Red Flags of Autism

This site lists some symptoms that might point to Autism.

Autism tidbit for the day: More children will be diagnosed with Autism this year than Diabetes, Cancer and AIDS combined.

Autism Awareness

April is Autism Awareness month and in an effort to bring some awareness to the challenges and the blessings that we in the autism community face, I am going to try to share various links through out the month. I hope you will take the time to read and learn.

Today, I am going to share as blog post from 5 Minutes for Special Needs. This one spoke to me because I have been there done that. My daughter has high functioning autism, could be considered an Aspie (a nick name for those with Aspergers). These days, most people just assume she is shy. Her quirks come out only if you spend a bit of time with her. She is shy and reserved and usually very well behaved. But, when she was young, her ASD tendencies were more obvious.

I was the harried mom with the screaming child with no shoes on (she refused to wear shoes for a year, due a sensory issue that goes with ASD) racing to get my shopping done as soon as possible because I knew everyone else in the store hated me right then, but couldn't change the fact that my child was on sensory overload. I have gotten those looks. I have gotten those comments. Now, when I see a child misbehaving and I can tell it is not just a misbehaving child (and yeah, I have had those moments to where I had to rush a child out because they were just plain throwing a toddler tantrum.) I do my best to show compassion and understanding to the harried and embarrassed mother.

With so many more kids getting autism, I would think more people would get it now. But, I am realizing that if you don't live it, you don't get it. So, in an effort to bring understanding, here is another mom's story.... Click HERE.

Here are some quotes that stood out to me..."I hope she and others can learn that our children deserve the same respect as any other person, and that just as we rightfully accommodate other disabled people with things such as ramps, we should accommodate our autistic members of society with understanding and a lack of judgment." This is something I have though a number of times. I see people bend over backwards to accommodate someone with an obvious physical need (which is great), but display complete lack of understanding or patience for an autistic child or someone who's special needs are more internally manifested.

"So I ask that next time you see a child acting unusually, or next time you see a person who is acting in a way that you consider inappropriate, take a minute to consider that you don't know the whole story. Understand that there might be factors at play that you aren't aware of, whether they be behavioral, emotional, medical, or something else. Remember that some disabilities are invisible. But mostly understand that the wonderful diversity of all of our members of society makes our world as a whole better. If we all work together with understanding, compassion, and kindness, we can grow as a people."

I won't comment on SmockityFrocks' original post as I have not seen it nor do I know her motives. But I do understand the hurt that is expressed by moms who's children have been judged unfairly whether intentionally or not.

~~~
Autism fact for the day: Prevalence is estimated at 1 in 110 births.

Autism Awareness

April is Autism Awareness Month and April 2nd, is World Autism Awareness Day! To kick off the celebrations, you are all encouraged to "Light It Up Blue" on the evening of April 1st to help raise awareness for Autism and Autism Spectrum Disorders. Dress up your blog, your Facebook profile, tweet about it on Twitter... DO WHAT YOU CAN to help raise awareness!

Wear blue on April 2 for Autism Awareness!

Support Autism and enjoy yummy fondue!

Got this email from the Melting Pot.

"You may not have known this, but, National Cheese Fondue Day is Sunday, April 11^th. We asked our Facebook fans to choose the recipient organization of proceeds for the day, and they chose Autism Speaks. So, we will donate $10 for every cheese fondue purchased on April 11^th to the nonprofit dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention, treatments and cure for autism, and to advocating for the needs of affected families. Thank you.

And, coming soon, a Gluten Free Menu!

~~~So, get out there and enjoy a cheese fondue and support the cause! And I am so excited that they are getting a gluten free menu too! Though to be honest, I never take the kids! Melting Pot is always a date night for us.

I am thinking we should have an impromptu support group meeting at the Melting Pot on April 11! Anyone up for it?

Survey concerning experiences in worship settings

This email was sent through Mo-Feat Missouri Families for effective autism treatment). I thought it was very timely as my friends and I struggle to make a place for our autistic children in the church. I have so many friends who just don't go to church because there is no place for their children. So, I thought I would share this survey in hopes that it will give us a voice. As it mentions in the email, there is also a survey for worship leaders upon request.

~~~~

March 20, 2010

Dear Self Advocate or Parent of an Individual with a Disability:

Greetings! Thank you for having the curiosity to open this e-mail! I hope this message finds you in good spirits, and that you are willing to share a few moments of your time with me.

For the past few years, I have developed a deep interest in the issues surrounding individuals with disabilities and their families as they pursue inclusion within worship congregations in their community. As a person with a disability, but, moreover, the parent of an individual with a disability, I came to a realization that our acceptance within our chosen house of worship was not always the same level of acceptance that individuals or families with typical children received within the congregation. My interest in this issue grew, and, as I had the opportunity, I explored and discussed this question with self advocates and other parents of children with disabilities.

Later, when time allowed, I had the opportunity to pursue studies at Central Baptist Theological Seminary in Shawnee, KS. As I discovered a path within my seminary life, I began to seriously look at the issue of full inclusion, or what I prefer to call “complete embracing” of individuals with disabilities and their families within worship congregations. I have now come to a point near the end of my seminary journey, where my interest in worship congregations and individuals with disabilities/their families is the focus of my thesis.

