**
Photo by Connerton Photography
**
Hi, I’m Jess Wilson. My husband, Luau and I have two beautiful daughters, Katie, 20, and Brooke, 18.
I will be forever grateful to my girls for unwittingly breaking my insular little world wide open. For allowing me — nay, forcing me — to see the beauty of difference, the light and color and startling depth of dimension in the full range of the human spectrum. For giving me the gift of a life well-lived thanks to the variety and the quality of the people in it. I owe them more than I can ever begin to repay.
Above all, I am proud beyond my wildest dreams of my girls and I thank whatever powers may rule the universe every day for blessing me beyond measure with this incredible life.
** My name is is really Jess Wilson. Theirs are pseudonyms.
a diary of a mom 
I just stumbled upon your blog from the Autism Speaks online newsletter we receive. I feel like I’ve met a kindred spirit–I’m a mom of a beautiful 9 yr. old girl, we’re in Texas!
I have lived through so much of what you write about and your darling daughter sounds so similar to mine, we are entering 4th grade on Monday and every day life is a joy with my angel by my side. I am a free lance writer, I spend many hours a day writing about other people, not myself. And many days it is hard for me to come up with the words that describe how I feel. It is so calming for me to read words such as yours and know that there are others out there who feel the same as I do. God bless you and your family. I understand you, I appreciate finding other moms who “get it”. From a friend in Texas—–Lindsey Mc
I also arrived here today after following links from the Autism Speaks newsletter.
I love your blog. I’ve been getting little work done all morning because of the crying, but I still love it. Thanks for describing so eloquently what it’s like. That was a great speech, too!
I too discovered your website from the Autism Speaks newsletter, which, in some weird way, I look forward to every week. I have to tell you, I feel like I know you already. I read many of your blogs already, and can feel both your pain and your pride. My daughter Emily, age 5, was diagnosed with Asperger’s at age 3. Since then, I have given up my career as nurse practitioner to devote myself to floortime, speech therapy, sensory OT, playdates, and biomedical interventions. While she has made miraculous improvements, the pain of watching her struggle with things that her brother does effortlessly, is always there.
I will continue to do everything in my power to help her, and now I feel like I have a friend in the struggle.Thank you for that.
Denise
I responded somewhere else but can’t find my response, which shows how computer literate I am). I loved your sppeech. I wish you lived near my grandson who sounds so much like your daughter. I get so upset when he tries so hard to be friendly but the children just ignore him. He says hi to kids passing by and they look at him like he has two heads. He even walked up to a girl trying out a bike in Walmart and said “nice bike” and she just ignored him. Maybe we can change the world one child at a time. Thanks for the wonderful words in your speech.
Sheila – Glenview, Illinois
I, too, just found your blog after reading your speech on Autism Speaks and share the sentiments of the other “blog commentors”. My 13 year old daughter was just diagnosed last year with PDD and I just wanted you to know that your description of what it’s like to live in her world from a sensory perspective will definitely bring more understanding to the uninformed world. My sons have not always understood their sister the way your older daughter understands her sister, but my middle son came through with flying colors when he had the opportunity to dispel some myths that his classmates had when having a discussion about autism last week. You are right…we all need to keep talking…and I’m happy to say that you have a kindred spirit in that regard!
Greetings!
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Just call me Bebeth from canada. I was really touch reading your speech( published in their own words) that i cried hard because i experienced all those feelings that you’ve described. I am also a mom of 3, w/ an 18 yrs. old girl,a 14 yrs old boy then 10 years old lovely & fashionable sweet little girl name Elvie – who has autism. True enough that having a child w/ autism makes you everything you don’t expect yourself to be. Yeah. There are times that we act not only as the therapist of all but also a good actor or comedian. My eldest daughter is into Psychology & is aiming to pursue speech & laguange therapy hoping to understand more & help her sister getting out of her shell. My son is a good actor ( making her laugh & forget her tantrums )in times when elvie is in a bad mood. When we go to a trip, a gathering ,a mass in church & etc.we each has a role to do in case our sweet girl behaves sourly. I found solace & comfort reading your speech. I’m not alone now. Lastly, I ask your permission if i can print a copy of it so I give it to the ELvie’s teacher which I believe doesn’t care & know much of how it feels to have an autistic child. Thank you & God Bless!
Dear Jess,
Merry Christmas to you, Katie, Brooke and Luau. My son, Mitchell was in preschool with Brooke and I’ve been wanting to reach out to you but have just discovered today how to post a comment.
Beacause I read your blog regularly, Brooke and your family are never far from my mind and I wish you all continued health and happiness in the new year ahead.
You are an amazing mom and writer. Your words never fail to inspire, touch and amaze me.
Warmest regards,
Tracy Carroll
Hi Jess,
Thanks to the autism speaks newsletter I just found your blog and heard your speech on you tube. I am blown away by how powerful, inspiring and positive a speaker and writer you are. I just wrote you an email, but it was returned to me. Apparently, I no longer have the correct email address for you! If you feel like it send it to me and I’ll resend the email. Please send my love to Katie and Brooke. I loved seeing their photos.I loved the ring around the rosie ones! The girls look as beautiful and wonderful as I remember them. I hope to see you all again soon.
Much Love,
Marjory
Hi Jess, I enjoy reading your entries everyday and it brings me smile (sometimes tears) from time to time. My son is also on the spectrum and had just been recently diagnosed, so you can imagine how we’re spinning right now while trying to get him as much help as we can. Anyway, Brooke is a lovely girl. Did you put her on GF/CF diet or biomedical treatment? I hope my questions are not offensive. We are researching options for our son. If we can get him to where Brooke is now, we’ll be overjoyed. I just want to know what treatments or therapies you’re doing for her.
Thanks and keep on writing. 🙂
Hi jess, i can hardly write in english but i read very well.I am a hispanic mom of two kids with autism ,imagine for a moment if for you ladies is hard how i am feeling.
I only made it to the 9 grade at school my economic situation is a mess .Your stories seem to different to what i live with my kids they do not show emotions my 3 years old never stops he breaks everything, i have lost my job and everything i dont have enough eyes and hands to take care of them. i go from heaven to hell . It’s a big responsability teaching two angels how to live here on earth when i don’t know how to live myself
I feel so lost and so lonely .
If you would be kind enough to answer to my email because i sure i would never find this page again.I moved from Utah
San Jose California a month ago and I like to find some activities for my kids and some kind of support por parents with kids with autism.
if you or anybody could help with some ideas
please!!
Blanca:
please contact me….I think I can help you.
God bless you,
Heather
Jess, I have been a long time lurker, and am inspired daily by your blog. Being the mom to 5 daughters, (the youngest has a dx of asd) I truly feel the more rare “girls with asd connection.” My daughter is 3 and a half, and I am inspired by Brooke’s accomplishments. I was wondering if you could e mail me to let me know what inverventions you have used, and what you have found to be most helpful. Keep up the good work, and never stop writing! you are truly gifted!!
Hi Jess,
Outside of comments, I can’t find a way to contact you. I am an intern at an occupational and speech therapy clinic in Sacramento, California. I’d like to share with you a new book that the co-owner of the clinic has written. Would you please contact me about this?
Thank you,
Matt Robinson
matt@stepstherapyinc.com
Wow, trying to hold back the tears while reading entries from “Diary of a Mom” was so difficult. Then, after reading Russ’ story about scraping the garage windows for his son who has PDD-NOS, brought such a connection that I just let the tears go for a bit. My 5-yr old son was also diagnosed with PDD-NOS when he was 3. He is our precious little jewel and he gives everyone so much unconditional love. The drs. used to always ask, “is he always this happy?” And he was. In fact, it was almost scary how happy he always seemed. Sounds strange I suppose.
I have days where I feel my husband and I are working against our son’s differences trying to make him more “normal” in comparison to other children. For example, he sucks/flickers his tongue in and out several times throughout the day. We think it’s just a calming, relaxing thing he does. He isn’t embarrassed by it; he doesn’t try to hide it. But we know this action draws attention to himself and kids will ultimately tease him as he gets older. Our daycare, school teachers, and my family have all tried to intervene. We’ve tried chewy toys around his neck, the school gives him gum to chew in class, we’ve given him gentle reminders and we’ve given him stern reminders. It all seems futile. He continues to do it just the same.
