Book Review: Next Stop

So, a couple of weeks ago I was checking my email and one caught my eye... "NEXT STOP: A Memoir (advance review offer for you)". I almost deleted the email, figuring that it was a spam that hadn't been caught by Google's Gmail filters or some such thing. But I read the email, and then did some research. This was a real person (the author is Glen Finland) with a real child (now an adult) who has autism and she'd written a book and it was being published, to be available on March 29, 2012. After reading the description about the book on Amazon's website.......

"The summer David Finland was twenty-one, he and his mother rode the Washington, D.C., metro trains. Every day. The goal was that if David could learn the train lines, maybe David could get a job. And then maybe he could move out on his own. And then maybe his parents’ marriage could get the jump-start it craved. Maybe. Next Stop is a candid portrait of a differently-abled young man poised at the entry to adulthood. It recounts the complex relationship between a child with autism and his family, as he steps out into the real world alone for the first time, and how his autism affects everyone who loves him."

I was hooked. I knew I had to read this book. I emailed the person back and asked a couple of questions (I always ask how people find my blog) and what I would need to do. Basically, all I had to do was provide my mailing address (so I could receive the book) and once I was done, give my input on the book and post a review on my blog.


I received the book a few days later and I started to read it almost immediately. I was hooked upon reading the first chapter. I felt an immediate kindredship with Glen and her husband Bruce, as they raise their three sons, one of whom has autism, David. I remember posting on Glen's Facebook page a few days later that "I was hooked, link and sinker" and that I had been giggling and had tears in my eyes throughout the parts of the book that I'd already read.


In the world of autism, parents oftentimes feel alone. Glen's story-telling and style of writing lends her writing to make you feel like you're a part of what is going on in the story, or at the very least, observing it first hand. The stories, while different than Ashton's stories, so similarly mirror some of our own experiences, that I kept saying "yep, I've been there, done that and earned that badge too!" You can't help but fall in love with the family and their experiences, as you feel like you're right there.


The majority of this story revolves around Glen and David's adventures one summer, of teaching him how to ride the DC metros. If he can learn to ride those, he can learn to get back and forth to a job and maybe even someday, live independently of his parents. The process of teaching him how to ride the metro lines takes an entire summer. You also get excerpts of his early childhood and how his "different abilities" kept him from interacting appropriately with his family and the environment around him. I loved hearing about these small stories and steps of how the Finland family overcame the issues that come with raising a special needs child.


One such story that stuck out in my mind, was when Glen was talking about David's first "solo" ride on the DC metro. She had asked him to wait for her at the turnstile as she needed to put more money on her fare card. Well, he went on ahead and she lost sight of him pretty quickly. I've had that happen! Not that exact scenario, but I've lost sight of Ashton before and your heart literally drops from your chest down to your stomach. It's a sinking feeling, knowing that your child that doesn't communicate well (if at all) with others is out there and "alone". I literally remember gasping at that moment in the story, remembering my own similar experiences.


Throughout the book you are introduced to those closest to Glen, her husband Bruce and their three sons; Eric, Max, and David. You see how their lives change as David's diagnoses change or as he adds new ones. The dynamics of the family change as they center their lives around dealing with their son's disability and how to help make his life easier and better. It's a hard balance to strike and one that is ever-changing with the needs of all family members. I completely commiserate with Glen and Bruce on how this affects their other two boys as well as their marriage to each other.


Finally, this book wraps up with talking about David and his love of running, and him running in his first Marine Corps Marathon in Washington, DC. It's October 2009. Glen's description of the day and what it means for her family and most of all, her son David is awe-inspiring. He'd literally spent his entire life, metaphorically speaking, training for that very day. Training and going on long runs on his own. Having to let him go and do this on his own is a milestone for Glen and her family. They can't eagle-eye every moment of his life anymore, as David is learning to spread his wings and be an independent young man, which is something all parents want for their children, disabled or not. Not only does David do the race, but he finishes and completes the race with a time of three hours and fifty-two minutes. This part of the story is the one that moved me the most. Watching her son participate in an activity he loves and completing it to the cheers and admiration of others. I'll admit it, I teared up. I know that feeling. Watching your child doing something they enjoy. Having others cheer them on - it's a glorious feeling of belonging and understanding. Having your child feel accepted, accomplished, admired and most of all, loved by others is the ultimate "happy" feeling.


All in all, this is a book that I highly recommend. Not only for those parents of children with autism, but  for anyone who knows and loves someone with autism. This story of hope and guidance is uplifting and inspirational. It's true to life and it's beautiful. But most of all, it's very well-written and keeps the reader engaged and on the edge of your seat. Truly is one of my very favorite books that I've read in a long time. I feel blessed and truly honored to have had the opportunity to read and experience this book before it was made public.


Thank you to Glen and her family for sharing your memories and life with all of us. It's a book that everyone should be anxious to read, I truly enjoyed reading this book and getting to know this family.
--- Jenn



My review is based on the advanced review copy of this book that I received. I was given no compensation for this review and the views listed here, are my own. This book will be available for purchase on March 29, 2012.

Using his words.... more and more!

You know..... I actually love getting phone calls from Ashton's teacher now. I'd dare say I get more phone calls now from Ashton's teacher than I ever did before. But there's one major difference..... the positivity of this teacher versus the old one! I mean even when she's calling with a concern and/or question, it's not laid out to be a life and death situation. I have only once been called to come get Ashton from school, and that was last week, and not for a behavior problem but because he was sick. He was fine about leaving the school building until he realized we were going home, "Can I go back into the school Mom?" Ahhh.... poor dude! Luckily he felt much better the next day (no fever or throwing up, just a general feeling of malaise) and was back to school in much better spirits.

