From Good Karma Applications

Okay, so here is our first app review. The app is called “Scene Speak.” It’s a very simple concept. A parent can program areas of an images to play recorded audio when clicked, thereby creating a sort of interactive digital book. You can use the pre-loaded images that come with the app, but it’s better to load your own pictures. That way, you can help your child learn audio that will actually help his or her development.

Some things we didn’t put in the video:

I’d like to see more flexibility with the audio and video files down the road. The layout of the app is not very intuitive, and it’s confusing to try to duplicate audio into different pictures.

Over all, though, we dig this app. Again, it’s $14.99, and you can grab it from the App store by clicking on our link:

Or you could just download it on your iPad from the App store. We hope you like it as much as we do!

They’re really not exaggerating. There have been a plethora of articles written on this subject, like this one, and this one. So we decided to get an iPad 2 last month for our son. After all, he had already learned a bunch of numbers and colors from some simple apps on my iPhone. The interactivity factor would be even better on a larger screen.

So for the last six weeks, we have been experimenting with different apps, seeing which ones he likes, and which ones he is progressing with. The results so far have been extremely encouraging.

We want to share what we’re finding in the form of video reviews over the coming months. We will choose an app we have been using, show you how it works, and tell you what we like about it, etc. Has our son learned things from it? Does he enjoy it? We’ll bring you in the loop, and offer a link to the app store. (Full disclosure: we would make a small commission if you use that link to buy anything. Anything at all

We will start with a simple app called Scene Speak.

For other children like our son, autism doesn’t seem to strike until later, and many of them experience cycles of regression and recoupment. Doctors suspect different underlying causes when regression happens later than 2 years of age. Our son’s autism specialist and developmental pediatrician both suggested that we look into what they considered the three main causes of late-onset autism and cycles of regression: seizure activity, metabolic disorders, or mental retardation.

What does the initial regression of late-onset autism look like?

With late-onset autism, many children experience either a sudden or gradual loss of skills such as speech, social, cognitive, and fine or large motor skills after typical development in those areas, usually after 2 years of age.

In our case, our son developed typically, other than two tell-tale developmental milestones: pointing, and bringing objects to show an adult. Otherwise, he engaged socially, surpassed physical milestones early, and even had average vocabulary development.

Our other children were early talkers, and when my son did not have the vocabulary explosion I was used to seeing between 18 and 24 months, I started asking other parents, and even brought it up at his two-year checkup. He was our first boy, and everyone assured me that boys often taken longer to talk, so I just waited.

Shortly after my son turned two, I noticed he wasn’t using some of the 30 words and phrases he used to. Within a couple of months, Jack had lost all but two phrases, “Jack all done” and “Jack ready to get down.”

Along with this loss of speech, he had developed a rash around his mouth, and over the next 5 months we watched our happy, easy-going son turn somber and withdrawn. He was still content, in fact, he seemed not to care about anything. Prefering to sit in the corner and stare out the window than engage in a game of tackle with Daddy seemed like an odd choice for a toddler. We called it his “toddler depression,” and did our best to pull him into activities we thought he would enjoy, usually without success.

He stopped playing with toys and instead prefered to hold shiny, metal kitchen utensils. He’d never been a thumb or passifier sucker and hardly ever put anything in his mouth as an infant, but now he started mouthing things like metal utensils, sticks, and even rocks.

If he needed food or water, he would usually try to get it himself. If that failed, and he was really hungery or thirsty, he would grab us by the finger and pull us toward the kitchen, but never asked, whined, or pointed to indicate specifically what he wanted. Just stood there in front of the fridge or cupboard and waited.

Jack slid deeper and withdrew more and more from us. He seemed completely unaware of where we were or when we left the room. He would wander away aimlessly from us without any concern. He avoided making eye contact with us. He seemed to be spending more and more time in his own little world.

When he started avoiding physical touch, hugs, and holding our hands, I was alarmed and determined that he would stay connected and maintain at least that basic relational need: physical touch. We had no formal diagnosis of autism or any other disorder, but we knew this disconnect was not normal, and was definitely not okay.

