Wednesday, November 9, 2011

Explaining Personal Space to Your ASD Child

As with so many things related to ASD, there is a wide range of behavior when it comes to personal space and touching. Some kids don't want to be touched and they certainly don't want to snuggle. Others (like my son) have no understanding of personal space or inappropriate touching. He's still a snuggler at the age of ten, though, so it's not all bad. :-) We just have to teach him what is appropriate and what isn't.

When someone doesn't understand personal boundaries, they often annoy those around them by standing too close, touching too much or in the wrong places, or hugging inappropriately. I remember having J in Sunday School class/nursery at church when he was 18 months-2 years (long before I had even heard of Asperger's). I was in there with him during that time as a teacher, along with several other parents. (We had a 2-1 ratio and it was a big class.) J would hug the other kids, but then not let go and they would end up both falling over. Or the other child would get tired of the game and want loose. I would have to go pry J off the other child. Most of the other teachers were also parents of children in the class, and they just thought it was cute and sweet. No one was ever hurt.  I used to say, "It's a hug for about five seconds. After that, it's assault." (Actually, I still say that.) Well, what's funny at the age of two isn't so funny at the age of 15 or 20. So I'm always trying to teach him what is appropriate behavior so we don't end up with a serious problem later.

Friday, October 14, 2011

What About the Boy? A Father's Pledge to His Disabled Son Book Giveaway

I'm giving away a copy of What About the Boy?: A Father's Pledge to His Disabled Son by Stephen Gallup on my other blog. This is a great story that "chronicles a family's rejection of hopelessness and their pursuit of a normal life."

Tuesday, September 20, 2011

Because Every Day is an Adventure...

Yesterday J had his psychological evaluation with the school psychologist to see if he qualifies for an IEP. Her office is an hour away on the other side of Atlanta, so we had to get up early (for us) in order to get Little Brother to my friend's house before we left. The testing was to take about two hours and I knew that LB and I would both be much happier if he were occupied elsewhere. Preferably somewhere with toys. Another homeschool mom volunteered to watch him for me, so I left him on his own for the first time. I've left both boys with someone (other than their dad or brother) once or twice, but never LB alone. He was not enthusiastic about going, and J didn't really help. Being a worrier, he kept bringing up things that could go wrong. Fortunately, he didn't start that until we pulled into the driveway, so I was able to get LB out of the car before he got upset and panicky. J stayed in the car while I took LB in and after a few minutes, I left, with no tears in sight (from either of us.)

In the five minutes between my friend's house and the interstate, J managed to spot a spider. Have I mentioned that he's terrified of spiders and bugs? So, someone screaming while you're driving down the road is always nice. He refused to kill the spider, but by the time he told me that, we were already on the interstate. And it was on his window, but not in a spot where I could just roll down the window and let it out. I'm still not real clear on exactly where it was, but I think it was on that little "wing window" area at the back part of the window. Except these days, those windows don't open. So he spent the entire hour ride staring at the spider to make sure it didn't attack instead of playing his DS.

When we were about ten minutes away from the office, my phone rang. It was a friend who has recently realized that her son is autistic. She was having a really rough day and although I did listen for a few minutes, I felt bad that I didn't have more time to talk to her. We all need someone to listen on those days when we're just totally overwhelmed with everything.

Just as we pulled onto the street where the office is, J yelled, "Roll down the window! Roll down the window!" So, I'm on the phone, driving, watching the GPS, and trying to operate the power window. (I only have two hands. I think moms should be granted an extra arm and hand each time we give birth.) That was interesting, but the spider was gone and I didn't run into anything.

While J was having his evaluation, I got to fill out paperwork. I filled out five different questionnaires. Several of which were the same as those I filled out for Brain Balance. (Just something to keep in mind when a doctor tells you that the Brain Balance centers don't do proper evaluations. I'm just sayin'.) It took me over an hour to fill all that out. Fun stuff.

We won't get a full report for a couple weeks, but Dr. Wells did talk to me for a few minutes before we left. She said J's vocabulary and language skills are off the charts and that he is exceptionally bright. Yes, thank you. We knew that already, but it never hurts to hear it from someone else.

