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.
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 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/
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
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.
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 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!
After taking the summer off, we’re trying to get back into our blogging groove. We had a very eventful summer that distracted us from our weekly ventings.
Our local ABA therapist was approached by a private school to start a program for children with special needs. She made the mistake of mentioning this opportunity to us and now we’ve roped her into something that has taken on a life of its own.
There are lots of programs in our community for children on the spectrum. But we realized what is lacking is a program that is uniquely tailored to each child. There are so many children falling through the cracks right now. Some are falling behind because they are in a self-contained classroom where the teacher has to teach to the lowest academic level in the room. Others are falling behind because they are in a regular classroom and the work moves at a pace where the children just can’t keep up.
Children are being moved along with major holes and skill deficits that are only going to hold them back more and more as time goes on.
Our other frustration was that our children are above grade level in some areas and yet behind in others. We want them to keep moving forward in their strength areas while having a chance to catch up in the areas where they struggle. However, teachers who have 20+ students are simply not able to accommodate this need.
Our third major frustration was that the school systems don’t seem to believe in our children’s potential the way we do. We have not written off our children. We want them to have the same learning and career opportunities as everyone else.
What were we to do? Start our own school! So that’s what we did this summer. It’s a pilot program, and we hope and pray it will be successful.
Here are the ideals of our program, straight from our brochure:
We recognize that every child is unique and that an academic program must be tailored for each individual child. We help students achieve their full potential by offering a smaller, hands-on, interactive, non-traditional learning environment.
There are no reduced expectations for our students. We teach the same material as traditional schools, but we teach it in a way that matches our students’ individual learning styles so that they are met with academic success instead of frustration and feelings of failure.
Our program equips students with the confidence and study/organizational skills to successfully transition to a traditional school, if desired.
Our pilot program is for elementary age students. However, we hope to start middle and high school programs soon.
So we’d like to know… have any of you out there taken on this same challenge? We’d like to learn from you. What were the biggest challenges? What were your lessons learned? What do you wish you would have known before starting this adventure? Any advice you can offer us would be greatly appreciated.
We are learning as we go along. Truth be told, we’re winging it. Sometimes we fear we’re in over our heads. We just have to have faith that our love for our children and our sheer tenacity will see us through. Thanks in advance for your help!
We are combining ideas from two articles we came across about mandatory participation in vaccine trials.
This idea burst on to the scene back in January of 2012 when Oxford University’s Susanne Sheehy and Joel Meyer wrote an article entitled Should Participation in Vaccine Clinical Trials be Mandated? The article was published in the American Medical Association’s Virtual Mentor journal.
This week, we read an article/interview between Natural News and Dr. Blaylock outlining reasons against requiring mandatory participation in vaccine trials.
Below, we give a high level summary of what the articles said in favor of compulsory vaccination. Then, we summarize the arguments against compulsory vaccination.
As always, the links to the full articles are included at the end of our summary.
- To date vaccination has saved many lives and has the potential to save millions more, especially if vaccines are developed against the “big three”: malaria, HIV, and TB.
- The lack of animal models that can reliably predict vaccine efficacy means that development still unavoidably relies on testing of novel vaccines in healthy individuals.
- In recent decades there has been a significant decline in the numbers of healthy volunteers who participate in clinical trials, a decline that has the potential to become a key rate-limiting factor in vaccine development.
- “Someday there’s going to be a big pandemic and if the vaccine industry doesn’t have this machinery and this investment in its infrastructure it won’t be able to churn out the cure that saves us all from total death and destruction.”
- For every one person that is killed from a vaccine trial, maybe a million people will be saved, thus it’s for the greater good of society.
Dr. Blaylock’s Response Against Compulsory Vaccination:
- It’s a violation of the Nuremberg medical code that is supposed to protect the public against being experimental animals for governments or vaccine companies.
- It’s against the founding principles of our country. It is not consistent with the values of a free republic, rather it is socialist in nature.
- A lot of the damage done by vaccines is hidden from the general public because: the mainstream media doesn’t cover it and it’s extremely difficult for a parent to appear before the vaccine injury court, let alone to get a settlement.