On the other hand, there are days we just let him be exactly the way he is…no worries about tomorrow. It’s like a day (well, actually only part of a day – the whole day would be too long)where you just let everything go…no correcting, no intervening, no modeling, no nothing…just letting him beat to his own drummer for that moment in time. Those are some of the best moments of pure joy on our end as well as his. But then reality hits (usually when another child or adult enters the picture) and you know you’re not living in a bubble and you have to teach your child what is appropriate and what’s not. For example, we were swimming at a hotel pool a few weeks back and our son had the pool to himself. It was one of those “pure bliss” moments; he was just laughing so much for no apparent reason other than just being happy. Then other kids came in and though our son was ever so excited to have company, my heart sank knowing something was ultimately going to go wrong. Sure enough, he tried to hug everyone in the water and then go for a ride on an older boy’s back. Needless to say, the kids weren’t too fond of that. I don’t blame them. But at that moment, the “peaceful, joyful bliss of just letting him be who he is”, was over. I now had to put on my “correcting hat”. Rejection by other children only seems to make our son try harder to get their attention, which only makes me have to intervene and correct more often to the point of utter frustation. I feel like he’s only getting in trouble, so why bother even being there? In the end, I can identify with Russ’ words that you just want to find a silver lining to finish off the up and down day. Like if one kid would purposely throw my son the ball in the water and make him laugh, then I could tell him how great that was … and then I would throw a towel around him and say “let’s go tell your brother and sister about it!”…then he would be eager to tell and the transition of getting out of the pool would be easier … the other children wouldn’t be bothered anymore … and all would be well for everyone.
Hi Lori Gay, I had a pet doberman that used to drive me absolutely crazy! It would strain at the lead and dance around and embarass me in public. Then one day I read that things that happen are neutral. They don’t mean anything unless I cause them to. So I started to choose how to react, or not, to things and Gazelle and I became great mates. She still behaved exactly the same way, but I stopped worrying about it. My son has been classified as Aspergers, and he does his own sort of stuff! My job, as I saw it, was to enable him to get on in the world, but always remain himself. Because there is greatness in the unique way he views the world. Some days I could just SCREAM!!! Most days, however, it is simply marvellous!! I wish you the very best for it and I can see you are doing some fantastic work with your boy. Love to you all, Hugh
Lori, are you sure you’re not talking about my child?
I’ve seen that pool scenario play out a bunch of times. And each one is difficult.
Also, wanted to share our experiences with a similar oral behavior. We had a difficult stretch with inappropriate mouthing of … well, everything … in school this year. He would chew on shirt collars, pencils, pretty much anything he could get his mouth on. Then at some point, he stopped swallowing his saliva and instead would blot it out on his shirt. It got so bad that we were sending him to school with a change of clothes every day. We tried a lot of stuff, including sensory diets, gum, starburst, “chewelry” — which made things much worse, but eventually the school behavioral therapist and one that we had brought in to observe figured out the pattern. Gum during transitions helped, but the behavior really started to abate when his aide made it his responsibility to count how many times he did it in a day. He would get a reward for reaching a target number. The results were remarkable. The behavior ebbed over a period of a few weeks and then disappeared altogether.
Good luck and thanks for your comments!
WOW! Fantastic that persistence and insight helped solve the problem!
Hello Jess. I have just stumbled upon your blog and am in tears. My nephew is autistic (and failure to thrive, and has ended up with tardive dyskinesia). He’s seen amazing improvement with cognitive reasoning, finger stemming gone, skin allergies gone, and rages diminishing by taking a nutritional product called Reliv. It could be beneficial for Brooke.
God’s blessings to your family,
Heather Forrester
Hi my wife and I found your site very interesting and thought we would share with you a patch that we have been using on our autistic daughter Hannah. There called Aura Patches and are not a chemical patches. It’s made an unbelievable difference in her attention span and behavior. Check them out @ http://www.internapure.com/Blog/2009/07/09/aura-patch-autism-protocol/ keep up the good work.
Darren N.
Atlanta, Ga.
Hi there,
I have been visiting your blog for a few months now and it has changed me. I just wanted to let you know that you continue to inspire me as a mum and as a mother of a child on the spectrum (I have 2 sons, my oldest is James and is nearly 8, my youngest is Thomas who is 5 years and 8 months old and was diagnosed just over 2 years ago) and as a human being. I live in Australia and inclusion is something I have found has to come from parents. We can’t hope that others will step up. I thank you for your posts and wanted to share that I started my own blog today, I hope you have 2 minutes to visit it sometime.
Happy holidays,
Amy
I just found your blog and am excited to have it to read. I am suspiscous that one of my daughters may have some kind of PDD. Not ready yet to say the “A” Spectrum words. I haven’t talked to her teacher yet, because teacher doesn’t feel she needs any evaluations. Today I was notified of by another daughter’s teacher that she needs evaluation. My world is spinning. Teacher hasn’t been specific about what for. Not focussing and taking too long to do her work is all I get. Teacher is contacting diagnostician today. I started a blog to document all of this and a place people can leave advice. http://thatsmydaughter.wordpress.com
Did I say I’m overwhelemed? And I really don’t know WHAT to do. Hoping some of your readers (and you too!) can help out.
I am the father of an autistic son and I also have a blog writing about my experiences and dedicated a facebook page called Autism Insight to my son in trying to help him and share our experiences with others through my blog and post relevant information about autism.
I came upon your blog and started to read your most current entry and I know what you are saying as we have been there. You have 2 beautiful girls and you are a wonderful mother. I would most certainly like to subscribe to your blog and read more about it. Thank you for sharing it with us.
Edward D. Iannielli III
(father of an 11 year old autistic son)
thanks so much, edward .. all the best to you and your son!
Jess,
I’ve stumbled upon your blog recently, and have spent all morning reading your previous posts. Every day you post something that touches me.
My two-and-a-half year old daughter has been diagnosed as autistic, and I relate to much of your subject matter. She has sensory and anxiety issues as well, and Brooke’s iPod may just be the best idea I’ve ever come across. I have an old mini that I will be outfitting with Chloe’s music to see if it helps when we’re in overwhelming situations.
As it is now, we always walk into a situation with the understanding that we may have to leave at a moment’s notice. This is okay with us. She’s our kid, and she is who she is. But wouldn’t it be wonderful to have a way for her to avoid the meltdowns all together? As a mommy, the last thing I want is to see my child so overloaded that she simply can’t function. When she shuts down it breaks my heart.
Thank you for sharing your stories and ideas.
AmyLyn Reardon
http://haddickreardon.blogspot.com
Hi, I’m contacting you on behalf of Autisable.com, a blogging site dedicated to raising awareness and encouraging discussion about the challenges of autism, aspergers and ASD. We are interested in syndicating your blog on Autisable.com. Please contact joel@autisable.com for more information if you are interested in adding your blog to Autisable and reaching even more people with your story. Thank you!
I thought you might like this…
I saw this great youtube clip from the autism treatement center of America spoofing the mac vs pc ads. They are doing aba vs the son rise program. I have a friend who is using the son rise program with his 6 yr old son and is having awesome results. I thought the clip was funny and thought I would share it with you.
I hope you enjoy it.
If you get a chance check out the atca webpage at http://www.autismtreatmentcenter.org
Maybe if you like their web page you can link to it.
smiles from KK
I really enjoyed that video clip you posted. I used to work for a family who has a now 10 year old son. He was diagnosed with autism at the age of three and has come such a long way with the help of the son-rise program. I am truly convinced that son-rise is a great help for the children and parents (families, carers…).
Jess, I was referred to this blog by a friend, and I’m glad I found it. I was particularly touched by your “welcome to the club” post. This is what should be handed out to parents at the developmental pediatrician’s office upon receiving an autism diagnosis….
I have two sons on the spectrum, three and almost seven. I have recently finished a manuscript about them and our lives together, and have a literary agent interested in signing me if I can show traffic on my blog. I am hoping to get the manuscript published both to help open doors for them, and also to garner contributions for POAC (Parents Of Autistic Children), a wonderful organization located in Brick, New Jersey.
If you have the opportunity to visit my site at
autismmommytherapist.wordpress.com/
I would be very grateful, and if you feel your readership would like it, I’d appreciate the publicity as well. Either way, I am glad I found yours, and will be contributing.
Thanks for your time. Take care, your girls are fortunate to have you.
Kim McCafferty
Please notify me of subsequent comments and posts.
I was happy to discover your blog today. I was unable to find a contact link. I hope it’s OK that I’m contacting you through a public comment. I’ve developed an educational program for Windows called SpellQuizzer that helps children learn their spelling and vocabulary words without the battle that parents often have getting them to sit down and write them out while the parents dictate to them. The parent enters the child’s spelling words into the software making a sound recording of each word. Then the software helps the child practice his or her words. It really helped my children with their weekly spelling lists.
I would appreciate your reviewing SpellQuizzer in A Diary of a Mom. If you are interested in hosting a giveaway of a SpellQuizzer license I’d be happy to supply a free license to the winner. You can learn more about the program at http://www.SpellQuizzer.com. There’s a video demo you can watch at http://www.spellquizzer.com/SpellQuizzer-Demo.htm and a community site where SpellQuizzer users can share their spelling lists with one another (http://www.SpellQuizzer.com/Community). Finally, there’s a page targeted to homeschooling families at http://www.spellquizzer.com/spelling-software-for-homeschoolers.htm. I’d be happy to send you a complimentary license for the software. Please let me know if you are interested.
