BlogHer - autism - Comments

I so agree listen to those with lived experience...

Asplanet — Sun, 05 Jul 2009 18:08:19 -0500

This is such a refreshing article, being on the autism spectrum and a mother of a child on the autism spectrum I thought I would be embraced, by the autism community, but so often the autism groups that do not employ autistic individuals and many parents with autistic children often kept at arm’s length, it’s like how can she know she has the problem too!

As for myself the autism community have been brilliant and it’s great to see more and more none autistic parents listening to those with lived experiences. I realize the gap needs to be closed as autistic and none autistic parents with autistic children need to communicate and listen to each other more, for this reason I have already started a link on my web site Conversation Exchange - Two Points of view : http://asplanet.info/index.php?option=com_content&task=view&id=115&Itemi... and will add a link to this very well written insightful article.

When you say: "We started to realize that DAN! diet and supplements affected nothing except our bank account....... and I guess that makes us the recovered ones, not our son"
I am continually hear this more and more and I do agree when children first get diagnosed it’s a huge shock and often no real support, the amount of money grabbing fad treatments is unbelievable, parents need clear options, and my advice has to be listen to the autistic community, they are the only ones who have helped me on my own journey and parents like yourself who now realize all children grow and adapt whatever we do, but if we work with them and embrace their differences, a little extra support, time and lots of encouragement works wonders. Aspergers Parallel Planet

Great info on your experience

autismfamily — Sun, 05 Jul 2009 13:13:41 -0500

My sons were diagnosed in 98 and 99, which is when CAN and NAAR were started. I have always shared that when I got the SLP assessment it stated "autistic-like" and also put me down quite a bit, I had two kids under three who did not talk in this small room and she had the audacity to write about my stress levels - the first of many assessments I hated.

I looked in the dictionary for autistic and then found a number to Autism Society of America (ASA) and spent several days ordering through their fax back system many documents on autism, still have some of those stapled pages.

I called the Hospital clinic and refused to have my child be seen by that therapist and a new one called me and we spoke before meeting and she ended up with both boys for a few yrs.

Back then I joined a yahoo group DTT-NET and read a lot of their stuff but never went to UCLA to see anyone, we stuck with OT and speech at the clinic, where they did joined therapies with the boys and used the pool they had down the hall for many of these appts.

Few yrs later after the third SLP due to two moving away the SLP and OT sent a ltr to the Dr suggesting Matt have a g tube due to feeding issues. Went to Childrens Hospital for a consult with GI and he agreed with me and our Ped that this was not necessary - then I stopped going there for therapy

Back when I first started writing in June of 05 at BellaOnline I posted about David Kirby being on Meet the Press and said I was just passing on the info not interested - I got hate mail that was so mean spiritied and a few yrs later when I mentioned we went to Ped and the boys got shots and TB tests more hate mail.

Even David Kirby sent me email but never sent me his book, not that I would have read it. For the past four yrs the most read articles are still -

Classroom Modifications, Supervised Visits and one on teenage suicide. I get emails from parents that are full pages in posting about how they feel and can relate to my site. I stated at the start that it was on my experiences and not on vaccines or cures. For a long time even the Help Group kept sending me their Press Releases trying to get me to be their advertising, did that once and never again.

Last summer I joined twitter and first learned of BlogHer and still not really sure why this annual conference and such hysteria from mom bloggers, I was turned off last yr as all I read about aws the swag - new term for me as well, and the drinking, so this yr not really even paying attention, I was looking for the information shared and did not seem to come across a lot of that.

I am also disappointed that there is no twitter discussions on the annual conference through ASA, many of the autism Moms seem to prefer BlogHer and that confuses me as well. I dont have time for any of that type of thing and seems many parents are doing all sorts of conferences and not sharing about their kids as much or even on autism.

First question most ask me is if I am doing gfcf for my kids. Or they feel sorry for me having two kids, but no one ever really asks about the kids and what their interests are and what books to read for them or toys, etc.

I started my blog to meet other parents since BellaOnline does not support comments, although there is a forum that was more active in earlier yrs. I was gung ho at first with the blog, but lost sight of the reason I started it in the first place.

Now I am trying to figure out what to do next, both kids in middle school and I got burned out on writing for a while and dealing witb so much and so many wanting something from me.

Matt is not going to ESY due to late signing up and the location is not safe, a high school and his aide did not get accepted, so eight weeks home and think we will do LA Zoo evey Friday and maybe try beach, never did that with them both as it is a lot for one person to do and they are opposite issues.