Below you will find a link, via an online survey service, to a brief, 25 question survey concerning experiences of individuals with disabilities and their families in respect toward their attempts to become involved in the life of worshiping congregations. This survey is anonymous, and your responses to the survey itself will only be viewed in an aggregate/collected manner. There is an opportunity to leave personal comments; however, no specific identification is required for this section of the survey. The personal comments section is there for your use, if there are any additional comments you choose to make.

The whole process of the survey should take approximately 15-20 minutes, and the aggregate survey responses, without the individual comments, will be made available to you for viewing upon request (see e-mail below). A similar survey is being circulated to congregational leaders of various religious groups to solicit their responses to a similar survey concerning their experiences of including individuals with disabilities and their family members in congregational life.

The survey can be found at: http://www.surveymonkey.com/s/TYGRJNV

The survey will be open from March 24, 2010 until April 25, 2010. This will allow me some time to review and analyze the surveys that have been received, and to incorporate the outcome into the body of the thesis work. If you would like to share this survey with another self advocate or family of an individual with a disability, please feel free to do so. If you would like a specific worship leader to receive a copy of the survey for religious leaders, you may, with their consent, send their e-mail address to me at the yahoo account provided below. In turn, I will send them the appropriate survey for completion.

Thank you again for your attention to this survey. I am in your debt for the time you have spent and the effort you have made in completing this survey. If you have any questions, please feel free to e-mail me at: jennyhatfieldcallen@yahoo.com .

Sincerely,

Jenny Hatfield-Callen

Seminary Student, Central Baptist Theological Seminary, Shawnee, KS

The Everything Parents Guide to Sensory Integration Disorder by Terri Mauro

A good explanation of Sensory Integration Disorder, how it affects people and strategies to cope with it. This will be a great addition to my support group library.

I saw a lot of Jessica in this book. Even some things I didn't associate with SID. I also saw a lot of myself in this book. No surprise. What was surprising was finding a whole chapter about that! Dealing with SID in the parent and how to reconcile our SID with our child's SID. Guess I shouldn't be surprised. I have never denied that Autism is partly hereditary and SID goes hand in hand with ASD.

A couple of articles sent to me today

Vaccinations: Safe or Unsafe? (Baltimore Chronicle and Sentinel Jan 26, 2009)
Excellent article!

And this one is all over the news. Mercury in High Fructose Corn Syrup. Isn't that lovely? So much for all those wonderful commercials the corn industry is putting out about how great HFCS is. But, then again, we know mercury is perfectly safe don't we? EYES ROLLING.

WHAT!?!

I was reading a website with a raging scientist blasting Jenny McCarthy for being an idiot. Ugh. Anyway, one of the arguments in the comments was that we mothers of Regressive Autistic children just think our children regressed. That we all think our kids were developing on schedule when really they weren't. Someone came to our defense and said well maybe first time moms might not know when our kids did what, but that after you have one ASD child you are watching the other ones more carefully and you know exactly where they are developmentally.

Ok, WHAT!?! Both of them are wrong!

Aren't most first time moms recording every time their baby burps? (Ok, yeah that is extreme.) But, it's the first one that we are documenting the wazzooo out of. We know when our kids did what. And if we are seeing a doctor as all these pro-vaccine people want us to be doing on schedule, isn't the doctor documenting the development? Moms know if their kids are "on schedule" or not.

I remember our ped being amazed that my 4 month old was sitting up by herself. I remember her having amazing head control very early on. I remember her impressing people with her verbal skills at 8 months. It's on video, it's in the baby books, it's in the daily records that I took of her life, it's in the pediatrician's records. I am not "imagining" regression.

And what ticks me off the most about this pro-vaccine guy is that he insists that Jenny and the rest of us are really anti-vaccine. He doesn't believe that she just wants less toxic vaccines and a safer schedule. He insists she wants to get rid of vaccines totally for some wacko, unfounded reason. Um, these are all the same moms who did vaccinate their kids! We are not anti-vaccine, we are pro-SAFE-vaccines. We just don't want to see anymore more kids overloaded and sick. We aren't the leaches of society. We are trying to help society! We're healing our kids. What's he doing for us? Sitting on vaccine paid for research that is not conclusive and calling us idiots and liars.

And yes, my kids ALL have been vaccinated. They are selectively vaccinated. But all the major illnesses are covered. And yes, I vaccinated them even when I no longer bought the party line that they are completely safe. I just prayed a whole lot harder! If I could do it over though, I would do it differently. I would have spread out the schedule a whole lot more. And I would have done titers for all the boosters.

But, I am with Jenny. GREEN OUR VACCINES!!

Next time I will ask more questions!

I read on Generation Rescue that they did a phone survey on vaccines and autism. I am pretty sure it was mostly a west coast thing. But it reminded me of the time I opted out of a phone survey on vaccines. I was suspicious. I didn't want some unknown entity asking about my selectively vaccinated children. But what if it was Generation Rescue!? I am pretty sure it wasn't. But, I would be kicking myself big time if I realized that they were trying to cure autism and not turn me into Big Brother and I turned them down! More likely it was Big Brother.

Mother Warriors by Jenny McCarthy

I actually finished this book a couple of days ago, but I needed to process and do some research and think about what to write. Still not sure if I am completely ready, but I figured I better get some thoughts down.