I can't even remember the last time we ate at a fast food restaurant, but we were hungry, an hour from home, and I wanted to give him a little treat for putting up with the testing. He wanted to go to Chick-Fil-A, so I punched Chick-Fil-A into the GPS. Turns out we were right around the corner from one. "40 seconds" away, to be exact. That was pretty entertaining. We've never been 40 seconds away from anything before. Even at less than a minute, I would have expected it to read, "1 minute," not 40 seconds. I even took a picture and posted it on Facebook.

I was so focused on the whole GPS thing that I didn't remember why we haven't eaten at Chick-Fil-A in a while. They don't have anything that doesn't have batter. Batter has eggs. I didn't even think about it until we had already ordered. They were already making our order, and it's not as if it's a life-or-death thing, so I just let him eat the chicken strips. His dad had fixed him a salad the previous evening with bleu cheese dressing anyway, so it's not as if he didn't already have eggs in his system.

On a side note, I decided this morning to let him go back to eating eggs. It's been several months, and we've done really well, with only three or four infractions (and two of those were this week), but we haven't seen any changes. I know not all sensitivities manifest in physical symptoms, but I would rather he eat eggs and hashbrowns or homemade pancakes for breakfast than the crappy cereal his dad has started buying - pretty much because it's so hard to find something decent J can eat for breakfast (that he will eat) without eggs.

So we're driving down the interstate eating waffle fries when J screams again. His spider's twin was on my little storage console thing between my front seats. I grabbed a napkin and squished it. (Sorry, spider lovers, but I was driving 70 miles an hour with a phobic kid in the car. I had to take drastic action.) I put the napkin in my trash bag between the seats. Everything is all happy and greasy until a few minutes before we get off the interstate. "A spider just went into your console thingy!" Oh, for pete's sake. Either we have an infestation or we have a zombie spider.

When we got to our exit, I pulled into a gas station parking lot and pulled everything out of the console. Killed the spider. Again. Or whatever. Probably should have done the "save the spider" thing, but honestly, I was a little freaked out at that point. Threw the napkin and the squished spider into the gas station trash can. So the zombie spider is someone else's problem now.

I put everything back into the console and we went to pick up LB. He was happily playing with Play-Doh and hadn't cried at all. Glad he missed us. I told him to thank his little friend for sharing her toys. He did, and the first thing he said to J when he got in the car was, "R shared." LOL Then he said, "My seat smells like chicken nuggets." We had thrown the trash away when we stopped, and I had the windows down, but I guess you can't slip anything by that one. Fortunately he didn't pursue it.

We then went to the park for our homeschool group's regular park day. Where most of us sat around talking about our spectrum children. I did get to hear two moms who are new to the group tell me that their sons, who had come to park day for the first time last week, had specifically mentioned at home that J was nice and had made them feel welcome. Hello, warm fuzzies. :-) He's pretty good with some social stuff. He just doesn't understand when someone is through listening or ready to move on, and he just keeps on with his own thing.

Then we met another mom who isn't part of our group (her son is in regular public school), but has an autistic son. So we talked for a while, and I got some useful information and a new Facebook friend.

So, I was thinking that it really sucks that there are so many of us. And frankly, I'm not thrilled with being one of "us". But no one asked me before I was volunteered for this club. So we'll share information and stories and shoulders because none of us can get through it alone.

Monday, September 19, 2011

Book Giveaway - Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal

I run a weekly book giveaway drawing on my other blog. This week's book is Seeing Ezra by Kerry Cohen.  Hop over and enter. It's very easy. Just leave a comment. (On the other blog, please, not here.) It's a great book and I'd love for one of you to win it. Just go here to enter.

Tomorrow, I'll post about our adventures in IEP land, including a spider hunt.

Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal

Thursday, September 8, 2011

Seeing Ezra by Kerry Cohen - Book Review

I usually do my book reviews on my personal blog, but I was actually asked to review this book on this blog. If I didn't think it was worth sharing with you, I wouldn't, but I do, so I am.

