Lydia, still with the not talking or sleeping

I was going to write about Daniel first, but there is sooooo much to say & I’m on my phone. I’m going to need a real keyboard for his shenanigans. So today you get to hear about Lydia. She’s been doing speech about once a week since January, and she IS making progress, but it’s slow. Slow because she is stubborn as a mule. She CAN talk, she just WON’T. Still. 

She can imitate words (when she feels like it) and all the sounds are there. She can say whole sentences “where did it go?” “Oh! What is that?” But again, only when she feels like it. And almost all her speech is imitating, not spontaneous. Anyway. The point is she is still FAR behind what is developmentally appropriate and she will be 3 in 4 months (ūüė≥ HOW) so that means it’s time to transition to preschool! She’ll be in the same program as Daniel and I’m very excited, because I love them. (Before the speech stuff started, I wanted to apply to see if she could be a peer model.) So YAY! Likely she’ll start sometime in January. I really think being around kids her age who talk will do the trick. 

Sleep. Yeah, she still doesn’t like it. It’s okay sometimes. It’s crap a lot. She’s awake right now, even though she is exhausted from being awake from 11 to 2 am. But you know, at least it was happy times! 

BIG SIGH. 
P.S. In the time I was typing this, Daniel escaped his bedroom like a dozen times. Childproof door locks get here tomorrow!! 

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Talking and other pesky things

I’m just going to complain a little bit today.

Lydia? Still not talking. We started speech therapy weekly, but she still isn’t talking. She plays during therapy and sometimes imitates sounds, but she’s still only saying maybe half a dozen words. And I KNOW it’s not instantaneous. I KNOW therapy takes time and work but UGH. I just want her to start talking already. Also, she has developed a habit of ending therapy sessions with a GIANT tantrum (usually because we won’t let her type on the tablet her therapist uses to write up notes.) She is FAR more tantrum-prone than any of our other kids. The therapist has been reassuring about how I respond. (Ignore. Don’t give in. Remove her from the situation if it gets bad.) Still not fun. She tends to be very quiet during therapy, opting to play by herself rather than engage in whatever we’re trying to get her to engage in. Basically the opposite of her usual MUST BE ATTACHED TO MOM AT ALL TIMES. That’s been frustrating too. We’re still trying to figure out the best way to get her to engage.

And Daniel. Oh, Daniel. He’s started refusing to nap, opting instead to scream from his crib for as long as he’s in there. This leads to cranky overtired Daniel, and by dinner time he’s a mess. I know I can’t MAKE him nap, but good gracious. He still definitely needs the sleep. Also? The eating of non-foods is getting out of hand. Eating crayons at school has been ongoing, and I assume a sensory thing. But the weather has been nice which means playing outside and he has started eating dirt by the handful. Taste is not a deterrent. He literally picks up dirt clumps and EATS THEM. I guess this is a sensory thing too? But GAH. How do I get him to stop?! I discussed with Lydia’s speech therapist today possible substitutes to give the same oral sensory input as crayons or dirt. (DIRT!) If it doesn’t stop I think I’ll have to call the Down syndrome clinic for a consult with the child psychologist. In the meantime it’s super obnoxious. Also messy.

In summary: good thing these kids are cute.

 

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?

Daniel’s IEP

So! Daniel started preschool! Did I mention this? At age 3, kids “graduate” early intervention and if they are still in need of services, they start getting them through the school district. Which means, PRESCHOOL! Daniel actually started a couple weeks before his birthday, to give the teachers time to observe him so we could set reasonable goals for his IEP.

Unrelated to the IEP meeting, Daniel LOOOOOVES school. Loves it. So much that I can’t get him dressed on non-school days, because getting dressed means GO TO SCHOOL! Or, at the very least, go somewhere in the car. He goes Monday through Thursday from 8 ish to noon ish. I think school hours are actually more like 8:45 to 11:15, but his bus picks him up about 8:15 and drops him off about 11:45. The bus! He rides the bus! He LOOOOVES the bus. His bus is just for the preschool kids, so it has carseats and comes right to our house. It’s pretty great. Anyway! Back on topic.

