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

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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.

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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

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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 ...

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)

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.