Food fight

I’m sure I’ve mentioned here before (and if I know you in person, likely complained about it to you extensively) but we’ve had a long-running issue with Daniel throwing food. Not just, dump-his-plate-at-the-end-of-a-meal throwing, but can’t-put-more-than-one-bite-on-his-tray throwing. He would also throw his plate, cup, or silverware, if HEAVEN FORBID you try to set that on his tray. It’s been A THING. I can’t remember if it started when we moved out here, or if it started before that, but it’s been going on for a long time. I talked to his PT and his speech therapist when he was in early intervention. They made some suggestions, but nothing helped. I’ve talked to his speech therapist and his preschool teacher now that he’s in preschool. Again, nothing helped. But then! Last month he had an appointment at the Down syndrome clinic here at Children’s (because they like to see kids once a year to check in) and you know what? They have a behavioral psychologist! Who specializes in kids with Down syndrome!

Y’all. He was so helpful. (I mean, OF COURSE, but I don’t know that it would have occurred to me to seek out a behavioral psychologist on my own.) Anyway, he asked what the problem was and how we respond to it (pretty much just saying “don’t throw stuff”). And when he learned that it had gotten bad enough that we’ve just been straight up feeding him (because he would throw LITERALLY ANYTHING) he said, well, you know he’s got you trained, right? I laughed because OH YES, I’M AWARE. But then he said that he could tell Daniel is very socially motivated. Which, YEP. He loves people, and loves for them to pay attention to him. So what we needed to do was to make it so that the undesired behavior gets no attention. None. Here’s the strategy he gave me. At each meal, sit facing Daniel, focused completely on him. Put food on a spoon/fork and hand it to him. Give him lots of praise for feeding that to himself and giving back the silverware. Lots of interaction. Then any time he throws something, turn away, and don’t interact with him at all for 30 seconds. After the 30 seconds, start again as if nothing happened. He recommended doing this for each of the 3 meals, plus having 3 “practice sessions” per day. (Now, I don’t know if you know this, but we also have 3 other kids and our days are kind of busy sooooooo, I never actually did any practice sessions.)

First of all, do you know how hard it is to not react AT ALL when your kid throws food on the floor? Harder than I thought. Also, 30 seconds is kind of a long time. But, IT WORKED. He’s certainly not perfect but it is SO MUCH BETTER than it used to be! We’ve graduated to being able to set his plate on his tray, at which point he’ll feed himself 2 or 3 bites and then either point at the table or pick up his plate to hand it to you. (I don’t know why he dislikes having it there, but WHATEVER I DON’T EVEN CARE.) He’ll feed himself an entire meal! This is huge for us. So. It’s been awesome.

Evaluated

First of all, let me start off by saying: I have no negative feelings about the evaluation or Early Intervention. I love Early Intervention! I wasn’t dreading the evaluation or hoping they would tell me she wouldn’t need therapy. Quite the contrary, I was hoping she’d qualify! Anyway, I’m not sure that came across in my last post, so I just wanted to clarify.

Some additional background- you don’t need a referral for Early Intervention. You CAN have one (for instance, when Daniel was born the social services coordinator in the NICU called for us, to refer him) but you can also just call yourself and request an evaluation. When I called, I was asked why I wanted the evaluation, and then we talked about other areas of development. For instance- does she have any trouble with feeding? How are her social skills? Do I feel like her gross motor or fine motor skills are delayed? Is her hearing okay? Stuff like that. Then that information is given to a family services coordinator who called me to set up the evaluation. (The process is a little different state to state, but this is how it works here.) The evaluation includes me and Lydia (obviously), the family services coordinator, and a speech therapist. (If you were calling for a motor skills evaluation it would include a physical or occupation therapist. For a baby with Down syndrome it would include all three.)

