Home Again

It is so good to be home!  In 11 hours, I will be holding B and Smoochie in my arms again!  The amount of information we learned at the Autism One conference is overwhelming.  A good kind of overwhelming.  I could go deep into the science, but my brain is mush.  So, I'll share just some of the lighter things I learned:

1. Avocados can be made into delish chocolate pudding!

2. There are more than 5 senses and B has issues with senses I didn't even know existed.  Vestibular?!?  
     Awesome speakers on Sensory Processing Disorder!

3. I so admire and look up to the parents who are finding cures to their children's autism.  They are some of the strongest people I have the privilege of knowing.

4. Jenny McCarthy is a fantastic speaker and advocate for her child.

5. Dr. Wakefield is a hero.

6. Biomedical treatment is unfairly scrutinized.  It has amazing results and makes much more sense than  
     pysch. drugs.  Well, I didn't just learn this...look at B's results!

7. There is such a thing as gluten free, casein free, soy free chocolate chips and soon I will have 4 bags delivered to me :)

8. Bryson's behavior issues are caused by too much sensory stimulation.  So, when he asks for a tent or a really long bath, he really just wants to block out everything for a while.  Hmmmm......maybe I have SPD....

9. Erik and I make a really great team.  He is my rock and my best friend.  We are very lucky to have each others support and love.

10. Cooking for B is tough work, but you know what?  It's not near as hard as not seeing his little face and getting lovies from Jilly for a week.  I will spend 12 hours in the kitchen if it means B & J will be playing at my feet.

* I called B today and said, "You have one more night night time at Grandma's, then we're coming to get you."  He replied with this, "ALRIGHT!!!!  Mom, that was a really long meeting."  I agree.

10 hours and 32 minutes....then all will be right with my world.

Missing the kids....Hello Chicago

We arrived in Chicago for the Autism One conference.  I miss B and Jilly so much!  This is probably hard on Jilly because she doesn't understand why we are gone.  I'm trying not to think about it.

Part of me feels like an impostor (one of B's favorite words) like we shouldn't be here because we don't have an autism diagnosis.  The other part of me is so ready to learn all I can to help Bryson.  I'm especially looking forward to the day devoted to special diets.  That should qualify us, right?  Also, I need to learn more about sensory processing disorder.  It will be great to meet other parents who are experiencing all that we are experiencing.

I'm really hoping the issue of tantrums will come up.  B gets frustrated so easily.  Not angry, but frustrated.  He will fixate on one thing until it is resolved.  When he was two, he threw a tantrum that lasted 1 hour and 22 minutes.  We should have known something was up, then.  His behavior has improved by leaps and bounds since he's been on the rotation diet.  However, he does still have his moments, especially when triggered by an allergic reaction.

I hate it when people see his tantrums.  I know they are thinking, "that child needs a good spanking!"  He gets a label as a difficult child.  He is compared to his easy going baby sis.  I'm guilty of making comparisons myself.  I hope anyone who has witnessed B's challenging moments could see the child he really is.  Sometimes I think if people could see how much I love him, they would see that he is truly an amazing little boy.  It's silly, I know, but the other day I was staring at him intently with love just willing anyone to see how lovable this little guy is.  Perhaps I am just paranoid.  I know he is adored many of our friends and family.

I feel guilty (a mommy's most felt feeling, I think) even writing this.  So, now let me fill you in on my little guy's endearing qualities...there are many :)  He is super creative.  He can make up stories on the spot.  His vocabulary is huge for an almost four year old.  He is so sweet.  At night he asks for a prayer and then asks me to be his "snuggle bug" while we sing lullabies.  He is thoughtful.  Last week a little boy dropped an armful of books and B stopped playing to help him pick them up.  He has the cutest little boy face I have ever seen.  He is awesome with his little sister.  He watches out for her and is disappointed when it's her bedtime.  He is proud of his family.   He loves to brag on his mommy and daddy.  He is brilliant.  When he hugs me with his skinny little arms, my heart just melts.  Can you tell I miss him?

B's Awesome Progress!

We struggled a little at first.  The hardest day for B and me happened at Jazzercise.  It was maybe the second week of the new rotation diet.  We arrived at Jazzercise.  I took B and his little sister to the childcare room, forgetting about the snacks served there.  B went immediately to the graham crackers and brought them to Miss Elizabeth.  He looked at her with such hope in his eyes and said, "Will you please open these?"  I looked at him and watched his face fall as I said, "I'm sorry baby, crackers have gluten in them."  His eyes filled with tears and I can't even describe the look on his face.  It was as if at that moment he realized the magnitude of all this.  That his life was really changed.

Now, he is so good about saying, "No thank you.  I have allergies."  The good news is, B has never cared too much for food.  One time he even said, "Mom, I don't like food."  That means giving up some things hasn't been as hard on him as it would be for somebody who LOVES food (like myself).