Another great book on Autism and healing. Jenny tells a little more of her story, goes into the efforts she has been making for more Autism awareness, her efforts to get the AAP to recognize and learn DAN! protocol, etc. She also tells some amazing stories of Autism recovery as well as one tragic story of recovery and loss. She reminds us that Autism is not just a genetic disorder. It is not just a neurological disorder. It is an illness. That these kids are sick. They have so many health issues that can be treated. Kids in pain, kids with infections raging in their bodies, with leaky guts allowing toxins to enter their brains, will exhibit neurological problems. But the body CAN be recovered. They may try to convince us that it is untreatable, but these families are proving them wrong. As they say "come see my science".

Jenny would not have been my first choice for my advocate and spokesperson, but I am still very thankful for all that she is doing for our children and for us. She is doing an amazing job and I pray that it pays off.

As with Louder Than Words, I wish the story could have been told without some of the harsh language and questionable morals. But, I am grateful to her and the other parents for being willing to share their stories.

My favorite quote is at the very beginning of the book:

"All illnesses have some hereditary contribution. Genetics loads the gun and environment pulls the trigger."
- Dr. Francis S. Collins, Director, National Human Genome Research Institute, National Institutes of Health.

Amen. Yes, genetics plays a huge part in Autism, just as it does in all other auto-immune disease. My husband had a genetic disposition toward Diabetes. But something triggered the attack on his pancreas and caused the Diabetes. My daughter had a genetic disposition toward Autism. I see enough minor ASD traits in both my dh and I that there is no way I will deny the genetics. But, the environment pulled the trigger. She was not born Autistic. She was born with the potential to become Autistic. And it's probably thanks to my MILs reaction to the Hep B vax that she is not severely autistic. Because that caused me to refuse to load her up with HIGH dosages of mercury at birth which would have had increased the impact of the environmental bullet.

One environmental impact that I had never considered before was brought to my attention by one of the parents. They mentioned a connection between Herpes 6 virus and autism. Knowing that Jess has fought a mighty battle against a HPV in the form of warts sent me on a research. I wasn't sure what HPV number it was and wanted to see if that was the connection. Nope. HHV-6 is the Herpes virus associated with Roseola. There is a theory that latent Roseola virus in combination with the live viruses in certian vaccines may be one of the causes of the auto immune response. So, not only did my daughter have a measles issue, her case of Roseola, too close to a live vaccine, may have played a part. Too many viruses for the immune system to deal with at the same time. Who knows. All I know is both her case of Roseola and what I am convinced was a mild case of the measles where both horrible experiences.

Here is what the "Warrior Dad" in the book had to say:

Autism is a combination of infections and toxins that can ultimately lead to a neurological breakdown. It could be many types infections: bacterial, fungal, viral...a recent study found children with autism are 16 times likely to have mycoplasma, chlamydia or herpes virus 6. And that's just three of the many infections these kids can have. There are also studies showing that viral infections cause toxic metals to move to the brain. Other studies show that certain commonly undiagnosed bacterial infections in these children's guts can make toxins like mercury even more toxic. - Stan Kurtz.

Parents are recoverying their kids by fighting these infections and viruses. The autism symptoms are dissapearing when these illnesses are cleaned out of the bodies.

I also like the analogy of Autistic kids and the canaries in the coal mine. How their sensitivies to toxins are just a warning to the rest of us. She says:

I look at the older generation right now and and the rise of Alzhiemer's, Parkinson's, MS. Then I look at this young generation and see autism, ADD, ADHD, allergies childhood diabetes, and Tourette's and wonder what our future will look like when my generation grows old. If before us is Alzheimer's and Parkison's and behind us are all of these other diseases and disabilities, shouldn't we be a little worried about what the h--- we're gonna get?

Another thing I noted was that not all of these children regressed at 15-18 months. "Coincidentally", those children who were given their MMR vaccines at earlier ages regressed at earlier ages. One, who was given muliple live vaccines at the age of 6 months became Autistic very early. They try to convince us that we connect autism with vaccines because it just happens to manifest at the same time the MMR comes onto the schedule. How interesting that it manifested at the same time as the shot in all these kids, no matter what age they got the shot. Hmm. And remember, there is NO mercury in live vaccines. This is not a mercury issue. (Mercury and aluminum, etc is a side issue that doesn't help.) This is a viral issue. This is injecting live viruses into a body that may be immune suppressed for one reason or another. Sometimes it is the presence of illness. (Do you know how often doctors "catch up" multiple vax when kids are brought in for a sick visit?"). Sometimes it is a mitochondrial issue. There can be any number of reasons that the body is immune suppressed at the time of the shot, causing the body to be overloaded. I also find it interesting that a lot of these kids (like mine) were developing on time and sometimes ahead of schedule before they regressed. They were very neurotypical up until the time the trigger was pulled.

Jenny also touches the issues of siblings and spouses. Often when a mother is battling to recover her child, she gets tunnel vision and the rest of the family suffers. 80% of families with Autism deal with divorce. Siblings often feel left out in the single minded pursuit of dealing with the Autsim. This is a sad reality. I am fortunate in that my daughter is not severely autistic. I have not been faced with the same battle that many of these parents are dealing with, so I can't put myself in their shoes. But, I came to the conclusion that I must not rank up with the rest of the warriors because while I am very fanatical about doing what I can for my daughter, I am not willing to lose the rest of my family in the process. We are all in this together.

I admire these parents for fighting the battles for their kids. Pulling the toxins out, cleansing out the viruses, the bacteria, the yeast that is so prevalent in our autistic children is not a fun job. Often the symptoms get worse as the infections are moved out of the system. But the reward is great. The stories are awesome.

