Free-Mealer

Natural Progressions

2010-10-20T08:02:00.004-04:00

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:

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.
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.
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

2010-03-25T05:40:00.015-04:00

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:

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:

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

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

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

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

Any paperwork from hospital discharge from delivery.

Basic outline of stages and ages of development.

Any notable developmental issues:
Delays
Colic
Abnormal responses

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

When you started food and how that went.

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

Child's general status now

List of your child's positive attributes

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

2009-03-30T08:50:00.004-04:00

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

2009-03-30T08:29:00.004-04:00

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

2009-03-30T08:11:00.006-04:00

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

2008-12-02T10:52:00.005-05:00

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

2008-12-02T10:47:00.004-05:00

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.

Which One Will Get Your Vote??!

2008-08-23T12:49:00.005-04:00

Though the talk of politics does take place in our home, I promise this picture was done without ANY instigation or prompting from my husband or me! She was a little disappointed to learn she was not old enough to go to the polls. When asked who she was going to vote for, her answer was based on who looked better. I will leave her answer up to your imagination...

Just goes to show not much is missed...biomed is clearly working better than I thought!

"Miracle" Recovery?

2008-07-25T06:34:00.004-04:00

Miracle would suggest that a wand had been waved and that with a smattering of fairy dust, all was better. All the pain and angst erased from memory, nary a stumble or hesitation from this point forth, that the path ahead was clear and easy. Hmmm…a magical feat indeed! Perhaps in the dark recesses of my being there is a little voice wishing with all her might that this could be so. Yet, I can tell you that the only supernatural event occurring in our house is our dogged determination to get to the bottom of our daughter’s underlying mystery.

That a solution to this puzzle even exists, I am immeasurably grateful, but the way is murky. Twists, turns and backward steps are constant companions. Self-doubt, worry, frustration and the ever-present weariness hang on me like burrs on my socks, pricking and making their presence known at every move. I have given up my former life to find our daughter and bring her back. And although sometimes I miss whatever it was I used to do, I am propelled forward by the changes and improvements she has made.

Yes, I am perhaps more jaded in the way I look at life, but perhaps that is to be expected. When the blinders of naivete are peeled away by the sting of reality, it’s hard to prevent the skeptic’s shell from forming. I no longer have implicit faith. In contrast, I also know that even though I encounter periods of insecurity, I am more confident in myself, and my abilities. I know that somewhere in here, I have found my voice and with each event it becomes a little stronger.

And although there is no magical pill for autism, there is hope. That with hard work and dedication, I, like hundreds of other parents, am putting the pieces of our daughter’s puzzle together. Through the shadows we are touching the hidden lives of our children and slowly drawing them forward into the light, and for the first time, getting to know who our children really are.

That, my friends, is the ‘miracle’ of intervention.

There Are Days

2008-07-10T19:21:00.004-04:00

Journal entry dated 25 April, 2007. It had been nearly a year since our daughter was diagnosed, and she had been on the DAN! Protocol for about 3½ months.

“While my life is not nearly as wacky and difficult as depicted in some stories about autism, there are days.

There are days when it seems like no one "gets it".

Like, trying to convince her Pediatrician that she really does have a problem and I am not an overly neurotic mother creating problems where there are none. That her screaming and panic at the sound of a vacuum is NOT an attempt to get my attention and that her self-limited diet is not because I haven’t offered her a dozen other foods a bazillion times.

Or, like trying to convince the County that she really does have processing issues. That she doesn't get it if I say, "Get dressed." but she understands when I say "Put your clothes on." That if you get her going on her own topic, she’s fine, but try to teach her something, and sometimes you just get a blank stare, drifting or screeching. And if you listen carefully, the tenses, pronouns and words are just plain wrong and out of order.

And, feeling like I have to always explain her behavior to well-meaning friends and neighbors. That she can’t just come over and play because I still have to ‘trail along on the sidelines.’ That her manic running around is just that. Manic. This is not an excited child running around playing WITH other children, she’s totally out of control and if I don’t keep a lid on it, she’ll give you quite a show when it’s time to leave."

[But, it wasn’t just about others not getting it…it was also about me, and the never-ending questioning, second-guessing and guilt that was my constant companion.]

"Not really knowing whether having friends is something she wants, likes, needs, misses or doesn’t care about.

Further isolating myself by bucking the overwhelming pressure to enroll my child in extra-curricular activities.

That having autism spectrum disorder: Pervasive Developmental Disorder/Aspergers, Anxiety, ADHD, Receptive/Expressive Language Disorder and Sensory Integration Disorder, doesn’t mean she isn’t cute, adorable, pretty or smart.

That even though I’m grateful my child is high functioning, I am still disappointed.

That no matter how much I confront the sadness and discomfort, and feel like I’m handling it and dealing with it, I am sidelined by an innocent event, observation or comment and feel like I have to grieve it all over again.

The guilt over knowing that if I’d done something sooner, we’d be that much further ahead.

Now that she is diagnosed gluten and casein intolerant, the needs of a special diet have added to the strain. It isn’t just as simple as going out when I’m tired and don’t want to cook. I still have to prep her meal.”

As I mentioned, by this date, she had been about 3 1/2 months into biomedical. It was frought with ups and downs and I was trying so hard to understand our ‘new’ child. So much information was coming at me all at once and I had no idea how I was going to keep track of it all and worse, I was very afraid I was going to make a mistake. I remember staying up until the early morning hours researching, trying to make sense of it all. I got over that hump, like I’ve gotten over many ‘humps’ after that.

Biomedical has given us our daughter back, but it has come at a price. A price certainly in monetary terms, as well as costly both physically and emotionally for me. As I like to say: “The apple hasn’t fallen far from the tree.” Meaning, like many parents of these children, I too suffer from body imbalance. And like many of the caretakers of these children, my health has taken a hit for the burden is great and I, too, have benefited from a variant of the DAN! protocol.

But health isn’t the only thing that takes a hit. Relationships do too. Whether married or partnered, the relationship is a dance. Adding a child, and special-needs one at that, takes things to a whole different dimension. If the relationship is on unsettled ground to begin with, there is little foundation to see it through when the demands of a special needs child comes barreling in. Add to that the differences of opinion when it comes to treatment, and it becomes a lighted fuse. Divorce rates are high in families with special-needs children and I’m not surprised. It requires both parents to be adults and shoulder responsibility. There is no place for blame, ignorance, childish behavior, selfishness, denial or rationalization. My husband and I have had our moments, but we each bring something to the table in her recovery and I think we’d both agree that we’re grateful we have the other person to do this with.

And, I was angry. Angry that I let the pediatrician talk me out of my concerns; that I let him make me feel like a fool; that I didn’t do something sooner. Angry that it was so hard to raise her, and I resented it being so hard, and I was angry and guilty for feeling that way and that I couldn’t just ‘get over it.’ Angry that I’d heard whisperings about the immunizations but never bothered to educate myself. …That the only way out was forward.