I talked on the phone yrs ago to Dr. Rimland and used to read a lot of his stuff to try to understand things. Kids have not been on supplements either and disabilities run in the family. Father is schizophrenic, my sister had a brain tumor and is blind, Alzheimers on my side.

Just recently a reader sent me an email saying that my kids might have brain injury from their father. People read that the father has PS and they assume he has been with the kids when babies, same with a Dr long ago who instead of helping me with feeding therapy wanted to re dx them. Back in 98/99 not a lot of families with two kids so who ever got us thru Reg Ctr wanted to do all sorts of things, but I would get turned off by assessment and do nothing, did not want these people in my home.

I did parent training for floortime when MAtt was 9 and this one parent asked me why I waited so long to do the therapy. I hate having to explain my family to others who think they are experts when their kid is only 2.

Anyway good article. Glad to retweet it and share on facebook.

Respect

Shannon Des Roches Rosa — Sun, 05 Jul 2009 02:46:16 -0500

Glad to hear from like-minders. This was a challenging post, and I hope it draws a clear distinction between parents who rigorously investigate and document choices -- whatever those choices may be, and those whose need to "fix" their child makes them exploitable. The latter need interventions, for their own and their children's sake. Thanks for helping to spread the message.

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph

excellent post

emily_raphael — Thu, 02 Jul 2009 19:14:35 -0500

Thank you, thank you, thank you. I'm passionate on this subject as a former DAN! parent who tried chelation and who has to live with the regret. When I put up a website for a local parenting group I got flak from a parent who wanted me to post links to "biomedical" sites. I refused and we got into a little showdown re the site's policy. I ended up essentially abandoning the site rather than give equal time.

I think a big problem is still that post-diagnosis, parents are often sent into the hinterlands with no real advice on how to proceed. We're often still thinking in terms of a medical model of treatment, b/c we've been to a medical professional, most likely, for diagnosis. First-line providers and pediatricians need to be better and more proactive about giving parents guidance. If we're left with only a diagnosis and no support, a lot of us go into research mode, and it can feel good: the "Lorenzo's Oil" fantasies, the Ph.D. in Google, etc. We are parent warriors and we will rescue our children. It's a satisfying narrative, but it wastes time and resources.

tweeted and facebooked. :) I

navi_ — Wed, 01 Jul 2009 17:13:15 -0500

tweeted and facebooked. :) I actually managed not to get sucked into the DAN stuff, but part of that had to do with not having the money to even if I wanted to, and the fact that my first turn was to check the electronic resources for the library I work for for peer reviewed material. I was oh, lovely, I can't afford 40 hrs a week of ABA.... did't know about all the resources I qualified for through our community mental health department.

The antidote is education!

toni_lapp — Wed, 01 Jul 2009 15:17:56 -0500

Thanks for sharing your personal experiences. Autism can be a devastating diagnosis, and parents often cling to promises held out by unproven therapies -- especially since there is so little research out there. As an editor of an online magazine (www.spectrumconnection.net) that supports families affected by autism, I've gone to many autism walks and conferences and have always been wary of exhibitors peddling programs that promise a "cure."

First off, autism needn't be the calamity it's presented to be. Perhaps parents wouldn't be ripe for the claims of these modern-day quacks and charlatans if they knew this.

Second, if we form a bloc and share information, new parents might not fall victim to these programs.

BRAVO, Shannon!

I Have Things — Wed, 01 Jul 2009 12:07:21 -0500

I am SO glad you pushed through and finished this! You rock, girl.

And you're absolutely right. One of the things I always tell people who are following what I think may be cult-ish, spurious lines of medical reasoning is to keep in mind this old scientists' saying: The plural of 'anecdote' is not 'data'. I don't care how many people tell you about how their sister's boyfriend's cousin did well on this regime or that supplement...until it's been subjected to rigorous and widespread scientific scrutiny, it's nothing but rumor.

Great post. A must-read

Squillo — Wed, 01 Jul 2009 10:15:27 -0500

Great post.

A must-read for all new "autism families."

Landmines everywhere!

moonfever0 — Tue, 23 Jun 2009 22:04:21 -0500

I don't know when vaccines have become such a hot button issue. I have always believed in the benefits of vaccines. Doesn't anyone remember that smallpox has been eliminated because of vaccines? And how many people are NOT crippled because of the polio vaccine?

