comment policy

*

My greatest hope is that the discourse on this blog and its accompanying Facebook page can serve as examples of environments in which compassion, understanding and mutual respect are paramount.

That said, I publish nearly all comments, but there are rare exceptions.

I have long been frustrated and deeply saddened by the chasms in the autism community, not to mention the broader, just plain-old human community. I will not allow diary’s comment section to become a megaphone for the anger that serves to keep us divided.

I will not abide personal attacks, either on me or my readers. While I actively welcome constructive disagreement and respectful discourse, this is not a forum for unproductive anger, particularly that which is directed at one another.

While I am happy to respect anonymity, please note that I also do not publish comments without a name (or consistent pseudonym) and a valid e-mail address.

From the bottom of my heart, I thank you – not just for sharing in our family’s journey, but for joining the conversation. And in so doing, respecting each other, supporting one another, and finding ways to bridge the space between us.

Edited to add: Diary and its accompanying Facebook page mean the world to me. The people who gather here to laugh together and cry together and learn and fight and breathe together, to celebrate and mourn and pray together, have become my family. I will do everything in my power to keep this space safe for them, for all of us. I therefore have a “zero tolerance for intolerance” policy. Neither hate nor bigotry are welcome here. Ever. I have a “ban user” button, and as much as I hate to use it, I will engage it freely in order to protect this place. This is my home. I will not abide hate in my home.

Thank you for being here and sharing in this incredible journey.

Jess

75 thoughts on “comment policy

  1. I am so sorry it was necessary in such a forum to have to say something like this! Your blog has been a source of strength for many…try not to get too down about a few people who miss the point.

  2. I am always surprised at the depths of peoples anger towards other families dealing with autism on message boards! I respect the fact that people disagree but so much time is wasted on negative, why bother?

  3. I am with ruh roh…
    and know that I love you all, and feel so grateful that you let me in to share the journey a little with you….xoxo

  4. It’s nice to see a site with so many positive attitudes and comments. I have a 17 y/o with a dual diagnosis of Down Syndrome/Autism. He is so precious…as long as he’s happy , I am happy. Now I also have a 21 y/o son who I believe strongly has ben misdianosed for A LONG TIME. He has been labled with ODD,PTSD,DEPRESSION,OCD…too many to remember! He has all the hallmarks of Aspergers but will not have anything to do with that diagnosis so I don’t battle with him.(Other professionals have agred with me) He has made some great strides in the past couple of years and hopefully will be starting college next year but in his words “I have to ready” Mean while he keeps himself busy with his art (he wants to major in animation). It has been a rough 32 years ..I have four other children but the rewards are what remain. Gail

  5. As a teacher of students with autism there are so many things I need to understand about my students and parents. Currently, I have a student who is struggling with behavior in school and the parents feel sure the school is to blame for the issue. If you could help me in any way I would be so indebted. My little guy tantrums when any demands are placed on him that he does not wish to comply with causing disruptions in learning for the classroom.
    He is smart and engaging, but missing so many things because of behavior. The parents are loving and very supportive but in denial about the extent of his behavior. He is at risk of being suspended from school and they finally realize we must do something to help this child. He has been diagnosed autistic, sees a psychologist, is medicated (prozac and risperdone), has hyperlexia but school is a battleground. The parents report the behavior at home is just as bad. Any advice to me as his teacher would be helpful. Also, I am an itinerant teacher who travels to seven other schools so I am not with him all day. He is in a general education kindergarten with about 19 others staffed with a teacher and aide. He does not receive any other special ed services other than me which is once/week for 45 minutes. Thank you for your blog and the invaluable insight you have provided me into the workings of the family with such a special child.

    • Kathy,

      This little boy is very lucky to have someone seeking information on his behalf. Unfortunately, I think it would be really irresponsible of me to dispense advice knowing nothing about him or his situation. It sounds as though he desperately needs far more services – beginning with an inclusion specialist or case manager working with a BCBA (a board certified behavior analyst) who can work to create an appropriate program for him. So many of our kids tantrum when they don’t have another way to communicate distress. It’s vital to create structure and predictability for our kids – visual schedules telling them what to expect can dramatically ease the challenge of transitioning from one activity to another and help our kids understand what’s expected of them. It sounds like the best thing you can do is to alert both his parents and the special ed administrators that the child desperately needs far more support in the classroom than he’s getting. Again, on behalf of all of our families, I thank you for trying to help and wish you all the best as you work to serve this child appropriately.

