Book review-Supporting Positive Behavior in Children and Teens with Down Syndrome

I recently bought and read a book at a recommendation in a Down Syndrome parenting support group, and I’d like to share about it because I thought it was great! The title is in the blog title here-Supporting Positive Behavior in Children and Teens with Down Syndrome and the subtitle is “The Respond but Don’t React Method” It is written by David Stein, Psy D. First off, for you to decide whether you’re up for getting and reading this book I will let you know this-it is a fairly short and easy read, it includes examples, and it is both specific and general. So, if you think that sounds like something you would be up for, I don’t think you’ll regret it.

This book is written by a psychologist, and having a social work background myself-it was not totally unfamiliar.It was a nice review and summary of all the basics of behavior antecedents and reinforcement and of what I have learned about Down Syndrome over the past 5 years. The main take-aways from this book that I recalled just after I finished reading it were as follows:

1) Emotional reactions are even more exciting to those with Down Syndrome than they are to most kids/teens. The author explains this more in regard to the brain makeup and the language processing differences and how people with Down Syndrome excel in emotions processing. For me, this was just a good reminder of what I already had practiced by coaching parents to do as a mental health therapist and as many parents learn as they go. I also try to remember that language processing issue and to quit being so wordy as I might be unfairly thinking that Ethan (my son with Down Syndrome) is taking in these mini-lectures. ( I try not to, but it’s what we adults do!)

2)Learning rules is NOT the time for building new language. I think since I’ve tried to have the mindset that “I need to have high expectations and let my son with Down Syndrome rise to that rather than sell him short on his abilities.” While that is true, I have found from this book that I have probably been using too advanced or too lengthy language when disciplining and correcting Ethan. It needs to be simple and with a visual, if possible, to set him up for success.

3)Preventive rather than reactive strategies are better to change behavior. This is always the ideal but thankfully he isn’t too “psychologist-y” (in the face of how most probably view them!)and DOES discuss handling discipline after the behaviors occur. Most of it is on changing things, looking for root causes of behaviors, and deciding when you may be labeling something a problem behavior that frankly, isn’t. Our big issue that made me want to buy this book is throwing (and no surprise-it pops up in the book and is discussed quite a bit in Down Syndrome parenting groups online!) My son throws not just to say he’s done with something (that actually decreased quite a bit once his language improved and even with signing before that around age 2), but he also throws for enjoyment…ALL the time. So it seems. Without having done a formal functional behavior assessment (which is discussed in the book), I could tell he does it more often when he is tired or in environments with less structure (at home… yay :/ ) Reading the book gave me some things to put some research and expert advice behind some things I felt was probably the “right” way to handle it (ignore the innocuous lightweight objects being thrown right in front of him-correct and substitute when hard objects are thrown especially at random trajectories around hte room or toward someone (and that is almost ALWAYS unintentional-but it IS very unsafe.) The author is realistic in discussing intervening for safety but makes good points that there really aren’t reasons to react and it even addressed my other concern about WHY Ethan throws so very often. It mentioned repetitive and even OCD-like behaviors being for comfort or to “unwind” and even mentioned teens with Down Syndrome watching the same 3 minute youtube videos on repeat or doing self=talk. (I was intrigued to read about teens toward the end of the book to see what things we might see crop up later.) It was comforting but I think some of Ethan’s throwing is still problematic because it is a safety issue.

In case readers wonder, I’ll go ahead and say it-bolting IS addressed in detail as is “stop and flop.” While there are some specific behaviors addressed, the book does not touch on everything because then as the author pointed out-busy parents probably wouldn’t read it! The principles given are helpful in providing a way that you as the parent can handle whatever behavior comes about to a certain point and sure you might end up needing some professional help temoporarily-for your child or you 😀 Overall I felt like reading it and understanding more about the way my son’s brain works and how the language delays he has might make him react differently to things helps me be more patient with him.

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Behind the Yellow and Blue Banner

I am usually that proud parent who shares twatermark backpackhings about Down Syndrome awareness, medical alert bracelets, and inspirational stories on social media. I never miss wearing blue and yellow on 3-21 (World Down Syndrome Day) and share facts to raise awareness all through October . I even made a wreath last year.

