Why Person-First Language Matters

More alike than different!

More alike than different!


Person-first language is just what it sounds like..you put the person first. Whether it is stated or understood, just remember that the person you are speaking of needs to be regarded as an individual, not a developmental, congenital, or mental health diagnosis or socioeconomic status. Since this blog is of course, largely about raising a child with Down Syndrome, that is where I will go for this example. Please remember, though, that person-first language is something that ALL people deserve. Don’t talk about people like they are objects or all the same. For those than whine about “Why do we always have to be PC (politically correct), this is for YOU:

Scenario: (and yes this has really happened. To us. This week in fact. ) A lady checking my son into a medical facility for a routine exam asks, among other questions “Is he a Down?” It took me off-guard as at this facility everyone has either waited for me to bring it up (which I don’t really find necessary, especially if you are an MD or nurse-you probably have the experience to pick up on features of Down Syndrome. It doesn’t bother me personally.) or others have just asked “Does he have Down Syndrome?” But that isn’t what this lady asked. While I was trying to figure out if that is in fact what she said, I didn’t know what to say because no one has regarded us in this way. She was very nice and oohed and ahhed over how cute Ethan was, so I don’t believe she said it to be rude or label him. IF she said something just overtly offensive I would have corrected her on the spot and gotten upset too probably, but it was a nice lady just nOT using person-first language. The moment passed and before I knew it we were moving onto the waiting room and I just felt…funny.

See, I had already learned in school to get my undergraduate in Early Childhood Education that you must use “person-first language”. I saw that it made sense but above all, I tend to just agree to call people whatever they want to be called that makes them feel respected because I am an empathetic person; I mean, I even became a therapist before my current stay-at-home-mom gig. So some may think “Well, Natalie, in therapist world, everyone is careful with their words and its all Kum-Ba-Ya and positive affirmations.” That is only kind of true, but besides that point is that now that I am a parent of a kid who “has a label”, I see the importance of person-first language SO much more. So why did it upset me today, or make me “feel funny” to be asked “Is he a Down?” I had to ask myself those questions this afternoon because I only thought about the “r-word” being used, not so much this, and definitely not by a medical professional.

“IS HE A DOWN?” MY KID IS NOT A BLANKET FILLED WITH GOOSE FEATHERS, IF THATS WHAT YOU MEAN..

1) IT DOESN’T LEAVE ROOM FOR THE PERSON TO BE ANYTHING ELSE, FROM YOUR WORDS’ CONNOTATION: It bothers me because when say “is he” or “he is”..it leaves no room for anything else..meaning he is labeled as just that. He IS Down Syndrome. He’s a “Down’s Kid.” He’s “Downs.” So does that mean he is that and nothing else? You can only be a “Down” or a “Normal?” What sort of images are conjured up when you hear this? For me, it made me think of a ton of kids on one side of a line with a huge sign in the middle of them “Down.” And on the other side of the line “Normal.” It is just so final. Such labeling of people. Some of you are rolling your eyes at me possibly, so lets look at person first language and see how that compares…”Does he have Down Syndrome?” …I don’t know about you, but now I just see my kid again…and Down Syndrome on a long checklist of things that may or may not pertain to him. He is a PERSON again!

2)TRY IT WITH SOME OTHER EXAMPLES TAKING OUT THE PERSON-FIRST LANGUAGE AND SEE HOW IT SOUNDS: “Is she a schizophrenic?” or even “Is she schizo?” (because that is about how much effort the lady took on asking about my son…nice lady, but just saying…) Okay and what about “He an autistic?” There may be other examples you are coming up with in your head right now and you think they don’t really sound offensive to you, or maybe even anyone you know. But you know what? That doesn’t really matter. If it is not considered respectful to people who have the diagnosis or have kids in their family with a diagnosis, then you should go with whatever they consider respectful. Yes EVEN if it changes every few years.

3) I’M NOT GOING TO JUMP DOWN YOUR THROAT IF YOU HAVE GOOD INTENTIONS. AND EVEN IF YOU DON’T HAVE GOOD INTENTIONS, YOU MAY BE SPARED THE MAMMA TONGUE-LASHING. MAYBE. Some of you may be shuddering that you have already said some of these things to me or someone else such as “the Down’s kid” and think we need to give some grace. We DO, I promise. I can usually tell the difference between being unaware and being lazy. I understand that not everyone had “person-first language” drilled into their heads in college. That’s why I share it now, especially so people who interface with families everyday in the medical field or otherwise will know how it is perceived, or can be. I will also say I don’t think too much of it when other people say things like that, but I expected more knowledge about person-first language at medical facilities. Some have pointed out to me that it may not be fair or at least not realistic to expect medical professionals to actually know how to refer to people with Down Syndrome or other disabilities and have outdated information because it has been awhile since they have been in school. Things do change; that is why “handicapped” is no longer used unless in reference to a handicap sticker (although that may come along with the dying out of that word. Interesting trivia-I learned from a textbook that “handicapped” actually was derived from having “hand in cap”, meaning those who had disabilities had to beg for money holding out their hats for donations. So you can see how that was not a very welcome term once people with disabilities were given a little more rights and respect. There are things than people don’t ever consider UNLESS they have a disability, have a child with a disability, or some other personal connection.

