Sunday, October 18, 2015

Get the skeletons out of your closet and put them in the front yard!

Last week my sister and I went to a pumpkin patch and picked out pumpkin's with our kids.  There was a pretty nice selection, I'll admit.  Lots of sizes, cool shapes and even some neat heirloom pumpkins, yellow, rusty orange, red, white and green.  Only one of my kids was much into picking them out.  Yes of course, you might remember one of Storm's special interest's is decorating.   It's an all consuming type of obsession with everything having to do with decorating for the holiday.  Right now for fall, and basically since September, it's been a maddening, anxiety producing, can't stop thinking about how to rearrange lights, spider webs, skeleton's, tomb stones and now since the visit to the pumpkin patch--pumpkins.  I'm not sure how to explain the intensity of his obsession with decorating, but once it starts, nothing is going to stop him from working on his projects.  He wakes up talking about it first thing in the morning around 6:00 AM, and it's the last thing he talks about as his head hits the pillow.  Tonight, he can't even settle because he's thinking about how he will rearrange things tomorrow.   I've never seen anything like his kind of determination, effort and persistence when it comes decorating.  He will talk to strangers about it as they walk by our tomb-stone engulfed yard, he will talk to kids about it at the park, at church, at school; basically to anyone who will listen for even a second. Or even if you wont listen he will still tell you about his plans for adding a smoke machine and maybe some blow up decorations next year.  He will keep talking to you as you wave and smile and walk away, he still has more to say as you walk around the corner; he's never done on this subject.  He is always thinking about what he will do next, even if it's just rearranging the set up in our front yard.

Years ago I didn't understand these obsessions or even see them as such.  Mr. Shane, his favorite worker man, came to build our attic fan.  After which, Storm  referred to himself as "Me Shane,"  for literally two years and that's when all his "projects" began.   He would be the same "worker man" every day and would yellow-tape off my kitchen; as a:  WORK ZONE while I was trying to cook.   The WORK ZONE continually expanded until the entire main level was blocked off with caution tape and to be honest it was hard to maneuver around it.  After a few weeks of trying to be tolerant,  I though to myself:  "enough is enough kid, I need to have my  house back".  This type of upheaval and clean up of the "WORK ZONE" inflicted a melt down of epic proportions.   At the time, I simply saw this as defiance.  I now understand I was inflicting the worst kind of anxiety on him when I took down all his caution tape; because I think his special interests, which belong to him alone, give him a form of control that he doesn't have over anything else in his life.

He struggles with reading and writing and with school in general.  This year, because he is now in second grade, he is starting to get picked on at school.  He sometimes gets in the other children's personal space and makes a lot of noises and vocalizations; which second graders don't appreciate and don't over look like the kindergartner's did.  His mind is so busy, that he struggles to focus and he talks incessantly about things that many of his peers don't relate to and that don't interest them.   As his peers get older he is struggling to connect with them because they are maturing in ways he is not.

My son is brilliantly creative and incredibly persistent and can work like no body's business on the projects that he is passionate about.  His brain is moving at the speed of lightening, and his body at the speed of a tornado.  Watching him and listening to him talk so fast, makes me tired for him.  I want him to find rest and peace, yet he works tirelessly and anxiously; having to have things just so.  Oh, how he struggles to slow down.  It's taken years to see the world through his eyes and I'm still trying to understand him even now.  For every challenge he faces, he has many gifts that amaze me.  

He recently started to draw cartoon like characters.  I asked him how he knew how to draw them so well and he told me he saw a picture somewhere and that it stayed in his mind.  He said when he sees things in his mind, he remembers them.   Suddenly I realized that he has this visual memory and I think this is why he struggles so much with language and learning to read and write.

 I believe he has a vision of what he wants his Halloween-masterpiece-art-scape of our front yard to look like.  To him it's not just a mess of two months early plain-old every-day Holiday decor.    It's more than that, it's his expression, it's his vision, it's his creation, it's his art.  He loves it so much he wants to share it with the whole world.  He wants you to stop by and say "Wow, you really worked hard on it this year, that's amazing."  Or "Wow, that skeleton popping out of your Mom's garden pot really spooked me!"    He delights in sharing his vision with the world.

He and I used have conflict all the time, because my need to control and my lack of understanding super-seeded his need to create.  I thought being a good mom was equal to a clean and orderly house.  I thought his immediate obedience and listening to me the first time I said something, meant I was in control and thus I was raising a respectful child.   This respectful child would reflect that I was a good mom.   That's how it worked with my other kids, but that concept didn't work with him.  The more I fought to implement this ideal, the more Storm fought me.   The more I tried to make him conform, the more tantrums he had and the more unhappy both of us became.   I thought Storm's difficult behavior and tantrum throwing, said to the world "You are a failure as a parent!"  I allowed teachers and other's critical comments about him to reflect on me as a mom.

For those of you raising these strong willed, passionate, tantrum throwing kids.  Stop judging yourself right now.  You are doing the best you can in the moment.  First, I had to let go of these "ideal's" and "should's" I was telling myself.  That my house "should" be clean, and that I "shouldn't" have caution tape all over the place and paper towel roll skyscrapers in my family room.   I have never been a big fan of Halloween, and I don't like all the dark things associated with it.  I had let go of worrying that people would assume that Halloween was my favorite holiday and would therefore make assumptions and question my character, based on the shear fact that the outside of my home currently looks like  Harry Potter's Hogwarts and or a real cemetery.   I've had to realize that God's the only one I need to please.  Others are free to assume what they'd like, but God knows my heart and having skeletons all over my front yard might be better than having skeletons in my closet!

