Kamdyn, Communication, and Down syndrome

 

 

I'll start with a few "older" videos of Kamdyn and then put some more recent ones at the end. 

 

 

Summer 2012, 2 years:

Kamdyn wasn't saying much of anything at this point, mostly babbling.

 

 

October 2012, 2 1/2 years old

She wasn't thrilled about me insisting that she say "chip", but I knew she could.

 

December 2012, about 2 1/2

Kamdyn has always loved music and singing.  She tries to sing along and mimic the words.  Right now, she does a really adorable "Jesus loves me".  I'll have to get that on video.

April 2013, almost 3 years old

Chi-Chi is our (Madison's) beloved, now deceased, hermit crab by the way. 

****************************************************************************


I took this video in March 2013 (one month before her 3rd birthday):

Every night before bed, we had a ritual of Kamdyn repeating "I love you".  It was a pretty big deal in this video when, on her own, she said, "I love Mommy."  Since then, she has a lot more spoken words, and they are more clear.

The following video was taken May 2013(right after she turned 3).  Most of the things she says right now are single words.  Her phrases right now are "I love Mommy", "I love Daddy", and the other day she said (for the first time on her own) "want juice".  She says "I love Mommy" in this video and some other words at the end.

 

It is nice to see her making progress with her speech.  Both times she has had tubes put in her ears, I have noticed a huge difference.  Prior to her second set of tubes in February, she was not saying "Mommy".  She only had a few words.  The first video was taken a month after her tubes, and she was already talking so much more.  So if any new moms or just kids who are younger than Kamdyn, I would strongly encourage you to stay on top of those hearing tests and any fluid in the ears.  It really does make a difference.

 

The other thing I would really recommend to anyone who is coming after us would be sign language.  I know some people are skeptical, but I am telling you, it is great.  Start learning the signs and using them when your little one is a baby.  It will help you get in the habit of doing them.  It will help you and others in your family to learn them.  And your little one will be soaking them in, even if they don't have the fine motor ability to do them.  Once you know they can do them, wait for them to do the sign before you give them what they want. 

 

I remember when Kamdyn first started signing.  At mealtimes, when she wanted another bite, she would scream.  I started telling her "No screaming.  Sign "more", while signing "more", and then ignoring her screaming until she signed "more".  Guess what!  She signed "more" and the screaming stopped.  It completely changed mealtimes from being loud, chaotic, and miserable to much more quiet and peaceful, or as quiet as they can be with 3 young kids anyway.  Now, we do the same thing with saying the words that we know she can say, like "chip" in the video above.  It's easier for her to just point, but I try to get her to say the word if I know she can.

 

 

Here's a recent video of some of her words:

 

Kamdyn still does the sign for a lot of the words that she says.  She almost always signs "more" when she says it, so that's why I was trying to get her to sign it.  Watching the video now, I can see that she did, but I just missed it, because I was videoing and trying to show her flashcards at the same time.  Even now, with her saying some words, the signs are helpful, because some words sound a lot alike.

 

 

Communication and Down syndrome (young children ages 0-5)

The following is taken from the handouts and notes from a session called Developing Communicatoin and Play Skills in Young Children with Down syndrome by Kristin Greene, M.S., CCC-SLP and Stephanie Metz, M.S., CCC-SLP at the Trisomy 21 Symposium at the Children's Hospital of Philadelphia.

Kids with Down syndrome do well with:

1. gestural advantage
2. visual learners
3. strong communicative intent
4. intersted in social interaction and play
5. imitative
6. early access to support and therapy
7. receptive skills usually more advanced than expressive
8. certain areas of language dvelop more easily, such as vocabulary

Factors that lead to success:

1. experiences and exposure to language
2. opportunities to use language
3. adult response to attemtps at gestring, speaking, and initiating communication and play
4. support, encouragement, and praise
5. individulaized treatment plan
6. family involvement

Importance of Gestures:

• gives them an early way to express themselves and communicate
• helps them to understand language
• gestures often lead to words
• continue signs and gestures even after they start speaking
• gestures are easier to use
• promote signs and gestures at home
• parents using them affects whether the child will use them
• first signs and gestures are often first words to speak
• begin teaching with hand-over-hand
• Signing will not prevent speaking
• Make sure you say the word with the sign.