But here we are; and here I am, now, 18 months later: No more night wakings nightmares or night terrors. She’s potty trained, eats a balanced and varied diet, is conversant, writing, reading above grade level, loving, interacting, learning about feelings and empathy, curious and asking questions, and she’s being mainstreamed. Bit by bit I can see the real person emerge. Wow. What a remarkable and hard-won journey.

Our Meal Calendar

2008-06-15T10:37:00.004-04:00

It’s time to work on the meal calendar again. This weekly/monthly calendar is a great concept except for when I go out to the store on Sunday, stock up on food, then don’t follow the calendar. That usually means I forget there’s meat in the drawer and it goes bad. I hate waste. Especially organic meat waste.

So, the calendar’s a great idea. It’s something I work towards, but, I’m also tired at the end of the day and making yet another meal is sometimes just not in my cards. Certainly for a working Mom, this calendar is ambitious. I print the week out and sometimes I follow the days, sometimes I jump around. Sometimes it's evident that all I really did was waste ink and paper.

And speaking of waste, here’s what else I’ve noticed: That often leftovers get stacked up at the end of the week. I’ve also noticed that I’m eating more seafood than I used to, but I’m also eating more meat.

So, here’s what I think:

Modify the meals on the list according to what’s happening that week.

Freeze the meat for the Thu-Sat meals. Make a note to pull them out on Wed.

Watch the quantities and adjust down if needed.

Freeze the leftovers.

Eat the leftovers for lunch.

Have a “Week in Review” meal. (This is what my ex-brother-in-law used to call my Mother’s leftover night! I think that’s very funny!)

Add more vegetarian meals.

Life is about balance. The meal calendar is great, but way too hard for me to follow religiously, though I have found it extremely helpful in figuring out my daughter’s meals.

Click here to see the calendar. (Click the back arrow at the top of the calendar page to get back to the blog.)

THE mB12 SHOT: Our Experience and Some Handy Tips...

2008-06-14T20:43:00.002-04:00

I could handle the various supplements: liquids and pills. What I wasn’t prepared for was the injection the Doctor prescribed. “You’ve got to be kidding!” I said to myself. Instantly I flashed back to a time in my early 20’s when our beloved, elderly black lab was in decline and needed injections for something-or-other. But this wasn’t a dog whose scruff I could grasp and jab with a needle. The doctor must have seen my wan face. ‘Just practice on an orange.’ He suggested. Nice idea, I thought, but her cute little, pink, diaper-clad butt was nowhere close to the same as a tough-skinned, nerve-lacking orange! I chose not to practice on that orange, though why, I don’t remember. Perhaps it’s because my motto’s generally: “Why do it the easy way when I can do it the hard way”.

No one likes the feel of a shot and I likened giving one to my ‘sensory’ child to putting my hand on hot coals. Not really something I’d enjoy doing. I looked into the Emla cream, a skin-numbing cream commonly used among our set, but was not going to pay $65.00 dollars a tube for it! Yikes! She was going to have to learn how to tough it out. Life is hard and there was no time like the present.

During the getting-ready-for-bed routine I announced she was going to get a shot, and I used the same sort of sing-song voice one would use when offering an ice-cream cone. Not really understanding what I meant by 'shot', she was very compliant and lay on her tummy. Since I was already using a breathing techique when she got panicky, I employed the same technique here. Breath in for 1&2 then out for 3&4 and we did it together while I got the needle at the correct angle, ready to inject. When she (and I) was calm and ready, which was about 4-5 breaths, I told her 'on the next number three' and as she began to breathe out, I injected, sure and swift. Then dabbed with the alcohol swab, put a funky bandaid on, and gave her a hug and praise. Simple. Right?

…I guarantee you there was way more moisture on my brow than there was in her eye.

She was uncomplaining until the third or fourth injection a couple of weeks later. At that point she was beginning to understand this was not only hurting, it wasn’t going away! As this was not an optional treatment, I let her take what "control" she could. She could choose floor or bed to lie on. I let her pick into which 'cheek' she wanted the shot and I let her tear the cover off her bandaid. Perhaps most importantly, I let her give a pretend injection to one of her stuffed animals using her recapped needle. Now, some might gasp at that, but, instead, I took the opportunity to talk about the needle, showed her how it worked, (she's a gear-head), needle safety and the rules of her syringe: This was the ONLY time she could do this with her animal. NO OTHER. PERIOD. (I do dispose of them properly.)

She mimicked everything we did, rubbing the bottom, breathing, "placing" the bandaid, and giving the bear a hug. She did that for about 3-4 weeks, and now no longer needs to do it. Also at the time, I told her that the boy she had met several months prior, who was her age, was diabetic and that he had to have shots lots of times a day. She was very impressed by this and really didn't complain much after that. She used to ask if it was "shot night"...which might have been her anxiety talking, but she rarely whines about it now. She's a good sport and I let her know how brave she is every time we do it.

It took us 3 weeks to see the full impact of this supplement. Improvements included: better compliance, better language, eliminated night wakings, night mares and night terrors. As I had started pulling gluten and casein around the same time, I wasn’t sure exactly what benefits we were seeing from the mB12, so a few months later we stopped them. Within three weeks her night wakings were back, she was less compliant and she just didn’t ‘have it together’.

The first few were hard for me but the more I did, the more confident I became. Some quick tips. (This is by no-means comprehensive.):

Shots are injected at the subcutaneous level. Fat allows for slow release absorption. When injected into the muscle, some positive response from mB12 will be present, but the long-term benefits will not take place leading the parent to think the shot is not working.
Inject at about a 10-30 degree angle.
When injected into the buttocks, once every three days is generally adequate.
Some people let it get up to room temperature before injection. Remember that it should not be exposed to direct light.
Do not hesitate when inserting the needle. Sure & swift is the most kind.
Some apply Emla cream or other anesthetic cream and do the injection while their child is distracted or asleep. Different creams have different effect times. Wait for the cream to take effect before injecting. To know how your cream works, apply the cream to the inside of your child’s thigh, then use a pin to determine how long it takes to work and how long before it wears off. This is your window of shot-administration time.
Morning is recommended as the best time to administer. We started in the evening and had no problem. However, until you know whether the shot increases hyperactivity, you might want to start in the morning.
Some children become more hyperactive after the addition of mB12. This may be a temporary side effect or it may indicate the need for additional Folic Acid/Folinic Acid/Folapro. Folic Acid helps with the absorption of B-vitamins.
Continuing hyperactivity may also indicate yeast overgrowth, as B-vitamins tend to increase yeast.
If a red ‘blister’ develops at the shot site it is usually an indicator that the angle of injection was too shallow.
Injections can be done in the belly, arm or leg fat, however because of the high fat content, best results are obtained when the injection is done in the bottocks.
Red/pink urine shortly after injection indicates that you have injected into the muscle.
Typical response time is many hours to days. If you have a rapid response after injection, a few minutes to a couple of hours, you’ve injected into muscle.

