Throughout this entire journey, I have been telling myself that God put me on this earth to be your mother. I will be the best damn mother I can be for you.
I haven't always been. There are things I have said in the middle of your screaming jags that I wish I could take back and thankful you are too little to remember. I have had to breathe through more than one of your temper tantrums, just to keep my cool. I have to remember that you are a little girl, literally crying out for someone to listen to you.
We figured out the banana and milk allergy, which I am excited about. However, we still have chronically runny noses. We still give you allergy medicine every day, and we haven't had an ear infection since we took milk out of your diet, but in the back of my mind, a little voice has been telling me that this is just the tip of the iceberg.
The rest of it is yet to be discovered, and I decided after some research this weekend that I will, once again, be engaging in a fight to give you a voice.
I'll start back at Friday, when we had our speech evaluation by Childserve. Now, mind you, we have already had a speech evaluation by the Area Education Agency, and you are qualified and receiving services through the birth-3 year Early Childhood program. But I wanted to get a second opinion. I like our SP, Heather, through the AEA, but she hasn't ever worked directly with you. She has observed you once, and from there, she gets together with me, answers my questions, and gives me ideas on how to work with you at home. That's fine, but not really what I was envisioning in regard to therapy for you. Heather is about to get an earful when we meet on Tuesday, but that will come later in this post.
So I sought out the second opinion of a speech evaluation through Childserve. No surprise, you qualify. The speech pathologist we met with was YOUNG, and although she did a fairly good job, she didn't seem to engage you in a way that lead to really any productive outcome. Not that I'm qualified, or really do I know what kind of speech therapy you truly need, but while she was trying to engage you with pictures, I was hesitant. Pictures are not what you need, or really what you want. But I watched, and in fact, even judged, and left pretty disheartened. The only straight answer I got from the speech pathologist was that your receptive language is that of a 15-16 month old (I would put you personally had a much higher age, but again, I didn't think she saw what we saw every day), and your expressive language is that of a 6 month old.
That last part is what had me crying in the parking lot.
But now that I have had my pity-party, it's true. Your speech is much like Drew's. You moan a lot, make grunting noises, say "Ma" for mom and "Da" for dad, and make a weird "ck" sound in the back of your throat for any animal with four legs or anything that resembles a bird.
That, combined with the fact that I have never heard you say an "oo" vowel or an "oh" vowel, are my red flags. So, true to form, I googled the shit out of that phrase. "Toddler without "oo" or "oh" vowels."
That was when my world erupted and things began to fall into place. Before the .5 people who actually read this blog think that I'm off my rocker, I want to say that right now, I'm 2 for 2. I suspected James had an egg allergy thanks to his eczema, and guess what? I was right. I suspected Catherine had some sort of allergy, and guess what? I was right.
And my mom-gut says there is something much more going on with Catherine than I thought.
Catherine's MRI came back "normal." She has a short spinal column, which was noted, but still within the range of normal. She had pansinusitis (inflammation of all sinus cavities) and fluid in both ears, but that fluid was within the range of normal. All other allergy tests came back normal, sans banana and milk. We have tested her for several things, and still, no results have come back waving gigantic red flags.
But yet, my mom-gut says there is something there.
So I googled the aforementioned phrase, and what should appear? Childhood Apraxia of Speech. Reading the symptoms was taxing: it's a complex disorder, and has not been well studied due to the fact that it's an actual neurological defect, but it affects speech. So who diagnoses it? The neurologist or a speech pathologist? Reading the actual stories of people who have blogged about it was taxing. So instead of getting frustrated by all the information pouring out at me, I wrote down every single symptom that any parent, researcher, doctor, or support group had mentioned.
So here is the list and why I am all of a sudden feeling so strongly about this:
Generic Syllable to Describe Several Things
Her daycare provider has been saying for more than a couple months now that Catherine has a word for everything, but it's not the
right word. Sometimes, it's not even close to the actual word. And I have noticed it too. The other day, she saw a dog and said, "Daw!" I couldn't believe it! That's not even a word we had been working on!
