ENT

Daniel has an ongoing thing with ear tubes. Mostly the problem is everything looks fine when they first come out but then a couple months later he fails a hearing screen and turns out his ears are full of fluid. He hasn’t had trouble with ear infections particularly. No more than our other kids, but he does have regular issues with fluid in his ears. Anyway, the result has been that he’s had 3 sets of tubes, with several months between one set falling out and getting another. And I really wish we didn’t have to wait until his hearing is in trouble again before they put new tubes in. His ear canals are tiny. He KEEPS having problems with fluid in his ears. Can we not just go ahead and put tubes in?

Currently we’re in a weird place- one tube is out, but the other had granulation tissue growing around it, so it’s still there. (This can be problematic) But tomorrow is his follow up appointment to check on the tube that’s still in and see if his other ear stayed clear or not. I’m HOPING it will be obvious if he needs new tubes. Waiting and having follow up after follow up where the ENT says “Well…let’s see how he does” only to have him fail school hearing tests a couple months later is not actually all that fun. I just want him to be able to hear! Because if he can’t hear, how can I get him to work on listening? 😂

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Daniel at school

So, one of my very good friends is a para in Daniel’s classroom and y’all. It’s the best. Not only does she take adorable pictures of him working at school and text them to me, I get to hear all the GOOD stories.  

Like the time he took his PE icon off his schedule, walked over to the door, waved and said bye to the classroom, and then took off down the hall. (Going to PE. Obviously. He loves PE.) 

I also got to hear about the new para who, upon seeing Daniel shove most of a nutrigrain bar in his mouth and make a giant mess of the rest, said, “Well maybe his mom should teach him how to take one bite at a time.” You guys. I could not stop laughing. The idea that A) it’s that easy and B) WE’D NEVER TRIED TO TEACH HIM is just so ludicrous I’m not even offended. (He has never worked with developmentally delayed kids, nor does he have kids of his own. My friend was quick to tell him to NEVER EVER make a comment like that again EVER, but we laughed about it together. A lot.)

Anyway. It’s fantastic. And look how cute he is! 

Self

Daniel self-identified for the first time tonight. We were asking him everyone’s name at dinner (a normal family activity around here) and he was naming everyone as usual. But TODAY, when we got around to him and asked “who is this?” he said Daniel! 

He’s 5, so this probably doesn’t seem like a big deal, but for us it is. He’s been able to identify teachers and peers by name for over a year, but he had no name for himself. Self-identification is a goal on his IEP. We have *actively* worked for this moment. So. Big day around here. 

Obviously I also made him do it again (a whole bunch of times) so I could get it on video and OF COURSE that video is going on Instagram and Facebook so you can all see it. 

IEP & a kindergarten plan

Believe it or not, Daniel will be 5 next month. FIVE. I’m in denial. But my denial won’t stop it from happening, so when I had Daniel’s IEP meeting last Friday, it was also a kindergarten transition meeting. Even though he won’t be changing schools, (his preschool is at our home school) he will be changing therapy teams, because the preschool therapists only work with preschool kids. So! This meeting included everyone on his current team (PT, OT, SLP, & preschool teacher) and everyone who will be on his team next year (new PT, OT, & SLP, a kindergarten teacher, behavioral psychologist, and teachers from both the resource room and the intensive resource room. Plus some admin people. It was a full room.)

First we went over current goals (all going well, making progress) and discussed what he’ll be working on through the rest of this preschool year and during the Extended School Year (summer school.) He’s progressed enough in most areas that they’ll move from evaluating him against the 0-3 year scale to evaluating him against the 3-6 year scale. (That gives a pretty good idea where he’s at developmentally- he’s basically on par with a 3 year old for gross motor and fine motor, quite a bit further behind on social & communication skills.)

Next we went over the plan for kindergarten. The recommendation the team gave was to have Daniel placed in a traditional kindergarten classroom and also spend time in the Intensive Resource Room. The IRR is (you may have guessed) more intensive than the regular resource room. The benefits for Daniel are that the IRR provides daily therapy practice, in addition to being pulled out of class for speech/OT/PT, and provides him his own workspace for subjects where he is far enough behind his peers that it doesn’t make sense for him to be in the traditional classroom for those subjects. The IRR has its own teacher and is tiny, in terms of student numbers. (Currently only 2 kids are assigned to it, they are also both boys with Down syndrome, which made me smile.) They also provide music therapy, which I’m sure Daniel will LOVE. Daniel will also have a para (a helper) assigned to him who will be with him all day. (The IRR will also help train the para in how to incorporate Daniel’s therapy practice into his regular classroom stuff.) Kindergarten in our district is 1/2 day, unless you want to pay for full day. However, because Daniel needs so many therapies and extra help AND we want him to spend time with his typical peers, the team recommended on his IEP that he be placed in a full day class (with fees waived, since this is considered part of his services.) They gave a sample schedule to show how his day would go, and reassured me that he’d be spending more than half his day in the traditional classroom. It all sounds pretty great, and I feel sure Daniel will thrive.