- Blaylock says that often (like with Gardasil) the serious complications of vaccines exceed the death rate from the disease we’re vaccinating against. If we, the public, had accurate data on vaccines injury/death, we would see that we are “…harming more people than benefit from the vaccine.”
- Blaylock argues that we (the USA) do have the capability to respond to a mass pandemic, however, the vaccine makers likely would not make the huge profits they are used to unless the vaccines were mandatory.
- Sticking vaccines into the muscle of our children’s arms and legs actually suppresses the immune system. It causes the immune system to switch to TH2 type cytokine production, which inhibits immunity and leaves you with little protection against viruses and bacteria.
- Dr. Blaylock says if you look on the CDC site they’ll tell you, “…if a child gets a HIB vaccine, for the next two weeks, they’re much more likely to get HIB and to die from it than they would if you didn’t give them the vaccine.”
- Blaylock says that we, the public, have been led to believe that vaccines have controlled epidemics, but in actuality, “The vaccine came out at the very end of the fall in these infections. The reason is, when you get natural infections, over time the population develops massive immunity to the infection.”
- Blaylock mentions a “secret conference” called the Simpsonwood Conference held in Georgia where big wigs from the vaccine industry met to discuss whether giving mercury containing vaccines caused neuro-developmental problems. They concluded that mercury containing vaccines did cause a problem. When the chairman of the committee heard the data, he said he no longer wanted his grandchild to be vaccinated. Blaylock feels this is a common occurrence… that the very people pushing vaccines do not allow themselves, or their loved ones, to be vaccinated because they have knowledge we (the general public) are not privy to.
Blaylock’s Public Challenge to Anyone Pushing Mandatory Vaccination:
- We (the public) should be able to see the vaccine records of anyone pushing mandatory vaccination (to see if they actually have been vaccinated).
- If they have not been vaccinated, they should be publicly vaccinated with “off the shelf” vaccines like our children are (not a specially formulated version of the vaccine that has the toxic ingredients removed).
- He wants the heads of the vaccine making companies, and their Boards of Directors to be vaccinated with every vaccine they manufacture.
- He believes that if all vaccine pushers had to respond to this challenge, we would hear a lot less about mandatory vaccinations.
Sources and More Information:
In Lisa Collier’s article, “What’s Causing the Autism Epidemic?”, she discusses what are and what are not potential causes of autism. For instance, she says that the “refrigerator mom” theory has been proven incorrect. Then, she goes on to say, “Another thoroughly discredited belief was that thimerosal, a mercury-based preservative used in childhood vaccines, such as the MMR (measles, mumps and rubella) shot, was the culprit.”
Let us be clear. We DO NOT believe that vaccines are the sole cause of autism. Nor do we believe that thimerosal (mercury) is the only ingredient in vaccines that can cause a health reaction like autism.
We do, however, believe that vaccines can be one of the many environmental triggers of autism. In addition, we cannot logically comprehend how it could be safe to inject thimerosal into our children’s bodies (through vaccines). We question why thimerosal in vaccines has been ruled out as a potential autism trigger. We wonder why there is such a campaign to make the public think mercury containing vaccines are completely safe when our own government agency, the CDC, puts out the following guidance on how to properly clean up a mercury spill from a light bulb or thermometer:
CDC Instructions on How to Clean up a Small Mercury Spill
(a broken thermometer, thermostat or compact fluorescent bulb)
Step 1. Isolate the spill and ventilate the area right away.
- The person who will clean up the spill should have everyone else, especially children, leave the spill area, including pets. Don’t let anyone walk through the mercury on their way out. L&M Comment: Don’t let your children, or even your dog, walk through the mercury…but please, inject it into your child’s body
- Open all windows and doors that open to the outside of the house.
- Close all doors between the room where the mercury was spilled and the rest of the house.
- Close all cold air returns so that mercury vapor is not carried throughout the house.
- Turn down heaters and turn up single-room air conditioners, but don’t use central air conditioning.
