A Tale of Two Tots

I ordered a bunch of new cookbooks and have been trying recipes everyday. I have to say almost every recipe I have tried from Grain-Free Gourmet and Everyday Grain-Free Gourmet by Jodi Bage and Jenny Lass has been a success. And let me tell you, most of my SCD attempts have been terrible failures but these recipes come out perfect everytime! I tried the Souffle Bread from Grain Free Gourmet. It is basically the egg bread recipe but this one called for Dried Curd Cottage cheese and the texture and flavor came out great! It was firm and didn’t have an eggy taste at all. I made a huge batch and froze it.  I plan to just pull it out when we want sandwhiches or toast. I actually ate a piece tonight with sundried tomatoes, goat cheese and the SCD yogurt. It was delicious! Here is the recipe:

9 egg whites

pinch salt

6 egg yolks

2/3 cup Dried Curd Cottage Cheese (I get mine at Whole Foods) or SCD yogurt cream cheese

2 Tbsp water ( I used SCD goats milk yogurt in stead as it is pretty runny anyway)

Preheat oven to 300 degrees

Beat egg whites with salt until stiff (THANK YOU KITCHENAIDE!!)

In food processor mix remaining ingredients until well blended.

Fold into stiff egg whites

Line a large cookie sheet with parchment paper

Spread Batter evenely over parchment paper and Bake for 30 minutes

Remove from oven and carefully flip bread over and bake another 10 minutes.

Let cool and cut into squares.

I am so happy to report we have noticed HUGE changes in Mickey since starting Valtrex. We are on day 11 at 250mg 2x daily and have seen amazing gains. He has not gotten a healing rash yet but he did have red cheeks today which is often a sign it is working. He did so many things today.. where should I start! Well normally Mickey speaks about 80% in gibberish but has a very large vocabulary. He can say 7-8 word phrases with prompting to help but is not conversational and does not use advanced or appropriate language. His language is pretty much labeling (It’s a dog. It’s a cookie.) Or to tell us what he wants (I want to watch Charlie and Lola. I want to eat a cookie. -SCD of course!) He will attempt to sing a song if I am singing it but his version will sound like “Wheels tick da bus ticka  round da da” It is mostly gibbersish with a few words thrown in. It sounds like when you are trying to sing a song you don’t know very well and you end up faking your way through most of it and only know the chorus. So… today we were in Walmart and out of nowhere he starts singing Twinkle Twinkle Little Star (which we rarely if ever sing.) He sang the entire song, articulating every single word. It was clear and complete like any other kid would have sung. We were floored! We stopped in the aisle just staring as he completed it. He continued to sing it again fully and completely. Then later in the car he sang 5 Little Monkeys Jumping on the Bed in it’s entirity!! He also started teasing me in the car trying to make me laugh. He was acting like a typical silly little boy trying to be funny! Only a mom with an ASD child knows how huge this is. I have seen tons of little boys act this way being goofy and I never imagined how much it would mean to be when my own son was able to do it. He also started calling me “Mom” and Zeus “Dad”. Six months ago we were Ma and Da and usually of late we are Mommy and Daddy. He wasn’t saying it like he lost words, but more in a casual sense i.e. “Hey Mom, I want a cookie.” “Where’d Dad go?” Also, when we do flashcards and Mickey doesn’t know what something is he usually will just make up a gibberish word. I have to tell him to say, “what’s that?” Well today I was in the kitchen fixing something and he came up to me and said” Hey Mom. What’s that?” He asked me “what’s that?” several other times today. He also crawled around on his hands and knees pretending to be a dog, a cat and a lion. He did this all by himself without any prompts. And the real kicker… HE JUMPED!!!!!!!!! We have been trying to get him to jump for months. He jumped all on his own today. He does still need work on it, but it was a huge triumph! He also has taken an interest in PlayStation 3 and he can actually play the games. He doesn’t just pretend or try to play, he can actually do it. You should see this kid on a computer too. He can open the internet, start his games, switch games, play the games, close the games. It is remarkable. Did I mention he just turned 3 the end of this past Decemeber! I know I am leaving out a ton of other stuff today but we KNOW the Valtrex is working. We are sticking with it and hopefully will see the healing rash soon!