Amazon summary
Seeing Ezra is the soulful, beautifully written memoir of a mother’s fierce love for her autistic son, and a poignant examination of what it means to be “normal.” When Kerry Cohen’s son Ezra turns one, a babysitter suggests he may be “different,” setting her family on a path in which autism dominates their world. As he becomes a toddler and they navigate the often rigid and prescriptive world of therapy, Cohen is unsettled by the evaluations they undergo: At home, Ezra is playfully expressive, sharing profound, touching moments of connection and intimacy with his mother and other family members, but in therapy he is pathologized, prodded to behave in ways that undermine his unique expression of autism.

It soon becomes clear that more is at stake than just Ezra’s well-being; Cohen and her marriage are suffering as well. Ezra’s differentness, and the strain of pursuing varied therapies, takes a toll on the family—Cohen’s husband grows depressed and she pursues an affair—all as she tries to help others recognize and embrace Ezra’s uniqueness rather than force him to behave outside his comfort level. It isn’t until they abandon the expected, prescriptive notions about love, marriage, and individuality that they are able to come back together as two parents who fiercely love their little boy.

Powerful and eye-opening, Seeing Ezra is an inspirational chronicle of a mother’s struggle to protect her son from a system that seeks to compartmentalize and “fix” him, and of her journey toward accepting and valuing him for who he is—just as he is.
Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal
My review
I'm learning that the more personal a book is to me, the harder it is to review it. Seems like it should make it easier, but it doesn't. I don't totally agree with Ms. Cohen on some things, but that doesn't make the book any less impactful. I finished this book four days ago, but I couldn't find the words to write a review.

At first, I found it hard to relate to her because when she first started seeking help for her son, she didn't want anyone to think badly of him, so she didn't tell the doctors and therapists everything they needed to know to properly evaluate him. I'm a straight-up kind of gal, and I figure that even if the "experts" don't have all the answers, they can't help us if they don't know what's going on. Eventually, though, she moved past that. She came to a point at which she could tell the doctors everything, but she didn't hesitate to get up and walk out if their needs weren't being met. That's my kind of mom.

The question Ms. Cohen keeps repeating in her book is one that I think every parent of a special-needs child faces. It doesn't matter what your opinion is on alternative therapies, or curing autism. The most important thing is: Where is the line between helping him with the areas where the world feels hard for him and negating who he is?

There is some foul language in this book, but don't let that stop you. It always helps me to read about how other moms are dealing with challenges. Not only do I usually learn something, it helps me to not feel so alone. (No matter how much support we have, I think sometimes we all feel like no one else knows what it's like.)

About this book
Title: Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal
Author: Kerry Cohen
Publisher: Seal Press
Release date: August 30, 2011
Pages: 288
Where I got this book: I received this book for free from the publisher in exchange for an honest review.

Thursday, September 1, 2011

What About the Boy? by Stephen Gallup - Book Review

I write book reviews for my personal blog, and I recently received a wonderful book written by the father of autistic child. (Actually, he is no longer a "child", but during the time detailed in the book, he is.) I wanted to share it with you here. If you're reading this blog, there's a good chance you've already decided that there may be more solutions out there. This book is about a family who made extreme sacrifices to get their son the treatment he needed.

From the back cover
Nobody knew what hurt little Joseph. Perhaps some toxin had invaded his mother's body before his birth. Perhaps it was the difficult birth itself. Or maybe the origin of his disabilities was genetic. Whatever the cause, something had gone terribly wrong — but no one was offering solutions or reasonable guidance.

He cried most of the time, and thrashed about as if in great pain. He wasn't learning how to crawl, talk, or interact normally. His parents sought medical help and were told at first not to worry so much. Later, the professionals recommended counseling to help the parents accept reality. Nothing could help their son, and the quality of their own lives was at risk.

Refusal to accept that advice launched an improbable journey that changed their lives forever.

What About the Boy? A Father's Pledge to His Disabled Son chronicles a family's rejection of hopelessness and their pursuit of a normal life.

What About the Boy?: A Father's Pledge to His Disabled Son

My review
I expected this book to make me cry. I did not expect it to make me mad. As I read about the Gallup's struggle to find answers for their son, I was so disgusted by the mainstream medical world's refusal to, at first, acknowledge anything was wrong, then later, to acknowledge that someone somewhere might know something they didn't.
This is a book about being your child's advocate. It's about pushing past all the "experts" who are basically telling you, "We don't have the answers, so you're not allowed to have questions." It's about parents who were so desperate to help their son that they humbled themselves and asked for help from people they didn't even know. It is not about Super-Parents. Steve is very transparent about just how human they are.

