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Not Another Autism Blog

Autism is not going away anytime soon. Here is another perspective on the daily challenges

Everyone is an expert in the blogosphere, well except me.  That won’t stop me in 2013 because I’ve wanted to write about autism since my son was diagnosed at age two.  It his hard to believe he is 14 years old.  By now, you’d think I’d have the hang of raising a child with autism but I am still making mistakes.  By blogging maybe other families with younger autistic children can learn from my missteps. 

Yes, the HP Patch has already seen two previous autism blogs, however I will attempt to add another perspective on this growing epidemic.  I refer to it as an epidemic because 1 in 90 children is diagnosed with Autism.  At this astonishing rate, even if you don’t have a child with autism you probably know someone close to you who does have a child on the autism spectrum.  

An autism diagnosis is devastating.  Earlier on, while my friends still had aspirations of raising the first Jewish Female President of the United States I was frantically getting on waiting lists for the best Speech Therapist, Occupational Therapist, and Behavioral Therapist.  During this period, I lost touch with my core group who I shared the same left-leaning politics, interests, and sense of humor and made new friends that I had nothing in common with but autism.  All of a sudden I didn’t care if someone was a defense-of-marriage-act Republican, I just wanted to know if the gluten free diet they were feeding their kid with autism made any noticeable cognitive difference.  

Over the years, my autism circle has expanded to the point where we have many things in common.  I’ve also reconnected with my some of my high school and college friends.  However, at times there is still some awkwardness with the parents of NTs (Neuro-Typicals...the politically correct term for “normal kids”).  For example, as my friends are free to be spontaneous again, no longer scheduling sitters, I cannot make plans spur of the moment.   I wish I could share the following autism etiquette with them in person but only have the nerve to put in a blog: 

1. Please don’t tell me about the problems encountered bringing up a gifted child.  It does not make me feel better.  

2. Please don’t tell me that “it was meant to be”, “God’s plan”, “a gift”.  I would sell my soul so that my son wasn’t challenged everyday by the barriers of autism.

3. Please don’t be fooled by the media’s representation of autism.  It is not a quirky, fun label with a savant skill consolation prize.

In re-reading the above, I wish I could soften the tone and somehow convey the same message about autism.  I know I am lucky to have a child who can talk to me, express love and bring me joy daily.  I also know I am lucky to live in a community that has so many services for the developmentally disabled.  It gives me such relief to see those with learning challenges safely maneuvering their way on our public transportation, stores and streets.  Highland Park embodies the phrase It Takes a Village.  

I don’t know if I am wasting my time attempting the Patch’s third autism blog. To paraphrase the Violent Femmes, the world needs another autism blogger like I need a hole in my head.  

