Natural Progressions

For the past 5 months, it appears as though our daughter has gone through normal growth and development and stepped into her Asperger's diagnosis. It's been a very unsettling time for me as I wasn't sure whether I was seeing normal growth or regression. This is my reflection on the experience as posted on the blog: Living with Logan.

http://livingwithlogan.blogspot.com/p/special-appearances-blogs-by-invited.html

Natural Progressions

In my world of uncertainty, I like to have things defined and in a box as it makes me feel less helpless, more in control and gives me something predictable. It comes as no surprise then, that I find the progression, or perhaps more accurately, the unfolding, of our daughter’s issues to be perplexing, destabilizing and downright confusing. No matter how much I tell myself and counsel others that, the only thing constant in life is change; that change is good; and change often suggests progress, I still go through PTSD when it happens. I become unraveled, I panic, and I assess and reassess her supplements and comb through my library of books in search of answers.

I wish that I could move away from this autonomic traumatic response, but I suspect that no matter how much I prepare myself for the changes or tell myself that elements of her condition aren’t going to remain static, I will still have this reaction with every stage of development my daughter goes through. Because even though I may intellectually understand her disability and understand how difficult it can be to have a child with a disability, there is still a difference between “knowing” and “seeing” and it’s a big reality check when I see the effects of challenges which have been made manifest. And when I see this happen and witness the toll it takes on her, I find it even more difficult to separate her issues from mine and the waters become even murkier. I’ve been through enough psychotherapy sessions in my 45+ years to understand that “what’s yours is yours and what’s mine is mine” but her struggles bring putting this lesson into practice to a whole new level.

So then, what are my pearls of wisdom? I’m not sure I have any because if I did, I think I wouldn’t go through this every time. However, there are a few things that can help ease the burden:

1. Having a support system in place is vital and I’m not just talking about immediate family. I think it’s important to have people who are not related to the situation because they can offer another viewpoint not seen by those immersed in the drama.
2. I think it’s important to take time for you. In fact, it’s not an option it’s a requirement. The caregiver MUST find a way to take time for him/herself, to step away both physically and emotionally from the situation and find balance.
3. Sometimes we just have to feel what we feel. Having a child with challenges is just plain sad, difficult and frustrating and I don’t know about you but, some days I’m just not going to be the happy person people want me to be. I’m just going to be me going through the crap that is my life and if you truly love me, you’ll accept me for that. You’ll give me a hug, tell me you love me and then give me space.

Progress will happen, the question is, what will you do when it hits?

The Defeat Autism Now! Approach: Finding a DAN! doctor and what to expect

The process of seeing a DAN Doctor (Defeat Autism Now) and recovering your child is a different "medical experience” than any you've likely encountered up to this point.

Biomed: A Novel Concept. Or is it?

To begin with, recovery isn’t about pulling out the prescription pad. While medication can be used as an intermediate step, the biomedical approach is about getting at the root of the problems and healing the whole body. After his son had been diagnosed with autism and watching his wife care diligently for their son, Dr. Bernard Rimland, a Psychologist, debunked the myth of the “refrigerator mother” as a cause of autism in his book “Infantile Autism” (1964) and based on his research, concluded that autism was a biological disorder which if not cured, could at least be ameliorated by biomedical and behavioral therapies [1].

This research included the most current scientific data available on improving the methods of diagnosing, treating, and preventing autism. He founded the Autism Society of America in 1965 and established ARI (Autism Research Institute) in 1967. In 1995, after 30 years of research and data collection, the DAN! Protocol was formally established; carefully selected physicians, researchers and scientists update it annually. Peer-reviewed scientific studies form the backbone of this treatment [2]. ARI/Defeat Autism Now! is dedicated to educating parents and clinicians regarding research, appropriate testing, and safe and effective interventions for autism [3].

