When Life Isn't Easy

When our older son regressed at 2 years old in a single day we had a very new world introduced to us. When our younger son couldn't sleep, couldn't stop crying, and was throwing up all of his meals as an infant, we have a very new world introduced to us. But, eventually, we felt we would understand the new world, get used to how it worked, and the heartache would lessen because it would become our new normal. Eventually even hard becomes your routine so you don't have the constant ache of the newness.

The problem with that thought is ... life doesn't work that way with special needs.

Photo Credit

What we thought was a one time regression, was just the first of many regressions our son would have throughout his life. We didn't realize he would learn to add, subtract, and write only to lose them in the blink of an eye. We had no clue he would learn to pay for his little toy he had saved up for only to not understand what that process was overnight. None of this was explained to us and I never read it on a blog, website, magazine, or medical journal. This keeps the heartache fresh. Just as you finally peel off the band aid from the wound, it's like you hear "not so fast, friend" and it starts to hurt all over again.

When our younger son got older we felt he would grow out of some of his anxiety and other issues that seemed to have plagued him since he was a few days old. When he got his feeding tube we figured this is as bad as his eating will get. We got this under control. We didn't realize after a year on the tube we would put a child to bed after a small supper and a small tube feed and wake up with a child that needed 100% meal replacement because he wouldn't eat a single bite. We didn't know. No one told us it could cycle that like.

To make it all worse, most doctors don't seem to grasp any of this. You go to them in a state of shock and sadness to ask for their help and they tell you they haven't ever seen this or, they have seen it and have no idea what causes it. They send you home to deal with what they, as medical professionals, don't even know how to deal with themselves. You, as a parent, are supposed to know what they haven't been taught.

Photo Credit

It's a hard place to be, and it doesn't seem to let up for so many. It's also a situation that is foreign to most people in our world. When you grieve, have heartache, or have pain, it's usually for a time, for a season. You lose a loved one and are stricken with sadness, but you eventually move to a lesser and lesser amount of pain as you carry the wonderful memories of that person and, if you are a believer in Christ, with hope. But, when you live a life where you start to get your feet under you finally after a huge shock or loss, only to have the rug pulled out again and again, that point doesn't seem to truly come.

What can you do? 

Here's what I have learned:

1) Allow yourself to feel the pain - No, don't live in it. Don't let it consume every part of you. But allow yourself to feel that initial grief, sadness, pain, frustration, and whatever other feelings come. 

2) Find your strength - MY strength comes from my faith, my deeply held belief that there is a God, a Creator of all, a lover of souls, a Savior, a comforter and friend. Honestly, without that, there are days I would completely crumble. I have seen miraculous things and my hope is in one who cannot be changed or destroyed. 

3) Accept this is your new normal - Eventually you have to say to yourself, "OK, this is where I live" and learn to navigate it. You have to. If you want to thrive, you MUST. I know it stinks. It's not where you wanted to be, but reality is ... it's where you are. You have to deal with reality. 

4) Accept that your new normal might change at any minute - I hate change. I like knowing what's coming over the horizon. Yeah, well, joke's on me. I live in an environment where the child I put to bed is often very different from the child I wake up with in the morning. So, I have to take each day, each moment, as it comes. I have to look at a situation and say, "wait, is this a new normal again or just a temporary hiccup". Then I make a battle plan and move forward. The enemy is moving, living, and changing, just like in a war. You have to allow yourself to change with it. Period. 

I would love to say I have this down pat. I don't. I cried to my husband this week that it wasn't fair and was too hard. He held me and told me he knew and understood. He didn't tell me to "allow yourself to feel the pain, find your strength, accept this is your new normal ... " He just held me and let me cry. But, eventually I start to move forward with it, I do work to move to a healthier view of what's happening, and I make a new plan to help my kids. Honestly, I am so grateful to have my husband beside me, and even more thankful I have a Savior that loves and strengthens me because I truly don't know how I would make it another step some days without it. 

Photo Credit

Short and Sweet

12 years old.

1 year from 13.

365 days from the teen years.

Add in Autism.

It is already kicking my tail.

That is all.

Autism Awareness Month - Day 18 Resources

I have so many resources related to issues involved with Autism. I wanted to share a few with you on this post, more will be coming later.

ONLINE SUPPORT:

Recovering Kids Biomedical Group

Warrior Moms and Dads

Christian Special Needs Homeschoolers

TREATMENT:

Sally Lloyd Homeopathy

Homeopathy Support

BOOK:

Homeopathic Self Care

Autism Awareness Month - Day 14 Our Story - Final Installment

If you are just now joining us, please take a minute to catch up on our story thus far before heading into our final installment.

Part 1
Part 2
Part 3
Part 4
Part 5

Photo Credit

We left our last installment with a big question: NOW WHAT?

The first thing I did was play with my son. He was so young, structured learning would come later. I took him for walks, Daddy took him for long walks, and we just really got into nature and our world.

I also was in super research mode. I wanted to find good learning techniques for a child on the spectrum. But, during this research, I came upon people who talked about healing and Autism. Many weren't saying cured, just feeling better and getting skills back. This interested me so I ventured down that path. Again, I was taught news terms like biomedical, DAN (Defeat Autism Now), supplements, and more. This sounded too good to be true and I figured my husband would think I went off the deep end, but I figured I would present it to him.

Not only did he not think I had gone batty, he was fully on board before I was even convinced. He said it made sense to him. I found a group that had local Moms with kids on the spectrum and began to ask who we should see. One name kept coming over and over, so we chose him and made an appointment.

This M.D. spend a great deal of time with us asking so many questions. I walked out of that first appointment mentally exhausted. He didn't care about the labels as much as he cared about the symptoms. I liken it to a broken bone. If I tell you I have a broken bone, you know very little. You have no clue what bone is broken, how severe the break is, how long ago it happened, how much pain I am in currently, etc. You need to know more. We walked out with a few tests we needed to do (urine collection) and he drew a bunch of blood from our son.

We also walked out with one prescription. He said he normally waits for labs to all come back because he needs to see what's going on inside the body, but our son's symptoms screamed a need for B12. He prescribed MB12 injections to be given twice a week. We went home, waited for the script to come to our mailbox (we sent off to a pharmacy for them) and I got brave and gave him his first one. We waited for the labs to come back (took 2 weeks for some and 4 for others). During that time I kept giving him his shot.