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

Procrustes' Foil January 06, 2013 at 12:09 PM
I've been following information about the epidemic of Autism spectrum. Why is it NOT an epidemic in any other advanced, post-industrialized country? This epidemic seems to be limited to the United States.
FamOf4 January 06, 2013 at 03:29 PM
I seriously cannot believe the tone of the post from Mr. White. It's haunting that he is looking at it as a lecture, rather than some simple human honesty. Believe it or not, what she said HAS helped parents with autistic children because it is a comfort to know that we all feel like that at one time or another, and we aren't so flipping alone in this daily battle. A battle that haunts us should something happen to US and these children are left alone. But that gifted child will be able to go away to school, cross the street ALONE, live alone, have FRIENDS, and earn a living. A person like this couldn't spend five minutes in my house because he is a coward and quite frankly, a bully and lacks compassion and understanding. Jill - keep bringing your message, feelings and knowledge to all with an open heart . . . .
Michael Moore January 06, 2013 at 05:19 PM
Jill. Great blog. We have a 10 year old boy with autism. Your blog hit the nail on the head. We have twins. One NT. Hard to balance everything. Are you on PUNS list? Please continue blog. Thks..
Jill Goldstein January 06, 2013 at 05:58 PM
Michael, yes my son is on PUNS. That is one of the reasons I wanted to blog so I can share the importance of things like PUNS. I will definitely write about it soon. In the meantime, a brief explanation of PUNS for others is that the IL Dept of Human Services maintains a list of those with developmental disabilities. Some on the list get state services but it is important for all to be on the list so our state government knows how widespread the need. Thanks for your support!
Jill Goldstein January 06, 2013 at 06:00 PM
Hi Violet: I will sign up for the Deerfield Patch so I get your blog. I am sure I will be all over the board on my blog since there are such highs and lows. I will try to balance it.
Ericka Labedz January 06, 2013 at 09:51 PM
What a nice surprise to see you on HP Patch, Jill! I am so grateful for having met you through our mutual association with other fabulous mothers with kids on the spectrum. I don't know what I would do without all of you! Thank you for writing your experience. I look forward to reading more.
Betsy Brint January 06, 2013 at 09:59 PM
Hey Jill - Thanks so much for your fabulous Blog - and keep on writing - both before and after glasses of wine. I find your comments refreshingly honest. I share in your frustration of people singing the praises of parents of children with special needs... My least favorite are the people who say, "God only gives you what you can handle..." Are these people nuts? If that were true, God would be giving all these people the support they needed (financially, emotionally and vacationally - that's a new word I made up). But that's not what happens. Raising children is hard. And raising children with special needs is hard X 100. These parents are no different - they just rolled the genetic dice like we all did and that's how it landed.
Jill Goldstein January 06, 2013 at 10:44 PM
Hey Betsy, I was motivated to write by your column. So really people should address their complaints to you.
sibuna January 07, 2013 at 01:21 AM
No, they should address their complaints to author, not to the inspiration. If you're going to write something that the public reads, you should be able to take the criticisms as well as the praises. More importantly, take responsibility for what you write instead of making it a point that someone else "inspired" you in a lame effort to deflect the criticism. Suck it up lady.
Andrea S January 07, 2013 at 02:29 AM
While we don't live autism in our family, I do understand the myths and misconceptions of dealing with a diagnosis. My daughter had Type 1 Diabetes and what is put forth in the media, especially when they fail to denote between Type 1 and Type 2 makes it all the much more fun. I look forward to your blog posts, even though I don't walk in your shoes, I do understand the loneliness of a dx and the need to connect with others "like you." Education is key to understanding. And if someone new comes across your blog, I hope your experiences will help them to feel not so alone.
Susie January 07, 2013 at 02:53 AM
Already learning ... Not on the PUNS list here. Didn't know of it. I was also unaware Deerfield had an Autism blog too! Great job ladies! Getting that awareness (and hopefully acceptance )out there.
Jill Goldstein January 07, 2013 at 04:02 AM
I signed up for PUNS thru the agency Community Alternatives Unlimited. I update with them yearly. Their phone number is: 773-867-4000. You can call them and tell them you have a child with a disability and you want to be on PUNS. They will take you thru the process. One year NSSED (North Shore Special Education District) had a PUNS registration in Highland Park. I am not active in NSSED anymore but I can call and check.
Betsy Brint January 07, 2013 at 03:53 PM
Zuzu, I don't think you are aware that Jill has a sense of humor and she also has a child with autism. It is possible to have both.
Emory Clark January 09, 2013 at 12:35 AM
