Words Ethan is using.

Ethan has experienced a very recent burst of language. Over the past few weeks, these are the words he has started using regularly.

1. “ca-kuh”
Cracker. Used as a label/request. This is cool. This may be his first actual direct identifying label-word.

2. “wah-bum”
Used as a request for water, or other drinks. Does not use as a label to identify liquid (i.e. has no visible understanding of the bathtub being full of “wah-bum”, etc.).

3. “up”
Used as a request for being held, or being placed somewhere “up” such as the counter or a tabletop. Never used as a directional description (i.e. “Where is the sky?” means nothing to him.) He only does this because I went for a time refusing to pick him up when I knew that was what he wanted unless he spoke the word.

4. “wow!”
Used exclamatorily, in reaction to unexpected or loud events. He learned this from a kids’ video, and he copies the intonation, key, and expression quite accurately. We encourage this by mimicry as often as he uses it.

5. “yum-yum” or “num-num”
Used to express positive feelings about food. He uses it in two contexts- Pretend, as in when he sees people enjoying something in a book we’re looking at, he will occasionally describe them with “num-num.” or when he hands me a toy tea cup he has filled with imaginary tea, he proffers it saying, “num-num.” Secondly, it’s was as close to “thank you” as he got for the past several months. If I gave him something that he LOVES, like chocolate or etc, he would eat some, and then offer with a smile, “num-num.” He has recently (this week) begun using "dik-duh" instead.

6. “buh-bah, duh dah”
His approximation of “bye-bye.” I still don’t know why he echoes himself. Perhaps he is mimicking the chorus of good-byes everyone gets in our house when they leave, with several people talking at once. I have no idea. He did finally begin a crooked wave to go with this, after two-and-a-half years of no gesturing.

7. “e-a-eee” or “yay”
Exclamation of happiness or pleasure. With enough repetition and drilling, we encouraged him to include clapping with this expression. He wants to, needs to, demands to hear this from us, complete with the clapping, whenever he performs something we are trying to get him to do.

8. “oh-ch”
Ouch.

9. “shh”
Accompanied by placing his finger over his lips, or over yours.

10. “ttht”
A perfectly unmistakable sound he makes when he sees a lighter. He will bring lighters to me and make the sound, which sound EXACTLY like the sound of lighting one. He also brings candles to me and makes this sound, connecting the object “candle” with the object “lighter” and describing the action that links them with the noise it makes.

11. “they-e-yiz” or “they-yiz”
Almost non-syllabic approximation of “There he is” in response to “Where’s the baby?” (this is not a question, it is a routine. He participates in the game.) Even if we were not previously playing, if I say “Where’s Ethan” in that special sing-song he equates with the game of Peek-a-boo, he will look sneaky, and wait, and sing “they-yiz” in a matching tone of voice. I am relatively sure he has no understanding of these individual words, only the game around them, which he LOVES.

12. “eyes”
I have countless times placed him on my laps, poked my own eyes, and said, “Mommy’s eyes” in the same lilting tone. Then I touch his eyes, and say, “Ethan’s eyes.” First he just sat there and looked at me, and after several months he started jabbing me in the eyes in response. Then after a couple months of this, just a month or two ago, I can now sit him on my lap, and say “Where’s Mommy’s eyes?” If I enunciate “eyes” in the special tone of voice, he will now mimic me, and jab himself in the eyes. He now pokes his toys’ eyes and labels them, as of the last few days.

13. “woof-woof”
A sound more than a word, amazingly accurate representation of a dog’s bark. Will point to picture of almost any animal with four legs and make this sound.

14. “dik-duh”
Thank you, or a rough approximation thereof. Usually used preemptively, as in he will gesture for something and say it as if it were please. Then when you hand it to him he will say it again. Its usually accompanied by eye contact and a smile.

15. “leh-yeh”
Love you. He’s started using this more frequently now.

16. “hluh?”
Hello. Will say this only into a telephone so far.

17. “Hai-i. Hah-yuh.”
Hi, how are you? Used as a greeting/conversation opener.