Last night even, was funny as heck... he burst into tears because "I miss Ms D. I want to see her. Can I go to school?" - mind you, it was bedtime but wow! He was completely distraught! Good thing he was back to school this morning! It shows how happy he is at this school and how comfortable and attached he is!

He's even finally starting to comply with his work. I mean, he's not 100% successful at it yet, but he's come a long ways from where he was back in November when he first started at this school. And to think, it's the same type of class placement, just a different school (with different staff and administration to boot!). Amazing how the right person(s) can make all the difference in the program.

And to get to the point of this post.... Ashton is using his words, so much more these days. He's using them more in written work (as evidenced by my last post, lol) and is talking more and more in school and the jargoning/babbling is much, much less. In the classroom he's apparently talking quite a bit - to everyone! Teachers and classmates alike! He's aware, he's conversing, he's socializing! This is a huge step forward for him! Apparently, another teacher (Coach B) came in to Ashton's classroom earlier this week. Ashton, as a way to avoid doing the task the teacher was trying to get him to do, jumped up and said "Coach B, I really need to talk to you!" ;) :D STINKER! He knew what he was doing and giggled and clapped and was in general being silly. The teacher told him to stop avoiding his work and he went and sat back down to continue on with his work. The Coach was astonished! He'd not really heard Ashton talk, in a conversational/social way before! YAY! My boy is letting himself and his words BE HEARD!!! :)

Anyways .... he continues to do very well and we're very, very proud of him. Can't believe in about 6 weeks he'll be a teenager! A teenager?!? Yikes!! that's a scary prospect!

Have a great night all!

A glimpse inside his mind......

So...... hubby installed some proxy thingamajiggy on Ashton's tablet, since he's been watching some rather ummm... risqué videos on YouTube. We want to see what he's watching and possibly block any inappropriate stuff. Most of what he's searching for are pretty benign and it's actually an amazing glimpse into what's going on in his head.

He mostly searches for movies he's already seen. Most movies can be viewed on YouTube in 5-10min increments and you can bounce from clip to clip for each movie after viewing one, since usually the suggestions contain the others. (I didn't know that before Ashton became a YouTube aficionado).

Lately though, he's started watching "older" stuff (remember, he is almost thirteen now); like James Bond (the older ones), Commando, etc. He loves action movies (obviously) and movies with super heroes and comic book characters, Superman, Batman, Iron Man, Hulk, Captain America, etc. Like I said, most is pretty benign..... but boy, some of what he watches (which I can't even identify) is a bit um.... much.

Anyways, as part of the proxy thingamajiggy, the hubby can see exactly what Ashton's typing in the search box on YouTube. Well, imagine his surprise when he found this search string in the logs.... (only edited once for the cussword my son included in this string.... otherwise, this is purely his typing, spelling, spacing (or lack thereof) and thoughts).

YOUWONTBECOMEINGBACKANDYOURNOTARETARDANDYOURNOTANIDIOTANDIAMSORRYFORBEEINGARUDEANDIAMNOTAGIRLANDIAMNOTFUSSEYANDIAMSORRYFORBEEINGMEANANDIAMSORRYFORBEEINGRUDEANDIAMNOTAFUSSEYWIDGEITANDIAMNOTAFUSSEYBOYANDIDONTHEARMEANDANOMAMANDNOTFORLONGANDNOTFORERUININGMYSHIPYOUSONOFAB*TCHANDTHISGUYISBIGANDTHEBLACKANDTHEPURPLEANDTHEGREENMONSTERTRUCKISBIGANDHISNAMEISGRAVEDIGGERANDHEWENTCROSSTHEFINISHLINEANDHEWINTHERACE

translated......

YOU WONT BE COMEING BACK AND YOUR NOT A RETARD AND YOUR NOT AN IDIOT AND I AM SORRY FOR BEEING A RUDE AND I AM NOT A GIRL AND I AM NOT FUSSEY AND I AM SORRY FOR BEEING MEAN AND I AM SORRY FOR BEEING RUDE AND I AM NOT A FUSSEY WIDGEIT AND I AM NOT A FUSSEY BOY AND I DONT HEAR ME AND A NO MAM AND NOT FOR LONG AND NOT FORE RUINING MY SHIP YOU SON OF A B*TCH AND THIS GUY IS BIG AND THE BLACK AND THE PURPLE AND THE GREEN MONSTER TRUCK IS BIG AND HIS NAME IS GRAVEDIGGER AND HE WENT CROSS THE FINISH LINE AND HE WIN THE RACE 

Wow. First off, you'll notice several things in the original. He uses all caps (and not the way most of us would.... he doesn't use caps lock, he hits shift and then the letter for EVERY SINGLE letter he types). He also doesn't put spaces in between his words... oddly enough, he writes the exact same way, although we're working on spacing and it's getting better with his written work. We estimated, based on the logs, that this took him about 6mins and 42secs to type this all out. Now, given Ashton's lack of ability to focus on something for more than a couple of minutes at a time, we're guesstimating that it took him probably around 10minutes. That's a lot of perseverance about wanting to convey a thought.

What's somewhat "ironic".... this is almost verbatim a conversation between my boys and I one morning this week.... and yes, a cuss word was really used. WOW! This shows Ashton's listening to every. single. word. that's being said around him, for him being able to type it all down like this.

