8/27/2010

Welcome to Holland...A Poem

A wonderful poem describing life with a special needs child...

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I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

3/18/2010

Got Snow?

We had a nice spring snow today...about 2 inches in an hour, actually! The children had worked hard picking up apples this morning and Daddy wanted to reward them with a treat. He grabbed 3 bowls of fresh snow and stuck them in the freezer till after dinner. While the kids weren't looking he whipped up some homemade snow cone syrup. After dinner, he brought the syrup in from the back porch (where it had been chilling) and told the kids that "magic elves" had brought it for them since they had worked so hard. He poured the syrup over the bowls of snow and what do you know ~ they loved it! After 2 servings of "snow bowls" each...Daddy insisted that they had to go outside and ask the elves if they could have more...cause there was a 2 serving limit. The 2 older children went outside and yelled..."Mr Elf, may I please have some more snow bowl?" Of course, Mr Elf replied, "Yes" is a high squeaky voice...so they each had one more! Here is how we made the syrup:

4 oz. jello powder
3/4 cup boiling water
1 small bowl or cup of snow

We boiled the water, added the jello powder, stirred until smooth then sat it outside to cool. Then pour it over the snow and enjoy immediately!

Easy enough to make some very special children...very happy!

3/15/2010

The Cake Fiasco...

So...in my last post I was headed off to make a Betty Crocker cake for my daughter's birthday. As I was adding ingredients to the cake mix I sadly opened an egg that was all red inside - you know, what you picture when you think of Salmonella? Ewwww, yuck. I now understand why they tell you to crack your eggs into a separate bowl first. I had to throw everything away. And since we live 30 miles from the nearest grocery store that is open on a Sunday...I was outta luck. No cake mix and no eggs. Bummer.
So...I did what any desperate mom would do - I became resourceful. I pulled out my old recipe for Wacky cake. Wacky cake is a recipe from the depression era that has no milk, eggs, or butter in it. I have used this recipe in the past for GF cakes so I knew it could be done. All Purpose GF flour, xanthan gum, cocoa powder, baking soda, sugar, salt, oil, water, vinegar, and vanilla. Easy enough.
The cake turned out ok. The flavor was good and it looked good...just a little off on the texture. It was chewy. Not my favorite. But the birthday girl was happy enough and it looked pretty....right? Next time, I will make sure I have EXTRA Betty Crocker cake mix on hand :-)

3/14/2010

Betty Crocker GF Cake Mixes











Absolutely delicious and worth every penny! These mixes have united my family on the gluten-free front. My husband and daughter - the non-gluten-free members of our family are completely satisfied with these products in place of their usual wheat-based treats. They are easily converted to dairy free by using dairy free butter. The texture and flavor are excellent AND they are much less expensive than some of the traditional gluten free mixes you will find. Best of all...you can find them on most regular grocery store shelves...even here in rural Northern Montana...bought some cake mix at the near-by IGA yesterday!
As a matter of fact...I am off to make a GFDF chocolate cake for my daughter's birthday party tonight! Yum, I can't wait to enjoy it!

3/09/2010

GFDF Peanut Butter Cookies

Yum, yum, yum... the best peanut butter cookies you will ever eat! Even if you are not Gluten-Free!

2 Cups Peanut Butter (I use crunchy)
2 eggs
1 Cup Brown Sugar
1/2 Cup White Sugar

Mix all of the ingredients together. Roll into bite-sized balls and place on a cookie sheet. Press down with a fork making a crisscross pattern on top. Bake in preheated 350 degree oven for 8-9 minutes.

Seriously...that's it! They are moist and chewy and you can really appreciate the peanut butter flavor.

7/31/2009

GFDF Chinese Cuisine

Shrimp Stir Fry

3 Tbsp GF Cornstarch
1 1/2 Cups Cold water
6 Tbsp. GF Soy Sauce
4 tsp. garlic powder
1 tsp. ground ginger
1/2 tsp cayenne pepper

2 Cups fresh broccoli florets
1 Cup sliced carrots
1/2 Cup sliced onion
other veggies as desired (I added squash because it was handy)
1 lb. uncooked shrimp
3 cloves minced garlic
1/4 Cup chopped peanuts (optional)

1. Combine and stir water and cornstarch in small bowl. Add soy sauce, garlic powder and ginger and set aside.

2. In large wok, stir fry broccoli and carrots in 2 Tbsp olive oil or sesame oil for about 3 minutes. Add other veggies (and a tad more oil if needed) and cook for 2 more minutes until tender-crisp. Add shrimp and garlic and cook 3-5 more minutes.

***I threw in some pre-cooked chicken breast strips for the kids at this point since they are not too fond of shrimp.

3. Stir sauce in bowl and then pour over shrimp and veggies. Cook and stir for 2 more minutes or until thick.

Serve over rice!

