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My greatest hope is that the discourse on this blog and its accompanying Facebook page can serve as examples of environments in which compassion, understanding and mutual respect are paramount.
That said, I publish nearly all comments, but there are rare exceptions.
I have long been frustrated and deeply saddened by the chasms in the autism community. I will not allow diary’s comment section to become a megaphone for the anger that serves to keep us divided.
I will not abide personal attacks, either on me or my readers. While I actively welcome constructive disagreement and respectful discourse, this is not a forum for unproductive anger, particularly that which is directed at one another.
While I am happy to respect anonymity, please note that I also do not publish comments without a name (or consistent pseudonym) and a valid e-mail address.
From the bottom of my heart, I thank you – not just for sharing in our family’s journey, but for joining the conversation. And in so doing, respecting each other, supporting one another, and finding ways to bridge the space between us.
ruh roh…..
Thank you for allowing us to share here.
I am so sorry it was necessary in such a forum to have to say something like this! Your blog has been a source of strength for many…try not to get too down about a few people who miss the point.
Who’s bothering you? Just say the word…
Just sayin..your back is covered
You always say things so well! You go girl!
Too bad this happens. A shame really! I LOVE this blog and follow on Facebook too! Thank you so much for being here!
thank you all so much for your support. xo
I am always surprised at the depths of peoples anger towards other families dealing with autism on message boards! I respect the fact that people disagree but so much time is wasted on negative, why bother?
Great policy, Jess!
Love you,
Mom
I am with ruh roh…
and know that I love you all, and feel so grateful that you let me in to share the journey a little with you….xoxo
It’s nice to see a site with so many positive attitudes and comments. I have a 17 y/o with a dual diagnosis of Down Syndrome/Autism. He is so precious…as long as he’s happy , I am happy. Now I also have a 21 y/o son who I believe strongly has ben misdianosed for A LONG TIME. He has been labled with ODD,PTSD,DEPRESSION,OCD…too many to remember! He has all the hallmarks of Aspergers but will not have anything to do with that diagnosis so I don’t battle with him.(Other professionals have agred with me) He has made some great strides in the past couple of years and hopefully will be starting college next year but in his words “I have to ready” Mean while he keeps himself busy with his art (he wants to major in animation). It has been a rough 32 years ..I have four other children but the rewards are what remain. Gail
‘the rewards are what remain’ .. beautiful. thank you so much!
As a teacher of students with autism there are so many things I need to understand about my students and parents. Currently, I have a student who is struggling with behavior in school and the parents feel sure the school is to blame for the issue. If you could help me in any way I would be so indebted. My little guy tantrums when any demands are placed on him that he does not wish to comply with causing disruptions in learning for the classroom.
He is smart and engaging, but missing so many things because of behavior. The parents are loving and very supportive but in denial about the extent of his behavior. He is at risk of being suspended from school and they finally realize we must do something to help this child. He has been diagnosed autistic, sees a psychologist, is medicated (prozac and risperdone), has hyperlexia but school is a battleground. The parents report the behavior at home is just as bad. Any advice to me as his teacher would be helpful. Also, I am an itinerant teacher who travels to seven other schools so I am not with him all day. He is in a general education kindergarten with about 19 others staffed with a teacher and aide. He does not receive any other special ed services other than me which is once/week for 45 minutes. Thank you for your blog and the invaluable insight you have provided me into the workings of the family with such a special child.
Kathy,
This little boy is very lucky to have someone seeking information on his behalf. Unfortunately, I think it would be really irresponsible of me to dispense advice knowing nothing about him or his situation. It sounds as though he desperately needs far more services – beginning with an inclusion specialist or case manager working with a BCBA (a board certified behavior analyst) who can work to create an appropriate program for him. So many of our kids tantrum when they don’t have another way to communicate distress. It’s vital to create structure and predictability for our kids – visual schedules telling them what to expect can dramatically ease the challenge of transitioning from one activity to another and help our kids understand what’s expected of them. It sounds like the best thing you can do is to alert both his parents and the special ed administrators that the child desperately needs far more support in the classroom than he’s getting. Again, on behalf of all of our families, I thank you for trying to help and wish you all the best as you work to serve this child appropriately.
Thank you for this…in all the best of ways…I have worn the cloak and it too is hung…and now only joy…and work….and joy!