One thing that Steve and I agree on is that every child should be allowed to reach his full potential. He mentions one father who told him that if he had to choose between his child being low-functioning but full of the understanding that she was loved completely, or a “normal” child who didn’t feel loved, he’d choose the low-functioning. Steve (and I) wondered why the two were mutually exclusive. We’re not talking about making a child feel like he is less of a person or that he is damaged goods. We’re just talking about making the effort to do what we can to help our children function at as high a level as they are capable of.

I found it interesting that back in 1989, the program that the Gallups used to help Joseph reach his full potential used some of the same methods I’ve seen in “alternative” programs in use today. Alternative programs that are working. As Steve says, “We’d seen enough to know that the answer for one kid may be unrelated to what works for another, that very seldom is any answer complete, and that there’s no escape from guesswork. The only feature the various success stories shared was a willingness of each family to reject experts who would not help.”
I did cry three times while reading the book. The first time was reading about all the amazing volunteers who had stepped up to help with Joseph's program, almost all of whom were complete strangers at the time. The second was when an Institutes staff member told the Gallups that the whole staff went out for ice cream to celebrate when they got the call telling them that Joseph was walking. At that meeting, the staff member also told them, "Joseph deserves to be told how great he is." (I'm quite sure Joseph was getting message loud and clear from his parents.) I also cried at the end of the book, but you'll have to read it to see why.

This is the story of an amazing family. Parents who were willing to make great sacrifices for their son, and a son who was strong enough to do what the “experts” said he couldn’t do. I won’t say it’s an easy read because there is some emotion involved, but it’s well-paced and well-written. I highly recommend this book to everyone, especially parents.

About this book
Title: What About the Boy?: A Father's Pledge to His Disabled Son
Stephen Gallup
Publisher: Lestrygonian Books
Release date: Sept 1, 2011
Pages: 376
Where I got the book: I got this book
for free from the author in exchange for a review

Sunday, June 26, 2011

Different, Not Wrong

I finished Be Different: Adventures of a Free-Range Aspergian almost a month ago, but I’ve been thinking about it all this time, trying to decide what to write. Robison’s latest book is as well-written and entertaining as his first book, Look Me In the Eye: My Life with Asperger's. I think I’ve hesitated to write about Be Different because I see so much of myself in the anecdotes. I see more of my son, which makes sense, as he’s been diagnosed with Asperger’s, but there’s a lot of me in there, too. Even having acknowledged several months ago that I have some Aspie tendencies, it’s still a little weird to see that many similarities. I’m what Robison calls a “Proto-Aspergian”, someone with a few Aspie traits, but isn’t completely Aspergian (Robison’s name for Aspies). Neurotypicals are “Nypicals”.
I don’t usually read other reviews before I write a review (and this isn’t really a review), but as I said before, I was at a loss for what to say. Until I saw a reviewer who had written that he didn’t finish the book because it was written just for Aspergians and their families, and that the advice seemed simplistic.
Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers
Honestly, I think everyone should read this book. I guess it’s pretty, well, simplistic, but I think if people would take the time to understand a little about others who aren’t like them, differences wouldn’t seem so scary or bad. If you’re a teacher or in any kind of profession where you’re around a lot of kids, reading this book will help you understand that not all those “bad” kids are bad. (Kids rarely are, but that’s for another post.) For those with friends or family members with Asperger’s, it really does help to read things written by an Aspergian. For Aspie kids, while they may realize that there is something different about them, they don’t really understand all the ways in which they think differently than Nypicals. How can they? It’s all they’ve ever known. That’s just the way things are for them. So hearing it from someone who is able to articulate it is helpful.
On a side note, Robison writes a lot about music, and I’m not a musician, but I think both his books would be enjoyed by musicians. (He used to design exploding guitars for KISS, in case you didn’t know.)
As for the reviewer’s claim that the book’s advice is simplistic, all I can say is that he obviously isn’t close to anyone with Asperger’s. If he were, he would know that, in some situations, Aspies really do need basic advice that sounds intuitive to Nypicals. The example the review gives is, “Manners are important even if they don't make sense. Read Emily Post.” That may sound ridiculous to many, but it makes perfect sense to me in relation to myself and my son. I think if you’re a Nypical reading the book, you can learn something if you keep in mind that the book was written mainly for other Aspergians.
You don’t have to read Look Me In the Eye first to understand Be Different, but I think it adds a perspective to the book that you wouldn’t have otherwise had. And reading in Be Different about John Elder teasing his younger brother wouldn’t be quite as funny without knowing all the tricks John Elder played on him when they were young… and knowing that even after all this time, he’s still falling for it.

