Monday, November 17, 2008
What is Autism?
pg.2 ~ "(Autism) has been used to describe individuals who appear to be self-contained or who exist in their own little world, an inner realm seemingly set apart from others. ~ Autism is a common neurological anomaly that may preclude the body from properly receiving signals transmitted by the brain, resulting in misfires and disconnects. ~ Those who are Autistic are inherently gentle and exquisitely sensitive."
Sunday, November 9, 2008
Does Your Child Have Sensory Processing Disorder?
pg.32 ~ "Another component of Autism - and a very important one - is difficulty with sensory modulation, sensory discrimination, motor planning, and sequencing. Problems with sensations are sometimes overlooked or downplayed but are among the main areas of impairment."
pg.33 ~ "That most people with Austim have some degree of SPD is a recognized fact. Understanding how sensory and motor problems complicate the child's daily life is crucial for designing an appropriate intervention program. Parents must ensure that their child's treatment program includes ample sensory-motor experiences and an individualized sensory diet.
We had a rough morning that day so I probably should have cancelled going to the movies but I didn't want to disappoint my mom. Even though she pushed to have Joey diagnosed, she doesn't quite grasp what his diagnosis means and how his needs to come before everyone else's.
Joey fell asleep on the way to the movie but woke up when we got there. He seemed very excited about the movie until it started. The noise was unbearable. His hands immediately went up over his ears and he looked like he was in pain, yet when I asked him, he didn't wanted to leave. I ran out to the manager to ask if they could lower the volume and they did. I enjoy going to the movies, but even I felt that it was too loud for my ears. Loud noises do bother Joey but he has never been bothered in a movie theatre before, even at this location.
Joey seemed better after the volume was lowered and the hands slowly came down. He enjoyed his pretzel and some of my popcorn and we had a good time. The ears got covered again a little over halfway through but he still didn't want to leave. He was in awe of seeing his favorite characters on the big screen.
The Autism Society of America - Greater Phoenix Chapter offers Sensory Friendly Films which is only at one movie theatre in Phoenix and one in Mesa, with one showtime on the 1st Saturday of every month (of course, I work on Saturdays). They show the selected film with lights turned up and the sound turned down so that children affected by Autism Spectrum Disorders can enjoy the film in a setting just for them. What I would like to see is more movie theatres offering this or for all theatres showing children's movies to just lower the volume! With 1 in 150 kids affected by Autism and many other children affected by other disorders like Sensory Processing Disorder, the vast majority of children would benefit from having the volume turned down.
You can get more info about Sensory Friendly Films at http://www.phxautism.org/calendar/month.php
It started with seeing my therapist for the first time in a few months. My first thought was telling her about Joey's diagnosis. We had limited time and I wanted to get her thoughts on play therapy and possibly a referral to another therapist in her clinic. She then hit me with something I wasn't ready for. "How are you dealing with this?" "I'm fine" is always my answer. This is not about me, it's about Joey. But, of course, she soon reminded me of what I've read before: that there is a certain amount of grieving that needs to be done when your child is diagnosed with something and you realize that their life's path will be greatly altered. Maybe it's something I haven't been ready to face. Maybe it's something I can only take in small doses.
The next day was our usual speech appointment with Rosie. I picked up Joey from preschool and took him to his 4 year check up at the pediatrician. He did great, especially because he already had his shots. I wanted to reward him for how well he's been doing so we went to Wal-Mart to pick up a Lego set before we met with Rosie. Bad move on my part. We headed home and the struggle began to get him to focus. I put him in time out to see if I could get him to focus but that didn't work. Instead, he locked himself in his room and couldn't get himself out. It is events like this that just make me want to cry. I can't help my son and I feel like a total failure as a mother. It happens, Rosie assured me, but does she really understand Joey? Half the time, I don't think I do...but I'm trying.
After Rosie left, Joey was fine. All he wanted to do was be home and play with his new Lego set. This is why I blame myself for messing up his speech therapy appointment. I should have known better. So many things need to be analyzed and considered in Joey's day. I sometimes wonder what it's like to just BE.
Monday, October 20, 2008
I can't believe my baby is 4! He has turned into a cool little dude with his own personality. He is talking so much more than he was a year ago, even 6 months ago. Our goal for this coming year is to continuing working on understanding PDD-NOS, getting Joey involved in all the therapies needed and making his life the best it possibly can be.
Today was a breakthrough day for Joey and a great day all around. It started out with Joey's IEP (Individual Education Plan) and parent/teacher conference at pre-school. I was happy to hear that he is doing great! He is the snack helper (following in his Mom's footsteps, who always wanted to know what everyone was having for snack in Kindergarten); he is calling his peers and teachers by name; he is participating in class and making great progress in speech. The school psycholgist also feels that he is not in need of individual occupational therapy, which gave me some reassurance.
After the meeting, he wanted to visit with his father for a while. I am usually all for this; however, he is usually moody after seeing his father and I was worried how this would affect his speech therapy session at home later on that day. His dad dropped him off after lunch, said that he was in a bad mood, which had me worried but it ended up being the first appointment with Rosie that he actually opened up and cooperated. He was in a great mood and talked to Rosie the whole time. I have a feeling he was just agitated with his dad.
We went on to enjoy the day together, just me and my Joe. I really felt like it was the turning of a new chapter in Joey's progress and it helped to take away some of the overwhelming concerns that I've been having about him and the diagnosis he received.
I think we can do this!
After reading his statement (below) and hearing about how he helps out Autism charities, I will cut him some slack.
"I thought I made my feelings about autism very clear: that I not only support the current rational approaches to the diagnoses and treatment of real autism but have witnessed it firsthand while watching very dear old friends raise a functioning autistic child.... The point of the chapter is not that autism doesn't exist -- it obviously does -- and I have nothing but admiration and respect for parents dealing with the issue, including the ones I know. The bulk of the chapter deals with grown men who are either self-diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny," Leary said.