We took the kids to see the La Brea Tar Pits today. They are natural tar pits in Los Angeles where many prehistoric animal fossils were found. We saw the actual tar pits and actual skeletal fossils of Mammoths, giant sloths, sabertooth tigers and various other animals. There was a giant 12 foot mammoth that was our favorite. Mickey was in one of his moods where he did not want to stay with us, hold my hand or cooperate in anyway. There was a private birthday party going that was something we couldn’t believe. It was a kids party done in a circus theme with real performers, an actual elephant and tons of bounce houses and carnival games. It was opulent and in my opinion ridiculous. Um, don’t people in L.A. go to Chuckie Cheese’s? The hard part was it was gated off and Mickey couldn’t understand why there was 100 kids in there and he wasn’t one of them. We stood 10 feet away from the elephant with him crying and shouting, “Go see elephant!” Finally we told him we had to go buy a ticket and persuaded him to go into the museum. Once inside he was so distracted he forgot about the live elephant and decedant birthday party. He did a good job holding my hand for the most part until we came to a robotic wooly mammoth. Just as he was about to slip under the security rope, the mammoth snarled and Mickey jumped up and ran to hide behind my leg. From that point on he stayed very close to me! After the museum we drove up the street so Zeus could see where they film Hell’s Kitchen and so I could for once and all prove to him it is a studio and not a real resteraunt. I have never seen him so star struck! We rode Pirates of the Carribean with Candace Cameron and he didn’t care. He worked out just feet away from Jose Canseco and didn’t care. He ordered a Subway Sandwhich behind Kelly Cuoco, again nothing. However, the empty lot and building where Hell’s Kitchen is filmed did it for him. Afterwards we drove down Hollywood Blvd. to see Manns Chinese Theatre and the Hollywood stars. Mickey enjoyed seeing all the characters standing on the street. (various people dressed in costumes) We saw Elmo, Dora, Spiderman, Mickey Mouse, Superman, Batman, Optimus Prime (transformers) and Marilyn Monroe just to name a few. Meanwhile Minnie was taking a nap.  That rapped up our day in L.A.

Mickey and Minnie are doing really well. Minnie is talking up a storm and we are comfortable dropping her Early Intervention sessions to once a month. She will still recieve group, Occupational, Speech and Physical therapies. Her EI therapist came over to work with her and Minnie was using 2 and 3 word phrases! The therapist said, “Minnie, you are so smart!” Minnie replied, “I know” without skipping a beat. Just a month ago Minnie didn’t have any real solid words. It is just amazing the growth she has had. I really think diet and supplements have been key. Mickey is doing awesome too! He had his first OT session since a 2 week spring break and it was the best session we have ever had. Normally he whines and wants to go home or eat his snack. You would think OT was hard when really it is a giant playroom and he gets to choose what activities he does. But for a sensory kid it is a bit stressful. However, he was cooperative and even wanted to try new swings! He climbed, rolled, swung, jumped in the ball pit, did the trampoline (he is almost able to jump, but not quite yet), threw bean bags in a bucket and ate his snack. When it was time to go there was no whining or crying either. I checked in with his teacher who said he is still her model student, incredibly gifted, no compliance problems and he has even been trying to play with kids. He went up to another little boy and shouted, “GET ME” and they proceeded to play chase around the classroom. We also had a meeting with the school regarding feeling a bit disconnected with what he is doing in school and they have agreed to send out consent forms to all the parents so that they can film a day at school so we can all see how are kids are doing in class. I also volunteered to type up song lyrics and nursery rhymes they do in school so us parents can play at home with the kids and talk about their day. The school was very helpful in brainstorming ways we can feel more included in his life at school. We brought up all our concerns and evrything was addressed and handled perfectly. I feel so much better knowing he is in a good school program that really listens to us. They don’t ever make me feel bad for being “that” mom who is always spying on her kid and calling the teacher everyday. In fact, his teacher told me something that made me feel better. She said Mickey is doing so well because of all I do for him at home. She said the children who excel in school do so because they have parents who are working with them at home. She also is a big believer in diet and has been really supportive in making sure Mickey only eats what I send him.