This really is a must-read if you are doing, or thinking about doing, the mB12 shots:
http://www.drneubrander.com/Files/READ%20ME,%20Injection%20Instructions%20for%20Methyl-B12%20Shots.pdf

You can see videos about giving the shots: http://www.drneubrander.com/dev/index.html

Roasted or Grilled Vegetables

2008-06-12T20:02:00.003-04:00

Mix and match the following:

· red, yellow, green, purple bell pepper – cut in 1-inch pieces or half-inch strips

· yellow or red onions, but Vidalia (sweet) onions are the best – cut in ¼-inch rounds or quarter/eighth the onion – depends on the size

· cherry tomatos – leave whole

· yellow, zuccini, or patty-pan squash – cut yellow and zuccini in ½ inch strips if the diameter is up to 1 ¼ inches, otherwise split the half-inch slice (the smaller the squash the younger it is and the more flavor it has.) Cut Patty Pans in quarters or if they’re small enough, keep them whole.

· winter squash – cut squash in half, scrape out seeds and cut into 1-inch squares

· fennel – remove fronds and tough outer layer of bulb. Slice or quarter. Save fronds as a licorice-flavored seasoning for other dishes.

· white, blue or sweet potatos – cut into ½-inch squares

· white, green, purple or orange cauliflower – I just use the flower heads broken apart into single stems.

· green or yellow (wax) beans – leave whole

· white or green asparagus – trim the ends and leave whole

· brussel sprouts – cut into halves or quarters lengthwise

· eggplant – cut 1/2–inch slices, then make about 1-inch pieces from those slices.

Oven Roasting:
I cut and put directly onto my clay baking dish. As you add your vegetables, sprinkle them around and add enough of each one to make a nice color balance. Put only enough vegetable in the pan to make one solid layer of veggies.

Drizzle enough oil to nicely coat most of the veggies. I use olive oil.

Be generous in your salt. I use fresh ground sea salt and make sure there’s a reasonable coating. Salt to your taste. Same with pepper. I use fresh ground.

Add thinly sliced garlic. For my pan, which is a little larger than a jelly-roll pan, I’ll add 1½-2 large garlic cloves.

If you want, add the juice of a half lemon.

Bake in 400-degree oven for 30-45 minutes. Stir the vegetables about 2-3 times during cooking. Veggies are done according to whether you like them all soft or al-dente.

Grilling:
I prefer to marinate my grilled veggies.

In a large glass baking dish or two (like Pyrex), add your chopped veggies and 1-2 large garlic cloves, sliced. (Remember to balance your colors!)

Drizzle enough olive oil to nicely coat the vegetables and squeeze the juice of a half lemon per large Pyrex dish. Be generous with your freshly ground salt and pepper.

Stir to mix. Cover and let marinate for at least 30 minutes.

Rub vegetable grill grate with oil. When grill is hot, put grate on upper rack*, add veggies, reduce heat to medium, close top and let cook. I frequently check the veggies and stir them so they will cook evenly. It takes about 30 minutes or so.

Some of my favorite combinations are:
[1] bell peppers, onions, cherry tomatos, yellow, zucchini or patty-pan squash
[2] fennel, white or blue potatos, colored cauliflower
[3] brussel sprouts with lots of thinly sliced garlic squeeze lemon on them after they’re done
[4] asparagus, squeeze lemon on after they’re done
[5] potatos and rosemary – preferably fresh if I’ve got it
[6] winter squash is best done with other varieties of winter squash. Drizzle with oil, salt and sweetener of choice…I like Maple Syrup. If you like fall spices, mix them with a little granulated or beet sugar and sprinkle on top.

Many times I’ll just raid my vegetable bin and throw together whatever’s in there...sometimes it’s great...sometimes not so great!

*I use a gas grill with an upper and lower grilling surface and I use the upper one to grill veggies. If you have a gas grill and only a lower surface, then just reduce the heat a little more and stir more frequently. You may have to keep the top open the whole time. It’s been a while since I’ve used a charcoal grill, so…you’ll appreciate it if I don’t advise you here!

Chick Pea and Rice Burgers

2008-06-12T14:42:00.005-04:00

1+ cup leftover rice or my Roasted Grain Pilaf*
1 can Garbanzo Beans (15-19 oz)
1 garlic clove minced (I use a garlic press)
½ t fennel seeds
2 T tahini**
1 ½ t lemon zest
¼ t salt

Reserve ¼ cup liquid from beans. Rinse beans and drain well.

In medium bowl, combine beans, lemon peel, garlic, fennel seeds, salt, tahini and reserved bean liquid.

With potato masher, coarsly mash bean mixture until well blended but still lumpy. Add rice or grains and continue to mash just until blended. Adjust seasoning.

Shape bean mixture into six 1-inch thick burgers.

Sautee in a frying pan, medium/med-low heat, with a little oil until brown on one side, then flip until brown. About 10 minutes or so.

You can also put these on a very hot grill, cooking 10-12 minutes until brown on both sides…turn once.

I love these with avocado and lemon squeezed on top. It's also really yummy served on a bed of lettuce…didn’t have any for my picture, or sometimes I'll have it as the protein in a salad and use the lemon-based Basic Citrus Vinaigrette. Serve with a legal burger bun with lettuce, sprouts, tomato and mashed avocado instead of mayonnaise.

* If you haven’t already discovered them, Lotus Foods makes a black Forbidden Rice and a Bhutanese Red rice. They are very fun and add interest to an otherwise boring food.

** I don’t usually have tahini but do have sesame seeds on hand. I dry roast the seeds, grind in the mortar and pestle a bit and add.

Jicama-Carrot Slaw

2008-06-12T14:29:00.011-04:00

3 large carrots grated
1/3 large jicama, grated
(This should produce about equal amounts)

½ leek thoroughly cleaned and thinly sliced – (include some of the green) or
2-3 scallions finely chopped
3 tablespoons fresh cilantro chopped

Dressing:
1 batch of my lime-based Basic Citrus Vinaigrette
½ t powdered cumin
dash/whisper of cayenne pepper

Combine all the ingredients in a large bowl and toss to mix. This may take a bit as the jicama likes to stick together.

Pour dressing over the salad and chill or serve at room temp.

Tweak flavors to suit your taste!

Basic Citrus Vinaigrette

2008-06-12T13:33:00.003-04:00

juice of one lemon or lime
oil of your choice, in equal part to the lemon or lime juice - adjust to your taste.
salt & pepper
1 large garlic clove minced. I use a garlic press.

Use a whisk to emulsify or put in a bottle and shake to blend. This should make about a 1/2 - 3/4 cup or so of basic vinaigrette.