As always, here's the link:
Wednesday, October 15, 2008
Here's the link:
Denis Leary Blames "Inattentive Mothers" on Autism Crisis
Wednesday October 15, 2008
In his new book, Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid, Denis Leary writes that autism is a joke.
"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."
The Autism Society of America has fired back: "For Mr. Leary to suggest that families or doctors conspire to falsely diagnose autism is ridiculous . . . [His] remarks reflect the same misconceptions of autism being caused by bad or unemotional parenting that were held over 50 years ago."
6:19 PM MichelleD in AZ Says:
Thank you 4:03pm for the information about Denis Leary's hometown firehouse raising money for Autism.
I have been a fan of Leary's since his comedy spots on Mtv long ago. Being a New Yorker, I naturally loved his show 'Rescue Me' for its tribute to NYC firefighters. Sadly, Denis Leary lost a fan today because of his ridiculous statements. I have a son on the Autism Spectrum. It is opinions like Leary's that hold us back from making more advances in research for this terrible disorder.
Here's the link:
Occupational Therapy and Autism: The Basics
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By Lisa Jo Rudy, About.com
Updated: August 21, 2007
About.com Health's Disease and Condition content is reviewed by Steven Gans, MD
What Is Occupational Therapy?
According to the American Occupational Therapy Association, occupational therapy is "skilled treatment that helps individuals achieve independence in all facets of their lives. Occupational therapy assists people in developing the 'skills for the job of living' necessary for independent and satisfying lives". Very often, you will find occupational therapists working with injury victims to regain use of their hands for various daily chores, handwriting, and personal care.
Why Would a Person With Autism Need to See an Occupational Therapist?
In the case of autism, occupational therapists (OT's) have vastly expanded the usual breadth of their job. In the past, for example, an occupational therapist might have worked with an autistic person to develop skills for handwriting, shirt buttoning, shoe tying, and so forth. But today's occupational therapists specializing in autism may also be experts in sensory integration (difficulty with processing information through the senses), or may work with their clients on play skills, social skills and more.
What Does an Occupational Therapist Do for People with Autism?
Since people with autism often lack some of the basic social and personal skills required for independent living, occupational therapists have developed techniques for working on all of these needs. For example:
~Provide interventions to help a child appropriately respond to information coming through the senses. Intervention may include swinging, brushing, playing in a ball pit and a whole gamut of other activities aimed at helping a child better manage his body in space.
~Facilitate play activities that instruct as well as aid a child in interacting and communicating with others. For the OT specializing in autism, this can translate specifically into structured play therapies, such as Floortime, which were developed to build intellectual and emotional skills as well as physical skills.
~Devise strategies to help the individual transition from one setting to another, from one person to another, and from one life phase to another. For a child with autism, this may involve soothing strategies for managing transition from home to school; for adults with autism it may involve vocational skills, cooking skills and more.
~Develop adaptive techniques and strategies to get around apparent disabilities (for example, teaching keyboarding when handwriting is simply impossible; selecting a weighted vest to enhance focus; etc.)
How Can I Find a Qualified Occupational Therapist?
OT's are often included as part of a comprehensive school-based or early intervention program for children with autism, and the OT may be hired by or contracted by the school district. In addition, pediatricians can help parents identify early intervention programs available through a state’s department of social services or department of health. Adults with autism may be able to access OT services through developmental disability programs or social services agencies. Very often, Occupational Therapy can be funded through health insurance and/or Medicaid.
For more information about Occupational Therapy and autism, you might want to read The American Occupational Therapy Association's Fact Sheet on Autism.
More Autism Basics
Symptoms of Autism Treatments for Autism Spectrum DisordersWhat Causes Autism?
Social Skills and Autism - Autism and Social Skills Training
What Is Occupational Therapy?
Symptoms of Autism - What Are the Symptoms of Autism?
What Should I Do While I Wait for an Autism Diagnosis? - Autism - Children
Tuesday, October 14, 2008
The Cause of PDDNOS and the Symptons & signs of PDDNOS
The Cause of PDDNOS
Both behavioral and biological studies have generated sufficient evidence to suggest that PDDNOS is caused by a neurological abnormality--problems with the nervous system. However, no specific cause or causes have been identified.
While studies have found various nervous-system problems, no single problem has been consistently found, and exact causes are far from clear. This may be due to the current approach of defining PDDNOS based on behaviors (as opposed to, say, genetic testing). Hence, it is possible that PDDNOS is the result of several different conditions. If this is the case, it is anticipated that future studies will identify a range of causes.
The Symptons and Signs of PDDNOS
Generally, children are 3 to 4 years old before they exhibit enough symptoms for parents to seek a diagnosis. There is no set pattern of symptoms and signs in children with PDDNOS. It is important to realize that a very wide range of diversity is seen in children with PDDNOS. All the items of behavior described in this section are common in these children, but a single child seldom shows all the features at one time. In other words, all children with PDDNOS do not have the same degree or intensity of the disorder. PDDNOS can be mild, with the child exhibiting a few symptoms while in the school or neighborhood environment. Other children may have a more severe form of PDDNOS and have difficulties in all areas of their lives. Because of the possibility that PDDNOS and Autistic Disorder are on a continuum, many clinical features described in the following section are very similar to those being described in the literature for Autistic Disorder.
1 . Deficits in Social Behavior
Some infants with PDDNOS tend to avoid eye contact and demonstrate little interest in the human voice. They do not usually put up their arms to be picked up in the way that typical children do. They may seem indifferent to affection and seldom show facial responsiveness. As a result, parents often think the child is deaf. In children with fewer delays, lack of social responsiveness may not be obvious until well into the second or third year of life.