Thank you very much!
Dan Hite
TedCo Software
Dan@SpellQuizzer.com
Jess, I just have to say thank you. I am a single mother of a year old. He has been diagnosed with Aspergers, ADHD, Oppositional Defiant Disorder, Anxiety Disorder and three other borderline disorders. I found your site one night after an extremely difficult day. You have made me cry, smile and best of all you have shown me that I’m not alone. So, thank you for sharing your family and their lives with us.
Sorry – he’s 12.
Discovered your blog through the parent of a former student on Facebook. I have a wonderful 10 year old daughter with an autism spectrum disorder(along with anxiety issues and sensory issues) and a wonderful neurotypical 12 year old daughter (if there is anything typical about 12 year olds!) I have also taught students with various abilities/disabilities for nearly 30 years. I am enjoying your blog and the snippets you lovingly share about your life.
Hi Jess! I seem to have misplaced your email address. I was hoping to send you an update about my little boy. Talk to you soon?
I just read this and it cut to the core. I have a nine year old daughter he had autism and I have a 2 year old that I feel I don’t pay enough attention to…this has givin me hope that maybe I can spend time with BOTH of them alone, ty so much!
Hi Jess:
My name is Adam Behar and I was really blown away by the quality of your blog — you are a very skilled writer and storyteller. Your family’s life is filled with blessings and challenges, and you do a great job of capturing them both. Your daughters are precious — I loved when she tried to get out of going to school!
This month I launched a Facebook Blog entitled Autism Dad (most of my readers, interestingly enough, are women). I hope you take a moment to LIKE my blog and perhaps even share it with your readers. (A link follows). Many thanks for being in touch.
Adam Behar/Autism Dad, San Diego, CA
http://www.facebook.com/#!/pages/Autism-Dad/160327080653310
Hello Jess!
I’m not sure if you check this or not, but wasn’t sure how else to get a message to you. I have loved reading your blog! My daughter was diasnosed with autism in January and your blog has been a wonderful comfort. Your girls are beautiful and inspirational.
I have a quick question for you regarding Brooke’s iPod fascination. My daughter plugs her ears with her fingers constantly- sometimes it’s a noise issue, sometimes for no apparent reason. I wondered how you started the iPod with Brooke and what prompted you to try it?
Thank you for any answer. And, again, thank you for your wonderful and encouraging words.
Aimee
welcome, aimee! we tried the ipod as soon as we thought that she could handle wearing ear phones, which for her was about a year ago if i’m remembering right – maybe a little more.
she has always been very sensitive to sounds and it was very obvious that our biggest hurdle to restaurants and other public places was the noise level. as soon as we felt she’d be ready, we bought a pair of soft ear phones (the old style that cover the ears). we didn’t invest in anything fancy schmancy – we found a pair that worked for about $20 at radio shack. it’s been a godsend.
hope that helps!
Hi, just found your website. My daughter has a pretty significant case of SPD with Asperger’s tendancies but is too high functioning to be on the spectrum. would love to have you read her story and leave your thoughts. Love your blog!
Jennifer mom to 6 year old Jacquelyn
her story – http://babyminding.com/2010/10/25/the-special-needs-child-jacquelyns-story/
welcome! and thanks for sharing. i look forward to reading about your girl!
Jess, I wanted to take a moment and let you know how much your blogging means to me – words cannot really describe how I feel about you, but I feel the need to try!
I am a relatively new fan (some may say stalker) of yours, I found you about 2 months ago. I am not a big on posting or commenting, but the minute get on my laptop, I log into fb and find your latest post. Lucky for me, since I am in CO, you have usually posted something by that time. I have 2 boys, 7 and 9, the youngest has autism. Most of what you post I feel like you have taken from my life, and our experiences – just much more eloquently than I could manage!
SO, the whole point of this is to say thank you, Thank You, THANK YOU! I have never met you, and you have no idea who I am, but I feel like I have known you for years. I feel like we are living parallel lives, and you writing about Brooke and Katie makes me feel like we are not alone, and someone ACTUALLY understands and truly gets what we go through – because you do! I am sure I am not the only parent who feels like this about you, but I just had to let you know.
BTW, congrats on your Godspell experience – we had a similar experience last year at a Nuggets Basketball game (our equivalent). It’s a wonderful feeling to see your child truly enjoy something they love in a “normal” setting. Since Brooke loves music too, I thought I would share this with you. We recently signed our son up for a hip hop class through the Therapeutic Rec Center out here, and I was terrified of how he would handle the class, but he absolutely loved it. The teacher was amazing and so patient, so that helped a too. I was amazed at how much he enjoys learning the moves, plus he sings along with the songs and no one cares that he is off key or LOUD. My older son takes a class at the same time which is awesome and rare for them to be in the same place at the same time doing their own activity! I am not sure if there is something like that where you are, or if Brooke would enjoy it (I imagine Katie would), but we have had such a positive experience I though I would share.
Happy Thanksgiving to you and your family, I hope it is fabulous!
Danielle
Jess,
I wanted to share with you how moved I have been by your blog. I discovered your blog through Autism Speaks. Your words are honest and so touching. Thank you for sharing.
I have had two pieces that I have written published on the Autism Speaks blog and I have also just started my own blog about my journey with my son who has autism. My sister who is a photographer has taken pictures to marry with my writing. You can see it at http://www.cheairsgraves.com
Thank you again for your writing and for sharing your journey!
Hello. I came across your blog on facebook; a friend of mine that has a son with Autism posted and I read it. Then read some more and cried. I do not have a child with a disability but I know LOTS who do. I never really understood what a parent of a child with Autism goes through. I judged. I thought oh my God just ignore that or how can he be scared of a disney movie or why can’t you control him …..etc etc reading your blog gave me a lot of insight on what a parent really faces that has a child on the spectrum. thank you. I now have some understanding, as I can never fully really understand not going through it first hand.
Oh guru, I need your advice. I just got a long, raving comment on my blog and I don’t know if it’s worth responding to. My impulse is to write a whole post about how we have to fight against her kind of hatred, but idk how much digital ink I want to give her. You can read her rant (unrelated to my post) here (I chose to publish it to make her douchbaggery public): http://notanaffliction.blogspot.com/2010/03/most-offensive-thing-in-world.html
Hi-
I am a teacher who left my classroom in order to build more tools (based on research) to support children on the spectrum and then get those tools into the hands of teachers, therapists and professionals. (find us at http://www.SpectrumKeys.com)
My point in writing today is to tell you about an interesting experience I have had during the video modeling. The feedback from typically developing kids is so natural and instinctual in terms of what we teach kids w/ ASD and how well that translates into the natural world of childhood. I read a comment above from a grandmother who gets angry when other kids ignore her grandson’s attempts to say “hi”. I get her feeling, but wanted to throw out that it might be helpful to ask “why”. Maybe one of those other children can tell you what would be helpful skills to develop in your grandchild. They are so often NOT the ones we think they are!
Be Well
Pam
pam@SpectrumKeys.com
Hi Jess,
I work at Lee & Low Books, a multicultural children’s book publisher that’s releasing JAY & BEN this month, a board book for young readers with developmental and learning disabilities. If you are interested in receiving a review copy, please let me know.
I look forward to hearing from you!
Best,
Natalie
I just came upon this story on CNN and though of you and all the work that you do to help our children become accepted. Look at all the hard work this child is doing to get the word out.
http://www.cbsatlanta.com/news/27351193/detail.htmlfac
Wow. I feel like I’m home.
My 8 year old son… was just diagnosed with Asperger’s. There is SO much researching going on and so many questions… and sometimes I feel like no one has any answers…
I think your blog is going to be wonderful for me- thank you for sharing… I have a blog too… our journey so far…
Just… wow. Especially your letter to the president.
Let’s see if he so much as wears a blue tie this week… sigh.
Dear Jess,
My name is Ana Pineda, and I work for Cinema Libre Studio. We currently released our documentary film, Loving Lampposts: Living Autistic, on DVD and VOD platforms on March 29. Loving Lampposts takes a look at the two sides of the autism debate: the “recovery movement,” which views autism as a tragic epidemic brought on by environmental toxins or as a disease, and the “neurodiversity movement,” which argues that autism should be accepted as a variation in functioning rather than a mental disorder. Filmmaker Todd Drezner explores the world of autism after his own son’s diagnosis and comes to believe that acceptance is the better way.
Here at Cinema Libre Studio, we pride ourselves in producing and distributing social conscious movies that make positive impact and bring awareness to issues in order to make a difference. Loving Lampposts is a one of kind film that stands on its own, and I am writing to see if you would consider sharing the film within your network by posting something to your website, blog, or newsletter in the form of a review or announcement. A link to the press release follows my signature, as well as a link to Wired Magazine’s Steve Silberman’s touching review of the film. I am also including Todd Drezner’s Op-Ed in The Huffington Post. If you would need to see a copy of the film before endorsing, I’d be happy to send you one for reviewing purposes only.