On to the actual evaluation! The first thing we did was go over a family history and a health history. So: who lives here with Lydia, does she go to daycare, is there a family history of delays, has she been a healthy baby/history of ear infections/any hospitalizations. Just background stuff to help them get a feel for her life. Oh, we also went through what a typical day for her looks like, as well as what she typically eats at meals. Then they get into more of the developmental stuff, the kind of questions you get asked at baby well visits. Does she respond to simple commands? Does she use repeated syllables like ma-ma or ba-ba? Can she undress herself? Does she point out pictures in books? Can she stack objects? You get the idea. This all gives them a better idea if she has additional delays. We also talked a lot about receptive language skills- does she understand what we’re saying to her? Because, as the therapist pointed out, she can’t use words if she doesn’t know what they mean. During all this time, Lydia was just running around and playing, which is what they like. Seeing her in action is helpful to them in the evaluation.

The whole thing lasted about an hour (typical) and in the end they said yes, she does qualify for services. At age 2 they like to see at least 50 words. 2 words is a far cry from that. (I asked, and Kansas only requires a 25% delay to qualify. Or 20% in more than one area. And, like in Colorado, a diagnosis like Down syndrome will automatically qualify you.) The therapist agreed with my assessment that her receptive language is likely right on target, and the lack of speaking is probably because she doesn’t WANT to, and not because she can’t. I am guessing that our home environment plays a part in that. For one thing, many (if not all) her needs are anticipated and met before she has to ask for anything. She’s a fourth child. I don’t wait for her to get hungry and ask to eat, I feed everyone at the same time. Stuff like that. The other thing, and this is BIG, is that Brian and I are VERY ACCUSTOMED to handling a non-verbal child. Turns out when you have an almost 4 year old who is just learning to talk, an almost 2 year old who doesn’t say anything doesn’t seem like a big deal. In fact, the therapist asked if there were any words in particular I’d like her to say, anything that might make our life easier and I said something like, “Well, her not talking isn’t actually a PROBLEM for us. Daily life is fine. I just know if I go to her 2 year well visit and she’s still only saying 2 words the pediatrician is going to tell me to call you!” So we laughed about that and in the end decided words like “eat” and “drink” might be good to learn.

So! All the Early Intervention people meet once a week, (or maybe it’s every other week) and at that meeting Lydia will be discussed and assigned to a speech therapist who has space in the schedule. And then the therapy will actually begin! Any questions?

Evaluate

So, remember back when I said that Lydia wasn’t saying any words at her 18 month well check and I told the pediatrician I wasn’t worried about it? Right. Well, I wasn’t. But I’ve been watching her carefully since then, waiting for a language explosion and…nothing. She’ll be 2 years old in just over a month and she currently says “no” and “bye.” That’s it. I know that’s behind. Like, a LOT behind. I remember at Kalena’s 2 year appointment they wanted her to be saying 50 words, and I was worried that she wasn’t, but by the time I counted it was something like 60. (And then a couple weeks later she started saying a ton more.) Point being, I thought she wasn’t saying much, but it was way more than TWO WORDS.

All this to say I called Early Intervention a couple weeks ago. Lydia’s evaluation is tomorrow. I don’t actually know what she needs to qualify for services. In Colorado a 40% delay qualifies you, but I’m not sure if it varies state to state. Also not sure how they measure a 40% speech delay. Anyway! I’m sure it will be helpful, no matter what. I’ll let you know how it goes.

P.S. Both the main coordinator and the family services coordinator remembered me and asked about Daniel. Because who can forget that kid?

Random Daniel thoughts

One thing I meant to mention in the surgery post- Daniel has no stranger danger. Everyone is a friend to him. He thinks people are the Best! Ever! Which REALLY makes surgery a lot easier, because he’s totally happy to let a nurse carry him away from me. He was smiling and laughing and waved goodbye as they walked down the hall. If they had to take him away from me screaming and crying? UGH. So. Glad it wasn’t like that!