Back to the medical professionals, though: I sympathize with being in the dark on the up-to-date terms, which is why I write this blog post and encourage teachers, therapists, doctors, nurses, etc. to share it with their co-workers. Whoever has a hand in choosing professional development courses, consider including a topic like this so people feel more valued and listen to the rest of what you have to say. Honestly, some people may even question if you have up-to-date medical information if you do not have up-to-date information on addressing your patients, clients, etc. as people. I do not say that vindictively, just thoughtfully. I know you work hard and care for your patients and clients. This is just another way to continue that trend, from the perspective of a parent.

4) ALL PEOPLE IN THE DOWN SYNDROME OR OTHER DISABILITY COMMUNITIES ARE NOT THE SAME, SO GO WITH THE MOST CONSERVATIVE PERSON’S TERM TO AVOID MAKING PEOPLE FEEL LABELED. You may say, “Well cousin so-and-so and my co-worker have kids with Down Syndrome, and it doesn’t bother them. I guess that means its okay to say “Downs Kid” anyway. Or, “well, my friend throws around the word ‘retard’ when joking just as a casual term, so I think its okay that I say it around anyone. Why should I change how I talk?” On the principle of person-first language, you go with whoever has the most conservative or what you might call “most sensitive” point of view. It is just a few words. Many times we get upset over lack of person-first langauge because want our kids to hear language that exemplifies what they CAN do, not that they are the same as all other kids with the same disability. Then they hear what textbooks or people say someone with Down Syndrome is “supposed to” be like and could think of themselves as the label. You can apply this to all kinds of labels.

So, there you go. Your justification for why you should use person-first-language and be “PC.” 😉

PS- We say “typical kids” or “typical peers” rather than “normal” when regarding children who do not have Down Syndrome. Ex:(what we would not say: “Does he have any classes with normal kids?” BETTER way to say it would be “Does he have any classes with typical children?” Just some bonus anti-labeling etiquette for you. 😉 Thanks for reading!

Bed Training….moving from crib to mattress only

We have been working on transitioning our 2-year-old (was 2 in July) to sleeping on the infant/toddler mattress (same one that was in the crib) on the floor. Although not completely unheard of, it is not the usual route. Here are the reasons why we chose this and why we are doing it at this time.

This is the crib/changing table combo he had until recently. This was in our house before we moved, thus the green walls and Ethan letters. We now have those stuffed animals from the mobile decorating his ceiling fan, which we have done for awhile. He was starting to pull the mobile  parts down!

This is the crib/changing table combo he had until recently. This was in our house before we moved, thus the green walls and Ethan letters. We now have those stuffed animals from the mobile decorating his ceiling fan, which we have done for awhile. He was starting to pull the mobile parts down!

WHY MATTRESS ONLY?

1) Ethan was starting to climb ALL furniture, including his crib, mostly from the outside during the daytime, but he was able to scale it almost entirely from the outside, so naturally he could do it easily from the inside as well! Also, ours has a changing table connected providing a nice place from which to practice his Evel Knievel stunts!

2) We looked into using the transition toddler bed parts that came with his crib/changing table combo, but decided against it because it was still too high off the ground for our comfort (Also, I think the changing table would still be attached, thus the Evel Knievel platform would still be in place!). We still do not know if Ethan has spine/neck instability as some kids with Down Syndrome have, and we didn’t want to have something go wrong in our experimenting with transitioning to a bed. I don’t know that a fall from the toddler bed or any bed would really cause a problem; but since the only perk in our eyes to a toddler beds is they are possibly more aesthetically pleasing, we figured we would go with fall prevention. Also, he’s a shorty!

3)I like the idea of him being able to get in and out easily to go use the potty. Hopefully he will be able to do that before he outgrows his mattress.)