The progress we have seen in B is nothing short of miraculous.  He has gone from ticking every two minutes to subtle tics every once in a great while.  He will have whole days where we don't notice them at all.  His behavior is significantly less erratic.  He eats so much more.  He sleeps through the night.  His sensory issues have decreased.  He even stopped biting his fingernails...which used to be down to the nubs and then he'd start on his toenails.  The circles under his eyes have disappeared.  He doesn't get sick all the time.  He is filling out and is so much happier!   Praise God!  I can't even begin to tell you how happy this makes me!  God Bless Dr. Baptist!

God at Work!

So, that handy little book for B's diet?  It turned out to be not so useful.  But let me tell you how God had prepared me for this and gave me the equipment to handle it.

Before I knew about B's food allergies, I was on a MOPS internet forum.  There was a woman there who had mentioned her son's multiple food allergies and I thought, "Wow.  I'm so glad we don't have to deal with that!"  Also, in another post, she said she was so excited about a cookbook that made everything easier for her.  I didn't think much of it.

Fast forward to our first allergy testing results.  I was at a loss, but remembered that post.  I sent that lady a message and she told me the name of the book.  The Super Allergy Girl Gluten-Free, Casein-Free, Nut-Free Allergy & Celiac Cookbook by Lisa A. Lundy

I ordered that book right away.  I read up on rotation diets, not knowing B would soon be put on one.  I learned about food families and nutrition.  I poured over that book for hours, no kidding.  Six weeks later when B was put on a rotation diet, I already knew so much.  I took the handy-not-so-handy book from the dietician and revamped the whole thing to fit B's needs.  I never would have been able to do this without the knowledge I gleaned from that Super Allergy book.  I never would have known about that book had God not put that wonderful stranger in my path.  Amazing.  What is even more incredible is the speaker at the Autism One conference is none other than Lisa Lundy! the author of the book.  We had no idea when Erik signed us up.  God at work!

Fail

I get a big F for this morning.  Supplements are absolutely necessary for B.  Getting him to take supplements is verrrry difficult.  This morning I lost my cool and found out you can not place the pill in B's mouth and expect him to swallow it.  Huge fits and tantrums took place....from both of us.  I asked B's forgiveness and he took some vitamin A drops (which he hates).  I think we need to keep looking for a C supplement that is easier to take.  Sometimes I wish they made 'pill shooters' for kids like they do for animals.

Today I'm attempting to cook a weeks worth of food and snacks for B.  He is going to have a blast with his Grandma Judy while we are in Chicago.  Chicago!  We are going to the Autism One Conference to learn about special diets and sensory disorders.  I hope we gain some good tips and I hope somebody tells us how to get our Super Sensory kid to take his vitamins.

Adjusting

After learning about the 25 food allergies, I had a million different reactions.  The first was confusion.  I could not even comprehend what had just taken place.  I was in a daze.  Next, was anger.  What a quack!  He just wants to sell allergy shots!  He probably didn't read the test right!  B has sensitive skin, of course his skin reacts. My child will be malnourished without these foods!  And finally, resignation.  Well, let's start with dairy and see if it has any effects...it did.

B gave milk up a lot easier than we'd thought he would.  He quickly learned to like soy milk and I even found I could make a really tasty tofu lasagna.  B's tics decreased dramatically.  Next, was wheat.  This was a little harder. Everything has wheat.  We took B to get a full blood panel and had to wait 6 weeks to get the results.  I just knew the blood panel would say B had less allergens than the skin test.  I couldn't wait to get the results!  Then, the appointment we were waiting for had finally arrived.

I stared blankly at the page in the Dr.'s office.  43 allergens.  43 allergens.  43 allergens.  This would not leave my brain.  How could I have been poisoning my boy with every single food I'd been feeding him?  He would cry at the dinner table because he felt bad and I would always say, 'one more bite' or 'eat your peas before you can play'...and it was poisoning him.

This is B's (incomplete) allergy list:  apple, barley, beef!, bran, cashew, cheese, coconut, codfish, crab, gluten(bummer), Honey (okay not an allergen, but not recommended), lamb, lobster, malt, milk, mushroom, mustard, oats, green olives, oranges, peas (favorite), peanuts, pork, rice, rye, safflower, salmon, sesame, shrimp, sole, soy (yep, no more soy milk either), sugar (again not an allergy, but bad for yeast overgrowth), swordfish, tuna, walnut, watermelon (his favorite),wheat, yeast, yogurt.

We got a handy little book that had B's diet all written out for us.  B was put on a rotation diet.  This means the food he eats on one day can not be eaten again for four days along with every food in that food family.