Some days, though, I am wistful about that extra chromosome. I don’t know if it’s so much for me as for him..I think not having Ethan in Sunday School and a developmental center until recently has made me sheltered as well-sheltered from the painful awareness of just how far behind Ethan is becoming in relation to his peers. Ethan is progressing very well; but regardless of his progression, all the other kids are moving onward very quickly and without hours of therapies every single week and almost every day. The sad thing (sometimes) to me is that it;s not just that he is being passed up by kids who are 3 years old. Kids one to two years younger can already talk so much more clearly. For some reason (well I actually know several reasons ) being delayed in speech bothers me so much more than than other things. It is sad that Ethan has worked hard on jumping with both feet off the ground for over a year, not to mention running-yet other kids barely shovel in their 1-year-old birthday cake and they just up and do it. Their bodies can just execute it so much easier than Ethan’s. While sad, that is easier for me accept than speech delays.

Why so sad about speech? I think it’s because when you are left out of communicate-that is the biggest barrier in connecting with others. How often will not being able to run, jump, or ride a bike affect connecting to others? Well, a lot actually in early childhood. Still, speech is the main thing in my mind that connects people to one another. This ever-widening gap between Ethan’s abilities and others makes me so sad and concerned for his connection to others. I hopeEthan isn’t lost in the shuffle-that he isn’t hurried along, spoken for, or forgotten because he quietly sits (or not so quietly-ha) talking in shorter phrases, signing, needing more time and broken-down directions to follow.

Here are some things I never considered-nor did you probably-on how important his interventions are. It’s what he works so hard at and has to leave family time or class time for in order to do what comes naturally to typical kids for the most part.

1)Jump
2) Run
3) Ride a tricycle or bike
4) Walk without falling
5) Walk longer distances without tiring
6) Walk down a step without falling (I have to be very watchful. He has almost face-planted in concrete steps. Yes I know that could happen with a typical child, but it is more likely to happen for a kid like Ethan due to his low muscle tone, etc. If you just dismiss us parents of kids like Ethan by saying “kids fall”, it only makes us feel more alone.

I am not wanting pity or to make people feel weird..I really don’t know what I hope to accomplish. It’s just straight from my heart to my pen (and now computer. I figured I would blog it, but I just needed that good old pen to paper therapy!) I guess maybe we won’t always be expected to be chipper or just act like the differences aren’t there. Please don’t expect that. You may hear about our early acceptance of how Ethan was born. We love him like crazy. We sometimes say we wouldn’t change him-HIM Well what does that mean? Of course we want him. I’ve grown to understand what some veteran parents of kids with Down Syndrome mean when they say they wish their child didn’t have to have an extra chromosome. Half of you Down Syndrome parents are mad now,maybe, or shocked. I’m not going to tell someone how he or she should feel. These are just times that the pain is more present, just grief over other things-it doesn’t go away. When someone mistakes your kid for one much younger because of ability and stature-it’s there. When I’m told it could harm my child irreparably to do tackle football or gymnastics-and we have already cut out those and trampolines as options at the young age of 3, it’s there. When my kid has hardly uttered his name in a recognizable way, yet kids 2 or more years younger who barely know him roll his name from their tongues effortlessly-the frustration and pain are there. It’s shocking. We work so hard-Mainly HE does. Ethan and his therapists and us. And it is such a punch to the gut when I happen upon some kids 3 or younger who are doing not just the things he’s learned in 2 years, but more. Much more. And I know he isn’t the sum of his abilities. I know he is still precious and smart. You don’t have to tell me-the thing about a child with delays is as a parent or other close adults is that we see patterns, varied signs, or unclearly utterances, and we see our child letting us know what he knows about the world.

Review for “Born This Way” reality show-episode 1

I really enjoyed the first episode-the variance of characters with Down Syndrome as well as the parents and starting to hear tidbits of their philosophies on parenting which I’m sure we will see more about as the show progresses. I used to be a bit scared in Ethan’s first year to hear much or think much on him being an adult, but I want and need to think about it. I especially would like to see more about the community center for people with disabilities as I don’t know much about what they are like. I did work for a company that included this service, but I worked at the developmental preschool associated with it.