In early childhood, children with PDDNOS may continue to show a lack of eye contact, but they may enjoy a tickle or may passively accept physical contact. They do not develop typical attachment behavior, and there may seem to be a failure to bond. Generally, they do not follow their parents about the house. The majority do not show normal separation or stranger anxiety. These children may approach a stranger almost as readily as they do their parents. Many such children show a lack of interest in being with or playing with other children. They may even actively avoid other children.
In middle childhood, such children may develop a greater awareness or attachment to parents and other familiar adults. However, social difficulties continue. They still have problems with group games and forming peer relationships. Some of the children with less severe PDDNOS may become involved in other children's games.
As these children grow older, they may become affectionate and friendly with their parents and siblings. However, they still have difficulty understanding the complexity of social relationships. Some individuals with less severe impairments may have a desire for friendships. But a lack of response to other people's interests and emotions, as well as a lack of understanding of humor, often results in these youngsters saying or doing things that can slow the development of friendships.
2. Impairment in Nonverbal Communication
In early childhood, children with PDDNOS may develop the concrete gesture of pulling adults by the hand to the object that is wanted. They often do this without the typical accompanying facial expression. They seldom nod or shake their heads to substitute for or to accompany speech. Children with PDDNOS generally do not participate in games that involve imitation. They are less likely than typical children to copy their parents' activity.
In middle and late childhood, such children may not frequently use gestures, even when they understand other people's gestures fairly well. Some children do develop imitative play, but this tends to be repetitive.
Generally, children with PDDNOS are able to show joy, fear, or anger, but they may only show the extreme of emotions. They often do not use facial expressions that ordinarily show subtle emotion.
3. Impairment in Understanding Speech
Comprehension of speech in children with PDDNOS is impaired to varying degrees, depending on where the child is within the wide spectrum of PDDNOS. Individuals with PDDNOS who also have mental retardation may never develop more than a limited understanding of speech. Children who have less severe impairments may follow simple instructions if given in an immediate context or with the aid of gestures (e.g., telling the child to "put your glass on the counter," while pointing to the counter). When impairment is mild, only the comprehension of subtle or abstract meanings may be affected. Humor, sarcasm, and common sayings (e.g., "it's raining cats and dogs") can be confusing for individuals with the most mild PDDNOS.
4. Impairment in Speech Development
Many infants with PDDNOS do not babble, or may begin to babble in their first year but then stop. When the child develops speech, he or she often exhibits abnormalities. Echolalia (seemingly meaningless repetition of words or phrases) may be the only kind of speech some children acquire. Though echolalic speech might be produced quite accurately, the child may have limited comprehension of the meaning. In the past, it was thought that echolalia had no real function. More recent studies have found that echolalia can serve several functions, such as self-stimulation (when a child says words or phrases repeatedly without a communicative purpose--just because it feels good); as a step between a child being nonverbal and verbal; or as a way to communicate (Prizant & Rydell, 1993). Other children develop the appropriate use of phrases copied from others. This is often accompanied by pronoun reversal in the early stages of language development. For instance, when the child is asked "How are you?" he or she may answer "You are fine."
The actual production of speech may be impaired. The child's speech may be like that of a robot, characterized by a monotonous, flat delivery with little change in pitch, change of emphasis, or emotional expression.
Problems of pronunciation are common in young children with PDDNOS, but these often diminish as the child gets older. There may be a striking contrast between clearly enunciated echolalic speech and poorly pronounced spontaneous speech. Some children have a chanting or singsong speech, with odd prolongation of sounds, syllables, and words. A question-like intonation may be used for statements. Odd breathing rhythms may produce staccato speech in some children.
Abnormal grammar is frequently present in the spontaneous speech of verbal children with PDDNOS. As a result:
· phrases may be telegraphic (brief and monotone) and distorted;· words of similar sound or related meaning may be muddled;· some objects may be labeled by their use;· new words may be coined; and· prepositions, conjunctions, and pronouns may be dropped from phrases or used incorrectly.
When children with PDDNOS do develop functional speech, they may not use it in ordinary ways. Such children tend to rely on repetitive phrases. Their speech does not usually convey imagination, abstraction, or subtle emotion. They generally have difficulty talking about anything outside of the immediate context. They may talk excessively about their special interests, and they may talk about the same pieces of information whenever the same subject is raised. The most able persons can exchange concrete pieces of information that interest them, but once the conversation departs from this level, they can become lost and may withdraw from social contact. Ordinary to-and-fro conversational chatter is lacking. Thus, they give the impression of talking "at" someone, rather than "with" someone.
5 .Unusual Patterns of Behavior
The unusual responses of children with PDDNOS to the environment take several forms.
6. Resistance to change
Many children are upset by changes in the familiar environment. Even a minor change of everyday routine may lead to tantrums. Some children line up toys or objects and become very distressed if these are disturbed. Efforts to teach new activities may be resisted.
7. Ritualistic or compulsive behaviors
Ritualistic or compulsive behaviors usually involve rigid routines (e.g., insistence on eating particular foods) or repetitive acts, such as hand flapping or finger mannerisms (e.g., twisting, flicking movements of hands and fingers carried out near the face). Some children develop preoccupations; they may spend a great deal of time memorizing weather information, state capitals, or birth dates of family members.
8. Abnormal attachments and behaviors
Some children develop intense attachments to odd objects, such as pipe cleaners, batteries, or film canisters. Some children may have a preoccupation with certain features of favored objects, such as their texture, taste, smell, or shape.
9. Unusual responses to sensory experiences
Many children may seem underresponsive or overresponsive to sensory stimuli. Thus, they may be suspected of being deaf or visually impaired. It is common for such young children to be referred for hearing and vision tests. Some children avoid gentle physical contact, yet react with pleasure to rough-and-tumble games. Some children carry food preferences to extremes, with favored foods eaten to excess. Some children limit their diet to a small selection, while others are hearty eaters who do not seem to know when they are full.