Consider finding (I mean digging in and seriously searching) for products which bring absolute joy to the child and not just some form of therapy. There's more to life that therapy. I manufacture the Swring and testimony coming from every corner of the country emphasizes its immediate calming effect. I've never heard of child being frightened by it - only mesmerized and by the way it has profound positive outcomes regarding vestibular awarenss.
Bonnie January 12, 2013 at 05:26 PM
Jill Thank you for sharing your heart felt, authentic feelings. I'm glad that you have this opportunity to enlighten the rest of us and to channel your voice of experience. Bonnie
Deborah February 19, 2013 at 11:18 AM
JIll, I thought your blog was excellent and what i heard was 1) Big shout out to Highland Park for support 2) Focus on making sure to focus and prioritize on reality and what is evidence based, not just "out there" (don't be fooled by it....) Thanks from a mom of 5 and a pediatric OT working closely on a multidisciplinary team in Highland Park and around www.NSPT4kids.com I am here for you if you have specifics you want to talk about re your son, even though there are plenty of experts, not so many may be helping. Take care!
Sully February 19, 2013 at 02:00 PM
I didn't get the feeling that was her intent, Walter.
Sully February 19, 2013 at 02:08 PM
Why such vitriol? I thought her comment about mellowing with wine was pretty funny. You guys seem to be reading things into her writing that isn't there. One of the most necessary qualities for parents with kids on the Autism Spectrum or other "handicapping" conditions is having a sense of humor. Parenting these children is stressful enough. Humor can help relieve some of that stress. Jill, where would you say your son is on the spectrum?
Sully February 19, 2013 at 02:13 PM
However Lisa, each individual is different and responds differently to medical resources. I would hesitate to say parents should consider alternatives before trying a more research-based therapy. I also would not say don't ever try alternatives. Unfortunately, so much of medical or holistic therapy requires trial and error.
Sully February 19, 2013 at 02:19 PM
That could depend on the diagnostic criteria. Autism Spectrum Disorders can manifest themselves in so many different ways, that at times, a definitive diagnosis can not easily be made. ADHD is frequently coincides with Autism, so some could be diagnosed with that disorder. One does have to wonder though, why these conditions are so prevalent now. Could part of it be due to the profits pharmaceutical companies earn by having so many meds. prescribed (not just with Autism, but a number of other "mental" conditions as well.
Jill Goldstein February 19, 2013 at 03:40 PM
Thanks. It is great to get feedback for a professional in the autism field
Vicky Kujawa February 19, 2013 at 06:23 PM
Hi Jill, have you tried some modifications to your son's diet? Children with Autism spectrum disorders often have autoimmune disorders as well. Thanks to the genetic modification of corn, wheat and dairy products (as well as some environmental triggers), we have a growing generation of Autistic children. I would recommend removing all wheat, corn and dairy products completely for a few weeks, and slowly reintroducing Organic versions. Avoiding corn syrup, Aspartame, BGH and hydrogenated oils won't hurt him, either. For some reason boys are more likely to be diagnosed with Autism than girls are. Stay focused on helping your son to be the best that he can be. All the best to you and your son! :)
Sully February 19, 2013 at 06:50 PM
With the exception of depression, boys are pretty much diagnosed more than girls with most disorders that are originally identified in childhood. (Vicky, with this kind of topic, I declare a truce. You?)
Jill Goldstein February 19, 2013 at 08:29 PM
Yes, I've tried special diets. It helped Henry when he was younger but not in more recent years. Did you know I've written a few blogs since this original one including one this week called The New Scarlet Letter? I hope you'll check it out.
Vicky Kujawa February 19, 2013 at 08:36 PM
Hi Jill! No, I did not; but I will check them out. Thanks! :)
Vicky Kujawa February 19, 2013 at 08:36 PM
lol Sully; I didn't realize that we were in a war!
Vicky Kujawa February 19, 2013 at 08:39 PM
We need cases of the 5-gallon wine jugs in the political forums.
Vicky Kujawa February 19, 2013 at 08:40 PM
.....make that truckloads!
Emily Nicol February 20, 2013 at 06:37 PM
Jill, my husband and I are looking to move to Highland Park or Deerfield within the next few months and we have 2 year old twins, one with autism and one without. Do you have any experience with therapists in your area that provide ABA, speech and OT, and is there one you would recommend? Also, what is your experience with the schools there...is there much bullying towards kids who are different? Any help or advice you have would be appreciated. Thanks!
Jill Goldstein February 21, 2013 at 12:30 AM
HI Emily: I think the kids in this area are very nice to the kids on the spectrum. Yes, I have therapist recommendations and I can put you in touch with other parents too for their recommendations. Feel free to email me at jcgoldstein@comcast.net

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