Down syndrome awareness

October is Down syndrome awareness month. I’m pretty sure people are aware of Down syndrome. But! I’ll play along. The idea is to spread awareness of what life with Down syndrome is like. Or, in our case, what life with a child with Down syndrome is like. Back in 2012 I blogged every day in October for Down syndrome awareness. Daniel was only 7 months old in October of 2012, so obviously life has changed a lot since then. What is life like with a 3 1/2 year old with Down syndrome? Well, it’s crazy. As it is with any 3 year old. And I am loathe to generalize, because HEY! Every kid is different! Which means every kid with Down syndrome is different! But, here’s a little about what life with DANIEL is like:

Daniel still doesn’t really talk. He is very communicative- you definitely know when he’s happy/excited/upset/frustrated. He regularly uses about 30 signs, and he is pairing more “words” with the signs every day. But he is far from understandable to anyone who doesn’t spend a LOT of time with him. However, he loves letters and can name them all.

He is DESTRUCTIVE. He throws stuff, almost compulsively. He tears up books/paper/anything he can. He has broken more dishes than the rest of the kids combined. It is frustrating, to say the least.

He has reached a stripping phase. We ordered some escape-proof pjs like we used to use for Kalena, and we keep him in them most of the time, because otherwise? DIAPER OFF.

We still can’t let him feed himself because putting food on his high chair tray means he will either 1) shove it ALL in his mouth, or 2) throw it ALL on the floor. Mealtimes are also frustrating.

He goes to preschool 4 mornings a week, which he thinks is basically the best thing ever. Okay, maybe riding the bus to and from school is the best thing ever. He loves it all.

If you follow me on Instagram you already know, DANIEL GOT GLASSES! We’ve known he’s farsighted since he was about 2, but it’s only recently gotten bad enough to make glasses worth the effort.

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So. What do you want to know about Down syndrome?

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Daniel and doctors

I have no idea when I last updated about Daniel’s health stuff, but I’m gonna go ahead and assume it was a long time ago. So! Last summer (ish? Sometime?) Daniel’s endocrinologist asked if I’d be okay doing a trial off his thyroid medication. His numbers had been good, and she wanted to see how he’d do without it. I said sure and we stopped giving it to him. We had a follow up 6 weeks later and his numbers were still good! I was pretty surprised actually. He’d seemed very tired, and not particularly himself. But we continued with the trial and checked in a couple months later and hey! Still good! Also, he had adjusted by that point, so no more thyroid meds! We will still be seeing his endocrinologist, however, since he is not growing much. At all. I’m not particularly worried. People with Down syndrome tend to be small and his appetite is fine. He eats plenty. Anyway, check up on his growth in…some months? I actually got a message yesterday from Children’s saying they were calling to schedule an appointment Daniel had been referred for and I thought, “Hmmmm. I wonder if that’s the one with his endocrinologist, or with the ophthalmologist. Or maybe the ENT wants to see him again? Oh! Or maybe we’re supposed to go back to the Get Up and Grow Clinic.” So yeah. I should probably call back. Also I should probably write stuff down.

We also saw the ophthalmologist again. I only called because they recommend kids with Down syndrome get vision checks every year and hey! He turned three! So it had probably been a year. Anyway, he is still far sighted aaaaaand it’s getting worse. The doctor said she was willing to go either way at this point: either go ahead and write him a prescription for some glasses, or wait six months and see him again. However, she told us to watch his squinting and eye crossing (of which we had been noticing some) and to call and schedule sooner if it got worse. And, well, it’s gotten worse. Or maybe it’s not worse and I’m just noticing it more. Either way, I need to call, because he needs glasses. (Kari will be so thrilled. She’s wanted him to have glasses basically since he was born.) I’m super not looking forward to trying to get him to leave them on. He doesn’t want ANYONE to leave glasses on, and attempts to remove them at every opportunity. So that should be fun.

Also he’s still cute.

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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.

 

Back to the questions

I promised a couple people in the comments on my questions post that I’d write more about it. And I meant to do that right away, but busy and then sick. So! Getting back to it now.