 I thought that Storm was the one with all the issues, but God often places him like a mirror in front of me, forcing me to see the areas in which I need to grow.  Why do I worry so much about what others think of me?   Why am I so hard on myself and expect perfection?  Why am I so uptight all the time and controlling?  Is it most important for people to see that I have a perfectly obedient child and praise me for being such a great mom in that moment?  Or is it better to have a child that eventually learns real coping skills and how to handle the hard things in life.  To raise a child who knows that I empathize with his struggles and knows that even if he fails, I'll still love him regardless, and that its okay to make mistakes and get up try again.  That I accept him as he is, with all his "stuff."  Isn't that what we all are longing for?  Unconditional love.

Things are not perfect, they are so far from it and I'm fine to keep it that way.  Trying to be the perfect Mom was really hard and really unattainable.  When I look in the mirror now, I see a woman who is learning one day at a time to be the best mom she can be for her children and that is good enough.  She doesn't have it all figured out, but she knows that God does and He loves these kids even more than she does. This woman is a real person, and she's far from perfect.  She makes a lot of mistakes, but when she does, she admits them and admits to her children she needs God's help.  She is learning to forgive herself and accept God's amazing grace, because when she does that, her parenting reflects this same kind of loving and merciful grace.  She recognizes that her kids are learning too, and that this thing called childhood is messy and it's meant to be.  It doesn't matter what strangers think she should do because a fit in the grocery store or at the zoo is a learning opportunity; not a means to impress the outside world with how good her parenting skills are, but an opportunity for a mom to teach her child what he needs to learn in that moment.

Maybe if we stopped putting forward our pintrest perfect lives and instead shared the real and genuine parts of ourselves, the parts that aren't so put together and photo worthy, then other mom's would know that they are not alone in their struggles.  Maybe we would start supporting each other and saying things like "wow this mom gig is hard!  I've been there too! I'm here for you sister!"  Maybe if we put the skeletons in our front yard and stop being ashamed of the things we struggle with; then others would start taking the skeletons out of their closets and take a step toward being more genuine.  Not one mom has it all together, not even the ones who appear too; parenting is hard work and parenting a challenging child demands the support of others who have been there and done that and survived!

My sister and I brought home our colored pumpkins.  We both had ideas of what they might look like on our door stop.  My sister's turned out, just as she expected.

Aw, isn't that so cute!  I love her creativity!

Now these are mine:  You can guess who decorated them for me.  I seriously did try to deter him from painting these ones so I could have a cute front porch too!  But alas, these are the results and they just make me laugh!  I hope you can find a way to laugh too!  You are not alone!  So get those skeleton's out, or come by and check out mine!

Thursday, October 15, 2015

Therapy Shoppe Review and Giveaway!

I am so excited to offer my first giveaway, compliments of the Therapy Shoppe!   Last week Storm and I were so excited when our Sensory Seeker's Kit arrived in the mail.  This awesome kit has everything he needs to keep his hands busy, and it is something he's been using at school and at home to help calm himself when he is stressed.  Click this link to view what is included in the kit:
This kit is "Created especially for sensory seekers and those who struggle with tactile defensiveness, this exclusive Therapy Shoppe® kit includes 7 fabulous tactile fidgets: a Brain Noodle, Tickley Tactile Ball, Fidgeting Fleece Bag, Spiky Pickle Fidget, Sensory Finger Squeezer, Squiggle Band, and a tin of Thinking Putty. Seven of your all-time favorite tactile fidgets that can be very helpful and effective for calming, focusing, self-regulation, and developing tactile awareness."

My son's favorite items are the Squiggle Band which is the pink bracelet at the top and the Thinking Putty.  The Squiggle Band is stretchy and can fit over his wrist and also can be stretched and provides some resistance.   He also uses the yellow circle a lot which is a sensory finger squeezer.    Storm also has some problems with fine motor and this is a good finger strengthener, if used correctly, only he wanted to chew it a lot and so I will need to order him some chewing jewelry next!  The yellow brain noodle is very soft and flexible and he enjoyed this piece as well.  The kit is just $19.99 and it's convenient because all of the items are included for you.  One of our goals for Storm after his hospitalization was to help him work on coping skills that he could use at school and at home.  One of the coping skills he found helpful, was that when he is stressed, he can have some hand fidget items that he can manipulate.  This is a great way for him to do that.

When Storm was diagnosed with ADHD last year, and started on medication, we sort of just forgot about all of his sensory issues, which he has had since childhood.  We thought maybe it was only related to the ADHD and once that was treated, the sensory problems would go away.  That has not been the case.   He is a Sensory Seeker, which means that it takes a lot more sensory input and stimulation to really get him to a calming place.  Kids like Storm have an extremely difficult time sitting still and listening.  

One of the other things he is also using at school is a theraband.  This is an exercise band placed around the chair legs, so that he can push and pull on it with his legs while he is sitting in class.  This helps feed his need to move constantly, while also giving him some pressure input on his legs while he is sitting.  Some children might like a wiggle seat instead, we tried this with Storm, but he didn't use it as much as the theraband.

Last year, as well as at the beginning of this school year, Storm was chewing his clothing and then started to chew his lip so much that he actually damaged his salivary gland.  The Occupational therapist told us that, much like a baby who needs a pacifier, Storm is trying to self sooth with oral sensations like chewing.   One thing that has been great for him is a whistle that doesn't make any noise.  I just found these blow pens at the Therapy Shoppe and they look like the perfect Birthday gift, as he loves art, but they would also give him that oral stimulation that is so calming for him.

