ERIC ED531843: Early Interactions with Children Who Are Deaf-Blind

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by  ERIC

The National Consortium On Deaf-Blindness
The Teach ing Re search In sti tute
Helen Keller Nat ional Cen ter
Perkins School for the Blind
DB-LINK, The Na tional In for ma tion Clear ing house On
Chil dren Who Are Deaf-Blind
Early In ter ac tions With Children Who Are Deaf-Blind
By Deborah Gleason Revised January 2008
A
ll ba bies com mu ni cate. It is through com mu ni ca tion
Are the fol low ing con di tions part that rel at ions hips are formed and sust ained. All pare nts
of your story? If yes, you are not must learn how to int erp ret and res pond to their baby’s
alone. comm un ic at ions in ord er to form the bonds that bec ome the foun -
dat ion for dev elo pm ent. When your child has both a vis ual im-
(cid:116) You may be over whelmed
pair ment and hear ing loss, howe ver, it may be more dif fi cult to
with the idea that your child
und ers tand what she is tryi ng to tell you and you may not be sure
has vi sion and hear ing prob-
how you can best comm un ic ate and int era ct with her. We will
lems. share some ideas to help you disc over how you can make your
child’s world safe and un ders tanda ble and how you and your
(cid:116) You may find it diff i cult to re-
young child can share many enj oy able “conv ers at ions” to gether.
lax and get to know your baby.
You do not need to travel this jour ney of dis cove ry alone. Pro fes -
(cid:116) Med i cal com pli ca tions may re -
sionals in many are as will help you. Many groups and many peo-
quire un end ing ap point ments
ple will of fer ser vices. They will all help, but in the long run, it's
and in ter ven tions.
you, the pare nts and the fam ily, who will have the most prof ound
(cid:116) You may have to make sense of ef fect on your child. Your child will be molded and in flu enced by
the kinds of int era ct ions he or she has with YOU. The cari ng and
con flict ing ad vice or opin ions
trust ing re la tion ship you build with your child will form the foun -
from pro fes sion als.
da tion for her to ex plore and dis cover an ever-expanding world.
(cid:116) Your child may ass o ci ate be ing
In this fact sheet we prese nt num ero us ways you can in tera ct with
touched with un pleas ant med -
your young child. We of fer pract i cal sugg est ions for givi ng your
i cal pro ced ures. He may fuss child con sis tent sen sory cues. We sug gest ways you can rec og nize
or stiffen when any one and then re spond to your child's re sponses. We also in clude tech -
touches him. niques that en cour age ex plo ra tion of the en vi ron ment. Finally, we
prese nt the idea of playi ng simp le games that are not only fun but
(cid:116) Your child may ap pear un re-
also help de velop in ter ac tion and com mu ni ca tion.
spon sive. He may not smile or
make eye con tact. It may be
The View From Inside the Crib
diff i cult to figu re out what
your child en joys or what will
The senses of vis ion and heari ng are oft en ref erred to as the “dis-
make him happy.
tance senses” – that is, they conn ect a child with the world that ex-
(cid:116) In ter ac tions may be frus trat ing tends bey ond his or her pers onal body space. Children who are
and may take a lot of eff ort. sighted and heari ng learn lan guage and many imp or tant conc epts
with out any spe cif i cally planned in struc tion. They learn sim ply
Your child may act pas sive.
by bei ng surr ounded by lang uage and by havi ng ready acc ess to
(cid:116) Your child may need con stant en vi ron ments that are safe, in ter est ing, and in vite ex plo ra tion.
help from you since he or she The senses of vis ion and heari ng help the child org an ize inf orm a-
can’t “ex plore” or “lis ten to” tion from the env ir onm ent. The young child who is deaf-blind,
how ever, does not have acc ess to opp ort un it ies for this “inc id en tal
en vi ron men tal cues.
learni ng” and the inf orm at ion the child does obt ain from cont act
(cid:116) It may be dif fi cult to und er- with peop le and the env ir onm ent is oft en fragm ented or dis-
stand what your child is try ing torted.
to comm un ic ate.
A sighted and heari ng in fant co mes to ant ic ip ate daily rout ines
bec ause of the sights and sounds ass oc ia ted with them and can
TTY [phone] NCDB Voice: [phone]
pre pare him self or her self for the ac tiv i ties in ad - Still no luck. I guess I'll have to res ort to cry ing.
vance. The inf ant who is deaf-blind misses these Finally, I'm back in warm dry clothes and Mom is
cues bec ause of lim ited vi sion or heari ng and may holdi ng me. Aft er all that, though, I'm not sure ei-
find the world un pre dict able and con fus- ther of us is in the mood for playi ng."
ing--possibly even scary. This child needs oth ers to
Michelle is fuss ing be cause she also just woke up
help make sense of the world. From a child's per -
with a messy dia p er. Michelle has no vis ion and a
spect ive, what does it mean to have both a vis ion
mod er ate hear ing loss. Her mom ap proaches
and heari ng loss? Many things may happ en that
Michelle's crib and gently places her hand on
are un pleasa nt "sur prises." She may not un der-
Michelle's chest to greet her with their spec ial
stand or be able to ant ic ip ate what is happ eni ng to
"hello" sign, pauses, then gently brings Michelle's
her. He may try to comm un ic ate, but his cues may
hand up to touch Mom's hair, which is Mom's
be so sub tle they are diff ic ult for peo ple to un der-
"name sign." Michelle be comes quiet and reaches
stand. He may also find it dif fi cult to und er stand
out to touch her mom's face. This has be come a
his par ents' best at tempts at com mu ni ca tion. Let's
spec ial greeti ng. (She knows it's Mom who's goi ng
look at a comm on rout ine--diaper chang ing--but
to pick her up rather than Dad from the feel of
let's do so from the per spect ive of the baby.
