Autism, Asperger's and more, oh my!: Recent Comments

Comment on Conductive Education - Little things mean a lot

James — Mon, 11 Aug 2008 14:45:58 GMT

Lori-ann! Splendid, I really enjoyed reading the details and having a look at what you've seen. Your blog is on my favorites, and I'll be a regular reader!

Comment on Researchers pulling back the veil on adult autism

Tamara Winfrey — Wed, 23 Jul 2008 17:33:34 GMT

I found out I had Asperger's when I was 34, & am now 37. I knew something was wrong all my life but I didn't have a clue until my niece was dxed with it. You could have knocked me over with a feather when they told me I was on the autism spectrum. I have lost jobs because of this, and even though my family knows, it's still difficult to make them understand that I don't want to do the things they want to do. I go through life never knowing when I'm going to hurt someone's feelings, offend someone I care about or make someone angry, all unintentionally. They get upset because I don't want to do things like go see fireworks, even though they know I can't take the noise and flashing lights. I have meltdowns during holidays because it's too much stimulation. Being a woman with this just makes it that much more difficult. I'm supposed to be bubbly, outgoing and all that. Nobody understands why I can't bond with other women, and women are hurt when I don't want to do girls night out types of things. I hand-code HTML for web pages and I wrote a novel-- I'm working on my second novel now-- but I can't schmooze customers to do websites full time, and I can't pitch the book to a publisher or get an agent to listen to me. I want to contribute to society, but society won't let me because I can't communicate their way. Worst of all, they see me as a genius and that only makes it more difficult for them to understand why I can't simply adjust. I can't find a doctor who will listen to me because they all see autism as Dustin Hoffman rocking back & forth in a corner reciting a phone book. There are 2 kinds of neurotypicals-- those who have written me off as hopeless, and those who don't believe anything is wrong with me even though they whisper about what a weirdo I am behind my back. Then there are idiots like Michael Savage who think I'm faking this to get disability or something. I don't want disability-- I want to be given a chance by people who accept me for who I am. Knowing that I have Asperger's is nice because I know that this is just the way I'm wired, but at the same time it underlines the futility of me trying to be heard and understood. I can't find any resources out there to help adults; all the specialists and organizations seem to be dedicated exclusively to children. If there were just an organization that matched adult Aspies to employers and schools looking for our skill sets it would be a great help, but there isn't, and I don't think I could do it by myself. If you're an adult it seems that it's too late for you and you have to sink or swim. I'm afraid that any results of this research will come too late for people like me to benefit from it. I am definitely not a kid any more, but I don't understand why this seems to preclude me from getting any kind of help. You may not be able to fix my social skills, but it would be nice if you would give me a chance to fix your gadget. The things we we CAN do might surprise you.

Comment on I am miffed! REALLY miffed!

Saille — Sun, 20 Jul 2008 18:43:18 GMT

That is absolutely HORRID!! I had a shrink do that to my son as well. I call him a shrink because I don't feel he deserves the right to be classed with real professionals that know how to act like one. Al had to see him for his disability determination. Al chose to have me with him (he also has seperation anxiety... REAL bad) and, after about 30 minutes of this guy asking fairly basic questions, he looks at my child and says "I don't think your son has anything wrong with him other than he's a smart ass." :O My jaw hit the floor. He continued on to say, "He's your typical class clown looking for attention and he needs to learn self-control." I've come to realize in the past 10 years of my child's life that arguing with these idiots is pointless. I got my child and left, thinking his determination just went out the window when he really needed the medical care and, what with my being disabled from complications at his birth and me being a single mom, that was devistating.

There apparently wasn't anything to be concerned about though because his medical records proved beyond any doubt of his disability and he's now getting the help he needs. I couldn't let that jerk's comments go though. When I went to Social Security to manage Al's paperwork I made certain to file a complaint with them regarding that "expert's" inappropriate behavior. The case worker was shocked and appalled by how the man treated my son and I was assured the matter would be dealt with. It gave me a little peace of mind to think that there was some chance that he would be kept from treating any other kids the way he did my child and I didn't have to waste my breath on a jerk like him who would've gained nothing from my losing my temper anyway. As you said... it's like spitting in the wind.

Really though, if it was a private practice there's not a lot you can do but if it was a clinic there's alway someone higher up looking out for the bottom line. Talk to them, if only for your own peace of mind, and perhaps you'll be saving another child from having to be treated so inappropriately. Good luck to ya'!!!

Comment on The Next Generation

Saille — Sun, 20 Jul 2008 18:41:01 GMT

The doc problem first came to me with my son's pediatric neurologist that tended to his care immediately after his birth. He and his rehab staff kept saying that Al's little quirks they noticed in therapy sessions were nothing of real concern... just "red flags" we would have to keep an eye on. It frustrated me because I KNEW something wasn't quite right but everything I asked them about ended up being shoved aside, insinuating that it was all in my head. It took one of his in-home therapists to encourage me to get a second opinion to find a top pediatric neurologist who could explain it to me. My son, by then 2 yrs old, was in his office for all of 10 minutes before he told me he had "the mildest CP 'he'd' ever seen". I didn't even know what "CP" was. I was crushed, not at finding that my child had CP but that two very important, very valuable years of development were past and he could've been getting better, more effective care that whole time.

Since that day Al has had a miriad of diagnosis added and we're taking one day at a time but I have to say that his pending teen years, lurking ever-so nearby, is a frightening thought. I have to give it to you, Lori-Ann, you're one brave soul and you have my complete respect. It's good to see other parents who are going through this who are willing to stand up to doctors, schools, businesses, and anyone in general who would get in the way of their child having every possible chance at as normal a childhood/life as any other kid their age.