I was impressed with how fast Therapy Shoppe got in touch with me and answered my questions via email.  I'm also impressed with the number of amazing sensory supports they have available, ranging from chew jewelry, which I hope to get next, weighted vests, blankets and  lots of amazing learning aids for visual motor skills (writing and holding a pencil correctly), as well as social skills stories and calming CD's for anxiety.

Overall, we loved the Sensory Seeker's Kit, as well as the convenience of Therapy Shoppe, which has all of the products we could possibly imagine for our sensory needs all at one convenient online location.

So how can you get in on this Sensory Seeker's kit Giveaway?  Here are the steps:

Leave a comment below about your Sensory Seeker.  Click the contact me link and shoot me an email with your contact information.  Lastly, like me on Facebook!

Good luck to all, please tell your friends, I will keep this Giveaway open until next Friday when I announce the winner!

Friday, October 9, 2015

Ode to our Challenges!

Welcome to Fun Friday!  This is my attempt at making you look forward to something fun each Friday, so you will come back for more and hang out with me.  Isn't that so creative of me?   One of my favorite Author's and Bloggers is Jen Hatmaker.  If you don't know her, pop over and check her out and her latest book "For the Love."  Every woman needs to read this book, to give laughter and rest for your soul.  I must give her creative credit, for she has perfected something called "Thank-You Notes," which each time I read, I nearly fall off my chair laughing.  We've all heard it said, laughter is the best medicine.  There is much truth to this.  So the following is my attempt to help us mom's who are dealing with unique challenges to laugh at the issues we deal with that the rest of the world may not get.  Be it health issues, allergies, sensory, learning differences you name it--these are the things we live with--so here I go, let me know what you think!

Thank-You Notes for My Girls in the Trenches

Thank you severe reflux for keeping my infant and me from ever sleeping, without you I would have been showered, cute and potentially thriving for the first two years of my son's life, not like I needed sleep anyway.  Thank you G-tube for giving me more gear to carry around than humanly possible--I love how heavy and cumbersome your Kangaroo pump was--naming you after a Kangaroo didn't make you any more fun to deal with!   Thank you Child Find for pointing out what I already knew was true about my child and for rewarding me with free preschool so that I could have a few moments of much needed quiet time, which I never dreamed was possible.  Thank you Occupational Therapy, for playing with my son for an hour so that I didn't have to install a climbing wall, foam pit, or inclining ramp in my own home..  Thank you Sensory Fidget Toy's for giving my son hours of chew-able fun so that his the pencil tops, t-shirts and his own lip could have a break from the constant chewing.  My clothing budget is eternally grateful.   Thank you dollar store sound devices for your ear piercing death-defying high pitched whistles, which reminds me to be grateful for a time before I had children and lived in complete silence.  I never appreciated it at the time. Yours truly, Why did the heck did the dentist put this toy in the treasure box?   Thank you noise canceling head-phones for making me have to repeat myself ten times before realizing that my son couldn't hear me anyway.  I love practicing saying the same thing over and over, and now I know how annoying my voice really is.  Thank you creative speech therapist for burning the image of the letter V,  as a warped V shaped Vampire with fangs trying to kill us.  Now my son and I will never forget what you resemble, though we still can't remember what you sound like, thanks for trying anyway.  Thank you Dyslexia and Dysgraphia for helping my son to write me a card which reminded me that I am a BASS Mom, this is way better than being the Best Mom,  I'm one step ahead all the other mothers and now I'm a great catch too.  Thank you food allergies, intolerance's and the like for making the entire world of children allergic to every food, so now we no longer have to be the only ones.  Obviously kids love pencils as Birthday treats more than food anyway, how did you know?   Thank you impulsiveness for helping my son do things before he has time to think about the consequences, you knew I needed to practice apologizing to neighbors, teachers, other parents and friends, without you, I would have more social engagements and free time than I could imagine.  Thank you hyperactivity for wearing me out every single hour of every single day.  I wish instead of living with me, you would empower me with the same energy, so that I could keep up with you!   Thank you emotional outburst and emotional dis-regulation for telling me "You are the worst Mom" and "You are the best Mom,"  within the same hour.  Guess what?  my self-worth is no longer based on your or anyone's opinion of me because you are so all over the place!  without you I would no know unconditional love.   Thank you ADHD for the boundless creativity and complete mess that my house is in right now because your hyper-focus has created more art than I can possibly keep up with; sincerely, lover of free art.   Thank you landscape yard rocks for your over abundance and lack of purpose, and for being completely free because you came with my house.  Did you realize that hundreds of you could be painted this many colors in a single day?  There is no end to stopping this so just go with the flow, you are more than a pet rock, you are a masterpiece, embrace your inner beauty!  Thank you Halloween and Christmas, for all your marketing which begins so far before the actual holiday.  By the time you actually arrive, we have already spent more money on decorations to satisfy my sons special interest's, that we have no money left to celebrate you, best of luck on Black Friday!  Thank you neighbors for allowing us to ruin the neighborhood with Christmas decorations in July and tombstones in our yard in August.  This is why we live where there is no HOA.  Thank you for believing my son really was decorating for Halloween early and that our yard isn't real graveyard (although we did bury some pets in the flower pots).    Finally, thank you understanding friends and family for embracing our child's strengths rather than weaknesses, and that reminding us that normal is just plain boring, compared to what we have!

Please share the great things about your child and what their challenges have taught you!