Experiment with oils. Nut oils can be delicate and add interest or try infused oils.

This dressing is best when used within a few days, especially if you use fresh herbs. Use on leaf salads, coleslaw or as a marinade for meats and/or vegetables.

The seasoning options are endless. I find that fresh herbs deliver the most flavor. When using fresh herbs, you’ll need about twice as much as dry herbs. Mix and match the herbs or use them alone. Either way you’ll add great flavor.

Blend with very ripe, pureed avocado for a creamy dressing

With a lemon base try:
tarragon: my new fresh favorite…it’s nice and light
parsley
chives
thyme
dill
honey and prepared mustard or ground whole mustard seed. NOTE: let the ground mustard sit in the dressing for at least ½ hour for the flavor to really have impact. A little goes a long way. Start with about 3-4 seeds.
lavender buds
marjoram
italian seasoning
minced onion or onion powder
2T roasted bell peppers*

With a lime base:
cilantro
cumin
roasted cumin seeds
turmeric
cayenne
minced onion or onion powder

* Bell peppers become sweeter when the skin is blackened. To blacken, hold over flame on gas stove, or roast in the oven, skin side up, until skin is black. Put in plastic bag, seal (makes the skin easier to remove). Once cool, remove skin by scraping off with a table knife. Dice or finely chop.

Black Bean and Beef Quesadilla

2008-06-01T16:26:00.005-04:00

INGREDIENTS:
1 can black beans. Reserve +/- 1/4 cup liquid
1/4 teasp. each of: garlic powder, onion powder, cumin, turmeric, salt
1-2.5 oz jar baby pureed beef (I use Gerber brand)
Rice Tortilla shells (I use Food-for-Life brand)
Legal "Cheese" (optional)

Preheat oven to 400-degrees

Place drained beans and spices in food processor. While it's running, slowly add reserved bean liquid until a smooth consistency.

Empty into another bowl and stir in the beef.

On one shell, spread about 2-3 T of the bean mixture. Add 'cheese' if desired, put another tortilla on top.

Put on baking dish. Spray top of tortilla with olive oil, bake about 10 minutes. Turn over and bake until light brown and cripsy - about 10 more minutes.

CF Coleslaw

2008-05-29T14:34:00.006-04:00

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, lay flat, then thinly slice - perpendicular to long cut
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 coleslaw. 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 onion overpowered the other flavors.

Black Beans and Rice Chips

2008-05-25T11:00:00.008-04:00

1 can black beans, drained
2 scallions, chopped
1/3 small sweet red pepper, diced
2 T corn
2 T cilantro finely chopped
hot red pepper (optional)
avocado, diced or sliced (optional)

Mix beans and next 4 ingredients well.

DRESSING
½-3/4 fresh lime juice
equal part olive oil – more or less to taste
1 fresh garlic clove, finely minced
¼ t turmeric
¼ t cumin
salt to taste

In a separate bowl, whisk lime juice, oil and seasonings until emulsified. Pour over beans and mix well. Refrigerate or leave at room temp.

As an hors d’hoeuvre, serve in a bowl, garnish with a sprig of cilantro and dish of rice chips. Could also serve with corn chips.

As a meal, serve on top of brown rice and top with avocado. Serve with rice or corn chips.

RICE CHIPS
rice tortillas
garlic powder
salt
oil

Spray coating of oil onto pan. (I use a clay baking dish.)

Cut rice tortillas into 6 triangles or into strips. Spray generous coating of oil. Coat with garlic powder and salt. Put onto baking pan.

Bake at 400-degrees until lightly brown. About 10 minutes.

BROWN RICE

1 cup long or short grain brown rice, rinsed
2 cups water or broth
1 T oil
salt (optional)

Bring water, oil and salt to a boil. Add rice. Bring to a boil again, reduce heat and simmer for 50 minutes.

For creamier rice, add more water.

Reality, Loss ...and Acceptance?

2008-05-24T11:03:00.004-04:00

Two years ago our daughter was diagnosed with PDD-NOS/Aspergers, SPD, Receptive/Expressive Language Disorder, Anxiety and ADHD. Understandably, I was more relieved at the diagnosis than disappointed. Finally, I had some answers and validation on why she seemed to be so high maintenance on the one hand and oddly docile on the other. I came home from that appointment on fire and ready to pursue whatever means it was going to take to help her.

I did some crying and mourning over what would not be with our daughter, but I chose to put my energy into hours of research on the Internet and reading books. I took her to therapy sessions, I worked with her at home, I observed her in the classroom and worked with her teacher. After all, I couldn’t change what I had been given, but I could try to make the most of what I had.

That rationalization carried me only so far. When I saw her cousin, just 3 months older than her, that Christmas holiday, I was unprepared for how dysfunctional our daughter really was. I was blindsided and my ground was cut out from under me. I wept. I wept for how unable our daughter functioned in the world. I wept for how hard it made my life. I wept at her future and how she’d never marry or have children and I wept at the loss of that for her, but mostly for me. I wept at how embarrassed her actions made me feel and how totally defeated I felt as a mother and how mad I was that I couldn’t rise above it. All of that monumental effort the past six months yielded such miniscule results. Sobbing into my husband’s shoulder, the dam broke.

This moment wasn’t a total surprise. I had been waiting for it. I knew I couldn’t hide behind her therapy sessions, school and the books forever but I didn’t know when it was going to happen. I didn’t know what the trigger would be. I was a little surprised at the intensity, though. I thought that I had been feeling and dealing. What I realized was that no matter how much I prepared myself, there would be times in her development where her shortcomings would hit me and I would have to grieve the loss.

When we adopted the diet and began seeing improvement I was hopeful. Practical, and somewhat pessimistic, person that I am, I was afraid to hope too much. But, we started to see progress. She was adapting better in her classroom, her language was improving, her night-wakings were ending and she was finally sleeping through the night. She was beginning to have a little more conversation. Our daughter was starting to emerge. Finally! Some of that effort was starting to pay off.

Then, six months after we started, something changed. She started stumbling more. Nothing terribly obvious, but, she hadn’t stubbed her toes before and now she was doing it once or twice a day. Then, a couple of days later, right there, while I was sipping my morning coffee at the breakfast table, she changed. She started stimming. I could barely breathe when I saw it. She started drawing wildly active stick figures all over the paper, holding her breath and stimming with her arms; rocking and bouncing. I grabbed the camera and documented this dramatic change. Where did she go? A week later, again I sobbed, this time on the phone to my mother. I didn’t realize how scared I was until I heard the familiar comforting voice.