Mom's soft hair rather than Dad's rough chin).
Meg has just awake ned from her nap with a soiled Michelle feels her mom’s hands gently lift ing her
dia per. She fusses a bit to let her dad know she's und er her arms as she says somet hing that sounds
awake. She looks up as she hears foots teps and the like "up." Mom waits un til Michelle starts to lift
openi ng of her door to see her dad walki ng tow ard her head to ind ic ate she is ready, then she picks her
her crib. She list ens to her dad talk to her as he up. Michelle wond ers what they'll be doi ng next,
bends down over her crib, picks her up, and car - then feels the soft terry cloth of her changi ng tab le
ries her to the changi ng tab le. Meg reco gn izes ben eath her. She kicks her feet and feels the
where she is from many prev io us ex per ie nces crumply my lar pa per her sis ter so care fully at-
here. She knows what's comi ng! She watches her tached to the foot of the changi ng tab le. She re-
dad take a bag from the shelf, open it, and pull out laxes, know ing this is a fa mil iar place. She feels
a clean dry dia p er. Then she sees him reach for a her mom touch her dia p er and then feels ano ther
small plas tic rect an gu lar box, open it, pull out a clean di a per close to her hand. Michelle grabs it
moist disp osa ble wipe, close the box and put it and enj oys crunch ing it tog ether in her hands
back on the shelf. Aft er Dad rem oves her wet dia - while her mom cleans her bott om. What fun it is to
per, Meg watches him take the cover off a big kick the my lar and feel it move witho ut bei ng re-
round bucket, drop the dia per in, then rep lace the stricted by all those sleepe rs and blank ets! When
cover. Once she's cleaned up, she enj oys the free- she feels the clean dry dia per Mom puts on her,
dom of kick ing her feet with out the re stric tions of Michelle knows she’ll be gett ing up from the
her bulky sleeper. Meg is beg inn ing to learn to an - changi ng tab le soon. As Mom gently lifts un der
tici p ate daily rout ines and to dev elop an und er- her arms and she hears that sound, “up”, again
standi ng of many imp or tant conc epts such as Michelle lifts her head up, lett ing Mom know she’s
obj ect per ma nence (somet hing still exi sts even if I ready. She rel axes into her mom's should er aft er
can’t see, hear, or feel it), “con taine rs” (in/out, she's picked her up and they go off to play to-
open/close, size, shape), and spa tial org an iz a tion. gether.
Alex just woke up with a messy dia per, too. He has
a pro found heari ng loss, but is able to see faces Each Child is Different
and brightly col ored ob jects when they are no
more than 18 inches away. He doesn 't hear his
The amount of in form at ion child ren are able to
mom come into his room and is surp rised to sud -
gather dep ends not only on the amount and type
denly see someo ne movi ng above his crib. Bec ause
of vis ion and heari ng they have, but also on how
his di a per is so messy and Alex is not ter ri bly fond
they learn to use that vi sion and heari ng. Each
of hav ing his dia per changed, Mom dec ides to
child learns to make use of avail able sen sory inf or -
change his di a per quickly in his crib so they can
ma tion in his or her own way. Some chil dren in ter -
get on to do ing more play ful ac tiv i ties. By now,
act with their world prim ar ily through touch,
Alex is be gin ning to rec og nize his mom from her
while oth ers may rely more on vi sion or heari ng.
touch and closen ess and is hopi ng to be picked up
For many chil dren, a com bi na tion will be most
to play but suddenly he's conf used. "What's hap-
use ful.
peni ng to my legs? Why am I cold? What's that
cold wet thing on my bot tom? I don't re ally like
For other chil dren, us ing vi sion, hear ing, and
this. Maybe if I squirm away it will stop. Oops,
touch all at one time is too con fus ing and, in dif fer -
that didn 't work, how about if I stiffen up a bit.
ent sit ua tions, they may choose to rely pri mar ily
Page 2 Early Interactions With Children Who Are Deaf-Blind
Voice: [phone] NCDB TTY [phone]
on one sense. Some child ren use their vis ion and (cid:116) She may crawl to the door and sit, or bang on
heari ng in cons ist ently. Some days they app ear to
the door, as an ind ic at ion that she wants to go
use their vis ion well and other days they do not.
out. Later, she may even come take your hand
Likew ise, a child may seem to hear things well
and take you to the door as a req uest to go
some days and not on other days. This can be con -
fus ing for par ents and serv ice pro vid ers alike. Al - out side.
though comp lete ophthalmological and
(cid:116) Dur ing her bath, she may splash her hands in
au di o log i cal ex am i na tions are es sen tial, they may
the wat er. When she pauses, her dad splashes
not be able to tell you how your par tic ul ar child
his hand near hers, then pauses. She splashes
uses his or her res id ual vi sion or heari ng. This in -
for ma tion is best gained by care fully ob serv ing again. Re cip ro cal in ter ac tions with this
your child in fa mil iar places and at dif fer ent times. back-and-forth turn-taking help est abl ish
early "con ver sa tions."
