H is for HBOT

What is HBOT you ask? Glad you asked! It stands for Hyperbaric Oxygen Therapy. It's something new in the autism community that parents are trying for their children. I am considering this for Ivy. We could buy our own chamber for about $15,000. I am not sure where I could come up with that kind of money, but where there is a will, there is a way, right?

I am going to include this YouTube video showing what HBOT is and how it works for kids with autism. Very interesting indeed.

G is for "GEE" and GIFTED

Like my own daughter, you will find that many kids on the spectrum are GIFTED and many fall under another classification called hyperlexia (a precocious ability to recognize written words significantly above an individual's language or cognitive skill level).



BEFORE Ivy was diagnosed with autism, I actually thought at one point she might be a baby genius. Don't laugh....I really did! Here she was just about 15 mths old she couldn't even ask for a drink, but she could read. Weirdly enough, my sister-in-law had given her this old Fisher-Price Electronic Alphabet Board and she LOVED that toy...it was her favorite. She taught herself to push the I and the V buttonson the board...like it was saying her name. She would push the buttons over and over and it was talking to her, I-V, I-V, I-V, I-V.....I thought to myself...what a little smartie she was...then a week later, I was passing through the living room, when I hear the board saying the letters J-D, J-D, J-D, J-D (we call Jade, Jadie for a nickname sometimes). Man, isn't that cute and she is awfully smart!!



Well, that you may think is not so special...even at 15mths....then listen to this. We had a box of alphabet fridge magnets in the garage left over from when Jade was a toddler and thought well, she since seems to like letters, numbers and shapes so much...maybe she would like to arrange them on the fridge like Jade did at this age. So, I send Ed out to hunt them down. Five minutes later, he comes in with the box and says, "Ivy come see what Daddy has for you". Ivy doesn't seem too interested, until he pulls the first letter out which happend to be a "G". Ivy said in her toddler talk, "sa Gee". I thought to myself...did she just say G...and if so then lucky guess little girl. :)



Then Ed pulled out the next letter which was an "S". Ivy said, "sa, Essss". And then Ed & I looked at each other and said, "whoa...how does she know these letters"....and then quickly followed by a "nah...that was just a freak thing". So Ed pulls out a third letter and this time he puls out an "X". Ivy gets excited and says, "es EXXXXXXX". Then I just about choked on my own breath. I said, "Pull another one out, pull another one out!!!" So, Ed continues to pull random letters from the box.....and to add to storyline here....there were actually two sets of magnets in the box...both upper and lower case letters and I want you to know that she guessed every single one of them right except one. When Ed pulled the lower case L out, she said it was a number ONE......not bad and very close IMHO. We had NO CLUE how she learned the letters at such an early age. We had never worked with her on the alphabet either. She had that electronic alphabet board and that was it. SHE MUST HAVE TAUGHT HERSELF!!



So, it started there with the box of refrigerator magnets. A few months after that, while driving down the road, she rattles off....T-A-C-O-B-E-L-L....TACOBELL!! And then stuff like, S-T-O-P....STOP!!! J-A-D-E...JADIE!!! I-V-Y....IVEEEEE!!!! She was so amazing, I really thought she was gifted for her age. I mean her favorite books were What to Expect When Expecting and What to Expect The First Year. She loved those books and would spend hours looking at them intently and turning each page to soak it all in. It didn't surprise me when she starting reading little words in books by age two at all. Dr. Suess was her favorite and she was reading by herself by age three.

After letters came numbers, shapes and colors. She loves them all and her world revolves around numbers, sizes, shapes, calculations etc. Ivy has something called sight counting. She can look at something and know how many there are without even counting. An example of that was when she was four, we went on a field trip with her pre-school class to the Indy Zoo. We walked into the Penguin House and she got all excited and yelled out, "Look!!! It's thirty-seven penguins!!!"

Her teacher and I just looked at eachother and laughed, then I stood there looking at the penguins and started counting the little ones standing on the ledge...and yes, you guessed it...there were thirty seven of those little penguins lined up in a row! Amazing, isn't it? Well, the following July4th, we went to watch the firework show at the local high school football field when she watched she would yell out things like, "oh, it's 200 stars"....."ooooh! It 437 stars"...and this went on through the entire show yelling out numbers every time one went off. We laughed and I can't count that fast, so I will take her word for it that she counted correctly.