Mickey has been saying alot of new things lately. Here are some examples:

I want a drink of water. (I said, “you want water?”) Yes, Mommy. I want to drink water.

Look up in the sky, it’s raining.

What’s that in the sky mommy? Its a white stick. (He saw the line of smoke from a plane)

I need more ammo (playing PS3 with Daddy)

Here Sissy wanna try? (Sharing the game controller with Minnie)

I am drawing a blank but their has been alot of cute things lately. We have reintroduced cod liver oil after I let it slip while we started Valtrex. I wanted him to drink the juice with Valtrex and not reject it if it had cod liver oil in it. I am not sure if it is the Valtrex or CLO helping with speech. We have not seen the healing rash from the Valtrex yet but we are only on day 10 and most people don’t see the rash until 4 weeks into it. I have decided not to wait any longer to try other treatments. I am taking the kids out of state to see a renowned homeopathist who is well known for treating ASD kids. We are really eager to start homeopathy treatments as alot of kids have fully recovered no longer needing special diets or supplements. We are still awaiting his most recent test results too. The test results will better tell us what direction to go in next. Overall the kids are doing well. They are happy and excelling in school and therapies. I am still struggling with the SCD but ordered some new cookbooks that have great recipes! I am just realizing cooking from scratch does not come easily to me! My kitchen is usually a disaster no matter how many times a day I clean it, but at least I am getting better! I am tired and overwhelmed but when the kids are having a good phase I am better able to sleep. When the kids are having trouble I just can not sleep. I cut out all caffeine (Goodbye sweet Coffee and tea!) because I was having severe anxiety attacks and insomnia.  I am also taking 5HTP for depression and Melatonin for sleep. I am back to taking all my vitamins and CLO and I am feeling better and sleeping better.  I have been reading more and trying to make time for me to just breathe. It isn’t easy because my mind is on autism 24 hours a day. I just can not wait till the kids are recovered and my worries and fears are gone. Soon. Very soon!

I found a great website by a woman who recovered her son using homeopathy. She has a blog where she talks about early detection signs in children and babies.  It is a good source if you are wondering if your child might be on the spectrum. Almost every parent I have spoken to with a child on the spectrum never thought their child had autism, but knew something wasn’t right. It wasn’t until later when they came to understand what autism was that they realized their child had alot of signs. Autism is confusing because sometimes it is hard to define what “normal” is. All kids are different so how do you know if your kid is just different or needs help. In all honesty for me it was pure instinct and intuition. I knew something was wrong, even when everyone was telling me everything was fine. The tip off for me was that he was having horrible tantrums, was speaking in jibberish and had some unusual behaviors. However, to everyone else he just seemed like a typical kid with behavior issues. I would say if you have that gut feeling that something isn’t right than do more research and learn signs from other parents who really understand what autism is. Here is a great link to a list of signs: Early SIgns

Everynight I reasearch information on possible causes for Mickey’s autism. Time and time again it leads me back to the great vaccine debate. It seems everytime we point the finger at vaccines, out of nowhere a new study comes out saying vaccines are safe and do NOT cause autism. Did you ever wonder where these studies come or who funds them? Are you aware that the CDC, American Academy of Pediatrics and government officials accept money from pharmaceutical companies? There is a long list of the best scientists, researchers and doctors in our country who have dedicated their lives and careers to studying toxicology and vaccines who time and time again try to convince the government that our current vaccines are NOT safe. Why would they risk everything they have if there findings were not true? They are not accepting money from anyone yet the government quickly wants to discredit them. Here is an amazing article that goes in depth into this topic.

