Before I had my son I thought that parenthood was rainbows and butterflies and not really all that "hard." I had babysat many times growing up and that wasn't hard, so I had this Parenting thing in the bag. Or so I thought. 😉
Most of my pregnancy was easy, until the end. I was a week and a half late. My blood pressure was high and the doctors told me I was measuring "a little big." I wasn't dilating at all. We decided to do a scheduled C-section for a couple reasons. The main reason being they thought my son might be on the bigger side and they didn't want to risk breaking his clavicle when he came out, if by some chance I could even pass his shoulders. I was ready to do this. We got to the hospital at midnight the night before my C-section. My husband likes to describe it like this, "It was like checking into a hotel! We had this nice big room and we got to watch TV and relax." He later fell sound asleep and slept the entire night through. 😂
I, on the other hand, laid in bed, terrified and excited about what lay ahead of me the next morning. My biggest fear was the needle going into my spine. I didn't even care that I was going to be having major surgery, just get the needle in and get it out as soon as possible.
The next morning came and we were "ready." They took me into the OR first. I was huge and when the nurse told me to curl up in a ball, I immediately blurted out, "I AM A BALL." He thought I was hilarious but I did not see his humor. Fear was taking over and the needle was being prepped. They decided that I was going to be getting a spinal tap. They explained that if I could feel it on either side of my body that it wasn't right and I needed to let them know. Okay? They put the needle in and I immediately felt the whole right side of my body tighten up. "I feel that." They took it out and tried again. "It's on my left side now." We tried that position about 5 more times before they told me to lay on my side. They tried 2 more times with no luck. "Honey, we are going to get another anesthesiologist in here to do your spinal tap, we just aren't having any luck." Great. This was my biggest fear coming to life. Then the new anesthesiologist came in. This dude was like Superman. He waltzed into the room, grabbed the needle, poked me in the back and I was done for. They told me roll over. "Nope, I can't"
I don't remember much from the operation. I remember the doctor saying "wow, that's a lot of hair!" and "Cara, we made a great call having a C-section. He's a big boy!" I remember panicking because he wasn't crying and I remember melting as soon as I heard that first scream. I had completed my task. My beautiful boy, Xander, was now in this world. I remember staying awake long enough to hear the nurses cheering because my son was 10lbs 14oz! Then I remember asking if it was okay to take a nap. I was exhausted.
I remember driving home in the car with my son. Sitting beside him in the backseat yelling at my husband to "slow the hell down" because his tiny little head kept bouncing all over the place. I also, very clearly remember being absolutely terrified. How could anyone think I was responsible enough and knew enough to keep this little person alive? I was certain I was going to fail.
The first couple weeks went fine. Not much sleep, he ate and pooped A LOT. Nothing out of the ordinary. Then, one day, everything changed.
I swear, my son went to bed a happy baby one night and woke up the next day a completely different baby. He cried and cried and cried. Just when you thought there was no possible way he had any tears left in his little body, he cried some more. He only wanted me, 100% of the time. He didn't like strangers at all and hated being laid on his stomach. Oh, and did I mention that he cried? Like a lot. I can't even put into words the amount of crying that kid did. So I took him to the pediatrician. This can't be normal. So we tried different formulas. 4 to be exact, each one making him worse. Until we finally found the one that worked.
That didn't stop the crying though. So we went back to the pediatrician. That's when we heard the one word I'd been dreading to hear.
COLIC. No, No, NO. You can't do anything for colic and I wasn't just going to idly stand by while my child cried like he was. No. It's not colic. I can't fix colic. I can't change colic. It's NOT colic.
But dammit, it was colic.
If you've never experienced colic first hand then nothing I say can truly describe it. It's pure torture. How our marriage survived colic is beyond me. I could write a novel about colic and how horrendous it is but that would take too long.