Saturday, April 16, 2011

Interesting Conversation

We had an interesting conversation on the way home from the park. I don't remember every word, but I remember most of it, so we'll just go with the flow.

J (out of nowhere): How does someone get AIDS?
Me: There are several ways. Sometimes they get it from contaminated blood. Like giving shots at the doctor (there was more here; he understood I meant using the same needle for more than one patient, not getting shots in general) or donating or receiving donated blood. (which started a side discussion on blood types)
J: So they don't wash the needles in between people?
Me: No, they just throw them away and get a new one.
J: So how else can someone get AIDS?
Me: Along the same lines, people who use illegal drugs sometimes use a needle and syringe to inject the drugs into their blood. When you're using drugs like that, using a clean needle is the last thing you care about. Several people will sometimes share needles and they spread diseases like that.
J: So they do two bad things. They're using drugs and using contaminated needles.
Me: Yep.
J: So how else does someone get AIDS?
Me: By having sex with someone who has it.
J, after a minute of silence; I assume he was trying to think of what sex is: Like what a man and a woman do to make a baby?
Me: Yes.
J: So how does somebody catch cancer?
Me, happy he didn't pursue the sex thing: You don't catch cancer. It's not contagious. It's kind of like cells in your body multiplying that shouldn't be multiplying and they attack your body and your body can't fight back.
J: Like where the clones on Star Wars multiply and attack?
Me: Something like that.
He asked something else about cancer and I explained that environmental problems often cause or make cancer worse, like the chemicals in our food, the chemical cleaners we have in our houses and the pesticides on food and in the air.
J: So can you catch Asperger's and dyslexia or whatever that other thing is?
I think he was trying to say dyspraxia, but the answer is the same for either one, so I just answered his question.
Me: You're born with it. Just like with cancer, the things around us and the food we eat can make it worse, but those things don't cause it.
J, without missing a beat: Okay, so I know a decade is ten years and a century is a hundred years, but how long is a millennium?

Nope, that last question had nothing to do with AIDS, cancer, or Asperger's. Welcome to my world. LOL

Friday, March 25, 2011

Helping Our Kids with Social Skills

I have a bit of a book addiction and in order to keep from using money that could be used for other things, like food, for example, I use the library. A lot. I also get books for free from publishers in exchange for posting reviews. One of my books was A Parenting Guide for Families of Children with Disabilities: Developing Social Skills Towards Independent Living. I've already written the required review, but I wanted to share this book with you. It was written with a wide range of physical and developmental disabilities in mind, but really, except for one or two points, it could have been written specifically for kids and young adults with Asperger's. It's vague enough that you can easily apply the concepts to your family, but detailed enough that you actually know what you're trying to do.

It has four different sections, each with a worksheet-type page at the end on which to write your family's goals. The first section is First Impressions, dealing with personal hygiene. The  second is Behaviors, like facial expression and personal space. The third is Verbal Communication, including listening (if your Aspie is anything like mine, the trick is getting him to stop talking about Pokemon or dinosaurs long enough to listen to someone else) and phone skills. The fourth is Daily Living and Community Skills, like shopping, banking, and problem solving.

As with pretty much any book, you take what you need from it and leave the rest. This book will be a big help for me and I hope it helps someone else out, too.

Monday, March 7, 2011

Round 2: Week 2

No progress to report this week, but I did learn a few things.

