Autism Signs and What to do NOW

I remember the first time I learned how to google on the internet. It was probably my sophomore year in high school. (Yes, it was that long ago!) I thought it was really a great thing then, but I had no idea how much I would actually have to depend on it one day.

Many parents of children with any kind of developmental delay use the internet for knowledge and information. It is essential, really. I can’t imagine not having it to look up all of the many issues of parenthood in general. Take for instance, when your child has a high fever…You don’t have to call anyone in the middle of the night anymore. I just google it and have an answer immediately. That aspect of the internet is fantastic.

The part that is bad… I have had so many mothers ask me about autism symptoms and criteria for diagnosis of autism. This my friends, is when the internet can be a bad thing. I once was talking about my son lining things up as a toddler and immediately another mother I was speaking to got upset. “My son lines up things, too!” So then they get on the computer and start reading and panic. (I myself, have done this many times) 

My point here is…Many kids line things up, spin in circles, have tantrums or like things done a certain way. What parents need to understand is, that you have to meet a certain criteria of SEVERAL  symptoms together to have a diagnosis of autism. Yes, your child may have a quirky way of lining trucks up in a row; but if that is the only thing he is doing then you need not fret! On the other side of that, you can’t just ignore symptoms either because of denial. I have found a link to a website that gives you a list of red flags.  Also, if you’re a Mom you have gut instinct and if you feel like something isn’t quite right then get your child evaluated. This is from

www. autismspeaks.org

  • No big smiles or other warm, joyful expressions by six months or thereafter
  • No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
  • No babbling by 12 months
  • No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
  • No words by 16 months
  • No two-word meaningful phrases (without imitating or repeating) by 24 months
  • Any loss of speech or babbling or social skills at any age

*This information has been provided by First Signs, Inc. ©2001-2005.  For more information please visit http://www.firstsigns.org or the Centers for Disease Control at www.cdc.gov/actearly.

Always go to legitimate websites such as the ones I’ve listed above.

My other issue with diagnosis is that many pediatricians lack the training necessary to make this decision about your child. If you have noticed all of these symptoms, but your child’s pediatrician uses the “lets wait and see approach”. RUN. Go to someone who is qualified such as First Steps or an early development program in your state. Indiana’s is

https://www.infirststeps.com/

It drives me crazy when people don’t utilize the sources available to them. So what if your child is delayed a little in speech!! Intervene NOW! Don’t wait until they get into kindergarten and the school decides that they are delayed. The quickest way to help your child is to get them the earliest start possible. I really regret not getting Makenzie evaluated by first steps. (Although girls with autism present themselves differently) I finally came to terms with her delays and got her into the developmental preschool program in our school district. Denial is a very bad thing.

The sooner you find out what is going on with your child, the sooner they can start recovering or getting better. People say that there is no cure for autism….The reason is because every child with autism is completely different then another. You have to evaluate the child’s delays and work on each problem. For instance, with my children, diet was essential to get them on the road to recovery. As you can see from previous blogs and my gluten-free enthusiasm, that my children have had a great response from diet. Do I think every child with autism can be helped on the GFCF diet? Absolutely not. I won’t give people false hope. I do think parents of children with any kind of delay, ADD, autism, ect. should get an allergy test, celiac test, and a sensitivity test before even attempting a diet.

Sensory issues are huge with my children, too. Learning about sensory is a must with autism. These kids have a million things that they have to conquer everyday just to be able to function. Imagine going into a wal-mart or a grocery store and feeling like the lights are 1000 times brighter than they are….Not being able to block out background noises to the point of panick. My kids sleep with a weighted blanket every night. They have O.T. at school and get sensory breaks daily. Sensory Processing Disorder isn’t just a problem with kids on the spectrum of autism. Some kids have sensory issues without having any other delays. One of the best books ever for this is:

The Out-of-Sync Child by Carol Stock Kranowitz, M.A.

When I couldn’t get Kenzie potty trained, I beat myself up about it. I thought I was a bad parent. I got mad. I did everything you are supposed to do to potty train. Nothing. Then, I read this book and felt better than I have in 6 years. I understand my children from reading about sensory processing disorder. I know how to comfort them better because of it.

