A Ventography!

Just two moms letting off some steam


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16 years later

A Ventography!:

We thought this was a great post about reflecting on autism after living it for 16 years. The author gives an honest look at what it’s really like to deal with autism.

Originally posted on Lisa Ackerman - Real Help Now:

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By Holly Bortfeld

My son Max was diagnosed with autism 16 years ago today, May 4, 1998. I have been mulling around in my head for a few weeks how I wanted to mark this anniversary of autism entering our lives and had drafted a blog but I didn’t like it. I kept poking at it and it didn’t get better. Just sadder. More bitter.

I was focusing on “lessons learned” in the autism community and frankly, it was just depressing. Little has changed for the positive, many things have gotten worse. Incidence has risen, funding has gone down, there is still a media blackout of the reality of “real autism”, our government hasn’t done anything, waiting lists are longer, services are cut everywhere, and our kids are still neglected, abused, bullied, sick, wandering and dying. Parents are still broke, exhausted, marginalized, heartsick.

I thought I’d take a break to…

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TYLENOL IS LINKED TO MORE THAN ADHD… WHAT THE MEDIA ISN’T TELLING YOU!

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We have been talking about this topic since January of 2012 (click here for article). However, we were excited to see that today, 2 years later, the story has reached the mainstream media.

The Journal of the American Medical Association (JAMA) concluded from their study of 64,322 live-born children and mothers enrolled in the Danish National Birth Cohort during 1996-2002 that, “Maternal acetaminophen use during pregnancy is associated with a higher risk for Hyperkinetic Disorders (HKDs) and ADHD-like behaviors in children.”

This is not the first study to replicate the findings reported on by Dr. William Shaw two years ago. Dr. Shaw, in his recent newsletter, refers to a study reported on in the International Journal of Epidemiology between 1999 and 2008 on 48,631 children. They found that:

  • Exposure to acetaminophen for more than 28 days during fetal life increases the risk of adverse psychomotor and behavioral outcomes by almost 70%.
  • Exposure to acetaminophen doubles the risk of language problems in 3-year-old children.
  • In contrast they found no association between ibuprofen on the same neurodevelopmental outcomes, which suggests a specific effect of acetaminophen rather than a general effect of pain medicines.
  • Even short-term exposure (1-27 days) during pregnancy was associated with poor gross motor development.

Also in his recent newsletter, Dr. Shaw calls for a warning label be placed on all acetaminophen products intended for pregnant women and young children. His rationale for this is that acetaminophen has not just been linked to ADHD. It has been associated with:

  • increased rates of cancer
  • plausible causation of autism
  • plausible causation of brain damage (in vitro evidence associated with acetaminophen metabolites)
  • increased risks of testicular damage
  • asthma
  • allergy
  • language problems
  • adverse psychomotor and neurodevelopmental outcomes when used in pregnancy

To read more about the risks of acetaminophen, click here.


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ADHD DOES NOT EXIST OR IS IT NEUROCHEMICAL IMPULSIVE DISTRACTIVE DISORDER?

ADHD book cover

Today, February 18th, 2014, a new book is being released entitled “ADHD Does Not Exist” by Richard Saul, M.D.

Molly saw the author interviewed yesterday on “The Doctors” television show and it got us researching to understand more about what the author is really saying. We knew the title would offend lots of people and ignite a firestorm of controversy. But we wanted to take the time to understand… was the doctor really saying ADHD does not exist? Or is he trying to get our attention in order to make another point?

Dr. Saul says the medical establishment’s mistake is defining ADHD by its symptoms — failure to pay attention, too much fidgeting or running around, fast talking, repetitive behavior — rather than what causes it. Said another way, Dr. Saul believes that ADHD is a set of symptoms and not a disease. This belief led to the title of his book. He is not denying that real and devastating symptoms do exist for millions of children diagnosed with ADHD.