18. “good-yahb!”
Good job! He uses this correctly, as affirmation that you’ve done something right, and also as a request for your approval.

He uses a plethora of descriptive noises, compare with #6 above, loves to mimic noises (BOY STUFF!), and will sometimes attempt a hum or non-syllabic sing-song to match a word we are trying to get him to say. But what he’s best at? High-pitched, ear-shattering screeches. These and guttural, belligerent bellows are his catch-all communication. Frustration, anxiety, anger, confusion, over-stimulation, stubbornness, excitement, exuberance- and these are all closely linked for him and can slide unpredictably from one to the next and so forth- all are communicated with eardrum-rattling screams.

Two most recent developments:

1. The recognition of numbers as quantifying a set of similar objects, the visual recognition of numbers, and semi-accurate identification of numbers on rare occasion. For example, he was paying rapt attention while Ti’anna and Dad were playing Myst (a computer puzzle game), and they got to a part where you are supposed to match numbers. There was a 1,3,2 progression on the screen, from top to bottom, and he pointed, and said “ahn” very nasally, “feh” and “duh” and named them correctly. Yesterday at the library, we were passing the encyclopedia, which all look alike except for a small number on the spine, and he began poking them and making a counting song with nearly consonant-free nasal sounds approximating the letters. He recognizes that shapes that are numbers, and equates this “counting” sing-song with them, as well as the act of pointing to each number in sequence. I feel really good about this. He will count to ten now with these approximations, if you count along with him. He will be one number ahead of you.

2. Humming a recognizable tune, complete with clicks of the tongue for drum beats, but using inflections of voice only. When we get to the end of the song, “He is that hero,” there is a pause, and then the hero shouts haltingly “I AM THAT HE-RO!” Ethan will sing this with feeling in identical tone and rhythm as “UHN UHN UHN EYH-YOH!” I don’t even have to sing the whole song, just the click the drum beat with my tongue, and he will start in on it. If I sing the next-to-last line and stop and look at him, he grins and does the last line, right on cue in key. Very cool.

The sound, the feel, the look... of Gravel.

Ethan, nearly bowled over with the thrill of gravel, and its texture beneath his feet.

What is PDD-NOS, anyways?

"What is a developmental delay? As mentioned, healthy development follows along a predictable path. When a child is obtaining developmental skills along the predicted path but more slowly than expected, they are said to be delayed. For the purpose of illustration, let's look at a car ride. Our destination is 60 miles away and we can go between 45 and 60mph. That means our estimated time of arrival is somewhere between 1 and 1.5 hours. This represents normal development. In the case of delayed development, the car does not change its course, but arrives two to three hours after the expected time. Let us apply this concept to child development. If a child moved its total body as an infant, but was slow to sit independently, and did not walk until close to 16 months of age, one could say that this child is progressing at a slower pace than his/her peers. This progress is not different. It is just delayed.

What is a developmental disorder? When we speak of a difference in the pattern or nature of the developmental process, we are speaking of a disorder. Categorizing into groups those behaviours or differences that set some children apart from their peers defines a developmental disorder. A well-known developmental disorder is Attention Deficit Hyperactive Disorder (ADHD). Children with this disorder have in common the inability to focus their attention appropriately and they have a high degree of physical activity. They have a common group of characteristics that are different from their peers, yet similar to each other. Therefore, ADHD is said to be a developmental disorder.

Children with developmental disorders are not merely slow in obtaining skills. Applying this case to the concept above, children with developmental disorders are not travelling at a slower pace, they are travelling a different route altogether. They may arrive at the same point eventually, but they will need some help and guidance along the way. They either have a different way of acquiring appropriate developmental skills than expected, or they have a lessened capacity for acquiring certain skills.