Of course I always come away from reading these awesome stories of recovery wishing I could afford some of these tests and treatments. There are so many things I want to pursue.

A must read book for parents of children with ASD, for doctors, for everyone. One thing I liked about this book was that at the end, there is a list of resources AND a list of DAN! doctors.

Also check out:

Age of Autism
Daily Web Newspaper of the Autism Epedimic

Generation Rescue
This one has some great resources. Especially check out the "Science" tab. I love the rebuttals for the party line that the CDC and AAP and the like try to feed us. Esp the one about the "absolutely no connection between vaccines and autism". Yeah that is about as indisputable as the theory of evolution.

TACA (Talk About Curing Autism)

Among other things, TACA is on a mission to Green Our Vaccines. They are not against vaccines. They are on a mission to get the vaccines cleaned up, made safe. (Don't believe that all mercury has been removed from vaccines, check out the truth on that one.) They want responsible schedules. In the 1980's there were 10 vaccines on the schedule. Back then, there were 1 in 10,000 cases of Autism. We now have 36 vaccines on the schedule and we have 1 in 150 cases of Autism.

Recover Videos
Videos documenting recoveries from autism and other chronic illnesses.

Anyway, I have not had the THOUSANDS of dollars it would take to do all the tests and all the treatments. But, we have used what DAN! protocol that we could and have seen amazing results, even with the little we have done. Jessica is living proof to me that this stuff works.

Anyway, thanks for reading my disjointed, scattered thoughts. It is late and this doesn't even touch on all that I want to say and what I have learned. Forgive my scratching the surface on some of this stuff. It's taken me over an hour to write this and if I had more time, I could do a better job of pulling it all together. Read the book, research. Oh, try searching on PubMed if you want scientific studies published in peer reviewed journals. The evidence is out there.

Lunch Lecture on Autism

My friend, Sharon, is a Juice Plus distributor and offered to send me to the lunch lecture by a lady name Jean Deasy on nutrition and autism. That was a very nice offer and I took her up on it. I was very interested in seeing what this lady had to say. Her credentials list her as a mentor in autism and biomedical treatment and yet this was a JP+ lecture. Turns out that it is a member of the Biomedical email list that I am already on. After I put two and two together, I remembered her posts to the list.

Anyway, her son has done the DAN! protocol and done very well on it. But, she started doing JP+ in addition to that for the nutrients. Turns out he did so well with that, he has weaned off the other supplements and the GF diet. Hmm, sounds good to me! JP+ is much cheaper than DAN! supplements!

Of course, I know there are lots of other factors involved. There are still things like chelation, etc But, I can't afford any of those anyway. At this point, we are struggling to do supplements. As I was telling my mom, JP+ never really appealed to me as I am not a vitamin type person. Just doing all the DAN! stuff is out side of the box for me. But, if she could do well on a few chewables, rather than all the pills and stuff she is on now that I have to mix into food and stuff, that would be great.

I was impressed because 98% of the lecture was not news to me. It was all the stuff I have already researched and know. Additives are toxic, Lancet study in the UK has led to taking certain additives out of foods there, but it is considered nonsense here in the US, nutrition plays a key role in the neurological and gastric health of autistic children, etc, etc. She threw in some titles of books that I haven't read yet, but mostly it was all stuff I already know and believe and have seen evidence of. So, to hear from someone who has done the same research, gone the biomedical route, seen the miracle cure of GFCF and such and believes in JP+, it makes me think it might be something to look into. This is not someone who discredits DAN! protocol and thinks it's nonsense. Her son is still in the care of DAN! physician, a DAN! doctor that encouraged the use of Juice Plus.

So, I am considering it as a trial thing. Haven't made a decision yet. We will just see. I have Jacob on JP+ already, for his GI problems. Much better than the so called safe laxative he was on for years. I am not one to just jump on any old bandwagon that comes along. But, I also know that I can't afford to do much else and I want to do something for her! This could be better than nothing at all.

Life

We are plugging along here. We have been working hard at getting our hours done for school so we can take the summer off. We really have done pretty good at keeping on task this year, despite all the trials, but we are still going to have to work hard this month. I wish we had a "days" requirement instead of an "hours" requirement. It seems if you finish your books and spend as many days in school as the gov schools, that should be enough. Oh well, I can't complain, we have very easy laws.

The car breaking down was a help in that it forced us to slow down and stay home more. I have kept that up and really try to restrict the amount of running we do during the week.

Jessica and I had her IEP meeting at her new school last week. Her new ST is the ST she had back when she first started out in the gov school for speech. That is neat. I have mixed emotions about the ST. She has always challenged Jess. Which is good. Though, when I first handed over my barely verbal, very shy 5 year old with Autism to her, I wasn't so thrilled with it. I thought she should be easier on Jessica. Not push her so hard. But, it was good for her. By the time the ST moved on to the middle school, I was sorry to see her go. Sometimes they need more pushing than we mothers will give. Though she was also the one who always pushed for more involvement in the gov school, or enrolling her. And that has not changed. Well, she didn't try to push for her to enroll, I think she has accepted that at this stage we aren't changing our minds. But, she did encourage Jess to join some clubs at the school. We are considering one of them. But, it will be a matter of prayer.