If you would like to organize a public screening of the film, public performance rights for education or grassroots screenings are available. Details here: http://www.cinemalibrestore.com/edu/loving_lampposts.html.
We also have an affiliate program for Loving Lampposts which your organization may be interested in. By registering with our third party service provider Indieclix and placing a banner ad on your site, you can earn 12.5% through DVD sales. Further details found below:
http://cinemalibrestore.com/affiliateinfo.html
http://indieclix.magicrock.com/program/pftj0ZSW/237/
I look forward to hearing from your organization, and I hope we can establish this partnership. Thank you for your time, and I hope you have a pleasant day.
Sincerely,
Ana Pineda
Cinema Libre Studio
818.349.8822
http://www.cinemalibrestudio.com
ana@cinemalibrestudio.com
For more information and updates, please visit: http://www.cinemalibrestudio.com | Updates | Facebook | Twitter
P.S: Here is a direct link to our press release: http://www.prweb.com/releases/2011/03/prweb5146894.htm
Steve Silberman’s Review:
http://blogs.plos.org/neurotribes/2011/03/29/loving-lampposts-a-groundbreaking-documentary-about-autism-love-and-acceptance/
Todd Drezner Huffington Post:
http://www.huffingtonpost.com/todd-drezner/autism-the-most-popular-d_b_848332.html
Additional links can be found here:
http://www.lovinglamppostsmovie.com
Trailer:
High Res DVD Art:
Facebook:
http://www.facebook.com/LovingLampposts
Twitter:
http://twitter.com/lovinglampposts
Hi Jess,
I’ve been reading your blog for a while and absolutely love it. You’re so inspiring!
My husband is running a marathon in May here in Denver to raise money and awareness for the Autism Society of Colorado. H’s fundraising letter is posted on my blog:
http://mbamommy.wordpress.com/
I’d love it if you could help me spread the word?!
Thank you and please keep writing!
Rebecca
I wanted to share my new blog in which you have inspired me to write, it is http://jacobsasdchallenge.wordpress.com and I am doing my best to chronicle our family’s journey with my son Jacob. I hope that I can do as you have done for me and give someone hope and help with this blog. Thank you so much for all you do for the autism community.
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Jess,
I happened on your blog a few weeks ago and have been following your posts since then. You are a talented writer and give me something to think about everyday. When you asked readers to describe what Diary means to them, the reader who wrote ” I am not alone” described perfectly my thoughts as I read through your posts. I also have a daughter with ASD and Diary is the first connection i have to families with girls affected by ASD. It has been very comforting to connect with this community!
Thanks for everything you do!
Mary
Hi!
I followed a link on a friend’s FB page and after enjoying the post she linked to so much I started reading more, and noticed several references to Godspell. I just had to search and read all about your ‘Brooke’ and her fixation with the show, because I have a daughter with the same fixation! She’s neurotypical (thus far), but seems to be on very much the same wavelength as far as Godspell goes!
She spends a lot of time searching for Godspell videos on youtube, she performs ‘Turn Back O Man’ in full boa-ed regalia, draws all the characters, carries around a CD of the music (it’s also on her iPod, of course), and just the other day she suggested we contact Victor Garber to suggest that he run for office; she’s sure he’d be a great public official. I’m a little bit hesitant to show her the awesome Godspell dolls that now exist thanks to you (I’ve spent the past 5 Decembers making stuffed bears of varying sizes for Santa to bring), but I’m sure I can’t resist. Super awesome.
We were able to see a local High School production, twice, last month, and while ‘Brooke’ might not find it an acceptable change, Jesus was played by a girl, and it wasn’t a Superman shirt, it was Rosie The Riveter! I haven’t seen any clips show up on youtube, but maybe you all have!
I’ll be keeping up with you!
Tina
Jess,
I’m still trying to accept the twist and turns of my life that have brought me to your blog. I have been following you on FB as well. Thank you for your perspective. It is so good for my soul to hear how other moms are living day to day with Autism. Although every kid on the AS is different your blog reminds me that I’m not alone in my parenting experience. Keep writing and posting. You are such a wonderful resource for me and many others. Best to you and yours from me and mine,
Beth
Jess-
I started reading your blog about a month ago. I have truly enjoyed every post you have written. My son (4) was diagnosed with PDD-NOS about this time last year. As you know, our life has been completely turned upside down but we are staying positive and praising every baby step our little T makes.
I also have a daughter who is 7. My husband and I have realized that it is time to sit our daughter down and have the “autism talk” with her to help her better understand her brother and why we have to handle situations differently with him. I was wondering if you know of any webiste, literature,, or if you have any suggestions/advice that would be help us through this tough but necessary conversation.
I am hoping that my daughter can be as kind, loving, and protective as your Katie!
Thanks!
Nikki
Nikki,
Here are some ideas that may be helpful ..
Dr. Stephen Shore has a great framework for disclosure that can be easily adapted to either telling a child about themselves or telling others about the child.
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. Nonjudgementally compare their set of characteristics with other people. Include luminaries that feature prominently in history. Newton, Einstein, etc.
4. Explain that the particular set of characteristics when put together have a name.
The following is a link to a ‘book’ i wrote along w a wonderful preschool teacher to help ‘typical’ kindergartners understand their peers – (scroll down to the pictures to go straight to the book)
https://adiaryofamom.wordpress.com/2008/09/17/aut-viam-inveniam-aut-faciam/
Also, I wrote some time ago about a conversation my husband and i had with a neighbor whose daughter had refused to let my girl play with her, saying she was ‘too dumb’. The mom asked us to offer suggestions for talking to her kids. I share the post about that conversation because I think it helps to put the pieces together. It starts w Stephen’s framework and uses the ‘book’ as well.
https://adiaryofamom.wordpress.com/2009/11/19/one-conversation-at-a-time-part-2-or-technically-3/
there are also some great *real* books out there – i can’t recommend these personally, but worth a look:
i hope that helps!
J
Jess,
I know how busy your are and I know you do not have time to comment on everyone’s blogs, but I really need your support today. Please read Delightfully Different Life today and support us. It is for our girls!
Thanks in advance,
Sue
aka D. S. Walker
Hello,
I am the Community Relations Manager of Children’s Mercy Family Health Partners. We are a Medicaid managed care health plan owned by Children’s Mercy Hospitals and Clinics in Kansas City. We are a not-for-profit safety net health plan serving Kansas and Missouri whose goal is to help make our members healthy.
In order to do that, we have created two video channels on YouTube with health education videos targeting those with low health literacy. The channels are available at http://www.youtube.com/cmfhp1 and http://www.youtube.com/cmfhpspanish (Spanish language channel).
I would like to invite you to use any one of our videos on your blogs or websites.
We have just launched new videos providing education on autism featuring an interview with Dr. Farrell Weiers of the Family First Center for Autism and Child Development in North Kansas City, Missouri. The videos currently available under the “Autism” playlist are:
• What Is Autism
• Autism: What Is PDD?
• What Is Asperger’s?
• What Causes Autism
I am also working on producing more videos that will soon be added to the site.
My goal is to simply let you know about the videos so that you can inform those you serve about them.
Thank you and please let me know if you have any questions or concerns!
Sincerely,
Chris Beurman
Children’s Mercy Family Health Partners
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Hey Jess – not like you have time for such things, BUT… my book is finally out, and I would love to send you a review copy. As we discussed, Ben Has Autism, Ben Is Awesome is a picture book to help parents start discussing autism with their kids on the spectrum – also good for NT siblings and classmates. If you want a copy, email me your mailing address. Official page: http://jasonandnordic.com/turtle-books/featured-book-titles/
Hi Jess,
I wish I could find some words to help chip away at your Mountain of Overwhelmed. You’ve been fueling my mornings with your wonderful posts for about a year, and you’ve never sounded as in need of help as you do now. There was a time in the spring when you checked out from Diary for a bit… Did that help? Could you do that again?
At the end of the day, you’ll know what you need, and reaching out for professional help is a great next step.
Sometimes, when Mt. Overwhelmed gets in the way, you can’t see beautiful sunrises. And I have heard so many beautiful sunrises in your stories, that it seems like Mt Overwhelmed need some blasting material to just get out of the way so you can see the view. My blasting material is usually medication, friends, wine, time for me, and exercise. I hope you find your blasting material.
My husband has just left for 5 days (work related, not separation, ha) and I’ve turned to most of my blasting material. So far so good.
Wishing you peace Jess. You have blessings abound, but it reminds me that none of that matters when we can’t blast Mt Overwhelmed. Happy blasting…. Hugs.