What is Pervasive Developmental Disorder? Pervasive Developmental Disorder (PDD) is the diagnostic terminology for a group of individuals who present with an underlying impairment in the communication process and connectedness to the world around them. This impairment in turn pervades over all areas of development. The inability to fully connect, or relate appropriately to one's surroundings greatly influences learning and the pathway development. As mentioned previously, a developmental disorder entails a compilation of characteristics that set the group apart from their peers but in common with each other. In the case of PDD, the characteristics include impairments in the areas of language and communication, socialization, and use of imaginative play. The disorder is viewed as a spectrum disorder because there is a great deal of variability in the presentation of the disorder along a spectrum of severity. Therefore, the diagnostic terminology of Pervasive Developmental Disorder (PDD) is an umbrella term that encompasses a continuum of impairments in communication, socialization, and play repertoire." -Pervasive Developmental Disorder: An Altered Perspective, Barbara Quinn

PDD is a category of developmental disorders whose effects are pervasive. Within this category, there are five sub-categories: Autistic Disorder, Asperger's Disorder, Childhood Disintegrative Disorder, Rett's Disorder, and PDD Not Otherwise Specified, or PDD-NOS. The category of PDD has in the past been referred to as Autism Spectrum Disorders, or ASD. Each of these five sub-categories are characterized by the above-mentioned triad of areas of impairment, and are set apart from each other by how they rank in these three areas in relation to each other.

Autistic Disorder
A. Must have all three:
1. Qualitative, or measurable, impairments in social skills
2. Oualitative impairments in language development
3. Restricted and repetitive patterns of behaviour, interests, and activities
B. Usually accompanied by delays in cognitive development and testable IQ<70
C. Behavioral symptoms observed prior to three years of age

Asperger's Disorder
A. Must have both:
1. Qualitative, or measurable, impairments in social skills
2. Restricted and repetitive patterns of behaviour, interests, and activities
B. No delay in language development, although social language may be peculiar
C. No delay in cognitive development with an IQ>/=85
D. Symptoms can be rather subtle or even undetected until the child is over three years of age

Childhood Disintegrative Disorder (CDD)
A. Apparently normal development until at least age 2
B. Followed by a significant loss of skills in at least two of the following areas:
1. Expressive or receptive language
2. Social skills or adaptive behaviour
3. Bowel or bladder control
4. Play skills
5. Motor development
C. Regression resulting in the presence of at least two of the following:
1. Qualitative, or measurable, impairments in social skills
2. Oualitative impairments in language development
3. Restricted and repetitive patterns of behaviour, interests, and activities

Rett's Disorder
A. Must demonstrate ALL of the following:
1. Apparently normal early development during infancy
2. Normal head circumference at birth
3. Regression of motor and social skills that occurs between 5 months and 2.5 years
4. Deceleration of head circumference growth between the same time period
5. Repetitive hand motions such as hand-wringing or hand-washing actions
6. Poor motor coordination, especially gait and trunk (upper body) movements
7. Although has been able to use hands effectively as an infant, now has difficulty with any tasks that involve hands
8. Severely impaired expressive and receptive language development

PDD- Not Otherwise Specified (PDD-NOS)
A. Must show some degree of qualitative impairment in:
1. Social skills, OR
2. Language skills, OR
3. The presence of restricted and repetitive patterns of behaviour and interests

-Demystifying Autism Spectrum Disorders: A Guide to Diagnosis for Parents and Professionals, Carolyn Thorwarth Bruey, Psy.D

More on this triad of areas and what each functionally includes can be found at the link I posted yesterday, here. Ethan's problems are not merely a delay, but a disorder. He marches to the beat of his own little drum, learns things in a different way, with different perspectives, not limited ones. I just want to get inside his head and be able to at least imagine how he sees the world, learns from it, and uses it to go on the next intersection, mapping his way to grown-up.

Frustration...?

Okay, so after waiting two weeks since the hearing screening, we were finally seen at the local clinic. The ARNP sticks an otoscope in Ethan's ears and says, "Actually, there's no wax in there. But he does have raging ear infections in both ears." She scribbles off a prescription for antibiotics, sets an appointment for a month from now for a recheck, hands me a pamphlet I've already gotten three copies of from various medical professionals on why I'm a bad parent for not immunizing, and sends me on my confused way.