Moving on to other subjects! Developmentally Daniel is somewhere between 18 months and 2 years old. Ish. But temperamentally? He can be VERY THREE. And if you’ve ever had a 3 year old you know how much fun (not fun) that can be. For instance, at lunch today he asked for noodles. Brian heated up noodles and Daniel pointed at them, excited. Signed “eat” and “noodles.” And then he screamed at Brian for trying to feed him said noodles. THAT’S AGE THREE. He also had a tantrum a while back because he wanted his hot dog in a bun, but also cut up in baked beans. Y’all. This kind of crap is exhausting enough when it’s a normal three year old, but Daniel STILL DOESN’T TALK. I mean, he’s getting lots better! But he’s nowhere near 3 year old communication. C90A1551

It’s a good thing he’s cute.

Surgery

So! A follow up on Daniel’s surgery. I mentioned a while back that Daniel was going to have surgery to have his tonsils and adenoids removed and tubes put in his ears again. Well, that happened! His surgery was on the 15th of December, in the morning, followed by an overnight stay for monitoring. Normally their cut-off is age 3, kids 3 and older don’t generally stay overnight following this particular procedure, but because Daniel has Down syndrome they wanted to keep an eye on him for the night. Anyway, the surgery went well. Tonsils were very large, adenoids were blocking 60% of the space back there, which is obviously less than ideal. But now they’re gone! Only one ear had fluid, but tubes should help keep them dry which is important for hearing. And, of course, hearing is especially important as he’s learning to talk.

Post surgery he seemed okay. Obviously he was in pain, and he hated having to take his meds, but he ate and drank just fine. No hospital night is particularly restful, but nothing out of the ordinary went on, and when the ENT team came by in the morning they said they were fine with discharging him. We were home by 9:30 that morning. Barely 24 hours in the hospital all told.

I had my tonsils out at 22. Brian had his out at 29. We are both well aware of how rough the recovery can be. And even though kids are supposed to bounce back much quicker, we were expecting it to be rough! But it did not go like I expected.

Some side explanation. There are 3 basic versions of Daniel: 1) Happy Daniel. This is what most people see, and his most common state. Everything is good and exciting and he’s a happy guy. 2) Sick Daniel. Sick Daniel is very snuggly and pathetic. He sleeps A LOT, cries some, doesn’t want to eat, and mostly just wants to sit on your lap. 3) Mad Daniel. This Daniel is PISSED. Whatever the reason, he’s mad and he’s going to let you know. Mostly by yelling. He screams, he cries, he hits you, and he is generally NOT FUN to be around. (Bonus, since he can’t talk, we often have NO IDEA what he’s mad about!)

Anyway, post surgery I was expecting Sick Daniel. I expected that he wouldn’t want to eat (I know I didn’t), that he would want to be held a lot, that he would sleep a lot, and that we would have to be very careful to stay on top of his pain meds. (They don’t do narcotics for kids under 5, by the way. Just over the counter stuff.) What I got? Was Mad Daniel. Oh my gosh you guys. SO MUCH YELLING. Every medicine dose (so, every 3 hours alternating acetaminophen and ibuprofen) was a fight and there was much screaming afterward. But a late med does? Extra screaming. Whenever Brian left he screamed. He screamed when I tried to feed him, but he also screamed because he was hungry. My nerves were shot. Days 3 and 7 were the worst (as we were told they would be.) And then, right at 2 weeks, he turned a corner! Suddenly he was fine even if meds were late. He didn’t scream at me during meals because swallowing hurt. WOOHOO!

Of course, now we have to undo all the bad habits- all day TV, giving him whatever he wants to eat (pudding/ice cream/noodles (mac & cheese was about the only real food he wanted)) and just generally letting him get away with everything because he was recovering. Oh, like the fact that suddenly he doesn’t want to wear his glasses? I don’t even know what that’s about, but I blame recovery. I’m hoping getting back to school will help with all this.

Anyway, I’m glad we did it. Even in the first days home I noticed a difference in how loud he is when he sleeps (much quieter.) And although we all caught colds right around Christmas, this one has not developed into the nasty cough he usually gets. So, yay for successful surgery!

