Changes are happening in my house. Roles are shifting and I am unsure of my place or the direction the changes will take me.
Life continues to bustle around me, but I want it to stop…just for a brief moment.
I have grown too comfortable in the individual roles each family member has taken and I am not ready for a shake up in the family dynamics.
I need a little extra time to take a breath, make peace with the fact my children are growing up, exerting their individuality and my role of mom is being transformed.
I feel like a kite in the wind that has been pulled from the security of an owners hand. I am now flying uncontrolled through the air, destination unknown. I fear the unknown and I am just not ready to face the winds of change.
My oldest son is about to leave the nest and start a new life as a college freshman. My middle son is close behind, embracing his sports and high school life. I am frightened that my children will no longer be under my roof, and somewhat under my control.
I am now closer to 50 than 40. The reflection I see in the mirror does not always please me…wrinkles, sagging skin and grey hairs.
And then there is Brody. Brody, my naughty little caterpillar emerging from his cocoon… knocking on the door of puberty.
So what exactly is my issue? What is at the root of my angst?
Is it the loss of control?
Is it that my children are happily cutting their umbilical cords, becoming independent?
Is it the loss of my youth?
To be honest I think it boils down to … autism and puberty. It scares me.
What is in store for me, for Brody?
Puberty with the first two boys came and went. Not much fan fare or hoopla. There were no worries of privacy or inappropriateness. Girl crushes, the first broken heart, peer pressure were just part of the process. We rolled with the punches.
Will “the process” be the same for Brody? Will he have the same experiences? Or will he be unfairly judged, ridiculed, and made fun of as he attempts to find his way through the ugly jungle of adolescence?
We all know what a difficult time it can be muddling through the new rules adolescence brings…especially if you are so-called “different.”
I can’t keep him confined in my tight grasp forever. But can I let go?
It is time to embrace the winds of change. Face my fears.
I can not change change or control what is happening. I am only capable of doing what I can.
I give myself permission to allow the wind to take me to new places…unknown. To dance among the clouds.
I am a kite in the wind.
One of the questions we get asked quite frequently is about how to control yeast, so we thought we would write a post to give you our latest thoughts on the topic.
Yeast, in our opinion, is one of the hardest health problems associated with autism to beat. We can’t say that our children are 100% yeast free. However, with a recent discovery of a new product we feel like we’ve made some significant progress on killing off our children’s yeast. Prior to using this product we felt like we did nothing more than manage their yeast… we just kept it status quo (i.e., it didn’t get worse but it didn’t get any better either).
We know a lot of the DAN! doctors prescribe Diflucan or Nystatin. Leah tried Diflucan for a couple of months when Brody was first diagnosed with autism and she really didn’t see any gains. She stopped giving it to him after a few months because she wasn’t comfortable with the potential side effects and long-term implications.
Molly never went this route because she read that once you take children off the antifungal drugs, the yeast comes back with a vengeance (i.e., it mutates and comes back even stronger and more resistant to treatment) and then it is almost impossible to eradicate. Also, she read that it is not healthy to leave your children on these antifungals for long periods of time. Doing so can weaken children’s livers and other organs.
Molly tried many of the natural antifungals on the list but to be honest, they did nothing more than keep Annie’s yeast in check (i.e., they didn’t kill off any of her yeast, but her yeast didn’t get worse either).
We lived with years of frustration, fighting a losing battle against yeast. We figured our children would have to suffer through the side effects of chronic yeast for the rest of their lives. But then, Molly discovered a new product that worked wonders for Annie. But Leah needed convincing before she was willing to open her wallet. She wanted Annie to be the “guinea pig.”
Molly has now been using this product for Annie for over a year and Leah has used it with Brody for a few months. The product is called Yeast Management.
When Molly started using it for Annie, she saw an incredible burst in language and social skills. In addition, she saw a big improvement in her bowel issues. When Leah started the product with Brody, she too saw a burst in language and noticed that his tongue was no longer white (i.e., covered with yeast).
Our kids did not experience die off from using the product. But we believe this is because they had eaten a “clean diet” for over four years before introducing the Yeast Management.
If you start it, we strongly recommend going really slow to minimize die off. Start with a ¼ teaspoon, once a day, mixed with a bit of water (Molly squirts it in Annie’s mouth with a syringe and Brody just drinks it for himself).
If you are seeing good things, then continue to increase the dose by a 1/4 teaspoon every week and work your way up to 1 tablespoon. We are not doctors. We are just telling you about what we did. Please don’t take this as medical advice.
By the way, if you order the Yeast Management, you will see on the label that it contains sugar and vinegar. Don’t be concerned. First of all, it has a very small amount of sugar/vinegar. Second, the sugar/vinegar is what baits the yeast. The yeast eat the product and then “blow up” (excuse the “mom lingo”) from the inside out. That’s why the product works so well.
Product info: Yeast Management 1.800.405.2827 or email Trsproducts@embarqmail.com. The company doesn’t have a website because they sell wholesale to doctors and their doctors don’t want them to have a presence on the web. They don’t usually sell direct to the consumer but because they are sympathetic to the autism cause, they will sell direct to anyone who mentions they have a child with autism (at a discounted price). With discount, the price is $39.95 a jar and $8.95 shipping (in the U.S.).
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!
- The Environmental Working Group (EWG) has released its 2012 Sunscreen Guide, listing the safest and most toxic sunscreens on the market.
- About 75 percent of sunscreens contain potentially harmful ingredients, such as oxybenzone and retinyl palmitate.