The whole family loved this dish. It was easy to make, healthy, and very tasty. My husband even commented that it was better than *some* of the Chinese restaurants we have tried. That was a great compliment from him :-) Joshua loved the chicken, which I pulled out for him and cut into bite sized pieces. He even liked his rice w/ sauce over it. Now if I can just get him to eat the veggies I'll be a happy mom!

7/27/2009

Scientists Characterizes New Syndrome Of Allergy, Apraxia, Malabsorption

ScienceDaily (July 15, 2009) — A landmark study conducted by Children's Hospital & Research Center Oakland is the first to reveal a new syndrome in children that presents with a combination of allergy, apraxia and malabsorption. Autism spectrum disorders were variably present. Verbal apraxia has until now been understood to be a neurologically based speech disorder, although hints of other neurological soft signs have been described.


The new study, led by Children's Hospital & Research Center Oakland scientist and pediatric emergency medicine physician, Claudia Morris, MD, and Marilyn C. Agin, MD, a neurodevelopmental pediatrician at Saint Vincent Medical Center in New York, however, suggests that the symptoms of verbal apraxia are, at least for a sub-group of children, part of a larger, multifactorial, neurologic syndrome involving food allergies/gluten-sensitivity and nutritional malabsorption.

"While it is critical to treat verbal apraxia symptoms that often include severe delays in expressive speech production with speech therapy, we need to start asking why these kids are having these problems in the first place so that we can identify mechanisms we can actually target to treat the cause of the symptoms," says Dr. Morris.

Published in the July/August issue of Alternative Therapies in Health and Medicine, the new study takes a major step toward identifying the potential mechanisms that may contribute to apraxia symptoms. In the study, Dr. Morris collected information from nearly 200 families with children who suffered from verbal apraxia in order to better characterize the symptoms and metabolic anomalies of a subset of children. The data clearly demonstrated a common cluster of allergy, apraxia and malabsorption, along with low muscle tone, poor coordination and sensory integration abnormalities. In addition, Dr. Morris was able to gather laboratory analyses in 26 of the children, which revealed low carnitine levels, abnormal celiac panels, gluten sensitivity, and vitamin D deficiency among others.

All children genetically screened carried an HLA gene associated with gluten sensitivity and celiac disease. "The sample size is still small and should be interpreted with caution," says Dr. Morris. "However this is of particular interest given the recent publication by Eaton and colleagues in the July 6 online edition of Pediatrics demonstrating a greater than 3-fold risk of autism in children born to mothers diagnosed with celiac disease. This brings some credibility to the anecdotal reports of gastrointestinal and behavioral improvements in children with autism spectrum disorders and/or verbal apraxia when eliminating gluten from their diets. Although the implications of these observations remain to be determined, this association and the utility of dietary modifications warrant further investigation, particularly if we can identify a genetically vulnerable group".

Most significantly, the data indicate that the neurologic dysfunction represented in the syndrome overlaps the symptoms of vitamin E deficiency. While low vitamin E bioavailability may occur due to a variety of different causes, neurological consequences are similar, regardless of the initiating trigger. The study suggests that vitamin E could be used as a safe nutritional intervention that may benefit some children. Growing evidence support the benefits of omega 3 fatty acid supplementation in a number of neurodevelopmental disorders. Anecdotally children with verbal apraxia will often demonstrate leaps in their speech production when taking high-quality fish oil. The addition of vitamin E to omega 3 fatty acid supplementation in this cohort of children induced benefits that exceeded those expected from just speech therapy alone, according to parental report.

"While data from a case series is by no means conclusive, the results clearly point to the need for further attention to this poorly understood disorder, and a placebo-controlled study to investigate the potential role of vitamin E and omega 3 supplementation in this group of children," says Dr. Morris.

She points out that it is equally important for children given an apraxia diagnosis to receive a more comprehensive metabolic evaluation than what is current practice. Many of the nutritional deficiencies like low carnitine, zinc and vitamin D are easily treated. By not addressing the nutritional deficiencies, the child will continue to suffer from significant medical consequences of those deficiencies. The first step is to identify and treat the deficiencies. The next step is to try to figure out why they have these deficiencies and a fat malabsorption syndrome in the first place. However, Dr. Morris does advise families to work closely with a physician rather than trying promising but unproven interventions on their own.

In the mean time, however, Dr. Morris's study provides the essential foundation for identifying the children who may need these treatments.

"By identifying these early red flags of the syndrome, we've provided a way to get these kids treatment at the earliest possible moment. While 75 percent of the time kids identified as late bloomers really are just that, 25 percent of the time there is a true pathologic condition. To miss it is to miss critically valuable time for early intervention. If a child has all these symptoms, chances are they are going to fall into the 25 percent who have a condition that needs further evaluation and treatment."


Adapted from materials provided by Children's Hospital & Research Center at Oakland

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