Hope you enjoyed this Fun Friday.  I am excited to announce that next week I'm going to have my FIRST FREE GIVEAWAY!   Please sign up on email so you will be able to participate in a Free gift from the Therapy Shoppe, a one stop place for your therapy and sensory needs!   I will be reviewing their product and I will pick one lucky winner to win one of their sensory products!

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Sunday, October 4, 2015

Let's Cuddle

Today my son smiled most of the day.  This afternoon he sat next to me and said "let's cuddle."  He really has the most endearing personality.  Those of you who know him know how sweet he can be.  Just a few nights ago I was crying and I told Matt, "I really miss him."   And it was so true, for the last month or so, he has been intensely different from the child who was with me today.  Sometimes, parenting Storm is like parenting Jekyll and Hyde.  Each morning, I wake up and I'm not quite sure what I will get.  Sometimes this is hard, I try my best to be ready for it, but sometimes it takes me by surprise.  When we have an extended period of stability, sometimes I get so comfortable with the boy that I had today, that I forget that the other side of him is there.  Or the opposite happens, sometimes, when we've had several weeks of roller-coaster emotions, non-stop energy, and low frustration threshold; it is a welcomed surprised when the boy who wanted to just "cuddle" came and sat with me today.

In that moment I just took it in.  I stroked his hair, he said "I love you mom, you are the best mom."  We tossed the football, and he didn't yell or get mad at the way I threw it.  He was patient with himself and with us.  He wasn't worried about anything today.  He wasn't very sad or angry or frustrated.  He was just a boy.  He rode his scooter.  He played with some neighbors.  It was mostly quiet.  It was a good day.  Tonight I'll just keep it close to my heart.  I know the Lord knew I needed this day.

At Church this morning we talked again about surrender.  About the book of James and how we should "consider it pure joy, my brothers, when you encounter trials of many kinds, knowing that the testing of your faith produces endurance."  James 1:2-4.  That true worship, is just that, surrender.  The laying down of ourselves.

God speaks to me so deeply through song.  Here is the new song of my heart, take a moment to listen. There is such freedom in this song of surrender, the words are so true and exactly how I feel right now.  I wept so hard,  in church today, I could have laid down on the floor and not cared if anyone was near me because in that moment, it was just me and my God.  Not a distant God that sits high in a cloud, somewhere looking down on me.  But the God of the Universe, the Maker of everything, The God Who Sees, The One who knows me in and out, and loves me personally.  A God that I am coming to know so deeply in the darkest of places as He has reached out to me, and walked with me through this pain.   I offered Him my tears; tears of praise to a God that is holding me in the midst of my pain, not because I am strong--but because He is!  He loves me, and He loves you.  If you are broken inside, as the song says, give Him your life; He will not fail you.

From Elevation Worship:
"Give me faith, to trust what you say,  That Your good and Your love is great.  I'm broken inside I give You my life... I may be weak, but your Spirit is strong in me, my flesh may fail, but My God You never will"

"You have taken account of my wanderings; Put my tears in your bottle.  Are they not all in Your book."  Psalm 56:8

Friday, September 25, 2015

Lord have mercy

How do I begin to update you on the where about's of my heart and the roller coaster ride of emotions I've experienced over the past few weeks?  For those of you who are just joining in, let me give you a little history.

Our seven-year-old Storm has always been a little bit of a handful.  I often say, "for the first twenty-four hours of his life he was the calmest baby ever".   Sometime around midnight on his first eve home, the crying started and it basically never stopped.    He was "colic," the doctor's told me, "he'll grow out of it".  So I waited.   First I had a colic infant, then a colic toddler, then a colic child.   He just couldn't sooth himself easily and he still can't. His emotions have always been extreme for the situation.  He's extremely happy, extremely angry, extremely sad.  He switches from high to low in a heart beat, and back again.   He goes from zero to sixty and this repeats over and over in the course of each day.  It's down right exhausting. 

Around the time he turned eighteen months or so, his tantrums got worse and started to last longer and longer.  He always had something to say, but his speech was very unclear; we figured that was what was driving his emotions.  "He's frustrated," the doctor's told us "because you can't understand him."  Like any good parent we enrolled him in speech therapy hoping this would be the solution.

Though he remained in speech therapy, the tantrums continued.  Our speech therapist recommended we see an occupational therapist for further evaluation since he could hardly sit still or pay attention during his fifteen minute speech sessions.  We did so, and were told he had a sensory processing disorder:  sensory seeking, they called it.   This made sense to us, because Storm was like a ball of energy.  He could literally, get up at 6:00 AM, ride his bike for three hours, go to the pool for four hours, come home and ride his bike for another hour, play soccer for two more hours and never get tired.  From dusk to dawn he was going going going; like a wind up toy.  So we added occupational therapy twice a week, plus a weighted vest for sensory problems, daily brushing, and a number of sensory diet exercises.  But the mood swings continued as did his endless amount of energy.

Enter kindergarten, and asking a child like this to sit still was like asking a bee to stop buzzing.  The school was calling me every other day about his behavior and him rolling around during circle time, bumping into kids in the line, and seeming like he wasn't paying attention or listening. 

We paid for a two day evaluation to rule out Autism, ADHD and other mood problems.  The testing center gave him an ADHD diagnosis and we were relieved.  He had a lot of Autistic like behaviors, such as the sensory problems and delays in his social relating, delays in his emotional regulation, very rigid and inflexible thinking and some restricted interests, but not enough to diagnose him with Autism.