On the one hand, I don't want to hold Jess back. But, on the other hand, I am still not sure about turning her loose in gov school. I remember what it was like being a shy kid in school and the way kids treated me. I remember being given inappropriate attention. How much worse would that be for an ASD kid? How close will they watch out for her? No one was watching out for me. So, we will see.

Thursday

Another day on the road!

The kids all had a dentist appointment today, so we headed over the river first thing this morning. The appointment went well. They all need to work on brushing, but no cavities. And I was quite impressed that they seemed prepared and completely ok for me to come again and say no to their flavored toothpastes and the fluoride. They didn't even blink an eye. I guess it was in our records. But, I was fully prepared to have a discussion on flouride. We opted out last time, but we didn't leave with a final opinion on it. It was since that visit that we became firmly against flouride treatments. But, no arguments or even discussion about it! And since their teeth were all healthy, obviously it is not hurting them to be fluoride free.

Alex had just as many teeth loose as Jessica did on the previous visit. But, by now I knew it is $96 a tooth (pre-insurance) to pull teeth and I opted to do it myself! We got two out today, but the rest are not quite as loose as the dentist indicated. We will do some wiggling and get them out when they are ready.

As we were in the area, we headed to the DAN! doctor. What I didn't know the last time we were there was that Jessica was running out of chewable enzymes! We ended up having to use that free bottle of capsules for a week as it was all we had! That was challenging but at least we had them. I bought her a new supply of chewables today.

While there, I weighed her to see how she is doing on the new regime. She has LOST weight! That is not what I was expecting! The doctor was unconcerned and said she is still well within normal. But it was weird. I know we have had her more active lately and maybe that has made a difference. Maybe not being able to graze as much has made a difference. I don't know. Maybe it was just a fluke. Time of day, scale has been moved, who knows. She also "shrunk". :-) She measured an inch shorter. So I know something was off with that.

I decided to treat the kids to a new restaurant, across the street from the doctor's office. I had heard about it on the celiac email list as a place with GF items. It was so delightful to order food for Jess from a menu! And they were great about marking it as a gluten allergy so that a new pan was used and everything. We will be back! Unfortunately, Alex declared she is "not a noodle person" and next time she was packing a sandwich. Ugh. The whole point is that I don't have to make food to eat out! We did discover potstickers, which does like, so she can just eat those!

Jessica with GF Pad Thai

Someone saw me taking pictures and offered to take on of us all.
Why not?

This time, we took time to make a side trip to Andrea's gluten free bakery. It is small! I can't even imagine where they packed all the people for the DAN! doctor's speech! I bought Jessica some sugar cookies and some small pizzas. We discussed soft pretzels. We were told they were thinking on it, but hadn't worked out the logistics on them yet. GF dough is not easy to roll! I told her if they ever figured it out, Jessica would be a customer for them! She misses soft pretzels. Actually, the whole family misses soft pretzels since I refuse to buy them for anyone until we find some for her!

Stopped by mom's for my sewing machine and stuff for World Changers tomorrow. Yes, it lives at my mom's house. It gets used there more than at my house. LOL. The sewing gene skipped a generation!

Home for school. We got in several hours, but we got stuck on one subject :-). We just couldn't put the Corrie ten Boom book down. The Christian Hero books are always cliff hangers. But, this one definitely was a "don't stop now" book! So, we finished the book today. :-) Not sure what we will read next. I think I may have to look for some good age appropriate books on WWII.

The weather is gray, but nice out, so the kids enjoyed some time outside with friends after school.

Autism Support Meeting

I finally made it to an Autism Support Meeting. A lady at church has been telling me about it for several months, but I just haven't been able to get to it till this month. It was good. Nice to sit around and chat with people who have btdt. They advised me to get a case worker and try to get respite for Jess. They said, even if I don't need respite, that I need to get her a case worker before she is 18 and needs transitional services. So much to think about. On the one hand, I don't want to think she needs any of that. I want to avoid anymore entanglements with the government. On the other hand, what if she needs it and I didn't do anything? Being the mother of a child with ASD is so full of decisions and they aren't easy ones.

I also found out that our DAN! doctor moved! I knew she was planning to move (offices), but last I asked about it, they didn't have any immediate plans. A lady at the meeting informed me that it's done! Would have been nice if the office had let us know that! I was planning to drive out and pick up new supplements soon! I am so glad I didn't go to the old office and find it is not there! It's not exactly around the corner. The new office will be farther away. Not at all convenient. But, I am just glad we have one close enough we can go to.

Oh, I also found out that the homeopathic doctor that I went to as a teen is now a DAN doctor. Kinda cool. Of course my dh would find that further evidence that DAN protocol is quackery. He has never believed in homeopathic meds. Though he does admit that we are seeing improvement since starting the protocol.

Anyway, I went expecting relief from being overwhelmed and came home even more overwhelmed at what I need to decide.

DAN! healiing

We have witnessed another possible sign of healing in Jessica this week. I won't go into details (I am vague today aren't I? But there are somethings that I can't post on a blog.) But, it is an encouragement to us that the DAN! treatments are working.

We also got the pathology report on her warts today. They were just planters warts. The doctor and I both thought that is what the results would be, but it is good to have it confirmed. I never considered the possibility that they could be anything else, until he wanted to biopsy them to be sure. It's always kind of scary when doctors take measures like that! You start to think, "what if?"