Activities to encourage speech

0-12 months:

• peek-a-boo, gonna get you, tickle, sleep/wake up, other social games
• sing songs with signs and gestures
• read books and point to pictures
• makes sounds in play-- car goes "vroom", cow says "moo".....
• play "in and out" games with toys
• repeat sounds and noises they make: sneezes, coughing, raspberries, kisses...
• use animal and enviromental sounds
• model gestures like waving bye-bye, pointing, head shaking for no, lifting arms for "up", blow kisses, knocking, drinking, eating

1-2 years:

• practice pointing in books and things around the community and house
• read books and label pictures and actions
• body parts and clothing items: Mr. Potato Head, dressing bear or baby, boo-boo Baby
• sings songs and stop and let them fill in, even if its just jibberish
• look at family photos and label and point to places, objects, and people
• give short commands for the child to follow
• figure out their approximations and gestures and respond to them
• encourage fill in the blank during songs and phrases
• speak to your child one level above where he/she is speaking.  If they are using one word, parents use 1-2 word phrases.

2-3 years

• talk about colors and use the signs
• count and quantity concepts (big/little, more)
• lable and point to body parts and clothing items
• point to things in books and practice saying what it is.  There's the dog.  Dog says "woof"
• find ways to get the child to ask for help
• practice answering yes and no
• demonstrate and model different ways to play with toys

3-5 years

This is when kids usually have a vocabulary and speech explosion!

• Use gestures and signs to continue to support language, even when they begin talking.  It helps fill in the blanks.
• model and practice pronouns: I, me, mine, you, your, he, she
• model prepositional phrases: in, on, under, below.....
• expand vocabulary with action words

More ways to encourage communication and requesting:

• Do not anticipate needs.  Get them to ask for things in whatever way they can.  Give paper with no crayons and get them to ask.
• use pauses and wait time to get them to request with a word or gesture
• give choices and have them point or say which they want
• use self-talk to describe what you are doing, seeing, hearing, feeling
• expand on what your child says by adding one or two words.  daddy-- daddy home, shoe--Mommy's shoe...
• use real objects rather than pictures-- use an animal puppet or stuffed animal while singing Old McDonald had a Farm.
• lots of praise when your child attempts to request or communicate
• accept any gesture, sign, or vocalization.  The more they try, the better they will get
• repeat words or activities that you are teaching
• use physical cues like hand-over-hand for gestures and signs
• use sound cues for speaking.  Close your lips together and run your finger over your mouth for "mmmmmmm" "mommy" or "buh buh" bubbles

Core Vocabulary Book: they help your child learn to say important words that are needed for daily use as clearly as possible

• what to include: child name, age, family members, other important people, foods, drinks, toys, activities they do, favorite places, pets
• get a small photo album from the Dollar Store
• Place pictures in album with the word written on or below the picture
• start with 10-20 words (or phrases for older kids) and build from there
• once the 10-20 are mastered, remove and replace
• read at least once a day to practice
• promotes clearer speech and expressive language

Areas to build vocabulary

1. Bath time
2. meal time
3. dressing concepts
4. play

Toys to consider:

1. board books- repetitive books are best: Brown Bear
2. pop up toys with dorrs to open and close
3. toy foods and kitchen
4. baby dolls with accessories: bottle, diaper, potty, blanket, etc
5. doll house, farm, car garage, fire station, etc
6. wooden puzzles with big pieces, increase degree of difficulty as the master
7. ball toys- balls in a canister, that roll down tubes or slides...
8. water in a plastic bin with fish or animals
9. bubbles- you can pop, point, say "buh buh bubbles"....

