"Miracle" Recovery?

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

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

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...

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

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

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

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!