As I said the other day, she is healing nicely from the surgery and soon we hope to be completely done with these bothersome little warts!

Autism and your Church by Barbara J Newman

Autism and Your Church

This is a resource book for helping set up a ministry for special needs children and adults in the church, specifically in regards to individuals with ASD. It explains some of the challenges associated with ASD and how to work with them to make the worship experience better.

One of the strategies was writing "stories" describing activities and social expectations for different parts of church. It talked about how this might be a help for more than just the people with ASD and I agree. It reminded me of the "bozo buttons" line in the Yada Yada book. About how we often speak in a language that others don't understand and assume that everyone automatically knows how to behave in the church environment. This is not always the case. For example, I have grown up in the church all my life and I have been in many different denominations, and experienced communion in many different ways. And yet we recently had communion in the church I go to Bible Study at and we were al (my whole family of church going Christians) l thrown for a loop. We didn't know the procedure at this particular church as it was different than any we had experienced. It would have been nice to have it explained to us first. I ended up not taking communion because it just didn't feel right. There are so many instances where visitors feel out of place because they don't know what is expected and these "stories" would be so helpful.

Anyway, it was a good resource book and it had a list of other resources in the back that would be useful. I hope to pass it on to someone in the church and hope that they will pray about implementing some of the ideas. We have so many kids with Autism at our church that they need to realize that we need to do something. It may not be their vision to be a church reaching out to special needs, but it needs to be because that is what is going on.

Oh, just as an aside. One of the first things the author commented on was church signs that said "Everyone Welcome". Her goal is to make sure that is really true. But, she also said she is convinced that churches have created a new staff position for the job of doing the sign. Nope, I would guess not. At least in my church it is a volunteer position. I should know. LOL!

Louder than Words by Jenny McCarthy

Louder Than Words: A Mother's Journey in Healing Autism

I made the mistake of starting this book in public! Watching the girls practice their Christmas show with their World Changer friends. I had to put the book down before I started crying in front of them! The first part is heart wrenching. I do highly recommend this book to everyone. Those with ASD kids and those without. Just take a box of tissue, be prepared for some bad language and realize she isn't a Christian. I would have rather she didn't include the language and I didn't agree with all her beliefs and the tarot card thing, though spooky cool in a way, was not my favorite part of the book.

Beyond that, she is a great voice for ASD. I hope that her voice is heard and it brings some attention to ASD and treatments that work! The book is short and easy to read (well, other than the language and the heart wrenching stuff!). I hope that it helps those with an ASD child to relate and to maybe find some support and answers. For those that don't, maybe it will help them be just a little bit more understanding of what those of us who do go through.

Jenny tells the story of how she came to find that her son had Autism, how she fought like crazy to get him help and their journey to healing. Her journey is different than mine, her son was much more severely autistic and we, thankfully, never had to deal with seizures, but I could relate. She is candid about the struggles and how hard it is. But, I know that this book only scratches the surface of how incredibly hard the struggle was for them. Especially with the new treatments and the detox and die-off and withdrawal symptoms. She mentions it, but not in great detail.

Some quotes I want to share:

"When your child is diagnosed with cancer, neighbors stop by your home bringing precooked meals, hugs, and support. When your child is diagnosed with autism, families who see you in the supermarket will slip away down another aisle." -David Feinberg

"Figure out the cause for all your kid's issues, and don't settle for the doctor's Band-Aid. " and
"...don't give up hope, and remember that acceptance of your child's condition does not mean giving up..."

Amen. She talks about how it's our job to find out why our kids are having problems and how we can fix the problems. That behavioral issues in ASD children are often caused by major health issues and pain! She does say that not all treatments will help all kids. She never claims to have all the answers. But that we need to advocate for our children and be willing to never give up.

I also SO related to the part about finally telling her son to be quiet for 5 minutes! I remember that. I remember needing to tell my now verbal child to be quiet and yet feeling bad because it hadn't been that long ago that she hadn't been able to talk. I also remember the ST saying it was not her job to get her to be quiet, it was her job to get her to talk. LOL

She also goes into the huge cost of autism treatment, and the lack of funds. How the rate of autism is growing so much and yet the funds are not there, compared to other diseases with lower rates. The medical community needs to wake up.
The back of the book has some great resources. She calls it her "I am sorry your child has Autism, here's what to do now." pamphlet. The one no one handed her. There are some sites that I didn't know about and have now bookmarked. Some great resources.

I was expecting more of a technical book. I guess something like Children with Starving Brains. Something to help guide me through our new journey of biomedicine. That is not what this book was. Thought it did direct me to some things that might do that and I think I may need to reread the Starving Brains book. It is a story of a mom who has walked the path of having an autistic child and who's desire is to help us find our way toward pulling our kids through the "window" and out of their autistic world.

ETA: I read somewhere (either this book, the Oprah site or Amazon) that someone suggested that Evan was not really Autistic since he was able to be healed. Well gee, maybe we should see how many other kids "don't really have Autism" and try to heal them too. (Can you see my eyes rolling?) Labels don't matter, kids do. If we can heal a kid, why not try?