  6. Thank you for this…in all the best of ways…I have worn the cloak and it too is hung…and now only joy…and work….and joy!

  7. Like you, we get beautiful, candid pictures of my daughter. Getting somebody in the frame with her is tougher, but not totally impossible – but it’s ALWAYS candid and sort of “blink and you miss it”. (she’s also not a lap kid, which sort of makes it harder) The only photo of all three of us in the frame together occurred before she was old enough to object – about 5 months old – she’s now 3. My MIL is constantly trying, at parties and group events (another 2 issues in and of themselves) to get her to participate in said photos…it doesn’t happen and we don’t force it. I would love to find a photographer, who didn’t cost an arm and a leg, to just take a couple of shots of the three of us.

  8. My name is Amy and I have a son that was recently diagnosed with Autism with Developmental Delay. It has been an everyday battle of ups and downs and the one constant in my life was my job and there support with bringing Christopher out of the shadows. Christopher is doing incredible, I wish I could say that about the job. Unfortuneatly I was informed yesterday that my job as the Assistant to the President/CEO was over. That Iwas moving to the front desk of an association to answer phones from 9-5pm Monday thru Friday. My boss was always so supportive when we received the diagnosis this past March- I was told do whatever you need to do for Christopher. We did. He is now in numerous therapies 5 times per week begining at 8am most days. I informed him of the schedule and he was “fine” with it. I was informed yesterday that I need to report to work everyday at 9am- which means I need to leave the house by no later than 7:40am. In turn, means missing therapies. Me and my husband share the responsibilities of Christopher’s therapy schedule and schooling together as a team. He is the “bread winner” in our family. Is there any laws out there that can help me with being able to arrive at work late? I could understand that if there was a reason for me not to be able to complete my work – but there is no work load. There has to be something out there…. we don’t have the typical situation with our child… any help would be greatly appreciated. There has been many comments that he has said that I have a special child and I should consider being a stay aty home mom…

  9. Hi Jess, I’ve been reading your blog for a while now to write in today. I reread your Welcome to the Club today, and you know what? Turns out you were right, I’m not wearing that cloak anymore. It must be hanging in my closet today, and it feels fabulous!
    Melanie

  10. I have a son PDD-NOS. i read you and MOM-NOS frequently. I thought you both would be interested in this blog entry. I live north of New Orleans and have tried to attend parades with my whole family. My PDD son could care less about the parades :). Thanks for reading and I hope you enjoy the comments to the blog as much as I did.

    http://nolafemmes.com/2012/02/23/litupparade/

  11. That was beautiful. I also think that people who work with special needs children should also get a thank you! I worked for a special needs group home in CO with 10 kids and worked about 90 hours in 6 days for 5yrs. It wasn’t always roses and I got beat up everyday. You name it its been done to me even a broken nose. They taught me patiance; over coming small obstucles is a big deal; you can act silly as you want and they laugh. I can go on and on… They were my family. When I tucked them into bed and they give you a hug
    that’s when I said to myself I can make it thoug another day. Then told them I will see you tomorrow!

  12. Hi, I really enjoy your blog. I wanted to let you know about a research project I am conducting. I am a neuroscientist but also the Mom of a son with ASD. We are trying to find biomarkers that can help facilitate ASD diagnosis. Here is the link to our project. I hope that you will be interested.

    Thanks so much,

    Alisa

  13. I noticed a like on a status off your Facebook page , I continued to read and read , smiling to myself at achievements such as the switch from the Hershey bar to the lollipop, but also felt sadness for your little girls struggle and your families ! But wow what a lady you are , it’s our job as parents to do our best ,you are excelling this ! so from a mum in England keep blogging :)
    Regards
    Alex

  14. With everything going on in your world right now, this is going to sound silly. But I’m going to share it with you anyway! I don’t even know if this is the correct way to message you. If it’s not, I apologize. Anyway, I was in Target this morning and I saw an entire shelf of “Dora the Explorer” tissues. I immediately thought of you and should let you know they were there. Ya know…just in case someone in your household likes Dora. Here’s hoping y’alls day gets better!