We were determined to pull our son back into our world any way we could. The next article describes our efforts to reverse this withdrawn, disconnected state in our son through re-bonding strategies.

At about 20 months, Sam suffered a head injury requiring stitches we found ourselves standing in our new pediatrician’s office, faced not only with stitches, but the realization that he was susceptible to tetnus. After agonizing, I decided not to immunize that day. The Pediatrician clearly expressed their stance as a “medical group” and handed me a paper on why Dr. Sears’ alternative schedule is not backed by scientific research and could be opening us up to world-wide epidemics, etc. After reading and considering it carefully, I wrote my own rebuttal to this paper:

I have actually never read Dr. Sears’ vaccine book nor have I Looked at his alternative schedule for administering vaccines. I understand the global perspective on the importance of continueing to vaccinate to prevent diseases that are still alive in parts of the world and easily spread especially considering the frequency of world wide travel.

I had my first two children fully vacinated and my third up until he developed symptoms of autism. My fourth was vaccinated up to four months and not after because of heart surgery and the discovery of our other son’s autism.

My own mother was drastically affected as an adult by polio which she contracted in 1952 as an 8 year old. I’ve seen the effects of a disease that we now have eradicated in the US because of vaccines, and I understand the importance of keeping our guard up by continueing to vaccinate for diseases that are no longer present in our country.

That said, I believe this rebuttal to Dr. Bob’s suggested alternative vaccine schedule and related book fails to address the very real fact that A) Every individual body varies in its ability to tolerate and eliminate toxins. B) Children with autism often have additional gastrointestinal, digestive, and other metabolic problems that may inhibit their ability to tolerate and eliminate toxins. At the very least, many of these children have displayed greater intolerance and sensitivity to foods, drugs, and chemicals that typical children tolerate easily. Is it unreasonable to question whether their bodies might also be incapable of handling a typical vaccine schedule?

I am so for evidence-based medical and educational intervention, but would anyone deny that research in the field of autism is still lacking clear explanations and definable results, that even a basic understanding of why it is occuring in such rapidly increasing numbers is not yet fully agreed-upon by the medical and scientific communities, not to mention a definable cause or causes is not yet apparent or universally accepted. The most logical argument I have read so far indicates that there may be a variety of causes (not just immunizations) in individuals who are already genetically susceptible and/or neurologically impaired.

The possibility of a variety of causes or a combination of “triggers” only vague genetic indicators that precede the onset (particularly later-onset) of autism also makes repeatable trials and reliable research an overwhelmingly complex task and well nigh impossible.

My personal arguement against immunizing my second son is based on the research that indicates the increased risk of having a second child with autism. If my second son’s systems are somehow compromised, if there is a possibility that he is unable to tolerate and eliminate toxins that typical children are, I cannot in good conscience take what I see as a gamble on his health by pumping his body with immunizations. I say the same thing about everything and excesses of thisngs that may be harmful or difficult to eliminate to the extent that I am aware: pesticides, artificial coloring and sweeteners, harsh chemicals, soaps, and processed foods, etc.

I recognize that he is at this moment at risk for vaccine-preventable diseases, so I am torn. I would like to give the most urgent vaccines first and spaced apart.

If you had a child with autism and were faced with my decisions to immunize my second son, what would you do if you were in my shoes?

At Sam’s follow-up appointment, I finally expressed my conflicts, and asked for a prioritized list of immunizations, which he reluctantly gave me. I was determined to give him one vaccination per visit. Many of the vaccinations come only in a combined form. It’s difficult if not impossible to obtain single-vaccines anymore. We are currently getting his vaccinations in the one-per-visit form in the order he deemed most vital, and not worrying about the ones considered “less vital.”

