.

  31. Jess
    I couldn’t believe my eyes when I read your posting last night. As a passive yet addicted reader of your wonderful blog it has been abundantly clear to me from the beginning that you are nothing but a loving, dedicated mother to 2 wonderful girls, you have a kind heart (look at all you’ve done for many, many others) and you’ve been an amazing rock of support, solice, understanding and comfort for many families with kids like ours – irrespective of how affected each child is. Autism – in whatever form it comes – affects every family – emotionally, physically, mentally – the magnitude of its impact is clearly influenced by how severely affected a child is, but it doesn’t lessen the challenges all families face. It’s baffling how someone could have come to the conclusions that they did, but I concur with all of the previous posts – please don’t let this get to you! We need you!

  32. Wow. I don’t have a child with autism, nor do I even have a child. However, your blog and your writing and your stories teach me, make me reflect, and offer hope, honesty, and integrity. I am stunned at the mean spirit in the comment–and awed by your gracious reply.
    I know it still hurts.
    And it is important to have your hurt.(god knows, I would)
    But the words have no power over you–your power, your fierce mother love, your hilarious sense of humour, your integrity, your willingness to offer your vulnerablity, your brokeness and your wholeness come from within.
    And that is the Jess we all know–in the blogosphere and in real time.
    You are beautiful. You are love.
    Don’t forget that.
    We won’t!
    holding you in my thoughts….

  33. It’s unfortunately that some people thrive by lashing out at others. That woman has a lot more problems than your position on autism. You handled it all very gracefully though. Bravo!

  34. Wow! So sorry you received this. If I know anything about you it is that you are a smart, strong, authentic and caring woman and mother. Miss you and love you! xo Ali

  35. I just want to post in support of all of those of you who have come out to affirm your love and respect for all that my cousin Jess says AND does. So many of you have posted on the theme of feeling as though you know Jess, even if you don’t, and I just want to say that you’re spot on – all of you. She is 100% love in everything she does. And I know. I’m lucky enough to be her cousin.
    I’m also an English teacher, so I know all too well how thoroughly “facts” can be distorted by perspective. The few recent posts written by those whose experiences have clearly predisposed them to be blind to what all of us know to be truth should never threaten the wonderful community of trust, support and love that you’ve built. You are a remarkable group of warm, welcoming women (and men! I think I count two who post? But I’m sure there are others lurking!), and I am moved by how open your community is to anyone who can “see” fit to find his or her way in.
    I hope that is what you all take away from this – not the attack fueled by pain and misunderstanding, but your collective and unwavering message of empathy, support and hope.

  36. It is not the critic who counts, not the man who points out how the strong man stumbled, or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena; whose face is marred by the dust and sweat and blood; who strives valiantly; who errs and comes short again and again…who knows the great enthusiasms, the great devotions and spends himself in a worthy course; who at the best knows in the end the triumph of high achievement, and who, at worst, if he fails, at least fails while daring greatly; so that his place shall never be with those cold and timid souls who know neither victory nor defeat. –Theodore Roosevelt

    You should be proud of everything you have said and written. For all of our kids sakes, please keep talking and please keep writing. Oh, and one more quote (my personal favorite,)

    “Just keep swimming!” — Dory friend to Marlin and Nemo

    Rebecca Jackson

  37. So, after 2 1/2 years, countless hours with the chicas, and 2 trips with the “fam”, I’m absolutely convinced that you unselfishly pour your heart into everything you do, especially when it comes to the girls.

    Granted, not every autistic child has such an amazingly well-spoken mother, or MacGyver for a dad, or an awesome older sister who is amazingly photogenic, or the coolest babysitter ever…sorry had to throw it in there. But, as someone whose life and family have been touched by autism multiple times, I can only say that I am thankful that you give as much time and energy to the cause as you do. For anyyone who cares about someone with autism, it’s just an added bonus that you happen to be really good at it.

    And, since I don’t know if I’ve ever said it (and what better time than in the wake of negativity) Thank You Jess.

    Oh, and go Katie!

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