I don’t know how much all the young adults represent a cross-section of actual individuals with Down Syndrome, but from what I can tell from my little personal experience in having discussions with adults with Down Syndrome, they mostly seem to have adequate if not great speech skills. That is the biggest thing that seems to be hard and an obstacle for us, as Ryan and I were discussing right now. We want to have conversations with our son and seeing the adults carry on complex conversations is reassuring to us that Ethan will get there, too.

Something else I found interesting is that the one who was struggling with being associated with the word “Down Syndrome” (Elena) was the one whose mother admitted struggling to accept the diagnosis for a very, very long time especially because her Asian culture (not certain where exactly she was from-Japan I believe) was less accepting of such diagnoses than the U.S. I think our kids notice more than we think of what causes stress for us. I am in no way bashing that family, just making an observation.

I will be interested to see how the show, parents, etc. handles the young adults’ dating/sexual/marriage lifestyles. There are so many different components to consider with parenting any child and especially one with special needs. The show gave some future clips to indicate this will be discussed in future episodes. I’m so thankful that regardless of how some families handle it and whether it is how we would handle it-it gives food for thought and allows us to think through scenarios before we reach that stage. I’m all about being prepared and while I love reading and researching, there is something about watching a show that helps me learn and think through things (kind of like videos you watch in school-at the risk of making it sound like a boring task. The show is anything but boring so far!)

To end my little review, I’ll throw out my favorite quote from the first episode: “I feel like I’m the Matt Damon of the bunch.” haha Check it out! I watched it free on aetv.com

You Know You’ve Spent a Lot of Time in the Hospital When..

A lot of these could apply to if you or a parent or other loved one is in the hospital, but mine is mostly geared toward things you will notice or become accustomed to if you have a child in the hospital.

1) You start to grab a jacket (even in summer), snacks, and water on the way out the door to the emergency room. Hey, you’ve done it before-you know whether a minute to grab those is going to make a difference. And you know how cold the ER is along with wait time.

2) You don’t need reassurances anymore about procedures like X Rays, feeding tube placements,or respiratory treatments because you’ve seen it all already.

Ethan and his Dad hanging out on one of Ethan's shorter, less dramatic hospitalizations (aspiration pneumonia, one night)

Ethan and his Dad hanging out on one of Ethan’s shorter, less dramatic hospitalizations (aspiration pneumonia, one night)

3)During said procedures, you go ahead and volunteer to hold your child’s limbs in place so the procedure can be done quickly and correctly without extra kicking from your kid interfering.

4) Instead of calling for a nurse for everything, you try to spot oxygen adhesive dots or IV tape and try to do it yourself before you call (if its in an open public area. Not advocating for rifling through the nurses’ personal workspaces lol)

5) You’ve had just about everything they will ever serve in the hospital cafeteria and know what is tolerable and what is just gross.

First time to hold him after heart surgery. He was there 7 days.

First time to hold him after heart surgery. He was there 7 days.

6) You have made it into at least one public service announcement or brochure for the hospital.

7) People on various units see you and say, “Now you look really familiar” or “Your child’s name is so familiar…you’ve been here before, haven’t you?” Or depending on the staff or unit, they don’t even have to think-they just run up to you betweeen patients and say, “Hey! OH, he’s grown so much! What are you guys in for again?” Or “sorry I haven’t said hi, its just been so busy. But I wanted to come over and see you guys!” Its nice to be reunited, yet  its also like “oh my…our lives.”

8) You are able to direct lost parents around te hospital better than some staff because you have been to nearly every unit as well as almost every speciality outpatient clinic in the hospital.

9)You can help other parents compare notes on who is best at finding tiny veins for blood draws and which doctors are reliable (or not).