Book reports are evil. At least they are for detail-oriented, literal children. He had a lot of trouble keeping his "summary" cut down to less than the length of the book. "Just tell me the important things," didn't help. Everything is important. And it's hard to "get" the theme or message of a story when you can't see past the story. He reads because he enjoys the story. Unless a message or moral stated clearly, he just doesn't pick up on it. Fortunately, he only had to do one book report this year and now it's done.

Asperger's is making its way around the airwaves (or whatever digital cable travels on these days). Parenthood on NBC has an ongoing storyline about an 8-year-old with AS, one of the finalists on American Idol has AS, and, although it's autism, not specifically AS that's featured, there is a UK show, Young, Autistic & Stagestruck that you can find online here in the US.

Despite that, there are still many people who have never heard of Asperger's Syndrome. I was talking to my new next-door neighbor last week and she hadn't heard of it. I missed Asperger's Awareness Day in February, but Autism Awareness Day is April 2. My hope is that more people will also learn about Asperger's on that day.

Wednesday, March 2, 2011

Does Your Child Know He Has AS?

Did you watch Parenthood last night? I recorded it and watched it this morning. Apparently I have a new show to keep up with. I want to see where they go with the story.

I couldn't really understand why Kristina cried when they were explaining Asperger's to Max. Of course, I also don't understand why they felt the need to hide it from him for a year, either. AS is challenging and frustrating and I was a little stunned when we first heard that J has AS. In fact, I had a small panic attack right before we got the results of the evaluation. But I didn't cry. And I cry about everything. In fact, I cried when Max had his meltdown in the park on the show. I felt so bad for him. And you know when that happens in real life, everyone in the park is thinking, "What a brat." Makes you want to stand there and hand out pamphlets about AS.

Anyway...AS does present some challenges, but I don't think it's something to grieve about. There are so many more debilitating issues that families have to deal with that really, in the scheme of things, AS isn't that bad. Really, it isn't that horrible taken on it's own, either. On the show, Adam was resistant to sharing any positive aspects of Asperger's with Max - mainly because Adam didn't believe there were any positive aspects. He and Kristina were both so mired in the challenges that they couldn't see anything else.

I won't pretend living with an AS child is easy. I've been pretty open about that on here and if you have an AS child, you already know how it can be. But they're also sweet, smart, funny kids.

Apparently the writers have done a lot research, because they even "got" that it's usually the dads who have more trouble accepting the diagnosis. I wanted to reach through the TV, grab Adam, and say, "Stop being so negative!"

I did like the way they eventually sat down and talked to him. I've never hidden from J that he has AS. I even talked to him about it when I started thinking he might have it. He's just so smart that it never occurred to me to not talk to him about it. It helps him understand why he does some of the things he does instead of being frustrated with himself because he can't stop. It's part of who he is, so I don't see how hiding that is beneficial.

And now I have to go back and watch the previous episodes because I'm curious how they had him working with a behavioral therapist for a year without giving him some kind of explanation.

Does your AS child know he (or she) has AS? Did you tell him as soon as you found out or did you wait? What made you decide to either tell him or keep it from him?

Monday, February 28, 2011

Asperger's on TV

Both the boys are into dinosaurs, so we watch dino-everything-we-can-find (along with getting every dinosaur book from the library). We were watching Dino Squad on Netflix a few days ago when I saw an episode I had somehow previously missed. The first episode of the second (and last) season is "The World According to Liam". The Dino Squad is a group of five teens who can morph into dinosaurs. Along with their also-mutant teacher and dog, the Dino Squad are fighting to keep mutant dinosaur/animals from taking over the world. Yeah, I know. It's not Oscar material, but it's not as bad as it sounds and it has dinosaurs.

In this episode, Liam is a teen with Asperger's who attends the same high school as the dino-teens. After the jocks make fun of Liam for his "weird" behavior, Liam explains to one of the Squad (even after all these episodes, I don't know the names well enough to tell them apart) that he has Asperger's Syndrome and that "my mom says that means I process things differently than other people." Dino-teen asks Dino-teacher later and she explains a little about Asperger's to him. Liam ends up helping the Squad take down the mutant dino-bees and after the fight, the other teens ask Liam if he'll keep their secret. Can't have everyone knowing they can "go dino", you know. He replies, "If I tell people that I saw kids turn into dinosaurs then back into kids, everyone would think I'm weird." Ironic and cute. Of course, the last scene shows the dino-teens ignoring the "popular" kids to sit with Liam in the school cafeteria.