- Use fans to blow mercury-contaminated air outside. Turn off fans that do not blow air to the outside.
Step 2: Get the items needed to clean up a small mercury spill.
You will need the following items:
1. 4 or 5 zipper-top plastic bags
2. trash bags (2 to 6 mm thick)
3. rubber, nitrile or latex gloves
4. paper towels
5. cardboard or squeegee
6. eye dropper
7. duct tape, or shaving cream and small paint brush
9. powdered sulfur (optional)
Step 3: Cleanup Instructions
- Put on rubber, nitrile or latex gloves.
- Pick up any broken pieces of glass and place them on a paper towel. Fold the paper towel, place it in a zipper-top bag, and seal the bag.
- Clean up the beads of mercury. Use a squeegee or cardboard to slowly roll the beads onto a sheet of paper. An eye dropper can also be used to collect the beads. Slowly squeeze mercury from the eye dropper onto a damp paper towel. Put the paper towel, paper, eye dropper, or anything else that has mercury on it, into a zipper-top bag, and seal the bag.
- After you remove larger beads, put shaving cream on top of a small paint brush and gently blot the affected area to pick up smaller hard-to-see beads. You can also use duct tape or masking tape to collect smaller hard-to-see beads. Place the paint brush or tape into a zipper-top bag.
- It is OPTIONAL to use commercially available powdered sulfur to absorb beads that are too small to see. The sulfur does two things: (1) it makes the mercury easier to see since there may be a color change from yellow to brown, and (2) it binds the mercury so that it can be easily removed, and it helps to keep mercury that may have been missed during the cleanup from vaporizing into the room. Mercury spill kits that contain sulfur can be purchased from laboratory, chemical and hazardous materials response supply manufacturers. Read and understand how to use the cleanup kit before using. Note: Powdered sulfur may stain fabrics. Also, when using powdered sulfur, avoid breathing in the powder as it can be moderately toxic.
Step 4: Look for mercury that may have been missed during the cleanup.
- Take a flashlight, hold it at a low angle close to the floor in a darkened room, and look for additional glistening beads of mercury that may be sticking to the surface or in small cracks. Note: Mercury can move surprising distances on hard and flat surfaces, so be sure to carefully inspect the entire room when you are searching.
Step 5: Remove contaminated carpet and throw away.
- Place outside the house in a safe place until household trash is picked up.
Step 6: Remove mercury from shoes, clothing, and skin.
- If mercury had touched your skin, shoes or clothing, remain still and have someone bring you a plastic trash bag and wet paper towels. Wipe off any visible beads of mercury with the wet paper towels and then put them into the trash bag. Remove contaminated shoes and clothing and place them in a trash bag. Seal that bag and place it in another bag. L&M Comment – Our children are contaminated with mercury from their vaccines… does this mean that we need to throw them into a trash bag?
Step 7: Properly dispose of contaminated cleanup materials.
- Place all materials used in the cleanup, including gloves, in a trash bag. Place the zipper-top bags that contain mercury and other objects into the trash bag. Close and seal the trash bag and place it in a safe place outside your house. Label the bag as directed by your local health or fire department. Contact your local health department, municipal waste authority, or your local fire department for proper disposal in accordance with local, state and federal laws.
Step 8: Following the spill
- Keep the area well ventilated to the outside (i.e., windows open and fans in exterior windows running) for at least 24 hours after cleaning up the spill. Continue to keep pets and children out of the cleanup area. If anyone gets sick, call your doctor or the Poison Control Center at (888) 222-1222 immediately.
- You may want to hire a contractor who has monitoring equipment to screen for mercury vapors. Consult your local environmental or health agency to inquire about contractors in your area.
- If young children or pregnant women are in the house, seek additional advice from your local or state health or environmental agency.
Something to think about…
For More Information:
- http://health.yahoo.net/experts/dayinhealth/whats-causing-autism-epidemic Lisa Collier’s article, “What’s Causing the Autism Epidemic?” (April 17, 2012)
Sometimes we get so self-absorbed on our quests to recover Annie and Brody, we forget to appreciate how hard they are fighting alongside us.