Kindergarten! 3 kids in school ALL DAY LONG! Pretty crazy.

And FOUR! 

Daniel. Our sweet baby Daniel is FOUR! Not sure how this happened since he’s supposed to stay my baby FOREVER. Anyway, he had HIS well visit today. (And Will has one on Wednesday. Apparently I enjoy the pediatrician SO MUCH that I scheduled 3 visits in 2 weeks.) He is healthy and although he’s on the small side for typical kids (he only weighs 1 pound more than Lydia!) on the Down syndrome charts he’s at the 90th percent for height and about 40th for weight. He’s followed by so many specialists that well visits are mostly for vaccinations (none today though!) but it’s still good to check in and hear that all looks good!  

 

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.

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!

ENT

Daniel had his ENT appointment today (follow up on his failed hearing screen at school.) I figured the ENT would confirm fluid in the ears and tell me Daniel needs tubes again. And that DID happen. But then he went on to say that taking out his adenoids would help with chronic fluid in his ears. Aaaaaand then he said that if he were already being put under for the adenoid surgery they might as well take his tonsils out too. (Especially since his sleep study results were, apparently, borderline. The sleep study people said his sleep was fine, but ENT said he’s on the higher end in terms of episodes of apnea per hour. I don’t know the details here.)

ANYWAY. Daniel is now scheduled to have his tonsils & adenoids removed and tubes put in. They said the surgery is about an hour long, but they’ll keep him at least overnight to monitor everything and he’ll have to meet the “intake by mouth” requirements before they’ll discharge him. SO. This should be…interesting.

Oh, we’re fortunate that Daniel doesn’t have any heart issues, otherwise they require a pre-surgery consult with a cardiologist. We may have to do a consult with anesthesia, but they weren’t sure today.

Eyes and ears

We’ve known for a while now that Daniel is far-sighted. It’s recommended that kids with Down syndrome get their eyes checked out by a pediatric ophthalmologist at least once a year because eye problems are common. The first time Daniel had his eyes checked was 6 months. At that point they were just checking out his blocked tear ducts, and after checking back at 1 year they had cleared enough to leave alone. (His eyes are still prone to goopiness though, any time he has a cold or congestion.) At his 18 month appointment the doctor told us he was slightly far-sighted, but that she didn’t think glasses would be worth the fight at that point. His vision wasn’t bad enough that glasses would make a huge difference, and it wasn’t interfering with his development at all. (Really bad vision at that age could have interfered with depth perception, making learning to walk extra hard.) Then we moved and…I don’t think we got his eyes checked when he turned 2. Anyway, when he turned 3 I DID get his eyes checked and at that appointment the doctor said she would either write a prescription then, or we could come back and check in 6 months. I opted for the “check back in 6 months.” We had noticed some eye crossing and squinting, and she told us definitely call if those got worse. Well, those did get worse over the next couple months, and I called, but the next available appointment ended up being around the 6 month check in point anyway. There was no question we’d be leaving that appointment with a prescription.

Coincidentally, the school did vision screenings about 2 days after Daniel’s ophthalmology appointment. The call from the school nurse went something like this:

Nurse: So, we did vision screenings today…Daniel’s teacher said he recently had an appointment at the eye doctor?

Me: Yep, on Wednesday. His glasses are in the mail!

Nurse, clearly relieved: Oh, good, because I noticed some things

and then she went on to describe stuff we’d seen too. And she told me she’d send home the results, be that we could obviously ignore the recommendation for a full eye exam.

His glasses have not been NEARLY as much of a fight as I expected. I figured he’d be taking them off every 2 seconds and refusing to wear them, but it hasn’t been like that! He can CLEARLY see better with them on, and he recognizes that too. He’s happy for us to put them on in the morning, and although he does get tired of wearing them sometimes and takes them off, that is happening less and less often. Plus, look how cute he looks in them!

(Side note: My sister Kari has been hoping he’ll need glasses literally since the day he was born. Got her wish!)

IMG_0810

Now on to ears. Hearing screenings happened at school a couple weeks ago and Daniel’s results were not good. If you’ve been reading here long you know that this isn’t the first time we’ve had trouble with his ears. (Which, again, unsurprising for a kid with Down syndrome.) He failed all his newborn hearing screens, and then failed a couple hearing tests at the audiologist once he was out of the NICU, had an ABR, blah blah blah, finally had a set of tubes placed at 5 months and passed a hearing test. He had his second set of tubes done at 18 months. At his 2 year appointment Daniel’s pediatrician referred us to an ENT at Children’s because he couldn’t tell whether the tubes were still in place or not. Turns out not, but the ENT couldn’t see any fluid, so he didn’t think Daniel needed another set of tubes right away. But, that’s been more than a year ago and it looks like he probably needs tubes again. So! ENT appointment later this month. I will let you know how that all goes.