What I have come to realize, as I mentioned before, is that her development comes in waves - in peaks and valleys. Perhaps all children do this, but I wouldn’t know. I just know that when she shows regression I panic and fall apart. I counsel others that this is a sign of an infraction or a new intolerance; that it’s the beginning of an improvement and should be rejoiced, but I can’t seem to believe it for myself. Maybe one day I’ll get used to it, but probably not. How can one ever get used watching his or her child disappear? I wonder if I’ll ever be able to breathe a sigh of relief and let her go. Does anyone really do that?

Roasted Grain Pilaf Salad

2008-05-20T15:55:00.008-04:00

I made this from my leftover grains. As usual, I didn't measure so tweak my recipe to suit your taste.

Salad:
3-4 cups leftover Roasted Grain Pilaf (See my post)
2 pieces 'legal' sliced ham (I used Applegate Honey Ham) cut into 1/2 inch pieces
2 scallions, chopped
2 Tablespoons fresh parsley, finely chopped
1 stalk celery, chopped
1/3 small red pepper, diced
Fresh avocado, cubed

Chop veggies, add to grains and mix thoroughly.

Dressing:
Juice from 3/4 fresh lemon
Extra Light Olive Oil (I prefer a lighter flavor). Add oil until it's a suitable tartness for you.
1 medium clove fresh garlic, minced
Fresh ground salt and pepper to taste

Whisk ingredients together. Pour over grains and veggies. Mix well.

Top with cubed fresh avocado and serve.

Other ideas: Serve on a bed of lettuce. Replace ham with finely cubed chicken. Add a little bit of finely chopped fresh mint.

Note: It's the fresh ingredients that really add flavor and POP! to this...

Mmmmm....great source of protein!!

Supplements

2008-05-20T15:07:00.004-04:00

Although removing gluten, casein and other intolerant foods make a big difference for autistic/ASD children, many times that’s not enough. One of the gifts of Leaky Gut Syndrome is the body’s inability to properly absorb nutrition from food. Combined with other malfunctions in the body, vitamin and mineral deficiencies start to show up in the form of physical and neurological problems. Our daughter’s supplement regimen includes vitamins, minerals and digestive enzymes three times a day.

Whether it’s her sensory issues, her age or the fact I haven’t taken enough time to teach her, she still does not swallow pills so twice a day I grind anywhere from 6-8 pills, add the contents of capsules and blend the resulting Tablespoon or so of powder with a little Xylitol and enough Agave nectar to make a slurry. There are times when I feel like a sourceress concocting special potions in a little glass bowl; trying to figure out the best way to get these needed supplements into her body. The tangy, bitter flavor is not entirely masked, but she seems to take it with minimal complaint. In our house, the taking of supplements is not optional. For her, absence from these for more than a couple of days leads to a decline in temperament and cognition.

All of her supplements must also be gluten, casein and soy-free. So, what does she take and what does it do for her?

Multi-vitamin

Cod Liver Oil: This is food for the brain and helps with neural connections. Her language and processing speed improved with this.
Vitamin C: Helps support her immune system. Also helps keep her bowels regular.

B6 & Magnesium: A lot of Autistic/ASD children are low in B-Vitamins and many of these children are also diagnosed with ADHD. Our daughter is no exception. B6 and its helper, Magnesium, have been found to act as a natural form of Ritalin for these children. When I first tried this combination, it seemed to do nothing but increase her hyperactivity and give her a good dose of yeast. I even tried it with Folic Acid and Folinic Acid, which is a more broken down form of Folic Acid. (B-Vitamins often need Folic Acid for absorption.) A few tests later and it turns out she has the MTHFR (5,10 Methylenetetrahydrofolate Reductase) mutation.*

Folapro: This is a specially formulated form of Folic Acid for people with the MTHFR mutation. It's a form of Folic Acid that is easy for the body to absorb. With the introduction of this to her B6/Magnesium, we finally started to see improvements in attention.

B12 shot: Yes. You read that right. I also learned how to administer injections. With this we got better language, focus, and behavior. Fortunately, it’s only every 3 days.

L-Lysine: This helps with the immune system. Aids the body in processing/eliminating latent viruses.

Adrenal Cortex Extract: Mercury is quite a disruptor in our body and for our daughter, one of the myriad ways it shows is through adrenal fatigue. This glandular extract helps regulate her body’s ability to deal with stress

Manganese: Her tests showed a mild deficiency in this. I think the effects are less obvious: better bones, glucose tolerance, and stable metabolism.

Digestive Enzymes: Children with leaky guts have poor enzyme production. This helps make sure her food is getting broken down properly which helps keep yeast at bay and can also help some children tolerate previously intolerant foods.

Calcium: With the elimination of dairy comes the elimination of a good source of calcium. Calcium can be obtained through other foods but her diet is not yet varied enough.

Grapefruit Seed Extract: This helps eliminate yeast or at least keep it at bay. In our case, we’re suspecting it’s the latter. She seems to have improved focus and behavior when she’s on this. When we stop it, things seem to have a slow regression until 4-6 or so weeks later we need to pull it out again. So, we’re trying maintenance dosing to see if we can see steady improvement. Considering that B-Vitamins can increase yeast, this might be the right choice for now. I was using Biotin for maintenance, but, not only do I think she needed a higher dose, I was suspecting it to cause tummy aches, so, we’re using this for now.

Some supplements have come and gone and the ones listed above get tweaked every now and then. The addition or subtraction of a supplement is based on behaviors/problems we want to eliminate and/or changes/improvements we want to see. When we first started Biomedical I knew some of what was involved so when we got the list from the DAN!** Doctor outlining the initial supplements, I wasn’t entirely surprised, but, I was a little dismayed. My husband, although game for helping our daughter, was not impressed by the list and was in fact, a little skeptical.

Fortunately, the addition of supplements comes in stages and the improvements keep me going. Our goal is to get her body healed to the point of not requiring these. Through chelation and the use of perhaps another protocol, I believe we’ll get there.

* Though some could dispute the point with me, my simplistic take on this is that this mutation can affect the body’s ability to take up Folic Acid.
**DAN!: Defeat Autism Now! http://www.autism.com/

Inspiration?

2008-05-17T18:03:00.005-04:00

For as wonderful as my kitchen may be, come the end of the day, I need more than just the thought of preparing a healthy meal to inspire me at the stove. Dancing with my daughter to some pick-me-up tunes helps, but I’m not so altruistic as to think that a glass of libation doesn’t help the mundane pass a little faster…or at least make it more interesting. I could go into why a glass of red wine, water or juice might be better for your health, I could even get into the caveats: "Don’t drink and drive." "Drink responsibly." "Don’t drink and draw."

The bottom line for me? Sometimes life just requires alcohol.

(...Did I mention these go well with fire pits??...)

POMEGRANATE MARTINI

1 oz Vodka (Lime flavored is great)

1/2 oz Triple Sec

1/2 oz Pomegranate Liqueur

Splash of Cranberry Juice

Twist (or squeeze) of Lime

Fill shaker with some ice, add alcohol and cranberry juice. Shake. Strain into martini glass, finish with twist, or squeeze, of lime.