Ivy also loves to keep track of people's birthdays ands how old you are. She never meets a person without wanting to know when your birthday is and she will then file it away and tell you if she knows anyone else that has a birthday the same day and who else has one in the same month. She really is amazing when it comes to this. I can't tell you how many birthdays this child has memorized.

She loves the weather and knowing how many degrees it is and if it's sunny, cloudy, windy, rainy, etc. She wants to watch the Weather Channel in the mornings, not cartons. She HAS to know what the temperature is outside now and what it will be today and tomorrow, etc.

I guess as I reflect back now as I type, she really is GIFTED. She is a gift. She is my gift from God and who am I to question that?

F is for FRIENDS, FAMILY & FAITH

When you have a child that has autism, you will need all three of those things in order to survive in life. I love how Jenny McCarthy described in her book, Louder Than Words when someone's child is diagnosed with cancer, they rally around you and grieve with you and cook for you and hold your hand...but when your child is diagnosed with autism...people stop calling you for play dates, dinner and shopping and they avoid you out in public, lose your phone number and they say things like, "she just looks so normal". Yeah, you're right, she DOES look normal, but you aren't with her 24/7 like we are. You aren't there to see the midnight meltdowns and what happens when you feed her food she isn't supposed to have while she is with you (the after effects which are never while she is with you....it's always hours later when it kicks in and usually lasts for DAYS after).

You aren't there when she is on sensory overload kicking and screaming because she wants to wear a dress and there are none clean and nothing else will do and she has verbal barf and looks like Linda Blair from the Exorcist spewing split pea soup. You aren't there to see her cry when she can't make any friends and no one wants to play with her because she is different. You aren't there to see those little things about autism that no one else except her mom, dad and sister know about. That's the part people do not understand. She seems so normal on the outside, doesn't she? That is the part that makes it so difficult for friends and family to understand.

When it comes to friends and family(aka F&F), you have to have a support network of some kind or you will get sucked into the black hole of autism. Autism rules your life and it dictates how every little thing will happen in your daily life. I don't care how good of a dispostition you have, when autism rears it's ugly, ugly head....you better run for the hills or else it will sweep everyone away in it's wake. After a time living like this, it's starts to chip away at your soul...your spirit...your sense of self. You start to lose faith that things are ever going to get better.

Like I said, what families with ASD kids really need in their lives is a great support network. They need people to take one or more of their children overnight so the parents get some together time (soooooo many ASD families end up divorced due to the stress). They need to offer to cook dinner once in awhile for the exhausted moms. They need someone to offer to help them clean and organize their homes (most ASD mommies are too frazzled to organize anything after a time). They need someone to offer to drop by and watch the kids while you run errands for a couple of hours. That's the kind of support you need. What we need is for you to believe us when we say she can't eat wheat and dairy, that we mean it. We need to be trusted that we know our child better than you do and respect our rules when it comes to food. What we need the very most from our F&F's though, is just a shoulder to lean on. ASD parents need to be able to blow off some steam and get out their frustrations (because there are many). I wish the F&F's of ASD families understood these simple gestures. Reaching out to ASD families is all that is needed....for someone to say, "I see you struggling and I am here....what can I do to help"?

Last that brings me to FAITH. Faith is something I have always had until recently. I think that I am so exhausted, so frazzled, so disorganized, so behind, so lost and so empty from autism sucking the life out of me that it's really hard for me see past the mountain of doubt standing before me. I know the way to get the faith hook-up...I just can't seem to get around that dang mountain. When I feel my faith start to slip away, I always begin to isolate myself. I withdraw within. I hide out and feel sorry for myself and wallow in my own self-pity. I hate being there. I hate that I am that person...but that's just how I feel right now. I feel like I have no faith that things will ever get better for us. I feel helpless and alone. But as a parent of an ASD child, I have had to have FAITH that all that I have done is worth it. All the heartache,sleepless nights and all the sadness is worth it. My faith is what keeps me from completely sinking under. Even though at times I feel like I am white knuckling it...I know that if I just hang on...God's going to send someone out to dig me a tunnel so that I can get through that stupid mountain. So to all the ASD parent's out there...hang in there and have FAITH! That mountain will move, eventually......

