It's Time...

When I started this blog, I was looking down a winding path.  I didn't know what this journey would entail, what it was, or even how to begin.  With each step, I've poured out my heart.  I bared my soul with such vulnerability that I sometimes shook with nerves after I hit 'publish.'  I have learned so much..and shared it.  I have grieved so much...and shared it.  I have felt peace...and shared, joy...and shared, fear...and shared, anger...and shared.  I have been judged and it stung.  I have been encouraged and it felt like a million helium balloons lifting me into the clouds.  We have been prayed for...and you'll never know this side of Heaven how much that has meant to us.

B is getting older now.  So much a mix of little boy and big boy that I get a lump in my throat when I see his features changing.  New, grown up teeth.  Sweet little man ears.  All knees and elbows.  I swell with pride when I see the wonderful person he is now and is growing up to be.  I have no doubt he will touch many lives.  Along with his growing up, comes the release of some of little boy I've been holding onto.  He is becoming a boy with his own ideas, his own set of feelings, and perhaps a need for privacy.

I wonder how many tears of triumph and pain I've poured into this blog?  They must be innumerable.  I've been working on releasing pain and acknowledging blessings.  The blessings are many.  Moving on from this blog is part of that process.  There is so much pain on these pages. \I need to move beyond that pain and rest fully in the assurance that God has this.  He has always had this. We still have a ways to go.  We still struggle.  B could still use a lot of prayer.  But he is flourishing in ways I didn't think possible.  The path still winds and the end is still unseen.  But we are not walking this alone.  Thank you for following us, helping us, loving us, and praying for us.  Thank you, Heavenly Father, for carrying us.  We will make it to the end of this path and what a glorious day that will be!



 

April

  Light it up blue!  Embrace Autism!  Autism Acceptance!  It's April.  Autism Awareness month.  Blue puzzle pieces and happy slogans are all over the internet.  There is nothing wrong with loving our children, accepting our children.  We should love our children.  Embracing and accepting iatrogenic autism, I cannot and will not do.  Ignoring the medical side because *shrug...that's just autism.*  I will not do.  Accepting that 1 in 50 children are diagnosed...and growing!  That, I cannot do.  When autism awareness turns into passive acceptance, we are in trouble.  Today, children will lose their ability to talk.  I'm not celebrating.  Today, children are have nonstop diarrhea.  Not celebrating.  Today, children are self harming.  Not celebrating.  Today, parents are taking their children to the pediatrician to get vaccines on an untested schedule.  Not accepting.  Some of those children will have a seizure and parents will be told, 'that's normal' or 'we must have missed a seizure disorder'  oops.  Some of those children will disconnect and doctors will say 'it's coincidence that it happens around the same time as the vaccines.  No, the seizure had nothing to do with it.'  I will never embrace that.

B's diagnosis is PANDAS.  So why should I be bothered?    If we had taken B to another physician, he would have easily been diagnosed as autistic.  His score on the ATEC was 67.  Last year, we listened to a PANDAS specialist speak.  He said that PANDAS follows a progression PANDAS, then PDD-NOS, then classical autism if it is not addressed.  I believe we were on that track.  PDD-NOS.  At that time, B fit much of that criteria.  Also, B had/has many of the same medical co-morbidities as children diagnosed with ASD.  How can I not believe autism is medical when my son's own medical condition gives him characteristics of autism when he is in a flare?  

I read an article today about autism acceptance.  It seems there is an undercurrent of 'biomedical intervention' equals a 'lack of accepting your child.'  This is where I see the 'Acceptance' movement going. Read through my entire blog from post one to this one and tell me that I am not accepting of my child.  We have poured many prayers and tears into this journey and it is all about helping our child.

We have helped B love swinging again.  We have helped him eat and enjoy food again.  His bath water no longer hurts his skin.  His constipation is gone.  No more random rashes.  He relates to his peers in a way he didn't before we changed his diet.  He is able to receive hugs from family members.  We have eased his hair trigger meltdowns.  He sleeps all night without waking.  He no longer tics until his chin is bleeding.  The tics are not affecting his speech or the way he walks anymore.  His tummy aches are gone.  Loud noises do not make him run, hide, or scream.  He can walk across a parking lot without panic.  Dark circles and sadness are gone from his face.  A few months ago, his ATEC was 28.  From 67 to 28.  This was not about changing my child, it was about helping him feel comfortable in his skin and in his world.  Decreasing the inflammation in his body, so it could function the way it was made to do.   This was about addressing medical concerns in a more natural way.  Finding the root cause and most natural approach before choosing the pharmaceutical route.  The sentiment going around is that helping my child in this way is a selfish choice.