But she said it!!!! I was elated. Wahoo! A fourth word! Only to, not even ten seconds later point out and say, "Daw!" But there was no dog. It was an ambiguous white house with some ambiguous flowers and a tree. Not only was there no dog in sight, but there wasn't even a dog barking somewhere else in the neighborhood. I was a bit defeated, but chalked it up to maybe she was still talking about the "daw" we had seen a few houses down. The same for "cat." She doesn't say the word, but she will say "ckckckckc" in the back of her throat. It almost sounds like if you or I were to actually elongate the "c" consonant for someone with a speech difficulty. She points at our cat, and will said "ckckckc." But she will also point to a duck and say the same thing. Which is interesting, because she
was saying, "quack quack" when she would play with her ducks in the bathtub, which I will mention in a few...
Relies Heavily on Excessive Gesturing to Communicate
Catherine is a talker, but with her face, hands and body language. You know when that girl is angry with you, when she is delighted by you, and of course, when she needs something. She has things like the "hand-wave" where she flaps her hand back and forth when she wants you to follow her. Now she has the "hand-wave" combined with the patting of wherever she would like me to set Drew down so that I
can follow her. She points, of course, and she pretends to climb up on everything she would like to actually sit on, like her chair, the counter top and the table. She will pat a chair heavily if she wants us to sit in it, or she will pull our arm if she wants us to get up so that she can sit in it. She will get her shoes if she wants to go outside, but it used to be that she would get her coat if she wanted to go somewhere. She will nod if we guess what she wants, and she will shake her head no emphatically if we guess wrong. No matter what, she is gesturing to us in order to communicate to us. Combined with her sign language, I would say that's a useful thing, but when combined with all the other symptoms of CAS, it's really not.
Sounds/Syllables Omitted (ie. dropping the end consonant of a word)
I realize that Catherine only has three words: Mom, Dad and yeah, but she doesn't say "Mom" she says "ma." She doesn't say "Dad" she says "dah" with an "a" that sounds like apple. Which is interesting, because she can't say "cat" even though she has the "ck" consonant and the "a" like apple vowel. Again, not really compelling on it's own, but when combined with all these other symptoms, it makes sense, which I will mention more of in a bit...
Cognitive Skills Within the Normal or Close to Normal Range
Thaaaaat's Catherine! All of her cognitive scores were in the normal range, which helped us rule out Autism. "She could just be a late talker" would be the automatic response to this one, but again, combined with some of these other symptoms, it's pretty compelling evidence that there is something else going on.
Receptive Language Much Higher Than Expressive Language
The SP from Childserve on Friday, and Heather from the AEA both said that her receptive language is much higher than her expressive language, and it
is. Catherine can pick up a pink towel and wipe Drew's face while Drew is sitting in the Bumbo without blinking an eye. She can find the pacifier and put it in his mouth when I ask. She can pick up said pacifier after she has touched it because she has (had) Hand Foot and Mouth Disease and put it in the sink when I ask. Two-step, and some three-step directions, are not beyond her. She can pick up her shoes and put them in the closet. She can find her shoes in the closet and put them on her feet (not all the way, but she gets the concept, for sure!).
This girl is not stupid and considering the life she has had, it might be surprising.
Behavioral Problems Directly Correlate with the Inability to Communicate
Oooohhhhh, the temper tantrums you can throw, my lovely. Sometimes they are completely out of the blue. Sometimes, they are warranted, but either way, you throw them like a Diva. Complete with apparent double-jointed legs (which I will mention later) and crocodile tears. They are something for the Oscars, and I have no doubt that you are just as frustrated as we are that you are unable to communicate with us what your needs might be. For example, for almost 10 minutes in the car yesterday, you screamed bloody murder. You were flailing in your car seat, tears streaming down your face and I was monitoring my breathing so as to not lose my shit in front of James, who was trying to calm you down. I tried over and over to guess what it was that you were having a temper tantrum about, until I finally, in desperation, pulled off your shoe. Why the hell did you want your shoes off? Well, James had taken his off in the car about 10 minutes earlier. And guess what? You just wanted to be like him.