For many ASD children, there are multiple body systems and cycles that are either not working at all or working inefficiently; many carry a detrimental bacterial load because of poor diets, illness, poor immune systems, inheritance, antibacterial use and other reasons; and many carry viruses which run at a sub-clinical level meaning the body’s defense systems aren’t strong enough to get rid of them, but the viruses aren’t strong enough to manifest themselves in traditional ways. All of these problems can be complicated by various genetic mutations, and for some children, adverse environmental conditions. To help determine where each child may stand in relation to all of these issues, a series of traditional and “non-traditional” tests are run in the beginning in order to get a baseline. I say “non-traditional” because traditional medicine either does not run most of these tests or their testing methods are not sensitive enough for our children’s particular problems. Our children and their issues tend to fall outside the Mainstream Medicine Box which means their testing and recovery methods are also outside the box – at least for now. But, don’t get me wrong, here. This is not some magic or quack science. The biomedical approach is not “alternative “ medicine; it’s a science-based, molecular-biological approach [4] to healing our children. This is a safe and effective approach and there are many research studies that are consistent with, and/or support, the efficacy of the Defeat Autism Now! (DAN!) concept [5].

The doctors that implement this approach come from varied medical backgrounds and experience. They go through a training program as outlined by ARI (Autism Research Institute), developers of the Defeat Autism Now! autism recovery protocol. They are required to sign a philosophy statement, pay an annual fee and attend at least one seminar every two years. As with any doctor, you should look for a DAN! Doctor that you like and with whom you can work. Ideally, while all doctors are different, parents are integral partners in the recovery of their children. Again, a good working relationship is key. For many people, this means you have to travel to your doctor. Since the appointments are spread out and communication should be available between appointments, this actually works to most people’s advantage.

So how is the DAN! experience different than most medical experiences you’ve probably encountered so far? You are a partner. Most good DANs listen, ask for - and want - your input, and they work with you. Pretty remarkable concept, no? It is through your observations and feedback that the doctor can help guide and adjust your child’s path of recovery. The more you learn about the process and the various steps involved, the better you can problem-solve between appointments, the better prepared you can be when you go to follow up visits and be able to have more meaningful discussions. Keep in mind when trying to find a DAN! Doctor, that just like our own physicians, not all DAN!’s are the same and just like when we try to find a Dr. for ourselves, you need to screen your DAN!. ARI has published a list of questions you can ask your potential doctor to help determine if this is the right person for you and your child: http://autism.com/dan/ques2ask.htm

What to expect on that first visit.

Typically, there is an initial intake, which should take a minimum of an hour (in my opinion). Here, the doctor will ask a comprehensive set of questions and observe your child and maybe do a minor checkup. Based on the Dr’s observations, the papers you submit and your responses, he/she will chart a path of recovery, order tests and set a follow-up visit 2-3 months away.

Though it seems like a long time, during this time you'll have the tests done and implement whatever has been recommended. At the follow up appointment, you'll review test results, report how things are going at home with the changes, and from there the doctor will tweak the path. The next appointment date will vary but can be months away. The exact visitation schedule will vary according to the Doctor’s treatment methods.

Your DAN! should be willing to communicate via e-mail or phone. Some DANs charge for this, some don't. Find out the best way to communicate with your DAN! in-between appointments. Also, keep in mind that your DAN! is NOT your child's pediatrician so you should continue to use your pediatrician when typical childhood illnesses arise; however, it may be helpful to talk with your DAN! before giving any medication that your pediatrician has prescribed.

As I mentioned before, you are a partner in this and your DAN! should welcome conversation, input and take into consideration any recommendations from you. (At least...this is what I think an effective DAN! does). It's hard to not be intimidated by a white coat, but you really are a valuable ally here and the more you learn about this process, the more effective you can be at your meetings. If getting into the nitty-gritty of the protocol is not your thing, that's okay, too. You wouldn't be alone in that feeling and your child can still benefit.