The other night, B wanted to talk about his tics.  They are less frequent now...I may talk about that in another post.  He said, "Mommy, when I would tic, before the tic there would be a pain.  The tic helps the pain go away."  He was very candid in this conversation.  I told him that I knew that treatment is a lot of work and asked if it was too much work.  He said, "Mommy, I'm glad we're doing everything to help me feel better."

This month, I will not be lighting it up blue.  Or embracing autism.  Or accepting autism.  I will praying for our children.  I will be embracing my beautiful child.  I will be accepting his wonderful gifts and helping him develop them further, while still healing his body.  He is not Autism.  He is not PANDAS.  He is B.  And he is wonderful, amazing, beautiful, talented, smart, funny, kind hearted, sensitive, creative, incredible.......  



 

Our Homeschool

I'm often asked what we use for curriculum when we homeschool.  This is what has worked (or hasn't) worked for us this year.



Explode the Code- After purchasing and and ditching two pricey reading programs last year, these  books are what taught B to read.  They made it click for him.  He breezed through book 2 this year and is currently working through book 3.  I love how every lesson slowly builds on the last one until concepts are mastered.  Another perk about the books?  They are very affordable!



Spectrum Spelling- We don't use this book often anymore.  B has learned so much from Explode the Code, it felt like overkill.  We use the spelling book on weeks we do not have a lesson from our Reading book.



Evan-Moor Reading - This book, I bought on a whim when B asked me to.  He really likes it so far.  I like the comprehension activities and phonics/spelling review.  B likes the fact that he gets to draw, cut, and paste for some of the activities.


Bob Books- I really liked these for Kindergarten.  They gave B such confidence!  This year, though, when B went through two sets of books fast, I knew he'd outgrown them.  Now, I have him pick a book from the bookshelf.  We have more books than bookshelves, so there are a lot to choose from!  If it's a difficult book, I'll alternate pages with him.  If the book is at his level, he'll read the whole thing to me.  It's amazing how much just reading aloud has helped his reading skills.



Singapore Math- This program for Kindergarten was wonderful!  It was B's favorite subject.  This year, it's not a match.  The way mental math is taught is abstract to B and honestly, to me too.  B can do math mentally, he just takes a different approach than is used by this system.  It also moves too fast, into higher math without mastery of the basics.  I've had to stop and supplement too often.  I've heard great things from other families, but I think we'll be looking at a different curriculum for next year.  I'm seriously considering
 Math-U-See for my visual learner.



Story of the World- This book is so, so good.  History is by far our favorite subject this year.  The text is so engaging.  We both find ourselves wanting to know more about the people and cultures covered in this book.  This week, we have been learning about Greece.  To supplement, we've also been reading Greek mythology.  B is fascinated.


Character Sketches from the Pages of Scripture, Illustrated in the World of Nature- Erik's cousin recommended this book to us when B was a toddler and Jilly was just a baby.  I'm so glad we ordered it.  It is truly a book we will treasure for years.  It focuses on character traits and then shows how these character traits are displayed in the animal kingdom. It also demonstrates these traits in the Bible.  For instance, this month we have been learning about loyalty.  We learned how bees are loyal to their hive and their queen, geese are loyal to their mates, and what happens when a little bear cub is not loyal to his mother bear.  Also, how Mordechai was loyal to the king...even when it was difficult and what happened when a soldier was not loyal to his commander.  We use this for science, as well. The animal descriptions are very in depth.  The pictures are beautiful.  I find myself growing in faith from this book.

Sight word practice- B has a stack of sight word flashcards.  We review them about 3 times a week.  Every time he gets the word correct, quickly without obviously sounding it out, that word gets a check.  When he gets 3 checks, the word is taken out of the stack and written on his word wall.  He enjoys sight word practice because he's quite good at it.

Math- Flashcards, printables, time tests, and computer games.