Communication and Down syndrome (school-aged children)

The following is taken from the handouts and notes from a session called Increasing Communication to Decrease Frustration in School-Age Children with Trisomy 21 by Susan Beidermann, M.A., CCC-SLP and Marianne DeCicco, M.S., CCC-SLP at the Trisomy 21 Symposium at the Children's Hospital of Philadelphia.


Speech is the most difficult aspect of communication to learn and use.  Speech will develop later than communication and language.

Communication strengths for people with Down syndrome:

• vocabulary- experiences build vocabulary.  encouraging a variety of experiences encourages vocabulary.  while vocabulary continues to improve, grammar often does not continue to develop.  problems with using grammar in speech are common.
• visual learning of communication skills- learning from watching and experiencing

Communication weaknesses for people with Down syndrome:

• receptive/expressive communication gap- they can understand more than they can express.  life experiences improve this gap.  home is usually better than school, because home is more familiar and consistent.
• difficulties in auditory memory- easily forgetting things they hear (hence visual learners), difficulty remembering words long enough to be able to process and respond to them.
• difficulties in grammar and complex conversation skills.  difficulty with the order that words should go in and with plural and possessive.
• topicalization- how to choose, stay on, end, and change conversation
• speech intelligibility problems- intelligibility = ability to be understood, due to a variety of reasons(stutter, low muscle tone, tongue thrust, apraxia), people with Down syndrome can be difficult to understand when they speak.

Working to improve communication:

• Decide what to work on:

                       1.  choose according to interests
                       2.  address school and home needs first

• Work to understand vocabulary words, learn to use new words, and practice those vocabulary words.

                        1.  choose words related to important events: preparing a Holiday meal with        
a list of guests, recipes, food, ingredients, cookware needed, dishes, and afterwards review the holiday with lists and photos. 
                        2.  choose vocabulary based on what they are learning at school
                        3.  use board games (Scattergories)
                        4.  Role play:  salesperson and customer
                        5.  Go shopping:  talk about clothing, how it feels, what you do with it, talk about types of stores, items in the stores.
                        6.  Create a photo/vocabulary book with events, activities, people.......

• Teaching through reading

                        1.  "Research has shown progression in reading skills is linked to progress in language and short term memory skills."
                        2.  "Researcher Sue Buckley suggests introducing reading when a child can match pictures, select pictures to demonstrate comprehension, and has a comprehension of 50-100 words.

• Helping conversation skills:

                       1.  small conversation groups
                       2.  social stories
                       3.  comic strip conversations
                       4.  video modeling (recording conversation to watch)
                       5.  talk about conversation skills:  turn taking, looking people in the eye, listening to the other person, stay on topic, ask questions, speak clearly, speak up for yourself

iPad apps:
1.  iConverse

Speech/ communication for children with Down syndrome

I've been meaning to do this for a while, but you know how it is.  If you haven't noticed, I added a page at the top that has a bunch of great info from a very good Speech Pathologist who was at the NDSC conference in Texas.

If you read the book, Early Communication Skills for Children with Down Syndrome, you will read about the differences between communication, language, and speech.  A child learns about communication when they figure out that they can affect their environment and people around them by what they do.  That breaks down some more into language, where they are giving a message through actions and body language.  Language is a shared code, and it is one that any mother can understand.  This is why mommy knows what her baby needs simply by watching or hearing the type of cry.  This shared code is why I can look at Kamdyn and see that she is uncomfortable or nervous when no one else can see it.  I have learned to speak her language.  Language also includes gestures like pointing and waving, pictures, sign language, and speech.  Speech, specifically, is verbal language.  Speech itself is a complex process that requires muscles, movement, and coordination, which can be worked on prior to speaking.