10 days after starting his shots he was 24 hours past his 3rd shot and he and I were in the living room puttering around. He was at the sofa and I was sitting in the chair across the room. Out of nowhere I heard a voice. It was my little dude. He looked in my general direction and said, "Can we take a picture of that". It's like time stood still.

Did he just speak?

Did he really just speak a complete sentence?

Am I asleep and dreaming this?

If so, can I please not wake up?

It finally hit me that my son had just spoken, but I still wasn't sold. I asked, "what did you say?"

He said, very slowly, like I was an idiot that didn't understand the English language, "Can ... we ... take ...  a ... picture ... of ... that". He then looked across the room at an object (can't remember what it was) sitting on the end table.

I about hit the floor. My baby boy had just spoken. Not only did he speak, he spoke a full sentence and it made sense. I couldn't get to my phone fast enough to text my husband (yes, we used pagers back then). I needed him to call me immediately. I needed someone to share this with. He called me back and I think I screamed into the phone what just happened. He was shocked figuring I had just kind of misunderstood. I told him wait until he gets home.

He got home and my son turned and said, "Dadddyyy" when he walked in. That was it. He believed me. We told no one what we were doing. But through that week we would see various people in our lives and our son spoke in front of them. I remember my Mom looking at him and back at me many times and her say, "what did you do? what did you do?" Ha ha. We told her what our doctor had done. It was amazing.

We have been using biomedical interventions for over 6 years now. We have changed doctors a few times as our needs changed or our need for a more skilled doctor changed. But, one thing hasn't changed and that's our son's improvement. He's slowly but surely feeling better. We have lost almost all constipation, his eating is starting to improve, his eye contact is nearly normal, he engages at will and purposefully, he's reading and writing, he loves to draw (and is very talented in that area), and he feels a lot better. We have a long way to go but he has come further than I ever imagined that day when we lost him.

Through all of this I have learned a few things.

• This is the hardest thing I have ever gone through. There are no words that can explain what it's like to have a child who is not healthy. We were blessed with two children, but we also have two kids with medical issues and special needs. The term roller coaster is nothing compared to what we have ridden. 
• This has taught me more than anything else I have ever gone through. I had to reach down to levels of myself I never knew existed. I had to learn about strengths I never knew I had and weakness I wish I could have kept hidden.
• When so many marriages break apart with even one child with special needs, ours has grown stronger. Oh, believe me, that wasn't easy. There were lots of short tempers, gripe fests, and tense times. But we came out on this side of it better for it.
• I have learned more about God than I did the first 30 some odd years of my life. I have deepened my faith and passion for God because, honestly, there were times (days, weeks, months!) where His strength and His mercy were ALL the kept me going because all of my ability had been used up. The Bible verse that states, "I can do all things through Christ which strengtheneth me." (Philippians 4:13) is not just a pretty saying to put on a wall hanging. It holds so true and is never felt more deeply than when you have NOTHING left to give. 

I hope you have enjoyed this short series on how we came into this world and are now living in this world we call Autism. It was a ride I never wanted a ticket for, but one that has proven to mold us and shape us into the people we are today. I wouldn't wish it on anyone, but am glad to know I have fellow Autism parents who understand. I hope I can be that to at least one person during my life. 

Autism Awareness Month - Day 13 Our Story Part 5

If you are just joining me, head over to the first 4 parts of our story to catch up to where we are at right now.

Part 1
Part 2
Part 3
Part 4

Photo Credit

Decisions, decisions, decisions. If I thought it was hectic before Autism, it was triple that now. We had to figure out how to find a developmental pediatrician, meds, therapies, and wort of all school.

I started with the doctor. That seemed the most logical choice. I looked online and my husband and I found a child study center that seemed to have good ratings and also took our insurance. We made an appointment, took Charlie Brown in, and spent hours working with the DP. We came out knowing what we knew before, he definitely had Autism. Now we just had the formal diagnosis and a piece of paper stating that fact.

Second was the meds aspect. My husband and I discussed it and neither one of us wanted our very young child on the medication that the Neurologist prescribed. I tossed the piece of paper. We knew we could always get a new script if we changed our minds. But he was just so young.

During all of this time we had our second son and wow, what a whirlwind that turned into. With his issues from his second day of life until then, we were wiped out. Our brains were far, far, far from fully functioning, and we were tired from our older son's constant needs on top of his new brother's constant needs.

Here's where that comes into play: our decision, even before we were married, was to home educate any kids we had. We talked about it a lot before we said "I do" and had talked about it a lot while trying to have children. But with Autism thrown in the mix, we were told by our Neurologist he needed PPCD (public school preschool for special needs children). We were told this is what the next step was. I cried as I let go of the dream we had for our kids. My husband was so disappointed. But, we called the school to figure out what we needed to do to start this process. We started hearing terms like IDEA, FAPE, IEP, PPCD, and the list goes on. We learned that a medical diagnosis is not the same as an educational diagnosis and we would have to go through a lot of testing for our son during this process. We signed the papers, bought him a little backpack, school supplies, a cute little jacket, and lunchbox, and I walked him into his class on that first day hating every minute of it. Oh the teacher was kind with a sweet smile greeting him at eye level. The rooms were cute and welcoming. The other kids were excited for the new kid that had just arrived. The cubby he would use had his picture on it and his name. It wasn't that. It was that my dream and plan to educate him myself was shot out the window. I was confused. God had given me this desire only to know, before the desire was there, that it would be ripped away. Why even tell us to do this when you know it won't happen?

We went through the testing (by the way, he had Autism - LOL), had our ARD, and moved forward with school. Each day I took him to class, each day after lunch I picked him up from his little class. I would ask him what he did in school, he had no clue how to answer me due to his Autism. I watched him in class and it was fine but not like most think of when they dream of their child going to school I wasn't pleased with everything they did, neither was my husband, but what could we do? It wasn't like they were hurting him, being mean to him, or doing anything unethical. So, we just dealt with it.

Then, one day, I picked him up from school, put him in his car seat, started the 5 minute drive home, and he was different. He stared straight ahead, wouldn't respond to me at all (he didn't respond like a typical 4 year old, but he did respond to me all the time), and was just off.

Many years before I met my husband I had worked in a day care pilot program designed by Easter Seals. We were an inclusive daycare with children that had medical needs, special needs, and those who had no extra needs at all. The concept was to allow these kids, from birth forward, to come together in a daycare setting so that by the time they reached school age, special needs children were nothing new and everyone would see each other as just buddies. You wouldn't see the kid in the wheelchair, you would see Joe, your friend since infancy. Also, since we were in the Easter Seals facility, the children with any type of special needs could receive their therapies on-site with minimal disruption to their day and parents didn't have to take off work to help get them to appointments.