Questions answered

I got a couple good questions on my Down syndrome awareness post, and today I’ll be answering them!

Laura asked how we explain Daniel’s Down syndrome to other kids. The cop-out answer is: mostly we haven’t had to. Because Daniel is still so young, many other kids don’t recognize that there’s anything different about him. Our kids have known since he was born that he has Down syndrome, but I’m not sure that even now they really know what that MEANS. Kalena recently asked me, “What is Down syndrome?” which is an easy question to answer- Down syndrome is a third copy of the 21st chromosome. I gave her a quick little biology lesson, hopefully simple enough that she understood. Then we talked about how having Down syndrome affects Daniel. My short answer here is that it makes things harder for him to do. We talked about the fact that Daniel has to work harder to learn things that come easily to other kids. I didn’t get into the medical aspects, because I’m pretty sure a 7 year old doesn’t care that people with Down syndrome are more likely to have hypothyroidism, or diabetes. Also pretty sure she doesn’t know what those are. Her next question was considerably harder to answer. “Is Down syndrome good? Or bad?” I said something super eloquent like, “Well…both.” Then we talked a lot about how Down syndrome makes Daniel who he is. We talked about how great it is to see Daniel learn new things, and be excited, and how enthusiastic he gets about things he likes. We talked about how much he loves people and how happiness is contagious. And we also talked about how frustrating it can be that Daniel bites or throws things when he’s angry. We talked about how it’s hard sometimes because he takes a long time to learn and follow the rules. And we talked about the fact that many people out there do think of Down syndrome as bad. At the end I asked her what SHE thought, and she said, “Well, I think some things are good and some things are bad.” Which pretty much sums up life in general. (She then wrote about having a brother with Down syndrome for a school assignment. Because, she said, she wanted other people to know about Down syndrome.)

Then Jess asked about Daniel’s therapies! And she may be sorry she asked because I LOVE talking about this stuff. (I try not to bore people, but yeah.) So! Yes he has aged out of Early Intervention. EI ends at age 3, (pretty sure that’s true across the US) at which point kids are reevaluated to see if they qualify for continued services. If they do (and in many states Down syndrome means automatic qualification) services start through the school district. The district we’re in has a large preschool program at one main building, and then a couple of elementary schools have programs at the school buildings. I think generally if your home school has a program that’s where they will send you, but I’m not totally sure because I know other kids in our neighborhood who go to the other building. Sooooo… Anyway. Our home school DOES have a program and that’s where Daniel goes. I’m super glad it worked out this way because it means all the kids are at one school, and Daniel will be familiar with the school by kindergarten (is already familiar, actually- would NOT let us walk past his classroom on back to school night. HAD TO GO IN!) and that the staff will get to know Daniel right from the start. Side note- the big kids tell me every time they see Daniel at school. Preschool and kindergarten have the same recess time, so Will often sees him on the playground, and Kalena’s 2nd grade classroom happens to be next door to Daniel’s preschool room, so sometimes she sees him in the hall.

Transitioning Daniel to preschool was great. We met with our EI caseworker person, plus his primary therapist (his PT, who I still miss) and a district liaison person to set up goals/talk about what kind of support we thought he’d need in preschool. Then I met with the liaison and his preschool teacher for a little meet & greet (with Daniel) in the preschool classroom. Daniel thought that was awesome and was sure we didn’t need to leave. Those meetings happened before he started going to school (which actually happened a couple weeks before he turned 3.) Then, shortly after he turned 3 I met with his preschool team: teacher, physical therapist, occupational therapist, and speech therapist, for his first IEP. They have kids start coming a couple weeks before they turn 3, so that at the first IEP they’ve had a chance to observe, which makes picking goals a lot easier. I didn’t know what to expect from his IEP, but it’s essentially the same as his IFSP meetings when he was in early intervention. (IEP= Individualized Education Plan and IFSP= Individualized Family Services Plan.) He currently works with each therapist for 40 min a week (I think. Pretty sure that’s right.) Each therapist is there on a different day. The rest of his preschool time is spent with the other kids in his class, half of whom are other special needs and half of whom are typical kids or “peer models.” I’m a fan of the mixed group. We definitely want Daniel to be mainstreamed as much as possible, so to see it start while he’s still in preschool is wonderful.

Right now we’re not doing other therapies outside of school. We work on his goals at home, of course, but he’s making good progress and at this point I don’t think additional therapy would increase that progress any. We may do some in the future, though. There are a couple places here I’ve heard good things about (particularly for kids with Down syndrome) and if at some point we feel like the therapies he’s getting at school aren’t enough we will definitely look into those.

Oh! Also, he qualifies for bussing to/from school as part of his services and I’m not sure which he likes more- school, or BUS RIDE! He loves the bus. The preschool bus has car seats, so we put him on and get him buckled in and every day before we’re finished buckling him he’s saying, “Bye! Bye!” and waving in our face like, “Get off my bus I’ve got places to go!” So yeah. It’s excellent.