Dear Jess,
My wife is an active reader of your site and loves your writing. Our oldest son, Elijah, was diagnosed with autism at the age 2 1/2, and to celebrate his fourth birthday, my wife, Melissa Riesenberg, put together a short video with some of her favorite photos and sayings/song lyrics that remind her of Elijah and the journey we are on. Please feel free to share this video with your other readers on December 6th, Elijah Riesenberg’s 4th birthday.
https://docs.google.com/leaf?id=0B832kJaWp1EKMTZlZmYwZDMtZWQ4Ni00YmNiLWJjY2YtOGE5MjYyMTUwMzc1&hl=en_US
this is beautiful, jeremy, thank you for sharing it and a very happy birthday to your sweet boy.
Hi Jess from Africa,
Just read this on an art blog and thought of you. Seemed like something you’d enjoy or post yourself.
http://creativethursday.typepad.com/my_weblog/2011/12/art-and-autism.html
Hi Jess,
I really enjoy following you on facebook and reading your blog. I loved your post the other night about the store clerk while shopping with your daughter. I wanted to share with you a song my husband and I wrote and video we created to raise autism awareness in honor of our son. You can watch it here: https://www.youtube.com/watch?v=13TXhkKWpJg or on my blog site: http://www.stevensonslifeinpieces.blogspot.com Hope you enjoy it!
melissa, this is absolutely beautiful – thank you for sharing your family!
Hi Jess,
I’m a writer, autism mom, and columnist for the Autism and Asperger’s Digest. I love your blog and am recommending it to newly-diagnosed famillies in my May column.: )
I’m not sure if you read this magazine, but I’m happy to send you a (free) copy each time it’s published (every 2 months) if you’d like. (Or I can just send you a pdf of my column, but there’s a lot of good stuff in the magazine as well including columns by Temple Grandin and Ellen Notbohm). Please email me at jamie_pacton@hotmail.com if you’d be interested. Thanks and keep up the good work on this amazing blog!
Thanks!
-Jamie
This is a great blog. I parent two boys who have Aspergers diagnosis and it’s interesting to see the differences, and similarities in parenting girls.
Thank you for your work! I also have a daughter on the spectrum (now 19 years old).
I wonder if you would be willing to share this call for stories from parents with children on the spectrum? A special issue of Narrative Inquiry in Bioethics is devoted to the stories of parents whose children are transitioning or have transitioned to adulthood. The details are available here http://www.press.jhu.edu/journals/narrative_inquiry_in_bioethics/KD_BM_Autism_NIB-Call_2-29-12.pdf and we will gladly accept proposals after February 29th.
I found your blog today and I can’t stop reading it. I also have two beautiful daughters about the same age as yours and my youngest is also on the spectrum. It’s amazing how similar our situations are. Thanks for reminding me we are never alone.
Welcome! And thank YOU for doing the same for me 😉
J
Out of curiosity, what state/county are you in that provides Aba in the school?
Haley, We are in Massachusetts.
I love you already … 12 year old daughter with Aspergers… She keeps us laughing and loving
Hi there,
You make it very difficult to email you personally and directly. I can understand why, your blog is very popular and you’d get a ton of email if you had it public. My name is CG. I’ve been following your blog for a couple of years now and have commented a time or two.
Your words captivate me in its honesty and rawness. I know of no other blog writer that can simultaneously discuss things on a micro and macro level so articulately. I am constantly inspired by what I read -about your beautiful daughters, the compassion, the energy, the awareness of how to do good in such young bodies. You offer a wide, clear window of what is happening in the world of autism, how families personal and not, are affected. It helps me to navigate my own world with a daughter, not too far from Brooke’s age, who is PDD-NOS -pretty soon to simply be just “autistic”.
It has been quite a journey for me and in the last couple of years I’ve finally become comfortable with it. But there is always something, something that looms over me because this is a big world in some ways and in that big world there is all sorts of things that want to derail what we’ve built for my daughter. Some things might come in the form of bullying, maybe other things come in the form of illness. But there is one thing currently on my mind and I’m not sure how to talk about it, or rather, how I will deal with it. I want to know your perspective on it, especially since Brooke is only a year or two older, I use your experience as a little guide for me, for what might be up ahead. So how can I email you my question because I’m not comfortable asking here?
cg
CG – thank you so much for your kind words. I can’t manage personal correspondence – I wish I could, but I’ve tried; and it’s just too much. The Community Support Page is a wonderful resource for questions. I’d encourage you to ask there. And if you feel uncomfortable with the visibility, feel free to use a pseudonym. I’ll make sure to accept it based on your IP address. No one but me will see any identifying information.
https://adiaryofamom.wordpress.com/about-2/community-support-page/
I wish I could offer more — hopefully this helps.
Warmly,
Jess
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Hi Jess, My friend just sent me a text telling me that she heard you speak at an EI conference and that we were so much alike in how we believe our daughter’s echolalia is much more than repeated words. It is their language and has become the language of our family. My blog is Borrowed Lines: dalisonwatt.wordpress.com
Keep her in your prayers. She is autistic and wandered away from a vacation home in California on Sunday.
http://www.lakeconews.com/index.php?option=com_content&view=article&id=31221:tuesday-search-turns-up-no-sign-of-missing-girl-new-resources-to-join-effort-wednesday&catid=1:latest&Itemid=197
Honestly, I’m slightly intimidated by your blog. It looks so very well put together and I like that you are an advocate, I would like to be, and kind of like the intimidation of your blog, getting into advocacy can be intimidating too. I am bipolar and much of the illness, as with autism, is misunderstood. I want to help, which is in part the reason why I began my blog.
But props to you for inspiring, I am inspired to do more in your footsteps. Maybe sometimes if feels like the mother you are being is not good enough, but I don’t know, maybe you were also perfectly picked out of a gazillion because you were perfect for the job. Bad things happen in this world because it is full of evil; but it also, and can even more so, be full of good. You make part of that good come to be. So, like I said, props to you (I don’t really know what that’s short for come to think of it, but hopefully you do).
Try to keep in mind, if you believe in this sort of thing, that the perfection is IN the imperfection. It’s showing up, it’s BEING there, and it’s doing everything to put good back into the world though sometimes it seems in the short run, good is not what’s being returned back to you. You are an inspiration. Thank you for blogging so I could fall upon it this morning ;0) It makes a difference to me.
Oh, honey, thank you So much for your kind words. Please, please, please don’t be intimidated, either by me or the concept of advocacy. To me, advocacy can be as complicated as making laws in Washington, or as simple as owning, honoring, and sharing your own story, thereby empowering others to do the same. That doesn’t take a pretty blog nor well constructed sentences, it simply takes the courage to tell the truth.
As far as my blog looking “put together”, well, I’ve been at this for 5 years now. Eventually you get the hang of it. 😉
Keep at it. It’s worth it; I promise.
Thank you ;0) I definitely will!
Firstly, I just want to say, thank you. Your writing inspires me to see things differently, my children – differently – better.
But I have a question, and you may not be able to answer it…but I’m going to ask it anyway:
How do you draw the line between ASD and just difficult behaviour? Or better yet: Does a line even need to be drawn? Do you, Jess, just always understand and are you always patient?
I ask because I fear I am f’ing it all up. My daughter has Asperger’s – and until she was diagnosed in Sept 2012 – I had no idea what AS was or that she might have anything but ADHD and a really challenging attitude. I have bought a million books on the subject and even seen the similarities in us and had myself diagnosed with high functioning AS. Yet – I still find myself unable to empathize with her needs when they do not seem as important as the task at hand (getting out the door to go to camp for instance). I get angry instead of calm and patient. And I see it all happening, but I can’t seem to change the outcome.
And so, what I need to know is: why can’t I just “get it” when it counts most? Why can’t I tell myself all the things I know to be true in that moment (she is dealing with transition, she has trouble in the mornings, she cannot be rushed, she needs understanding not impatience) – I feel like no matter how much I know about ASD’s I cannot implement that knowledge when it counts most. When I read that you just hugged Brooke that night you had gone out and she missed you – I had trouble “getting it”. It seems so useless to me to just sit and hug sometimes. That sounds awful – doesn’t it? That’s my own AS I guess that leaves me feeling like hugs are not that important. Of course there is also a mom inside me who knows that sometimes hugs are the only important thing.
Torn by the instinctual and loving mother that I am (who knows exactly how ‘good mothers’ act) and the AS individual with my own agenda and different – not typical – way of loving and showing love. Sigh.
Like I said, you may not be able to console me with “answers”. There very well may not be a rule book or instructions for this type of stuff…
In the meantime I will continue to read your blog and hope that my heart and mind collide in unison the way yours seem to always do.