All of that is to say, I had seen this before. I will never forget that small boy that first showed me the face I was seeing in my son right at that moment. I was seeing an absence seizure (Petit Mal). I was scared. He had never had this issue before. I made an immediate call to my husband and then his doctor. We took him in and he referred us back to his Neurologist who, in turn, called for an EEG.

Nothing.

We went back to school and, a few days later, there it was again after he was done with school. This time I wasn't the only one who saw it happen. We called his Neurologist who had us come see him immediately. He suggested that the stress from school was causing these. Take him back, let's do more testing, we will figure this out.

On the way home my brain couldn't stop thinking. Stress from school ... causing seizures ... take him back.

We got home, I put him down for a nap, put our younger son down for a nap, and asked my husband to sit with me on the sofa. I was terrified to say what I was about to say, but knew if I waited I wouldn't be brave enough to get it out. I hmm'd and haa'd for quite a while before I finally said, "I know the doctor said we needed to put him in PPCD. I know we wanted to homeschool him and were told we couldn't. But, how could we do any worse? And, what if we could do better for him?"

Well, that was all my husband needed to hear. He had been thinking the same thing but was afraid to put more stress on me with all I was dealing with helping him and with our younger son's issues. He said "pull him out". That's just what I did. I left him at home the next day, almost skipped into the office at the school and nearly sang the words "I am here to withdraw my son from PPCD". I had a few things to sign since it was not the typical withdraw. We did have an IEP and such. They sent someone to get his things from his classroom while I signed a few forms and that was it. They told me they would always be there if we needed anything, and I walked out the front door with more joy in my heart that I had in months.

I came home, took one look at my son, and thought "now what".

Join me for the last part of our story where we jump into the "now what" of our situation.

Autism Awareness Month - Day 11 Our Story Part 4

If you are just now joining me, check out the first 3 parts of our story before heading into today's post.

Part 1
Part 2
Part 3

We were left with one big question. What do we do now?

My first inclination was to make sure I was right. I knew I was right, but I am not a doctor and my thoughts hold no merit with insurance companies or the medical community. I found a Neurologist within about an hour drive of us who others recommended and made an appointment. My husband couldn't get the time off, so I went by myself.

I took my little boy by the hand, walked into that appointment, and laid out what I had been seeing. He listened and then started a battery of tests. I watched as he played these games with my son, knowing there was a reason behind each one. Finally he sat down, closed his box of fun things, handed my son his stethoscope to play with, opened his file (they still used paper and pen then), and looked me in the eye. He said, "your son has Autism". He then stopped and waited for me to digest his words. The thing is, I had digested them weeks earlier. I knew what my son had. So, without skipping a beat I said, "OK, so what do we do next".

It's like he couldn't comprehend that I wasn't a mess. But I had already found my resolve (for the most part) when I first read those words on the screen weeks earlier. I just needed to have a team to help me help my son. He said it again as if I didn't understand his words. I told him I understood and what did we do next.

He gave me a short list:

• Enroll him in public school PPCD program (preschool for children with special needs)
• Take him to a Developmental Pediatrician for the full Autism testing program
• Give him this medication for his ADHD tendencies

I walked out with that paper in my hand, the prescription, and my son's tiny hand in the other. As I left the building it hit me, this was my new normal. And I cried. I walked down the sidewalk crying. It wasn't the ugly tears I expected, more of a soft letting go of what I thought life would be like. By the time I got to my car it was over. I had found my spine and it was time to get into warrior mode. 

I started my car, pulled out of the parking lot, and called my husband with the news. We had a lot of decisions to make and not a lot of time to make them. 

Autism Awareness Month - Day 10 Our Story Part 3

If you are just joining me, please take a moment to check out Part 1 and Part 2 of our journey into Autism.

Photo Credit

When last we visited, I had made an appointment with our pediatrician to talk about what was happening to our son. I walked in with a very different child than he had seen the last time. This little boy didn't look at all like what he had declared "healthy, happy, on track developmentally, and advanced in his speech".

We spent a few minutes discussing our concerns. He did a check up (heart, eyes, ears, nose, etc). Then he turned to me and said, "you are pregnant. He's reacting to that. He's jealous of the new baby. It's very common."

I about hit the floor. It's like someone stopped the world and nothing was moving anymore. I couldn't believe what this man was telling me. This man was a Christian, a pediatrician, and someone I had come to trust. I finally started to breathe again and said, "but we haven't told him we are having a baby". I wasn't showing. We hadn't bought so much as a baby wipe for the new little one. The only people we told were called AFTER he went to bed because we wanted to make it a big deal once I was out of the woods, so to speak (this was after a loss of a baby very early). He told me, "he knows, it's jealousy, give him some time and extra attention".

Extra attention? I was a stay-at-home Mom with one single child. If I gave him any extra attention it would require me not sleeping. He was all I gave attention to most of the day. I left completely bewildered. I didn't understand what was happening.

I came home to an anxious husband. He asked what happened once he returned home from work. I told him what the doctor said. His words were, if I recall correctly, "well that's an idiotic thing to say". Sigh. I couldn't disagree with him there.

That's when research me was born. I had to figure out what was happening to our son and I had to figure it out fast. At this point we had put baby gates in all of the windows of our home because he hit them so hard when he ran we were afraid he would either break the glass or pop them out of the pane. My calm, cool, sleeps well, speaks well, knows all his letters and their sounds toddler was gone and I had to figure out why.

I researched any time I wasn't with him. If he napped, I researched. If he slept, I researched. If my husband took him to the park to play, I researched. One day as I was online I got so frustrated and just typed in every single issue he had. I just put it in the search box and hit enter.

That's when my world was rocked to it's core. What came up on the screen was article after article, study after study, and page after page with one common theme ... AUTISM.

The more I read the more I knew this was it. It made me sick. I felt like all the air was sucked out of the room. How could my sweet, smart, funny, lively, talkative little buddy have Autism when he wasn't like this three weeks earlier? It made no sense. But, I couldn't deny what I was reading. It was there in black and white.

I had to tell my husband. When he came home that day I sat him down and said, "(Charlie Brown) has Autism ... I think." He looked at me like I had three heads. He told me I was wrong. He couldn't have Autism because he was smart (oh, how little we knew). He said he wasn't sitting in the corner rocking (how VERY little we knew), and he had done some of these same things as a child (no he hadn't). He was in denial. I was in "let's rock this and fix this" and he was in "not my son". I didn't know what to do.