  15. Hello, I have been following your posts for awhile and have a question you might know something about….Have you ever used “Autism on the Seas” while on a cruise vacation? I have a high functioning child with Asperger’s. Socially immature but cognitively typical but advanced in Math/Science. I don’t know if their services would really be any added benefit to us.

    • I’m not familiar with them. I’d suggest posting the question on Diary’s Community Support Page – hopefully others can help.

  16. Hi Jess…. I read your blog everyday. I love the way you write……and I have to let you know…I thought of you today….

    Today I ran into a store to buy one thing and left my 16 year old son in the car. As I was at the register my son text me that someone hit my car. Ugh I left my item at the register and ran out into the rain to see what happened.

    She was a very nice woman and apologized over and over. My son was fine and my car was bruised. But I needed to call the police to have it written up on a report.

    The woman was still pleasant but stated 2 of her children had autism. and she had one with her and she had to pick up the other one at therapy. Right away I thought of you and Brooke! My mind raced ..what should I do? Do I let her leave? I wondered how is her child in the car? Her child will need her..but i need her to talk to the police.
    I told her to wait in the car with her child while we wait for the police.
    Which was only minutes.

    I don’t know why but I had to let you know this…the way you write you educate people like me who does not have a child with autism. I wanted her child in the car to be ok with an unfortunate situation going on in a parking lot in the rain. I wanted her child at therapy not to get upset because their mom would be late picking them up. I just wanted them both to be ok.

    Jane

  17. Hi there,
    I’ve been a reader of your blog for a while and just saw a beautiful Ted Talk that reminded me of you and your unconditional love for your children. I hope you are able to watch it, or even post it here to share with your many followers. http://www.ted.com/talks/andrew_solomon_love_no_matter_what.html

    I finished my undergraduate degree in Early Childhood Special Ed and will be working in the field of Early Intervention. I am looking forward to working with families like yours and appreciate your insight into how difficult and overwhelming those first few years can be as a parent when you recieve a diagnosis for your child. I really enjoy reading your blog, you are a great advocate!

  18. I love this blog! I find it helps me to be a better parent, and hopefully more kind to people around me. I have a question – my son will be participating in this: http://web.uvic.ca/~letsface/letsfaceit/?q=node/30. He’s only 6 so I’m pretty sure he doesn’t understand anything about autism at this point. What words do I use to explain autism to him? I want him to have an idea about what’s behind the research, but I don’t want to give him a vocabulary that’s offensive or demeaning in any way. I’d appreciate any advice you have! Thanks!

    • kathryn, i’d suggest leaving your question on the community resource page (the link is at the top right of the blog). folks are wonderful about offering advice / suggestions. in the meantime, here’s stephen shore’s approach, which i think is brilliantly simple and direct ..

      1. Talk about the child’s particular characteristics. Cite strengths first and then talk about challenges.

      2. Line up strengths with challenges – identify those that can be used to offset each other.

      3. Non-judgementally compare their set of characteristics with other people. Include luminaries that feature prominently in history or popular culture. Newton, Einstein .. you know the drill.

      4. Explain that the particular set of characteristics have a name and that there are others who share it.

  19. I began to follow you via Facebook, and I’m not even sure how. I’m in Wyoming which from your posts you are no where near me. However, I think what you do is amazing and the strength you carry and the message you spread can only be seen as a blessing. Which I’m sure you hear often. I was curious if through your experience or those you may have had a take on you have an opinion on whether vaccinations lead to autism. Perhaps you’ve seen or have not that it is in the news that Jenny McCarthy will take over on the view. And there is a lot of controversy because she believes vaccinations led to her child being diagnosed with autism. And on the other side it can be extremely dangerous if children don’t receive certain vaccinations. Have you ever wrote about this issue or have any thoughts? I hope to hear from you!