Many children with autism also struggle socially. One of the first things, Alex use to do at family functions was get under the first table he could find and hide. (This is rare now that we are gluten-free) The many voices, and different faces, questions, and chaos of family gatherings was traumatic for him. The social part of the autism is the part that I have really had to learn about. As a child, and as an adult I have always been very social and outgoing. I can strike up a conversation with just about anyone, so it is hard for me to understand what it is like. Being social and having friends is something that people usually just know how to do. My kids have had to learn how to play, talk, and act with friends.

I feel like we are going the right direction with our kids. Sometimes I wish we could do more. The best thing we ever did was seek help and diagnosis. I always wonder how many kids I had in my class growing up that were on that line of autism(high functioning autism). The ones that were always in trouble, couldn’t sit still, socially ackward, and learning disabled. How many of those kids could have had better lives. Maybe they could have been better adults if they would’ve been understood. 

Still today, with all that we know about autism and developmental delays, some people just don’t get it. They want to say it is bad parenting, bad kids, ect. This year we are lucky enough to have wonderful teachers that GET IT. They get it and they don’t make my children feel bad about themselves. Most importantly, they work with me to help my children grow and become the best that they can be.

Bottom line:  If in doubt check it out! Please use all of the above references to make sure your child is helped if needed. Maybe, you are being overly worried and it isn’t anything. It doesn’t matter if you take them to get evaluated and you were wrong. What matters is, that you do everything possible for your kids to have a great start in life.

Gluten-Free Multi-Grain Bread

 
Tastes so great, fresh and warm, right out of the oven!

Revised from previous post

1/2 cup Brown Rice Flour

I keep all my flour organized and labeled for easy access

1/2 cup Sorghum Flour

1/2 cup GF Oat Flour
2 tsp. Active Dry Yeast(See side note)

1/4 cup Tapioca Starch
1/4 cup Cornstarch

3 tsp. Xanthan Gum
1/2 tsp. Sea Salt
2 tsp. Flax Seed
2 Eggs (room temp.)

Before going in the oven

2 Egg Whites (room temp.)
1 Cup water at warm (See side note)

1 TBSP Sugar (See side note)
2 TBS. Canola Oil
1 1/2 TBS. Honey
1 1/2 tsp. Apple Cider Vinegar

 
**Side Note:  Warm water in the microwave about a minute
or until it’s a little hotter then luke warm. Add sugar and let disolve. Next add yeast to water and sugar mixture. You may have to help it mix in with a fork. Let set while you mix the other ingredients. It will look like the picture on the right.

Preheat Oven to 200 degrees. Sift the dry ingredients together in a bowl. Don’t add the yeast. (See side note above.) Combine the wet ingredients in a seperate bowl by hand or a mixer on low, just until combine. (I beat the eggs before adding the other ingredients….) Slowly add the dry ingredients and mix until fully combined. This isn’t like regular bread so it will look more like cake batter. Pour into greased 9 x 5 bread pan. TURN THE OVEN OFF!!! Place the bread inside the warm oven and let rise for 90 minutes. Do not open the oven door during this time.
Increase heat to 350 degrees and bake until the crust is golden brown and a knife inserted comes out clean. About 35-40 minutes. My bread always rises great, then falls after I take it out of the oven. It doesn’t effect the taste! I like to double this recipe and make 2 loaves. I usually eat one fresh and freeze the other. When freezing cut into slices first then put wax paper cut into rectangles to put in between. (shown in pics…) Just take out of the freezer one slice at a time and put in a toaster or toaster oven.

If your first several loaves are terrible, don’t get discouraged! Seriously. This isn’t something I could just do over night.  My first loaf of bread that I made was hard as a rock.  Our dog at the time thought she was getting a treat when I threw it out back. I could here her dropping it trying to carry it to her dog house. Thud! Two more steps…Another Thud! It was  so bad that she ended up giving up and not eating it at all. 