Finally I gave up trying to convince him and retreated into research Mommy. One day, while our little man was sleeping, I was reading about Autism and found a link that had the standard list of symptoms all in a nice format. I told my husband, "listen to this" but didn't tell him what I was reading. I just started to list off everything on the page. Once I was done he said, very loudly, "that's it!!! That's what (Charlie Brown) has! What is THAT?"

I didn't know what to do, so I turned to look him in the eye and said, "that's the list of symptoms for Autism".

It hit him like a ton of bricks. His mind was racing and I could see the panic in his face. I just kept quiet and waited for him to digest what I had said. Finally he spoke, very quietly, and asked me, "OK, what do we do now?"

What we did now will be my next installment. I hope you will join me.

Autism Awareness Month - Day 7 Our Story Part 2

I started our story a few days ago. If you haven't read the first part yet, check it out. Our Story Part 1

Photo Credit

Back to the email. I finished our email to family updating about how much he had grown, how he did with his shots, what the doctor said about his development, etc. After sitting down for a rest (I was very, very newly pregnant), it was time for our little man to wake up. I went to get him when I heard him cry, changed his diaper, and sat him down to play with some toys. It wasn't long before I started to notice he wasn't talking to me. He normally was quite chatty after a nap. I didn't worry, figured maybe he was tired after an eventful morning, and went about our day. As it got later he still wasn't talking ... at all. I tried to engage him, but no words.

My husband came home from work and I didn't say anything, I wanted to make sure I wasn't just off my rocker. He started to ask me if Charlie Brown was feeling OK because he wasn't talking. What we didn't know was that the words he spoke before I put him down for a nap would be his last words for a long, long time.

We all woke up the next day and that's when the craziness started. He started his morning with breakfast (a fitful breakfast) and then proceeded to bang his head into hard objects (the wall, the TV, whatever he could find). This freaked me out completely. By that afternoon the running had started. Hours and hours and hours of endless running. He would only stop if he ran into something like a piece of furniture, a wall, a door, a window, etc. Then he would only stop long enough to change directions. All day it was silence, head banging, and hours and running. This was our new norm. I didn't know how to get him to stop.

I finally decided we needed to speak to our pediatrician. I made an appointment and went in. That would be my first medical world shock, but not my last.

To be continued ...

Autism Awareness Month - Day 4 Our Story

Photo Credit

Our story is long, growing longer each passing day. It all starts with our oldest son. It took us a long time to get pregnant. When we finally saw those two pink lines we were over the moon excited. This child was very prayed for and very wanted.

When the big day came to have our little man, I was nervous but ready to meet him. He came into this world with not much of a bang, except in our own hearts. He cried just a tiny bit, settled nicely once he was swaddled, and let Mommy kiss him all over his face. (like he had a choice)

As they nurse took him to the nursery with my husband in tow, she said (out of earshot to me, not on purpose just where she noticed the issue) "I think we will stop by the NICU to just have a look at his breathing". He had meconium aspiration (very simply put, he pooped in the womb and then breathed it in) which lead to Transient Tachypnea of a Newborn (AKA breathing problems). This all lead to a 10 day NICU stay trying to get him to breathe properly, be able to suck, swallow, and breathe at the same time while feeding, and to keep his temperature where it needed to be. He also thought it would be fun to throw in a bit of jaundice just to keep us guessing. We finally got to take him home and it was like a dream.

He was the type of baby that made you want to have a dozen. He ate well, had a great temperament, smiled easily, engaged us well, and slept so well at night. We used to joke that he even cried politely. Oh, he let us know when he was hungry or wanted a diaper, but ... well ... you just had to hear him cry. He met his milestones, was advanced in his speech, could name all the letters of the alphabet at 21 months old (my aunt can share her favorite Charlie Brown story with you about this) and was just a fun kiddo to raise. Guess that's why we had another one. (ha ha)

At 2 years old we did something that was completely uneventful in our lives. We took him to his 2 year old well baby visit. We did them each time we were supposed to, so this didn't phase me at all. I actually loved getting the paper they gave you afterwards that said how big he was, how he was doing on his milestones, etc. I always emailed family once we got home. This day wasn't any different. We came home, had some lunch, I put him down for a nap, and off to email how our little buddy was doing. I had no clue my life was about to change in a massive way, a scary way.

(Part 2 Next Time)

Autism Awareness Month - Books

I wanted to do something different this year. Normally I share our story (and I will later), but today I am going to share some books on the subject. I have read each of these and have gleaned at least one thing that made them worthy of a recommendation. It doesn't mean I agree with everything the author said, but there were some points made that I feel can help parents and those living with people on the spectrum.

Dr. Sears is a good place to start. It's basic, but it doesn't pretend to be anything other than what it is, a starter book for those new to the spectrum. I disagree with some of his thoughts, but there is some solid information there for those new to the scene. 

I could go through half of this post about this author. Let's just say, if Dr. Temple Grandin has written a book on Autism, get, read it, understand it. She IS a person with Autism, so she has an insight that so few do. If you ever get a chance to hear her speak, take it. It's wonderful to see how an adult on the spectrum interacts and communicates. Her writing will shed a bit of light on that, as well. 

Not a Temple Grandin book, but good for kids and the author was aided by Dr. Grandin. It explains some of the unwritten rules about life to kids who so often don't grasp them. 

This book is quite different as it is the first in my collection of how to help those on the spectrum. It shares about a program called "Brain Balance" and there is a lot of merit to this program. I have watched children do exceedingly well and have incredible successes after using a quality brain balance program. 

These two books are, hands down, two of the most important you will have in your Autism library. Sensory issues so often plague our littles and these two explain the why and how to help of SPD. It gives in-depth things you can do, and a LOT of them to help with the sensory side of Autism. 

I had the opportunity to hear Dr. Bock speak 2 years ago. I should just say "get this book" after hearing him. But, with you not being there, it's not enough. This gets into the meat of WHY we are seeing a rise of the 4 A's (Autism, ADHD, Asthma, and Allergies) and how to help protect and heal your kiddos. 

This book has, single handedly, changed our younger son's life. The seriousness of what allergies can do to a child's body and mind is, well, mind blowing (no pun intended). I never, ever would have believed what food, chemical, and environmental allergies could do to the brain and body if I hadn't seen it myself. I will be sharing more on this book later, but for now, I highly, highly suggest you get it and it's sister book "Is This Your Child's World". Dr. Rapp is, as far as we are concerned, a genius. 