allergen free living

Today began our journey into allergy free eating. It's a process, let me tell you. I think I said yesterday that reality hadn't sunk in for Jessica yet. Well, the truth is, it hadn't really sunk in for me either. While I have read all the books and felt prepared to begin this journey, I wasn't thinking of the dread that alternated with hopefulness as I would read the books. It's hard. Granted, I know we are hugely blessed in that there are tons of allergy free foods available now, but it's still not easy. We also had to make some decisions. According to the test she had done yesterday, she is sensitive to sugar, baking soda and baking powder, on top of all the other stuff. Um, yeah. No gluten and no leavening? Perpetual Passover? We think not. (Ok she can have yeast and eggs, but still!) We decided to go for the big things, Gluten, MSG, chocolate (do I hear gasps!?) and do the best we can with other stuff. She has to eat!

We hit the health food store today and stocked up on GF mixes, pizzas, cereal, etc. We are trying to find things for our carb loading food sneaker to eat when she gets hungry. I bought a plastic box and stashed her rice cakes and GF pretzels and such in it and declared it off limits to the rest of the family (well except for those pretzels, which we were buying before as they are FG safe!). Showed her which cereals she could eat, etc.

Still, supper time came around and I thought, hmm, what on earth are we going to eat? Phew, I remembered the big stash of rice pasta in the pantry! There's an easy meal. We had a zesty pasta sauce to give it more flavor. Thank goodness for a food coop with several GF families in it. There are always good GF items on opens and I have been buying them in an effort to reduce our gluten intake and to try things out in anticipation of the shoe we knew would eventually drop.

We are now contemplating the "passover kitchen" as dh put it. Figuring how to cook her food contaminant free. I think we need to buy her her own toaster oven. We now use the oven and the toaster for our stuff, never had a toaster oven. But I figure we could cook GF chicken nuggets and pizzas and rice bread toast in one and keep her clean. Pots and pans will be safe, if washed,as far as I can tell. The biggest thing that has always stumped me is the mill. There is no possible way to make that GF! And it would be cheaper if I could grind her grains too. Dh brought up a second mill. But, yeah right. I had to skimp and save for the first one. But, it is encouraging to hear him even bring it up. I would never have dreamed of asking for a second one.

I bought another plastic box for all her "potions", her food journal, medicine charts, etc. Poor kid is a walking pharmacy. I know how it feels. Actually, I first became interested in pharmacy when I was her age, dealing with headaches and a bunch of meds.

Got the allergy test from the doctor today. Turns out it is more biomedical stuff. Muscle Testing. Which I have heard of, know some people swear by and I am fascinated to get to experiment with. But, it is not the hard science that I was hoping to use to help dh (and myself) accept the allergies. And I have a new book to read, The Food Allergy Cure by Ellen Cutler. It has a section to explain how to use this stuff. Looks like it might explain some of the enzymes and such as well.

Jessica is still doing well with all this. Of course, I have managed to put food in front of her that she likes. For today! The other kids were not to thrilled when I said no to McDonalds as we were running all over doing errands. Fast food will not be Jessica friendly. Nor will weekly bread ministry, or every other Sunday Pasta House lunches. Life is going to change around here!

Me? I don't know how I am doing. I a bit overwhelmed, yet hopeful. It helps, that like the autism diagnosis, I saw it a mile away. I am not being handed a surprise. I have been preparing myself for this journey. But, living it is a different thing. I am just hoping it brings her relief.

Pray for us. Meds are not cheap, food is not cheap, visits to the DAN! doctor are not cheap. Putting food on the table will be an effort at times. Parents are testy as we come to terms with what we do or do not believe about food allergies, biomedicine and non traditional approaches to healing.

My mother in law was excited to hear were taking her to the DAN! doctor. She had listened to the tapes and thought she was good. She didn't seem real excited about the results. I am not sure how much is "oh my, that's not good news" or "hmm, don't know what to think of that strange way of doing things". (To tell the truth, I was shocked she ever thought the DAN! approach might be good. She is a very traditional doctor.)

Dan! appointment

Jessica had her appointment with the DAN! doctor today. We liked her. We spent about half or more of the visit discussing concerns with Jessica, symptoms, things we would like to see improved, etc. Mostly the daily headaches, the stubborn warts, and of course ASD stuff. The doctor was pretty sure she could clear up headaches with looking for allergens and adding nutrients and stuff. She had a biofeedback thing to pinpoint food sensitivities., we will also do some tests to back it up. But for now we have a list of foods to avoid and some that she tested ok with and some she can eat if she takes digestive enzymes. No surprise, Gluten is right out. But, fortunately, casein and milk are fine. GF will be hard, but at least it is not GFCF! She has trouble with yellow corn, but not white corn or popcorn. So, I don't think we are going to be fanatic about corn. She does have sensitivity to MSG. It would be really hard to avoid all corn, MSG, Gluten and artificials! She came home with a bag full of potions. :-) Cod Liver Oil (omegas), probiotics, digestive enzymes, minerals, vitamins (low in copper), folic something or other, etc.

One thing that was a huge blessing is she gave us free advise about Jacob. I have been stressing as his GI tract is still in bad shape and we just didn't feel comfortable with the Miralax anymore. We had read some things that made us concerned about giving it to him anymore. I really wanted to take him to her, but not at $500 to get in the door. So then I was wanting to just ask her opinion. But they always say, don't piggy back other kids' problems on one kid's time. I wasn't comfortable with bringing it up on my own. But, she started asking about our other kids, so I told her about t he encompresis and how we had had him on Miralax but were looking for something else since we took him off it. She was way against Miralax. Didn't like it at all (confirmation we made a good decision there). And she offered us ideas. Some of the stuff Jessica has, he can take and it may help. We are also going to be buying a home food allergy test that we can use on both of them.