I'm thoroughly amazed to be honest. It also means that we all need to be more careful of what we say to each other, and how we say it. Ashton's obviously processing it and hearing it. He's not oblivious. He's aware, very aware. His autism isn't slowing down that part of his brain.

Thought I would share, just a small glimpse into his mind.... for what it's worth. Looks like we need to work on typing skills.... because he can obviously type! :)

He's finally getting it!

Wow.

Ashton was able to attend to an 8minute task today.

WOW.

I can't begin to tell you how BIG of a deal this is!

He apparently got upset earlier in the day when he was non-compliant with a task but wanted a treat. They explained to him that "you do not get a treat if you get up from the table at lesson time". He was M.A.D - VERY VERY M.A.D!

So mad, that he went and grabbed his daily journal and wrote "NO MAM" (no ma'am) over and over and over and over and over and over again..... on top of one another even. He expressed his anger in a completely appropriate (albeit, comical) way. Sure, there was a second or two of screaming but then he went and got his journal. He EXPRESSED himself! APPROPRIATELY. I cannot even BEGIN to explain how big of a deal THAT is either.

His teacher is constantly amazed that he expresses himself so freely. Happiness? He giggles, laughs, flaps and claps, and teases/plays with you. Mad? Screams and claps/flaps (harshly, not gently like when he's happy) and loudly protests. When he's sad? Oh it's pitiful... the tears. The sadly scrunched up face. The D.R.A.M.A!

Anyways... a little later, he asked for his treat and was told no, because it was not a lesson time yet and he would have to wait until it was time. So, when the teacher got ready to do the lesson (he's being worked with 1:1), she reminded him again that he would not get a treat if he got up from the table during the lesson.

Well... he sat there for EIGHT minutes and finished the task. He earned 5 chocolate chips because they were so excited that HE "got it!"

It's in there..... :)

HE'S in there.

It's getting him to allow us to see that sweet, smart and funny boy that's in there!

So proud that he's learning to more appropriately show his anger (I'm going to get him a journal for home, so he can do this at home too) and that he's finally getting the idea that he needs to do work at school.

SO SO SO SO proud! :)

Thumbs up on the new meds

Funny enough, both boys started on new medication almost 3 weeks ago. Yes, I was all crazy and had them both start at the same time.

For Holden we switched from Daytrana 20mg (down from 30mg in December) to Concerta 18mg. We made this switch because of the skin irritation from the Daytrana (it's a patch) and it just didn't seem like it was as effective anymore; 30mg he acted super mellow for the greater part of the day and then we had MAJOR attitude issues in the afternoon (the drop-off effect once the meds have left his system)... that's all fine and good but that's not his normal personality. He's usually pretty chipper and happy and talkative. We reduced to 20mg in hopes of helping him gain weight, but it didn't have that effect and while the mellow mood and attitude issues were less, it was obvious the med wasn't working as well as it used to. So, Concerta was our next try. He can now swallow pills, so this was perfect timing. We began practicing with mini M&Ms, then regular M&Ms and then peanut butter M&Ms (those are pretty big too, btw!). So far, he's done an amazing job with this new medication, he's more like himself and he's still doing a great job in school (the most important thing). So three weeks into it and I'd say we found a winner for the meds. PLUS... he's EATING! According to our scales he's gained about 2lbs since the switch, but we'll see what the official weight gain is when the boys have their checkup with Dr Madren in March. I'm anxious to see how much he's gained/grown.

As far as Ashton goes.... he's been prescription med free since last summer. He's been his easiest to manage in YEARS, surprisingly. I was hesitant to start him back on any medication because I know just how strongly he reacts to even a very small, minimal dose. However, after giving him a full nine week period to adjust to his new school, teachers, classmates and schedule, it had become apparent that he needed something to help settle him and help him focus/attend to his work. So, I consulted with Dr. Madren over email (by the way, can I say how absolutely awesome it is that I have a medical professional that I trust with my children's medical care, that I can contact via email instead of having to schedule an appointment?). Keeping in mind, I made mention of the possibility of needed to start an ADHD med with Ashton, at our last appointment in December. So, we decided to try the med he'd been on most recently for ADHD, and that was Adderall XR at 15mg. It became quite apparent the first day that this was not going to work. All Ashton did that first day was lay around and he didn't even smile, not even one single time. I gave it to him the next day and again, more of the same. So, the third day (this was over a four day weekend) I didn't give him the meds. Thinking that maybe he was coming down with something, I figured he would be acting the same (laying around, no smiling) if he was ill. Well, he wasn't sick... he was back to his normal silly, happy self. I emailed Dr. Madren back and asked what we should do. He suggested halving the dose to approx 7.5mg. This dose is what Ashton's been on ever since. He's the same happy, go-lucky kid.... but he's able to sit and attend to some of his work. However, having motivators/reinforcers that work also seem to be helping a great deal. Ashton's teacher set up her laptop at school as a "movie station" for Ashton. When he's completed a task, he can go over there and watch a 20minute movie clip (or whatever the allotted amount of time was). AWESOME!  What also seems to be helping is giving him the one on one attention he needs. He's been much more successful in school over the last couple of weeks and that gives me great hope for his future.

So yay for new meds. That WORK. and that have little to no bad side effects. So far, I haven't noticed any bad side effects with either of the boys, so let's hope this trend keeps up!

Heart to heart with Ashton's teacher

So.... Ashton's teacher called me over the weekend. I'd heard from one of his classroom assistants that the teacher had been in and out of the classroom all week due to a family emergency, turns out her uncle had been in the hospital and then passed away on Friday. :( What a sad time for her family, please keep them in your prayers.