2015 survey

I know I’ve done this in past years, but I’m too lazy to look them up & link them.
1. What did you do in 2015 that you’d never done before?

Had a kid need overnight stay in the hospital (outside of immediately post birth.) Daniel had surgery and they kept him overnight to monitor him. I feel lucky that this is the first time we’ve had to do this in almost 8 years of parenting.

2. Did you keep your new year’s resolutions, and will you make more for next year?

I didn’t make resolutions last year beyond: survive the year. Which I did! Yay! I do plan on making more this year. Lydia is finally doing more sleeping, and I feel like we’re in a better routine. A routine that’s more than just- do whatever it takes to make it through the day. (Don’t get me wrong, there are still days like that, but I feel like we’re finally moving past survival mode.)

3. Did anyone close to you give birth?

My college roommate, a few friends from church, some online friends, and my SIL.

4. Did anyone close to you die?

No, thankfully.

5. What countries did you visit?

I didn’t leave the country this year. As per the usual. I did visit some other states: Colorado, California (and I drove there with my mom and sisters so we also saw Utah and Nevada.) and I went to Illinois for the first time! Also Missouri which hardly counts because we basically live there.

6. What would you like to have in 2016 that you lacked in 2015?

Better time management. Some sort of workout routine. A lipstick that doesn’t make me feel like I’m in stage makeup.

7. What moments from 2015 will remain etched upon your memory, and why?

Daniel naming all the letters for me.

8. What was your biggest achievement of the year?

Nothing comes to mind. Which is pretty depressing.

9. What was your biggest failure?

Not having enough patience with the kids

10. Did you suffer illness or injury?

Nothing serious.

11. What was the best thing you bought?

New iPhone! First time I’ve had a new iPhone of my own instead of a hand-me-down.

12. Whose behavior merited celebration?

Brian’s, as always. And the big kids. We have some really great kids.

13. Whose behavior made you appalled and depressed?

Many people in the news.

14. Where did most of your money go?

Mortgage. Bills. Super fun things like that.

15. What did you get really, really, really excited about?

Christmas this year. We didn’t move!!

16. What song will always remind you of 2015?

Who knows. Probably some Justin Beiber crap that I don’t even know is by Justin Beiber.

17. Compared to this time last year, are you:
a) happier or sadder?
b) thinner or fatter?
c) richer or poorer?

a) Happier
b) Same. SADLY. I started weight watchers & lost about 15 lbs and then gained most of it back and blahhhhh.
c) Basically the same.

18. What do you wish you’d done more of?

Read. Exercise. Write.

19. What do you wish you’d done less of?

Time wasting. Pretty sure I say this every year, which I think means I should REALLY do something about it.

20. How did you spend Christmas?

Home! No traveling, no company until after Christmas. It was really great.

21. Did you fall in love in 2015?

I feel super cheesy saying this, but I fall in love with Brian all over again every year.

22. What was your favorite TV program?

Arrow. Archer. The Great British Baking Show.

23. Do you hate anyone now that you didn’t hate this time last year?

Nope.

24. What was the best book you read?

All The Light We Cannot See. I actually listened to the audio book, but I really loved this one.

25. What was your greatest musical discovery?

I’m not a “musical discovery” kind of person.

26. What did you want and get?

Some more downtime during the day. I skew to the very far introverted side of the spectrum and I go a little nuts when I don’t get any downtime. Having 3 kids go to school in the morning has helped A LOT with this.

27. What did you want and not get?

Lydia to start sleeping through the night EVERY NIGHT and also to start talking. (I’m actually planning to call and get her evaluated by early intervention next week.) Also, to magically fit back in my pre-Lydia pants.

28. What was your favorite film of this year?

Jurassic World! But I haven’t seen Star Wars yet. So.

29. What did you do on your birthday, and how old were you?

On my actual birthday? I think we got takeout sushi? But I considered going to the Hoopla my birthday celebration. I turned 33. First year since I was 24 that I haven’t either A) been pregnant or B) had a baby under age 1.

