Terror

I’m going to give some very direct talk about where we’re living right now.

Daphne’s 2nd birthday is the end of this month, and she still isn’t speaking.

According to nearly everything we’ve read and heard, she should be putting together two word sentences by now.  Things like “want milk” or “look doggy.”

She did say, “no, no, no…” for a few days back in January but, as I mentioned, she stopped doing so shortly before I wrote that post. Around that time she also repeated “dahk” a few times after we’d turn out the lights and say, “dark” to her. Then she never said it again.
There are moments when I think she’s saying “da da,” but it’s quite possible she’s just babbling and there’s no real meaning behind it. Although she has in the past screamed, “DADADADADADADADA!” when she wakes up at night.  And this past weekend during one of her meltdowns at the wedding she was yelling, “MAMAMAMAMAMAMAMA!” when I was walking her around outside to calm her down.  When I took her inside to Jenn she stopped crying immediately, so that seems like actual verbal communication, albeit as a result of severe distress.

A few other things we’ve noticed:

She doesn’t often respond to her name.  I’d say she looks up at me about 40% of the time when I say “Daphne?”  We also witnessed a family member saying her name over and over, right next to her, at the beach house a few weeks ago, and she never once acknowledged it or looked up.  Although on Monday when I came home from work I stood in the hall and called her name just once. She heard me, jumped up, and ran into the hallway to give me a hug. I tested this again on Tuesday morning when she was playing with Alphapup.
“Hey, Daphne?”
After a second she spun around to look at me.  And when I said, “Do want your juice?” she left the dog behind and came right over. Conversely, this morning I was saying, “Daphne? Daphne?” right next to her and she completely ignored me.

She doesn’t point to ask for things.  Although honestly she doesn’t really ever ask for things…  This might be because we’re constantly anticipating her needs and/or carrying her around? (Which we’re told might also be the reason she isn’t talking.  She simply doesn’t need to because we already give her everything.)  I tried moving her milk out of reach last night to see what she would do.  Once she noticed it was on the table she reached for it once, immediately surmised that she couldn’t get to it, and then grabbed her mom’s arm and whined a bit.

She also doesn’t show any interest in other kids.  She doesn’t avoid them, she’s just indifferent to their presence while she’s playing. This might be the whole “parallel play” thing, which I’ve read is common at 2?  But it’s another slight concern.

And finally, she hand flaps, although only when she’s excited. It’s not something she does all the time and, once again, I’m told that lots of toddlers do this. But it’s just another tick in the boxes, you know?  Much like her occasional tiptoeing.  We just don’t know how much of this is normal.

I mention all of these because they are a direct result of our going through the questions in the M-CHAT test a few nights ago, which came back with a report of three horrible words:

RISK FOR AUTISM.

About 5 of the 20 questions were signs pointing in that direction, and a couple others were negligible and could’ve gone either way.

Couple that with Jen’s regular confession that she feels like something is wrong, and you have a couple of very, very, VERY terrified parents on your hands.

Now, to offset the above signs, she does point at everything in her books, which we still read countless times a day.  Conservatively, I’d say we read 30 books each day to her?  Sometimes it’s once and done and on to a new one, sometimes it’s the same book 7 or 8 times, sometimes it’s the same 3 pages of one book. Regardless, she points at objects in them and waits until we’ve said what it is, then she points to the next one on the page, then the next, until we’ve labeled them all and then she turns the page and starts again.  (This doesn’t happen in every book, mind you.  Just the ones with obvious single pictures with labels like the Baby Einstein books.)  We also play a game every night before she goes to bed where she points at her posters, and I say the word or letter that matches the picture, sometimes in a funny voice.  “Robot. M. Jellyfish. Z. Stonehenge. Mountain. H. Etc.”

She very recently has started bringing things to show us.  She took my picture off the fridge last week and gave it to me when I was on the couch. And yesterday she got up, handed Jen her toy octopus, and smiled up at her when Jen said “thank you!” before going back to play with her other toys.

Speaking of toys, she isn’t obsessive about them.  Meaning she doesn’t line them up or stack them or get aggravated if you move them.  Quite the opposite actually.  She knocks over all the block towers I build and shuffles all her opposites tiles around on the floor into a total mess.  She can, as I’ve mentioned, match those tiles up quite well though.  She’s even started to remember a couple that don’t have obvious visual clues.  (Like the light feather goes with the heavy dumbbell, for example.)  She knows all of the farm animals and can point out each one when asked.  She also matches them up and sorts them, meaning she’ll pick up 2 pigs and set them aside, then pick up two cows and do the same, then 2 horses, etc.  Then she throws all of them back into the mix and does it again. This might be a concern except she’s pretty indifferent about where they go.  She just tosses them to one side after she pairs them and makes an, “ihhhhh” noise.