10) You aren’t phased by holding a baby with cords. It doesn’t scare you or make you nervous, but still are annoyed by it. Its always annoying. That hasn’t changed for me . 😉

9

The Rainbow Baby-Miscarriage and Life Beyond It

While this is a very happy time, its another one of those things that did not happen the way we thought it would. This baby came unexpectedly after lots of tragedy and disappointment in the form of two miscarriages while we were trying to get pregnant with our second child. The first one (several months prior to seeing the current pregnancy’s positive test) was a very early miscarriage-what is typically referred to as a “chemical pregnancy”-and we only knew we were pregnant for about a day until we realized that one was a failed pregnancy. It was such a high and low within one day and we hadn’t even told anyone yet, so it was like a quick slap in the face. We weren’t even sure if it was a true pregnancy or a rare false positive somehow, but later the doctor said that it was most likely a chemical pregnancy.

miscarriage blog post photo

LOST BUT NOT FORGOTTEN

The most recent tragic event, however, was the miscarriage that happened at about 7 weeks along. We knew about it for a few weeks and had told our parents, all our siblings, and maybe one or two friends we happened to be around at the time. We bought Ethan a t-shirt about being a big brother to tell my parents about the news. Close to 7 weeks along, I thought it was just some similar bleeding to when I was pregnant with Ethan, but as time went on I knew it wasn’t normal. It was just an awful feeling, calling my parents to watch our 2 year old (Ryan was at work) so I could just lie down and feel and see it all unfold-one of my first nightmares of parenthood from back before I had kids. I really wasn’t sure for a while WHAT was going on and it was the weekend so I couldn’t run up to the doctor or anything and the doctor on call said there’s really nothing to be done except rest and wait to see what is going on.
She said she really didn’t think I was having a miscarriage, but I think she was trying to make me feel better because it really was still up in the air based on my symptoms. My fear was not misplaced, though.

I couldn’t believe after ALL we had been through with Ethan’s surgeries and illnesses and adjustment to our firstborn having Down Syndrome that we had not only one, but two failed pregnancies in a ROW. We started to wonder if something was amiss since I had yet to have any typical pregnancies (while Ethan made it, I don’t consider it a typical pregnancy because he doesn’t have the typical number of chromosomes.) I did the usual panel of blood tests doctors do if someone has had three miscarriages in a row or suspect something unusual. All tests came back normal, and we had no immediate plans to try again. We wanted to have a vacation (with our extended family as planned) as we have yet to have more than a couple of days out of town (if that) since before Ethan was born. We thought we would wait at LEAST six months to try again. We wanted to have some emotional healing, some time alone, some time away, etc. As you know, that’s not how it happened!

SURPRISE! RAINBOW BABY

Just two months after the second miscarriage, I decide to take a pregnancy test since I was late-negative. I waited a few more days and while I was on a walk I just thought something seemed off and I should test again for obvious reasons (Ryan kinda pushed me to, though. I’m really cheap when it comes to pregnancy tests for some reason.) Then bam-with a faint line, but two lines nonetheless, I holler down the stairs to Ryan, “um…there’s a second line.” Not as much the Hallmark moment as the other times we’ve had positive pregnancy tests but when is a surprise and after such stressful and depressing events, who could blame us? We started getting excited over time and tried not to worry. One of THE most rewarding moments of my life was that first ultrasound at 8 weeks when we were told “strong heartbeat, 159 beats per minute..and measuring just like he/she should!” It was on the same ultrasound machine they used to confirm everything had “passed” after the last miscarriage, so going into that room was scary and depressing at first. What an amazing relief it was! We even got to see AND hear the heartbeat, and it was just one of the sweetest sounds I’ve ever heard. It was one of the biggest reliefs of my life, almost up there with being told Ethan’s heart surgery was successful and we could come back and see him.