This is what Day 2 of the book looks like:
 Protein: Crayfish   Haddock
Grain: Buckwheat, Tapioca, Hemp
Vegetables: Asparagus, onion, seaweed, pumpkin, cassava, shallot, cucumber, rhubarb, squash, leeks, scallion, zucchini
Fruits: Avocado, mango, pineapple, cantaloupe, melon, pomegranate, caba melon, date, persimmon
Nuts: pine, pistachio, poppy
Spices: bay leaf, cardamom, chives, cinnamon, garlic, ginger, saffron
oils: canola, olive
beverages: cinnamon tea, hemp milk, pineapple juice

Overwhelmed.  I was beyond overwhelmed.  I dreamed of food all that night.  I didn't even know what to give B for breakfast.  I didn't know how I could even fit those foods together to make a meal.  One evening that week, Erik came home from work and I went into our bedroom and I melted down.  I shut the door to our room and didn't come out until the next morning.  God was at work even then.  I'd been having trouble sleeping and was just about to doze off when I bolted upright wide awake with this one almost audible message, "It's just food."  It's so silly that this would bring me so much comfort, but my whole outlook began to change.  The next morning, God gave me this verse:

 "Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous hand. ~ Isaiah 41:10"

God's Hand

It till amazes me to see how God has intervened in our lives.  I know He's always been there, but to be able to go back and pinpoint His work in this is....well I don't even have words.  I am humbled that he would even reveal His miracles to us.

A while back, before our daughter was born, Erik had run across an article detailing the biological responses of the human body when receiving vaccines.  I realize this is controversial, but bear with me.  I don't feel like delving into that topic at the moment.  I only bring this up because without this article, we never would have found the proper treatment for B.

This article caught Erik's attention.  He became very interested in vaccine safety, vaccine side effects, and eventually studying Autism itself.  Through his research, we learned about DAN! doctors.  (Defeat Autism Now)  DAN! doctors use biomedical treatments to treat the root cause of symptoms.

Honestly, I didn't know what direction to take with B's tic disorder.  In conventional medicine, it is common practice to send children to a neurologist, observe symptoms for a year to diagnose Tourette's Syndrome, then either medicate or wait to see if the tics subside.  Erik decided we needed to see a DAN! doctor.  Thank you God for this!

Our first meeting with Dr. Baptist was interesting to say the least.  Honestly, I had no idea what to expect.  I just thought we'd go in, he'd say, "here are some supplements" and send us on our merry way.  Ha!  I should have been more prepared.  He decided to allergy test right then and there.  B tested positive for 25 foods.  Milk being the most tragic for little guy.  He loves milk!  (I would find out later that people with food allergies often become addicted to the foods they are allergic to.  The offending foods create a 'high.' So, when B said 'I need milk cup!' He really 'needed' milk cup.  The lush.)  Also, has many environmental allergies that we are now treating with allergy shots.

Had Erik not found that article, B would either still have major tics and be waiting for a diagnosis or be heavily medicated.  God is Good!

The Beginning of it All

 B has always had odd little quirks.  We just assumed he was a quirky kid, that the apple didn't fall far from the tree.  He doesn't like loud noises.  The vacuum would send him hiding in his room.  I must admit, the vacuum makes me want to hide, too.  Although for different reasons.  He freaks out when his hair is washed or he gets a hair cut.  He would often complain about the morning sun hurting his eyes.  He began to fear swinging on his swing set.  Finger paints would send him into a panic.  As a toddler, I could not put him down.  He had an attachment to me that was more than clingy.  It was desperation.  He would often throw extreme tantrums, not necessarily anger, but frustration.  There was no consoling him.  It's strange to look back at what seems so obvious and realize we were so oblivious.  Something was wrong.

In October of last year, B's grandma noticed he was blinking often and hard.  I blamed it on fatigue.  He had spent a fun filled week with one of his most favorite people in the world.  I ignored it.  Then, around Christmas time, he exhibited a few more peculiar tendencies.  He would chew his food, then refuse to swallow it.  He would do this with tears in his eyes like he really wanted to swallow, but couldn't.  Then he would cough/sniff, cough/sniff, cough/sniff repeatedly.  So much so, it interrupted his speech.  Then, the shoulder popping began.  Shoulders back, then forward, rib cage sliding over his pelvic bone.  The tic that concerned us most was the head rolling.  He would roll his head around so often his chin became red and chafed from rubbing on his chest.  We could ignore the symptoms no longer.  It was time to seek help.  What follows is all God's doing......

All About B

His smile can light up any room.  His giggle is contagious.  His imagination is bigger than life.  He loves his baby sister.  He looks up to his Daddy.  He can always be found close to his Mommy.  He has an ear for music.  When he grows up he wants to be an astronaut and a skeeber diber (scuba diver).  He adores footy jammies.  He sleeps with 3 stuffed animals: Hoo Hoo Ha Ha (his sock monkey), Blue Doggy, and Branson the bear.  He is brilliant, wonderful, amazing, a true gift from God.  And he has food allergies.  43 of them to be exact.

I will attempt to share our journey to create understanding, to keep family updated, and organize my own thoughts.