I'm paying cash for all this. Still no answers. Tim and I both had CHRONIC ear infections as kids. Tim had tubes put in, and they wanted to do the same to me. I so do not want to start on that road again- I don't want the little guy to spend his entire young life on antibiotics like we did. I built up a huge tolerance to the stuff, suffered from yeast infections, etc etc. and still got an ear infection every time a foul bug showed its face in our house.

So that's my answer? I still don't know why he can't talk. If I'm so smart, why do I feel so incredibly stupid all the time? What if they're wrong? These are the same brilliant folks who smeared antiseptic cream all over five-day-old Ethan's life-threatening strep infection and tried to send me on my merry way. Thank God I insisted on a culture. By insisted I mean refused to leave until he showed with a new blister/bullae and shouted about it until they HAD to "humour" me. Turned out he could have been dead inside a week had it gone untreated. (Read more about Staphylococcal Scalded Skin Syndrome here.) I did my homework, I knew it was a big deal, I knew what to fight for.

I've done homework. I know it's a big deal. I have no idea what to fight for. I'm scared, and confused, and I feel like every day that I allow to pass I'm losing options. Everybody has an opinion on this, but no one knows Ethan like Tim and I do. I feel that at this point, if I had him thoroughly examined and documented, if I managed to find a speech-language pathologist and a group of various therapists who were experienced in administering tests to non-verbal toddlers somewhere four hours' drive from here, and somehow found a way to pay for all of that, their diagnosis would be PDD-NOS. (See the difference between this and clinical autism here. Ethan has several issues in groups 2. Communication and 3. Behaviours and Interests but none in group 1. Social, which is the main indicative group for autism or Asperger's.) There are no real answers for PDD-NOS. That's the "not otherwise specified" bit. Ruefully, I laugh- but there's no humor in what I'm feeling. The only answer to the questions I have are more questions.

Football, nerd-style

"Hey, Mom," says Ti'anna, emerging triumphant from the bathroom, reaching up to flick off the light. "My teeth were playing football while I was on the toilet."

"Your what?" I said, laughing. I laughed for a whole minute, reiterating her declaration to Dad as he walked into the room. Ti'anna exited, nonplussed.

A few minutes later, as I continued stirring the soup, Ti'anna came up to me and pulled on my pants' leg. "Hey, Mom," she said.

"Yeah, honey?"

"Wanna see my teeth play football?" I nodded, and she grinned up at me, opening her mouth wide to reveal a cough drop. She tossed it from one cheek to the other with her tongue, her teeth tiny goalposts in the pink of her mouth. "See?"

Update on Ethan's Ears

"Have you ever seen Shrek?" says Mrs. Dillon, the RN who helped with Ethan's delivery, and is peering into Ethan's ears. I called her this morning and asked if I could bring Ethan over to her house so she could peek in and check for ear infection with her otoscope. She kindly obliged, and it turns out his ears are packed with copious quantities of wax. Enough that the eardrum is completely obscured! Lyn (Tim's mommy) tells me this is common to all her boy children. I guess it's hereditary, or something. Lyn writes:

All my boys have chronically huge amounts of cerumen in their ears. We call them monsters, and we're always battling the problem. Tim once came into my room announcing he couldn't hear, and after a panic stricken trip to the urgent care, came home proudly toting a piece of wax the size of a birthday candle that came out of one of his ears. Joey [Tim's little brother] just had to have his ears cleaned out today because he couldn't sleep last night due to the pressure from the impacted wax. The PA who worked on him announced, "Wow this stuff is like cement," which really wasn't surprising to me... Judah [Tim's other little brother] has the problem too, though so far, we've been spared any medical intervention.

So we're starting there. Wax removal is something I will trust to our local family doctors here in Forks- I just have to head over to the walk-in clinic this afternoon and see if they have time to fit him in. I'll let you all know what happens. This is certainly not the cause of all of Ethan's problems, but may be a significant piece of the puzzle. I am interested to see what will happen when the wax is gone. Will everything seem too loud and overwhelming for him; will he cry? Will he have scars on his eardrums from chronic undiagnosed otitis media? Sheesh.