Writing- We have a writing corner in front of his word wall.  On it, we have a basket full of different types of writing paper and a notebook of words he needs help spelling.  Topics vary.  Yesterday, he wrote about the snow falling off the roofs of houses and what it was like to walk in the snow.  Writing is his least favorite subject.  One time (before his spelling had taken off), he was a little passive aggressive and wrote, "A long tim ugo, I poct Mommy with a stick."  Complete with illustration!  Sometimes, his writing is sweet...like the Valentine he wrote for his Nana.   He also has a journal for corresponding with Erik or myself.

Science- This year, other than Character Sketches, science is being led by B's interests.  We've learned about space, deserts, snakes, scorpions, bees, insects, bones, the digestive system, the city water system, muscles.....so many things.  We surround him with books, visit the library for more books and documentaries, watch science videos, and explore the great outdoors.  Next year, science may be more focused, but it has been a fun year to watch where B's interests take him.

Homeschool Co-op- This is new for us over the past few months.  B is really enjoying it.  We get together with other homeschool families and classes are offered.  B has dabbled in guitar, origami, science experiments, and had a tea party.  This week, he wants to learn sign language and do some more science experiments.  Fun!

AWANAS-  I can't say enough about this program.  It is the highlight of B's week.  He gets to play games, memorize scripture, learn about God's word, and fellowship with friends.  I am amazed at his biblical knowledge for such a little guy.

Calendar Time- We used to do calendar every day, but now we reserve it for the days Jilly is having school with us.  She attends a preschool a couple days a week. We use calendar time to discuss the weather, add numbers to our number chart,  and count by ones, twos, fives, and tens.  We use it to learn place value, money, days of the week, and months of the year.  When Jilly is with us, we read from a children's Bible.

Literature- Erik and I read to B and Jilly a lot.  This year, we've read Mr. Popper's Penguins, The Boxcar Children, a book about Alladin, Rikki Tikki Tavi, Greek mythology, The Littles, and a few others.  I love those moments of snuggling up and getting lost in a book.

Field Trips- Occasionally, we need a change of scenery and decide to go an adventure.  We've visited the zoo, the nature trail, museums, the Discovery center, and sometimes just the park.  Consider it recess. :)  Homeschooling is portable.  There;s so much to learn from God's creation.  Sometimes it's nice to close the books and experience it.

Leaving Egypt for Good....or How I am like the Israelites

B was talking with me tonight about Moses and the Israelites.  Moses led the Israelites out of Egypt...out of bondage.  First, they were happy and rejoicing.  Then, after a while, when things weren't going the way they wanted, they began to complain and become bitter against Moses and turned their backs on God.  I always thought, wow, after everything God had done for them?  After all they'd seen?  He freed them!  Moses led them.  B said, "The people thought that one with the stick (Moses) was making things worse."  My mind had a hard time wrapping around that.

That is, until I started thinking about B's journey.  I realized I have a lot in common with the grumbling Israelites.  For a while, I had been thinking, what if we never knew about B's allergies?  Wouldn't life be simpler?  Stress free?  Ignorance is bliss.  If I had known Dr. B was going to test B that very first appointment (and known the outcome), would I have gone?  When I see kids that show the telltale signs of food allergy and their parents do not know...is their life better?  More relaxed?

God gave the Israelites manna.  It literally fell from the sky.  They had the assurance that they wouldn't go hungry.  "Who will give us meat to eat?  We remember the fish which we ate freely in Egypt, the cucumbers, the melons, the leeks, the onions, and the garlic; but now our whole being is dried up; there is nothing at all except this manna before our eyes!" (Numbers 11:4-6)

God gave us the tools to heal B.  He gave us the ability to afford the foods that B needs.  He has provided so much and I sound like the Israelites.  "When can we eat like normal people?  I remember the restaurant trips, the pizzas, the birthday cake, the potluck dinners.  Now there is nothing at all except all this organic produce, gluten free grains, and free range buffalo, emu, and elk."  Ha!  When I look at it like that...what a whiner I have been!  God has been so good!

God promised to lead the Israelites to the Promised Land.  They started to doubt, to become blind to God's providence.  All this time God has been healing Bry, I started to doubt, to complain, to focus on how hard the journey is.  I started to become blind to God providence.  He's brought B so far, so far that B's PANDAS is becoming less apparent.  Why was I complaining?  Yes, the journey is tough....but isn't that what makes the destination sweeter?  B was in bondage to his illness, his allergies, his sensitivities, his fear, OCD, tics.  Little by little God has healed these things, is still healing them.  Why in the world would I complain and look longingly back at life before we knew?  Just like the the Israelites looking longingly back at their slavery in Egypt.