30. What one thing would have made your year immeasurably more satisfying?

I would find it super satisfying if Brian and I could get our acts together and stick to our budget. GAH.

31. How would you describe your personal fashion concept in 2015?

Loungewear. Don’t worry though, for 2016 I bought new, nicer loungewear.

32. What kept you sane?

Brian. Internet friends. My sisters.

33. Which celebrity/public figure did you fancy the most?

None.

34. What political issue stirred you the most?

I don’t talk politics on the blog. Or anywhere, basically.

35. Who did you miss?

My sisters. My parents. My long distance friends.

36. Who was the best new person you met?

Oooohh, tough one! I met some lovely new ladies at the Hoopla, (plus one who SHOULD have been there & then couldn’t be.)

37. Tell us a valuable life lesson you learned in 2015.

That weight watchers doesn’t work if you don’t actually count points. (Alright, I knew this before, but learned it FROM EXPERIENCE this year.)

38. Quote a song lyric that sums up your year.

Old song, but from Just Another Day In Paradise (Phil Vasser) “Well there’s no place that I’d rather be.”

 

Not at all suspicious

Some back story: we have a desktop computer that hasn’t been set up since we moved to Kansas. It’s Brian’s and in the past he’s used it for gaming, or in college for programming on, but each of us has a MacBook that we use as our primary computer. However! Recently Kalena has started needing a computer for homework sometimes (plus she likes to play the math & reading games on her school’s website) and Brian thought it’d be good to set up this desktop as a family computer. So yesterday he did (it took some doing- he needed to run some cables and clean it all out with canned air and get Windows put back on it because he’s always just run Linux (and if his current muttering over there is any indication he’s regretting the Windows choice.)) It’s set up in our room, where all the pieces have been sitting for months, but now it works! 

Fast forward to nap time today. Will naps in our room, because he and Daniel won’t go to sleep if they’re in the same room (for some reason this problem is limited to nap time. Bedtime is fine.) A few minutes after I sent Will to nap I had to run in to get something. While I was there we had this conversation: 

Will: Look that way!

Me: *turns expectantly wondering what he wants me to see* …what am I looking at?

Will: Aren’t you going to leave?

Me: *eyes narrow* Why, what are you doing?

Will: I’m just laying here.

Me: Yes, but what do you not want me to see?

Will: *quiet voice* I…accidentally turned on that computer. 

YOU GUYS! He moved the mouse, which he probably does EVERY DAY, but this time it actually DID SOMETHING and he was so worried he was going to get in trouble. 

I laughed because a: that’s funny and b: could he have been ANY more obvious that he’d done something he didn’t want to know?

Better work on the deception skills, William. 😉

With a whimper

I feel a little pathetic about how this year’s NaBloPoMo went. Not because I missed a day (EVEN THOUGH I DID) but because writing still feels like an after thought. I like telling my story here, but this month didn’t really feel like that. Maybe blogging from my phone most days meant trading convenience for depth. It’s definitely more of a “jot down a quick something” way to do it. But! Better a quick something than nothing at all. Right? 

I hope so.

Almost

Well. Apparently even a whole month of blogging every day isn’t enough to get me back in the habit, because I almost forgot AGAIN. Possibly that’s because I sort of feel like once Thanksgiving is over, November is over. I really should have a better handle on that though, since Will has been asking EVERY DAY when he & Kalena get to start their advent calendars. Anyway. I have nothing of substance to say today, so how about a picture? 

 

Cold

How boring am I that I’m posting about the weather, right? BUT I AM. Listen, I like the seasons. When we lived in Texas I really missed winter. But if it’s going to get super cold? IT SHOULD SNOW. Snow is like the beautiful reward we get for putting up with the cold. So this freezing rain we’ve had for the last couple days? Is crap.  

 I went to put some stuff in the recycling bin today but HA! Frozen shut. Getting my car doors open for church in the morning should be fun.