Hypotonia of the Truncal/Leg Region with Laxity in the Ligaments of the Hips
If you remember back to a year ago when we had our follow-up appointment with our gastroenterologist,
he was the one who mentioned to us that you had hypotonia of the legs and would best benefit from physical therapy. We thought it was because you wouldn't move due to your constipation, but in hindsight, I don't think that was it. I have had more than one witness to your temper tantrums, and several people, even a total stranger once, have asked me if you are double-jointed in your hips/legs. Even I envy the way you would curl your feet up and look at the blisters left by Hand Foot and Mouth Disease this past week. It is pretty incredible. There are times where I have seen you hit yourself in the forehead with your foot during a temper tantrum! When I brought up the fact that your stomach sticks out when you walk/run, the physical therapist stated that it was most likely because your trunk region just wasn't strong enough yet, and that's how you maintained your balance. This was corroborated by our pediatrician at your 18 month appointment, and I remember, somewhere on this blog of mine, writing about it. I thought it was weird, and even when the MRI came back about your spine, I thought maybe that was it, but in the back of my mind, I now believe it has always been this. Beyond all this, you still sleep with your head on your feet, and you have for awhile. You will lay down on the floor like that. Lastly, you almost always sit with crossed legs, "Indian style." You even do it in your car seat. All of these little things I have thought were weird I just chalked up, again, to the fact that you are "developmentally behind" and that things will change. Only they haven't. I also noticed that after you go up the stairs, you want to be picked up, and frequently, after walking a little way, you want to be picked up. I suspect it's because you're tired. I don't blame you little girl. We have had a rough 2 years.
Difficulty Running Smoothly and Throwing a Ball
These symptoms derive from neurological "soft signs" in that CAS is a neurological disorder, so it naturally affects things besides speech. I would suspect that the hyptonia in the legs and trunk lead to the difficulty in running smoothly. And you, little girl, run like a bowling ball on legs. I took a lot of time to observe you running today and noticed that it takes you awhile to get going. You also don't necessarily run, but you lope. If you think of the "gangsta walk" where you put emphasis on one leg, and kind of hop on the other, that would be you with running. In walking, you sway your hips forward to back, A LOT. Again, I thought it was always weird, and some people would say "She just started walking 5 months ago." But again, even my daycare provider has mentioned that maybe all this has to do with her legs, or something because she has this slight lope when she walks, and it's exacerbated when she runs. Exacerbated by about 10,000. Sometimes, she will swing one hand with a straight arm, and I wonder if it's for momentum? You also are terrible at throwing a ball. You cannot throw overhand, you haven't expressed any hand dominance as of yet, and you do this weird wind-up where you wrench your arm back like a softball pitcher and then move your arm outward from your body and
across your body, letting go of the ball somewhere in there. Usually, not where it needs to go. It's pretty interesting to watch, but once again, I chalked it up to you just being developementally behind.
Sensory Seeking:
CAS is actually closely related to autism in that they both have to do with neurological processing in the brain. Interestingly more, it does not resemble autism in the slightest, except for possible sensory overloads. Once again, your daycare provider and I have talked on more than one occasion about you covering your ears when things are even the slightest too loud, and hitting. At one period in time, you were in time-out several times a day, for several weeks, because you would randomly go up to people in daycare and hit them. This can be a symptom of sensory seeking: you want to see what the reaction to others will be because you don't understand what your reaction would be if it would happen to you. You used to hit Drew a lot, and you are still pretty rough with him, but it has gotten better thanks to a healthy dose of time-out.
Lost Sounds or Words
This is a big one. A huge one. In fact, as I was reading and going through these blogs one by one until 1 a.m. last night, this was the one that struck me the most, and it is the biggest red flag of CAS. We have heard anywhere from chair to snack to fucking
dinosaur. I will never forget the time we were all getting ready one weekday morning, and there was some popcorn dad had left in a bowl by the foot of the bed. Naturally, you picked it up and in our desperation to try and get you to say ANYTHING, I asked you what it was. You turned to us while holding a kernel and said, "Popco."