I can't find the whole episode online, but if you have Netflix, you can watch it. They also have an episode on the Dino Squad website, and the site claims to change the clip weekly, so you may be able to catch it on there sometime. Here's a small clip of the show.

I think the writers handled it well. If you can watch the whole episode, let me know what you think. Do you think it's a good idea to introduce kids to Asperger's via a Saturday morning cartoon? Have you seen other shows that have addressed AS?

P.S. After I wrote this post, but before I published it, a friend told me that the show Parenthood has an ongoing storyline about Asperger's. Parenthood is shown on NBC at 10/9c on Tuesday nights. You can watch episodes on the NBC site or if you have Comcast cable, you can watch past episodes On Demand (for free).

Friday, February 18, 2011

Food Sensitivity Testing

I feel like this food testing thing has gone on forever. It really shouldn't have been this complicated. Since I went in without a clue, I thought I'd share my experience so you can navigate around the mistakes I made. I'm not a doctor or health care professional, and everything I know about food testing is what I have read or been told by a professional. So don't take this as medical advice, rather as advice from a mom who just wants to give you a head start when you try to help your child.

First, a quick rundown on the difference between food allergies and food sensitivities. Sensitivities are sometimes referred to as intolerances, but some books say they are actually different things. Of course, some people say "allergies" when they mean "sensitivities" (which are definitely not the same thing), so it's really a matter of wading through and finding the information *you* need and filtering the rest. Food allergies (IgE reactions) are the immediate reactions. They can include rashes or anaphylactic shock, but they are not always so severe or noticeable. These allergies will not go away and will test positive even if the food has not been eaten recently. Sensitivities (IgG4 reactions) can cause delayed reactions, which is what makes it hard, even on an elimination diet, to track the problem foods. In order for sensitivities to test positive, you must have eaten the food recently. Obviously, you don't want to eat something you have a known reaction to. You already know to avoid that. Sensitivities will lessen or disappear completely if the food is strictly avoided for a period of time. I'm finding different time frames on when to try reintroducing the trigger food. From six months to a year. That would be something to talk to your doctor or a nutritionist about.

Now for the drama. I'll try to stick to the condensed version. :-)

After a bit of spinning in circles and getting my bearings, I called an Alternative Health practitioner who was very helpful on the phone. I already knew that there is a difference between classic allergic reactions (IgE) and food sensitivities (IgG4). There are different tests that serve different purposes. The practitioner to whom I was speaking uses tests from Metametrix Clinical Laboratory, which also happens to be the lab used by Brain Balance. As far as I can find, Metametrix has an excellent reputation, so I would suggest finding a professional that works with them or with another reputable lab for your testing. I do not recommend the route I took, although you may have a better experience than I did.

If you already have a doctor who is open to the idea of alternative treatments, talk to him about your concerns and your research and see which tests he recommends. The testing we decided on was the Food Allergies and Sensitivities test (IgE and IgG4). There is also a TRIAD profile that is apparently used for ASD children, but it doesn't test for as many foods, and since that was my focus at this point, I went with the allergy test.

So the phone call was very helpful, no-pressure. He gave me the prices for the tests ($346 for the allergy test and approx $500 for the TRIAD), as well as explaining the differences between the tests. Here's where it all goes south. A month or so later, we finally decided we could afford to get the test done. I called the very helpful practitioner to find out what we needed to do to get the test done. I was told that we needed to come in for a consultation to verify that the correct test was being ordered. The consultation would cost $45. Okay, fine. Except that no new information was passed from either party during said consultation. So I'm a little baffled about how helpful the (free) phone call was. You give away information for free, then charge for nothing? Whatever. We get the kits and the order to take to the lab so they'll draw the blood and process the test... Oh, yes, and by the way, you have to drive an hour to the lab and pay $25 to have them draw the blood.