I heard a recent episode of This American Life where a ten month old baby contracted measles by going to the same pediatrician's office with a boy who had measles and was not vaccinated. The sheer terror of hearing that baby's struggle to stay alive because of one parent's selfish paranoia moved me firmly into the "you MUST vaccinate" crowd. I agree completely with the mother of the baby who felt that if you're not going to vaccinate your child, you should move to your own infectious diseases island.

People should have a responsibility to society and not just their own agenda. If they don't respect promoting the overall well-being of society at large, then they should move off the grid, have their own doctors, and stay out of public places. Sure they can over-protective and paranoid, but they should also be quarantined to stop them from endangering the lives of innocent babies.

As far as the MMR vaccine, I'm not convinced either way about its link with autism. But the Spock quote which was repeated during that This American Life show still holds, "The needs of the many outweigh the needs of the few."

(Whew, I'm glad I can vent here, and not post this on my blog only to be flamed to death.)

Angela at mommy bytes
BlogHer Contributing Editor in Mommy & Family Cribsheet

Thank you so much....

Grey — Mon, 22 Jun 2009 19:38:54 -0500

Thank you for posting this. I have three boys, two with ADHD, and sometimes going out is a nightmare. I want to take them to see "Up", but I often avoid going out because it is hard to manage them on my own and people rarely view their ADHD behavior as normal behavior (they often think it's simply a lack of discipline on my part).

My kids have different needs but there's a lot here that can help. Thank you so much for sharing!

http://2ndverse.blogspot.com/

Best When Out

AutismLearningFelt — Mon, 22 Jun 2009 11:16:16 -0500

My son loves to be out in public. He is a wanderer. He can move really fast in a short period of time. He also bores easily. We love the aquarium and have found that it is better for all of us if we go off season. The same goes with the zoo. The less crowded a place is, the easier it is to keep track of him.

Brave Souls

Shannon Des Roches Rosa — Sun, 21 Jun 2009 14:19:09 -0500

It's amazing that we all leave the house at all, sometimes, isn't it?

@Diana, @Karianna, @Kristen, I very much appreciate your comments, am in awe of what you do, and wish you good luck on future endeavors, scheduled or non-.

@Jess, thanks for the extra tips. We actually haven't flown with Leo for over a year because of a spectacular departure lounge meltdown. But we're going to try again on July 3rd...

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph

Good Post!

Connorsmom — Fri, 19 Jun 2009 14:38:00 -0500

I enjoyed the tips!

We make a point of taking Connor out as much as we can. The only way he's going to learn how to handle being in crowded places is if he's exposed to them repeatedly. Why should we let his special needs keep us at home?

We try to pick family-friendly restaurants or else go to small, home-town eateries where we can cultivate a personal relationship with the owners rather than corporate places that are less likely to be understanding. Our biggest obstacle is finding places that are fully handicap accessible; our son's wheelchair limits some of what we can do.

I especially liked your reminder about the rights of people with disabilities on airplanes-- we've flown many times and I've discovered that if we let the airline know about our son's special needs before hand, they'll board us first and let us leave first, give us extra help, seat us near the restrooms and by the window, etc. We just have to make sure to let them know ahead of time.

One thing we also do is keep an emergency list of Connor's conditions, doctors, medications, etc with us at all times. That way if there's an emergency or an accident and I'm unable to let people know about his needs, they've got all of that information right there.

Great post-- thanks!

~Jess

http://connorssong.blogspot.com

Thanks Shannon!

kristenspina — Thu, 18 Jun 2009 10:33:21 -0500

Thanks Shannon for all the great tips. This is so timely with summer upon us.

We did Disneyland for the first time last year, and for us the key was taking it slow, taking lots of breaks, and asking for (and getting!!) their special needs accommodations pass (guest services) that allowed us to skip ahead on really long lines that would have otherwise been intolerable. We hope to do Sea World this summer and you can bet I'll be asking if they have a similar pass.

Great Tips!

Karianna — Thu, 18 Jun 2009 10:12:02 -0500

Fabulous tips!

The recharging bit is key for us -- many times we've expected to leave in a blaze of crying meltdown only to discover that if we duck into a quiet space and just chill for awhile, all becomes right with the world again.

Thanks for the info about the airline rights - I remember that story some time ago about a boy who was kicked off a plane before it took off because of his autism (or ASD-like behavior - don't remember exact details.)

And thank you especially for the bit about how to treat all kids like... kids. "If you need to modify your approach, we'll let you know." - perfect line.

-K