Intake Evaluation

(A) Bring:

1. Any and all records:
   Hospital birth records
   Notable doctor visits
   Immunization records
   All reports from outside assessments
   Recent bloodwork

(B) Make a mental note or jot down:

1. General health of yourself, spouse and immediate family, noting:
   Allergies
   Intolerances
   Diseases
   Autoimmune disorders
   Other notable health issues

1. Any notable life-changing events that might have directly or indirectly impacted your child:
   Death
   Divorce
   Catastrophe
   Adoption
   Other trauma

1. Any notable events during pregnancy:
   Exposures to illness or toxins
   Immunizations
   Diabetes
   Complications

1. Any notable events during childbirth:
   C-section
   Drugs
   Breach
   Premature
   Induction
   Immunizations administered before discharge

1. Any paperwork from hospital discharge from delivery.

1. Basic outline of stages and ages of development.

1. Any notable developmental issues:
   Delays
   Colic
   Abnormal responses

1. General status of health during development:
   Always sick
   Always well
   Antibiotic history
   Other medication history

1. When you started food and how that went.

1. Any treatment in which your child is currently engaged and how that is going.

1. Child's general status now

1. List of your child's positive attributes

1. List of your child’s issues you want to resolve.

(C) A list of questions for the Dr.
(D) A pad and pencil!

As for tests...well, that really depends on the type of doctor and the intake evaluation but can include:
* OAT (Organic Acid Test): What this test actually consists of depends on the lab. A full OAT tests for
yeast and bacterial metabolites, metabolic functioning, various deficiencies, etc. This is one
example: http://www.greatplainslaboratory.com/home/eng/full_oat.asp
* Peptides: Measures the wheat and milk proteins in urine.
* Hair Test: The results of this test may indicate a heavy metal burden. (Depending on the lab, it is the
arrangement and relationship of this data to each other that indicates potential problems, it is not
necessarily a direct measurement.)
* Stool analysis: Measures microbiology as well as digestion, absorption, inflammation, immunology
etc.
* Urinary Porphyrins: Measures the effects of metals on the body.
* Blood work: Which tests are selected is based on the intake but may contain certain genetic anomalies,
vitamin/mineral levels, amino acid levels, various Immunoglobulin levels, thyroid, vitamin levels, etc.

So...your head should be spinning at this point. There's a lot to take in. Make sure you understand
A: What the Dr. is recommending,
B: Why the Dr. is recommending it (what it’s supposed to do or how it’s supposed to help),
C: How to implement what the Dr. is recommending.

Do not be afraid to speak up. Ask questions and don’t be afraid to ask the Doctor to slow down. Perhaps most importantly…TAKE NOTES!

Conclusion

Biomed is not a sprint for the finish line, but a slow and steady pace forward; a journey made of many tiny steps forward…and a few steps backward. It’s a little like the peeling of an onion; little by little, layer by layer, we unravel our children’s complex story and with each success and failure we put a piece of the puzzle into place and begin to put together a picture of their unique composition.

More Information:
http://www.autism.com/index.asp
http://www.autism.com/medical/index.htm
http://www.autism.com/dan/ques2ask.htm Questions for the DAN!
http://www.autism.com/treatable/adams_biomed_summary.pdf “Summary of Biomedical Treatments for Autism” Good summary of the whole picture
http://www.autism.com/danwebcast/presentations/Boston2005--Underwood.pdf: DAN! Protocol presentation
http://www.autism.com/treatable/index.htm List of various biomedical treatments
http://autism.com/medical/research/biomedical/biomedical_onepage.htm Research documenting biomedical problems in Autism
http://www.autism.com/treatable/form34qr.htm parent effectiveness ratings of biomed treatments
http://puterakembara.org/rm/Dr_Jepson.pdf UNDERSTANDING AUTISM: The Physiological Basis and Biomedical Intervention Options of Autism Spectrum Disorders
http://www.autism.com/dan/cluesforparent.htm Clues for Parents Considering the DAN approach

Reading & Resource:
“Changing the Course of Autism: A Scientific Approach for Parents and Physicians” by Dr. Bryan Jepson with Jane Johnson
“Healing the Childhood Epidemics:Autism, ADHD, Asthma, and Allergies” by Dr. Kenneth Bock
“Children With Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder” by Dr Jaquelyn McCandless
“Biological Treatments of Autism and PDD” by Dr William Shaw
“Autism: Effective Biomedical Treatments (Have we done everything we can for this child?)” by Jon Pangborn and Sidney Baker.


