Tuesday, April 18, 2017

Friday, April 14, 2017

Autism Awareness Month - Day 14 Our Story - Final Installment

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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. 

Thursday, April 13, 2017

Autism Awareness Month - Day 13 Our Story Part 5

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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.

Tuesday, April 11, 2017

Autism Awareness Month - Day 11 Our Story Part 4

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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. 

Monday, April 10, 2017

Autism Awareness Month - Day 10 Our Story Part 3

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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.

Friday, April 7, 2017

Autism Awareness Month - Day 7 Our Story Part 2

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

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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 ...

Tuesday, April 4, 2017

Autism Awareness Month - Day 4 Our Story

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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)


 

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