E is for ESSENTIAL FATTY ACIDS

This is another supplement used in the DAN! protocol. Most people that eat the standard American diet (SAD) could benefit from using EFA's since most of today's food is completely depleted of the EFA's. Here is an article written by Deborah Matthew, MD pertaining to the use of EFA's and why they work.


Autism is the fastest-growing developmental disability in the US, currently diagnosed in 1 in every 150 children. It is more common than pediatric cancer, diabetes, and AIDS combined. Despite these statistics, Autism remains poorly understood and often difficult to diagnose. This is partly because Autism is a spectrum disorder, meaning it manifests itself in many different forms. Some children with Autism may rarely speak and have difficulty learning to read or write, while others are so high-functioning that they are able to attend classes in a mainstream school. Unfortunately, there currently is no cure for autism. There are, however, some interesting theories on Autism that lend themselves to dietary interventions that may prove beneficial.

One theory is that Autism may be partly caused by a problem with metabolism of essential fatty acids (EFAs). EFAs are compounds that cannot be made in the body, but are essential for many biochemical processes. For some unknown reason, the brains of individuals with Autism may have problems converting EFAs from foods into the forms necessary for many biochemical reactions. When these biochemical reactions fail to take place, they lead to the signs and symptoms of Autism.

EFAs fall into two major categories: omega-6 and omega-3 fatty acids. Omega-6 fats are found in milk, eggs, meat, grains, processed foods, and many cooking oils, whereas omega-3 fats are found abundantly in flax seed, walnuts, and fish such as salmon, halibut, mackeral, herring and tuna. The relative ratio of omega-6 to omega-3 fats is critical to the health and development of the brain. As the levels of omega-6 fats rise higher and higher, there can be negative effects on cognition, mood, and behavior. As our society has become more dependent on processed foods, levels of omega-6 fats have risen. Many believe that this has helped contribute the increasing prevalence of Autism.

The major omega-3 fatty acids are DHA and EPA. Both DHA and EPA have been found to affect many aspects of brain function. Studies in rats have shown that changing the amount of EPA and DHA in the diet can alter the amounts of certain critical chemicals in the brain. Currently, there have been only a handful of studies on the effectiveness of omega-3 fat supplementation as a treatment for Autism. However, in those studies done so far, there appeared to be an improvement in overall health, cognition, sleep patterns, social interactions, and eye contact in Autistic children given supplemental EPA and DHA. Further studies are needed.

There has been no research on the optimal dose of EFAs for treating children with Autism. The dose range in current studies is 540-2320 mg of omega-3 fats per day. Doses in this range do not appear to cause any significant side effects. As long as EFAs are less than 10% of total dietary intake, they are considered safe. However, it must be noted that fish oil supplements can contain contaminants such as mercury, hormones, dioxins, and PCBs. Thus, care must be taken when purchasing fish oil supplements to find those that have been purified by molecular distillation and are described as pharmaceutical grade.

As the incidence of Autism continues to rise without a definitive cure, novel therapies must be considered. The negligible risks of omega-3 fat supplementation are far outweighed by the potential benefits, so it appears that this treatment should be considered in those suffering from Autism.

We use EFA's for our whole family, not just Ivy. We only use Nordic Naturals. They are by far the best on the market.

D is for DAN!

DAN! stands for Diagnose Autism Now! This is the protocol we have used to recover Ivy from autism. Many people chose this route. It is a biomedical treatment for autism. If your child or someone you know has a child that has recently been diagnosed with autism, I highly recommend you find a DAN! doctor in your area. They specialize in the treatment and recovery of autism.

What Is the DAN! Protocol, and What are DAN! Doctors?

Defeat Autism Now (DAN!) is a project of the Autism Research Institute, founded in the 1960's by Dr. Bernard Rimland. DAN! doctors are trained in the "DAN! Protocol," an approach to autism treatment which starts with the idea that autism is a biomedical disorder. Specifically, DAN! doctors feel that autism is a disorder caused by a combination of lowered immune response, external toxins from vaccines and other sources, and problems caused by certain foods.