His main point is to ask doctors and families to first rule out several other diseases that can lead to the same symptoms as ADHD. In fact, Dr. Saul lists 20 possible “true” diagnoses in his book that mimic the symptoms of ADHD. For example:

  • sleep disorders
  • problems with hearing or vision
  • learning disabilities like dyslexia
  • substance abuse
  • Tourette’s syndrome
  • obsessive-compulsive disorder
  • major psychiatric disorders such as depression
  • hard-to-detect seizure disorders (20 second epileptic seizures)
  • simply being gifted

Dr. Saul explains that he routinely administers a series of tests before making any recommendations, beginning with a blood work-up to eliminate problems such as:

  • hyperthyroidism
  • iron deficiency
  • hormone imbalance
  • lead toxicity

If none of these physical causes are at issue, Saul looks for stress-related psychological problems.

It is important to note that none of these 20 other disorders that mimic the symptoms of ADHD benefit from amphetamine-based medications such as Ritalin. Possible side of Ritalin according to the FDA’s website include: slowing of growth (height and weight) in children, seizures, eyesight changes/blurred vision, painful and prolonged erections (priapism), headache, decreased appetite, stomach ache, nervousness, trouble sleeping, and nausea. The inactive ingredients of Ritalin are: D&C Yellow No.10 (5-mg and 20-mg tablets), FD&C Green No.3 (10-mg tablets), lactose, magnesium stearate, polyethylene glycol, starch (5-mg and 10-mg tablets), sucrose, talc, and tragacanth (20-mg tablets). We point this out because, often times, children with ADHD are sensitive to dyes and lactose.

If these other diseases/disorders/health problems are ruled out, Dr. Saul admits that the child’s symptoms may need to be treated with Ritalin. Rather than calling the child’s symptoms ADHD, he names it Neurochemical Impulsive Distractive Disorder.

Whether or not you agree with everything Dr. Saul has to say, we hope his point gets across… that we shouldn’t be in such a rush (or allow ourselves to be pressured) to give Ritalin to our children with ADHD. Let’s slow down and take the time to rule out other diagnoses, nutritional deficiencies, and health issues first. Let’s try to get to the root cause of the ADHD symptoms.

As moms, we recognize that parents may not have the time to wait before trying Ritalin for their children. We have heard stories of schools saying that a child cannot return to school without a prescription, and we cannot imagine the pressure that puts on a family. We are not here to judge and we know there are times when Ritalin (or other prescription medications) is the best option for all involved. However, we are simply saying that if you have the time and money for testing to rule out other causes of ADHD symptoms, it may be in your child’s best interest to look into it.

Side Note:

This struck such a chord with us because it is so similar to what we believe about a subset of children with autism spectrum disorder. We believe some children with autism have chronic health issues as the root cause of their autism. As you treat the health issues, their symptoms go away. We are not trying to say that this is true for all children with autism. We recognize that some children with autism don’t even have health issues and that their autism is likely genetic. But with the “spectrum” being as broad as it is, health issues are the root cause of the disease for some children with autism. Here is a link to an article we wrote called Health Induced Autism.


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A CAUTIONARY TALE… A STYROFOAM CUP CAN GET YOU GROPED BY A TSA AGENT!

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Stewart Airport, 5:00am, Sunday morning.  Still dark outside and not much movement at the airport. The morning rush for flights had not begun.

I entered the terminal and walked over to the rental car counter to turn in the keys. I dropped the keys in the box and turned around meeting the gaze of a TSA agent. I smiled and continued the process of checking in and getting my flight ticket from the JetBlue kiosk. I had the feeling I was being watched and I looked around and noticed the same TSA agent (known from here out as Skeletor) still watching me. He was making me feel uncomfortable. I took the last sip of my peppermint tea and dumped the styrofoam cup in the garbage can.

As soon as I walked up to the TSA line,  Skeletor asked to see the palms of my hands. No hello, how are you, or other form of greeting? He informed me he needed to scan my hands. What the heck? After all my years of traveling, this was a first. What could he possibly be checking for? The only thing that came to my mind were drugs.

Wrong! The lights of the machine turned red and I immediately got the “uh oh” feeling. Skeletor asked me to step aside and called for his supervisor. Long story short, my hands tested positive for explosive residue. Over the next 30 minutes, I was subjected to a humiliating and invasive pat down and my suitcase and purse were ransacked.