Autism Awareness Month - Day 1

Autism is not a one size fits all diagnosis. In fact, most medical issues are not a one size fits all diagnosis. If I tell you I have a broken bone, what does that tell you? It tells you some bone between my skull and my toes is broken but not which bone, or to what degree. It's a general term. Autism is the same way.

Kids with Autism can't speak.
Except many can.

Kids with Autism have low IQ.
Except many don't.

Kids with Autism rock back and forth in a room.
Except many don't stim that way.

Kids with Autism wear diapers their entire lives.
Except many potty train.

Kids with Autism have one great almost savant like gift.
Except so many don't.

This is why the quote from Dr. Shore is so vital. If you have met one person with Autism, you truly have only met one person with Autism. You need to get to know a person, any person, to find out who they are. The same thing goes with people on the spectrum. They are individuals who live out their Autism in their own unique way with their own unique manner of presenting with their symptoms.

Today is the first day of Autism Awareness month and I will be sharing a lot more about this unpredictable world of Autism our family deals with. We didn't ask for it, but here we are helping our son each and every day. He is a huge blessing to our family, Autism or not. He isn't his Autism. His Autism isn't him. He's our sweet little boy that we love beyond words. We all have struggles in life. This is his.

Know Before You Glow

Photo Credit

It's coming. April is Autism Awareness Month and the "Light It Up Blue" campaign is about to be in full force.

Having a son with Autism, you are probably thinking I am stoked for the awareness campaign that Autism Speaks puts out each year. I am not excited at all. In fact, I have asked all of my family and friends to NOT light it up blue in honor of my children, as I do every year at this time.

I will spend April spreading awareness. I will share our story, share advice and information, and really help spread the message. But my lights will remain white and I hope yours will, too.

Before you jump the gun, I am also not in the "accept us how we are and do nothing to fix our medical issues" camp either. My son has real medical issues tied to his Autism and I can't sit by and allow his body to be sick. I make sure he has the medical care he needs for each issue that arises.

Autism Speaks doesn't use the funds donated to their organization wisely, in my opinion. They have VERY high paid board members (ridiculous for an organization with it's purpose). They waste their money and this is completely inappropriate for an organization that is supposedly all about people with a specific medical issue. If I donate my time and finances, I want to know it's being used for the purposes stated or intended, not so that someone can drive a Lexus or Bentley.

Last report I read, only 4% of their budget went to help families. Of course 22% went to fundraising, so they are spending more money raising funds than they are helping families, much more.

They support pre-natal testing for Autism. Now, that might seem like a wonderful idea. The problem is, there is a pre-natal test for Down Syndrome which is very often wrong (false positives) and have lead to more abortions than I can count. I would support a test done the same day of birth or later on an infant. More knowledge would help the parents. But Autism is not a life ending disease that we must know about before a breath is taken by the baby in order to make sure we deliver in a hospital that can handle the medical needs. Pre-natal testing means really one thing ... abortions.

It might shock you to learn that not one single person on the Autism Speaks board actually HAS Autism. What a sad state of affairs that is. There are so many men and women well qualified to sit on the board that could give first hand, real world experiences with Autism to this organization. They have none. Oh, they had one. He quit. He said they were demeaning to Autism. That speaks volumes.

If you look at where the money goes they raise, you will see that it appears they are fundraising to line their own pockets, that the board members and such are the people in need and they toss out a few bucks to shut up the IRS on their status. They do very little research and most of that has nothing to do with true cures for the medical side of Autism, to help improve therapies and treatments for our kids, and to better their lives.

There are many organizations out there that do use your money wisely. There are even local organizations that are very small but are doing mighty things in the Autism world. You could even donate to a therapy center or a family living with Autism. But please, do not light it up blue, wear your blue shirts, or buy your blue ribbons and puzzle pieces. Give support to families that need it and donate to organizations that respect your finances.

My porch light will be white like it is every day of the year. Please know before you glow.

Who's Up for Round 2?

We tried gluten free and dairy free diet.

We didn't like it.

We stopped.

We were wrong.

Our new doctor is wonderful. However, he has one issue. He wants our older son on a gluten free/casein free diet. OK, it's not his issue. It's our issue. It's needed. He's not wrong. UGH! I just don't want to deal with it as a Mom. (being totally mom-honest here).

Today I pulled out my cookbooks to start making a shopping list for our favorites (we do have some, if we have to be GF/CF, that would be considered favorite) and took the time to print a few new recipes to try.

Tomorrow I shop.

If you are in your local store and see a woman sitting on the floor, knees to her forehead in defeat, crying "why me", just pat me on the head and know I will move past it soon

Stimming

Self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders. - Wikipedia

Stimming! It's one of my least favorite aspects of Autism. It can show up in various forms depending on the child, and there are as many ways to stim as there are kids on the spectrum. It's painful to watch a child HAVE to do something with his body, a toy, a random object, etc.

Our son used to have far more stims than he does now. But, he still has very obvious and prevalent stims, even in public. He swishes his hands back and forth through his hair, runs a lot (not away or to places, just like pacing on fast forward), and makes some barely discernible noises while he runs. We have yet to stop this activity or turn it into a more subtle form so he can do it privately when in public to help him focus and feel comfortable but not need to be up and moving so much.

He says he's happy when he's doing it. He tells me he's thinking about things he wants to create or things that he's happy about. So, in that regard I never want him to stop stimming. But, I also know that, as an adult, he's not going to be able to hold down a job if he has to do these things as much as he does now, so we have to help him move from that need in a way that doesn't hurt his creativity and flow but also helps him be able to function in the real world. It's a very fine line you have to walk as a parent of a child with Autism.

So, a post that all rounds up with "I have no idea what the answer is". I love those. I want him to be himself. But I also want him to be the self that can accomplish anything he wants to accomplish in life. I want him to be comfortable in his own skin and also know that if he wants a job, situation in life, or goal something like a behavior won't stop him or slow him down. It's one thing to stim if you want (and we let him have total control of that as long as it's not dangerous for him to do the behavior - i.e. running stim while in a store or parking lot is not safe), it's another to HAVE to do it. That second part s what we are trying to help him with in his daily life. The quest is an honorable one, but one that is very hard to win.

 

Talking it Out

We talk in our family a lot. We discuss everything. It's not uncommon to hear "hey, can I talk with you a minute", "kiddos, come here, Mom and Dad want to chat with you", "can we go in your room for a private discussion", etc from us or the kids. We believe communication is a big thing in families and also something that is a lost art.