What Do DAN! Doctors Prescribe?

Many regular physicians or pediatric physician's do not conduct extensive medical testing for autism, because they believe, incorrectly, that the only useful medical treatments are psychiatric medications to reduce seizures and behavioral problems. Some of the major interventions suggested by DAN! practitioners include:

-Nutritional supplements, including certain vitamins, minerals, amino acids, and essential fatty acids

-Special diets totally free of gluten (from wheat, barley, rye, and possibly oats) and free of dairy (milk, ice cream, yogurt, etc.)

-Testing for hidden food allergies, and avoidance of allergenic foods

-Treatment of intestinal bacterial/yeast overgrowth (with pro-biotics, supplements and other non-pharmaceutical medications)

-Detoxification of heavy metals through chelation, B12 shots, etc

View the list of practitioners who have agreed to assist families with autistic children in pursuing the DAN! approach.

C is for CHELATION

This is a type of therapy/treatment for the symptoms of autism.

We personally have chosen to NOT use chelation with Ivy. I could have really missed the bus here, but so much controversy has surrounded the treatment that I wasn't convinced it was in her best interest. I was lucky that Ivy responded well to other types of therapies. I had to use my "mommy instinct" and I have just shied away from the treatment thus far. I researched and chose an alternate method in clay baths. They are all natural and holistic. We use these baths here: Kids Clay . But I do want to say that I have read and heard from many a parent that have said, chelation has brought their children out of autism or greatly improved their symptoms. So, to the warrior moms that have tried it and were successful, I stand behind you 100%. You rock!

Because this is such a widely recognized therapy for ASD kids, I felt I had to present it to you. The following is an excerpt from Dana's View web page. Dana has a wealth of information on her website and it has been an invaluable tool to me over the last 4 years.

Several ASD researchers theorize that many ASD children have a genetic predisposition to metal injury, and the metals found in vaccines or other environmental exposures trigger a biological response which is manifesting as autism. There is also some evidence that several other diseases are also a result of metal toxicity, including allergies, asthma, fibromyalgia, memory issues, and depression. For a more complete list, click here.

Removing the metals from your child’s body is called "chelation" [key-LAY-shun]. This process is not without risks, but it has the potential of producing the benefit of your child significantly improving in functioning, even potentially to the point of no longer qualifying as autistic. But because it does have risks, you need to research it and determine for yourself if it is something you would like to consider for your child.

Chelation is a slow process, to make it as "safe" as possible, minimizing the chance of potential risks. Many children do show improvement rather quickly, but it can take as long as two years to realize the full effect of any improvement which will be related to chelation. And, if your child is NOT metal toxic, chelation will have basically no effect.

If you would like to learn more about chelation (because it's not really easy to explain) click here.

B is for BEHAVIOR

It took me a long time to understand that behavior is communication with ASD kids. Once I got that through my thick skull though, I was able to use it to my benefit. Now when Ivy gets cranky, irritable or discontent, I know there is an underlying issue at hand and it's up to me to figure out what the "real issue" is, so we can move forward. The following is an excerpt from Ellen Notbohm's TEN THINGS YOUR STUDENT WITH AUTISM WISHES YOU KNEW.

For children with autism:

Behavior is communication. All behavior occurs for a reason. It tells you, even when my words can’t, how I perceive what is happening around me. Negative behavior interferes with my learning process. But merely interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow.

Start by believing this: I truly do want to learn to interact appropriately. No child wants the negative feedback we get from “bad” behavior. Negative behavior usually means I am overwhelmed by disordered sensory systems, cannot communicate my wants or needs or don’t understand what is expected of me. Look beyond the behavior to find the source of my resistance. Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, settings. Over time, a pattern may emerge.

**On a side note, we went swimming today and had a little fun. Ivy conned me out of a hot dog on a real wheat bun today...behavior tonight? You betcha!!! Anytime we do dietary infractions, there will be a consequence to that (much to my disadvantage). But sometimes, you just have to let a kid be a kid and swim and have a hot dog on a bun all in the same day! Right now she is happy as a lark and I am happy that she is happy. :)