PREPPING/FIRST NIGHTS
First, Ryan disassembled the crib during the day and we went ahead and put half a pool noodle (a cross-section since it was a pretty fat one) and stuffed it under the fitted sheet/mattress pad cover as I had seen suggested by Mommy blogs via Pinterest. (and a friend said it worked pretty well for them keeping their little boy still.) Also, Ryan did extra baby-proofing and vacuumed making sure little objects were off the ground since Ethan would have free reign of the place. We also removed his dresser as it was tall and unstable if drawers pulled on by tiny toddler hands. You can buy furniture straps, but we figured we could just add it to our furniture collection in our bedroom in our apartment. When you go from living in a house to an apartment, you get creative with your space! I’m glad Ryan took the crib apart early enough in the day that Ethan could play on his mattress and get used to the new look of his room without the crib. I think if we waited until bedtime to stick him in this now bigger-looking room and lie him on a mattress with no bars surrounding him, he would have taken MUCH longer to fall asleep.
The first night, it took about an hour for Ethan to fall asleep. I pretty much had to lie my head and shoulders on top of him so he would stay still.

I talked to others about their bed-training experiences and decided to try the mattress on the floor, patting him on his back at night then eventually letting him get himself to sleep as he has already been doing in his crib most nights. I thought about taking the pacifier away from the first night but when I saw how hard it was to get Ethan to just STAY on the bed at all the first night even WITH a pacifier in…I thought “okay, he can have it until
he gets used to this.”

DSC_0862

DSC_0863

NIGHT 1-The first night, it took about an hour for Ethan to fall asleep. I pretty much had to lie my head and shoulders on top of him so he would stay still. We had discussed taking turns sleeping in his room on an air mattress or floor since this was new to all of us and we weren’t sure how wildly Ethan would sleep etc. Turns out he DOES move quite a bit (even though the snoring is gone after the tonsillectomy-yay!) We had to put him back on the mattress several times.

FIRST WEEK EXPERIMENTATION-We later realized after people discussed how their kids were positioned on their beds/mattresses that we needed to put Ethan’s head in the corner (mattress was already there, so we just flipped him and added a piece of the pool noodle to foot of bed.) We also scooted his toy chest closer to his mattress so that would provide another barrier. We thought about adding a corner protector to the toychest corner (and I DID put a cloth diaper that is pretty well padded since its double inserts!) buuuut what can I say, it fell off at some point and it seemed to be fine so we didn’t bother with the corner protector for the time being. It was pretty high up there and he had a bit of space between he and the toychest anyhow. He’s a wild sleeper so anything can happen though I suppose. That’s why I thought of the corner protector!

The second night, we didn’t even put Ethan to bed-his grandparents (my parents) did. We randomly decided to go on a date night (which we don’t get to do much, so hey, don’t judge us for going right at the start of this bed training haha) It went great, though! My dad said he told Ethan “okay, time for bed!” and Ethan just walked to his bed and laid down, then was asleep 30 minutes later! Stinker, gave Mom the hard part the first night! haha I do think the novelty of the bed helps. He plays on it during the day. Maybe that helped, maybe it didn’t. He was also pretty tired that day and yes, during nap time he did have to lie down on the bed. It didn’t take as long as the first night. Each night the time to fall asleep was less and he didn’t fight it as much each night. Singing and patting his back or chest helped him and even at one week I still allowed him to have his pacifier because the training was progressing and I didn’t want to mess it up!

DAY 7-Without being told to go to bed, when the bedtime prayers and story were finished, Ethan toddled himself to his bed and laid down! Unfortunately, we had forgotten to brush his teeth but it still wasn’t too hard at this point to get him to settle in. During the week I had tried having him rub his own hair to fall asleep and I wanted to start being able to back out of the room or sit further away, but he still seemed to need close surveillance to stay in bed, if you will.

I got to thinking that the reason we are transitioning him is to keep him in a safer bed and it may not be all that necessary or realistic to expect that within a few days he would be able to have the maturity to remain on his bed, while awake, while falling asleep. I remember when I was in kindergarten I wouldn’t even stay still for nap time because I had appointed myself the class social butterfly I suppose. I visited anyone whose eyes were open. I don’t want Ethan to have my insomniac nature though, so I’m trying to not force anything and make falling asleep relaxing while not having him be too dependent. He is able to fall asleep on his own without crying, no doubt…he has done this almost every night for several months and did it often when he was younger too. When I started working fulltime, I think he was just too excited to see me to fall asleep with rocking every night so from about 10 months of age he has had LOTS of practice with falling asleep on his own. So the real trick here is maturity and routine to stay in the bed…

A perk of a mattress only is the extra playspace it provided! We do usually try to dress up the bed with stuffed animals and blankets. You could always add some wall stickers near the mattress…I think a little picket fence or 100 Acre Wood sign would be cute to go with his Winnie the Pooh theme. Some people do low hanging wall hangings for kid rooms but I wouldn’t consider that “babyproofed.” And I would get sick of putting art back up on the wall. That is why his Winnie wall hanging is up high! We had some items on shelves and so forth, but with moving some of the furniture out, I will have to hang some of his hangings on the walls. Also, to be quite honest when we were hanging things in the apartment we forgot about his room and haven’t gotten around to putting them up, so they were in easels on the tops of furniture.