When my son was diagnosed with autism at age three, we had already been aware of potential food sensitivities or allergies and had begun by removing dairy products and later wheat from his diet. Dairy proved to make the biggest impact on his behavior. Within the first few days of removing dairy from his diet, eye contact improved, tantrumming lessoned, head banging stopped almost completely, he was more interactive, and his eczima and rashes cleared up considerably. A few months later we removed wheat and saw a smaller, but still significant improvement in behaviors and the rash around his mouth finally cleared up completely.
After my son’s diagnosis, I was desperate for anything that would help him. I was doubtful of anything that promised to be a cure-all, but I did a lot of research on the GFCF diet (Gluten Free Casein Free).

The why behind the diet: Many children with autism have some metabolic problems. Researchers are learning that these problems can contribute to autistic behaviors. One of these metabolic issues can be an inability to break down the gluten and casein proteins.

So why do gluten and casein make such a big impact on behavior for many children with autism?

Research done in Norway, England, and the United States have found the products of broken down gluten and casein proteins in the urine of autistic children. These proteins are called peptides. Peptides are found in the urine when opiates are present in the body. Opiates cause the child to act as though they are on opiate drugs: visual and auditory perceptions are altered, their brains are operating as though “in a fog,” they will sit staring, be unresponsive, and often display inapropriate laughter, headbanging, and increased stimming. Other symptoms of autism are often magnified as well after ingesting the offending protein.

The GFCF diet isn’t easy, but is it worth it? Parent’s like me who’s children have come out of the fog, and are progressing better than ever before would tell you it is. Some of these children have even been “undiagnosed.” Is the GFCF diet the magic bullet for all children with autism? No. Some responded minimally or not at all, but I have talked with parents who have watched their child go from “completely non-verbal, with severe behaviors and sensory issues,” to being able to attend mainstream school with their peers and their teachers being unable to tell they had an autism diagnosis. Removing offending foods poses no danger to your child, and the changes might just change your child’s life.

So give GFCF a fair trial. Certainly don’t give up simply because you experience resistance to the new changes. You WILL see behavioral issues if Charlie is denied his favorite McDonald’s chicken nuggets. So count on it, but don’t let behavioral challenges discourage you. Charlie might just be able to thank you some day.

What is Autism?
Autism is still a largly mysterious label for a list of symptoms. Recent research has uncovered a genetic indicator in children with autism, and most doctors and neurologists now agree: it is not a result of poor mothering or lack of bonding that it was unjustly attributed to 50 years ago, but rather a neurological disorder that effects a person’s social, cognitive, motor, and sesory systems. Much more research is being conducted, and we hope to have new insights on the underlying causes of autism in the near future.

What does a person with autism look like?
Autism looks different in every person it effects, depending on the severity and underlying potential causes. Because of the variances in severity, autism is now known as Autism Spectrum Disorder. Those who fall on the mild end of the Autism Spectrum may display abnormal social development and a few Obsessive Compulsive Behaviors, but reach speech and physical developmental checkpoints at an average or even above average rate, and can pretty much blend in with their peers. Whereas someone on the severe end of the spectrum may appear to have severe cognitive, social, and physical impairments, displaying no language, severe reactions to sensory stimulation, and appearing to be exclusively in their own world. All along the spectrum are innumerable combinations and variations of what we list as symptoms of Autism Spectrum Disorder (ASD). An oft repeated quote in the autism community is, “If you’ve know one autistic person, you know one autistic person.”

What are some indicator’s that my child might have a food allergy or sensitivity?
Food allergies and sensitivities can cause excima, rashes, irregular bowels, cause negative behaviors like tantrumming, hyperactivity, increased stimming, more frequent withdrawel, and disrupted sleep.

My son tested negative for the top 20 food and environmental allergens, but had a high IgE, indicating a potenâl allergy to something, and his doctor recommended eliminating one food at a time to see if we observed any changes in behavior, rashes, bowel movements, or sleep patterns.

Within a few days of removing dairy, we saw major improvements in eye contact, responsiveness and attempted communication, and sleeping. Head banging, random cries of pain, and rashes all but disappeared. A few month’s later, we removed wheat and saw smaller, but steady improvements overall.