We finally got into a routine. We figured out what sort of worked and what definitely didn't work. We survived. Xander got old enough that we started noticing that he didn't laugh. You could tell he was happy but no sound came out. I tried and tried but would only get one chuckle out of him. Once his colic subsided some we started going out more and seeing our other friends who had kids and noticed that if Xander wasn't crying, he was a very quiet baby. It seemed a little odd but after all the crying we endured the quiet was appreciated.
We made all of our well visit appointments and the doctors said he was a big healthy boy! When he got old enough that he was supposed to start talking the normal questions came at us. How many words does he say? None? Really?
When he turned one and he still wasn't saying Mom or Dad they told us we should seek out early intervention help for him. I immediately went home and scheduled his evaluation. I received speech therapy services as a kid and my husband didn't talk until he was three, so this didn't suprise me much.
As expected, when he was evaluated, he qualified for services. So we started receiving speech therapy services in home for 1 hour per week. We went through roughly 6 months of speech sessions with no major breakthroughs. Our speech therapist at that time brought up Childhood Apraxia of Speech (CAS) but said she wasn't really sure what the process was to get him tested for it. She said she would speak with her manager to figure out the process. In the meantime, I started researching it myself.
These are some signs of suspected Childhood Apraxia of Speech:
Your child is younger than 3 years old:
Most of my pregnancy was easy, until the end. I was a week and a half late. My blood pressure was high and the doctors told me I was measuring "a little big." I wasn't dilating at all. We decided to do a scheduled C-section for a couple reasons. The main reason being they thought my son might be on the bigger side and they didn't want to risk breaking his clavicle when he came out, if by some chance I could even pass his shoulders. I was ready to do this. We got to the hospital at midnight the night before my C-section. My husband likes to describe it like this, "It was like checking into a hotel! We had this nice big room and we got to watch TV and relax." He later fell sound asleep and slept the entire night through. 😂
I, on the other hand, laid in bed, terrified and excited about what lay ahead of me the next morning. My biggest fear was the needle going into my spine. I didn't even care that I was going to be having major surgery, just get the needle in and get it out as soon as possible.
The next morning came and we were "ready." They took me into the OR first. I was huge and when the nurse told me to curl up in a ball, I immediately blurted out, "I AM A BALL." He thought I was hilarious but I did not see his humor. Fear was taking over and the needle was being prepped. They decided that I was going to be getting a spinal tap. They explained that if I could feel it on either side of my body that it wasn't right and I needed to let them know. Okay? They put the needle in and I immediately felt the whole right side of my body tighten up. "I feel that." They took it out and tried again. "It's on my left side now." We tried that position about 5 more times before they told me to lay on my side. They tried 2 more times with no luck. "Honey, we are going to get another anesthesiologist in here to do your spinal tap, we just aren't having any luck." Great. This was my biggest fear coming to life. Then the new anesthesiologist came in. This dude was like Superman. He waltzed into the room, grabbed the needle, poked me in the back and I was done for. They told me roll over. "Nope, I can't"
I don't remember much from the operation. I remember the doctor saying "wow, that's a lot of hair!" and "Cara, we made a great call having a C-section. He's a big boy!" I remember panicking because he wasn't crying and I remember melting as soon as I heard that first scream. I had completed my task. My beautiful boy, Xander, was now in this world. I remember staying awake long enough to hear the nurses cheering because my son was 10lbs 14oz! Then I remember asking if it was okay to take a nap. I was exhausted.
I remember driving home in the car with my son. Sitting beside him in the backseat yelling at my husband to "slow the hell down" because his tiny little head kept bouncing all over the place. I also, very clearly remember being absolutely terrified. How could anyone think I was responsible enough and knew enough to keep this little person alive? I was certain I was going to fail.
The first couple weeks went fine. Not much sleep, he ate and pooped A LOT. Nothing out of the ordinary. Then, one day, everything changed.