10. Disturbance of Movement
The typical motor milestones (e.g., throwing, catching, kicking) may be delayed but are often within the normal range. Young children with PDDNOS usually have difficulty with imitation skills, such as clapping hands. Many such children are very overactive, yet tend to become less overactive in adolescence. Children with PDDNOS may exhibit characteristics such as grimacing, hand flapping or twisting, toe walking, lunging, jumping, darting or pacing, body rocking and swaying, or head rolling or banging. In some cases the behaviors appear only from time to time; in other cases they are present continuously.
11. Intelligence and Cognitive Deficits
Generally, children with PDDNOS do very well on tests requiring manipulative or visual skills or immediate memory, while they do poorly on tasks demanding symbolic or abstract thought and sequential logic. The process of learning and thinking in these children is impaired, most particularly in the capacity for imitation, comprehension of spoken words and gestures, flexibility, inventiveness, learning and applying rules, and using acquired information. Yet, a small number of children with PDDNOS show excellent rote memories and special skills in music, mechanics, mathematics, and reading.
Because many children with PDDNOS are either without functional speech or otherwise untestable, some people question the validity of testing their intelligence. Moreover, it has been observed that a number of these children show major improvements in other developmental areas during the follow-up period without a change in their tested IQ. Follow-up studies have also shown that retardation present at the time of initial diagnosis tends to persist. Those children with a low IQ show more severely impaired social development. They are more likely to display unusual social responses, such as touching or smelling people, ritualistic behavior, or self-injury.
12. Associated Features
The emotional expression of some children with PDDNOS may be flattened, excessive, or inappropriate to the situation. For no obvious reason, they may scream or sob inconsolably one time, yet giggle and laugh hysterically another time. Real dangers, such as moving vehicles or heights, may be ignored, yet the same child might seem frightened of a harmless object, such as a particular stuffed animal.
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I copied and pasted this portion of it because this is exactly how I'm feeling.
"In fact, I remember that, despite knowing little about autism, I felt happy that Isabel had PDD-NOS instead of autism. I didn’t realize then that, over time, PDD-NOS would prove to be an ambiguous and cumbersome diagnosis, that it would morph into “autism” or “autism spectrum disorder,” and that I’d rarely use the term PDD again. Today, Isabel is simply a child with “autism”.
I found this great website today and wanted to save it here for my own resource and to share it with others. It also has a bunch of links to other helpful sites.
Monday, October 13, 2008
Here's the link:
John McCain bails on meeting with Jenny McCarthy
by Jennifer Jordan Oct 2nd 2008 2:03PM
Categories: Newborns, Babies, Pregnancy & birth, Health & safety, Medical conditions, Development, Life & style, Celeb parenting, Rumors, In the news, Mommy wars
Presidential nominee John McCain allegedly had a date set with actress Jenny McCarthy. The topic of their discussion? Not love but, rather autism, and specifically the link between the condition and the use of thimerosal in the vaccines McCarthy believes cause autism.
McCarthy was eager to meet with McCain after learning he believes there may be a link as well, and apparently flew herself out for a meeting with the Republican senator to try to make autism a major part of the presidential campaign.
According to reports, however, McCain backed out after his flack decided the subject matter was too controversial. Right, like presidential nominees should avoid discussing anything controversial! If they did all they'd end up doing at debates was drinking Yoohoos! Although not attributed anywhere, the post on IMDB claims McCain also bailed after learning there is no hard evidence linking vaccines with thimerosal and autism. Either way, McCain declined to meet with the former Playboy centerfold (huge mistake, dude!) and McCarthy has now set her sites on meeting with Senator Obama.
If there is no link to thimersal and Autism in vaccines, then why did Republicans sneak a midnight hour provision into the homeland security bill of 2001 protecting all vaccine manufacturers from class action law suits? Things that make you go HMMMM....
Join us at the 2nd Annual Comedy Night for AutismIt's Show Time!
Join us at the 2nd Annual Comedy Night for Autism Awareness presented by Point B Solutions Group!
Second Annual Comedy Night for Autism Awareness
Thursday, October 16th at 7:00 p.m.Dave & Buster's - Desert Ridge Market Place21001 N. Tatum Blvd., Phoenix, AZ 85050
Join Maureen Lombardo, associate with Point B Solutions Group-a professional services firm specializing in project leadership-as she shares her comedic perspective on relationships, parenting and the working world.
Your Headliner... Travis ThurmanAn Arizona resident of 35 years, Travis is a rising star in the world of stand-up comedy. He has opened for such notables as Bret Butler, Louis Anderson, Bobcat Goldthwait, and Ralphie May. A familiar presence on stages around Phoenix, Travis has been perfecting the art of improvisational comedy for eleven years, performing with the Oxymoron'z, Nothing Personal , the Tempe Improv and the Comedy Sportz. (His reputation for dead-on impersonations of celebrities like Michael Jackson and music artists like New Kids on the Block is near-legendary in several small neighborhoods in the Phoenix area.)
All proceeds to benefit the Autism Society of America - Greater Phoenix Chapter.
Tickets are $30 and are available to purchase on-line (click here) or at the event. For additional information, please contact Maureen Lombardo via e-mail or call (602) 357-6818.Additional sponsors needed! Ask Maureen about being a corporate sponsor!!
The Autism Society of America - Greater Phoenix Chapter (ASA-GPC) is a group of people (mostly parents) who are dedicated to improving the quality of life of children and adults affected by autism by providing information, resources and support to the community, and especially to families affected by autism. We welcome your support!
Friday, October 10, 2008
Here's the link:
Being a single mom, with an ex-husband that only sees our son once per week, it makes it hard to get things done without my son. I now live with my fiance and he helps out a lot, but with the way our schedules are I still end up running most of my errands with Joey. Most of the time, it works out well. Our trip to Trader Joe's reminded me of how hard it can be when Joey is having an off day.