I cut wax paper into rectangles and place in between each slice for freezing.

QUINOA

Quinoa Chipotle

I know…I know….You have probably never heard of this grain before. I first learned of quinoa (kēenwä‘), when researching all of the gluten-free flours on the market. I bought the flour and never really made much with it at the time.

Recently, my neighbor and good friend, Melissa asked me to grab her some while I was at the health food store. She was making it in the place of rice in butternut squash dish. As with anything, I always have to google and read up on it.

Incas, held the crop to be sacred. It was referred to as “mother of all grains”. Quinoa was of great nutritional importance to the Incas. Pre-Columbian Andean civilization held quinoa only second to the potato as a staple crop.

The reason for it’s importance to these cultures? It is a superfood full of vitamins and minerals. Quinoa is a fantastic source of magnesium, copper and phosphorous. (Great for those suffering from diabetes and migraine headaches…) The protein in quinoa is high at 12%-18%. L-Lysine (not common in grains and carbohydrates) helps with calcium absorption, building muscle protein, and the body’s production of hormones, enzymes, and antibodies. Quinoa is also rare in the fact that it contains a balanced set of essential amino acids for humans, meaning it is a complete protein, not common non-meat foods. Adding to the already amazing list of benefits is dietary fiber and iron. It is also of course, gluten-free!! Because of all these characteristics, quinoa is being considered a possible crop in NASA’s Controlled Ecological Life Support System for long-duration manned spaceflights. (1)

So after all the good things I found out about this wonderful grain, the recipe Quinoa Chipotle was born. I got great reviews from Kenzie and Chris, so now I will try to swap out my rice dishes with quinoa as much as possible.

QUINOA CHIPOTLE

1 teaspoon olive oil
1 onion, chopped
3 cloves garlic, minced
3/4 cup uncooked quinoa
1 1/2 cups chicken broth or chicken stock
1 teaspoon ground cumin
1/2 teaspoon cayenne pepper
salt and pepper to taste
1 (15 ounce) can corn kernels or frozen corn
2 (15 ounce) cans black beans, rinsed and drained
1/4 cup chopped fresh cilantro
1 teaspoon lime

Directions
1. Heat the oil in a medium saucepan over medium heat. Stir in the
onion and garlic, and saute until lightly browned.
2. Mix quinoa into the saucepan and cover with chicken broth. Season
with cumin, cayenne pepper, salt, and pepper. Bring the mixture to a
boil. Cover, reduce heat, and simmer 20 minutes,
3. Stir corn and beans into the saucepan, and continue to simmer about
5 minutes until heated through. Mix in the cilantro and lime juice.Serve as a main dish or side. Makes about three servings as a meal.

 

 

 

 

(1)a b Greg Schlick and David L. Bubenheim (November 1993). “Quinoa: An Emerging “New” Crop with Potential for CELSS (NASA Technical Paper 3422)” (PDF). http://ntrs.nasa.gov/archive/nasa/casi.ntrs.nasa.gov/19940015664_1994015664.pdf

Comfort Foods

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When you are on a gluten-free and dairy free diet you have limitations as far as comfort food goes. No more donuts, cheeseburgers, pizza, or pasta. It is so hard to let go some of your favorite foods when going gluten-free. My favorite meal has always been spaghetti. That’s what I always wanted for my birthday meal as a child. So after many attempts at finding a good GF pasta, I finally found one in Tinkyada’s brand. It is even made from brown rice, making it a healthier choice. I love, love, love making the kids baked spaghetti. Stir some spaghetti sauce and pasta together and top with daiya mozzarella cheese and bake it at 350 until it browns on top. Voila! Baked spaghetti! Another great all time fave is spaghetti and meatballs. We just made this last week and we all loved it!