I'm looking forward now, and thanking God for the journey.  Thanking Him for guiding us and providing for us.  Thanking Him for loving B and watching over him.  I'm done wallowing.  Done.  God has been so, so good to us.  It's time He is given the glory!

Highschool or Facebook?

She makes me uncomfortable.  I don't need that.  *Unfriend*
Wow.  She really needs to get a grip.  I can't even deal with that kind of crazy.  *Unfriend*

I know she's family, but only distantly, and darn if she doesn't just ruin my rose colored glasses. *Unfriend*

I have a love/hate relationship with Facebook.  On the one hand, I love staying in touch with friends.  Through facebook, I've started a support group for families dealing with food allergies.  The people in the group have been a tremendous help to me.  There are Christian Homeschooling groups, biomed groups, mothering groups.  So much support!  And lets face it, when you are a stay at home, homeschooling mom, your opportunity for socializing with other adults is slim.

Have you ever had one of those awkward phases of life?  Where everything you said and did just didn't fit in?  For me, it was 7th grade till, I don't know...my sophomore year of high school? I still cringe when I think of some of the things I said and did trying to fit in, only to look more out of place trying too hard.  One thing was apparent in that atmosphere.  If you didn't conform, you were not cool.  (Okay, so 'cool' is probably not a word anyone uses anymore, so insert whatever the kids are saying now.)  So, the last three years of high school were spent making poor choices to finally fit in.  Trading what I knew was right for what was not good...but was popular.

I feel like I'm there again, that fork in the road.  But this time, I absolutely cannot trade my values to fit in.  I can't trade our experience for acceptance.  If I am quiet about it, I will be well loved.  If I continue to speak out, I will continue to be judged.  

Here is the truth.  I wish somebody would have been brave enough to speak to me before I had children.  I wish I had known the other side.  I wish people weren't scared to share their experiences.  If nobody talks, nothing changes.

Our world tells me I am selfish because it's my civic duty to protect the greater good.  For those who believe that, I would tell you that it is selfish to believe that you are entitled to the health of my children.  God placed them in my care.  That is not selfish, it is taking care of the children God blessed us with.  

I am still learning.  I am still trying to sort it all out.  If who you see is a 'crazy' mom, then please do us both a favor and click the *unfriend* feature on Facebook.  You don't need my posts to ruin your day and I honestly don't need the judgment.  Just know what you don't see.  The private messages, the children healing because of information other mothers (and fathers) have shared, the friends needing advice...needing support.  You do not see behind the scenes.  You do not hear the stories.  You have not met the children affected.  I have.

Even if my knees are shaking, I'm going to remain the geeky (is that word used anymore?) girl who stands by her convictions.  I believe I'll risk getting kicked off the Friends List.

  

A Little Bit of Happy

Just a quick update before we start school for the day.

1. Bry is gaining weight!  Can I get a Hallelujah? Woot! :)

2. I've realized we've had more good days lately, than bad.  His tics are so much better.  Even when he has a bad day, good days follow quickly after.

3. He is sleeping a lot.  I'm so thankful for homeschooling because today he slept till 10:30.  I've noticed that his sleeping usually correlates with tremendous healing.  I welcome that sleep!

4. B is reading so much now.  Every book he brings to me, he's able to read with some help for the really big words.  When I read to him, he's asking me to point out specific words.  He's reading over my shoulder.  Last night, as I was reading, he said, "Mommy, I found the word 'knocker!'  Um....knocker has a silent 'k.' How awesome that he found that word out of all the words!

And now a little update on Jilly.

1. She's still adorable as ever.  She's telling me her letter sounds and likes to count for me.  She also likes to 'write' books. Today she 'wrote' a musical about fruits and vegetables.  It was a hoot!

2. She's a little mommy and is always playing 'babies.'  Right now, they are lined up in the hallway in cradles, highchairs, strollers, and shopping carts.  She says she's having a yard sale.  Ha!

3. She's having some dental work done next week and will be sedated. :(  I'm not looking forward to it, but it's unavoidable.  We would certainly appreciate prayer that it goes smoothly and that there are no complications.