I would like to grow up to be as great a mom as you. 🙂
Your faithful reader,
Deceivingly Normal.
oh man, there’s a lot here and this is some messy stuff. first, i’d recommend putting your question over on the community resource page to get other perspectives than mine. but here are some thoughts ..
we all have different needs. sometimes, within families, needs aren’t just different but clash at a given a moment, such as your need to get out the door clashing with your daughter’s need for more time. for us, the times that work the best are the ones in which we are able to create environments in which everyone’s needs are acommodated as much as possible. that means constantly looking ahead, foreseeing challenges and setting up situations that avoid them where we can, mitigate them where we can’t, and ease other challenges to allow for the energy to handle them when it’s the only option left (or we’re actually working on something).
in this example, it would mean getting up / starting the processs of getting ready to go earlier so that she has more time and you don’t need to fall into the pattern of being rushed which causes you both stress.
very often we find that once the stressful situation has been established, there’s not much we can do to bring it back – her anxiety goes up and so does everyone else’s – not helpful to or healthy for anyone.
ultimately, of course, the goal is to teach her to learn what makes her successful and what doesn’t and to create those environments for herself.
but in answer to your question about where ASD ends and behavior begins, no i really don’t differentiate. autism is how my kid is wired, so it’s a part of how she reacts to the world. does that mean that every challenging (or awesome) thing she does is because of (and only because of) autism? well, no, but it’s always a factor. for instance, yesterday i got a note home from her aide that she very purposefully went over and sat on her lap and passed gas into it, then cracked up. as funny as her aide might have found it (thank god, cause ewwww), farting into an adult’s lap at school is undoubtedly challenging behavior. so, was it because she’s autistic? well, yes and no. she did it because she loves to make people laugh and she thought it would be funny. does a ten year old kid typically understand that farting into a teacher’s lap isn’t okay? yes. does an autistic one who has significant challenges understanding social etiquette? no. so, did she do it *because* she’s autistic? no, she did it because she thought it was funny, but she wouldn’t have done it had she not been autistic.
so then the question becomes how to handle it. do we yell at her? absolutely not. because for my kid, yelling is terrifying. she has a lot of trouble processing big emotions from others and can take DAYS to get over someone yelling at her or even around her. so, FOR HER, yelling would be a very, very dramatic ‘punishment.’ but do we punish her at all for something like that? we didn’t. we taught her. because it was something that she didn’t know and needed to learn, not something that she knew and was willfully disregarding.
but there are boundaries. hitting, pinching, biting — never okay. but again, we try to find out what made her lash out and give her another way to express what she’s feeling rather than responding in anger. again, once she is faced with anger, she essentially gets so frazzled that she shuts down and learning stops.
so, yeah, we have to be really patient, and it’s hard. i take a lot of deep, slow breaths. i walk into another room and come back. i tag out with luau. we take the kids out separately or one at a time. but more than anything, we get better and better at creating environments that allow us to avoid clashing needs and life gets easier and easier to manage.
as for hugging — oh, honey, you can’t beat yourself up for acknowledging that your instincts are different than others’ (different not less, remember :)). if we’ve learned anything here together, it’s that there are a million and one ways to show love. hugs are one, but if that’s not your thing (or your kid’s), you still have a million more ways from which to choose.
i hope that somehing here is even remotely helpful. again, for different perspectives, head over to the community resource page!!
j
As a mum of a 21 year old daugter with Asperger’s Syndrome, I was drawn to your blog. Thank you for sharing your story here and for your insight. I also wanted to let you know that I have nominated you for The Versatile Blogger Award. The link for the rules is: http://sherrimatthewsblog.com/2013/08/15/a-flurry-of-awards-and-the-the-versatile-blogger-award-goes-to/
Congratulations and I hope you have a lovely day 🙂
Jess, you and your blog are such an inspiration. You’ve open my eyes to things I might not have thought about, or might have taken a long time to get to on my own. Thanks to you, I read “Loud Hands” and boy, was that a perpective shifter!
I’m the mom of a 6 year old Autistic boy. He has high communication / academic skills, but socially is pretty “quirky”. I want to be an advocate for him and for others as I learn more about functioning in the NT world with an Autistic child.
I am going to start blogging to get started on that advocacy, and would like permission to link to some of your posts, such as the “why I refer to Brooke as Autistic”, etc. Would that be OK? Do I need to ask permission of other blogs to post links? Thank you for your help with this, and thank you again for what you give to us as readers of your blog 🙂 Hugs to you and your family!
yay! love new blogs and SO glad you read Loud Hands. I wish we could make it mandatory 🙂 .. You are always welcome to link to anything here, as long as you are linking and not copying. Come back with a link when you gte started!
Can I borrow your comment policy? What would be the best way to “copy” it and give credit at the same time?
Do I need to ask permission of other bloggers to post their links on my page like you’ve done with the moms/dads/autistic bloggers?
I’m going to be walkinontheedge.wordpress.com (walking was taken LOL). Nothing there yet, but by this weekend I should have something up.
Thanks!
You can absolutely link to my comment policy; you just can’t copy it without running into copyright issues. But you’re welcome to link to it.
As for the blog roll, you do not need permission to link to anyone, or any of their posts. Links essentially direct readers to other people’s blogs or posts, and is typically very much appreciated by those who wrote them.
So, quick version – copying not okay, linking always okay ;).
Try not to laugh too hard at this, but when you answer to help me with this, I feel like I’m getting a nod from the Queen 🙂 LOL!
Lol. Sorry, but I just snorted. 😉
Good grief – “Trust” and “Got Milk” are so moving. I forwarded them to some people in my son’s team.
I have to ask, as a new blogger – is it normal to be inspired by someone else’s post to write your own post riffing off that? It feels a bit weird, if that makes sense… I feel almost LAZY because though the ideas in my post will be mine, the inspiration for it didn’t spring forth on it’s own, but from someone else’s thoughts. I know, Trust came from Milk, but as a newbie, maybe I’m just nervous 🙂
no, no and no! it’s a beautiful, fabulous, wondrous thing when we all meet here in this virtual living room (see the comment above (or below?) i was literally writing as you wrote this) and to riff off of each other’s ideas. it’s the whole point! go for it .. just come back and leave the link so we can read it.
YIKES – ok, here’s the “About” page. It’s all that’s up right now, cause I’m just finishing my lunch hour at work (LOL!), but I’d love any feedback 🙂
i … um .. dang, i think there’s something in my eye.
That’s what you get for putting stuff in MY eye all the time! LOL, sniff!
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Hi Jess – crazy blogger question – how do you balance between wanting to share your feelings, impressions, thoughts, etc., what your truth is for you, but avoid being preachy? I posted this:
– and it made me thing about that. Thanks for your help!
Thank you for sharing. It’s a wonderful post 😉
I struggle with a lot of things when I write, most saliently how much to share vs my family’s right to privacy. And yes, I struggle with sounding preachy when I feel strongly about a topic (as in my recent posts about disclosure).
I am extremely careful with words. Like you, I value them highly. I parse them a lot. Because I know that when I come across writing that is preachy (or worse, patronizing or scolding) I am apt to, well, stop reading.
So I make a point when trying to make an argument of always remembering that my readers may come at the topic from a very different perspective and may well have a very good argument of their own that is diametrically opposed to mine. If I start swinging a bat, there’s no chance of those people sticking around. If I shoulder it and reach out a hand, invite them in for tea and then calmly explain why I feel the way I do, we get a dialogue. And I learn something too.
😉
Whew! Thanks. That helps a lot. I know you’re super busy, but if you read anything on my blog that comes across as “batty”, let me know 🙂 You always find that balance (at least that I’ve seen) so you’re a parent-blogger role model for me 😉
Jess, you may find this article – http://www.spiegel.de/international/andrew-solomon-discusses-his-book-far-from-the-tree-a-926925-2.html – interesting.
Hi Jess,
I’m reaching out for support & hope you can steer me in the right direction. Our almost 7 year old autistic son is going through what I think is regression with separation anxiety. I’m not sure as we’ve not been in this arena before, but what my gut is telling me. It’s breaking my heart to see what he’s going through. Any resources or insight you could share would be greatly appreciated. Thank you so much! ~ Kristy
kristy, i’m so sorry to hear. this time of year (seasonal change, light change, shorter days, less exercise) can be brutal on our kids. i’d suggest leaving your query on the communuity support page so that others can weight in. hang in there .. j
will do, thanks!
Hey! I just wanted to thank you for continually encouraging me to be a mama bear advocate for my little boy! Youre a great example of how all parents should stand by their children regardless of circumstance!
This week I was faced with a horrible event. My son, Javen, who is 4, has Fragile X Syndrome and Autism. He can sometimes have his tough times, but his behaviors are a direct result of an unmet need and him being non- verbal. Our preschool is wonderful with him. He has his own para and an IEP that reflects his needs well.