If you have never heard the term “rainbow baby”, it is what women who have had miscarriages call a successful pregnancy that follows a pregnancy loss. I looked at a forum about miscarriage support on babycenter.com and saw it mentioned and I thought it a very appropriate term. I know, sadly, not everyone will get a “rainbow baby” and maybe not so soon after a miscarriage like we did. I don’t understand why some seem to have it easy while others struggle to get pregnant and still others get pregnant easily just to lose their pregnancies before they can share it with the world. There are so, so many things I just don’t get but I know that doesn’t change that God is good and He has a plan for our lives. While He doesn’t cause all the horrible pain in the world, He does use what we have gone through to a greater purpose (and sometimes things we can find within our own lives). I hope that is what He can do with our story-about miscarriage, about trusting God in all these extreme highs and lows and unexpected twists and turns in our lives. Our experience in having children has certainly been that way! Regardless of the hard times, we have mostly great times lately. We love our sweet 3 year old and all his uniqueness and hard work he puts in to everything. We also already love our little Rainbow Baby Bean on the way very much.

Pre-School Pretest: What My Son knew and ate before starting school (dev center) and first few days

Age: 2 years, 8 months

1st day at dev center (at age 2)

1st day at dev center (at age 2)


SPOKEN WORDS: (Some of these are “approximations” technically, where some of the word is said, but as long as I know he is saying something that sounds like the word and using it in the context that makes sense, I just count it as a word.) Usually people who are around him on a weekly basis would be able to understand what he is saying; or just someone who has worked with young children.

PHRASES
“did it!”
“Read, please” (or book please)

ball
book
read
banana (doesn’t say “b” part usually)
“nanas” (his own word, meaning snacks usually)
Mommy
Dadda
Nin Nin
Poppa/Papa
Meme for “Memaw”
up
down
hat
bye bye (or just bye)
cheese (no ch sound yet)
potty (says it “pot pot” while signing potty)
“poo poo” (meaning what you think)
bath-spoken as “ba ba”
Kix (as in the corn puff cereal) Says all but the “i” part, surprisingly.
hi
hello– “-Lo”
outside
hot
dog/doggie
toe (For actual toes as well as Cheetos, which he occasionally eats)
“Tee” (for tortillas-He loves em!)
red (only repeats so far; doesn’t seem to identify this color that I can tell.)
wow
woah
please

He says “–gle” and shakes his hands making an excited sound, always the same sound, when he wants to watch The Wiggles, which is all the time. Pretty sweet. That and Signing Time are the only shows he’s ever made up a gesture to request watching.

ASL (American Sign Language) SIGNS USED, broken down by topic:

NATURE
wind
rain
snow
outside
tree
grass
stars
moon
cold
hot

ANIMALS (he does a sound for all of these as well. some sounds but not signs for certain animals.)
fish
shark
dog
cat
monkey
gorilla
bird
horse

FOOD/DRINK/MEALTIME
water
milk (not as much lately)
eat
drink
cheese
cracker
apple
table
more
cereal
finished/all done
“no thank you” (shakes head while signing thank you. only when prompted, working on thsi instead of pushing food away or throwing it!)

BATHROOM
wash hands
potty
clean
brush teeth

PEOPLE/interaction word signs
baby
Dad
Mom
Grandpa (does this for both grandma and grandpa right now)
uncle
(He has some signs he made up for some aunts and uncles and touches his cheek because of something my mom did a lot when talking to him. haha )
please
down
up
go
please
together
read
help
name
thank you
yes (nods head or ASL version)
Love you (his variation of the “I love you” sign that includes the three ASL letters).

EVERYDAY OBJECTS
hat
book
boat
car

BEDTIME
goodnight
sleepy
sleep
wake up/awake

FEELING WORDS
happy
mad/grumpy/angry
sleepy
surprised

COLOR SIGNS
red

NON-ASL GESTURES USED TO COMMUNICATE
“love you” gesture
“kiss” (blows kisses and will kiss when asked)
(BODY PARTS)
touches head
face
hands
nose
hair
knees
toes
ears
eyes
mouth
teeth
chest

PRETEND PLAY
has done brief pretend play things such as eating fake fruit (pretend eating and sounds), pretending popcorn pieces are eyeballs by holding them up and saying “eye!” and most frequently, pretending something is a hat that he clearly knows is not a hat and saying “hat” and placing it on his head. Also makes toys make animal sounds.