..Now get back to the stove!...

THE GF/CF DIET: What, Why & How

2008-05-16T20:53:00.003-04:00

A diagnosis of Autism, Pervasive Development Disorder (PDD) or any of the Autism Spectrum Disorders (ASD) comes with a mixed bag of relief, sorrow and overwhelming research. Doctors, Therapists, Programs, Supplements and Diets, the list seems never ending. And just when you think you’ve had enough, something else crops up: a new behavior, a call from the school or another illness followed by another round of medications.

The GF-CF Diet is an opportunity for relief. Maybe not like ‘going-on-vacation-in-the-Bahamas-by-myself’ relief, but ultimately, a change for the better. Like everything else Autism-related, there is a learning curve and there are no guarantees, but, the greater majority of those who try it for their children, find improvement. Sometimes it’s only a little, sometimes it’s drastic but most would agree that even a little, is better than nothing and every movement forward has to start somewhere.

What is The Diet and why do it?
Gluten and casein are proteins found in wheat and milk respectively. The theory is that the removal of these two ingredients from the diet of Autistic children or children on the Autistism Spectrum, stops the peptides from escaping the gut, which helps begin the process of healing the brain, allows the bowels to begin healing and helps eliminate stress on the immune system. The Gastrointestinal, Neurological, Immune, and Toxicological Systems are the most commonly affected in Autistic/ASD children. Because they are so interconnected, a failure, or assist, in one can affect them all. The diet is just one piece of the solution to the Autism Puzzle.

Children, and adults, on this diet tend to demonstrate improvement in eye-contact, thinking, focus, language acquisition and usage, hearing, cognition, normal bowel movements, greater awareness of their surroundings and a reduction in illnesses. Just how much change and progress you can expect to see in your child is too hard to determine in advance as changes and progress are varied and individual to the child, and only as good as the dietary practice.

What is Gluten & Casein?
ASD children tend to be intolerant - not necessarily allergic - to gluten (wheat) and/or casein (milk). In simple terms, in normal functioning bodies, the peptides of these two items: gliadorphin and casomorphin are derived from, respectively, the wheat and milk proteins and are typically broken down into smaller amino acids during the digestive process and absorbed or eliminated. However, in most Autistic/ASD children, this breaking down into the smaller amino acids does not occur and instead, the peptides leak through tiny perforations in the gut, cross the blood-brain barrier and enter the brain. In peptide form, gluten and casein act as opiates, similar to morphine, in the brain. Thus children often appear to be “in their own world” and seem to not feel pain. Like any addict, Autistic/ASD children who are intolerant to these, tend to self-limit to these foods so they can continue to get their "high". For some, the fixation on the "offending" foods can be obsessive and some will throw tantrums if they don't get it, or until they get it.

What does it have to do with Autism /ASD?
This ability of the gut to "leak" the peptides is called "leaky gut" and exacerbates the symptoms of Autism and ASD and in time helps create a vicious cycle. Children, in their ‘drugged’ state, continue to self-limit, this poor nutrition affects their immune system, which in turn affects their toxicological system, thus setting up the gut for continued membrane permeability and on the cycle goes.

What can the diet do for your child?
Changing to a GF/CF (and often soy-free) diet begins to stem the tide of cascading, systemic failure. By removing the offending foods, the gut can begin to heal. Once the healing starts to take place, foods are better digested and nutrients properly absorbed. This means the body, with the aid of supplements, can begin to replenish its severely depleted store of vitamins and minerals. The brain can begin to function better allowing children to find their language, gain and maintain eye contact, diminish stimming and self-abusive behaviors, to name a few. Because the stress of poor food and nutrition has been replaced, the immune and toxicological systems can now spend their time fending off viruses and eliminating them and other environmental toxins instead of dealing with the inflammation from the offending foods. Much to the relief of parents, a child’s selection of foods generally begins to increase, providing even greater means of better nutrition.

Allergy vs. Intolerance:
Allergy and intolerance are two different conditions. In simplistic terms, an allergy sets off an immune response and responds to an anti-histamine treatment and is generally detected using an IgE blood test. An intolerance also sets off an immune response but manifests itself by making the person feel bad, generally does not respond to anti-histamines and is detected using an IgG blood test. It is important to note that one can be intolerant to wheat, but not have Celiac Disease. Still, it is important to rule out Celiac and it is wise to have the blood test done for it before you remove wheat from the diet.

The odd thing about these intolerances is that the child often desires the very food that makes him or her ill. (The opiate effect.) Most common, is the fact the child will self-limit his/her food choices. Often he/she will not eat anything, or eat very little, outside the offending ingredient; is very insisting for that particular food; will throw tantrums when they do not get the food.

The most common offending ingredients are wheat, milk, soy, corn, eggs, nuts and shellfish, however it is not uncommon for Autistic/ASD children to be intolerant to far more than these.

How do I do the diet?
How attached a child is to a particular food may help you decide whether to ease into the diet or do it all at once. The greater the addiction, the easier it may be to do it all at once. Doing it gradually means the child stays in withdrawal longer and that means his or her behavior can be unmanageable until you completely eliminate it. However, the shock of suddenly going cold turkey may be very difficult for both you and the child. There does not appear to be any particular right or wrong way to do it, rather whichever best suits you and your family.

In general, it is recommended that you start by removing casein as that takes a shorter amount of time to get out of the system. Once the child is totally casein free, improvements should begin to happen within a few days. This is generally enough encouragement for the parent to keep the child on the diet.

So what about the argument that “My child will NEVER go for this!” “All he eats is Mac and Cheese, Chicken Nuggets, [insert any wheat and milk product here]. What will he eat if I take that away?” I guarantee you that not only will your child eventually come around, his/her diet will begin to expand. I have read accounts of parents whose children rebelled and ate nothing for 4 DAYS! Once they worked through the withdrawal, they were eager to eat and did so with little to no complaint.

If you prefer the gradual method, start by serving half milk, half substitute milk and gradually increase the substitute. Alternative ‘milk’ forms are Rice, Almond, Hazlenut, Hemp and Dari-Free which is a potato-based milk. Most of these come in a regular, vanilla, chocolate and/or low-fat version. Watch for the sugar content in these as some are quite high. Beware, too, that some are not gluten-free.

Take one meal at a time and make substitutions. There are lots of mixes and prepared foods available, much to a busy parent’s relief. You’ll soon find that there are substitutions for just about anything your child currently eats. Cheese is still a tough one and veterans of the GF/CF (soy-free) diet bemoan this one ingredient. It helps to think “substitute” rather than “eliminate” when it comes to this diet. It also helps to think “out of the box”.