We started him on ADHD medications and my husband and I took training classes on how to manage children with attention and behavior issues,  it was amazing for the first few months.  However, his behavior gradually worsened again.  He seemed agitated and angry so the doctor said he needed an antidepressant because irritability in kids is an indication of depression.    Reluctantly, I added this medication, but within a few months he was acting even more aggressive, he became combative.  He was hitting us at home, he was extremely angry, and at the same time extremely sad. 

He told me right after his seventh birthday that he wanted to kill himself.  When I was waiting in the car line at school to pick up my other children, he jumped out of the car and ran towards on coming traffic.  I tackled him in the school yard in front of hundreds of smiling mom's and dad's happily picking up their children for the start of Christmas break.   It was like the whole world slowed down, like a dramatic movie scene.    Only this was my real life.  I carried him kicking and screaming to the car and that night he screamed for hours before he finally wore himself down enough to fall asleep.    It was Christmas time last year, that I sat glazed over, in the psychiatrist's office feeling the shock of the words "he has bipolar."

I accepted this diagnosis, because I respected and trusted this doctor and because I was so desperate to help my precious son, I was so desperate for answers.  My son was literally climbing all over the doctor's office that day like a wild animal.  It was like he was lost somewhere inside that body, and it was a deeply painful and dark time.  Later I have realized that this worsening behavior has to do with his sensitivity to the medications.  At the time, it made him appear like he was bipolar.  We  followed the doctor's advice and started him on new medications for bipolar.  Like every other therapy that we had tried for him, it helped for a while and we had hope.

He seemed to do well again for about four to five months, but then all of his "behaviors" started to creep in, the irritability, the anger; what looks like purposely annoying his siblings:  getting in their faces, blowing raspberries, making lots of vocalizations, and obsessions with his special interests.  The doctor added a new medication and within twenty four hours it was like deja' vu of last Christmas. 

What I had most feared would happen did.   Storm became so out of control that we could not control him ourselves, he was hitting us, kicking us, spitting on us, calling us names.   If he had any curse words in his vocabulary he would have cursed at us, but thank God he doesn't know any bad words yet!   He was throwing anything and everything in his immediate reach.  After almost half a day of this and the inability to call him down; We called the police.  We had our seven-year-old admitted  to the psych ward at Children's Hospital and our hearts were broken.  

Though I have grieved over and over, the many things I have had to let go when it comes to accepting Storm's challenges, I cannot begin to explain how scary it is to see your beautiful child suffering in this way.  This night, it was as if my own heart was ripped out of my chest.  This feels like too weak to stand, too hard to breath sort of pain and desperation.  It's the kind of face on the ground, laying prostrate before God, gut wrenching cry "Lord help me."   I could hardly muster the words through the gasping, deep chest, heaving weeping I did that night on the floor of my bedroom.   I've cried out to God many many times concerning this boy, but this night I would have given my life in exchange for his freedom from whatever holds him captive.

He is still currently in the Day Treatment program at the Children's Hospital.  This a step down unit from the inpatient treatment.  He has nurses and a counselor, an occupational therapist and a doctor.    I've been told that he was on perhaps too high of a dose of this last medication, as well as the wrong medication for him.  The Children's doctors do not think he has bipolar, and how I do hope they are right; but I will now hold loosely to any diagnosis from here on.  The label doesn't matter, I just want to get him the help that he needs. 

We are finding through this process that he does have quiet a few developmental delays including several learning disabilities, which makes sense that all of his behavior issues peaked at the start of second grade.   Several doctor's and nurses feel that he really behaves like a child on the Autism spectrum, but for some reason, doesn't qualify for this diagnosis.  That is a topic for a separate post, but if Autism is really a spectrum disorder, than it would seem that he is somewhere on this spectrum, even if it's at the end of it.  

The doctor's explained that children with neurological differences often respond much differently to medications than their typical peers.  This makes a lot of sense to me; as Storm has had more agitation with the stimulant type medications for ADHD.   The doctor's feel very strongly that he does have ADHD, sensory integration issues and a mood disorder.   This poor child has a lot of things he has to overcome each day to simply function.

We just finished his second week in the hospital and the progress is slow.   I feel relieved that we are in a place with people monitoring Storm's reaction to the medications, more testing is being done, and we are learning strategies to manage his sensory issues and the extreme anxiety they cause.   I have walked through one of the darkest places I have ever been and I still do not have all the answers.   I am still learning.

I'm gonna just come clean with you all.  Last year when something similar happened, my first reaction was the opposite of crying out to God.  I searched the internet, I went into "fix it" mode as I often do, and I researched and called doctors and therapists and tried everything I possibly could to help my son.  For seven years I have known something was unique about him.  I have known that he is different from my other children, I have known that he struggled with things that his peers did not.  I have been searching for answers for years.  We have tried, speech, OT, gluten free diet, GAPS diet, supplements, weighted vests, exercises, medications and the like.   The things that helped my other son did not help Andrew and this did not make sense to me.