I didn’t mean to come across in that post as feeling offended by those questions, because I don’t! I just meant that the answers to those particular questions aren’t really informative about what life is actually like with a child with Down syndrome. I think most people ask questions to try to understand more what my life is like, and those questions don’t really answer that. I’m not going to give you a list of questions not to ask, because I’m pretty happy to answer ANY question. AND I’m extra glad when someone feels comfortable enough to ask ME something that might be offensive to someone else, because then I can try to help them avoid that.

Anyway, in regard to the first question, “did you know ahead of time?” I’m not especially fond of that wording because of the subtext that can exist, the unspoken, “would you still have had the baby?” If you want to ask someone this, I recommend asking, “When (or how) did you find out?” which leaves more room for a story to be told. If you ask me when I found out I can explain that the ultrasounds all looked good but that I worried. That I wondered when he opened his eyes. That I knew what the nurse would tell us when she started asking questions. There’s so much more to be said than, “No. No I didn’t know ahead of time.”

Some words on, well, words. Something I read a lot about when I first had Daniel is using “people first” language when talking about people with Down syndrome. For instance, say “a kid with Down syndrome,” instead of “a Downs kid.” I am fairly unbothered by this distinction, although I understand why it’s encouraged. I think people often say something like “the Downs kid” in the same way they’d say “the red head kid” or “the short kid.” It’s a descriptor, and yes, Down syndrome is an easy way to differentiate one kid from many. The problem, I think, comes with the connotations. I think in general you say “Down syndrome” and people jump to the negative. Anyway, the point of “people first” language is that anyone with Down syndrome is a person first. It’s a good message.

April asked if you can think of Down syndrome as being on a scale, and the answer is: not really. Unlike the Autism spectrum, which includes a whole range of conditions, Down syndrome either IS or IS NOT. Either the third copy of chromosome 21 is there or it isn’t. (Yes, I’m ignoring Mosaic Down syndrome here for ease of explanation. It accounts for 2-4% of Down syndrome cases, you can read more about it here, if you’re interested.) Now, YES, there is a range of abilities for people with Down syndrome. Think of it as equivalent to the range of abilities that exists in the typical population. Some people are smarter or more talented. Some people struggle with things that others find easy. Having Down syndrome doesn’t make everyone the same, it just shifts that range over a little. I hope I’m explaining this well. Another thing is, genetics is still playing a big part here too! Which is why Daniel looks so much like Will, even though he has Down syndrome. So genetics will also play a part in the rest of his life too- what he’s good at, what he struggles with, where his talents are- just like it will for our other kids.

And, getting back to the original point of this post (maybe? I think?) Brian and I really encourage all questions about Down syndrome. I’m especially fond of answering scientific questions about what exactly Down syndrome is, or how it happens. (And MAN I’ve had people think some crazy things.) As long as people aren’t being rude I’m good.

So. Any other questions?

Some questions I get asked.

Since having Daniel, I’ve noticed that there are two questions I get asked often.

First: Did you know he had Down syndrome before he was born? And no, we didn’t, but really? This question is irrelevant.  It wouldn’t have changed the outcome, nor would I have been more prepared for what having him would be like. You know how you don’t REALLY know what it’s like to have a baby until you have a baby for the first time? That’s what it’s like to have a child with Down syndrome. You can read all the books and listen to other people’s stories all you want, but until YOUR child is here, you aren’t gonna know what it’s like.

Sometimes I think people are asking if I “knew” he had it, asking more about my intuition than whether or not we did testing. And yes, I worried about Down syndrome specifically. And those worries were completely unfounded- I had no reason to think he would have Ds. And yes, I knew immediately when the NICU nurse started asking questions that she would tell us they suspected Down syndrome. Does that mean I knew ahead of time? Not really. Does it matter? Again, not really.

The second question is: Will he always live with you? And the answer is: Maybe? But who knows if ANY of their kids will always live with them? I mean, I got asked this multiple times while we were living AT MY PARENT’S HOUSE. Granted, we weren’t living there forever, but STILL. You just don’t know what the future holds for any of your kids.