Autism- Cut The Crap

I have recently developed a theory on a possible cause of autism. I recently spoke with my cousin about how odd it is that all of my cousins children are NT and my kids are on the spectrum. I am grateful that they have healthy children but it poses a good question, why me? I know mental illnesses run rampid in my family and science knows that autism and mental illness is biomedically similiar. So it is possible that their is a genetic suspetibility in my family, but again why only my kids? I was born in 1980 and am the youngest in family. I have been studying the effects of vaccines as well as their timeline.It was only in 1971 that the combo vaccine of MMR was licensed. In the 70’s and 80’s their was alot of controversy over the Dtap vaccine being unsafe. In 1983-1985 the first Hib vaccine was introduced (which I recieved) and was taken off the marker in 1985 for safety reasons. In 1986 the vaccine injury act was passed because so many families were coming forward for their children being injured by vaccines. In 1993 they took  one of the most controversial vaccines the Dtap and combined it with the Hib vaccine!!! This happenes to correlate with a huge spike in autism numbers! The numbers jumped from 1 in 10,000 to 1 in 150 with the kids born in 1994! They did a study in 2001 on kids in 14 states born in 1994 and took the average to get the number 1in 150 kids having autism. Now tell me there is not a link to vaccines!!!

So back to my original question, why me? When I was pregnant I noticed I was breaking out in this strange bright red, perfectly round pin sized dots all over my stomach, thighs, and breasts. I googled it online and read it was petechiae. I couldn’t find much info on it and it seemed more a mystery that doctors thought was broken blood vessels but it could be something more serious. If it is broken blood vessels than why are the spots so perfectly round? Then I read they could be related to Meningococcal disease!! So let’s travel back to 1985 when I was entering kindergarten and received my mandatory shots before starting school, including that Hib vaccine that was later recalled. The Hib vaccine is for meningitis. I have read elsewhere that a side effect of the Hib vaccine is petechia. The CDC also says petechiae can be an adverse reaction to the DTap vaccine, the most controversial vaccine of my generation. I understand that petechiae is a term used to describe more serious forms of the rash like that in menegitis, but what if I have a suppressed virus in me that was somehow triggered during the hormonal changes of pregnancy. At the same time I also began devloping random skin tags. I know that skin tags often occur in pregnant women. However, skin tags are another one of those things that they don’t really know what causes them. Is it possible that they could be viral also? All I know is as a child I received some contoverisal vaccines, fast forward 25 years, I break out in strange rashes during pregnancy. What if i carry this virus and passed it on in a supressed form to my unborn baby. He now carries the suppressed virus that later was triggered by an overabundance of vaccines including the now combined DTap-Hib vaccine that was introduced in 1993. That could explain the huge increase in autism in the past decade. It could be because my generation who may carry a suppressed virus is now having children who are getting the new vaccines and overloaded vaccine schedule. Just a theory but one worth looking into. I am taking Valtrex along with Mickey to see if I also break out in the rash at 3 weeks. (When taking Valtrex the ASD kids will break out in a horrific rash around 3 weeks. This is known as a healing rash and is a good sign because it means their is a virus in there and it is being attacked!) If I break out in the same rash,  I will know I too carry that virus. I am not taking MMR out of the loop here either because that is associated with measles and could very well play a role in my petechiae and Mickey’s autism.

Now is a good time to say I am not anti-vaccine. I WISH I could vaccinate my children. We live in one of the largest cities in America and often frequent parks, childrens museums and theme parks. In fact, there was recentley a measles outbreak in the area. It terrifies me that my kids are suseptible. I just can not vaccinate my kids because I know they have affected my children medically. I wish we had safer vaccines, with better ingredients and not so many so soon. The vaccines have gone from 10 by the age of five to now being 32 by the age of  eighteen months!! That is too many! Also, I don’t like the pharmaceutical companies experimenting on my kids. I also do not agree with some of the vaccines. If I had known that my babies newborn vaccine on the day they were born was for a sexually transmitted disease I would have declined. I do not have Hep B nor does my husband so why were my brand new babies vaccinated for it???? The pharmaceutical companies are profitting off of our children and not taking any responsibility for the damage. It is no secret that the American Academy of Pediatrics has accepted money from the pharmaceutical companies which is most definately a conflict of interest in protecting our kids. And the CDC knows exactly what is going on. You can read online about there offsite meetings that discuss the dangers of current vaccines as well as the flawed studies and data saying that vaccines are safe. It is all over the interenet and I urge you to read it.