We forget that things are twice as hard for them, take them twice as long, and ten times the effort.
We forget that they manage to smile and enjoy being kids even if they feel sick or have pain.
We forget that the littlest things can cause them anxiety, but yet they manage to try new experiences every day.
We forget that they rarely complain about the weird food and all the supplements.
We forget that they don’t get upset about our constant coaching and correction of their speech, language, and social skills.
We forget that they are not upset by our constant hovering even though they are getting older and may want privacy and independence from us.
We forget that our kids don’t gripe about hardly ever getting “down time” or time to just “be.”
But… we will not forget to recognize our children for the fighters they are. They are “tough as nails” and we’d be nowhere without them.
Thank you Annie and Brody, our precious gifts from heaven, for teaching us real love and making us better people.
Huffington Post Parents is looking at autism through the eyes of parents this week. Each day, they are running an essay about the stages of parenting a child with autism: the moment of diagnosis, the school years, teens, and entry into the adult world. We were excited to read this because, we too, recently kicked off a series about Autism Parenting in honor of Autism Awareness Month. We wanted to see what angle the Huffington Post was taking and the views of the writers they selected. We were optimistic that they would represent all the varying opinions of the autism community.
The first post was written by Hannah Brown and it was entitled, “Ten Things To Do After An Autism Diagnosis.” To be honest, we were somewhat surprised and disappointed after reading this initial post. We feel this was an odd choice by The Huffington Post. The author’s post was well written and has its place somewhere, but we don’t feel it was a good choice for introducing their entire series about autism parenting. Let us tell you why.
One, we feel The Huffington Post should have taken the time to introduce “the different faces of autism.” How can one post represent the autism community’s reaction to receiving the initial autism diagnosis? A parent’s reaction is going to be vastly different depending on the type of autism their child has… Classic Autism, PDD-NOS, Rett’s Syndrome, Asperger’s, and Childhood Disintegrative Disorder. We feel The Huffington Post should have taken the time to have a parent who represents each of these 5 types of autism talk about their individual reactions to hearing an autism diagnosis. Instead, The Huffington Post chose a top 10 list to represent us. It felt flippant, like they picked the post out of a hat and thought “this is good enough.” The Huffington Post’s selection felt like a “rush job” for such a defining moment.
Two, the post seemed to be written in a “tongue in cheek” style which doesn’t seem appropriate for the life-changing, ground shaking moment a parent receives an autism diagnosis. We feel The Huffington Post should have selected a post that discusses the raw emotions a parent feels when they hear the word “autism” in connection to their child. This post seemed to jump ahead to a “to do” list instead of respecting the emotions brought forth by receiving an autism diagnosis.
Is it okay for us parents to have a moment to be sad as all our dreams are being redefined? Is it okay for us to be scared of the future for our children? Can we have a moment to digest and make sense of what we’ve just been handed? Are we expected to jump immediately into action mode? We don’t feel that most parents went right into checking off a to-do list upon receiving a diagnosis. That comes later. We know the author was just trying to share her “lessons learned,” which is good information, but just not what you want to hear when you first hear the word “autism.”
This post, once again, neglects to discuss and educate the outside world on how a parent feels when they receive the diagnosis. And as we’ve pointed out, when the public doesn’t “feel our pain” they do not feel compelled to help… to fund autism research, to help and support family or friends who have a child with autism, to keep their judgments and criticisms of autism parents to themselves. This was a huge missed opportunity by The Huffington Post to help us – the autism community.
The third reason we were surprised and disappointed by this post was because it did not discuss any sort of action plan to help the child. It failed to address how to handle potential health issues, how to find the right types of therapy, or where to get reputable information/advice. It was all about what we, as parents, can do for ourselves. We do feel it’s important to look out for and take care of ourselves (and the author offers some good tips), but we don’t feel that’s representative of most parent’s first reaction to a diagnosis. That comes later.