Like you, we get beautiful, candid pictures of my daughter. Getting somebody in the frame with her is tougher, but not totally impossible – but it’s ALWAYS candid and sort of “blink and you miss it”. (she’s also not a lap kid, which sort of makes it harder) The only photo of all three of us in the frame together occurred before she was old enough to object – about 5 months old – she’s now 3. My MIL is constantly trying, at parties and group events (another 2 issues in and of themselves) to get her to participate in said photos…it doesn’t happen and we don’t force it. I would love to find a photographer, who didn’t cost an arm and a leg, to just take a couple of shots of the three of us.
Amen!
My name is Amy and I have a son that was recently diagnosed with Autism with Developmental Delay. It has been an everyday battle of ups and downs and the one constant in my life was my job and there support with bringing Christopher out of the shadows. Christopher is doing incredible, I wish I could say that about the job. Unfortuneatly I was informed yesterday that my job as the Assistant to the President/CEO was over. That Iwas moving to the front desk of an association to answer phones from 9-5pm Monday thru Friday. My boss was always so supportive when we received the diagnosis this past March- I was told do whatever you need to do for Christopher. We did. He is now in numerous therapies 5 times per week begining at 8am most days. I informed him of the schedule and he was “fine” with it. I was informed yesterday that I need to report to work everyday at 9am- which means I need to leave the house by no later than 7:40am. In turn, means missing therapies. Me and my husband share the responsibilities of Christopher’s therapy schedule and schooling together as a team. He is the “bread winner” in our family. Is there any laws out there that can help me with being able to arrive at work late? I could understand that if there was a reason for me not to be able to complete my work – but there is no work load. There has to be something out there…. we don’t have the typical situation with our child… any help would be greatly appreciated. There has been many comments that he has said that I have a special child and I should consider being a stay aty home mom…
Amy, I’m so glad to hear that your son is doing well. As for the questions regarding the job, I would suggest contacting the Autism Speaks Response Team – they can hopefully help.
http://www.autismspeaks.org/family-services/autism-response-team
Good luck!
Hi Jess, I’ve been reading your blog for a while now to write in today. I reread your Welcome to the Club today, and you know what? Turns out you were right, I’m not wearing that cloak anymore. It must be hanging in my closet today, and it feels fabulous!
Melanie
Oh this warms my heart!! Thank you for sharing. xo
I have a son PDD-NOS. i read you and MOM-NOS frequently. I thought you both would be interested in this blog entry. I live north of New Orleans and have tried to attend parades with my whole family. My PDD son could care less about the parades
. Thanks for reading and I hope you enjoy the comments to the blog as much as I did.
http://nolafemmes.com/2012/02/23/litupparade/
That was beautiful. I also think that people who work with special needs children should also get a thank you! I worked for a special needs group home in CO with 10 kids and worked about 90 hours in 6 days for 5yrs. It wasn’t always roses and I got beat up everyday. You name it its been done to me even a broken nose. They taught me patiance; over coming small obstucles is a big deal; you can act silly as you want and they laugh. I can go on and on… They were my family. When I tucked them into bed and they give you a hug
that’s when I said to myself I can make it thoug another day. Then told them I will see you tomorrow!
What a great piece. So happy to have found you. Here some info on a project a friend and I are working on….. http://5boysand1girlmake6.com/family-life/changing-the-face-of-beauty/
Hi, I really enjoy your blog. I wanted to let you know about a research project I am conducting. I am a neuroscientist but also the Mom of a son with ASD. We are trying to find biomarkers that can help facilitate ASD diagnosis. Here is the link to our project. I hope that you will be interested.
Thanks so much,
Alisa
Here is the link that goes to the comment above, silly me!
http://www.rockethub.com/projects/11806-autism-and-protein-markers
I noticed a like on a status off your Facebook page , I continued to read and read , smiling to myself at achievements such as the switch from the Hershey bar to the lollipop, but also felt sadness for your little girls struggle and your families ! But wow what a lady you are , it’s our job as parents to do our best ,you are excelling this ! so from a mum in England keep blogging
Regards
Alex
Thank you, Alex
With everything going on in your world right now, this is going to sound silly. But I’m going to share it with you anyway! I don’t even know if this is the correct way to message you. If it’s not, I apologize. Anyway, I was in Target this morning and I saw an entire shelf of “Dora the Explorer” tissues. I immediately thought of you and should let you know they were there. Ya know…just in case someone in your household likes Dora. Here’s hoping y’alls day gets better!
Look at the FB page