Once we saw that our son was responding well to the removal of dairy and wheat, we decided to try the Gluten Free and Casein Free diet. Removing foods your child may be sensitive to isn’t easy, but it’s worth it if it improves your child’s overall health, behaviors, contectedness, and social skills.

Many pediatricians are now giving developmental questionnaires at every regular check-up now as a part of an effort to screen and catch autism and other disorders and begin early intervention efforts. Early intervention is proving to be a vital key in the progress of children with Autism Spectrum Disorder (ASD) and other disorders. The younger a child is diagnosed, the sooner he or she can get essential medical and educational intervention that could have a more positive long term effect. If she doesn’t provide a checklist, ask your pediatrician about it, and check out our developmental questionnaire.

18 month checklist:
Does your child…
Point to objects?
Bring you items to look at?
Play with siblings or peers?
Look at your face (in your eyes) when called?
Follow your pointed finger and eye gaze to an object on the other side of the room?
Participate in “pretend play” such as feeding a doll, pretending to talk on a phone, flying a toy airplane?

Do you feel your child’s language development is delayed or has slowed down?
Is your child unable to follow a simple command like, “Go get your shoes.”
Does your child avoid looking into your eyes?
Does your child avoid being touched or held?
Does your child answer when you call his or her name?
Does your child appear to have a hearing loss?
Does your child appear distracted?
Does your child have an unusually long attention span for any one particular thing?
Does your child often appear to be withdrawn, in his or her own world?

Is your child:
getting stuck on one sound, word, or activity?
appearing obsessive about lining up toys or stacking objects?
not pointing to objects of interest?
showing little desire to interact socially?
not bringing items to showing an adult?
not pointing to request something or to ask for the name of an object?
apparently unaware of how to play with toys?

Other medical issues that frequently occur in children with autism are:
Frequent ear infections
Exima
High fevers or frequent fevers
Reflux
Seizures
Sleep apnea, night terrors
Chronic diarrhea and/or consitpation
Irregular bowel movements
Language delay
Asthma
Allergies Frequent upper resperatory infections

Of course, don’t use this checklist as a diagnostic tool. If your finding alot of areas of concern, all that means is that you should probably talk to an expert, particularly a developmental pediatrician, and let him see all the things you have observed. Many of these medical issues could potentially point to underlying causes of autism, behavioral responses, and best courses of treatment for people with Autism Spectrum Disorder. Further research into the correlation of these issues and autism will hopefully yeild more answers to improving the lives of people with Autism Spectrum Disorder.

Unraveling the Mystery of Autism and Pervasive Developmental Disorder

A Mother’s Story of Research and Recovery

by Karyn Seroussi

Compelling story depicting the potential transformation from the use of the Gluten Free Casein Free Diet, ABA and other behavior therapies in school and at home.

Thinking in Pictures: My Life with Autism

by Temple Grandin
Insightful thoughts from famous inventor and author, Temple Grandin who explains how she and many people with autism are visual thinkers and the impact that makes on learning and viewing the world around them. If you’ve not heard of Grandin, she recently had a movie made about her starring Claire Danes. Anyway, we put up a video of one of her lectures here. We will certainly be referencing Dr. Grandin often on this site. She’s an interesting lady, to say the least!

Healing and Preventing Autism: A Complete Guide

by Jenny McCarthy and Dr. Jerry Kartzinel
A broad overview of biomedical interventions that have contributed to the recovery of Jenny McCarthy’s son. Presented in a casual, interview format. McCarthy, of course, is a leading autism advocate, and founder of Generation Rescue. Many people consider her to be on the fringe, but she deserves a listen at least. Dr. Kartzinel makes a pretty compelling case.

Enzymes for Autism and Other Neurological Conditions

by Karen L. DeFelice

A mother and educator shares their family’s success with using digestive enzymes and their positive physical and behavioral effects.

Autism Handbook for Parents: Facts and Strategies for Parenting Success

by Janice E. Janzen

An informational overview of treatments, services, educational interventions, and strategies for parenting children with Autism.

So there is the beginning of our reading list. If you have recommendations, please leave a comment and let us know!