 I have left no stone upturned in desperation to help my son.   If you just got a diagnosis, or if you are in the darkness right now, I first want you to know that you are not alone.  I know how you feel, I know the desperation of a mother who wants more than anything for her son to just be an average little boy, who is happy and care free.  It is so painful to have a child that is angry; screaming that he hates you, hitting you day after day.  It is so painful to see little glimmers of that child's sweet personality for a day or a week and know that that sweet happy child is somewhere in that body; but as soon as you have a glimpse of it, it's ripped away from you.  It feels like your child is dying every day and you grieve it as such.  And grieve we must, as this is part of the process of finding our own healing, which I will discuss later.  I have a sweet friend who frequently grants me permission to grieve and reminds me that it's okay to go through those actual stages of grief: Shock/Denial, pain/guilt, anger/bargaining, depression (reflection/loneliness),  reconstruction/working through, acceptance/hope (

Wherever you are in these stages, I welcome you here, this is a sacred place.  You will not be judged here, you can be angry, you can cry, you can share your pain and know you are not alone. I am relieved right now that my son has Autistic like features, it really explains a lot of the funny things that he does, like obssess about tornadoes and firecrackers and graffiti.  Why would a seven year old care so much about graffiti; desperately searching for ways to draw certain letter styles when he struggles still with the actual alphabet?   He has a love for working with his hands and especially decorating.  Give this boy an occasion and he will decorate better than Martha Stewart!  He's got skills that would make her blush! 

Had you told me he was slightly Autistic several years ago, I would have been devastated, but I have come full circle to a place where I am no longer desperately trying to fix him.  As my dear friend Rebecca says about her son with PDD-NOS, he's NOT BROKEN!   This is how God made him, rain or shine, sunny or cloudy, up and down, my spicy sweet Storm.  He is my answer to a desperate prayer for a son. And God is not about to give up on him or I now.

Believe me, I know we have a mountain ahead of us.   I know it's not going to be easy.  I know there are going to be a lot of mudslides and treacherous terrains.  Yet I have found freedom in letting go as I was literally forced to, when I left my son on the psych unit last week.  God took back what was already His; what I had dug my heels into and said "Not this part of my life, this is MINE!"  I finally came to the end of myself, the end of my resources, the end of my solutions, the end of my, "but Google said this was what I should do".  I fell on my face and I cried out utterly destitute: "Lord, please help me. Lord have mercy on me and my son." 

And in that moment I found peace.  Nothing about my circumstances changed.  But I changed.  I let go of my striving to control, fix and manipulate the outcome of my situation.  I let go and I let God be God, cause guess what--He is a way better God than me!  I'm not a quick learner and I'm new to this letting go thing, but I don't intend to go back to the old way.  It was full of pain, and stress and agony and disappointment.  It was full of despair and fighting to have something I could not obtain.  This boy is God's boy, He made him and He made me to be his momma.  I know I can't do this on my own.  I desperately need God's help and the help of those God has put in my life.    I am done fighting, I am done striving.  My new posture is prayer and surrender; the result is a peace that can only come from  a God who never changes, not my circumstances. 

In my next post I will discuss "Caring for the caregiver," and ways those of us taking care of chronic kiddos can attempt to stay sane! 

Wednesday, September 23, 2015

Henry's Story--a summary

Baby Henry was born on May 21, 2009 and shares a birthday with his oldest sister Hannah.  He was, as she puts it, her "Birthday present." He certainly is our gift from God. God has used him, since his conception, to bring us to our knees and teach us to TRUST God's plan for our lives.

Henry was our first child to be born with hair and lots of it! He has a full head of jet black hair and is truly the cutest thing ever.  For the first few days of life he had the most quiet disposition. Then he started screaming.  He screamed night and day. After a few days of this, I started thinking, " I think this is more than just colic".  I asked our pediatrician to put him on reflux medications, since our first son had severe reflux; and also because not sleeping EVER, gets old very quickly.  The medications seemed to work for a while.  However, every time we attempted to wean Henry from his medications he would become fussy again. 

Between three-and-a-half and four months of age he started to have a rattle sound in his throat.  Every time I picked him up, I could feel this rattle in his chest. It seemed like he needed to clear his throat but he couldn't.  His voice was sort of hoarse. It was kind of cute at first, when he started making noises, because he was enamored with the sound. He thought it was funny and would coo in his raspy voice.  But it never went away.  And then the symptoms got worse.   His nose was congested with severely thick mucous which I had to suction out of him several times a day.  I started to worry that he had cystic fibrosis or some immune system disorder.  We went to the ENT and our pediatrician put us on antibiotics.  The ENT doctor sent us to the GI doctor who attributed his problems to reflux and increased his dose of anti-reflux medications.  Yet nothing changed.  Out of desperation I brought him to an allergist, yet everything came back normal. She suggested I try to get off of all milk products including casein and whey to see if this helped. It seemed to help a little so I stayed on the diet, but he continued to have respiratory issues.

After months of this I began to feel helpless. I went to doctor after doctor and no one seemed to have an answer. Henry was put on breathing treatments because he was wheezing with every feed. However, he continued to get worse.  Also Henry had seemed to stop growing and was looking more pale every day.

In January Henry had a swallow study in which they watched Henry eat and drink under fluoroscopy. Finally, what I had suspected all along was proven.  He was aspirating.  Every time he drank thin liquids a little bit of milk went into his lungs.  That's why he was wheezing and so congested. His body was working overtime to try to protect his lungs.  I felt a sense of relief in finally knowing what was wrong with him. Yet at the same time I felt so angry that the doctors failed to listen to me for months and that it took so long to get a diagnosis.