Interestingly, I am almost NEVER asked outright if he has Down syndrome. I’ve been asked maybe twice? People will start conversations about him and make comments like “they’re such angels” or “they’re all so sweet” (which, let’s not generalize, mmmkay?) so I know they THINK he has Down syndrome, but nobody wants to ask about it. I suppose they don’t want to offend me by asking, but Down syndrome has a pretty specific set of physical characteristics. It’s not hard to see if you know what you’re looking for. And I think MOST people recognize it! Anyway, just an observation.

 

Daniel and the thyroid stuff

So, Daniel’s been on thyroid meds for…a long time. I’d look it up in my archives, but I’m too lazy. Anyway, we’ve been seeing an endocrinologist here, and she wasn’t convinced that he actually needed the meds and wanted to give him a trial off. I agreed that we could try it. Why have him on daily medication unless he really needs it, right? Anyway, that trial started back in late September. She wanted me to give him a month and then have his blood drawn to see what his numbers looked like off medication. I took him in (finally) about a week ago and they called a couple days later with the results: numbers are normal. I was surprised. A lot surprised. Not just because he’s been on it for so long, but because of how he’s been since he’s been off.

Since we took him off medication he’s been MUCH sleepier. He starts asking to nap sometimes as early as 9 am. On medication it was no trouble to keep him up until the usual 1 pm nap time. He also naps for longer. He’s always been a good napper, but off his medication a 4 or even 5 hour nap is not unusual. That seems like a LOT of sleep. Because he still goes to bed just fine at 7 pm and gets up between 6 and 7 as usual. And obviously he’s sleepier when he’s sick, and I assume adjusting to being off the medication takes some time, but we’re 6 weeks in at this point. So. We have a follow up in January at the endocrinologist (we didn’t actually see her when we did the most recent blood draw.) I’ll definitely be discussing all this, because HMMMM. I don’t know what to do with this.

In the meantime, sad Daniel has an ear infection.

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And is skeptical of big sister in his lap.

Daniel update

Every 6 months I have a meeting about Daniel’s IFSP, how he’s done on his goals, what new goals we want to set, and how often we think he needs to see each of his therapists. That meeting was last week and, long story short, Daniel is doing GREAT. He’d met almost all the goals we’d set at the previous meeting (we’re still working on the food throwing issue, but that’s more of a behavioral thing than a motor skills thing) and at the moment there is nothing that stands out as Thing He Should Be Doing But Isn’t. Obviously he’s still delayed, but progress is being made on all fronts at a good rate. Here’s the latest on his progress:

He is now a full time walker! Aspen Grove was a big final push here because he wore shoes all week (something he doesn’t do much when we’re just at home.) Plus it gave him lots of opportunity for walking longer distances and walking on uneven terrain (again, something he doesn’t get when we’re in our house.) So WOO!

He signs about 25 words these days. I’m going to try to come up with them all here for my own record, so just skip down if you aren’t interested in which words. He signs: milk, more, eat, book, bath, car, out, water, done, baby, daddy, play, toy, Elmo (he signs an E), cheese, banana, nap/bed, please, poop, thirsty, up, prayer, and diaper. (I’ll probably come up with more as soon as I publish this, but that’s the majority of them.)

He mimics signs pretty well and tries to say the word with a few of them. (He’s pretty good at the “b” sound, so book and bath always get a “word” with them.) He’ll also say “YAY!” and “hi da” to Brian. He has no name for me and pretty much refuses to sign “mama.” Brian is definitely the favorite. He can point pretty well these days and will often accompany a point with “dat!” when he wants something.

He is getting better at fine motor stuff too: putting the shapes in the right place in a shape sorter, using a pen/pencil/crayon to scribble, pointing with one finger out and the others in a fist, stacking a few blocks on top of each other.

He loves to play “where’s Daniel?” and if you sing him ANYTHING (even made up nonsense) he will wait for you to finish and then applaud and yell “Yaaay!” So, if you’re in need of a self esteem boost, come on over.