What the fuck???? This was even before you were saying Mom and Dad consistently. I remember that day was one of the better days we have had. I was elated. Fucking popcorn for God's sake! And then we never heard it again. Same with chair. Same with snack. Same with dinosaur. Same with quacking like a duck. And then, beyond that, we have lost your ability to open your mouth and stick out your tongue. You were doing that a month or so ago, and it was hilarious. You loved to make us laugh with it. Now when we ask you to do it, or do it ourselves to model it, you stare at us. And when I did it today to see if it had magically come back. I could see in your little face you were actually trying to figure out how to do that again. You just learned how to put your tongue between your lips and blow raspberries. I would bet my wedding ring that will go away as well.
Cannot Lick Food From Lips or Blow Out Candles
Obviously, this is for the older ones, but I have a picture of James at 15 months licking spaghetti sauce from his lips. Whenever Catherine has something on her lips, she wipes it with her finger and sticks her finger in her mouth. I have always thought it was odd, and I noticed it because I get annoyed that she will then take that finger that still has food on it since she didn't lick it off all the way and touch something on the table with it. Minor, but when I read this one, it became major. It was like a lightbulb went off. She can suck through a straw, but she doesn't pucker her lips to do it. She doesn't pucker her lips to give kisses either, they are still open-mouthed like a 9-month old would give kisses. And she didn't blow out her candles on her birthday cake, no matter how hard we tried to get her to. Again, all these things are so little and minor, but putting them together with all the others has been eye-opening.
Difficulty Combining the Consonants and Vowels They Do Have
Holy. Shit. This one struck a chord with me as well. She can say "da" for Dad but can't say "Cat?" Even though she has the consonants and vowels from other words. This is a classic sign of CAS. Because of myelin delays (which I could bore you to death with thanks to my education as a teacher and fascination with this very subject), kids with CAS frequently have inconsistent errors, and usually only when imitative speech becomes automatic can the errors subside. But they can still be there. It's spontaneous speech, which we take for granted, that is most difficult for them. That's where the errors come in. Catherine said "da" for just about everything, but when asked who Eric was, she would not say "da." In fact, she still doesn't. But that's how she addresses him. I have made comments to friends that I think she knows the words Mom and Dad, but I don't think she knows that is who we are. Now I realize she probably does, she just can't say it. With at least a year of repetition, we have finally gotten her to say "ma" and "da" but when I put it into perspective this weekend, I realized just that:
it has taken us a year to get our daughter to produce two words. So that makes me wonder, how long will I have to wait to hear her tell me she loves me?
Consistently Makes One Sound That is Easy for Them
For Catherine, that's "mm mm mm." No joke, we hear that everywhere from 1 to 3 seconds. The urgency in her tone will change either with the urgency in her command ("follow me") or frustration that we don't understand her. This is why we first began to suspect autism. Either way you look at it, "humming" like that is not within the normal range of little people. It's "different" and I always thought it was strange, but again, chalked it up to the fact that maybe we just have a quirky little girl. She says "mm" when she shakes her head no, and she says "mm" when she is off to grab her shoes. It's all. the. time. She will say it when she is addressing us or playing with Drew. Again, it's all the time. Also, the "da" is all the time. And the "ck" sound is all the time. There are no other words or phrases that we have heard. I have said to multiple people, several times, that I wonder if part of her tongue might be paralyzed (again, it's a thing that I studied in college and I could bore you with it, but I won't), but again, it's been poo-pooed, most likely because it's so rare.
Does Not Talk When Playing with Children
Catherine consistently communicates the same way with everyone. "Mm mm mm." Sometimes "da" but that's mostly for myself, Eric and Christy, our daycare provider. She does not talk. She plays pretend well, but she will not talk. Again, people would say it's because she's not talking yet, but as many parents know, kids are very different when playing with other kids rather than interacting with adults and their parents. You would assume that there would be something there.