However, his daycare is a different story. They have had him there since he was 3mo old. They never minded him when he was immobile and non verbal. Ever since he learned to walk and express his needs more, they have been trying to find ways to get rid of him. Apparently, this whole last month they have been setting him up to fail and sabotaged him in the worst way. While I thought they were watching him and caring for him they had set up a “behavior analysis chat” where they sat back & waited for him to fail so they could mark it down instead of helping him with his needs. We knew nothing about this chart. Also, Javen has a communication book he takes to and from school who’s sole purpose was to speak for him so he could tell me about his day. His para writes in it and tells us everything. Daycare took it upon themselves to photo copy the entire book , highlight all the “negative” comments (which were really just notes saying where he had to take a break from inclusion time with fellow peers and take a break in the hallway) & made a huge stack of “convincing evidence” that my baby was some sort of “monster” who couldn’t possibly stay in their daycare anymore.
The sad part about all this… aside from the obvious. .. this was MY workplace daycare. .. at a hospital daycare. A hospital that has a “program” for high school graduates with special needs to be interns and learn basic job skills. They love to brag about this program. Have also used my baby in a promotional video for their therapy department, & in this impromptu meeting never let me being my director or husband with me. Also. .. my Javen is only there from 12-3:30 & he sleeps from 12-2.
It was sick and sad. My organization abandoned him.
Anyway thank you for listening! Thank you for being an awesome mom; a voice for us moms who need to hear that roar when we feel like crumbling!
-Amber
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Thank you for your willingness to share your life and experiences. Your blog is the first I have ever come across that tells “it”, like life with our special children is. We have no support where we live, so coming across your blog is a God send. You are an inspiration.
God Bless,
Lisa
Dear Jess,
I am one of your biggest fans :). I love, love LOVE your blog. You are a huge inspiration to me — and oftentimes a breath of fresh air!
Please forgive this message! I’ve been trying to find an “email me” link on your blog/facebook page, and I couldn’t figure out how to do that, so I figured I would just send you a reply here and see if, at all interested, you could email me back
As a (much more amateur) writer [than yourself 🙂 ], I was honored when I was asked to review a product (QR ID patches) to help protect our ASD kiddos from wandering. After I finished the review [it’s “sticky posted” on my home page — “On losing my toddler in Tokyo”–, I’ll attach the link in a following reply so it won’t get “stuck” in your spam filter, which I’m sure gets easily clogged!!! :)] , I realized that this is something that would be really helpful for families visiting major theme parks, as our ASD kiddos get overstimulated, distracted and tend to wander. We live in Florida, so of course I thought of Disney, and I recalled that you have done numerous interviews with Disney. All that being said, I was wondering if you would consider reading my article, or looking at the QR ID program, and if it is something you also think might save lives, pass it along to your vast readership?
I wouldn’t do this if I wasn’t an ASD mommy worried about the 49% of our ASD kiddos that will wander at one point or another. 🙂 Again, forgive my imposition. I feel bad reaching out to you this way… I just couldn’t find a better way to send you a private message anywhere (if that was operator error, I am SOOOOOOOOOOOOO sorry. Under my brown hair dye is blond roots and sometimes…. sometimes they just show!!!)
Very kindly and respectfully,
Rachele ❤
PS: I'll include the links in the next post so this message doesn't wind up in your spam folder!
PPS: You are awesome. 🙂
“On Losing My Toddler in Tokyo: Moms, Dads, and Caregivers Everwhere you Need to Read This! New Program Helps Keep Loved Ones Safe!
Rachele, Thanks for reaching out and bringing it to my attention. It does sound like a good idea (though one open to abuse depending on circumstances) but sadly, I just don’t have the bandwidth to investigate and I just can’t in good consious endorse a product (or appear to endorse a product) that I simply don’t know enough about. Wandering is so terrifying and I’m very glad to see it being addressed in a number of different ways to help keep our kiddos safe. I”m sorry I don’t have a more satisfying response. Thanks again and all the best, Jess
Thanks for the response, Jess! Take care!!!
Hello
Found your blog through a friend’s fb post. To my knowledge, I don’t know anyone who has autism. I can’t begin to understand what it is like. However, your incredible, insightful posts, your out there love and faith and pride in your children, have had me blubbering for the last couple of hours, as I read post after eloquent post. If only the world could take your wisdom, garnered in the spectrum as it has been, and apply it liberally, humanity would be a different entity.
Thank you for sharing.
Hello, Jess,
I am a Disney-loving Spectrum mom that hosts a podcast about Disney travel for people with special-needs/disabilities and the people who love them! Would be thrilled to have you as a guest on the Special Mouse podcast to chat about autism, Disney and your DAS experience. Regards, Kathy Kelly
Kathy, Thanks so much for the invitation. Sadly, I have to decline as I just don’t have the bandwidth right now. Thanks for understanding. All the best, Jess
I’ve been reading your posts for quite sometime on Facebook. My daughter, age 4, has been diagnosed with SEVERE ADHD. However, finally, today, we are going for a 2nd opinion. I know, somewhere deep in my gut, that there is more going on. I relate so much to your posts, especially the really hard ones. I relate to everything you are saying..and can feel it all with you. I’m hoping that today, this new doc, will feel “right” in my gut, and I will feel confident about my daughter’s diagnosis. I suspect, we are on the spectrum somewhere. I need to spend sometime reading through your blog. I have questions. How young was Brooke when she was diagnosed? Do you medicate? How often do you see a doc? What types of docs do you see? Etc.
I just wanted to say thank you. Out of everyone, I feel like you “understand”, even though I don’t officially have a spectrum diagnosis….YET.
Margo, It’s all on the blog in great detail, but here are some quick answers:
She was 3 when diagnosed. She is on medication for anxiety (in addition to adaptive yoga and other non-pharmalogical interventions). We briefly tried meditate for attention deficit, but it was disastrous and we stopped quickly.She sees a neuropsychologist yearly for evaluations which we use to create her academic program, social / emotional support etc, a developmental pediatrician 2x year to monitor her meds and a regular pediatrician for regular check-ups, immunizations, etc.
I hope that’s helpful. Wishing you all the best as you move forward and hopefully get more and more insight into how to support your kiddo.
Jess, it’s been a crazy whirlwind. I have seen a child psychiatrist every 3 weeks for the past 6 months. Plus, we tried the new one, that has my mommy instincts saying “NONONO!”. She is medicated for ADHD…but I want to try non-stimulant meds on her. My town is limited in child specialists. I love our pediatrician, but he wants us to find a child psychiatrist to monitor the meds. I wish I didn’t have to deal with it, but getting her off of Schedule II meds would make things much easier as far as doc visits wise. But honestly, the stimulant has helped immensely. I just have to find a competent doc that I trust to make adjustments. I have ANOTHER appointment with ANOTHER child Psychiatrist on 7/15. She’s just started ballet and tap, and it seems to work for her. Plus she’s in t-ball, which also seems to exhaust/calm her afterwards, but only after several monumental breakdowns prior to the game. Thank you for your encouragement. Your blog inspired me to start a blog just dedicated the challenges and triumphs of this journey. https://mydaughtersanomaly.wordpress.com/ I’m also trying to navigate Aspegers with my teenager. Along with two other “NT” children.
I found you by some fantastic coincidence on Facebook. When I first liked your page I didn’t even realize what your page was going to be about and to be honest not even sure what the topic was about. I haven’t had any experience with autistic children but I serve on our volunteer ambulance and help a tremendous amount in my child’s school and having found you and read your stories and insights i hope to be the right kind of helpful if I am ever in a situation in which I am interacting with a child or a family that lives with autism. I hope I am conveying how I feel correctly. I appreciate you allowing us a glimpse into your wonderful family’s life.
love this. thank you, dawn.
Hi Dawn – don’t know if this would be helpful for you and your crew, but I saw it a couple days ago. It’s about autism and medical treatment challenges: http://www.psychologytoday.com/blog/aspergers-diary/201406/barriers-effective-medical-care-autistic-adults
I tried to find a way to send you a message privately but that seems impossible. I suppose you receive a lot of messages. I wanted you to know that although I don’t have a child with autism that I love and look forward to your writing about Brooke and your family. It has opened my mind and heart to a different perspective by sharing your daily struggles, victories and the way that you are growing every day within your journey of parenthood. I was in the Listen To Your Mother show this year in Sacramento and I found this video from another show that reminded me of you: https://www.youtube.com/watch?v=oGAlBg04qaI&index=7&list=LLSVRwxAxEQjvMLp4WjxX1eg
I really enjoy seeing your posts on Facebook. You are an amazing mother. Thank you for sharing your life and your stories with us.
How can I send you a link to an article I think you’d appreciate?
Just put it in a comment 🙂
I follow A Mighty Girl and saw this very inspiring post. Thought you might like it:
Hi, I have a question, how do you deal with stares and comments from other that don’t know “Brooke’s” issues but she is having a tantrum or meltdown? I have been having a lot of this happening. My 3 year old is yet to be diagnosed but we are patiently working on it. But know there is something different. We have heard people make comment and seen people stare. I’m doing my best to control him but well you know! Thanks!