She reiterated her statement, Ashton is not going anywhere. While she may have mentioned SECEP somewhat offhandedly a couple of weeks ago, she is not looking to move him anywhere right now or even at all this school year. For those that may not know, SECEP stands for Southeastern Cooperative Education Programs. They are a regional educational system that is usually housed in a public school. The program that we are possibly considering, is ACP (Autistic Children's Program). However she, nor I, is looking to move him anywhere right now. If (or when) he goes into SECEP, she's not even wanting it to be a full-time placement, just wants him in there for the academic instruction.

We talked about the testing that has currently been done by the school district (psychological and educational). We both feel that the testing is somewhat irrelevant; Ashton is capable and able to do far more than the testing shows. But, we will continue on with the other testing, as I do feel it's a good idea to get a baseline. We may redo testing next year and find he's made a 3-4 year progression in just a year!

So ... here's where things are going right now......

The right direction..... finally.

His behavior is still causing some issues, he's calling kids names (not to be mean, but because he's seriously never been taught how to appropriately interact with other children) and his non-compliance with academic work.

There's one kid he keeps calling Blob... this particular child is in a wheelchair. Let me now state that Ashton comes up with names for people that he enjoys and likes being around. (Chameleon, Baby Elephant, Baby Cornball, Johnny Test, Brenda the Whale, Herky Jerky, etc..... are all names he's given to others in the past; obviously some are nicer than others but to him, it's just a name to call someone he enjoys and likes). Well, calling this child 'Blob' hurts this child's feelings, obviously. He has a name and that's what he wants to be called. Ashton will frequently call this child 'Blob' and then giggle. The teacher will correct Ashton in a firm voice to which he'll then apologize for being rude, but then goes back to calling the child Blob.

As far as his academics ..... he's just not wanting to do any work, although this is slightly changing now with the addition of a very small dose of Adderall XR. We started out on 15mg over a week and a half ago but it became very apparent that 15mg was way too high of a dose. All he did was lay around the 2 days I gave him the meds and didn't smile, eat or anything. Emailed Dr. Madren who said to halve the dose, and he's been at that dose now for about a week. School has noticed an improvement in Ashton's ability to focus and work on schoolwork, and this is without the staff knowing he was on meds. The only one who knew was the main teacher. The speech therapist came up to her last Friday and was like "What is going on with Ashton?" He sat and participated in the lesson, answered questions, etc. A total turn-around! It's definitely not a perfect change, but if he's finally starting to sit, listen and participate in class and Speech and OT, than we're doing good!

Basically ... the teacher wants to give Ashton the rest of the school year to figure out where we are at. She's looking for academic progress, to show that he's actually learning. Looking for progress to be made to calm some of his behaviors. Basically, anything to show that this class is a good mix for him, both academically and socially. If he keeps up the way he's doing, I think we'll be just fine. We did discuss retaining him in 7th grade in the fall, though in the self-contained classroom world, this isn't really a big issue, since the only thing that would change would be his electives/teachers for electives. He's a young 7th grader (still 12years old) and it will give him some much-needed catchup time to be ready for high school. Plus, it will give him some classroom, teacher and school stability. In addition, if we're going to retain him, now is the best time. He's at a new school with new classmates and teachers. He won't see classmates that he's been in school with since 3rd grade move on to high school while he's still at the middle school another year at his old school.

We're (well, the teacher is) rewriting his IEP and the goals/accommodations and modifications. We're still waiting for the rest of the testing to be done, but in all actuality, neither one of us really thinks the testing is all that conclusive or helpful. It gives a baseline to work from and that's about it, but Ashton's got far higher level thinking skills than the test portrays. He's capable of a lot of higher level academics in some subjects, but he needs the means and time to be able to process and comprehend. I'm excited to see what his new IEP goals and stuff will look like.

I'm also going in to observe his classroom at least a couple of different times ("Sure, come in any time!" his teacher said.... my classroom has an open door policy!). I want to see what they're seeing so that maybe I can come up with some strategies to help him. He's a smart kid and loves hands on activities! Take one of the days that he was suspended last year, I basically put him through the paces for a full day and had him do all kinds of classwork, etc. Granted, it was stuff I knew he could do; the intention wasn't to frustrate him, but to see what he's capable of doing. He obviously had several breaks throughout the day, but he did a phenomenal job! But his favorite part of the day was when we did some science experiments. He had a blast and had a HUGE smile on his face.

So.... all of this to say that we're in a much better place than we were before. As long as things keep progressing the way they are, then nothing will change, except Ashton's IEP goals, etc. If he can't pick up on things academically, we may have to change his placement for academic purposes. But that's putting the cart before the horse. :)

Have a great day everyone!

New Test results.....

Yea, so it's a bunch of mumbo-jumbo. I just included the actual test results from the testing not all of the summaries, etc. Basically the jist of the testing summaries say that he's got a lot of scattered skills (as do most children on the spectrum). There were some subtests that he did very well in, until he was "done", and than he just refused. So, my guess is maybe his scores would have been higher had his focus/attention been better. It seems he did pretty good in word recognition, having decoded the words: poise, interject, ridiculous, and budge. His spelling is good, but comprehension skills are lacking (well, he can, but apparently chose not to for testing purposes, stinker! LOL). Math skills are also lacking (it's why he's allowed the use of a calculator per his IEP).