When I was first pregnant, I heard about the vaccine controversy, but all I heard was mercury caused autism. I asked my pediatrician if their vaccines contained mercury and she said no. I thought I was safe and giving vaccines was the best thing to protect my child. I was wrong. My son is now paying the price.

Our pediatrician just wrote a book on Vaccines that is receiving rave reviews. In the book he doesn’t tell you whether you should vaccinate or not, but a he does educate you on the facts so you can make an informed decision. My opinion is, if you do not have autism in your family and you feel you must vaccinate, read his book and pick and choose the most crucial ones. Beaware of the ingredient list in each vaccine (it is scary!!!)Give them seperately- no combined vaccines like MMR or Dtap. And lastly, push them out over a longer period of time. Be informed! If you are pregnant or have small children do your research.

I have been battling some serious depression for the past few days. Mickey has been stimming, losing words, talking mostly in jibbersish and even lost his alphabet and counting. He has been using echolia (repeating everything!) and jargoning (repeating sayings from TV). I just feel like every thing we have been doing is just a temporary fix. It is like putting a bandaide on a massive wound. It has only been 6 months and I try to keep that in mind. My original plan was to have him recovered by the 1 year anniversary of his label. The first 6 months we mostly did diet, supplements and herbal remedies. We had some great success and he really has come a long way, but he is not cured. It is just a roller coaster of getting him balanced and stabilized. I have developed a theory which I will share in my next post about autism being a viral condition. Whatever is in my baby, I just want it out! For the next 6 months we are going to attack the autism more aggressively. We have started Valtrex, an anti-viral, to help weaken the virus enough that his body can fight it off. Many kids have been recovered from this and because Mickeys autism points to being a viral condition we are holding alot of hope for this. However, we are not putting all eggs in one basket. I am taking him out of state to a specialist who has recovered many children using homeopathy. Homeopathy is a complex science that has been used since the 18th century. I recently read a book by Amy Lansky called The Impossible Cure. She recovered her son using homeopathy and her son’s symptoms sound EXACTLY like Mickey’s. So withing the next month I plan to get Mickey started on a homeopathic remedy along with the Valtrex. My goal now is, by December to have him in a place where I feel he is well on his way to recovery. I just can’t take this battle anymore. It is so up and down. One day he is talking and hardly distinguishable from a Neurotypical child. The next day he is barely talking and off in his own world. The other day the checker at Trader Joes tried talking to him and made a comment that, “Boy, he is just off in his own world.” Of course he didn’t know Mickey has autism but the comment still stung. I was so close to giving up. Their is another blogger online called Autism Diva. She is very anti-biomedicine and believes that we should just all give up and except that are kids were born this way and love them for who they are autism and all. I started to wonder if maybe that is what I needed to do. Then I read a line in Amy Lansky’s book. Forgive me for paraphrasing but I don;t have the book in front of me to deliver a straight quote. She said she hates it when parents say that they accept their kids autism. She says, how can you accept the autism? Your child is not better off having autism, they will be better NOT having autism. It is just easier for the parent to give up trying to fight it and accept it. That made me think. She is right. I KNOW my son was not born with autism. I have to fight everyday to beat this disease so I can get to know and have my son back. This disease has stolen him from me and I WON’T let it win. So to say the least, I am back in the game. I have set new goals, strategies and I plan to have my son back by the end of this year. Am I shooting high? Maybe, but I have no other choice.