His IEP meeting happened just before his birthday, and although “First IEP Meeting” seems intimidating, it really was not much different from his IFSP meetings, which have been happening since he was 8 weeks old. (For those who don’t know, IEP stands for individualized education plan and IFSP stands for individualized family services plan.) Anyway, I met with his preschool teacher, our coordinator, and the therapists he’ll see at school. (Physical, occupational, and speech.) His main goals for PT are to work on jumping, running, and lifting his feet higher when he walks so he can step over things, and step up onto a stair, etc. He’s doing pretty well with his OT stuff, the big thing we want to work on is eating with utensils, but that’s much more about behavior than fine motor skills. His speech teacher wants him to be able to name more objects (we talked specifically about using more signs.) The goal is (I think) 8 signs during a 15 minute period. She said he can definitely do that during snack time, but doesn’t do many signs during the rest of class. She asked if any of his previous speech therapists had talked to me about using more naming signs instead of just “more” or “please” when he wants something. I told her we haven’t actually had any speech therapists who did signing and that all the ones he knows are signs I’ve taught him. She was pretty pleased with that, and said she’d send a list of other signs that would be good for him to learn.

And there you have it! I could be more detailed if I bothered to go find my notes from the meeting, but meh. It’s late. I was going to add a picture, but wordpress has other ideas. SORRY.

 

Daniel’s evaluation

Daniel had another early intervention evaluation yesterday. They happen every six months to reevaluate goals and see how therapy is going. He’s met some of his goals: pulling to stand and cruising along furniture. Imitating sounds. Playing social games. Others weren’t met exactly, but we discarded them anyway. For instance: says “hi” and “bye.” He still doesn’t say them, but he does wave, so he’s *communicating* hi & bye. Those particular words aren’t any more important than other words in terms of speech. (We really didn’t word that goal well to start with.) Anyway, here are his goals for the next 6 months. (Test my memory here to see if I can remember them all.)

1: Walking independently. This is one that we had set at the last evaluation knowing it was a stretch. Hopefully we’ll actually make it this time! (This particular goal is a big reason we brought in the physical therapist and got him fitted for orthotics.)

2: Imitate words and sounds. This was one of his goals last time too, but he’s still not saying any words, so even though he’ll imitate some sounds we’re leaving it on there.

3: Eat with a utensil. So far handing Daniel a spoon results in said spoon being thrown immediately on the floor.

4: Transition from a bottle to a sippy cup. Daniel is capable of drinking out of a sippy cup, but mostly he won’t.

5: Point to something he wants. I’ll really have to work at modeling this one. I’m not much of a pointer.

I feel like there was one more, but if so I’ve forgotten already. Good thing my short term memory is so great. Woohoo for goals!

New shoes

Did I mention that one of the things the physical therapist recommended for Daniel was orthotic inserts for his shoes? Well she did. See, in addition to low muscle tone, people with Down syndrome have loose tendons and ligaments. For Daniel that’s manifesting in a tendency to roll his ankles in toward each other when he stands. (It’s a common problem.) Sometimes that will correct on its own, but more often it just gets worse with time. Having Daniel wear shoes with orthotics should give his ankles the support they need to keep them from rolling.

The therapist brought the inserts over this week so we figured we just go pick up some shoes and get Daniel used to them. BUT. The PT recommended we use the inserts in lace up tennis shoes. Lace up shoes are more supportive since you can get them on tighter than with velcro or whatever else. And APPARENTLY nobody wants to lace toddlers into tennis shoes. (And really, I get that. I generally don’t put my kids in shoes at all until they’re walking.) We went to 6 stores before we found a single pair of lace up tennis shoes in his size. Fortunately we did finally find some. Obviously we bought them (you know, since they’re the only pair IN EXISTENCE.) Then we had some fun times trying to get them on Daniel. Took us an embarrassingly long time to figure out that we needed to take out the insoles to get the shoes to fit. (The orthotic inserts on top of the insoles didn’t leave enough room for any feet in there.)