Before a child can speak, there are many skills that have to be accomplished.  The child must have visual skills, tactile skills, imitation skills, auditory skills,  motor skills, and cognitive skills.  If the child cannot see properly, she will not be able to develop skills such as visual tracking, eye contact, visual attention, or imitation.  Similarly, if a child has hearing loss or difficulties, learning to speak will become more difficult, which is why many children with Down syndrome have ear tubes placed at such a young age.  We are hoping Kamdyn can have the procedure for tubes soon, because she has had issues with inner ear fluid and ear infections.  When Kamdyn was a newborn, and I heard so many references to low muscle tone, I did not understand what that really meant.  Low muscle tone.  Ok.  Aren't all babies floppy.  But here is an instance where low muscle tone plays a part, because low muscle tone in the face will make it more difficult to control the muscles for speaking.

Lastly, a child needs certain cognitive skills before speech will occur, and even before the child will use sign language.  Kamdyn is 16 months old now, and she has 4 signs:  waving hello and bye bye, "dog", "more", and "all done".  We have worked on others, and I believe she recognizes other signs.  Brad and I are in a competition to see if she will sign Mommy or Daddy first.  Yeah, Team Mommy!  Anyway, she just started signing those in the last few weeks, and I was starting to wonder what the deal was, and if I wasn't doing something right.  But there are skills that a child needs before they can sign:

1. object permanence:  knowing that an object still exists when they cannot see it.  They may not be able to see any food, but if they sign "food", they will  get some.
2. cause and effect:  knowing that their actions produce an outcome
3. means-end: (cause and effect with a plan)  they have to pull a string or push a button to get the song to start, or they have to do their hands in a certain way to get more food during dinner.
4. words have meaning

Once I was able to see that Kamdyn had developed these skills, she was also able to sign.  I think that as she continues to strengthen her fine and gross motor skills, she will be able to sign more, hopefully "mommy" first ; )

Through play, you can practice the skills listed above, but I feel that a child can only develop these skills as they are able.  We realized that Kamdyn understood object permanence, when she screamed until we gave her more french fries while we were at dinner.

Things to work on:

1.  Feeding skills:  Strengthening those muscles in the face will help with speech.  Many parents prefer a straw cup over other sippy cups, because they feel that it helps strengthen the muscles.  We have recently been working with Kamdyn on her tongue thrust while she is drinking, because it causes her to spit out a lot fluid.  We use an open cup (shot glass, actually) to hold her tongue back and she takes a tiny sip.  We've just started, so we'll see how it helps.  Also, being able to use the jaw to chew from side to side is a good skill to develop. 

2.  Children who have tactile defensiveness can work with their Speech Therapist or a Feeding Specialist to overcome these issues.  At a recent appointment with the Feeding Specialist, we were told that they see many children who have these tactile issues. 

3.  Imitation skills:  A child learns imitation by you imitating them first.  It may feel silly, but when they make a noise, shriek, babble, or whatever, repeat it back to them.  They will start to play along, and they will keep making noises back at you.  It ends up being a fun game that you can play back and forth.  Eventually, you will be able to make a noise or sound, and she will repeat it back to you.  The other day during therapy, Kamdyn's therapist lifted her arms up in the air, and Kamdyn lifted hers up.  Then, she clapped, and Kamdyn clapped.  And finally, the therapist said, "A cow says, Mooooo", and Kamdyn said, "oooooooo".  The whole cow thing might seem random, but they had been playing with a cow toy.  Kamdyn

4.  Oral Motor skills:  The best way to improve oral motor skills is to address any feeding issues with a specialist and actually vocalizing by making sounds.  The more sounds the better.  There are some who use Talk Tools Therapy, while others do not feel it is useful.  Here's a Resource Guide to Oral Motor  from the NDSC.


5.  Sound production:  The website Down Syndrome Education says, 

Children with Down syndrome usually have considerable difficulty with speech sound production and delay in being able to say initial sounds will lead to delay in saying first words. Sound production can be encouraged from the babble stage in the first year of life and speech sounds can be specifically practised from 18 months of age or earlier.

 Speech Resource Guide from the NDSC. 


You can read about other speech disorders on the blog  Let's Talk Down Syndrome.

 Another good article from the NDSS website is Speech and Language Therapy

Hope that can be helpful.