We have an eligibility meeting on Wednesday, and I'm curious to see what is discussed and what results from that meeting. I need to find my copies of the SECEP evals that were done back in 2007, lord help me now! They're not in his cumulative file (who the heck knows why) and I want them in there. However, it kind of helps my case that the last testing Ashton had done (as of right now, on record) is 2001. THAT'S RIDICULOUS! Never again will I let a school district sweep away my concerns for Ashton and forego testing because "duh, it's obvious he still qualifies". Ugh.

Anyways, anyone care to help actually me decipher these results?! I'm at a loss.... the summaries are helpful, but they don't actually tell me what these test results actually mean. 

Thanks! :) Have a great day!

New DSM-V criteria for Autism Spectrum Disorder

DSM-V Criteria for Autism Spectrum Disorder

So, much has been floating around the internet about the new DSM-V criteria that will be lumping all autism-related diagnoses into one category "Autism Spectrum Disorder".

the criteria is as listed below, directly quoted from the link above...

Autism Spectrum Disorder
Must meet criteria A, B, C, and D:

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
   1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
   2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
   3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people 

B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:
   1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
   2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
   3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
   4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects). 

C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities) 

D. Symptoms together limit and impair everyday functioning.

Fortunately, or maybe not, Ashton still falls well within the guidelines set forth. He's very classically autistic, though he's fairly high-functioning. But, upon reading this, it sounds like a subset of Autism (now known as Asperger's and/or PDD-NOS) will no longer full under the Autism Spectrum Disorder, and in fact, be cured! Imagine that, curing an entire population, just by changing the criteria needed for a diagnosis. The rates of Autism will dramatically shift and children who are now labelled as Aspergers will go back to being just bad kids who need more discipline. Those are not my thoughts.

Then, I read this quote from Ashton and Holden's doctor, Dr. Eric Madren, on Facebook:

"Here's the main problem with the proposed re-definition of autism in DSM-V: autism shouldn't even be in DSM-V. This is the diagnostic manual used by psychiatrists to define psychiatric disorders. Autism is not a psychiatric disorder. It is a systemic disorder that affects the brain as well as other organ systems including the gastrointestinal system and the immune system. Don't take my word for it. Ask Dr. Martha Herbert, pediatric neurologist at Harvard and Mass General. Defining autism according to criteria established by psychiatrists is nothing more than a historical relic. Psychiatrists are infrequently involved in the evaluation and treatment of individuals with autism, unless of course that individual has a co-existing psychiatric disorder. Much more often, the evaluation and treatment of individuals with autism is managed by neurologists, developmental pediatricians, and yes, primary care physicians. We should be the ones who establish the diagnostic criteria, not the American Psychiatric Association."

And I thought to myself, YES - he's absolutely and completely correct.  Why is a psychiatric association coming up with the diagnostic criteria for a neurological disorder? Why are the doctors who actually treat these patients not allowed to at least have some input on the criteria? Many times, these children and adults with autism spectrum disorders are never even seen by psychiatrists or psychologists, unless another disorder is manifesting itself along with the Autism. Many of these individuals have other body system symptoms that play a part in their autistic symptoms (whether it be gastrointestinal, immune system, sensory, etc).

So much has been posted about this, as this article points out... http://www.msnbc.msn.com/id/46060802/ns/health-childrens_health/t/new-autism-definition-may-exclude-many-study-suggests


So... my thoughts are this:


1. I do think in some cases, autism may be over-diagnosed. Some kids are so mildly autistic that they require no extra medical attention, no extra help in school and no outside help from parents, therapists, and don't require medication. Are these kids truly autistic? I don't know, but it does make me wonder, when I see so many children struggling and these others, who really truly do not have any struggles at all. I've also seen kids who were diagnosed when very young and seem to "grow out of it". This is not typical autism in my mind, it's a kid who may have been behind developmentally (behind the curve so to speak) and just caught up. There have always been kids like this, but I don't think they are truly on the spectrum.


2. With the above thought though, I do realize and know of many children who are not receiving the beneficial treatments, therapies and medication that could help them, because the diagnostic procedure has been very subjective over the years. One day they may seem mostly (or completely) typical and another they can seem very classically autistic. Insurance companies refusing to pay for beneficial treatment, doctors who refuse to diagnose, and parents who live in denial are all factors here.


3. I truly believe autism is on the rise. Changing the criteria for it isn't going to change that, but will only make it more difficult for families and medical professionals to assure that children and adults being diagnosed, are getting the help that they need to live in a society that is not meant for them.

4. No matter what anybody says, we need a consistent diagnostic criteria to identify all individuals with autism. Something that is precise and understood clearly, by everyone. Autism is not going to go away, and the parents and families of these individuals will not either.

Here's a petition to sign if you feel the changes are not in the best interest of the individuals it's supposed to help..... Maintain the current definition of Autism

Hanging my head in disbelief.... HELP AMELIA!!!

Read about Amelia Rivera's story, Kidney Transplant denied.

I cannot believe, that in this day and age, that a child is being denied a life-saving kidney transplant due to her cognitive disability ("mental retardation"). But that is exactly what is happening to little Amelia Rivera, a two-year-old little girl. She is in need of a life-saving kidney transplant, and just a few days ago, her parents were told that the transplant would not be happening because their beautiful little girl, Amelia, was ineligible due to her mental delays. Not because she was in too poor of health, not because there wasn't an available kidney (her family has a family member match), but because she has cognitive delays.

How is any of this even a question? A child needs a transplant, and if a donor can be found, you give it to them? Mental delays or not, it's still a child.... someone who deserves a chance at a life.