She’s also attempting to repeat certain things when we say them.  For example, when I read the jellyfish page in “The Pout Pout Fish” I typically do so with a lot of “shh shh shh” inflection, as if the jellyfish has to squirt the words out.  (“Hey Mishhter Fishhh wish your daily shcaly shcowl, I wishhh you wouldn’t greet us wish a grimash and a growlsh.”)  She now grins and goes, “shh shh shh shh” along with me when I read that page. I’ve also noticed she’ll sometimes purse her lips into an “O” when I say “pout pout” or “hippooo” or a some other words with a strong “O” sound.

Physically, she’s absolutely thriving.  (Or at least she appears to be.)  She’s extremely big for her age and seems relatively steady on her feet.  She eats very well.  She’s a great sleeper most nights. She can navigate around the dogs and her toys on the floor without tripping, and runs all over the house without falling most of the time.  (Unless she’s tired, in which case all bets are off on her steadiness.)

Basically, it seems like for every sign that she might have a problem, there’s an offsetting one that says “don’t worry, this is normal.”

For example, today at the library for “Toddler Time” she was apparently having a fantastic time playing, right up until it was time to do a craft. At which point she had a complete screaming meltdown for no discernable reason. Now, once again, I’m told that 23-month olds DO have random temper tantrums. But it’s yet another check in yet another box, and we’ve gotten to the point where it doesn’t feel wise to ignore this many signs.

And in the end, it all comes back to one definitive, undeniable fact.

She’s about to be 2, and she isn’t talking yet.

I finally overcame my denial about this (I’d been shutting my wife down pretty hard whenever she voiced concerns about it and for that I’m truly sorry, sweetie.  I wasn’t ready to deal with the possibility there might be something wrong.), and did some Early Intervention internet work on Tuesday afternoon.  I found the number of a local place called Texana Center, and we have a call slated with one of their caseworkers for sometime next week.  And if she finds there’s reason for us to come in for an evaluation, we’ll schedule one and take the next steps.  Also Daphne’s 24-month checkup is in a month, so I’m sure we’ll talk about this to her doctor as well and get some advice.

In the meantime, every day for me is like wading through syrup.  I’m anxious and frightened from the time I wake up until I finally pass out from exhaustion at night.  And as a result I’m seeing more and more signs of autism in Daphne that may very well not be there, because I’m becoming slightly irrational in my attentiveness to all that she does. Every time she squeals and runs around the living room, or drops her crayons instead of coloring, I worry about it being a behavior that’s somehow “on the spectrum.” In fact, she might very well be ignoring me when I say her name now because I’ve been doing it so often this week that she’s already bored with that game.

Nearly everything she does sends me scrambling for my phone to see if it’s “normal.”  Like, for example, last night Jen was reading a book aloud to her while Daphne played with some little stacking cups on the floor.  Daph would look up each time Jen paused at the end of a page, reach up and turn the page in the book, and then look back down and continue with her stacking/sorting as Jen continued reading.
Normal behavior?
Autistic behavior?
Multitasking?
I’ve no idea.
But it’s a very difficult topic to Google, I’ll tell you that.

I realize this is a ridiculously long post, and if you’ve made it this far I apologize, but obviously I’m really scared right now.  I just want my little girl to be okay.  The normal life that I’d hoped for her feels like it’s fading away and the future is suddenly a terrifying place.

Or maybe it isn’t?  Maybe she’s just a late talker and I’m working myself up for nothing?  God, I really, really hope that’s true.

But In the end, I don’t know.  And that’s the worst part about it.

Anyway, I tend to confront things in writing, and I just needed to get all this out. Sadly, it wasn’t as cathartic as I’d hoped. I honestly don’t know if I can keep up the daily posts here right now (this was pretty taxing) but I’ll be sure to update everyone once we hear something.

j.s.

3 Comments on “Terror

  1. I’m sorry that you have this terror. I think with autism so prevalent now it is hard not to. I felt it too. One thing I noticed with our kids is that we did everything they wanted without them having to ask for it so they never needed to talk. We have a friend who is an autism behavior therapist and I noticed that when the would interact with Lily she would have Lily ask/repeat things she said. For example she would have her say “down” when she was holding her if Lily wanted down instead of when Lily squirmed/did the whole try to throw herself out of arms thing when she wanted down. Our friend would just repeat it until she said it then set her down. I don’t think our friend even knew she was doing it or doing it on purpose it was just her job everyday to work with kids who did need that kind of push so she was just doing it with Lily. Also while Lily was a crazy early talker Will didn’t have that many words at two. I think I still have a note on my computer with the few words that he did say that I was going to take to the doctor for his two year appointment and then he just started speaking more and I stopped counting the words he knew. I’m hoping that all is well with Daphne and after reading your post I see many of the behaviors you described as normal toddler behaviors that my kids did too. And if reason for concern is found early intervention is the key and it looks like you’ve already put yourself on that path. Lots of love to your whole family. -kim

    • Thanks so much, Kim. I appreciate that more than you know.

      Our first evaluation is this Wednesday, so we’re hoping/praying for the best.

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