This doesn't just apply to when the kids are in trouble or when one sibling is picking on another. We talk about life changes, goals, ideas, thoughts, feelings, medical things, and more. We want the kids to know they are important in our day and for us to be the natural source of support for them. Our kids know it all when it comes to the big things in life, and the small things (of course, not the private things my husband and I discuss as a married couple).

Having said that, sometimes we, as parents, choose to keep things that will directly affect our children private. Some things, even if they aren't huge, will have an affect on our kids (emotionally) that we want to prevent.

For instance, our older son HATES change. He doesn't care if that change is going to be the best thing in the world and a blast to do. Change is bad in his mind. He loves where we live, doesn't ever want to move, hates the city, and yet still longs for his old house that was smaller, older, with a small yard, average neighbors, no real friends, and on a busy, busy street simply because it's what we had when he was born and anything else is change. Change is hard for him. He's just now, over 5 years later, starting to talk about how we should live in this house forever and not buy a new one. So, this is just now beginning to be his norm. 5 years people.

Now, this isn't such an off-the-wall thing seeing as he has Autism. In fact, it's extremely common for many kids on the Autism spectrum. Just ask the OT who has had to half drag a child out of a room because moving from blocks to home or from a chair to a swing is a horrible thing because it's change. Ask the Mom who dared put pepper on a food instead of salt and "what are those black things, I am not eating that" happens at the dinner table. Ask the Dad who went down 1st street instead of how Mom always goes down Main St. and you will know all about change in the ASD world.

You can see why we are very, very selective with how we communicate change or new things to him. More specific and recent case in point, his diet. He has a very lax diet because he was so self-limiting due to his medical issues. The diet his doctors wanted him on made his issues worse so we put it off until we could build up his food options for oral intake to the point we felt safe to make the big dietary changes. We wanted him beefed up physically and with what he would take by mouth. We have reached that point. It's time to make his diet changes. His doctors agree.

We aren't telling him.

We tried to tell him about diet changes in the past and he got so anxious over changes that it was worse for him than the actual new food and eating method. We are just going to work on the wean and new foods and see what happens. We hope, by the time he figures out there have been ongoing changes, that he will be past the initial hump and will be living with them so we can say, "but you have been doing it for 3 weeks, so it's not new and you see you can do this". My husband and I talked about this and feel it's best considering his issues. His doctors feel it's the best as well.

So, communication ... it's hard. We are talkers in this family. We don't like to spring things on our kids. We like them to feel included and like a vital part of family decisions. But, as parents, sometimes you have to realize you know your child best, you know how different topics will make them react, and you have to withold information, at least for a while, to help them transition.

Took a Chance

Our younger son decided that he wanted to learn to play the piano. (or pinano as he calls it) I called around, found 3 teachers to talk to, chatted with them, and found one we felt would be the best fit. I signed him up and yesterday was his very first lesson.

I will start with the fact that he loves it. Yes, it's day one, but I think he will continue to love it because he's very musically inclined. He is always singing (has since he was old enough to make noise on purpose), loves to listen to any kind of music, has quite a nice collection of music from various genres, and is very interested in musical instruments/making his own music.

But, what is this chance we took? For the first time ever, when putting our kids into something like this, I didn't inform the teacher he had any special needs. I simply signed him up and figured if it came up and the teacher needed to know, we would cross that bridge at that time.

We will see how it goes. I just don't want our sons to be their labels to everyone. I want them to stand on their own merits, let people get to know them and not those letters after their name, and we will deal with what comes. There might come a time when we need to inform people, but most don't need that information. And, on top of that, our children deserve their medical privacy.

I will let you know how it turns out for us.

Getting Real

When we read people's stories online, they are heavily edited, carefully chosen pictures that they want to share. We rarely see the day they eat cookie dough on the sofa while not getting out of their pajamas. We see adorable little children lined up in a row, doing their school work with no whining, while their tousled hair (that took 30 minutes to get that bed head thrown up in a quick bun look) looks adorable as they mix up homemade cookies.

Yeah, so not me! Let me describe my day.

I wake up at 3:00am to kind of nudge my husband to make sure he's awake to get ready for work. I wake up at 3:09am and repeat. I wake up at 3:15am and repeat. I am often then awake while he's still groggy in bed thinking about getting up. It's a good thing he's so cute and I love him so much.

• I get up after laying there staring at the ceiling and traipse into the living room. I grab my pillow as I leave my bedroom and lay on the sofa. I put a DVD in that I don't care if the kids see in case I fall asleep and they walk in on the end of it. This means something like Leave it to Beaver or The Andy Griffith Show or the like. 

• I watch it a while and go back to sleep on the sofa after convincing our cat that he doesn't want to play with me. 