The afternoon started out with me picking Joey up from preschool. He was very excited about the lizard he made and he wanted to show it to me. I love when he is so excited. He is just adorable. Then, we went to the car dealership to pick up a rental because my car need warranty work. He wanted to go in and watch the big TV but we didn't have time. Looking back, I should have appeased him for a few minutes because it might have made my day go smoother. Once we were settled into the rental, I realized he was starting to go into what I call the nap zone. Trader Joe's was around the corner so I figured I could get a quick trip in now for the stuff I needed for dinner that night. The rest of the afternoon would be taken up by our trip to the Melmed Center which is on the other side of town, so this was my only chance.
Joey apparently didn't want to be at the store and melted into a pile in the parking lot. I pretended to walk in so that he would get up. This instilled fear in him which is not what I wanted. As I walked back towards him, he ran towards me and then fell back into a pile in the doorway of the store. I picked him up and put him in the cart. He was hanging on the cart and crying hysterically. The cart was dirty and now his tear-streaked face was dirty too. Eventually he calmed down and after seeing a girl pushing a child-size shopping cart, he wanted to push one too (which he usually does). He was doing great and took turns putting groceries in my cart and his cart. Everything was wonderful until his wheel got stuck when he tried to turn and he got frustrated. This happened right in front of an employee who of course did nothing. He sank into a pile again and began to cry. These are the times when I need help and seem to have none.
I grabbed another employee and had him take the tiny cart, hurried up and finished my shopping and got out as soon as I could. Do you think people got out of my way when I said excuse me? No! They just stopped and stared at me because I had an upset child. I never do that to people. Little do they know what Joey is going through. I wish I understood how to help him more. I'm working on that.
Thursday, October 9, 2008
Friday, October 3, 2008
This is one of the best descriptions I have found that explains what Joey was diagnosed with. I sent it to family members when I told them of his diagnosis.
Here's the link:
What it Is Pervasive Developmental Disorder - Not Otherwise Specified, or PDD-NOS, for short, is a condition on the spectrum that has those with it exhibiting some, but not all, of the symptoms associated with classic autism. That can include difficulty socializing with others, repetitive behaviors, and heightened sensitivities to certain stimuli.
How it's similar to classic autism
Those with PDD-NOS behave like those with classic autism in many ways. First, they are all different (meaning one person with PDD-NOS doesn't act exactly like another; the same holds true for classic autism). When interacting with others, they may appear unemotional or unable to speak, they could have trouble holding eye contact, or they may have trouble transitioning quickly from one activity to the next.
How diagnosis differs
Those with PDD-NOS are different from others on the spectrum in one specific way: While they may exhibit some symptoms of those conditions, they don't fit the bill closely enough to fully satisfy all criteria set by the experts. Perhaps they started having difficulties at a much later age than others on the spectrum. (According to the National Dissemination Center for Children with Disabilities, they are often diagnosed between the ages of 3 and 4 years old.) Or they may have the same challenges — for example, they may be oversensitive to their surroundings — but not to the extreme that others on the spectrum do. Consequently, those with PDD-NOS are sometimes thought to have a "milder" form of autism, though this may not be technically true. One symptom may be minor, while another may be worse.
What To Do About It
According to the Yale Developmental Disabilities Clinic, treating children with PDD-NOS could prove tricky: Sometimes, they may not get the help they need as quickly as those whose behavioral patterns are more clearly definable as autistic. Healthcare providers may not provide a diagnosis of PDD-NOS until after they've considered all the other "types" of autism; in short, they may arrive at their conclusion after essentially a process of elimination.As with other conditions, it takes a village of doctors, psychologists, teachers, therapists, and family members to arrive at an action plan that would work best for someone with PDD-NOS. A "one-size-fits-all" approach usually doesn't work: A multi-pronged regimen may be the most advisable. These treatments could include:
Various behavioral regimens, including play therapy, Applied Behavior Analysis (ABA), sensory integration therapy, and more
Medications, including anti-depressants
Social skills training, which teaches children how to interact with their peers for specific situations
Alternative therapies such as martial arts therapy, wherein they flex their muscles literally and figuratively (they get stronger and learn how to function in a group setting); music therapy, which has kids learning how to communicate with the help of songs; or facilitated communication, in which children are taught to use computers or other equipment to make their thoughts known, especially if they have trouble expressing themselves verbally. (It supposedly is helpful to some children with PDD-NOS, says the National Dissemination Center for Children with Disabilities.)
Like other parents with children on the spectrum, you will face many challenges, starting with the incomprehension and insensitivity of others unfamiliar with your situation. They may think your child is "misbehaving" and, consequently, deem you a parent unable to "control" him. This may be especially true because PDD-NOS kids don't fit into the more easily identifiable forms of autism spectrum disorders. Ignorance can bring out the worst in others, and sometimes, when they're not privy to your child's issues (or simply don't understand them or won't accept the diagnosis, as happens in some families), they may be more judgmental.
That's why it's important to surround yourselves with friends, family members, teachers and healthcare providers whom you trust. Be sure that the lines of communication with and among them are clear; you will be relying on them through the many ups and downs of life with a PDD-NOS child. If you're the primary caretaker (meaning you spend the most hours with your child), you'll need to make time for yourself, too. Caring for others can be draining, and you won't be able to give much if you don't replenish your own stores of energy and look after your physical, emotional and spiritual needs. Ask your child's healthcare providers for referrals to support groups so you can meet parents of other children on the spectrum; or go online — many parenting Web sites have bulletin boards for children with special needs, and Autism Speaks has online forums as well.
Structure is helpful for children on the spectrum, so take this into consideration when deciding what events to attend or places to go. Preparation is key, so let your child know what to expect before the situation takes place or they reach their destinations. Consistency also helps, so check in with your healthcare team before starting or stopping a regimen. As children grow older and become more aware of the limitations that their condition has placed upon them, it may be helpful for them to receive counseling with a therapist trained in dealing with pervasive developmental disorders. As difficult as it is for parents to go through this journey, it's even harder for the children themselves who have to work through their own personal challenges and other people's ignorance as they make their way in the world.