There are still some tests we need to get done on Jess eventually, but it will have to wait till we have the money. There is also a listening therapy that she recommended for sensory issues and processing issues. That was pricey, so we will have to figure out a way to pay for that. But that was another thing that both Jessica and Jacob could use if we had it.

I was impressed that the doctor remembered seeing me at the homeschool conference. She asked how we had heard of her and I told her that I saw her there. She said she thought she had seen me before, but she didn't remember my husband. (That's because he didn't go the second day, when I heard her speak.) So, she wasn't just putting on that she remembered me. And I didn't even sit in the front row like we did for the one we both went to. I was in the back of the room.

Jessica is ok so far with all of this. When reality of allergies hits, she may not be. But we went into this telling her that we are looking to cure her headaches, among other things. And she wants that. So, while she is not happy about giving up her bread, she is being cooperative and understanding, this is what it takes to feel better. I am hopeful that her headaches will go away and she can see the benefit of all this. So far, she is only on the enzymes. We add each thing in 5 days apart. She is not thrilled that they are raspberry flavored and requests that we get another flavor next time (if we can), but she took it. Fortunately, companies making nutrients and such for autistic children tend to realize they can't have dyes and such, so as far as I can tell all of her meds are FG safe. Two of them are Kirkman Labs vitamins and I knew they were ok. They are one of the companies I have already looked into, thinking I might just order from on my own.

I found it interesting that she is sensitve to all the things I was sensitive to (and more) when I had my headaches. It is also encouraging that I am not longer sensitive to them. Well, I can have bad days when I am stressed out, and I don't dare make friendship bread (sourdough yeast is bad news!). But for the most part, I eat what I want. Of course, I wasn't gluten sensitive (that we know of).

The doctor asked, at the beginning, what her diagnosis was. I told her the neurologist said either severe social anxiety or ASD but that he leaned toward ASD. She wrote both down, saying she didn't want to label her unnecessarily either way. But the more she listened to us and took notes, she said she was surprised at the social anxiety thing. That she was seeing ASD. Just one more confirmation to our gut belief. I had been concerned, because Jessica is so high functioning that I was afraid she wouldn't think she wasn't really ASD and why were we there? But she didn't react that way at all. And she really wanted to know, what did we want to see happen. What were we concerned about?

She was also great about being willing to work with what we could afford. Putting things on hold, etc.

We may even be able to cure those warts! She said they have helped some people with them. Unfortunately, Jessica's poor toes are so badly scarred, that even if we get rid of the virus, which we really need to do, they are still going to look bad.

She said Jessica's chewing was not indicative of pica but that Jacob's is.

They had a nice set up for the office. They had the business end, with the front desk, waiting area, scale, closet full of pills, etc in one storefront building. Next door, they had an area for the visit. The whole front part was like a living room. It had sofas, and chairs, a box of toys, books, magazines, etc. Off in a corner, with an open doorway, was the doctor's office. The whole area was just for the family being interviewed/examined at the time. Jessica was able to sit in the front part and read her book while we did the interview process and when the doctor needed her, we had her come in, or the doctor went to her. They understand that ASD children are not necessarily going to be able to sit for a 2 hour exam, so the encourage bringing toys, movies, distractions, snacks, etc to keep them occupied.

Anyway, it will be an interesting journey. John is reserved about the whole thing. Not ready to go whole hog allergen avoidance. He still thinks its a crock that Gluten sensitive people can't even have a speck of gluten. He is willing to try this route, but his skeptic side is still waiting to see it before he believes it. And of course that's basically what you have to do. No one cure is going to work for all kids. And it is a bit mind boggling that they can tell what foods you are sensitive to but poking your palm with a computer probe! But, I am thankful to get some ideas to work with and some possible solutions.

A walk down memory lane

I pulled out a bunch of stuff from Jessica's baby days tonight in an attempt to fill out all the forms. Her baby book, her shot records, a book of letters my mom wrote to her, and a binder full of "a day in the life" pages.

When she was a baby, I ran a home daycare and I always filled out "What I did today" sheets for all my kids. What they ate, when I changed them, what they did, etc so their parents would have all that info. So, I started keeping them for Jessica too. This is a very cool record of her life. I also had spread sheets that showed when she slept, ate, etc. I was a detailed record keeper! Unfortunately it only lasted from 3 months to 7 months. :-( I wish I had kept it up, and I wish I had done it for the other kids. It was so fun to go back and read! And it would have been invaluable for filling out her history. It did help. I could fill in when she was introduced to certain foods as every meal was recorded!

The letters were fun to read too. And helpful. I am kind of glad I have to do this little history. It has given me the excuse to pull all these things out.

Unfortunately, detailed record keeping didn't extend to the baby book. I didn't keep it up either. It starts off good, but then I would forget to add stuff.

Next I pull out the videos! I DID take still pictures and videos every month for each of the kids when they were babies. Up until one month before Jacob got his precious Dog Dog. Then bad mommy fell into 3rd child syndrome and stopped taking videos. This was heartbreaking when Dog Dog dissapeared for 9 months and we didn't even have a video record of her!

And somewhere in this house is a binder with reports on her ped visits. That should help too, if I can find it.

Don't I sound so organized? Sigh, I wish I could STAY organized instead of starting out great and then petering out!