• 5am or so comes and I am awake for good. No, I am not just an awesome, well scheduled, and put-together Mom. Nope, for some ridiculous reason I am a morning person. No matter what I am up early. I don't want to be. I am not singing with the morning birds happy. I am simply awake. 
• 7am or so and my youngest is up. He comes into the living room, sits next to me, leans on me, sighs, and then says, "canIwatchamovieIamhungrycanyoufeedme". It happens every morning without fail. 
• I slowly get up, grab him some cereal or toast with "chocolate milk" (formula mixed with almond milk because he doesn't eat well) and sit back down with him letting him eat on our card table or desk which is in the living room while he watches his kids DVD. I give him his morning supplements his doctor wants him to have, and hand him pear juice to drink with it.
• I hang out and wait for our older son to wake up. Since he was up until midnight due to his sleep issues tied to his Autism, he won't get up until about 9 - 9:30am.
• He wakes up, I kiss his sweet sleepy head (because he has the biggest bed head I have ever seen with hair going everywhere and a sleepy smile every single morning), and snuggle with him a bit. 
• He doesn't ask to eat. He never asks to eat. If I didn't make him eat I think he wouldn't eat all day. So, I tell him it's time to eat and give him his breakfast choices. He likes cereal, toast, or eggs most mornings. 
• I let him sit at the card table as well because brother did and, well, you know how that is. 
• We finally finish with his breakfast between 9:30 - 10am.
• I mix his supplements (those that can be mixed) and get them in syringes. I put them into his g port of his GJ tube and change his tubie pad. 
• In this time I have grabbed something with caffeine and added in my Before the Flow or After the Flow (depending on the time of month), my zinc, and take my allergy pill after forcing myself to eat a little something. I am not a breakfast person and could skip it everyday. But, since it's important, I take my allergy meds in the morning knowing it will force me to eat or else I will be nauseated. 
• I get dressed, the boys get dressed if we get dressed that day. I almost always do. I feel more productive with clothes on vs. pajamas, don't know why. We then do our typical personal care such as brushing our teeth and hair. I don't put on make up. True confession, I very, very rarely wear make up. I don't like the feeling of it and yes, I have tried it all. It's a sensory thing and my husband loves me bare faced, so it's a win-win. I also rarely do much with my hair. I brush it, put it in a pony tail about 40% of the time, and that's it. I am a very low maintenance person. 
• The boys play, run around, and have fun in between all of these activities.
• Yeah, well, it's now 11:00am and it's time to contemplate lunch. 
• I normally make a quick lunch. It might be left overs from supper the night before, a sandwich, hot dog, pasta, etc. 
• I make their lunch supplements and hand my younger son his (he swallows his) and mix them up for my older son to put in his g-tube.
• Depending on how well our older son has eaten for the day, I start his continuous feed now and it will last him the rest of the day and into the night. If he's done awesome (which is rare) I wait until supper to start it.
• The boys clean up their places and it's time for quiet time. 
• I tell the boys this is a good thing for their bodies to rest for an hour. They don't have to sleep, just participate in a quiet activity. Mommy really just wants to have a bit of down time. 
• After quiet time we have a snack and start school. I used to do school in the morning but the kids have told me they hate doing it that early and prefer the afternoon. I am fine with that since I do better in the afternoon, too. I have noticed a big difference in their attitudes towards school work and their attention when we work in the afternoon. 
• School ends and we do some chores. The kids pick up anything in the livingroom that is theirs, clean up their rooms (if I remember to ask them - just keeping it real), feed their pets, and then do other chores depending on what needs to be done. 
• It's soon time to think about supper. I make supper, we eat without my husband 4 out of the 7 nights in a week due to his work schedule. I, again, hand supplements to our younger son and mix them for our older son to go in his g-tube. 
• If our son did great earlier with his oral intake, I start his continuous feed now. 
• Both kids run off to play for a while. 
• Every other night the boys get showers/baths (depending on which one they want). 
• We have prayer time, often talk about the day, and sometimes read a book or just snuggle for a while. 
• I kiss the boys, give them big hugs, tell them how much they are loved, and send them to bed. 
• 10 minutes later one of them is out wanting something (water, another hug, to tell me a life altering issue that just came to them once the lights went out, etc). I listen/hug/get them water and send them back to bed. 
• Younger son stays in his bed until he's asleep. He often reads a book until he goes to sleep. 
• Older son stims. He stims for the next 3 - 4 hours until he falls asleep around midnight. 
• I sit on the sofa, chat with hubby, maybe pop in a DVD, go over what needs to be done the next day, and settle in for a long night as I can't go to bed until our older son is asleep because he roams. He never leaves the home, he just roams in our home. I need to be up to help him with whatever he needs. There is always a need in his mind. It's never aimless. 
• I head to bed once the quiet happens in his room. 

Days are busy. I am OK with that. Sure, I would love quiet days where we did nothing but read books, take long walks in the woods, and play board games. It just really doesn't happen. It's our normal. 

No, I am not a saint. There are days that I stand at the counter in the kitchen wondering if it would be horrible if I just skipped one day's worth of supplements for them so I didn't have to bother with it. I don't, but it is tiring. There are days I dream of hubby bringing home a large pizza with extra pepperoni and double cheese. I make a gluten free spaghetti instead, but I dream. There are days I pretend I am sleeping when hubby is home hoping the boys will go to his side of the bed. They don't, but I try. There are days when it is lunch time and it hits me that I am still in my jammies. I change clothes, but it sure did feel good. We all have weaknesses. I don't do these things with some halo on. I don't want to wash dishes most days (and some days I don't). I don't want to do laundry, or make another pitcher of formula, or anything else medical. 

This is not who I ever planned to be. I am a techie. Computers and technology have known issues with known causes and you fix them in known or not so known ways. You have a beginning and an end to an issue with any system. You can walk away from the office at the end of the day and know you did a good job and it won't be there tomorrow. I was a manager and loved working with people helping them succeed at their jobs. I was well liked by my employees and my CFO and COO gave me lots of praise and kudos. I got raises and more responsibilities, even responsibilities far above my pay grade. 

But you know, the perks of this job are so much better. When my younger son smiles and tells me we have the best talks, I don't miss that job. When my older son smiles at me at all, I don't miss those raises. When my sons tell me I am the best teacher in the world, those responsibilities I held so dear mean nothing. It's hard. It's tiring. It's mentally exhausting. But it's the best job I have ever had. And THAT is getting real. 

When Life Gets Hard

"I feel like I am hitting my head against a brick wall". I have heard it many times. I have said it many times. In the Autism journey you can feel like you have not only hit your head into that proverbial wall, but like you have been knocked out more than once.

My advice to you is stop. Stop banging your head for just one minute.

Pull your head away from the wall.

Open your eyes.

Look to your left. Look to your right.

Every wall has a door. Find that door and open it. There's no reason to continue hitting your head when you can turn a door knob and leave that entire room.

We have done this many times. It wasn't until I stopped banging that I found the door to open. It wasn't until I stopped the senseless acts that were causing me so much frustration that I could find the door. It wasn't until I gave it to God through prayer that He gave me enough to strength to stand up and find an exit.

I spoke to my husband who knew someone who was just banging away and banging hard. I told him to tell them this advice. Just stop the ramming and start looking for that door. It's there, find it and see what's on the other side.

Sleep - It's a Good Thing

From here

Sleep, it's a huge issue in our home. Kids don't get it so neither do the parents. I remember hearing parents gripe about a kid not sleeping well. You hear stories of "one more glass of water", "a few more pages, Daddy" and the like and you smile. You laugh inside knowing it's a part of growing up.

Yeah, that's not what I mean at all.

Picture a child so anxious about night time that he will beg, plead, and beg more to not sleep alone. Imagine a child so revved up that he runs for hours in his room until he finally slows down at 1am, napping for an hour or two (and I do mean light sleep), waking up, stimming some more, going back to sleep lightly for two hours, and continuing like this until one time he wakes up, sees sunlight outside, and is out of his room at 6am.

I mean sleep issues!

There are ways to help these issues. The problem is, many people want a one size fits all approach. I honestly have people ask me all the time, "what are you using for him and tell me the exact dose".