Autism is draining. I have hit a wall. Diets, therapies, school, meetings, IEPs, IFSPs, Dan! doctors, regular pediatricians, coordinators,psychologists, support groups not to mention the compliance, sensory and behavior issues that come with autism. I am torn between focusing so much on autism and burning out and feeling like I have a small amount of time to recover my son and I HAVE to focus on autism. The older he gets the more reality and fear set in. Zeus and I have talked and we have accepted alot of traits of autism. We know Mickey may not be a social butterfly. He may still enjoy organizing and lining things up. He might still spin on occasion. He may shriek and flap when he gets excited. He may have no interest or motivation to do things most kids enjoy. So what if he beats to a different drummer. The things we feel are crucial are his speech and feeling comfortable in this world. I want him to grow up and be able to communicate, hold a job in what ever he is interested in and one day find a wife to share his life with. We envision him being similar to his dad. His dad is a loner, and isn’t interested in what most people are and is overall a quiet person. If that is how Mickey is than we can accept that. What I can’t accept is any physical or mental disability caused by the vaccines or other toxins in his body. Accepting Mickey’s personality is one thing but I need to be sure that I am dealing with his personality and not the posion in his body. Now is the time we move beyond the diet and start more aggressive treatments. We wil start Valtrex and Homeopathic nosode treatments. Chelation is a last resort and we will cross that bridge when we get to it. We also have an opportunity to try HBOT for free so we will do that sometime this month. I love my son so much. I just want to make sure I am doing everything possible to give him his life back. As for Minnie, she is doing AWESOME!!! She is talking up a storm and is about equally verbal to Mickey. She is quirky and cute and full of so much energy and spunk. She just cracks up everyone who sees her. I often hear she has a ton of personality for such a little body. Her EI therapist suggested we get her in commercials! She is excelling in speech, fine motor and Early intervention. We are getting better with socializing and sensory issues but she still needs help with Gross Motor and Physical Therapy. I bought her some classic baby walking shoes (the white leather ankle shoes) and they help ALOT! It cut her falling down by 50%. She has even been trying to jump lately. I am really not to worried about her anymore. She still has digestive and allergy problems so she will remain on the SCD diet until we can help her with that but otherwise she is great. We have noticed she doesn’t show interest in toys or creative play. She would rather read books, look at flash cards or do some form of art such as painting, crayons, playdoh or stickers. She LOVES art! Alot of kids on the spectrum show unusual abilities in art so maybe this will be Minnies area of talent. She also loves music, singing and dancing. Her therapist finds it a bit unusual that she isn’t interested in toys. She can get her to play a little bit with some toys with ALOT of coersion. Overall, her therapist finds it unsusual but said it could be a good thing, maybe her interest just isn’t in toys but rather in art and books. So after thinking about things, I have decided my kids might always be a bit different but that can be a good thing. The only real concern I have now is cleaning out the toxins and viruses from there bodies and getting them fully talking. Everything else is livable. Even the compliance and behavior problems can be tolerated. My kids are strong willed and spirited. It may be challening at times but these can be great attributes when they are older. I have realized I don’t need, want or expect my kids to fit in a certain box. With autism comes some quirks and that is ok with me. 

I took the kids for the newest round of tests. This time it was blood. We took them to a place that specializes in various treatments of autism. ( I love this place!) It is the only place where I feel like we fit in! The workers all have kids on the spectrum and we meet tons of other families there for Hbot or other treatments. Minnie was in the playroom and sitting in her usual “W” stance where she sits on her knees and fans her legs behind her in the shape of a w. I said “Fix your feet” and she immediately did. A mom in the room said, “Wow, she learned that early!” No one else in the typical world would understand what fix your feet meant, but ASD moms know from therapy. (It is for kids with low muscle tone who have weak trunk muscles and get tired sitting they often distribute there weight by doing the W sit but they need to build up the trunk muscles so we don’t allow it.) Well at the center the kids were playing in the playroom and a little boy who is 3 months younger than Mickey was playing in there. His mom said his brother was in the Hyperbaric Oxygen Tank (a treatment to stimulate brain function in kids with autism.) We could tell the 3 year old in the playroom was neurotypical because he was talking up a storm. It really hit us hard that Mickey still isn’t where we want him to be in his recovery.  We also saw some older kids who were bright, beautiful and friendly but very severly autistic. It just really hit us that the clock is ticking on Mickey’s recovery. My husband who is rarely involved in the kids treatments, began asking me about starting Valtrex with Mickey. (an antiviral that we hope will clear up the internal measles from the MMR vaccine) I could tell he was upset by seeing the NT kid so much more verbal than Mickey.

The kids filled up 4 vials of blood each and despite the numbing cream. screamed non-stop. It was more that they didn’t want to be held down rather than pain. At least it is over until June when we finish the tests.