He had a sleep study done a couple months ago. Did I write about that? I don’t think I did. Anyway, we went to see an ENT to check on his ear tubes (out, no need for new ones right now) and see about his tonsils (which are big) and then ENT recommended a sleep study before considering a tonsillectomy. Also, apparently the American Academy of Pediatrics recommends that all kids with Down syndrome have a sleep study done before the age of 4. (Sleep breathing issues are common with Ds.) So: sleep study.

Side note, here’s a little amusing story from the ENT visit. We had a conversation at the end of the visit that went something like this:

ENT: How’s his speech?

Me: oh, he doesn’t say any words, but he’s getting speech therapy through Early Intervention.

ENT: So…does he have any other diagnosis?

Me: Ummm, no he’s a pretty healthy guy. We saw a geneticist after he was born and things look fine.

ENT: Oh, so you’ve seen a geneticist?

Me: (Thinking, “Obviously. Don’t they always have you see a geneticist if your kid has Down syndrome?”) Yeah, at Children’s in Denver right after he was born.

ENT: Well he’s got a low palate, so that could be partially obstructing his airway when he sleeps

Me: Right, probably because of the low muscle tone.

ENT (as we’re about to leave): So…he doesn’t have Down syndrome, or anything, does he?

Me: Well, YEAH he has Down syndrome.

Then I laughed because he’d been trying to figure out if Daniel had Down syndrome and I’d been answering all these questions assuming he KNEW Daniel had Down syndrome and was asking about things IN ADDITION TO. Read the file dude. Anyway. *I* was amused.

But back to the sleep study. Brian stayed with him overnight at the clinic where Daniel got to sleep all wired up and looking like tiny Santa. See?

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Results came back fine. His sleep is good quality and since he didn’t have any episodes of apnea there’s no reason to take his tonsils out right now.

He had his 2 year well visit (back in March, slacker blogger here) and he weighed in at 23 lbs 9 oz (10%) and was 33 3/4 inches tall (45%.) He and Will are close enough to the same height that they can wear a lot of the same clothes. Since this visit we’ve also seen a pediatric ophthalmologist and got the same recommendation as his last visit (which was in GJ): he’s slightly farsighted, but it’s mild and he’s still young enough that trying to keep him in glasses would be more of an effort than it’s worth. So! Recheck at age 3.

He loves baby Lydia, but is not very good with “gentle” yet. He wants very much to be allowed to touch her, but his version of that is usually hitting her in the face. Sometimes with a toy. He is also a big fan of taking her pacifier out, sometimes to suck on, sometimes to try to shove it back into her mouth. The other day he walked over to her in the bouncer, smacked her in the face with a toy and then when I picked her up he laughed maniacally and climbed into the bouncer himself. So he’s adjusting to the big brother roll pretty well 🙂

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He continues to be a mostly happy little dude. He’s not always happy, of course, but he is just So! Exuberant! when he is happy. His emotions are all pretty unfiltered though, so when he’s mad we KNOW. It’s fortunate for us his temperament is generally good. And of course, he’s always making new friends.

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Easter

Back to the catching up! I haven’t posted about Easter yet, so here you go! (I KNOW you’ve been sitting around waiting to see Easter pictures of my kids.)

First of all, some pictures from the Kansas City Down Syndrome Guild Easter event. They served donuts from Krispy Kreme and bagels from Panera (so basically my favorite breakfast EVER.) And I heard from one of the volunteers that Krispy Kreme delivered twice as many donuts as ordered for no extra charge. In case you needed ANOTHER reason to love them.

The Easter Bunny was there:

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Kalena was excited to see him, and Daniel was VERY curious about the giant bunny. Will was scared, so he stuck with me.

There was also a balloon animal guy.

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Kalena asked for a bunny, because hey! Easter!

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Will asked for a crocodile. OBVIOUSLY.

This Easter thing was the first big Down syndrome thing we’ve been to here. Most of the stuff we go to is just our county, not all of KC. And those events are usually for certain age groups, so we go to the ones for families with kids with Ds who are under five, or whatever. Anyway, it was lots of fun.