The doctor who told these parents that their child could not receive a potentially life-saving kidney transplant because she was deemed ineligible due to her mental delays (or in his words mentally retarded) should be absolutely ashamed of himself and humiliated. Children's Hospital of Philadelphia should be ashamed of themselves.

What's even worse? This is apparently a common theme amongst a lot of hospital here in the US, and that's just wrong in so many ways. This makes me cringe. Ashton is not classified as mentally retarded (intellectually challenged), but this makes me wonder if we ever found ourselves in a situation such as this, would he be denied for the same reason?

THIS HAS TO CHANGE! Please sign the petition located HERE, to show CHOP and everyone else that us as Americans will not stand for this.

Thank you and Good Night all!

Thankful Thursday

Today, I am thankful for such wonderful groups like Surfers Healing, Camp Gonnawannagoagin, and the many, many on-line support groups that I/I've belong(ed) to over the last 10years or so since Ashton's diagnosis.

Groups like Surfers Healing and Camp Gonnawannagoagin allow Ashton an opportunity to experience things that a "normal" (for lack of better words) child would, in a loving, engaging, and safe environment. The surfers and volunteers of Surfers Healing are gentle, gentle souls. You wouldn't expect these macho, sporty guys to be so gentle and kind with these special kids, but wow! Big, ole, amazing teddy bears! We've met a lot of awesome people within the Surfers Healing community, both in real life at the Virginia Beach camps as well as online via their Facebook page(s). Ashton's already looking forward to Surfers Healing Virginia Beach 2012! How COOL is it that he gets to surf with a REAL surfer, not just a family member who can "kinda" surf? The smiles and calmness that he gets to experience is amazing and awe-inspiring. Camp Gonnawannagoagin is a much needed source of respite during the summer months. Ashton gets to go to camp from 9am-3pm every day for 5 days straight. They go swimming every day (pool, beach, water park) and they do one other activity (mini golf, arcades, aquarium, Tae Kwon Do, etc). Each autistic camper is paired up with a typical peer buddy as well as an adult counselor. The social growth Ashton experiences every summer is amazing. The things he gets to do (Ocean Breeze, Tae Kwon Do, etc) are not things that I've done with him, but he LOVES them! It gives him an opportunity to experience camp and social outings, without Mom always having to be there.

The support groups have been numerous over the years. From online support groups to in real-life support groups to our family and friends. But they all serve the same basic purpose. To allow the opportunity for discussion of issues, different coping strategies, the ability to see Autism through another family's eyes, etc. But, they give you the opportunity to vent about the struggles or the opportunity to celebrate the small (or to us, large) victories that other family's that have only neuro-typical children wouldn't otherwise understand.

SO thank you. From me and my family to ALL of you!

Case of the "Mondays"

Did you know that there's an official affliction called .... the "Mondays"?

Ok in all seriousness... it's not official, or even a real affliction, but boy, it seems that it's running rampant amongst my fellow autism families today. And yes, it's Monday. The first full week back to school for many kids. (Last week was a shortened week).

Ashton wasn't "bad" at school, but he refused to come to group for any of his lessons. So therefore, he didn't get to bring a DVD home from school, and *that* my friends, made him mad mad mad mad MAD!

He apparently had a complete and total meltdown. Screaming down the hallway, etc. But, the school handled it but the teacher called me to ask me what she should do. I said DO NOT under any circumstances, send the movie home with him. He's smart enough to know what he did (not do work, the guidelines were very clear: come to group, participate, do your work. If not, no choice of DVD to take home). The sooner we make that very clear for him, the sooner he will realize that "hey, I want that movie, I need to do my work".

And honestly... he's been fine since he got home. He went to his elective and to PE this afternoon after the meltdown and did fine.

So, it wasn't a horrible day .... just one where Ashton (hopefully) learned a very valuable lesson. Do your work, so you can have the reward. (and really? we're asking for a 50% participation/work completion ... that's not too hard for him, since he did it 2 days last week).

So - here's hoping for a better Tuesday!

ABCs of the Special Needs Community

If you have any ABCs of Special Needs to add... feel free to comment below and I'll add them in! :)

- A -

ABA: Applied Behavioral Analysis

ABC: Antecedent-Behavior-Consequence (a method of tracking targeted behaviors)

ABI: Adaptive Behavior Inventory

ADD: Attention Deficit Disorder

ADHD: Attention Deficit Hyperactivity Disorder

AIT: Auditory Integration Therapy

APD: Auditory Processing Disorder, also referred to as CAPD or Central Auditory Processing Disorder

APE: Adaptive Physical Education

ARD: Admission, Review, Dismissal (used in Texas)

AS: Asperger's Syndrome (a high-functioning form of Autism)

ASD: Autistic Spectrum Disorder

- B -

BD: Behavioral Disorder

BD/ED: Behavior Disordered / Emotionally Disturbed

BIP: Behavior Intervention Plan

BOE: Board of Education

BP: Bi-Polar (formerly called "manic-depressive")

- C -

CAPD: Central Auditory Processing Disorder, also referred to as APD, see above

CD: Conduct Disorder

CNS: Central Nervous System

CP: Cerebral Palsy

CSE: Committee for Special Education (called "MDT" in some states)

CSPD: Comprehensive System for Personnel Development

CST: Child Study Team (also called Child Find Team)

- D -

DAS: Differential Abilities Scales (an early childhood educational eval)