DSC_0861

THINGS TO CONSIDER BEFORE TRANSITIONING

1)IS THIS TRULY BRAND-NEW TO MY CHILD? Ethan has never been to a daycare/center where he is expected to lie still on a cot, so it may actually be easier for kids who already do this at a center to transition. e.g., maybe you won’t have to lie your head and shoulders on top of your child the first night of bed training haha

2) DON’T MESS WITH A GOOD THING. As others had forewarned, don’t mess with a good thing: if your child isn’t trying to climb out of his/her crib, leave them be. Some say wait until the child has actually already crawled out, but that makes me too uncomfortable. I’ve already seen my son climb furniture then just fall over backward and hit his head on the coffee table. He has the climbing skills but not the planning and long-enough legs to get DOWN safely from furniture sometimes. Also, if I know he has the ability to climb out any day, we thought we would just bite the bullet and transition rather than wait until Ethan knocks furniture over or learns to climb the gate that leads to the stairs! He does great going up, but NOT down unassisted!

3) FIND AN IN-BETWEEN IF NEEDED.If you have a busy workweek, you are about to go on vacation, or your child is sick there MAY be a safe in-between: We realized the need to transition Ethan to a mattress just before his tonsillectomy, but we didn’t want to start something new just to have him be in the middle of a surgery recovery. We noticed Ethan was NOT able to climb out of his Pack N Play due to the netting not providing good footholds, so he slept in his Pack N Play during his recovery until we caught up on sleep and were ready to transition him to his mattress. If your kid is a bedding connoisseur, this may not work for you, but our son alternated sleeping in the Pack N Play and his crib when he was a few weeks old. Just the way it turned out sometimes; we didn’t have a bassinet. Also he sleeps in the Pack N Play when we are out of town.

4) If your kid has already had some experience with falling asleep on his/her own, bed training might not take quite as long. (But I’m not a stickler for that…I believe in rocking the older babies some if they will let you. 🙂 At least when they are still in the crib.)

Ethan’s Newborn Shadow Box..Consider Keeping NICU mementos!

If your baby starts out in nicu, you may not think you want anything to remind you of that time. my suggestion is keep mementos anyways then decide later! I'm proud of all Ethan has come through, so I chose to put his ear buds from the medical helicopter flight to commemorate this.

If your baby starts out in nicu, you may not think you want anything to remind you of that time. my suggestion is keep mementos anyways then decide later! I’m proud of all Ethan has come through, so I chose to put his ear buds from the medical helicopter flight to commemorate this.

Did Ethan’s newborn shadow box today! I may or may not add a picture of him in his homecoming outfit..or a tiny one from NICU. Feel like its pretyy full already, we will see!

I bought the shadow box from Hobby Lobby regular price, around $40. It has burlap backing and has a magnetic door that just opens if you need to add something. Also, I used floral (or “corsage” pins from Michael’s) to pin the items to the burlap.

2 yrs, 1 month milestones

Ethan has been making some progress despite him having a tonsillecomy, adenoidectomy, etc recently.
Here is what he has been up to…
He got to meet his new baby cousin and was very intrigued! And yes he did sign “baby” haha. He will sign baby for older kids too, it is rather funny.

Speaking of signs, here are the new ones I can think of from this month:
home
outside
owl
pig
wait

words spoken: sang “Leah” during Signing Time theme song!

Ethan started doing a little pretend play with his pretend fruit and other kitchen set items, such as pretending to eat fake grapes and eating with a play spoon.

physical/PT: He can climb furniture well now! We sadly said goodbye to his PT he has had for over a year and will be meeting a new one next week! He is also using walking to get around more than any other form of traversing, so we are very thrilled about that!

STEPS TOWARD MORE INDEPENDENCE:

Ethan almost scaled the front of his crib from the OUTSIDE so we knew that we had to keep him in his Pack N Play (which is harder to climb because of the netting) while he recovered from his tonsillectomy until we can get him ready to transition to a mattress on the floor! We will be working on that starting this weekend.

We are starting to take him to the potty more frequently: for several months, he will pee in the potty anytime you put him on, whether a tiny sprinkle or a ton. He has only pooped in it a few times, and he still does not cue us. Hopefully with taking him at least once an hour and watching Signing Time’s Potty Time DVD (which a little bird told me he is getting for Christmas 😉 will help.

We are still practicing with the cup with recessed lid and Ethan self-feeding with a spoon..he is doing pretty well! (Mostly with the spoon)

I think that about covers it! On to bed training next!