How to Grow With It
Teens & Adults Adolescence is hard enough for children who aren't on the spectrum, so you can imagine the challenges that teens (and even adults) with PDD-NOS face. They're equally hampered by hormonal fluctuations, but also have to take on the complicated (and sometimes cruel) social habits of their peers even though they don't have the full complement of skills to do so. Dating will be thorny — though some may ignore this rite of passage altogether — and friendships, so simple for young children, may prove to be more daunting. This is why your child may need more support at this stage than ever before, especially as they grow more aware of their own condition. A counselor trained with dealing with teens on the spectrum can help immensely, as will knowing that you're by their side every step of the way as they learn how to navigate a bigger and more complex world.
It's difficult to predict how easy — or hard — life will be in the long run for a person with PDD-NOS, as much depends on the severity of his or her symptoms and how he or she reacts to therapies. But if, like many others, the condition is on the "milder" side of the spectrum, your child will likely be able to care for himself or herself while growing older. Marriage and parenting may prove overwhelming for some, though not necessarily for all of those with PDD-NOS. The good news: It's possible to enjoy a full, if complicated, life.
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Autism Speaks Joins the Arizona Autism Community in Hailing Governor Janet Napolitano and State Legislators for Enacting Autism Insurance LegislationArizona Becomes Latest State to Revise its Insurance Laws to Require Coverage of Evidence-Based, Medically Necessary Autism Therapies
NEW YORK, NY (March 21, 2008) -- Autism Speaks today joined Arizona families and other autism advocacy organizations in applauding Governor Janet Napolitano and the state's legislators for enacting House Bill 2847, which will require insurance carriers to provide coverage of evidence-based, medically necessary autism therapies. In many states, insurers explicitly exclude coverage of these therapies from policies, which places a significant financial burden on families seeking to provide their children with necessary services. Autism Speaks has launched a multi-state initiative to address this discrimination.
The new Arizona law requires insurers to cover up to $50,000 a year for Applied Behavior Analysis therapy for children until age nine, and $25,000 a year for children until age sixteen. It covers therapy for children whose diagnoses reflect the full range of the autism spectrum. Applied Behavior Analysis (ABA) is recognized by the American Academy of Pediatrics and the U.S. Surgeon General, among others, as an effective, evidence-based treatment for children with autism.
“Every state in the nation, and every Governor, is facing the same struggle to meet the treatment needs of this growing population,” said Governor Napolitano. “In my view and in the view of the families who have struggled to pay for necessary treatments for their children with autism -- often resulting in bankruptcy or families joining the state welfare rolls -- HB 2847 is a necessary insurance update to cover essential treatments for these children.”
With the enactment of this legislation, Arizona joins the ranks of states that have recognized the unfair and unreasonable burden being imposed on families of children with autism,” said Elizabeth Emken, Autism Speaks vice president for government relations. “These families are either going broke trying to provide services for their children or stitching together inadequate treatment plans because they simply cannot afford the help their children need and deserve. That is about to change.”
The passage of this legislation was the result of a grass-roots advocacy effort led by hundreds of committed families with the support of local and national advocacy organizations, including: the Autism Society of America, Greater Phoenix Chapter; ASA Pima County and Northern Arizona Chapter; Supporting Autism Now through Education (SANE); Asperger Parent Network; Arizona Autism Coalition; Arizona Autism Support; Southwest Autism Research & Resource Center (SARRC), Recover our Kids (ROK), and the Center for Autism and Related Disorders (CARD), among others.
“This new law is a great victory for Arizona families and those living with autism,” said Lisa Glow, CEO of the Southwest Autism Research & Resource Center (SARRC). “We are especially pleased that the legislation includes coverage of therapies for individuals with Asperger's Syndrome and Pervasive Developmental Disorder (PDD), in addition to autistic disorder. All children on the spectrum can make improvements with treatment, so no category of children should be excluded or discriminated against.”
“The autism community came together in support of this legislation in a way that was unprecedented,” said Gretchen Jacobs, a lobbyist -- and mother of a four year-old girl with autism -- who worked on the legislation. “Family members from around the state made phone calls, wrote letters and walked the districts of lawmakers. It was a coordinated campaign that brought out the best in our community.”
The legislative effort began as “Steven's Law”, sponsored by Democratic Sen. Amanda Aguirre of Tucson (Senate Bill 1263), and named after the son of Char Ugol, the mother of a child with autism. The bill was then amended onto House Bill 2847 sponsored by Rep. Bill Konopnicki.
Wednesday, October 1, 2008
McCarthy believes diet and vitamins helped her son recover from autism
Vaccines played a role in son's autism, she says
McCarthy and Jim Carrey think children being given too many vaccines, too soon
By Jenny McCarthy and Jim CarreySpecial to CNN
Editor's note: Jenny McCarthy and Jim Carrey are actors and parents actively involved in autism-related causes. McCarthy is the author of the book "Louder Than Words: A Mother's Journey in Healing Autism."
Actress Jenny McCarthy believes that vaccines could have contributed to her son's autism.
(CNN) -- In light of the recent Hannah Poling decision, in which the federal court conceded that vaccines could have contributed to her autism, we think the tide is finally turning in the direction of parents like us who have been shouting concerns from our rooftops for years.
Autism is a debilitating disorder, which according to the Centers for Disease Control and Prevention, is suffered by 1 in 150 kids, making it more common than childhood cancer, diabetes and AIDS combined.
Recently, England and Ireland reported that autism is affecting one in 58 individuals.
Is it any wonder that autism has become many new parents' No. 1 fear?