    Thank you for all you do. :).

  20. Hello Jess- I am so grateful to have found your blog and look so forward to your latest entries each time I log onto FB. I am curious to ask you about your thoughts regarding Eustacia Cutler’s piece in The Daily Beast regarding Autistic men and child pornography… (I would’ve asked you about it privately if I could have figured out how but as embarassing as it is, I am stuck in the 80’s-okay maybe 90’s-technologically speaking despite my best efforts to improve my skills!)
    Would you be comfortable sharing your reaction/thoughts about it? I just keep wondering what you think about it as I process my own personal reaction/thoughts. I have my opinion and am in no way looking for validation or to pick a bone of contention by asking you. I have a deep respect for your thought process and life experience and am genuinely curious to hear what you make of it.
    Thanks so much.

    • oh dear god. i haven’t read the piece and i’m not so sure i want to. and by not so sure, i mean i really really don’t. can i just hide under my blanket fort for a while?

  21. Haha, permission granted to hide in your blanket fort! I gotta tell you, it’s a whopper. I saw the article posted by Mama Be Good to FB yesterday, read it and was speechless, well not really but almost!

    May there be chocolate in your blanket fort! ;)

      • I tried to reply earlier but I think it got lost-I warned you about my technological challenges!
        I think Emily Willingham nailed it and so did you in your post today. As always, thank you for speaking from your heart, especially in this case. I think it was important for you to do so, our community so benefits from your voice-one of warts and all honesty, intelligence, strength, candor, and compassion. It sounds dramatic but I feel wounded by that dark, disturbing, and shameful mess of an article, especially because of WHO wrote it. I have seen some ugly and angry responses to the article and I thank you for being authentic and compassionate in your response.

    • sleeping (er .. not) was a big issue for us for a time. we used melatonin with a lot of success until suddenly brooke ADAMANTLY didn’t want to take it anymore. we’d read about the possibility of nightmares on it, and given her sudden overwhelmingly negative reaction to it, we thought perhaps that was what was going on, so we took her lead and discontinued it. although she has trouble falling asleep sometimes now, she gets there eventually on her own, so we haven’t had to revisit the conversation yet (knock on wood.)

  22. I don’t know how I stumbled upon your Facebook page; some underlying force directed me to you. I also am a mom of an autistic son. My Nickolas is 5 beautiful years old. I live the same struggles as you and have celebrated some of the same triumphs. Your page helps me every day. I watch and follow and hope that Nickolas will shine and blossom like your daughter. After reading all your posts, it gives me hope. He is my angel and along with my 3 other children, I wouldn’t change one thing about our family. He has taught us all patience, humility and the ability to celebrate the simplest of things. (Like taking a lick of an ice cream that has a sprinkle on it!).
    So in my round about way I want to thank you for this blog. You are helping so many of us that feel as though no one gets it.
    You and I have many of the same thoughts ( but you have the gift of putting it on paper).
    Thank you again!
    Darlene Baker
    Cape Cod, ma

  23. Hi Jess

    My 4 year old has recently been diagnosed. I’m not “out” yet (whatever that means) but the last few months have been the scariest, sad, confusing and uncertain of my life. I just want you to know that reading and following you is helping me. A lot.

    • I’m so glad. If you haven’t yet read Welcome to the Club or D Day, please do. They’re both in Diary’s sidebar. Much love as you begin the journey.

  24. I was just given the link to your ‘Welcome to the Club and D day’. Wonderful. My youngest isn’t dx’ed as autistic, but I think she has autistic features…….these go along with her chromosome abnormalities—which can be so tough at times—just for the not knowing aspect. I am an older mom with three other children at home. I dearly appreciate that you’ve hit the nail on the head in terms of the sorrow and pain of an initial diagnosis and trying to put it into perspective. Your blog entries were so ‘spot on’ I literally wept when reading them. *You* get it and I thank you for reaching out your hand to let us know that. Thank you, and looking forward to reading more of your entries…..”Linny”