Stories of Hope and Recovery:
http://www.autism.com/treatable/recovered/recovered.htm


- Footnotes -
[1]Venables, S., The Independent London, (28 November, 2006). “Bernard Rimland: Psychologist researcher into autism who overturned the theory that it was a reaction to bad parenting.” Downloaded 20 December, 2009 from Autism Research Institute http://www.autism.com/ari/rimland/rimlandlondon.htm

[2] Scientific Foundations of a Defeat Autism Now! Protocol: http://www.autism.com/dan/scientificfoundations.htm
Research Documenting Biomedical Problems in Autism – Feb 2009: http://autism.com/medical/research/biomedical/biomedical_onepage.htm

[3] Defeat Autism Now!—A Project of the Autism Research Institute. http://www.autism.com/dan/index.htm

[4] “Why do I pursue medical treatment for my child’s autism?” http://www.autism.com/medical/autism_medical.pdf

[5] Scientific Foundations of a Defeat Autism Now! Protocol: http://www.autism.com/dan/scientificfoundations.htm

Roasted Chicken & Veggies

This is my new, favorite comfort food. It's quick, easy, one-dish and I get to eat all sorts of different veggies at one meal. Plus...roasting brings out the sweet qualities in a vegetable, something that has not been lost on either my daughter or husband. I do keep the skin on my chicken, so...this isn't a low-fat dish*. I also use chicken thighs as they are generally cheaper and a moister meat.

INGREDIENTS:

Chicken pieces: Thighs, legs, breasts or any combination, though they will cook more evenly if you use the same body part.

Any combination of vegetables. For the picture above I used:

- sweet potato - cubed

- purple cauliflower

- fennel bulb - chopped

- yellow zuccini - chopped

- green bell pepper - chopped

Lemon juice

Olive Oil

Salt & Pepper

Garlic powder

Onion powder

I use a clay baking pan, but any pyrex baking dish will do. Be sure to oil the pyrex dish first.

Lay chicken bottom-side up on the pan and squeeze about a quarter of a lemon on top of it. Season liberally with freshly ground salt and pepper, onion powder and garlic powder. Turn over and repeat with lemon and seasoning.

I don't measure my veggies. I cut and spread on the pan until I have a nice mix of colors. Then drizzle them with oil and season with salt and pepper. Sometimes I'll add lemon juice. Once you figure out how many veggies you'll be using, you could put them in a separate bowl, drizzle with oil, add lemon juice, a couple cloves of minced fresh garlic (Mmmm...much better than powder), salt and pepper, then add to the chicken.

Bake at 400-degrees for about 15-20 minutes, stir up veggies and continue baking for another 15 or so minutes. Check the chicken and veggies at this point. You'll probably need to cook for an additional 10 minutes depending on the size of the chicken part.

* NOTE: You could remove the skin before baking. Prepare as directed above but instead of coating the top with the seasoning, make a topping of bread crumbs or almond meal:

- allow about 2T per piece of chicken,

- drizzle enough oil to moisten and

- add liberal amounts of seasonings - maybe about 1/8 teaspoon per piece of meat.

Drizzle chicken with lemon juice, then spread about 2-tablespoons of the breading on top of the chicken. Bake as directed.

Bean Dip

Perfect as a dip with legal chips, as a spread for quesadillas, sandwiches, pizza...you name it. Use your imagination!!