Because of these three reasons, we believe the author was met with very harsh criticisms of her post. Our hearts ached for her as we read the critiques. She’s another autism mom, just like us, who has dealt with the challenges of autism for many years. Putting ourselves in her place, we would have been extremely hurt by many of the comments. She’s had 12 years to reflect on what she wishes she would have done upon receiving the diagnosis and she was just trying to share it and perhaps, add a little humor to a difficult situation. We wish she wouldn’t have had to bear the brunt of such bitterness. The Huffington Post should have received the criticism for selecting the wrong post at the wrong time. Not her. Her post would have been quite appropriate later in their series.
To read the post and criticism for yourself, go to http://www.huffingtonpost.com/hannah-brown/autism-diagnosis_b_1390100.html?icid=maing-grid7%7Cmain5%7Cdl11%7Csec3_lnk1%26pLid%3D148528.
We turned on the Today Show at 7:00am sharp expecting to hear… “Good morning. Today’s top story – new numbers just in. One in eighty-eight children are being diagnosed with autism spectrum disorder. What’s behind this frightening epidemic affecting our children?”
But was there a peep about the new CDC autism statistics? Nope. Not a word during the morning teaser about the day’s top stories. Not a word during the first 15 minutes of the show where they covered really important (insert sarcasm here) stories like your odds of winning the upcoming $540M lottery jackpot.
Finally, about 20 minutes into the show, they mentioned the new autism statistics. They had a representative from Autism Speaks and Dr. Nancy Snyderman on to discuss them. The segment lasted only a few minutes. Dr. Nancy went over the obligatory “party line”… the rise in autism is due, in part, to better reporting and broadening the diagnosis (i.e., more disorders are being called autism because of the birth of the “autism spectrum”). We are so sick of hearing about that. Wake up – that’s not what’s going on here. There is a real increase in autism. Even though it’s scary, people need to stop looking the other way or next thing they know, autism will impact them.
Dr. Nancy was surprisingly honest and admitted that we have no idea what causes autism. She said (we’re paraphrasing) “There seems to be environmental triggers for autism and perhaps future research needs to focus on figuring out what those triggers are.” Ya think?
At last, some acknowledgement in the mainstream media that, while there are likely genetic predispositions at play for our children, there is definitely something (or more likely, lots of things) in our environment causing our children to develop autism. Please, God, somebody help us figure out what they are! We parents are out here drowning trying to solve this mystery all by ourselves. Our children are the early warnings for society that something has gone terribly wrong. If we continue to ignore them, we shudder to think what will happen.
The representative from Autism Speaks was quick to clarify that only a very small part of the increase in autism is due to broadening the diagnosis (THANK YOU!). She then said, “There is an autism epidemic and we need to form a national plan to address this health crisis.”
Yes! Yes! Yes! If one in eighty-eight children were getting the chicken pox (something that likely won’t kill them and doesn’t cause lifelong disability) we are almost certain there would be a national plan to address the epidemic! Every time we would turn on the tv, we’d be hearing about the epidemic and how we can all work together to eradicate it. WHY ISN’T THIS HAPPENING FOR AUTISM? Think about when there’s been a flu outbreak or even a possible flu outbreak. It gets so much more media coverage than autism. Everyone talks about it. Why not autism? We just don’t get it.
Geraldine Dawson (from Autism Speaks) then made three critical points about what the national plan for autism needs to include:
- More research on the causes of autism and how to treat it
- Better diagnosis earlier (so that there is more early intervention)
- What to do with the rising number of adults with autism; how can we make them productive members of society?
While this was a good segment on the increase of autism, we don’t understand why it’s not the top news story of the day. Will these new statistics get autism the attention it deserves? Sadly, we doubt it.
What do the numbers have to be for people to care? One in ten? Does that warrant attention? Does the President or some Hollywood icon’s child need to have autism? Would that do it? Do we need a fancy, “Kony 2012″ style documentary film about autism to go viral? Would that make people care?
Please world – why won’t you help us?
If you want to watch the Today Show clip for yourself, go to http://www.bing.com/videos/watch/video/alarming-rise-in-autism-cases-reported/65yaznc