What about the soy substitution? Many on The Diet choose to keep this ingredient out of their diet. The proteins in soy are very similar to milk and a child who has an intolerance to milk, often has an intolerance to soy. It may be best to start soy-free as well, then when you have been completely casein-free for awhile, try soy and see if there is any reaction. It may be that your child will tolerate it, may only tolerate a little in rotation, or perhaps not at all.

Lastly, think “Rotation”. When going gluten-free, it is common to replace offending grains with rice substitutes. As most of you already know, rice is one of the foods to give when your child has diarrhea so you can imagine how your child might fare if his/her diet is suddenly changed to rice milk, rice noodles, rice cheese, rice snacks, rice bread, rice cereal…need I go on? The best thing for the body is variety so change your ‘milks’, introduce new grains and be on the lookout for adding fiber to the diet.

Things to look for:
Constipation is a frequent complaint for our children however, most have found relief when adopting this diet. Still, as with any dietary change, problems can occur. As I mentioned, be sure to vary your child’s diet so their system can function properly. Fruits, vegetables and added fiber help. So does added flaxseed meal, Vitamin C and Magnesium in the Citrate form. As with anyone, a balanced diet goes a long way towards smooth functioning. The longer your child is on this diet, the greater their ability to tolerate and accept new foods.

The craving/obsession with a particular type of food is generally a sign that your child has found another intolerant ingredient. Try eliminating that ingredient and see if the behavior improves.

Cross-Contamination can create problems for children. This occurs when a food product shares a processing line with another food that contains an intolerant ingredient and the line has not been cleaned properly.

What if there is no change in your child? Is the diet really working? There are a small percentage of children who for whatever reason, do not respond to this diet. However, before you determine your child is one of those, go back through your foods, supplements and environment and make sure everything is ‘clean’. Meaning, make sure you are truly GF/CF. Often the ‘failure’ of the diet is due to a cross-contamination, a hidden ingredient, not understanding how the diet works, cheating (knowingly or unknowingly), an allergy/intolerance you were not aware of, vitamin/mineral deficiency, untreated yeast overgrowth, or a latent virus.

Make sure you understand that ‘gluten-free’ doesn’t mean just removing wheat from the diet, and that ‘casein-free’ is not the same as ‘dairy-free’. Make sure your child isn’t sneaking any offending foods, or being fed offending foods from others and make sure the foods you are giving are ‘clean’ (free of cross-contamination). Also, it is common for other intolerances to appear once the gut is free of gluten and casein. As well, yeast/parasites tends to be a problem for a lot of our children and can often cause regressive symptoms so be sure to rule that out as a cause for no change.

Nutrition/Supplements. One of the greatest concerns about this diet is the removal of common sources of calcium and protein. Be sure your child is being supplemented with all the necessary vitamins and minerals and they are getting enough protein at each meal.

Doctor or no Doctor? It is not the purpose of this essay to say whether you should use one or not. There are probably as many who use one as don’t. Do your research and make a decision based on what’s right for you and your family.

Finding it in the most unusual places!
Casein and gluten is found in many unusual places and forms so be sure to read the list of ingredients and that you understand what the contents of the ingredients are. There are lists out there that can help you determine whether an ingredient is ‘legal’ or not. Most products have a number that you can call and talk to someone about whether or not it is gluten/casein free. Some questions to ask:
* Does it contain gluten and/or casein?
* Does the food share lines that produce foods that contain gluten or casein?
* How do you clean your lines?

Things to watch for at School: art supplies: crayons, markers, playdough, paint, colored pencils, glue, hands-on instructional materials, treats from other kids, trading lunches, food treats from the teachers, stickers, fake tatoos.

Other things to consider at home: lotions, soaps, cleaning products, sunscreen, wipes, medications, supplements.

Restaurants: Cross-contamination can be a big problem here. Though a product may seem GF/CF, it may not really be. For example, a grilled chicken breast seems safe enough, but, what is it’s source? Is it injected with a solution? What’s in that solution? Was the grill clean? Did they use a clean utensil when cooking? For many, it’s just easier to bring your child’s food. Every restaurant we’ve been to since being on the diet has been understanding and accommodating. I just explain that she’s on a restricted diet and have brought her own food.

Permanent or Temporary or Enzymes?
It can be overwhelming in the beginning to think that all this turmoil and upheaval in the routine will be permanent. However, as you and your child adjust to the changes and you begin to learn how your child responds, it will become second nature. As the gut begins to heal, it is very likely your child will be able to tolerate some of the previously offending foods, especially when given enzymes. However, it would be advisable to wait a year before attempting to do so. It takes gluten about that long to completely clear the system.

Enzymes are proteins that aid in breaking down foods. Different enzymes help break down different kinds of food. Often our children are lacking in them, or don’t make enough, and the addition of these help their body efficiently break down the food. Sometimes adding them is enough for a child to not have a reaction to a food.

Some children benefit from chelation, the process of removing the heavy metal burden from the body and from which so many of our children seem to suffer. Once those are removed, the body is able to go back to functioning properly, or as properly as possible, and thus be able to accept new foods and not be quite as dependent on the supplements.

What about Other diets?
For some, being gluten and/or casein-free is not enough and adding the concepts of these diets may be helpful:
* The Feingold Program: (http://www.feingold.org/ )
* The Specific Carbohydrate Diet (http://www.breakingtheviciouscycle.info/)
* The Candida Diet (Yeast-Free) http://www.candidasupport.org/candidadiet.html

Where do I go for help?
There are plenty of resources available. These are just a few that people following the GF/CF diet have found helpful along the way. Most, if not all the books can be found at your library:

Books (In alphabetical order)
“Breaking the Vicious Cycle: Intestinal Health Through Diet” by Elaine Gloria Gottschall
“Changing the Course of Autism: A Scientific Approach for Parents and Physicians” by Dr. Bryan Jepson with Jane Johnson
“Dangerous Grains” by James Braly and Ron Hoggan
“Enzymes for Autism and other Neurological Conditions” by Karen De Felice
“Guide to the GFCF diet for Autism and ADHD" by Luke Jackson
“Healing the Childhood Epidemics:Autism, ADHD, Asthma, and Allergies” by Dr. Kenneth Bock
“Special Diets for Special Kids” I and II, by Lisa Lewis
“The Gluten Free Gourmet by: Bette Hagman
“The Kid-Friendly ADHD & Autism Cookbook” by Pamela Compart, MD
"The Yeast Connection" by William G. Crook, M.D
“Unraveling the Mystery of Autism and PDD" by Karen Seroussi
“What Your Doctor Didn’t Tell You About Vaccines” By Stephanie Cave, MD

Sites (In Alphabetical Order)
Autism Network for Dietary Intervention:
http://www.AutismNDI.com AND http://www.autismndi.com/faq/
Autism Research Institute: http://www.autism.com/
http://www.autism.com/families/diet/leakygut.htm
http://www.autism.com/dan/index.htm#practlist
Dana’s View: http://www.danasview.net/sitemap.htm
General guide for GF/CF foods and products: http://www.gfcfdiet.com/directory.htm#L
Generation Rescue: http://www.generationrescue.org/index.html
http://www.generationrescue.org/biomedical.html
Kids and the Specific Carbohydrate Diet: www.pecanbread.com
Online Forum for parents of GF/CF Kids: http://health.groups.yahoo.com/group/GFCFKids/
Specific Carbohydrate Diet Recipes: www.scdrecipe.com
Talk About Curing Autism Now: www.tacanow.org has a 10 week plan to going gf/cf
http://www.tacanow.org/gfcf-diet/school_supplies.htm
The Gluten-Free/Casein Free Diet: www.gfcfdiet.com

© Copyright 2007 by Anna S. Letaw
For permission to reprint please contact: annaletaw@comcast.net

Getting Out of Your Comfort Zone and Moving On!

