**
because it is a sense of community that makes the good times sweeter for the sharing and the hard times more bearable for knowing that we’re not alone.
**
**
Photo by Kathleen Connerton
**
Hi, I’m Jess. My husband, *Luau* and I have two beautiful daughters – our eleven year-old, *Katie* is an utterly fabulous, compassionate, generous, creative, loving fifth grader who for the life of her can’t seem to remember where she put .. well .. anything.
Her little sister, *Brooke*, nine, is an affectionate, talented, hilarious third grader who has autism. I am proud beyond my wildest dreams of my girls and I thank God every day for blessing me beyond measure with this incredible life.
** not their real names **
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
Comment by Lindsey Mc — August 22, 2008 @ 4:25 am |
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!
Comment by Philip W — August 22, 2008 @ 12:08 pm |
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
Comment by Denise — August 22, 2008 @ 1:22 pm |
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
Comment by Sheila Handler — August 24, 2008 @ 11:03 am |
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!
Comment by Cathy Richelieu — September 11, 2008 @ 4:45 pm |
Greetings!
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Warm regards,
Danica Parker
Comment by Danica Parker — October 10, 2008 @ 10:21 am |
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!
Comment by Bebeth Abayabay — October 25, 2008 @ 1:05 am |
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
Comment by Tracy — December 25, 2008 @ 5:52 pm |
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
Comment by Marjory Trott — January 28, 2009 @ 10:56 pm |
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.
Comment by Mel V — April 3, 2009 @ 10:38 am |
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!!
Comment by Blanca — June 15, 2009 @ 11:58 pm |
Blanca:
please contact me….I think I can help you.
God bless you,
Heather
Comment by Heather — November 10, 2009 @ 4:18 pm |
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!!
Comment by mama25girls — July 10, 2009 @ 2:40 pm |
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
Comment by Matt Robinson — July 15, 2009 @ 1:50 pm |
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.
Comment by Lori Gay — July 31, 2009 @ 1:42 pm |
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
Comment by hughgk — October 27, 2010 @ 11:13 pm |
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!
Comment by Russ — July 31, 2009 @ 2:58 pm |
WOW! Fantastic that persistence and insight helped solve the problem!
Comment by hughgk — October 27, 2010 @ 11:06 pm |
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
Comment by Heather — November 10, 2009 @ 4:21 pm |
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.
Comment by Treating Symptoms of Autism — December 10, 2009 @ 10:39 am |
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
Comment by dq74 — December 13, 2009 @ 9:07 pm |
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.
Comment by bestmom — December 14, 2009 @ 11:51 am |
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)
Comment by Edward D Iannielli III — January 2, 2010 @ 7:38 pm |
thanks so much, edward .. all the best to you and your son!
Comment by jess — January 8, 2010 @ 11:10 am |
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
Comment by AmyLyn Reardon — January 15, 2010 @ 2:29 pm |
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!
Comment by Melinda — February 3, 2010 @ 2:30 pm |
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
Comment by kk — February 8, 2010 @ 9:43 pm |
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…).
Comment by Aoife — May 1, 2011 @ 3:45 am |
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
Comment by Kim McCafferty — March 22, 2010 @ 12:58 pm |
Please notify me of subsequent comments and posts.
Comment by Kim McCafferty — March 22, 2010 @ 12:58 pm |
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
Comment by Dan Hite — April 12, 2010 @ 2:17 pm |
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.
Comment by Amber — April 29, 2010 @ 6:16 pm |
Sorry – he’s 12.
Comment by Amber — April 29, 2010 @ 6:17 pm |
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.
Comment by Martha — May 3, 2010 @ 5:32 pm |
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?
Comment by Jennifer — October 8, 2010 @ 11:34 am |
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!
Comment by Laura Britzius — October 11, 2010 @ 9:35 pm |
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
Comment by autismdad1966 — October 13, 2010 @ 7:59 pm |
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
Comment by aimee — November 5, 2010 @ 7:20 pm |
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!