I swear, my son went to bed a happy baby one night and woke up the next day a completely different baby. He cried and cried and cried. Just when you thought there was no possible way he had any tears left in his little body, he cried some more. He only wanted me, 100% of the time. He didn't like strangers at all and hated being laid on his stomach. Oh, and did I mention that he cried? Like a lot. I can't even put into words the amount of crying that kid did. So I took him to the pediatrician. This can't be normal. So we tried different formulas. 4 to be exact, each one making him worse. Until we finally found the one that worked.
That didn't stop the crying though. So we went back to the pediatrician. That's when we heard the one word I'd been dreading to hear.
COLIC. No, No, NO. You can't do anything for colic and I wasn't just going to idly stand by while my child cried like he was. No. It's not colic. I can't fix colic. I can't change colic. It's NOT colic.
But dammit, it was colic.
If you've never experienced colic first hand then nothing I say can truly describe it. It's pure torture. How our marriage survived colic is beyond me. I could write a novel about colic and how horrendous it is but that would take too long.
We finally got into a routine. We figured out what sort of worked and what definitely didn't work. We survived. Xander got old enough that we started noticing that he didn't laugh. You could tell he was happy but no sound came out. I tried and tried but would only get one chuckle out of him. Once his colic subsided some we started going out more and seeing our other friends who had kids and noticed that if Xander wasn't crying, he was a very quiet baby. It seemed a little odd but after all the crying we endured the quiet was appreciated.
We made all of our well visit appointments and the doctors said he was a big healthy boy! When he got old enough that he was supposed to start talking the normal questions came at us. How many words does he say? None? Really?
When he turned one and he still wasn't saying Mom or Dad they told us we should seek out early intervention help for him. I immediately went home and scheduled his evaluation. I received speech therapy services as a kid and my husband didn't talk until he was three, so this didn't suprise me much.
As expected, when he was evaluated, he qualified for services. So we started receiving speech therapy services in home for 1 hour per week. We went through roughly 6 months of speech sessions with no major breakthroughs. Our speech therapist at that time brought up Childhood Apraxia of Speech (CAS) but said she wasn't really sure what the process was to get him tested for it. She said she would speak with her manager to figure out the process. In the meantime, I started researching it myself.
These are some signs of suspected Childhood Apraxia of Speech:
Your child is younger than 3 years old:
- Does not coo or babble
- Says her first word later than you think she should
- Says only a few different sounds
- Has problems putting sounds together
- Puts long pauses between sounds she says.
- Does not always say a word the same way.
- Has some problems eating.
- Excessive Drooling.
Most, if not all of those, fit Xander completely. I wasn't sure that Xander had Childhoold Apraxia of Speech (CAS) at the time but I knew he needed tested. Due to other circumstances, we ended up switching speech therapists.
Our new speech therapist was well versed in Childhood Apraxia of Speech (CAS) and all that comes along with it. Her first visit she came in and watched Xander and how he worked so hard to get very little sound to come out of his mouth. She immediately suggested we take him to get tested for CAS as soon as possible.
I scheduled the appointment and waited for the day to come. While CAS isn't "life threatening" it sure is "life altering." I was terrified and excited for the appointment. Terrified to get the diagnosis but excited to get the right therapy for him.
We went into the appointment and as suspected he was diagnosed with CAS. I remember thinking that although I was fairly sure he had CAS, finally seeing it written on paper alongside my son's name was one of the saddest things I had ever seen. You have this vision of this perfect, beautiful life for your kids. You imagine you will always be able to protect and help them. In my son's short life, about 18 months at this point, I had come up against 2 factors that I couldn't help or protect him against (colic & CAS).
This was just the beginning of our journey. We are still writing our story and may be for years to come. My purpose in sharing this with you is to hopefully help another family. Another mom who feels like she's alone. Another Dad who just doesn't get it. Another Grandma who refuses to believe it. I want to spread the word about CAS so that the next time a Mom says, "My son can't talk. He has Apraxia of Speech" people can look at her and inquire about it with an open mind because they've actually heard of it. I've had people say to me that I "made up" Apraxia of speech. Trust me when I tell you that it's real, it's hard, and it's beautiful. This is our story. This is our fight. This is our life.
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