Okay, so we're up to $70 over the initial $346 quoted for the test. (More if you add the cost of gas, but we won't go there.) I get ready to pay and the total is almost $30 higher than I expected, even after the consultation fee was added. When I questioned the total, I got the oh-so-casual response, "Tax on the kit." Well, okay, then. So you couldn't tell me that over the phone when I asked about the price of the kit? So the $346 test would actually be closer to $444, almost $100 more than I was originally told. I was a little irked. If you've read my other posts, you know I don't do "irked" well. I can see the need for the consultation, when the doctor (the person I talked to on the phone is not a doctor; I'm actually a little fuzzy on exactly what his title or job is; there was an actual doctor on hand for the consultation) is writing what amounts to a prescription, and I was told about that before I chose to drive over to the office. However, I did not appreciate the other extras that were casually thrown at me when it was time to pay.

I promised the condensed version, didn't I? Sorry... I ended up not getting that test. I did pay the $45 for the consultation, but chose to skip the rest of it. The lesson here is always ask if there are any other costs associated with the test. I didn't know what to ask.

Although I had searched online, I had not found a site from which I could order a test to do at home. Either I wasn't using the right search terms, or there is some really poor SEO at play. I accidentally came across when a friend sent a link about food sensitivities to one of my homeschool groups. Their test tests for 96 food allergens and candida and only costs $329 plus $9.95 shipping. That's it. No surprises. Well, not on the money end, anyway.

Their FAQ states, "Once you place your order with us, we will immediately ship you your Food Intolerance Kit.  You can expect to receive it in the mail within 7 to 10 days."  I placed the order on Dec 21. I expected there would be some delay due to the holiday. I didn't get an email telling me that my order would not ship until January, and there was nothing on the website stating that the office was closed for a long holiday. It actually wasn't even the holiday yet. On January 5, it occurred to me that it had been much longer than 10 days. On January 6, I emailed again, and I was getting a little testy. It had been 17 days since I placed my order and I hadn't heard anything from them. About 30 minutes later, I got an email stating that my order had been shipped on January 5 and that the office had been closed for the holiday. They were apologetic and said if I notified them when I returned the blood sample (easily done at home, by dropping blood on a sample card, without the $25 draw charge), they would expedite the results.

I got an email on Jan 25 saying that my sample had been received. I don't know if they notify everyone or if annoying people get special treatment. At the time, the FAQs said that the results were usually back in about two weeks. I expected the test to take at least 10 days. I don't think it's stated on the Allergysmarts site, but the Metametrix test is a 10-day test, so they can check for delayed reactions. I assume Allergysmarts does the same thing.  On Feb 25, which was two weeks and one day after they got my sample, I emailed asking about an ETA. I mentioned that non-expedited results only take two weeks. So why was mine taking longer? That was a Wednesday. "Your results are expected back tomorrow." If "tomorrow" is the same as late Friday afternoon, then they came back right on time.

When I finally got the results, they came with this message, "The usual turnaround time is around three weeks, so I apologize if this took longer than that." I suggested they change their FAQ to reflect that, and strangely enough, they did. Now it reads, "Once the laboratory receives your sample, results are usually available in about 3 weeks.   Note that reporting may be delayed after Christmas, Easter and Thanksgiving holidays." Score one for the squeaky wheel.

Part of the "package" is a 15-minute phone consultation with a nutritionist. Although we got the results on Friday, I didn't talk to the nutritionist until Wednesday. Because he's in Dubai. And aside from the time difference, he can't make phone calls if his internet connection is down. No, I don't know why they're using a nutritionist in Dubai. He did seem to know what he was talking about, though. I didn't get any new information from the conversation. The test only showed two trigger foods, eggs and milk (which explains why the gluten-free experiment failed; everything I made had eggs in it), so maybe if you have several trigger foods, or if you're not as big a nerd as I am, the consultation would be helpful.

The lesson here is sometimes things go bizarrely awry. I checked the BBB site before I ordered from Allergysmarts and they don't show up there at all. They are probably just fine if you don't try to order a kit near a holiday. I'm not saying not to use them; I'm just saying be aware that things may not go as smoothly as if you work with a local doctor. They do have some useful information on the site, though, so if you want to learn more about how food sensitivities can affect your health (not just for ASD folks), check it out.

I know what you're thinking. I did promise the condensed version... And sadly, this is the condensed version.
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