GF Spaghetti and Meatballs

Spaghetti (I use Tinkyada brand)

1 lb. hamburger

1 egg

3/4 c. GF bread crumbs

1/4 c. onions chopped fine

1/2 tsp. Gluten-Free Italian Seasoning

1 tablespoon of finely chopped sweet green pepper (optional)

1/2 tsp. Sea salt

Spaghetti Sauce

Combine egg, bread crumbs, onion, sweet pepper, seasoning and salt in a large mixing bowl. Add ground beef and pat into a rectangle on wax paper as shown in the picture. You can then cut into squares. (Size depends on your taste.) Roll into balls and put into a 350 oven for 15-20 minutes. When done drain (if needed) and simmer in spaghetti sauce. Serve over spaghetti noodles.

Gluten-Free Tempura Batter (Onion Rings)

1 1/3 c. All Purpose Gluten-free Flour (I use Bob’s Red Mill)

2 Egg Yolks

1 1/3 c. Ice cold water

1/2 tsp. Xantham Gum

1/2 to 1 tsp. of Sea Salt (As desired)

Mix flour, egg yolks, and half of water in a bowl. Whisk rest of water in until smooth; then stir in salt if desired. Batter will be thin, this is normal. Coat onions before dropping into hot oil. We use a deep fryer. (As you can see in the pictures we fry things outside in true country-style!) Also, canola oil is always better for you then vegetable oil.

I was really craving some all-american food tonight so I went all out and had some big ol hamburgers to go with it. These onion rings are amazing!!!!! The hamburger is on a Gluten-Free hamburger bun by Kinnikinnick topped with all the trimmings. This batter is also good with any vegetables, apples, seafood or chicken.

ENJOY!!!!!!!!!!!

Makenzie’s Food Sensitivities

When we took Alex off of Gluten, it was easier to have Kenzie on the diet too.  When she started eating table foods, I wasn’t extremely cautious with the gluten because I thought she might be different. Wrong. Her symptoms presented differently then her brother.  Since she was born, she had an extreme case of eczema covering her body. It would be off and on, sometimes she would wake up with swollen eyes and dark circles.  I would schedule pictures all the time and then have to cancel because of a break-out.

I tried everything…I took out fragrances, parabans, and went to all natural soaps and detergents. I do think this helped to a point, but only because it was just better for us and the environment. (We try to be as green as possible without breaking the bank.) I took her to a dermatologist who gave us some cream and sent us on our way. He just told us that some people have eczema and their wasn’t much we could do.  Anyone that knows me, knows that I wouldn’t give up that easily.

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Our next trip was to see a Pediatric allergists. We did the skin testing on her back. Trying to get a 3 year old to hold still for 30 min. was not easy!  He came back into the room to tell me that she didn’t have any allergies. NONE!  My daughter had swollen eyes, has a rash all over her body, and at that time had started showing signs of autism. (She did end up being diagnosed with Aspergers.) She had started having severe tantrums and withdrawing from the world. She seemed distant and unable to retain information. It felt like we were losing her.

I was running out of idea’s on how to fix this one.  So, like with Alex, I quit listening to doctor’s and started doing my own research. I decided to completely cut out gluten and see what happened. (It can take up to year for some people to get gluten completely out of their systems.) I knew it wouldn’t be a quick fix. It did get a little better… She was still miserable with the itching and swollen eyes.  I couldn’t understand how she didn’t have one single allergy!!!

Then one day, a miracle would happen.  I walked into a health food store to do some shopping for fragrance free soaps to try.  The owner asked me if I needed any help finding anything. “No, just trying to find some soap for my daughters eczema.”  She asked me if she had been tested for food allergies. I told her yes, but they said she was negative. That was the moment that I was told about Dr. Lamse for the first time. She told me about her and her daughter getting tested for food sensitivities. It had cleared up both of their eczema.  I had no idea you could even be tested for such a thing. She gave me the doctors number and we made an appointment right away.