Comment by jess — November 5, 2010 @ 7:37 pm |
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/
Comment by jennifer — November 21, 2010 @ 7:37 am |
welcome! and thanks for sharing. i look forward to reading about your girl!
Comment by jess — November 21, 2010 @ 9:27 am |
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
Comment by Danielle — November 23, 2010 @ 8:12 pm |
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!
Comment by Cheairs Graves — February 20, 2011 @ 8:54 pm |
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.
Comment by Justine Miller — March 17, 2011 @ 6:57 pm |
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
Comment by Meredith — March 22, 2011 @ 9:33 am |
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
Comment by Pam Dennen — March 23, 2011 @ 8:13 am |
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
Comment by Natalie Howard — March 29, 2011 @ 10:32 am |
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
Comment by Stacy — March 29, 2011 @ 1:58 pm |
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.
Comment by Donna Michelle — March 31, 2011 @ 12:07 am |
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:
http://vimeo.com/7654323
High Res DVD Art:
http://www.cinemalibrestudio.com/clscatalog/2011/LovingLampposts_3D_HR.jpg
Facebook:
http://www.facebook.com/LovingLampposts
Twitter:
http://twitter.com/lovinglampposts
Comment by Ana Pineda — April 15, 2011 @ 2:52 pm |
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
Comment by mbamommy — April 21, 2011 @ 2:40 pm |
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.
Comment by jacobsasdchallenge — April 26, 2011 @ 2:47 pm |
[...] now, I’m here to follow diary and a handful of others. Maybe, one day, I’ll use this forum to say what I want to say, to [...]
Pingback by Hello world! « cameronease — May 29, 2011 @ 8:34 pm |
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
Comment by mary — June 13, 2011 @ 2:54 pm |
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
Comment by Tina — June 28, 2011 @ 12:28 am |
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
Comment by Beth — August 1, 2011 @ 8:03 pm |
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
Comment by Nikki — September 9, 2011 @ 10:09 am |
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)
http://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.
http://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:
http://www.amazon.com/Sometimes-My-Brother-Understand-Siblings/dp/1932565310
http://www.amazon.com/All-About-Brother-Sarah-Peralta/dp/1931282110/ref=pd_sim_b_1
http://www.amazon.com/Everybody-Different-People-Brothers-Sisters/dp/1931282064/ref=pd_sim_b_2
http://www.amazon.com/gp/product/1890627291/ref=pd_lpo_k2_dp_sr_2?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=1932565310&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=1XTJDA8MCBRCCJPYK8BF
i hope that helps!
J
Comment by jess — September 9, 2011 @ 12:47 pm |
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
Comment by Sue — September 23, 2011 @ 2:08 pm |
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
Comment by Children's Mercy Family Health Partners — October 18, 2011 @ 12:33 pm |
[...] read a post the other day from a blog called A Diary of a Mom written by a woman named Jess. Jess is the mom of two young girls, one of whom has autism. All [...]
Pingback by It takes a village « Adoption Choices: Building families since 1982 — November 1, 2011 @ 9:04 am |
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/
Comment by Meredith — November 9, 2011 @ 10:00 am |
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.
Comment by AndyMommy — November 14, 2011 @ 8:49 am |
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
Comment by Jeremy Riesenberg — December 5, 2011 @ 1:35 pm |
this is beautiful, jeremy, thank you for sharing it and a very happy birthday to your sweet boy.
Comment by jess — December 5, 2011 @ 9:29 pm |
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
Comment by Kim — December 14, 2011 @ 9:23 am |
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!
Comment by Melissa Stevenson — December 25, 2011 @ 11:17 pm |
melissa, this is absolutely beautiful – thank you for sharing your family!
Comment by jess — December 28, 2011 @ 5:21 am |
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
Comment by Jamie Pacton — January 8, 2012 @ 12:33 pm |
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.
Comment by Lauri Crowe — February 5, 2012 @ 9:24 pm |
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.
Comment by Kelly Dineen — February 28, 2012 @ 5:07 pm |