- Several studies have confirmed that appropriate sun exposure actually helps prevent skin cancer. In fact, melanoma occurrence has been found to decrease with greater sun exposure, and can be increased by sunscreens.
- The key to safe sun exposure is to determine the time of year when UVB rays will reach the ground in your specific area. When UVB rays are absent, your body will not produce vitamin D in response to sun exposure.
Safe Sunscreen Criteria
To make it onto EWG’s safe list, sunscreens must:
- Be free of oxybenzone - believed to cause hormone disruptions and the type of cell damage that can provoke cancer
- Be free of retinyl palmitate (a type of vitamin A) - ”high concern” due to its developmental and reproductive toxicity
- Provide a maximum of SPF 50 – SPFs higher than 50 do not offer a great deal more protection at higher levels, therefore, you are wasting your money by buying SPFs higher than 50
- Protect against both UVA and UVB sunrays - SPF only protects against UVB rays, which are the rays within the ultraviolet spectrum that allows your body to produce vitamin D in your skin. But the most dangerous rays, in terms of causing skin damage and cancer are the UVA rays. This is why you always want to make sure any sunscreen you buy protects against UVA’s as well as UVB’s.
Internal Sunscreen a Safer Alternative?
- Using an “internal sunscreen” is an alternative to slathering on sunscreen.
- Astaxanthin, a potent antioxidant, has been found to offer effective protection against sun damage when taken as a daily supplement.
- Some sunscreens are also starting to use astaxanthin as an ingredient to protect skin from damage. You can look for a sunscreen that has astaxanthin in it. Just make sure the product in question does not contain other toxic ingredients, as topically applied astaxanthin will not likely cancel out the deleterious effects of an otherwise toxic lotion.
Other Tips to Decrease Risk of Burning
- Consuming a healthful diet full of natural antioxidants is another useful strategy to help counter skin damage from exposure to ultraviolet radiation.
- Fresh, raw, unprocessed foods deliver the nutrients that your body needs to maintain a healthy balance of omega-6 and omega-3 oils in your skin, which is your first line of defense against sunburn.
For More Information
http://breakingnews.ewg.org/2012sunscreen/hall-of-shame-whats-wrong-with-the-sunscreen-protection-business/ - A list of brand name children’s sunscreens that “failed the test” according to the EWG and made it on their “Hall of Shame.”
HEALING BRODY – PART 6
A few weeks after my first DAN! conference I found myself sitting in the office of a prominent DAN! doctor. Brody was quietly playing at the train table, oblivious to his surroundings and how his life was about to change. I was as nervous, as I was excited. I was about to embark on a journey of discovery. What was Dr. “R” going to uncover about my son? What secrets lay behind Brody’s dark circled eyes?
The appointment was a whirlwind of information – too much to process in a short amount of time. Tom and I discussed Brody’s health history and concerns with Dr. “R”. Brody was poked and prodded. We were instructed to collect Brody’s urine for 24 hours, complete some recommended reading and continue with the Gluten/Casein Free Diet.
The healing process had begun. In the meantime, we would have to wait patiently for Brody’s results to come in.
Everyday I would check the mailbox for the long-awaited “Holy Grail” of info – the stepping-stones I needed to finally put a plan of attack in motion. Without this treasure trove of information, I was a ship adrift at sea.
The day finally came. The package arrived. It felt like Christmas in March.
Tests (AKA Getting a Baseline)
- Organic Acid Test (OAT)
- Autism Panel – Porphyrins Profile (toxicity biological marker), Pterins Profile (Neopterin & Biopterin-Immuno-Inflammation), 80 HdG and 80HG (DNA & RNA Damage), F2-a-Isoprostane (membrane oxidative damage)
- Red Blood Cell Elements
- Plasma Sulfate
- Plasma Cysteine
- Comprehensive Food Allergy Test
- Stool Test
- Ann Connolly Study
- Titre Levels
- GF/CF Peptide Test
- Positive for high levels of heavy metals in his system
- Unspecified disorder of immune mechanism (body develops an inappropriate response to a substance)
- Encephalopathy unspecified (disease, damage, or malfunction of the brain – majority of cases arise from infection, liver damage, anoxia, or kidney failure.)
- Allergic gastroenteritis and colitis
- Nutritional deficiency
- Yeast, yeast and more yeast
- Brody was a sick little boy. Sadly, he was unable to tell me how lousy he felt because he didn’t know what feeling good was. His entire life, mainstream medicine had ignored his body’s pleas for help and never once, did they consider how Brody’s underlying health issues may have caused his ‘autistic’ symptoms.
The Initial Plan of Action
- Heal Brody’s gut.
- Continue GF/CF and eliminate foods Brody tested allergic/sensitive to. (hard-core 100%, no cheating)
- Add probiotics,vitamins and minerals (Acetyl-L-Carnitine, Pro-Bio Inulin Free, Super Nu Thera, CoQ10, fish oil, and calcium powder)
- Diflucan (anti-fungal)
- Spironolactone (anti-inflammatory)
- Glutathione cream
- Chelation (DMSA suppository twice a week to remove heavy metals)
Brody had just turned 5, and according to the internet, he was past the point of recovery. I had missed the so called…”window of opportunity.” This idea could not be further from the truth. Healing can take place at any age. Do not become discouraged. Within a month or two of starting biomedical, we were beginning to see small, but positive changes in Brody. His very limited vocabulary was expanding, his diarrhea was no longer an everyday occurrence and he engaged us more. Our little boy, who had been written off by so many, was emerging from his cocoon. Tom and I were beyond pleased.