DD: Developmental Disabilities

Dx: Diagnosis

DOE: Department of Education

DS: Down Syndome

- E -

ECSE: Early Childhood Special Education

ED: Emotionally Disturbed

EI: Early Intervention

EPSDT: Early Periodic Screening Diagnosis and Treatment

ESE: Exceptional Student Education

ESEA: Elementary & Secondary Education Act

ESL: English as a Second Language

ESY: Extended School Year

- F -

FAPE: Free Appropriate Public Education

FAS: Fetal Alcohol Syndrome

FBA: Functional Behavior Anaylsis

FERPA: Federal Educational Rights and Privacy Act

FOIA: Freedom Of Information Act

- G -

GAF: Global Assessment of Functioning scale (used in psychiatric evals to state level of functioning)

- H -

HFA: High Functioning Autism (such as Asperger's Syndrome)

HoH: Hard of Hearing

- I -

IDEA: Individuals with Disabilities Education Act

IEE: Independent Educational Evaluation

IEP: Individualized Education Plan

- J -

- K -

- L -

LD: Learning Disability

LEA: Local Education Agency (the school district)

LFA: Low-Functioning Autism (defined as autism occurring with mental retardation, e.g. w/ IQ lower than 70)

LLD: Language-based Learning Disability

LRE: Least Restrictive Environment

- M -

M-D: Manic Depression (now referred to as Bipolar)

MBD: Minimum Brain Dysfunction (what ADD/ADHD used to be referred to as)

MDO: Major Depressive Disorder

MDT: Multi-Disciplinary Team

MH: Multiple Handicapped

MH: Mental Health

MPD: Multiple Personality Disorder

MR: Mental Retardation, IQ < 70

- N -

NAMI: National Association for the Mentally Ill

NICHCY: National Information Center for Children and Youth with Disabilities

NIH: National Institute for Health

NOS: Not Otherwise Specified, usually seen as PDD-NOS

NLD or NVLD: Non-Verbal Learning Disability

- O -

OCD: Obsessive-Compulsive Disorder

OCR: Office of Civil Rights

ODD: Oppositional-Defiant Disorder

OHI: Other Health Impaired

OSEP: Office of Special Education Programs (located Washington, DC)

OSERS: Office of Special Education and Rehabilitative Services

OT: Occupational Therapist

OT: Occupational Therapy

- P -

P&A: Protection & Advocacy

PDD: Pervasive Developmental Disorder (a form of Autism)

PDR: Physician's Desk Reference

PET: Positron Emission Tomography (Brain scan that can be used for diagnosis of Neurologically-based disorders)

PIQ: Performance IQ

PLEP: Present Levels of Educational Performance

PLOP: Present Levels of Performance

POHI: Physically or Otherwise Health Impaired

PT: Physical Therapist

PT: Physical Therapy

PTI: Parent Training and Information center

PTSD: Post Traumatic Stress Disorder

- Q -

- R -

Rx: Prescription

- S -

SD: School District

SEA: State Education Agency

SED: Severe Emotional Disorder

SED: Severely Emotionally Disturbed

SID: Sensory Integration Dysfunction, also referred to as SI, or DSI

SIB: Self-Injurious Behavior

SIPT: Sensory Integration and Praxis Text

SLP: Speech-Language Pathologist

Sped: Special Education

SSRI: Selective Serotonin Reuptake Inhibitors (class of meds, incl. Prozac, Zoloft, Praxil, Luvox)

- T -

TEACCH: Treatment and Education of Autistic and Related Communication Disorders

TS: Tourette's Syndrome

TSS: Therapeutic Support Staff

- U -

- V -

VIQ: Verbal IQ

- W -

WAIS: Wechsler Adult Intelligence Scale (an IQ test)

WISC: Wechsler Intelligence Scale for Children (an IQ test)

W-J-R: Woodcock-Johnson Revised (a psycho-educational test)

- X -

- Y -

- Z -

WELCOME 2012

So.... New Years resolutions come and go. I never seem to be able to follow through with one. Whether it be weight loss, cussing less, more patience, etc. But, I do need to do all of these, so I'll move those over to the "Make Lifestyle Changes" column and try and follow through with them. However, I think setting an attainable goal is a good thing, so my New Years resolution will be....

Cook/bake/buy more culturally diverse foods. 

This one should be easily attainable. We started off the New Year with one.... homemade hummus with some store-bought naan (need to learn how to make it). I want my family to eat stuff other than tacos, spaghetti, burgers, and our normal dishes.

Oh, I thought of another one and this should make my fellow bloggers happy.....

Visit and comment on more like-minded blogs!


This is another one that should be more easily attainable. I've accumulated a list of blogs that I love to visit and read, but I hardly ever comment. That. Must. Change. NOW! :)

So, be looking for me to visit your blog and comment more often! :) Maybe we can reciprocate the linking to each other's blogs?

So BRING IT ON! :)

oh, and Happy New Year everyone! Live long, love much, be happy and prosper!

Our year, looking back...........

The future rolls in and the past is washed away. (II Corinthians 5:17). 

So.... as you could tell from the last post, our 2011 was quite a busy, fun and crazy year! So, looking back... this is what all went on, starting from most recently, to the beginning of the year!

DECEMBER

Christmas - the year of geeky tech and video games! Ashton got his own tablet device, a Motorola Xoom. Holden got a lot of video games, both from us and from his grandparents/great-grandparents. :)

First 4.5 weeks at Ashton's new school - and he's doing great!

CBI trip - Ashton went on his very first CBI trip ... without me having to attend and was SUCCESSFUL!

13th wedding anniversary (12/10/98) - Yep, David and I have been married for 13 years. Hard to believe! Sometimes it seems like yesterday that we were married, and others... it seems like, forever ;) Thankfully, it's usually the former rather than the latter. :)

NOVEMBER

Thanksgiving - What more could you be thankful for? Time with family, good food and lots of laughs and fabulous conversations!