SO. Shoes purchased, orthotics added, shoes on Daniel. But will the kid leave them alone? Absolutely not. Every time I turned around he’d pulled one of them off. The therapist recommended he wear them basically all the time he’s awake, so should be fun times for me ¬†putting his shoes back on every 30 seconds. Hopefully he gets used to them soon and starts leaving them alone!

15 month visit

Daniel had his 15 month check on Thursday morning. Wait. Let’s back up.

So my parents went to Tahiti. (Are you as jealous as I am? Thought so.) Anyway, we’d discussed how long they’d be gone and everything was all written on the calendar blah, blah, blah. 9th through the 19th. That was the trip. So I scheduled Daniel’s visit for the 20th. That way I wouldn’t have to take all 3 kids. Do you all see where this is going? Yeah, they left Tahiti on the 19th. At 11:30 pm. That’s 3:30 am on the 20th here. Definitely not back until the night of the 20th.

Anyway, hauled all 3 kids to Daniel’s well check and found out Daniel is: 31 inches long (39%) weighs 22 lbs 6 oz (43%) and his head is 18.25 inches around (35%.) He’s dropped a little on the growth charts, but not enough to cause any worries. I filled out his 12 month questionnaire- did I get into that when I wrote up his 12 month visit? We decided that filling out the prior questionnaire would be the best way to assess his progress, since his development is decidedly not at his age. Anyway, with the 12 month questions he got a passing score for communication, fine motor, and problem solving. However, he still failed gross motor. 6 questions, he got five “not yet” one “sometimes” and zero “yes” answers. SO, the pediatrician recommended that he get PT once a week.

For those of you I’ve just confused, Daniel is currently getting therapy twice a week, once with a speech therapist, once with an occupational therapist. The OT does also work on gross motor, but it’s not the main area of focus. (And obviously it’s working- passing scores in fine motor and problem solving.) I discussed this recommendation with his OT today and she agreed that it’s a good idea. Consult with the PT will happen in a couple weeks and I’ll update you on that then.

He also had his blood drawn (today actually) to check his thyroid levels. The TSH came back right in the middle of the normal range, so we’ll keep him at his current dose and check again in a few months.

Besides the doctor stuff, he cut another tooth! (His other top front tooth.) And he continues to be adorable. See?

IMG_1668

 

Pulling to stand in his crib is new as of today!

15 months old

Daniel is 15 months old today! 15 months. It does not seem possible that it’s been that long, and at the same time I can’t remember what life was like without him. (Isn’t that always the case?) Anyway, here’s the Daniel update.

He waves hi! (And bye sometimes.) He gets very excited, and I love it.

He is constantly on the move. He HATES being confined. I spend most of my time saving him from throwing himself down the stairs or crawling out the door.

He still eats everything we put in front of him.

He has a tooth! Finally. It’s his top left front tooth. The right one is almost in. Both teeth are REALLY far forward, so it’s like there cutting through the front of the gums rather than the bottom. (I have a picture, but it’s pretty ugly.)

He will sometimes do a four point crawl. (Meaning hands and knees rather than commando.) He still moves faster in commando so that’s what he uses most of the time, but if he doesn’t like the surface his crawling on (grass, most notably) he’ll move to hands and knees.

He is pulling up! He’s been working on this for quite a while, (lots of practice for physical therapy) and now he can manage it by himself. No cruising yet. We’re working on it.

He’s getting more talkative. His speech therapist said he makes all the main sounds they look for at this age. We’re working on mimicking. Still no words.

He has, unfortunately, reached my least favorite phase: whining. You guys. IT IS CONSTANT. When I pick him up he tries to throw himself out of my arms and when I put him down he cries about it. Plus he laughs at me when I tell him no. I have never been a fan of this phase. 15 months to 2 years is my least favorite age so far. Anyway. He’s there.

IMG_1550

My constant view.