Drops Final Consonant from One-Syllable Words
Again, with the "mom" and "dad." Even when she had the "quack quack" for about a month, it was never "quack-quack" it was always "qua qua." When she said "snack" it was "sna" and when she had popcorn, it was "pop-co." I wonder if I have ever heard her said a full word with complete articulation. I don't think so.
Parents/Care Providers Often Suspect Autism
While we were in the trenches of running tests on Catherine, and when I decided I was going to be her best advocate, Eric and I took separate autism tests on the Autism Speaks website. Eric scored her at a 1, I scored her at a 2. Needless to say,
not autistic. When she was evaluated by the AEA, it came back that all her cognitive abilities are within the normal range (albeit, the lower normal range, but the normal range nonetheless), so obviously,
not autism. But there something going on with my little girl, and with autism being such a wide spectrum, I figured she was on there somewhere. And let me tell you, some of my best, brightest, and incredibly weird students have been on the spectrum. Austistic students actually make great music students, because music accesses a different part of the brain that can be used in communication. Hence why music therapy for autistic students has blown up in recent decades, and why autistic savants are usually gifted in math or music. Again, I could bore you to death, (or not, because it's really fascinating), but essentially, we suspected autism fairly early on. Especially with the loss of the words/actions. Once we heard words and then she lost them, I thought for sure we would get an autism diagnosis, but such was not the case. Again, as I mentioned before, CAS is actually very closely related to autism, but does not resemble autism but for any expressive language delays. Interesting.
Sometimes Has Food Allergies due to Lack of Nutrients or Malabsorption
Again, this one struck me right in the gut. In fact, it struck me, and then sat there as I back peddled my way through her life, and then fast-forward again. The sleepless nights, the breastfeeding, the crying, the cluster feeding. Then she started on solids, and all was well. Not great, but well. I went through my blog posts in her monthly updates from her first year of life, and several things jumped out at me, which I will mention below, but none such as the lack of nutrients or malabsorption. These two things were brought up to me by several people, several times, as an explanation for her constipation. And then when she was recently diagnosed with a milk allergy AND banana allergy, I thought for sure that was it in the beginning. But I truly wonder if it was.
The Conclusion
There were a couple of things that also came up that Catherine does not have, but I wonder if they would appear later on. For example, one of the symptoms was "groping" for words. I watched a few videos on YouTube, and this was pretty apparent, which made the diagnosis pretty easy to identify. Essentially, the word describes the action perfectly - the child gropes for the articulators to work. They will move their jaw back and forth, or purse their lips together when trying for an articulation that uses the back of the throat instead. It was interesting to watch, and something that Catherine most definitely does not have. Other, smaller symptoms had to do with stringing together longer sentences, which again, Catherine cannot do. I wonder, though, if this would be a symptom if she could. I would say time will tell, but I am determined to get her the help she needs before it gets to that point.
Fish Oil
So in my journey through blog after blog and article after article, the diagnosis wasn't that great because there is no cure, typical speech-language treatments don't work, and Catherine will need to undergo intensive therapy, and most likely have an IEP/504 plan when she enters school. She will most likely be taken out of class for speech therapy, and we will have to be diligently working with her at home for her to even make the smallest amount of progress. However, the silver lining is that it is called
Childhood Apraxia of Speech. Empasis on the childhood. But after reading and re-reading articles, I tripped across one on page 9 of my google search that described fish oils as a recommended treatment.
Back to the myelin delays that don't show up in MRI's. Also a disclaimer: this might be boring, but to me, it's fascinating. Myelin is the electrical cord that connects all the things that need to go right with speech and sends it to the articulators to make them work in tandem. If you think about it, it takes a lot to actually speak spontaneously. An idea has to form, and you have to articulate that idea using thousands of muscles and breath support/control in order to form a coherent sentence. In kids with CAS, experts who have actually studied it think that there are myelin difficiencies, which is why not only is speech the main thing that's affected, but there are also neurological "soft signs" as well. Fish oil, apparently helps to repair those deficiencies, and after googling the shit out of "fish oil and apraxia" I found that some parents, when using the right dosages, saw almost insant results (within days). That's not to say that there wasn't still a long road ahead, but simply that their child's articulators (the tongue, soft palette, lips etc.) began to work much more than they had before. It's not that Catherine doesn't know how, or that there is a delay there, it's that she actually cannot send the right signals from her brain to her articulators. It's quite fascinating when you think about it in that context. Like I said before, she's not stupid, she's not a brat, she literally cannot do something she wants to do.