We met Dr. Lamse and discussed Makenzie’s symptoms.  By this time, I was getting really worried because she had begun stemming and having severe tantrums. I felt helpless.  She had begun having tantrums, spinning, and the skin rash was still hanging on despite everything I was doing.  Dr. Lamse then explained to me that food sensitivities can be just has bad on people as regular allergies.  Food sensitivity procedures that Dr. Lamse uses is a test that checks IgG  antibodies or a prick test for IgE . After getting the results you do a food rotation plan to see if the foods are a problem. http://www.lamseclinic.com/

I was on pins and needles waiting on that test.  When we went back for the results we would discover that Kenzie in fact had sensitivities to dairy, peanuts, almonds, and tested at moderate for gluten. Which she hadn’t been eating, so the fact that it showed up at all made me sure she was a definite problem. Most likely she doesn’t have celiac, but since she doesn’t eat gluten we may never know for sure. It is in the family, so we will always have it in the back of our minds for future reference. All I know is that gluten makes my kids miserable!

We took out all of the offending foods.  At first she got worst…Come to find out this is normal. Then one day, she woke up completely cleared up and swollen free. Her behavior changed, too. No more tantrums and the stemming got better. Although, she does have high functioning autism, I know it would be even more severe had we not met Dr. Lamse. 

The rash would show up here and there, again. I then found that the soap I was using had wheat germ oil in it. After removing all gluten, dairy, peanuts and almonds she is eczema free.  We always know when she has accidentally got a food, because sure enough she will wake up with circles under her eyes or get a touch of the eczema. 

What amazes me the most? At the time we did this test it wasn’t covered by insurance because it wasn’t medically proven!  Well….to those scientists and doctors look at the pictures!!!!!!!!!!  (As of 2011 some companies do cover the test with insurance.) I hope more people will start to see what food sensitivities and allergies can do to a person.  How simply changing your diet can save you from a lifetime of heartache. 

As for us…We are forever grateful to Dr. Lamse for changing our lives and giving us answers.

Side note:  NeuroScience www.neuroscienceinc.com now offers a food sensitivity test that is covered by some insurances. I just had the test done for myself. Also you can visit Dr. Lamse’s website: http://www.lamseclinic.com/

From Wikipedia, the free encyclopedia

Gluten sensitivity (GS) encompasses a collection of medical conditions in which gluten has an adverse effect. For individuals with gluten-sensitive enteropathy, removal of gluten generally results in the restoration of villus architecture or lower lymphocyte densities in the intestine.With some sensitivities, improvements may be seen in the neurological state, but a clinical finding may not be clear.  GS also can affect blood chemistry,treatability of certain autoimmune diseases, and/or an untreated improvement in autoimmune conditions.