What really blows my mind are the parents (and I'm sure you know at least one) who's children have blantant signs of such disorders and choose to ignore it... calling them "hard headed" or "in need of a good butt warming". I have a relative like that and it drives me nuts. Their kid is showing similar signs that mine shows in regards to Asperger's behaviors but he also has a serious defiance disorder. They say he has ADD and give him Adderall only when he's going to school... and that's just so he won't be expelled from FRIST GRADE! The rest of the time he suffers being yelled at and unfairly (overly) punished for behaviors that he cannot control. I mean, when a little boy cries and tells you he can't help it and he doesn't feel "right" when he isn't taking his medicine, perhaps it's time to seek a specialist for proper testing rather than your small-town family doctor that knows little to nothing about such matters. Grrrr! I just wish all kids with these problems could get the help they need. It's so frustrating.

K.... enough with the venting about that. Good luck with your teen and you're right... we'll just keep doing what we do. Good mom's do that. :)

Comment on The Next Generation

Lori-ann — Thu, 19 Jun 2008 08:03:09 GMT

Hello Saille,

Thank you so much for your input!

My son K also has Cerebral Palsy and is deaf as well as having the Autism diagnosis.

My other son, J is diagnosed with Asperger's. I have to concur with the many other parents that report seeing a change in the child after the MMR. In those days, I knew nothing about Autism Spectrum Disorders. I think I had heard my Mom mention one friend of hers whose child had Autism and she didn't live at home with her parents. J was diagnosed at age 12 with Asperger's. The diagnosis would have come earlier if the pediatrician that he was referred to at age 9 had actually listened to me when I said "No, he doesn't have ADHD, his issues are related to socialization not attention". She said, "That may be, come back to see me when you are ready to medicate him". Needless to say, we haven't been back to see her! It took another three years to get the diagnosis. Most of that time was spent on waiting lists and doing testing. So much wasted time. At this point we are dealing with a 15 year old that has not had near enough intervention/therapy and in somewhat typical teenage fashion resists anything that "Adults" suggest in way of assistance eg: IEP accomodations at school.

Well. we just keep on keepin' on...

Comment on The Next Generation

Saille — Thu, 19 Jun 2008 07:29:46 GMT

I made use of every resource I could get my hands on when my son was born because he was, technically, still-born and had to be resussitated twice in a span of 30 minutes after his birth via c-section. I, too, was on top of every eventuallity regarding the brain damage caused by his birth and, I have to say, Autism never crossed my mind. A close friend asked me if he had Asperger's Syndrome about a year ago and I had no idea what he was talking about so I researched that as well and, after having to push three of his specialists about it, he was tested and confirmed to have Asperger's. My point? I find it astounding how much information is available to those who seek it, and a bit over-whelming sometimes too. I've found, also, that doctors don't like for us, as parents, to be informed. The don't like having their diagnosis or treatment plan questioned but, frankly my dears, I don't give a hoot! That's my baby and I'm going to do all in my power to protect him from any further harm and that includes harm from the medical community. They nearly cost me his life once. It won't happen again.

What I find difficult to deal with at this point is the idea that the very immunizations that were meant to protect my child could be partly (if not completely) to blame for his Asperger's. He has mild cerebral palsy and his doctors believe that the brain damage he suffered is more likely the cause of his Asperger's but I have to wonder, after what I've been reading, if his weak condition and ill health at birth might have made him more susseptible to the negative affects of such immunizations. It seems to me that kids who started out in the NICU tend to be more prone for such negative effects later on, but perhaps that's just how I'm reading it. Regardless, I do wish they would study it more closely, especially given the higher rate of Autism occuring in our children. More kids than ever are being diagnosed every single day. I'd like to know, once and for all, WHY this is happening. It just breaks my heart.

Anyway... thanks for sharing your experiences. It's good to know that we're not alone in dealing with this quirky little world that is my child's autism and CP and it makes HIM feel better knowing that there are other kids out there, just like him, who are so very special in so very many ways. Bless them all and bless you!!!

Comment on Your IEP Action Plan

Lori-ann — Sun, 25 May 2008 13:58:12 GMT

Great input. Thanks for sharing the idea! As parents, I find we muddle around a lot trying to figure out ways to "teach" others about our kids.

Comment on Your IEP Action Plan

Jessica — Sun, 25 May 2008 13:54:13 GMT

Here's is a tip I heard about in a meeting of Disabilities Services coordinators for a number of Universities and Community Colleges in Pittsburgh:

If you have a child who is a Junior or Senior in high school and you are tracking them for a specific community college or university, invite the Special Education Coordinator (or whatever they are called at that school) to one of your IEP meetings. This allows them to get an idea of how your family works, what the child's educational environment has been and and current development are. This allows your family and their office to work much more efficiently and smoothly to make your child's post-secondary school experience as successful as possibly. This is a great post!

Comment on Let's talk about sleep, baby!

Saille — Sun, 25 May 2008 14:02:51 GMT

Thanks for that info. My Aspie is 10 and we've had exactly ONE full night of sleep since his birth. His Dr. shot down the idea of melatonin because of a fear that it would contradict some of his other meds but an Epsom Salts bath??? I'd never heard of that or thought of it. ANY suggestion is worth a shot about now. Here's hoping for any dreams... but sweet ones are more than welcome. ;)

Comment on I am miffed! REALLY miffed!

Ariane — Mon, 10 Mar 2008 00:16:24 GMT

Did the psychiatrist give you any reasons why he/she disagreed with the diagnosis? I can't believe this "professional" made such a comment in front of your son! I would be enraged!!!