After being questioned, I was placed in a holding room where two female TSA agents rambled on about where they were going to touch me and how they would use the backs of their hands and fronts of their hands during the dreaded “cop a feel.” At this point it didn’t matter what part of the hand they were going to use. They were still rooting around in areas I would prefer them not to be. It was disgusting.

After they were done with me, I was dismissed with a wave of a hand and left to re-pack my suitcase and put myself  together. I was mad. No one else had been targeted nor had their hands been scanned. Why was I randomly selected? Why did Skeletor have his eyes on me from the second I walked in the door?

I support the fact we have to beef up security, but in this situation I felt there was more to it. How sensitive are Explosive Trace Detection (ETD) machines?

Explosive Trace Detection (ETD) Machine

Explosive Trace Detection (ETD) Machine

What can cause false positive readings? Did Skeletor know that a styrofoam cup could leave suspicious residue on a drinker’s hands? Is that why he was watching me? Hey, let’s target the tired housewife and make her cry. Five points for the TSA agent who can get her to wail or four points if you make her mad. Is it a sick game in which they tally up the points at the end of the week and the winner gets a free dinner at Bennigan’s?

This experience was scary. I was traveling alone and truthfully, did not know what my rights were in a situation like this. My suitcase, purse, driver’s license and ticket were confiscated from me. They were out of my eyesight and I was at the mercy of the TSA agents.

What would happen if something “magically appeared” in my suitcase or my money/credit cards went missing? It would become a game of he said, she said. And I have a feeling I would not have a leg to stand on.

What are a passenger’s rights in a situation like this? What would happen if a passenger missed their flight?

But this is what I have learned… all the following have the potential to cause false positives on the ETD scan:

  • Taking nitroglycerin-based heart medication
  • Living in & around agriculture
  • Being a legal gun owner
  • Using glycerin-based lotion
  • Being in the active military, guard, or reserves
  • Working in the explosives or mining industry
  • Working in the cosmetics industry
  • Touching styrofoam/polystyrene

Just to name a few.

The moral of this story… next time you go to the airport, be sure to wash your hands thoroughly… but NOT with glycerin-based soap! Happy travels.

 


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WE ARE… ADAM LANZA’S MOTHER

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When we heard about the tragedy in Connecticut, we like most people in America, were deeply shaken. But for us, the feelings of sadness were more than being parents and relating to the victims’ families. It was more than sadness over the loss of innocence of the survivors. We felt physically sick. We had an uneasy feeling.

When Leah heard that the school principal and school psychologist were shot, she immediately said that she thought it was the parent of a child with special needs who was fed up with “the system.”

We had a sixth sense that some how special needs was involved. When we heard the word autism connected to the shooter, it knocked the air right out of us. If you think about it, there but for the grace of God, any one of us could be Adam Lanza’s parent.

But, we do not want this incident to become the definition of autism. We do not want people to assume all people with autism are violent and someone to be feared. Our children are isolated enough as it is. Will children on the autism spectrum be even more discriminated against because of the actions of Adam Lanza?

When we saw this article, we were so impressed by Liza Long’s courage. She discusses the fears that many of us keep quiet and shove way down into the depths of our hearts.

As a society, we are failing children who have special needs. They are not being educated properly, they are bullied unmercifully, they are often abused by people in authority (the very people they are supposed to be able to trust), they are often times being improperly or over medicated, there are few jobs available for them after graduation, and the older they get people become afraid of them.

In addition, many times it is a single parent doing their best to raise a child with special needs. But even when two parents are involved, they often feel abandoned…left to fend for themselves. They turn to their family, friends, neighbors, and churches for help and nobody knows what to do. So the children continue to fall through the cracks.

We fear there will be more Adam Lanzas if something is not done.

But what should be done?

That is the million dollar question. We asked ourselves, if we had all the money in the world, what would we do to help? Many people are focusing on gun control, but we don’t think that is getting to the root of the problem. The root comes from the break down of the family unit and that we no longer have the “it takes a village to raise a child” mentality in America. Many children are not getting the love and guidance they need at home nor in schools.