Angela, I’d suggest posting your question on the community support page so that others can weigh in. 😉
Hi Jess – this came across my facebook page through Amy Sequenzia’s, and it’s – well – REALLY excellent. I didn’t know where else to post it for you to see/share.
http://karlamclaren.com/research-based-approaches-to-autistic-ways-of-learning/
I’m looking forward to digging into the info she cites. The approach to the research is a breath of fresh air.
Hi,
I have an 8 year old son with autism. I love reading your posts…I can relate to them on so many levels. Thank you!!! Thank you for letting me know that I am not alone!!!
Wanted to share a positive story
https://m.facebook.com/Jeffco411/photos/a.589675751111548.1073741827.589493424463114/717125131699942/?type=1
I have been following your Facebook page for some time now with my autistic daughter, who is 12. She enjoys seeing the photos of Brooke and wanted to send to Brooke one of herself. 🙂
Id love to show her a photo. Is she one of the beauties at ths top of your page?
She is my lovely ginger one 🙂
I also have written a bit about our journey here: My Journey to raising three special needs kids. | the7flowers
http://the7flowers.wordpress.com/2013/01/08/my-journey-to-raising-three-special-needs-kids/
Jess,
I heard about an article in the Atlantic today ( and have subsequently read it) in which Benjamin Netanyahu was insulted by a US Official using the term “Aspergery”. I hate to spread ugly, but I wanted to share this with you because you have a BIG voice. I’m very upset about this and plan on writing a couple of letters to people. Acceptance of our children will not happen until those with a voice quit spewing hate, intentionally or not. Thanks for your blog and your honesty. You saved my sanity a long time ago.
Hi, As a mom and business owner, I am seeking ways to reach out to the community in meaningful ways. I have been in contact with Dylan’s Wings of Change. I was wondering if you have any experience with this organization?
With apologies, I don’t.
I was wondering if you have read Estelle Ryan’s books. She writes fiction about a high functioning autistic adult who solves crimes. Great character driven novels.
i have not.
Hello Jess – not sure where to post this request for help (for a happy reason).
I was contacted this morning by a local radio station about taking part in a show about autism! Pleased, stunned, honored. Only a few details and not sure what their looking to know. I’d love suggestions from all neurologies, and especially from your autistic readers – what do they want highlighted?
Thanks so much! I will definitely be mentioning your blog, as you are the one who inspired me and connected me to autistic bloggers. You rock!
WOW! That’s all I can say. You are an amazing woman who has been blessed with two amazingly wonderful daughters. My girls and I enjoy reading about all your adventures.
Hi Jess! I’ve been following your blog via Facebook for quite a while. I want to thank you for helping me to understand autism and other disabilities better. I teach swimming lessons and have used so much of what I have learned from you in my approach to the children I teach. The difference in how the kids respond to my new approach is incredible! Thank you, thank you, thank you from the bottom of my heart! It is such an incredible feeling to see the progress they are making!
What do you do when you have a young extended family member on the spectrum, with profound symptoms (at a care facility), you live too far away to be part of their lives, and those closest have NO idea about presuming competence?
On top of that, you’re shut down by the parent and ANY information (NOT advice, just info, blog posts, etc.) you have to share that might be helpful is refused because “your child is not like my child, so you don’t have anything I need to hear”?
I have a good relationship with local aunt, and another uncle, but the aunt can’t “see” past the exterior symptoms – yet. How do I respectfully drop breadcrumbs? Or do I butt out? I just want them to have the tools to have the best situation they can have. I know it’s not my struggle, but I love them.
I found your site as I was searching for something more positive about autism. My five year old son received his diagnosis in October and all I have encountered left me feeling like I had been handed a huge new pile of therapy, prejudice, and fear without hope.
You have such a well written and articulate blog. I have especially appreciated your links along the sidebar, they are excellent. I found new hope and inspiration in your words. Thank you.
I have started my own blog, I was actually that inspired. I am hoping I will be able to educate my family at the very least, if they are the only ones who ever read it, and I plan to link extensively to yours! Again, thank you.
What makes the biggest difference is your attitude. You are able to put aside the negatives and focus on what makes your daughter special, lovely, and wonderful. That is what I am going to do with my son.
love this. and i’m thrilled that it’s going to get easier and easier to find positive, encouraging voices out there in the ether. one at a time. 🙂
Hi Jess, I am writing here because I am feeling a little stuck in my search and am hopeful that you or your followers might be able to help me.
We are planning to move to Dallas, TX from Virginia for career reasons but I am struggling with finding a school for my 7 year old son who is Autistic, Verbal, High functioning, and has sensory issues.
If you know of any resources that might be helpful or families reading this are from Dallas TX, can help with any information. I would be ever so grateful.
And last but not least, thank you for your words of encouragement, hope and inspiration for this awesome community. Your blog and your attitude has helped me get through some of my difficult days. Thank you once again for sharing your daughters experiences.
I hope to hear from you or from anyone out there,
Deepa
Deepa, if you put this on the community support page others will have a chance to respond. Also, if you look here, there might be some good places to start (as well as a couple to avoid)
http://www.specialneedskidsdirectory.com/parental-&-familly-resources-p4
may god bless you and your loving family with endless love and good wishes in stars takecare
Hey Jess, I nominated your blog for the Sisterhood of the World Blogger Award. 🙂
http://foreignindianwife.com/2015/09/30/sisterhood-of-the-world-bloggers-award/
aw, thank you! 🙂
Hey Jess, I am a mother of a 9 year old son who has Autism, he is non verbal, GERD and ADHD,and also my youngest is 7 and she is NT….
Thank you for sharing your story!
😉
Hi Jess. This is Shaz from Australia again. I just wanted to mention that if you ever want help reading all your messages and keeping on top of what’s appropriate etc then I’m happy to give you a hand. I figure I read everything you post anyway (and the comments). Of course I’d leave all the sticky and tricky ones to you! 😝 Anyway, just thought I’d mention it. Hope you are all well and that Brooke is doing ok after last night.
Thank you!!!
Would you please join us and help people!
These days, there are several millions disabitlites who lost their hands can’t use computer and smart devices, even reading an email. Mr Mehmet Nemo Turker developed the first assistive mouse in the world. It can help people without hands to operate computer and smart devices. He is raising an campaign on indiegogo,https://igg.me/at/glassouse/x/6266661 This campagin got supports from lots of non-profit organizations, including WHO. It has also been featured on many major media including Business insider, The verge, Gizmag etc.
If you think it is useful, can you write something to your readers? If it is out of your area, would you please share this project on your Facebook or twitter? A small action you take to share this project can help more people who want to use computer and smart devices. Thank you so much.
Sincerely
Owen Zhang
Mehmet is Turkish. In 2006 he traveled through China and found the country full of potential. So he quit his college in Turkey and joined a Chinese University. He got his bachelor’s degree in electrical engineering from Shenzhen Polytechnic, China. After his graduation, he started his own company in Shenzhen, Ceba Battery, and worked his way up to success in business. In 2015, inspired by his friend Caner’s experience, Mehmet decided to help millions of disabled people, like his friend, to enjoy a new technology, and soon he and his research team invented GlassOuse. To get more people come to know this project and help other people with disabilities, he started a campaign for GlassOuse on Indiegogo.
Jess, I am a huge fan of yours and get so much from your posts and the heart that you share. I am also a public school teacher/autism specialist. I work at the district level and support students with autism (or suspected autism) and like disabilities, teachers and parents. I wanted to share my recent FB post with you because I think you’ll “get it.” And today, I need to be got, because this job is hard, and my families struggle so, their jobs being so much harder than mine.
Here’s my heart today:
“Struggling to leave work at work. I fall in love with my kids and families and when they hurt, I want to cross school/home lines and do what I can to help. I am in the unique position to get to work with my students and families for their entire educational career; often over 15 years. We go through a lot together…but I am also a public school teacher.
As a believer I try to live my faith: “I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me…”. As a teacher, I realize that sometimes their personal life is, well, personal.
Such a fine line, such a hard balance. I wish I could tell them that I am praying for them. I wish I could tell them that I would be honored to listen to and walk through the pain with them. I wish I could tell them I know about their pain and I care.
For now, I will love their kid and do the best I can for him/her, hoping that that is enough. And, I will keep praying.”
Tell them. In some way, shape, or form, tell them. As a mom, I promise you – TELL THEM.
And thank you, from the bottom of my heart.
Hi,
I know that you don’t know me, but I stumbled upon your page awhile ago and have found it “showed up” for both my work and personal life many times.
I came across this today and wanted to send it along. I know Katie loves to sing, and what Godspell has meant for your family. It popped up in my feed today as I was lucky enough to have a course taught by one of the directors in high school and think it was an invaluable experience.
I know things don’t always work out, and maybe it’s not even something she’d be interested in or is feasible right now; but I thought of you when I saw it and wanted to send it along.
http://summerinstituteforthevocalarts.org/
Thank you for everything you do without ever knowing it! You show up and make a difference everyday!
Thank you!!