It took a whole month to schedule a bronchoscope with the pulmonologist and ENT Doctors.  The bronchoscope revealed why Henry was aspirating.  He had a rare birth defect called a laryngeal cleft.  There is a small connection between his airway and his esophagus which allows the liquid that Henry drinks to go into his lungs.   He was admitted to The Children's Hospital for failure to thrive. At first we stayed for one week.  They sent us home telling us to thicken his feeds. We tried this but he continued to cough and choke and we were re-admitted the next week for a scary choking episode he had at home.  We ended up staying in the hospital for a total of twenty-five days.  They ran tons of test on Henry and it was one of the darkest times I've faced in my life.  I felt so alone, and so isolated in that hospital room.  I was separated from my other children and from my husband and felt disconnected from the outside world.  As a nurse, it gave me great insight as to what people go through who are in and out of the hospital with a chronically ill child.  It is the hardest thing I've ever experienced.  Worse then the isolation was the pain of watching my baby suffer through all the tests, sedation, IVs and blood draws. It broke my heart.

Even after being on steroids and thickening his feeds his lungs did not improve.  Finally the gastrointerologist placed a PH impedance probe.  This is a probe that went in Henry's nose and was in place for twenty-four hours.  It showed that he still had severe reflux and that while the thickened feeds were easier to swallow; after he ate, much of the food refluxed back up into his esophagus and potentially was aspirated later through his cleft.  The doctors suggested he have the Nissan fundoplication procedure and G-tube placed.  This was one of the most difficult decisions we had to make for Henry.  The Nissan is a procedure in which they wrap a portion of the stomach around the esophagus to tighten the esophageal sphincter so that liquids and foods which are swallowed cannot come back up.  In a baby this means they can no longer throw up or even burp on their own.  That is why it is necessary to also place the G-tube, which is exactly what it sounds like.  It is just a tube that is connected to the stomach through which you can feed the baby liquids and also open it up and allow the baby to burp or even vomit if necessary. 

The day he had the surgery was the hardest day I've faced yet. He was under anesthesia for three hours. Those of you who have had a child go under for any length of time, know what this is like. I prayed constantly and I was so worried for him. He came out fine and slept the whole night. I looked at the tube in his stomach and wondered if I made a mistake. I knew we didn't have any other choice, but I cried and cried over the decision to change his body this way.

In an effort to help Henry gain weight the doctors had me mix formula with my breast milk and put it through the G-tube.  Henry didn't seem to be gaining much weight or tolerating feeds well.  He would frequently wretch after feeds and have to be vented (this is when you let excess air out of the G-tube).  I felt that the G-tube was actually making things worse.  After a 911 call on his first birthday after he had a small bite of cake, the ENT doctors told me I couldn't feed him any more by mouth.

As soon as Henry turned one I started making my own G-tube feeds and stopped giving him formula.  Looking back I see that my G-tube formula was not too far off from the GAPS diet which you can find out about via the links of the right side of my blog.    I wasn't satisfied with the ENT's statement to not feed my son and that "I'm not sure if he will ever be able to swallow like a normal child."  I vowed to get rid of the G-tube as soon as possible.   

In August of 2010 we went to Cincinnati Children's to have Henry airway scoped and have his laryngeal cleft repaired.    However, to our surprise, when they scoped him, they found that he did not have a type one cleft as originally diagnosed at Children's in Denver.  Instead, they said he had a deep notch which like a cleft, could be contributing to his aspiration when he becomes more inflamed.   All his respiratory symptoms had resolved since I had placed him on what I call my "miracle grow" formula.  They told me to go home, remove the G-tube, and start feeding him solids by mouth.  We went home and slowly increased solid foods, as at the time he was living solely on my home-made thickened formula.    Eager for him to gain weight,  I started adding all sorts of foods into his diet.  I gave him everything soft and then progressed to more textured foods.  I did not limit him, I was focused on calories.  Now knowing that he did not need airway surgery, I thought of nothing else except getting him to gain weight.  However, after a few weeks of eating, all his breathing issues returned.  He was congested and his throat sounded just like it did when he was aspirating and swollen.  I was perplexed--if he didn't have a cleft, what was causing the inflammation.  Also, I realized that he was having more diarrhea again, which never really went away, but seemed to be worse now.   Then he started wheezing and needing Albuterol again.  I went to the pediatrician and she was also confused--was there something that they missed?  And why was he still not gaining weight? 

In January of 2011 Henry's new GI doctor diagnosed him with FPIES which stands for FOOD PROTEIN INDUCED ENTEROCOLITIS SYNDROME.    It seems that Henry reacts to the proteins in foods and when he eats the wrong things this wreaks havoc in his gut.  This explains the trips to the ER in times before when he would go limp after vomiting, but the doctors never made the connection with food intolerance.  We began an elimination diet to try to figure out what foods he can and can't eat.  At the time, Henry was still aspirating and could still only drink thickened liquids, nothing thinner than honey, our ENT said it's possible that his swallowing issues are related to FPIES.

Henry was never behind in his developmental milestones so there was no other reason for his swallowing problems.  The doctors wanted us to trial him on a restricted diet and re-test his swallowing in March of 2011.    When March came around I called the aerodigestive team at the hospital and told them I knew he was still aspirating.   By that time I had learned all Henry's aspiration symptoms far too well.   He would constantly sound like he had something stuck in his throat, like he needed to cough or clear it.  His chest would rattle after eating or drinking, I knew I needed more time.  I had been doing the elimination diet for only eight weeks at this point; in my mind, it took Henry more than a year to get as sick as he was, maybe he just needed more time to heal all the inflammation in his gut and airway?

We cancled the swallow studies and scopes.  I pressed forward, keeping Henry on only a few foods, basically, chicken, rice, his thickened Hemp milk formula and squash and carrots.  Around the time that he turned two years old his throat was starting to sound clearer.  I started thinning his drink.  About 6 months after starting the elimination diet,  I gave him a glass of water, for the first time in his entire life, he drank a clear, cool drink of water and he didn't choke.  He said "yummy."  I bet! 

