I Will Never Stop Praising Him

I've never liked the way it ended, this blog.  It stopped in the middle of the story.  I didn't know if we'd ever reach the end.  I wanted to know, to believe that there was an end.  B told me I should write on his blog again so I can help other kids.  So, here it goes:

Today is Sunday.  A normal Sunday...except it isn't, compared to almost five years of Sundays passed.  B sat in the church service with us.  His body was quiet.  His attention was focused.  I praised God silently as I watched him take communion. It is amazing what God has done for B, for our family in just a year.

Rewind to the night before our first appointment at Dr. Buttar's clinic.  B wanted to try out the huge bathtub in our hotel room.  I helped him get the water just right as he undressed.  Every one of his ribs showed.  His knee joints looked huge on those spindly legs.  He had no muscle tone.  I remember drawing in my breath and trying not to stress out.  Dr. Buttar had to get to the bottom of his inability to gain weight and his propensity to lose weight during every flare.  No matter how much organic, full fat food he ate, nothing would stick.  He was later diagnosed with a metabolic disorder.  Today, he is almost 10 lbs heavier and his muscles are developing.  He looks so much better.  We are getting his metabolic system under control.

As we drove to Dr. Buttar's clinic for B's first in office treatment, I broke down.  There was so much hope riding on this and quite frankly, I was scared.  I held B down for all his vaccines when he was younger.  I can't even drive by the pediatric clinic without my heart beating faster and guilt washing over me.  I try very hard not to relive those days.  The thought of B having an IV treatment terrified me.  I think a good amount of PTSD was involved and I couldn't stop the tears.  My fears were allayed in the months that followed.  Tremendous progress.  Every two months B has a treatment.  We measure his progress through a series of questions that are then translated to a line graph.  The progress we see in him every day does translate well to the graph.  From worry to elation.  His labs are looking great.  He is feeling great.  In fact, he is doing so well and his labs are looking so good, he may only have one treatment left.  We are staring the end of the story in the face.

So what about the food allergies?  Guess who ate real cheese on his pizza last night?  Guess who gets to eat at restaurants without bringing his own 'special' food?  Guess who ate his Valentine's candy this year?  Not the healthiest choice, not an everyday thing, but his body handled it well.  He still reacts to gluten.  Peanuts and cashews are out, of course.  Apples and oranges are still iffy.  But that is only a handful of foods, not 43.

What about all the PANDAS/PANS symptoms?   PANS caused inflammation in B's brain that resulted in symptoms of  autism and Tourettes Syndrome.  Most of those symptoms are completely gone.  The inflammation is under control.  He still has a few minor, residual tics that are mostly apparent to us, his family.  Nothing like the full body and vocal tics that were rapidly progressing before treatment.

A few days before I started this blog (four years ago!), we went back to my home town for a graduation.  B's behavior was erratic.  I could feel the stares of people thinking I couldn't control my child.  We spent the day with extended family.  He ignored them, didn't talk to them, wouldn't hug them.  I wanted so badly for them to look beyond his struggles and see his sweet, tender heart.  That is why I started this blog.  I wanted people to understand him.  Today, if you wait for his reply, you will glimpse that gentle nature.  He is full of hugs for his family.

Dr. Buttar said our next step is focusing on realizing we have a healthy child.  It's hard when you've put so much into healing, when your momentum has been so strong for so long.  B has had a few little flares that have made me doubt.  However, he bounced back to an even better baseline whereas before this treatment, his new baseline got worse with each flare.  Dr. Buttar seems to think that  B's body will take over and know how to keep healing with all his other body systems working well.  I believe him because that is what we are seeing.  The black cloud that has hung over our heads has drifted away, making room for the sun.

I have learned so much from this journey.  Anger, pain, confusion, frustration...they are all part of it.  If you are in the thick of it now, don't feel bad for feeling those things.  However, do not dwell there.  Don't pretend everything is okay, but do not immerse yourself in the sorrow.  I used to visit PANDAS/PANS pages and read with horror about children who lost the ability to speak at the age of 15, children who tried to commit suicide, children who lost the ability to walk, children who had to be admitted into psychiatric facilities.  My mind would drift to the 'what ifs.'  I wish my present self could talk to my past self.  I would look myself in the eyes and say, "They are not your child.  He is in front of you and he needs you to stay positive for him.  It will get better."

Always, I am amazed at God's guidance.  The only way I can describe B's journey is 'full of miracles.'  Every door God opened, every door He closed.  His goodness...  B has been granted a brand new healthy life.  God Bless Dr. Buttar, Nurse Practitioner Jane Garcia, and of course the physician who initially diagnosed and treated him, Dr. Baptist.

I will always thank the Lord.  I will never stop praising Him. -Psalm 34:1

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.