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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 you’re not alone
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Hi, I’m Jess. I have 2 beautiful daughters – Darby, who is a typically a-typical 8 year old and Kendall, who is a high functioning 6 year old with autism, along with sensory processing and coordination disorders and some pretty serious anxiety issues (all of which can be par for the course in a child on the autism spectrum).
I am proud beyond my wildest dreams of my girls.
As spectacularly wonderful as being a parent can be, it can also be an emotional roller coaster. As rewarding as being a parent of a child with different needs can be, it can also be very difficult, and at times, very isolating.
I have found great solace in the community of parents who are willing to share their stories and remind me that I am not alone. And so, with this in mind, I share my own stories. I hope you find yourself in them, whether you are touched by autism or not, whether you have a child with special needs or you don’t. Though some of the details of our experiences may be different, I truly believe that there is an awful lot that is the same.
To love a child is to love a child.
Thank you for your interest in our journey.
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 |
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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, Darby, Kendall and Matt. My son, Mitchell was in preschool at (deleted) with Kendall 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, Kendall 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 Darby and Kendall. 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, Kendall 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 Kendall 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 Kendall’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 |
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 |
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 Kendall.
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 |