2008-05-16T13:24:00.003-04:00

Imagine my surprise and delight when at our latest IEP meeting, we learned that our daughter had progressed to the point that she could leave the special ed school in our district and start attending her regular home school next year! Three years ago I couldn’t picture this. She was such a wreck in the Pre-3 classroom and such a handful in Pre-K that I wasn’t sure how she’d ever manage a ‘real’ school. Once we got over the shock, it didn’t take long to realize it was the right decision for her.

I think for many parents of children with special needs, it’s not only hard to let go it’s hard to know when to let go. We’ve fought for so long to get them what they need that when they finally get it and excel as a result, what then? For many of us, like it or not, our children’s needs have defined us and we are left with the big: “What now?” Most of us don’t experience “The Launch” until they’re 18, but, not for us. We get that gift at a much earlier age.

So…next month I’ll be pulling out my shovel, digging up my roots and transplanting myself. I’ll have plenty of time to get used to the idea, make a pest of myself at her new school and be ready to launch come the last Monday in August!

Roasted Grain Pilaf

2008-05-15T10:46:00.006-04:00

1/4 cup Kasha
1/4 cup Quinoa*
1/2 cup Millet
2-2 1/4 cup broth or water
Salt to taste
1/4 cup slivered Almonds (optional)
1/4 cup dried fruit (optional)

Rinse grains, sautee grains and nuts in pan until lightly brown.

Add broth, salt and dried fruit. Bring to boil. Cover and simmer for about 30 mins.

When done, let grains sit in pan for a few minutes.

For chewier grains add less liquid, for softer grains, add more liquid.

* Quinoa makes the grains more separated, Amaranth will make the grains stay together more.

Makes about 2 cups of grains.

Top: Kasha

Left: Millet

Right: Red Quinoa

Are You Ready??

2008-05-15T09:27:00.000-04:00

I know this has been touched on before, but it bears reminding that one never knows when the caretaker will be out of commission. Not long ago I was tested for Lymphoma. We hadn’t planned on this. I hadn’t been feeling well. I went to the Doctor, which led to another Doctor later that day which landed me in the hospital that night. No going home, no getting meals prepared, no list of supplements or directions for my husband. In the midst of the confusion of me being admitted, vitals being taken and me feeling completely spent after my bone marrow biopsy, there I was trying desperately to remember all of her long list of morning supplements, her dinner menu, her breakfast and her lunch. Cryptically scribbled in haste on a little piece of paper.

Fortunately, he had a basic idea and she is very verbal and relatively functional, but he is NOT a multi-tasker and does not want to make a mistake. Add to that the sudden uncertainty of my health and no outside assistance readily available, it was a wake-up call.

So what are my notes to myself and what can my hindsight offer you?:

A: I keep a calendar of lunches, in rotation for her, on the fridge so I don't have to think so much in the morning, but it's outdated.
NOTE: Update and repost menu.

B: Keep the weekly supplement/vitamin caddy filled. I hate filling it when it's empty, even though I know it's easier for me when it is.
NOTE: Get over it and 'just do it'.

C: Also, I keep a little post-it note next to the vitamin counter that spells out what and how much for each meal.
NOTE: Update and repost that.

D: I haven't reprogrammed our phones since our last set died 2 months ago. I'm tired and it keeps getting pushed to the bottom of my long to-do list. Fortunately, my husband knows how to access my computer and I was coherent enough to tell him where the list of phone numbers was that I had saved.
NOTE: Reprogram the important numbers.

E: I always travel with food and water for my daughter, but this time it wasn't enough. We'd had to pick her up from school to make the appointment and by 4PM she'd gone through all her snacks. I hadn’t anticipated being gone through dinner-time. She didn't get eat dinner until 8:30 that night because my husband had gotten lost on the way home from the hospital.
NOTE: Better emergency kit for the car including a list of emergency foods he can pick up at any grocery store.

F: To top off the possibility of cancer, going through a bone marrow biopsy, getting settled into the hospital and completely crashing from my severe anemia, I was worried about our daughter. He didn’t seem as concerned about the time and her hunger in the same way I was. My husband hung out and hung out waiting for me to get settled while she, as I perceived it, got hungrier and hungrier...(She was VERY good and I doubt she'll have to see a therapist about this when she gets older...)
NOTE: He is her Father. He is capable of taking care of her, he's not going to let her needs go untended and ...I just really have to let go sometimes and let him be her Dad.

G: Most importantly, he got a dose of what I go through every day. He gets that reminder periodically throughout the year and it's good for him and our relationship. Sometimes the best thing we can do is let go and take care of ourselves for a little bit.

So, it’s been a month since that event and my ‘honeymoon’ is over. It's back to the same old grind. Though I don’t know what I have, I know I don’t have cancer. My To-Do list has gotten a little longer, but the order has certainly changed. How many times have you heard about 'planning for disaster' and how many times have you said: “Yeah...Wow! Good idea...I should do that." How many of you have actually followed through?

What about your order? What’s on your list??

Alphabet-Free!

2008-05-14T10:05:00.000-04:00

“OMG! What DO you eat?” That’s a question I hear a lot.
“Plenty!” Is my response.

Really…when you think about it, there is more we CAN eat than CAN’T. It is about changing one’s perception and seeing the glass as half-full, rather than half-empty, which is ironic considering my depressive tendencies. But, having three older sisters who are health-food oriented, creative gourmets in their own rights hasn’t hurt me either. Knowing and experiencing different and varied flavors helps, too, when trying new combinations. Another twist of irony for me considering I’m not very brave when it comes to ‘different’ foods.

…Glad to see I can provide entertainment for the Divine…

By focusing on what we can have, I have enjoyed a resurgence of energy in the kitchen and started using all the toys and gadgets I have collected over the years. I have a beautiful kitchen and it’s nice to actually use it for its intended purpose. What a concept in today’s pre-packaged, fast food society.

(Don't worry...it NEVER looks this nice!)

…now if only I could learn to just follow a recipe…