That's what is going on in our busy life.  I'm so happy with B's healing even in the middle of flu season.  I'm also thankful that the awful flu seems to have skipped over our family.  *knock on wood*  I'm definitely counting our blessings!  It seems the clouds have lifted for now and we are relishing the sunshine.

Midnight Conversations

"Mommy," whispers B, "I can't sleep in my room.  Can I snuggle you?"

It's a regular occurrence at our house.  It's almost midnight and B is wide awake.  He crawls into bed between his Daddy and I.

"Mom, how do they get pictures onto driver's licenses?"

"Well, first, you have to take a drivers test...."

"No, I mean how do the pictures get on the licenses?"

"Mommy, did you know crocodiles can't walk backward?.....I don't get tired like other people....Yawwwn."

"Sure, Bry.  You don't look tired at all."

"Mommy, can you scratch my back?  How do you get to be an astronaut?  Did you know that when a plant loses its color, it's running out of chloro....chlora....."

"Chlorophyll?"

"Yeah, Chlorophyll."

"Mommy, I'm hungry.  Can I have a snack?"

"You may have some almonds or a banana.  Then, you really need to sleep."

"Okay."

"Mommy, I love you to the moon, to all the planets, around the Milky way, to all the stars and back."

"Bry, I love you even more than that."

More than he will ever know....or at least until his own children are kept awake by the wonders of this word.     B's body sometimes has a hard time settling down, especially in a flair.  For the most part we've ditched the melatonin in exchange for midnight heart to hearts.  Why not?  School time is adjustable and these moments will not last forever.  When God led us to homeschool, He knew.  I fought it tooth and nail, hating the thought of letting go those school day dreams I had for him (or were they for me?)  I wasn't making room in my mind for the blessings that were to come.  My heart is full of gratitude.  Tonight I will be thanking my Heavenly Father for His loving guidance and faithfulness.

Hills and Valleys

Ups and downs.  Hills and valleys.  That is the PANDAS journey.

I sometimes find myself caught up in envy.  Yep.  I know it's wrong.  It's a sin.  Is it a sin to want some normalcy for my child?  Is it even envy?  A little.  I covet the little things families take for granted.

When B has a rough day, these little things are magnified.  Today, B is having one of those days.  A new tic. A very noticeable tic.  A constant grunt/hum.  By constant I mean every second until he falls asleep.  I can't imagine how exhausting that must be....and I'm so glad he is educated in an environment where he doesn't feel he has to suppress it.  I think that would be even more exhausting.  When B is affected, I am affected.  That bond between mother and child is a strong one.  Today, I feel like I'm walking around with my nerves on the outside of my body.  Today, PANDAS and food allergies get to me.  Today, I feel like it's taking so much from his childhood.  

Part of me feels bad for even blogging this because I realize it looks like a 'pity us' post.  It's not.  I don't know what it is...It's a yucky feeling that I need to type out because it's unhealthy to hold it in.  It's our reality.  I know there's somebody out there reading this and thinking, "I want a piece of their reality," because what they are facing is so much harder.  And that makes me feel guilty for even complaining.

I want to complain about the friends I've lost when I needed a friend the most....but this has shown me the beauty of the friends who have stayed by my side.  Friends who pray for us, help us, and truly listen to us without casting judgement.  Friends who are willing to, with love, point me in a better direction.

I want to complain about how much I would love to take B to a pizza buffet and let him enjoy every bite...but this journey has introduced us to wonderful, healing nutrition.  It has taught us about the link between autoimmune diseases and diet.  We may be changing our family tree.  Preventing more autoimmune illness by changing the way we eat.

I want to complain about how hard this is, swimming upstream...but this has taught me what it is to truly fight for something. And what it is like to depend on God for strength when I have none.

I want to complain about how unfair this is to B.....that's where I get stuck for moment.  It is unfair.  I would take it away in a heartbeat if I could.  But I can't deny this journey has formed some amazing traits in my little boy. He has tremendous self control, a strong faith, and empathy...a real concern for others.  He takes delight in the small things.  He is appreciative, kind, and respectful.

Today may be a valley.  As I began this post, the hill looked steep, but as I type, I realize I've been climbing the hill.  That's what this post was....an ascension.  God is good, even in the valley.