We've met some of the most amazing moms and dads who are forging their own path to prevention and recovery. When our son, Evan, was diagnosed with autism we were lucky enough to benefit from their knowledge and experience. Evan has been healed to a great extent by many breakthroughs that, while perhaps not scientifically proven, have definitely helped Evan and many other children who are recovering from autism. Parents vs. scientists: Watch the latest test case »
There are some who wonder what we mean when we say "recovering" from autism. They confuse the word recover with cure. While you may not be able to cure an injury caused in a terrible car accident, you can recover; you can regain many skills that you once lost. In the case of autism, we think there are treatments that often bring about such healing, so that the observable symptoms of the condition no longer exist. Even though we may no longer see any symptoms of autism, we can't say a child is "cured" because we do not know what they would have been like had they never been injured.
We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines. Once Evan's neurological function was recovered through these medical treatments, speech therapy and applied behavior analysis helped him quickly learn the skills he could not learn while he was frozen in autism. After we implemented these therapies for one year, the state re-evaluated Evan for further services. They spent five minutes with Evan and said, "What happened? We've never seen a recovery like this." Watch Jenny McCarthy talk about her son's autism »
Evan is now 5 years old and what might surprise a lot of you is that we've never been contacted by a single member of the CDC, the American Academy of Pediatrics, or any other health authority to evaluate and understand how Evan recovered from autism. When Evan meets doctors and neurologists, to this day they tell us he was misdiagnosed -- that he never had autism to begin with. It's as if they are wired to believe that children can't recover from autism. Watch CDC chief on vaccines, autism »
So where's the cavalry? Where are all the doctors beating down our door to take a closer look at Evan? We think we know why they haven't arrived. Most of the parents we've met who have recovered their child from autism as we did (and we have met many) blame vaccines for their child's autism.
We think our health authorities don't want to open this can of worms, so they don't even look or listen. While there is strong debate on this topic, many parents of recovered children will tell you they didn't treat their child for autism; they treated them for vaccine injury. Read about latest fight over vaccines and autism
Many people aren't aware that in the 1980s our children received only 10 vaccines by age 5, whereas today they are given 36 immunizations, most of them by age 2. With billions of pharmaceutical dollars, could it be possible that the vaccine program is becoming more of a profit engine then a means of prevention?
Commentary: The CDC's view on autism
Vaccine-autism link divides parents and scientists
iReport.com: Living with Autism
In Depth: Unraveling autism's mystery
CDC: Autism information center
We believe autism is an environmental illness. Vaccines are not the only environmental trigger, but we do think they play a major role. If we are going to solve this problem and finally start to reverse the rate of autism, we need to consider changing the vaccine schedule, reducing the number of shots given and removing certain ingredients that could be toxic to some children.
We take into account that some children have reactions to medicines like penicillin, for example, yet when it comes to vaccines we are operating as if our kids have a universal tolerance for them. We are acting like ONE SIZE FITS ALL. That is, at the very least, a huge improbability.
Even if the CDC is not convinced of a link between vaccines and autism, changing the vaccine schedule should be seriously considered as a precautionary measure. (If you would like to see some ideas for alternative schedules, check out http://generationrescue.org/.)
We wish to state, very clearly, that we are not against all vaccines, but we do believe there is strong evidence to suggest that some of the ingredients may be hazardous and that our children are being given too many, too soon!
The opinions expressed in this commentary are solely those of the writers. E-mail to a friend
Here's the link to the article.
Jenny McCarthy slams Amanda Peet!
1 Oct 2008, 1353 hrs IST, ANI
American actress Amanda Peet has earned herself the ire of American model Jenny McCarthy for her comments regarding parents who choose not to have their children vaccinated. In a recent interview, Amanda had referred to parents who did not choose to vaccinate their children as “parasites”. Though she later tried to make amends by apologizing to parents of autistic children who believe that vaccines may have caused the illness, the apology did not make any impression on Jenny, who has a six-year-old son suffering from autism. “She (Amanda) has a lot of [nerve] to come forward and be on that side, because there is an angry mob on my side, and I like the fact that I can say she's completely wrong,” Fox News quoted Jenny McCarthy as having told Spectrum magazine . “I look at (Amanda) now and say to myself, ‘That was me before I had autism in my life,’ and until she walks in our shoes, she really has no idea,” McCarthy added. Besides McCarthy, the national autism advocacy group Autism United has also expressed anger at Amanda’s comment, and called for a boycott of all of the actress’ movies. McCarthy and her long-time lover Jim Carrey have continued their crusade this past summer, and led a rally of thousands in Washington, D.C., to put pressure on the federal government to remove toxins from vaccines and fight for fewer childhood vaccinations prior to the age of two.
For me, being new to the world of Autism, it was a little overwhelming. I received a wealth of information but felt like such a novice because I didn't know about some of the things they were talking about. It was frustrating. One of the main points from the evening that left me the most bewildered is that since Joey didn't get the Autism diagnosis, he won't get any help from the State of Arizona (which I already knew) but that leaves him out in the cold from getting so many services and therapies.
I meet again with the behavioral pediatrician on October 9th. I will see if she can guide down a more structured path of treatment for my precious little boy.
Wednesday, September 24, 2008
Building life, love, relationships and parenting on experience learning and communication by Bryan Hogan
My step-son was recently diagnosed with PDD-NOS. This is an Autism disorder that can not be classified. He is a very intelligent and loving kid and exhibits Autism like characteristics. Stepping into a shattered life from a divorce, especially when there is a child involved is daunting. I have learned a lot in this last year, but each day I realize how much more there is to learn.
If only there were a manual or a class I could take, maybe that would make it easier, of course, there is not and we have to learn by experience. Experience learning is often times very painful and straining on relationships. Each parent pulls from their past experiences and tries to parent the best they can by what they learned when they were raised.
Often the parents disagree on what they believe to be in the best interest for the child and their relationship with one another. This of course can be attributed to the different parenting styles and life paths they took before coming together. With a child with a development disorder, it is infinitely more difficult to come to agreement and figure out what is best for everyone. These parents must forget what they have learned in the past and how they were raised. Each child is unique and it takes teamwork to survive.