1-15.5 oz can black beans - reserve 1/4 cup liquid, then drain and rinse.
1 clove garlic, chopped - Use more or less to taste.
Juice from 1/2 lime - Use more or less to taste.
1/2 teaspoon onion powder, or chopped fresh onion
1/2 teastpoon cumin
10-grinds of salt (...Like how scientific this is?!)
Pinch of cayenne pepper
(Optional) 5-drops agave nectar
2 Tablespoons finely chopped red bell pepper
2 Tablespoons chopped fresh cilantro


Puree a few beans, 1/2 the liquid and garlic until pretty well blended. Add the fresh onion at this point if you're using that instead of onion powder.

Add the rest of the liquid and lime juice through agave nectar. Puree until smooth. Adjust seasonings if needed.

Stir in bell pepper and cilantro.


** OPTIONS:
* Add a small jar of baby pureed beef, chicken or lamb to boost protein and add a little flavor twist.

* Make this more italian flavored by substituting:
- White beans (like Canneloni) for the black beans
- Italian seasoning for the cumin
- Fresh basil for the fresh cilantro
- a few bits of tomato or tomato juice for the lime juice
- a little extra garlic
- 1/4 cup sauteed onions for onion powder

"Pizza" Redefined

Rice Crust or any legal pizza crust, packaged or homemade

Black Bean Dip*

Finely minced chicken, turkey or beef

Legal cheese like Galaxy Brand Rice Cheese

Dried basil

Follow directions on package to prep the pizza crust.

Spread a nice cover of bean dip.

Sprinkle minced meat on top. I like to sprinkle a little salt and garlic powder on top of this.

Top with legal cheese. Cut in strips, triangles or use little cookie cutters for fun shapes. My daughter LOVES to cut the cheese herself and put it on top.

Sprinkle lightly with dried basil.

Bake according to package directions.

NOTE: Galaxy cheese does not really melt, so pull it from the oven when it looks 'done'. About 7-12 minutes or so.

* If you prefer an italian flavor for the bean dip, substitute italian seasoning for the cumin, basil for the cilantro, and drop the lime. Adjust seasonings to taste.

The Power of Many

I'd reached a point in our diet/biomed journey, that I felt our daughter had finally come to eat certain foods on a regular basis, and that cooking them in bulk and freezing them could finally be a feasible option. Inspired by one of my forum member's rituals, I decided to extend an open invitation for a day-long GFCF Cook Fest.

It took a lot of e-mails to figure out the details, but the two other participants, Tori and Heather, each drove an hour, hauled raw ingredients, prepared foods and coolers to my house and thus we began our first endeavor. We got to sample Heather's hummus and watch her make meatballs, Tori graced us with lentil soup and a sumptuous Sunday Chicken dinner, and I made pumpkin protein cookies and quesadillas.

But it was more than just making and sharing food. Here, we were able to come together and talk about our children. Try new foods and bring new foods home. Show each other new tips and tricks and generally learn how to make life easier in the GFCF kitchen. I wish I had taken a picture of all the food we made, because I know I've left something out. The following day, since my kitchen was still a wreck and appliances still out, I was able to make additional foods and freeze them.

Though it's been hard to get everyone back together again, I have held another cook-fest, and in this one, there wasn't a lot of mass coooking done, but there was a lot of education for the new people.

The camaraderie during this mundane chore made it completely bearable...and I LOVE having a stocked freezer!

CF Coleslaw

CF Coleslaw

1 part red cabbage
1/3 part carrots
1/8 part leeks, white part and some of the green

Shred cabbage and carrots.
Slice leeks in half, rinse well. Lay flat, then thinly slice across width.

Mix well


DRESSING:
equal parts lime juice and oil
fresh garlic – one med-large clove per lime
S&P
¼ t cumin per lime, just a hint of red pepper


Make dressing and pour on top of colelaw. Mix well. Refrigerate.

NOTE: If you use a small head of cabbage you’ll probably need to use 2 limes for the dressing. Also, I have made this with red onion and it was not nearly as good as with the leeks. The red onion overpowered the other flavors.