Here's the issue with that. 1) How big is your child compared to mine? If mine is 65lbs and your child is 32, that's a huge difference in weight and what my child can take might harm your child. 2) What are your child's reasons for not sleeping? What is causing my child to stay awake might not be what causes your child not to sleep. Did you know the reason my older son doesn't sleep is very different than why our younger son doesn't sleep? Same result, different mechanisms in the body.

Instead, I tell the person to call our doctor, or give them the names of other similar doctors who can help them figure out what's going on in their little one's body.

Having said that, this post is to also share our newest possible success in the sleep realm. Our younger son has a lot of anxiety tied to bedtime. Who am I kidding? He has a lot of anxiety tied to life in general. Our doctor has figured out a lot of the reasons why and we are starting new protocols slowly. We have only started two items and one is something we have used before but his body is deficient so he's on it again. When we start supplements, I always start one at a time. This let's me know what's working, what he might react to, and what he might be having an odd side effect with so I can tell the doctor.

Here's what we have so far:

• Massage - At least once a day, moving up to twice a day, I massage our son's back, calves, and feet. I use Ava Anderson's Dream Cream with two drops of Lavender essential oil mixed in. He loves it. He has always loved massages. If I only do it once during the day, I make sure that one time is after supper. If I do it twice (which we are moving to) then I do it in the morning after breakfast but before school and then before bedtime. I take my time and allow his muscles the time they need to really relax. I start on the shoulder area of the back so he will start to breath in the oils and that will help relax. 
• L-Glutamine - Our doctor has us giving him 2,500 mg of L-Glutamine from Klaire Labs even evening before bed. I give it to him after his massage and just before he brushes his teeth. We use the powered form and put it in some pear juice (just enough for the powder to fully dissolve as there is no taste to the supplement). 

We have other items we will be adding, but this is where we are since meeting with our doctor. Here is what we have seen so far:

• A child who is calmer and more able to move through stressful situations. 
• Monday - it took our son 2 1/2 hours to fall asleep with quite a bit of anxiety and being in his room. 
• Tuesday - it took our son 1 hour 16 minutes to fall asleep in his room with my aid and medium levels of anxiety (reading stories, singing a lot of gospel songs, praying with him, etc).
• Wednesday - it took him 40 minutes to fall asleep in our room with no anxiety. 
• Thursday - he woke up and came to me asking if tonight he could sleep in his own room with me helping him a bit with a story and song. He said he thinks he's ready to move in there now. 

Why this is big: He has always had so much anxiety with sleep that even suggesting he sleep in his room would throw him into a massive panic that was honestly fear based. For him to come to us and ask to sleep in his own room is a huge, huge step. He also takes a very long time to fall asleep, even if we lay down with him. The fastest way to get him to sleep is for us to be in there, but even that is a long journey. For him to fall asleep in 40 minutes, that's a big deal. 

Our son, who has had sleep issues since he was a week old, is starting to sleep. I pray this is his answer. God lead us to an awesome doctor who is, what I would classify as brilliant. He saw our two kids issues and knew how to help. He said what we were doing for our younger son would happen quickly and I was afraid to have hope. I am starting to let go of that fear and see the hope that is out there. 

If you are a parent and feel like giving up, or have given up, don't. There is hope. It might not happen overnight. We have been trying for sleep for 7 1/2 years. But it can happen. Pray hard, seek His face, and look for doctors who will listen and know what to do once they understand your child's issues. 

If you need a place to start in finding doctors, let me suggest the two websites below. You can find one closer to you. You might have to drive a bit, but ask about phone and Skype appointments. Many will do that for those who aren't local.

Defeat Autism Now - don't let the name fool you. They are biomed doctors and can help much, much more than Autism. 

MAPS - the newer and very up-to-date people out there. 

Stand strong, parents. You can win this war. 

*Most of the links in this post are not affiliate links. The only one that I am affiliated with is the link to Ava Anderson. I receive nothing if you click the link, only if you make a purchase. You will not pay more for the item, but I do receive commission on anything purchased. 

Catching Up

Sorry I was gone a few days. Being Thanksgiving week, having a nasty storm, and crazy doctor appointments, and it made for me missing being here.

We traveled to my Mom's for the holidays and came home the Friday after Turkey Day in order to have a day of rest before going to my in-laws on Sunday to celebrate with them. We got a call Saturday morning that, due to the rain, the road to my sister-in-law's was flooded and there was no way we could get in and the day was canceled. Sigh.

Sunday evening we packed up and went to my Mom's again because she's very close to our sons biomedical doctor. It takes us 2 hours to get to her home and, since our appointment was at 9:30am the next day, we didn't want to get up before sunrise, drive to her home, drop off the kids, and then head to the doctor's office in time to make the appointment.

From here

The day of our appointment came and I was excited. I love our doctor. He's so kind, warm, and smart, smart, smart. I mean, he makes smart people look mildly intelligent. I went in with my notebook of test results (I always take them with me so I can refer to them as he speaks and make notes on them), a spiral, and a few pens (you never know if one might die and I take a lot of notes when he's chatting). We sat down for what would be a 2 1/2 hour long chat. I didn't realize he had blocked off so much time for us.

The Good:

• We have a whole new protocol.
• He saw our sons issues very clearly.
• He knew what to do about them. 
• He thinks he knows why our younger son won't sleep alone at night due to night time anxiety.
• He thinks he has identified our younger son's eating issue.
• He saw where our other doctor lacked in testing in order to get a full picture on our older son. 
• He saw where other doctors had made mistakes in what they thought the issues were in a few areas and got us on the right path. 

The Bad:

• Melatonin is now in the trash. A major sleep issue we were having was being caused by a side effect of Melatonin. We caused what we were fighting. I mean, we didn't know, we were told to use it, but it was not a good thing for our younger son. 
• The frustration level we had at being misdirected for so long by other doctors was high. But we let that go because it does no good to anyone. 
• We have a blood test that needs to happen for our younger son. Oh, gee, how I look forward to that... (read sarcasm)
• I have stool sample to collect from our older son, the kid who never poops. Still waiting. 
• SLEEP! We have none. Since pulling the Melatonin the kids aren't sleeping. We have something new on board, but it will take up to two weeks to see results. So I am working each night to get our younger son to sleep and just waiting out our older son. This means I am up very late (1am or so) and then getting up early because my younger son gets up early. Come on 14 days!!!

And now I am back. I am not sure how much mental clarity I have, so if my posts make no sense, just keep reading, shake your head in pity for me, and know in 14 days it will hopefully go back to normal. 

Talk soon