Gonnawannarunagin 5k & 1/2mi Fun Run - Holden ran his first 5K and finished with a time of 40:47. David ran his first 5K in 23yrs and ran it in 42:40. Ashton ran the 1/2mi. fun run and finished with a time of 6:27 (pretty impressive!)

Ashton started at a new school - After a difficult 6th grade last year (w/ 2 suspensions) and a very rough start to his 7th grade (w/ 2 more suspensions), we made the decision to move him to a new school! He LOVES it!!!

Awesome report card! - Holden had 3 As, 1 B and all Ss on his report card - WTG Dude!

OCTOBER

Halloween - Holden dressed as a Dragon Ninja. Lots of candy and he got to go out with his friend Connor's family

First roller coaster ride - Holden went to Busch Gardens for the first time with his cousin and rode his first roller coaster ride - The Mach Tower. He LOVED it!

Ashton makes dinner - Ashton made a pizza for dinner, mostly by himself other than the oven part! YAY! independence rocks!

SEPTEMBER

IEP madness/hell starts/continues... and Ashton receives 2 suspensions within 3 weeks. One in September, the 2nd in October.

Soccer Season and wrestling season starts - First year we let Holden participate in 2 sports in the same season since 1st grade. He did a pretty good job AND he kept his grades up! YAY!

First Day of School - First day of 4th grade and of 7th grade. Where has the time gone?!?!

AUGUST

Hurricane Irene - the boys' 2nd major hurricane... the first one was back in 2003 when Isabel came through shortly after we moved down here. They weathered it well (no pun intended)

David's & Jenn's birthdays - David's last year in his 30s as he turned 39. My last year in my early 30s! Next year I'll be solidly in my mid-30s! Waaaah! Guess what Mother Nature gave us? A bona fide EARTHQUAKE! Wild!!

Surfers Healing VA Beach - Ashton got to do Surfers Healing for the 2nd year in a row. He got to see Kalani from last year, and met Izzy (co-founder of Surfers Healing) and got to surf with Tim. What a blast and Grandma, Grandaddy, Uncle Kevin and Chelsea got to see him surf!

British Challenger Soccer Camp - Holden participated in his first soccer camp, and what a blast! While the weather was pretty excruciating, he learned a lot of good skills and learned that British Folks are some pretty cool people!

JULY

Toby Keith @ Eagle Fest - I won tickets to the Toby Keith concert from Eagle 97! I was ecstatic! I took my friend, Cathie Quimby and while Toby's portion started late (due to a sudden onset of bad weather) it was a BLAST!

Trip to Chowan River - Holden rode the intertube by himself for the first time! He did great, even though he got dumped once! he handled it like a champ! :) Ashton had a blast riding the jetski and just in general, riding on the boat :)

Summer School - Ashton went to summer school for the first time in 3 or 4 years. Did FANTASTIC! Such a wonderful experience for him... 

Ken Chertow wrestling camp - Holden attended wrestling camp for the 2nd year in a row. He liked it but the days are really long (9am-9pm). But he learned a lot and made new friends. :)

Happy Birthday America - We had a great 4th of July dinner out at my inlaws! :) Fun with grandparents and cousins... can't ask for more! :)

JUNE

Mini Surf Camp - Ashton attended a mini surf camp held by Guardian Angels and Team Hoyt of VA Beach. He had a blast and what a way to kick off the summer after a horrid school year! :)

Last Day of school - Holden ended up with quite a few certificates and Ashton got the "Best Friend" award for his class for being friendly.

MAY

Happy Mother's Day - Had a wonderful day. Love being with my hubby and boys. :) Went to Chick-Fil-A's Mother/Son date night!

Yay! Brand New TV time! - David walled off a portion of the space above our fireplace and we put in a big 60" wide-screen HDTV!

APRIL

Happy Easter! - Another holiday with family and easter fun! The kids loved their baskets! :)

Happy Birthday Ashton and Holden - Yep, Ashton turned 12 and Holden turned 9.

Ashton's 2nd suspension - we won't go into the details. But suffice it to say that I wasn't happy, AT all. Ugh.

MARCH

Operation Smile Final Mile - Holden ran his very first official race. He finished with a time of 8:30. Not bad for a first race. He would go on to run Fun Run mile at his school's field day in 7:15!

End of wrestling season - Holden finishes up his 2nd full year of wrestling. He now needs a new pin board for all of his medals!! :)

FEBRUARY

New laptop for me! - I got a new MacBook Pro! Loving it! So much better than a Windows based laptop and no longer have problems with it crashing, locking up (although don't ask about earlier tonight, 12/31)

Extreme Makeover build in VA Beach - Holden, Lorey (David's cousin) and I attended the Extreme March to make a difference. We got to see a few of the stars from the show, see the house from the outside and make a difference by donating canned goods. What a blast!

JANUARY

Ashton's VERY FIRST ER trip - We got quite a scare in late January when all of a sudden Ashton's speech went from easy to understand to slurred and unintelligible. He deteriorated and ended up with a fever. Diagnosis (after 7hrs in the ER) was a basilar migraine. We think he was at the start of a sinus infection as well which didn't help. Luckily he was fine after a few days but wow, SCARY!

HAPPY NEW YEAR 2011 - We had no idea what to expect. Some things happened that we weren't expecting and other things happened that we did. Good, bad and everything in between.

LET'S BRING IN 2012 and have the best year ever!!!!