  25. Hi Jess,
    I wasn’t quite sure where else to ask this but I wanted your opinion on a topic. I respect you so much as a Mom and I adore your blog. I have an eight year old son on the spectrum and he and Brooke are so similar.
    My question to you is how do you feel about Autism Awareness Day at school? We live in a tiny, tiny town where everyone knows everyone. The teachers know my son, they know who he is and he is accepted by his peers for the most part. I am sure people know my son is autistic, but I don’t find it necessary to have an Autism Awareness Day at the school because there are maybe a handful of students in the school who are on the spectrum and they (the teachers and administration) are calling out their differences and putting a label on these children. My son has enough challenges in his life – he doesn’t need his peers pointing them out to him. He needs acceptance, friendship, love. I was opposed to it last year when they wanted a big hoopla (kids creating puzzle pieces in the classroom, talking about autism in the classroom, having an event in the gymnasium (ummm, sensory overload anyone??) etc). I asked why they couldn’t have a ‘difference’ day and how everyone is different and the kids need to accept ALL differences, not just autism. To me, its a very ‘old fashioned’ way of thinking these days. We need acceptance of all differences, not just autism.
    Am I being too sensitive? By the way, the school did not mention to the parents of the kids on the spectrum that they were doing this – no email, no note, nothing. Maybe I was the only parent they didn’t contact because I was opposed to it last year and the director of special ed wanted to get her way this year.
    Just needed to bend an ear of someone who may understand my feelings.
    Thank you so much for sharing your journey with the rest of the world. I look forward to your postings every day.

  26. I am scared to death. I am writing here because I feel I will find a safe place of understanding. You are so generous with your joys, fears and frustrations. Thank you. I am scared because tomorrow I meet our new IEP team. I don’t have the current one whipped into shape yet. I am battle weary and here we go again; new people, new landscape, and new hope (I hope). But mostly it’s freaking high school. Please pray, chant, burn incense, whatever it takes to get you to your One Who Hears. Thank you

  27. Hi, Jess!
    I’m looking for an older post that talks about how you spoke with Brooke’s class about autism. I feel compelled to do the same for my daughter’s class (my son has autism). I’ve spoken to a class at our local college, but not kids… other than my niece and nephews. I’m hoping to copy off of you and put my own twist on it… cuz I do that a lot. You see, you write FAR better than I can express… but I’m learning and getting better every day. Can you direct me where to find your older post?
    Thank you!!

  28. I have been hoping that one day someone with some following would write about the things that tend to divide the autism community. Honestly I think you’re the one. What do I mean by the things that divide us? (Not that you would need to ask). We have so many subgroups that our message about who we are as a community becomes confused and garbled. Here’s my list:
    -vaccine people
    -environmental pollutants people
    -diet as treatment people
    -TACA crowd, they’re looking for a “cure”
    -genetics people (I’m here)
    -Non verbal people often looked upon as “low functioning”
    -high functioning people that don’t generally want to be lumped in with the general population of people on the spectrum and use the term high functioning as a way to set them apart from other people with autism.
    -the person first people who are offended by being referred to as autistic.
    -the “autistics” that wear the label proudly.
    -and finally the Neurodiversity people.

    I hope in the future that all people on the spectrum and their families can come together in a more unified way
    Sincerely,
    Kristy Emory
    Kristyemory@yahoo.com

  29. I have recently started following your FB page and am enjoying your stories. My nephew is an 18 year old young man with autism who stole my heart the day he was born. He is quickly rising in fame in the autism world and I wanted to share two resources with you. The first is my sister’s blog. She started it as CJ was approaching his 18th birthday and it has become quite a resource for parents of children with autism who are approaching adulthood. Her most recent post has gone viral, as it describes the special friendship between my nephew and the #3 pick in the NFL draft. The second is a program at the University of Central Florida where individuals with special needs can communicate with avatars in a unique way. The video was used at a recent university conference and spotlights my nephew.

    blog: http://autismmovesout.org/bortles-oviedo-little-league-charity-challenger-autism/

    TeachLive: https://www.youtube.com/watch?v=QnTYQw8nCW8&feature=youtu.be

  30. Your right, with two kiddos on the spectrum and it knowingly being 1 in 50- Brooke & parents are not alone!
    Thank you for your blog!