Building a relationship based upon communication and teamwork is tough. Our days are filled with snxiety, stress, and exhaustion. Whether it be that we are driving an hour and half to work in bumper to bumper traffic, racing across town to get to an appointment, buying a house and creating a home, or worry about loosing a job and how to pay the bills, there are many emotions that keep you on a roller coaster ride from the time you wake up to the time you collapse at night.
With the exhaustion and frustration of the day, coming home at night to our loved ones is all that matters. Even though you both are exhausted, you must come together and talk. The never ending task of building your relationship and growing your love for each other is a high priority. Very few people like to be alone, and especially when you find that special someone, your only concern is growing that love, respect and relationship with them.
Because communication breaks down over the emotions of the day, it is hard to find the time to connect with one another and talk, even though it is of upmost importance. Each of us have our own way of dealing with our stressors, some like to read gossip on their computer or play with MySpace, and others need quiet time with a book or a movie.
Alone time is important, but you must find the time for each other and reconnect or else the other will feel that an effort is not being made and love is lost. It is very important to be open and communicate with each other. It is important to find true relaxation and inner peace in each other, if not the relationship may become strained and the stressors of the day get heavier and eventually explode. You need someone to listen and love.
No matter how much you put forth into your relationship and being a parent, you are always going to make a mistake. I have made many and unfortunately because I am not perfect I will make more. Relationships will be strained and miscommunication will happen. It is important that you find the time and reconnect. It is also important to let the other person know what is on your mind and what is driving your actions.
Without an open and communicative relationship it is difficult to build your love, respect for one another and your relationship. You’re building a family, a home, a career, a balance sheet and a life together. So stay in contact with one another and let them know how you feel. It takes more than one person to live life. It takes teamwork. It takes love and above all else it takes communication and understanding.
Spend some time with your loved ones today, forget about the stressors of the day and continue your journey together. Only your team will succeed. It is important to us that our son has everything he needs, our love, our affection, our strength and our family. These are all built on communication and love.
Today, I am going home to my beautiful fiancé and my soon to be step-son. I will have forgotten the stressors of the day and I will be open with them and make sure they know how much they mean to me. I will ask my fiancé for forgiveness for not knowing it all yet, and for making mistakes. I will tell her that I love her without question and until the end of time. I will promise to her that each day I will work to become a better man for her and our son. They deserve it, especially my little buddy.
I will take our son in my arms and give him a big Spiderman hug. We will fly like Batman and we will sit together watching Buzz Light Year save the galaxy 5 times. I will make sure he knows that I am there for him and I will make sure he feels the love I have for him and his mother.
Monday, September 15, 2008
Today, we have the ADOS scheduled with the psychiatrist, Dr. Cho. ADOS stands for Autism Diagnostic Observation Schedule and is considered the "gold standard for assessing and diagnosing autism and pervasive developmental disorder (PDD) across ages, developmental levels and language skills," (Western Phsychological Services, 2008). The test consists of 4 modules with only one module being given based on a person's expressive and chronological age. The test helps observe how a person socializes and communicates during different activities.
As with the 1st appointment, I was impressed with how well Joey did.
Western Psycholgical Services. (2008). ADOS. http://portal.wpspublish.com/portal/page?_pageid=53,70384&_dad=portal&_schema=PORTAL
Today was our 1st appointment at the Melmed Center. We met with Dr. Deocampo who is a behavioral pediatrician.
Over the last few months, both my Mom and I have noticed a change in Joey's behavior. He has pulled away from my parents, who he has known since birth; he no longer runs to me when I pick him up from school; he doesn't want me to leave him anywhere; he doesn't want to see his Dad at all; and he's started to go back into his shell at school. It's time to get a medical opinion.
I made an appointment with his primary pediatrician who he's known since he was born and who I adore. I even refused to find a new doctor when they dropped my insurance company and pay cash now just so I can continue to see the same doctor. She felt that it was best to get another opinion and referred me to the Melmed Center, which is the best place to go in Phoenix. She advised me to call right away because I may have to wait 6 months for an appointment.
I called that very day and left a message regarding an appointment. Then, my Mom and I went looking at Churches for my upcoming wedding. She knelt down and prayed while we were in the Church and afterwards, she told me that she prayed to her father (who passed away in 1972) to watch over Joey. The next day, I got a call from someone at the Melmed Center. They said they had an opening for an appointment on August 18th. I didn't have to wait 6 months after all! The interesting thing is...August 18th is the anniversary of my Grandfather's death. I guess he was watching over Joey after all.
Saturday, September 13, 2008
Wednesday, September 3, 2008
Tuesday, August 19, 2008
During his second year, Joey was noticeably quiet. As friends' children the same age were advancing with their speech, Joey was not. He was more advanced than other children when it came to everything else so I wasn't worried. As his second birthday approached, my Mom voiced her concern that he wasn't repeating after us. I spoke to his pediatrician who ordered a hearing test and a consultation with an ENT. The audiologists were concerned and wanted to see him back for a retest when the middle ear fluid cleared up, while the ENT thought it was too soon to put tubes in his ears. The audiologists also hooked me up with a program through the state to get Joey started with speech therapy, which I started shortly after Joey's 2nd birthday.
I had Joey's hearing retested in March '07 and again I was told to bring him back when there was no middle ear fluid. He was prone to ear infections but was not having one at the time of the test so how was I to know when the middle ear fluid was present? I brought him back to the ENT, who finally agreed to place tubes in both ears. Joey had his surgery a few weeks later and on the very same day, he started repeating after us!
The ENT said Joey had "glue ear" because the middle ear fluid was solidifying. He heard everything as if he were underwater. I can't imagine what that was like and feel terrible for not catching it sooner. When your children don't have a voice, parents need to be their voice and I failed my son by not being his soon enough.