Back to Easter stuff at home. Of course we did some egg dying.

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We let them each dye 6 eggs. Makes me appreciate my mom for letting my sisters and I each dye a dozen (at our request.) Because MAN three dozen hardboiled eggs would be a lot to eat.

The Easter Bunny brought and hid baskets with candy and a book in each. (No basket for Lydia. And I ate most of Daniel’s candy.) Then after church Brian hid the eggs the kids had dyed. Now, last but not least, dressed up for church pictures!

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Look! Everyone made it into the pictures! Even though you can barely see Will because he insisted on holding Daniel and they’re basically the same size. Ah, kids.

The schedule

Since I’m at the point where this baby actually could come ANY TIME I figure I might as well continue to be in denial and make a bunch of plans. Seems logical, yes? (Okay, it’s mostly doctors appointments, but whatever.) Here’s a run-down of my next few days. (I know you’re super excited to hear it.)

Book club last night. Technically not upcoming. But! People were skeptical at January’s meeting that I would make it to February’s but I DID. So I’m including it anyway. We read The Art of Hearing Heartbeats. I liked it.

This afternoon I have my pre-registration appointment at the hospital. I looked up the pre-registration stuff online and discovered that HA! I was supposed to call between 30 and 32 weeks to set up an appointment. Obviously that couldn’t have happened since I didn’t even live in this state yet. In fact, by the time I had an OB, knew where I’d be delivering, and knew that I needed to pre-register I was 36 weeks along.  Anyway, I called and discovered they’re booked! Until March 10th! Which wasn’t going to help much. So the lady making the appointments put me on the top of the “call if there’s a cancellation” list and lucky me! She called yesterday with a cancellation for this afternoon.

Tonight we’re going to a seminar put on by the Down Syndrome Guild of Greater Kansas City. It’s on feeding, speech, sensory needs, and oral placement activities for kids who are non-verbal or pre-verbal. We’re right there with Daniel, working on sounds and signs but not saying any words yet. I’m very interested to hear what they have to say! Hopefully lots of stuff we can use.

Tomorrow morning we’re planning to tour the maternity ward at the hospital. I could theoretically do this today at my appointment, but Brian wants to know where we need to be going too. Especially since I may not be much help by the time we go in. They have open tours on Saturday mornings, so that’s the plan.

Monday morning Daniel has physical therapy. Scheduled for early in the week so hopefully it will happen 🙂 He loves his therapist.

Tuesday afternoon I have a “prenatal visit” with our new pediatrician. (We have a pediatrician!) I think it’s mostly just meeting him? Anyway, that’s on the agenda.

And Wednesday afternoon I have my 39 week appointment scheduled with my OB. At which point I’ll actually be like 39 1/2 weeks along.

So there you have it. For someone who is perfectly happy to not leave the house for weeks at a time (ME) that is a LOT going on.

Some thoughts on spacing

Kalena and Will are 19 months apart. I like that spacing.

Will and Daniel are 27 months apart. I also like that spacing.

Daniel and this baby will be almost 24 months apart. Seems like, since that’s between the other 2, it would also be good spacing. HOWEVER. Daniel isn’t developmentally at the level of a 2 year old yet. Daniel doesn’t walk yet. Or say any words (he does do a few signs!) He drinks out of a straw cup, but still takes a bottle from me 3 times a day. He doesn’t use utensils to eat (so we have to feed him stuff like yogurt and applesauce) and still does a lot of food throwing at mealtimes. All this is to point out that Daniel is MUCH more like a 1 year old than a 2 year old. And that? That spacing seems CLOSE.

I will have a nursing baby and a toddler who still needs bottles. I will have two children who need carried anytime we’re outside the house. At 19 months Kalena was old enough to fetch me diapers when I needed to change Will. At almost 2 Daniel still doesn’t understand what I mean when I say, “No biting!” let alone follow any kind of direction.

Anyway, wish me luck. I get the feeling this transition is gonna be rough.