  31. Hi Jess,
    I enjoy following your Facebook page and the journey that autism has taken Brooke and your beautiful family on. My daughter and I are on that same journey. I see a lot of similarities between Brooke and my Maggie Rose. My reason for this email is to share with you a resource our family is finding to be incredibly positive. You may have heard of Skills for Living in Norwell. They hold many social groups based on kids interest and some by age. The groups are based upon the principles of social thinking. Each group is supervised by professionals trained in special education. They are there to help the kids work through any social problem that may arise…. In real time, as it’s happening. I love this place and my daughter does too! It’s bright and fun and effective. We live in Braintree so a trip to norwell is nothing, not sure how far you live from there but I 100% recommend it. I think they are definitely worth checking out! Have a great day!

    http://www.skills4living.net

    Regards, Stephanie

  32. I want to start by sayin thank you and brook for sharing your story with the world thank you for takin the time out of you day and thank you for all the inspiring words you have shared. I just started reading you blog but you and brook have taught me so much. She really is an amazing special little girl and your truly an inspiration to all mothers.

  33. Thank you everyone!!!! Friends and family – I cant thank you enough for helping out with this survey! I know many of you forwarded it on to your friends and colleagues, and as you can see from the email below from my sister, you had a profound impact on my nephew “I”I cant thank you enough for the support, and you all definitely made a difference in Ian’s life!

    Hi everyone,
    I don’t belong to Facebook or have access to such a wonderful network of friends, nor does “I”, so I don’t know how to thank the almost 2000 (!!!!!!) people who took the time to fill out the survey. Final number – 1958 – before I” closed it and began processing the answers.
    I wish you could have seen Ian when he told me how many people had responded. Those of you who know him will appreciate how special and heartwarming it is to get his quiet smile and a chuckle when he is happy. Well he was more than happy, he was overcome. He was bouncing in the car and grinning from ear to ear. He said that his professor was “shocked into silence” when he saw how many responses “I”had!
    I told him that his family had rallied for him and that people all over the world had pitched in to help him. It showed how much his family loved him and wanted to help. And he was glowing with happiness.
    You guys are the best. I don’t think there are words to tell you how much this meant to him and me. I wish I could give you all a big group hug.
    There are tears of joy in Houston,
    Love, love, love you all!!! M

  34. Hello!

    Thank you for your notes… as a mom of a girl on the spectrum I find a lot of insight on the words of other parents and autistic adults. I was noticing that you have some links to Autism Speaks… some are a couple of years ago. I had the feeling that your attitude is of acceptance and respect to the autistic community and your daughter, so it’s a bit puzzling to find those links & other comments here.

    Thanks!

  35. Hi Jess, I have been reading for a couple of months now and love your blog! It’s so good to hear someone else going through the same challenges as I face.

    I have an eight and ten year old both with high functioning autism, (me too!) and it is just the three of us.

    My eldest really struggles to find the words or even the actions to self regulate her emotions. I noticed that broke is managing this really well, and I was wondering if you could tell me how you helped her with this. For example was it speech therapy or Occupational therapy? Or was it something else that you worked on with her that helped her to connect and articulate?
    I am thinking in particular of your chocolate cake blog.

    I hope you don’t mind me asking :-)

    • EClare, I posted an answer to a similar query on diarey’s FB page a week or so ago. I’ll try to find it later tonight and copy it here, but if you have time first, it’s there somewhere :)

  36. Hi Jess,
    I have been reading diary for some months now and althought I don’t have autism or any direct experience with it I still find reading you story and the story of your family inspiring and engaging. I can still empathise and understand so many of the struggles that we go through as humans to communicate and to be understood – regardless of our neurological state – and I wanted to say thank you :)

    I have therefore nominated you for a blogger award; you can read all about it over at my blog: http://walkthewheel.wordpress.com/2014/07/10/a-very-inspiring-blogger/

    Please don’t feel obliged to continue it if you don’t want to but also know that my nomination was made out of a great respect for your writing and your sharing and not out of boredom or a desire to frustrate already busy people!
    Very best wishes to you and your family.
    Keli x

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