So I loaded up the kids (segue: I had it in my head that today was Father's Day, so much so that I actually got Eric a present and took care of all the kids all weekend... so a road trip with the two older ones was in order) and headed to Whole Foods, where I knew they had the fish oil supplements that I needed. I came home and gave Catherine a very small dose, although I wanted to go gung-ho the first time out, but know it could be bad for her. When she woke up from her nap, it was like there was a new understanding. I know this is crazy, but I remember at one point I looked into her eyes and it was like we understood each other. For so long, I thought all of this was because we are so much alike, she will just be closer to her dad, she's a daddy's girl etc. But I think deeper than that, she just wants to be loved, and maybe she felt like I wasn't doing that. I looked into her eyes, and I saw a brightness that was there which I haven't seen before. It was like she knew that I'm fighting for her, and she was so grateful, in that moment. It was an incredibly clarifying moment for me as her mother. Normally when saying something like that, I would make a joke about how it might have been about the popsicle I had given her just before that or something, but in it's entirety, I can't joke about it because it was so real. There aren't really words for what passed between us, but I think she knows I am fighting for her with everything I have. Deep down, she's tired of not being able to communicate either.
What's most interesting about all this is that I'm fascinated by the brain. I am fascinated by how music works with and for the brain. I have an education and background that helps me to easily understand the vocal anatomy. Anyone reading these articles might have been clueless, but thankfully since I know how the vocal cords work, and the structures that surround them, and how to engage the breathing mechanism. I was put on the earth to be Catherine's mother. There was a reason for it, and I think this is it.
Lastly, last night when I was frantically looking through these articles, I found the article which had the symptoms that struck me the most, from a mom in Maryland who was simply blogging about her journey to finding her child's voice. And I glanced at the clock on my phone. 11:11.
Long story short, some people who are greatly superstitious believe that making a wish on 11:11 will help that wish come true. To me, it's my dad's birthday. November 11th. 11/11. And last night, while light bulb after light bulb was going off in my brain, going to war with the skeptical side of my personality saying, "Could this really be it?" I glanced at my clock, and there it was, plain as day: 11:11.
I thought of my dad a lot today, thinking about what he would say if I presented this information to him. And I saw it, clear as day. "Well, then you have to pursue it."
I put in an email to my pediatrician outlining all the symptoms I found and how Catherine meets all of those (much like I did above, only an abridged version), and plan to put in a call to the Speech Pathologist at Childserve tomorrow. I will call my pediatrician tomorrow to make sure she got the note, and I also plan to hit Heather from the AEA with this knowledge on Tuesday, after she asks me about Catherine's progress and I tell her that none has been made on Catherine's end, "but here is the progress I have made."
Catherine doesn't really have a voice yet, so it's my job to be it for now. The information is overwhelming and the methods with which parents have engaged their children at home is wealthy. But I am going to take it one day at a time. We are starting with sight words on the fridge and fish oil. From there, I plan to make up some songs about making faces to get you to try and manipulate your articulators (sticking your tongue out at me, puffing out your cheeks etc.) And we'll go from there.
I love you little girl. I hope someday I will hear that you love me too.
Edited to say that we heard back from our pediatrician this morning at 7:45 a.m. The first sentence of her email was, "Wow! This does sound a lot like Catherine!" And from there stated she would di some research, call the University of Iowa Children's Hospitals in both the neurology department and the developmental departments and get back to us soon. I am elated, relieved and sad all at the same time. But so thankful I am being heard, because for too long, Catherine wasn't.