How we came to be gluten-free

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I wanted to do this blog to teach others all of the things I’ve learned in the past 6 years.  I have a lot to talk about so I guess I will start with how we came to be gluten-free. 
In January of 2007, our son, Alex, was diagnosed with PDD-NOS. (A high functioning form of Autism) As all Mom’s out there that have had a child diagnosed with autism you understand what it is like to hear those words. “Your son has a form of AUTISM.” It plays over and over in your head and it feels like it isn’t even real. Did he say that? Did he say something about autism? I knew it…I had that sinking feeling in my gut the first time he started banging his head on things. He started spinning in circles, lining up all his toys, and quit talking. His speech therapist was the first to mention it. AUTISM. No….not my child. Surely she is wrong. Then I knew. The tantrums started, I would be smacked in the face, bit and kicked all within seconds. Going anywhere with him became a struggle.  For awhile it felt like we were hermits, hiding from the world, protecting our son from stares of unaware strangers. The lack of understanding about autism and the different spectrums of it are so sad. People have one outlook on autism….They only know of the severe kind. (Think Rainman, with Dustin Hoffman, 1988) Family and friends would reassure me that it was all “normal” toddler behavior. I wanted to believe them, I did.  As a mother, my gut instinct knew that something was very wrong.
So after one diagnosis of a developmental delay from Riley, he still didn’t seem right. I had a second speech therapist say that word again…autism. We had him evaluated again in January of 2007 and sure enough he received a diagnosis of PDD-NOS (Pervasive developmental Disorder-Not Otherwise Specified). We would come to learn that this is  a form of high functioning autism.
After the diagnosis, we cried and mourned the loss of our son. That sounds horrible, but that is what it is….Everything that you plan on that child being or becoming gets thrown out the window.  You don’t know what the future holds. We didn’t know if he would ever have normal speech or be social. We felt helpless with the information. It was a tremendous load off of our shoulders to know, but now it was so real.
So, after crying and crying for days….A fire ignited in me. I became a mom on a mission.  I didn’t care what I had to do or how, but I was going to fix this!  Every book, treatment, ect. I was going to find a way!
I had randomly heard of GFCF (Gluten free, casein free) on Oprah a few years before. It had stuck with me I guess. I ordered the book, The Kid-Friendly ADHD & Autism Cookbook by Pamela J. Compart, M.D. and Dana Laake, R.D.H., M.S., L.D.N.  I read the part about Celiac Disease and it struck a nerve with me. He had all the symptoms. Diarrhea and neurological symptoms. I started the diet immediately. (I don’t recommend doing this because we should have had him tested for celiac before going on the diet.) We got the blood test, which showed up positive. He received a biopsy that was negative. The doctor said he did not have celiac.  He was however lactose intolerant to dairy, which led us to eventually cut out dairy, too. I didn’t care whether he did       or he didn’t have celiac because the diet was helping him. We would later come to the conclusion that he has a gluten sensitivity.
After starting the diet his words tripled! I’m not exaggerating because I had a speech therapist and an occupational therapist that documented the changes. He was a different child. Stemming and tantrums were cut in half. His behavior in general was completely different. He was more social, too. The diarrhea stopped, and he became potty trained 2 days after starting the diet.
Unbelievable, was the only way to describe it. Some of the doctor’s didn’t agree with me that it was necessary for him to be on the diet. Even my husband was uncertain if we were doing the right thing. Going on the diet is stressful for everyone at first. Cutting out all of his favorite foods was difficult, too.  No one had a cut and dry answer for doing it.  After about a year I took him off of the diet to see what would happen and he started doing all the same things again.  After that Chris was begging me to put him back on the diet!  Now it has been 3 years since going gluten-free and we will never go back.
I have no doubt in my mind that if I had not opened that book our life would be different now. Gluten free has saved my son’s quality of life. I hear people say all the time, “How do you do it?, “Your poor kids can’t eat anything!”, or “It’s so expensive, we could never afford it.” What they don’t realize is how hard it was before we changed his diet. We have less medical expense because of the improvement in his overall health and well-being. He is a happy little boy now. He still has PDD, but it is mild compared to what it would have or could have been.

 We still eat cookies, pizza and french fries. We aren’t perfect when it comes to our diet. They make all the same junk food in gluten-free versions, so we still have to be careful. Alex hates vegetables and I have to try to sneak them into him by hiding them in other foods. Thanks to the recent boom in the gluten-free industry being on the diet is a lot easier than it was 3 years ago. Restaurants are putting more effort into food allergies and cross contamination. General Mills has come out with gluten-free versions of cake and brownies.

 So here we are today!  Myself, Alex, our daughter Makenzie, my Mom (recently diagnosed with Celiac Disease) are all gluten-free. We are healthier and happier because of it.
From Wikipedia, the free encyclopedia
Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) is a pervasive developmental disorder (PDD)/autism spectrum disorder (ASD). While those with it have some characteristics of disorders on the autistic spectrum, they don’t fit the diagnostic criteria of any of the other disorders thereon. While PDD-NOS shares similarities with autism, it tends to be milder.[1]
 “Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS)”. Yale Child Study Center. 2008-05-06. http://info.med.yale.edu/chldstdy/autism/pddnos.html. Retrieved 2008-06-17. 
 
 From Wikipedia, the free encyclopedia
Gluten sensitivity (GS) encompasses a collection of medical conditions in which gluten has an adverse effect. For individuals with gluten-sensitive enteropathy, removal of gluten generally results in the restoration of villus architecture or lower lymphocyte densities in the intestine. With some sensitivities, improvements may be seen in the neurological state, but a clinical finding may not be clear.  GS also can affect blood chemistry, treatability of certain autoimmune diseases, and/or an untreated improvement in autoimmune conditions.

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