And we didn't look back.  I actually never had them do a repeat swallow study, because it was so obvious that he was completely fine.  The weeks went by and he drank Hemp milk and water without thickener and he did  not cough, he did not wheeze.  It was a miracle. 

I have to confess that again looking at calories, I felt that I had to add more as he was not gaining weight and truth be told, I might have added in more things to his diet faster than I should have.  He seemed okay, and I was keeping him off of gluten but I starting making a lot of sugary type foods in an effort to get him to eat.   Around Sept of 2011, he started getting rashes around his mouth and he was still having weird diarrhea that wasn't completely under control.   Again, I was so happy about his respiratory and swallowing issues being improved that I wasn't quick to try to eliminate things again.  I couldn't help but wonder, with him eating so many things, why he wasn't gaining any weight. 

Oddly enough about 6 weeks or so after the diarrhea became worse again I brought Henry into the ER for severe stomach pain that had him curled up in a ball and crying for almost 12 hours.  He had a complication called intussusception, which is an emergency and has to be fixed right away before the bowel starts to necrosis.    They performed a horrible procedure called an air enema to straighten out his intestines and thankfully he didn't require a surgery.  I asked the doctor if this might have to do with his FPIES, I wasn't surprised when they answered "we really don't know if there is a correlation"   However, it is interesting to me that FPIES seems to cause inflammation in his entire gut from mouth to anus and intussuception is caused by possibly virus' or inflammation or other causes that doctors don't really understand.  I personally, think that something in Henry's diet again was not working for him and that lead to the intussuception. 

Two weeks later Henry started having blood in his stools, and I rushed him back to the ER but he did not have intussuception again thankfully.  His appetite continued to decline until he would hardly eat anything and days went by in which I was desperately just trying to get him to take in fluids.  I decided I would need to do something soon, as he had already lost one and a half pounds.   At 30 months old he weighed only a little over 23 pounds.  I could see his ribs and when I picked him up he felt so thin.  I brought him to the doctors again, but they had little suggestions other than to put him back on Prevacid, the reflux medication that he had been off of for a year.  I asked why would I put him on this if he wasn't having any reflux symptoms?  The doctor just said to try it, since they didn't know why else he was refusing to eat.  
 We went to Cincinnati Children's Aerodigestive clinic and Henry had scopes done by the top ENT, pulmonary and GI doctors in our country.   Miraculously they told us that Henry did not have a TRUE laryngeal cleft but merely a grove, after a few months of not eating by mouth at all, they did a swallow study and gave us the okay to take him home and to start SLOWLY weaning the thickness of his liquids.

Though Henry's lungs looked better after a few months of not eating or drinking by mouth, he was still incredibly small and the doctors were concerned about his growth.  The nutritionist told us to start adding more foods into his diet and to butter on everything and even try cream.   Desperate for Henry to gain weight I did exactly what she said, I put half in half in his G-tube and within moments he was violently retching.  I  assumed it was just that he wasn't used to the fats, I didn't realize he was reacting to dairy.  I continued to give him things like toast with butter, waffles and anything that seemed fattening.  He was eating but not gaining anything, he was having profuse watery diarrhea each day.   Also, all of his symptoms that had disappeared when we started my homemade G-tube feeds had returned.  The silent refluxing, gagging, mucous in his throat, the coughing, the hoarse voice, wheezing and difficulty breathing, all the symptoms returned in earnest.  The GI doctor looked at Henry and asked me, "Is his abdomen always this bloated?"  I proceeded to tell him that yes, it had always been that way, it would be worse a few hours after certain foods, I explained how he retched and sometimes became limp, pale and clammy and how no matter what  I did he had profuse watery diarrhea every day.  The GI doctor told me that Henry had something called FPIES, or Food Protein Induced Enterocolitis Syndrome. 

A light bulb went off in my head.  Henry had never had a true laryngeal cleft.  He had always had severe reflux, and aspiration.  His airway was inflamed, his abdomen was distended,  His entire GUT was inflamed.  The GI doctor told me to try an elimination diet, to start him on NEOCATE for a few weeks and then slowly add foods back in to try to figure out what foods were causing his symptoms.   We tried NEOCATE but by the third day his belly was swollen and hard and he was crying and in so much pain.  I decided to stop the NEOCATE, no matter how hypoallergenic it supposedly was, it was hurting my baby!  I modified my homemade G-tube formula and  took out all the high allergen foods from his diet.   Within several days all of the aspiration issues resolved.  He still could not drink clear liquids, but after six months on an elimination diet void of gluten, wheat, and corn, I was slowly able to wean the thickening agent out of Henry's drinks.  One month after he turned two years old, he took his very first sip of water.  He drank it, he didn't choke, he didn't cough, he didn't turn blue.  And that was it, he wasn't aspirating anymore.

The final piece was Henry was STILL having diarrhea and he was not growing.  For several months I had been reading about a specialized treatment called GAPS, a diet designed to HEAL and SEAL the gut.   When I read the book, I knew this was the missing piece to our puzzle.   Though I was afraid to eliminate the small amount of food Henry was eating I was determined to actually heal my son, once and for all.  After all we had been through what could I have to loose?  So we started our GAPS journey.  The rest is history.  Literally.  The only reminder of the old days, is a small scar where Henry's G-tube used to be.   If you want to find our more about GAPS please check out the link on the right side of my page and be sure to join GAPS kids for support.