We don’t have all the answers, but we know one thing we would do is revamp the school systems. Perhaps, if teachers were given proper training and support and if students were taught from an early age to include children who are different from them, we could make a positive impact.

So, fellow bloggers in the autism community, what do you think? If you had all the money in the world to devote toward this problem, what would you do? Do you think this will lead to increased discrimination against children on the autism spectrum?

Liza Long said in her article, “This problem is too big for me to handle on my own.” She’s right, she can’t handle this on her own. Nobody could. Currently there are no good options. We’ve said it before and we’ll say it again… the autism community is screaming out for help. We need to support each other (instead of tearing each other down for our varying views) and we need society to stop trying to sweep us under the rug.

1:88 is not going away.


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MOLLY AND LEAH’S FAVORITE EDUCATIONAL APPS

We shared last week that we have been heavily engrossed in starting a school program for Annie and Brody. In keeping with that theme, this week we’d like to tell you about our top 5 educational apps. In no particular order they are:

BrainPOP 
BrainPOP was conceived by Avraham Kadar, M.D., an immunologist and pediatrician, as a creative way to explain difficult concepts to his young patients. They have a BrainPOP Junior version for kindergarten to 3rd grade and another version for older children. It’s great because it covers every subject imaginable: science, social studies, english, math, arts and music, health, and technology. Currently, we are both are too cheap to pay the monthly subscription price so we just have the free version of the app. However, we plan to get the full access subscription for Annie and Brody as Christmas gifts. http://www.brainpop.com/

Language Builder
Great for children with auditory processing issues and receptive/expressive language delays. The children are presented with real life pictures and are asked to record their own sentence(s) based on the picture. There are 3 different levels of difficulty and the children can get a visual or verbal hint. Cheapskate Leah actually splurged and spent $9.99 on this app and she feels it has been well worth the money. Even more shocking, she might open her wallet again and spend $19.99 on Conversation Builder (see below).  Consider that a strong endorsement! https://itunes.apple.com/us/app/languagebuilder-for-ipad/id405801365?mt=8

Conversation Builder
Good for children who struggle to carry on back and forth conversations. The app shows images of children in social settings and the user is prompted to initiate a conversation (by recording his/her voice) to join in on what the children are doing in the picture. Hints are provided if needed.  If the user is successfully able to join the children, (s)he is then asked another question by the children in the app. In this way the user gets to practice peer interaction in an engaging and non-threatening way. Annie has used this app with her ABA therapist this school year and she loves it! She requests to talk to her “kid friends on the iPAD” every time we go to therapy. I (Molly) truly feel it has helped Annie get better at initiating and maintaining conversations.
https://itunes.apple.com/us/app/conversationbuilder/id413939366?mt=8

Toontastic
Empowers kids to draw, animate, and narrate their own cartoons and share them. But this isn’t just about children creating fun cartoons. It teaches them the fundamentals of story telling (setting, conflict, challenge, climax, and resolution). We both especially love this app because it’s… FREE!  http://itunes.apple.com/us/app/toontastic-play-create-learn!/id404693282?mt=8

SpellingCity
SpellingCity is a fun way to learn spelling and vocabulary words by playing engaging learning games using any word list (i.e., you can type in your child’s spelling list given to you by the school).  Annie’s favorite games are: Missing Letter, Word Scramble, and Hang Mouse. It is a pain-free way to get her to practice her spelling/vocabulary words. Another fabulously free app! Leah doesn’t have it yet and will be downloading the app as soon as we finish writing this post. http://itunes.apple.com/us/app/spellingcity/id538407602?mt=8

Now that we’ve shared some of our favorite apps, we need your help. Brody is a math “genius” (Molly is saying this, Leah disagrees with this statement and is very uncomfortable right now) but Annie really struggles with math. She says she can’t do it and she is “stupid” in math. Both Leah and I are desperately searching to find a good math app  that our children will do without us torturing them. The app doesn’t have to be free, we’d even cough up some money for this one. Has anyone come across such an app? All recommendations are welcome!

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