It is hard for me to keep up with everything, but I’m trying my best to keep up since I’m asked what he can say and do a lot! Being with Ethan one day as an acquaintance or stranger (or even family) doesn’t always give a clear picture of what he can do because he is shy at first!

watermark backpack
FIRST FEW DAYS

So far Ethan has been on the sad side at school, but he will still eat and nap and sometimes play! The transitions from 1-on-1 therapy back to class are hard for him as is being dropped off at school. He drank from a sippy once for his classroom teachers so hopefully we will see more progress there as he watches the other kids drink from cups. (Just so you know, if you have a kid with Down Syndrome, sippy cups are not generally recommended-well and many SLPs will say not to give ANY kids sippys, but we just try everything with Ethan because he is nearly 3 and still on a bottle. He loves that bottle even though he can drink from a Tervis..and apparently a sippy!) Most cups for kids on the market now are just so hard for Ethan to get out-I’ve seen him diligently try and fail to get the thickened liquid out. Its hard for me-yes I try it too!

I’ll try to post what he has learned from school and how the transition is going for those who are interested because you are A) an Ethan fan or B) you are considering a developmental center for your child.

Dos and Don’ts When Talking to Kids with Speech Delays

He put on his Daddy's headphones.

He put on his Daddy’s headphones.

These are all from my perspective as a mother of a 2 year old with speech delays and also just general experience with kids of different abilities and sensitivities. (was early childhood major/teaching intern, daycare worker, and child therapist to give a little background)

1) DO try to engage the child (or adult, same premise) in direct conversation as you would a typical kid. You can always adjust the conversation if you do not know the child well and realize there may not be a detailed back-and-forth, but ignoring a kid or only talking to the parents about the child doesn’t give the kid a chance to interact and communicate, and it doesn’t show the same interest as people show in other kids (assuming they aren’t the type that believe children should be “seen and not heard”!)

I appreciate when people ask my kid questions or talk to my kid rather than assume they won’t answer or be nervous they won’t answer. Sometimes my son responds and sometimes he doesn’t, like many pre-K kids.

2) Do NOT assume that because you personally haven’t heard the child talk much that the child will not know what you are talking about.The same rules for “Rated G” conversations apply to kids with or without delays. Kids usually can understand more than you think what you are saying, even if they are completely nonverbal or have limited language. Even if they don’t understand the words, they are always learning and can pop out with an inappropriate or adult word at any time. People don’t mean to do this but it’s definitely hard for even families to remember.

cookie monster more alike than different

3) Do NOT fill in everything for the kid or rush a child along who is working through a word. This is not so much from personal experience since my son is still pretty young and either says a word or doesn’t (or part of a word or sign), but it has always been a pet peeve of mine; as though we are all in too much a hurry to let a young child get practice in constructing their sentences. Some people probably just feel awkward and want the sentence to end, but give some “wait time” first.

4) DO encourage your children or students to treat children with speech delays as just another child and gently correct them if they are treating the children with speech (or other) delays like they are “babies.” I can already see kids Ethan’s own age referring to him as a baby (No in a mean way; they just think he is younger due to the lack of words being spoken, shyness, and stature). I realize that many of the reasons someone might think my son is younger than his age have to do with his size and tongue thrust, etc, I do think speech delays can cause other kids to think they are younger than their age.

That is all I have for now, although I’m sure I will run into some other thoughts on the topic as my child starts at a center and is around other kids and families. Parents of kids with speech delays (or teachers and therapists), what kinds of dos and don’ts would you suggest when interacting with kids who have speech delays? Adults with speech delays? Please comment on the blog so others can learn from that as they read.

Thank you! Coming soon, hopefully some info on how Ethan does with the Picture Exchange Communication System (PECS). He started this in speech therapy and will have some at home. My thought is they will want to continue it at the center to help teachers understand him and encourage more verbalization. He is really on a roll with talking and we are so proud! I was told that the pictures are helpful in group care/school (trying to understand the signs and words of all the children is probably challenging). It sounds like a lot of kids have had quick progress in speaking when PECS was introduced to them. If you have any success stories with PECS, feel free to comment and share what you know as well!