Communication May Already Tips for Developing Communication
Be Happening Early com mu ni ca tion de vel op ment is based on
four ideas:
There are many ways in which your young (cid:116) De veloping a close and trust ing re la tion ship
daught er or son may alr eady be comm un ic ati ng.
with your child
Watch for these cues:
(cid:116) Using con sis tent daily rou tines in which your
(cid:116) Her breathing may change when she hears
child is fully in volved
grandpa’s voice, rec og niz ing a fa mil iar and
(cid:116) Pro viding your child with cues so he or she
be loved pers on in her life.
can learn to ant ici p ate what is goi ng to hap-
(cid:116) She may open her mouth eag erly when her
pen
spoon touches her lips, clearly in di cat ing she
(cid:116) Giving your child op por tu ni ties to have some
wants more food.
con trol over his or her en vir on ment
(cid:116) She may keep her lips closed as the spoon ap-
You, as the pare nt, take the all-important beg in-
proaches, and if feedi ng att empts cont inue,
ning steps by de vel op ing a close and trust ing rel a -
may turn her head away, lean back into her
tion ship with your child. One of the most
chair, stiffen, or be come ag i tated, in di cat ing
imp or tant things you can do to de velop a sense of
she does not want to eat what is bei ng off ered. bond ing and se cur ity is to hold your baby in your
arms. Your baby will learn how you move and will
(cid:116) When Big Sist er pauses in a pat-a-cake game,
feel safe and sec ure as he en count ers events of the
he may reach for her hands as an in dic at ion
day with you. Rather than feeli ng alone and iso-
he wants to con tinue.
lated in his own world, he will be gin to learn about
(cid:116) When Mom stops rocki ng with him in the a larger world that inc ludes cari ng peo ple and a
va ri ety of in ter est ing move ments, things to touch,
rock ing chair, he may move his body in a
text ures, smells, and perh aps some sounds and
slight rock ing mo tion to in di cate he wants to
sights.
con tinue.
As you join your child in play, you demo n strate
(cid:116) When Dad pauses in a fav ori te game af ter
that you share your child’s in ter ests. You play sim -
say ing, "I'm goi ng to get your nose," he be-
ple turn-taking games tog ether, which, through
comes ex cited, an tic i pat ing the com ing kiss. daily rep e ti tion, a child may learn to rec og nize.
You in ter act in ways that en cour age your child to
(cid:116) She may ac tively and ea gerly par tic i pate in a
tole ra te touch and hand ling, and in which he or
fam ili ar song and movem ent game (such as
she can beg in to demo ns trate enj oym ent duri ng
"Row, Row, Row Your Boat," for five min utes
in ter ac tions. The fol low ing sug ges tions may be
or so; then you may feel her par tic i pa tion help ful as you and your child learn to com mu ni -
fade. She may turn her head to the side. If you cate tog ether:
per sist in con tin u ing the in ter ac tion, she may
“Hello. It’s me. Let’s play.” Alw ays greet your
ac tively re sist mov ing her hands with yours,
child with a spe cial "hello" (touch ing her chest or
stiffe ni ng her whole body and turni ng away. should er, for exa m ple) to let her know someo ne is
Clearly she has had enough. there. Then let her know who it is with your own
spe cial "name sign" (by help ing her feel Dad's
Early Interactions With Children Who Are Deaf-Blind Page 3
TTY [phone] NCDB Voice: [phone]
scratchy chin or beard, or Mom's hair, or a watch Rem emb er to off er pauses. Some chil dren take a
or ring you al ways wear). Tell her what you will do litt le long er to proc ess the inf orm a tion that they
to gether (touch her di a per to in di cate di a per are rec eivi ng. It is imp ort ant that they are given
chang ing, for ex am ple, or in tro duce a fa vor ite toy enough time to re spond. If we don’t all ow the
or movem ent game). Rem em ber to say child this time, she may give up tryi ng. Re spect
“good-bye” bef ore you leave, perh aps by wavi ng your child's pace and foll ow his or her lead. If she
“bye” with your hand und er her hand. has chos en the gigg le ball, you turn it on for her,
then af ter a brief play time, turn it off and pause,
Es tab lish pre dict able rou tines with clear be gin -
waiti ng ex pect antly, leav ing both your hand and
nings and ends. What rou tine ac tiv i ties hap pen
the gigg le ball very close to her hand. She can have
dur ing the day for you and your child? Con sider
some cont rol over the game by tell ing you she
ac tiv i ties such as eat ing, dress ing, bath ing, and
wants "more." She may do this by voc ali zi ng, or
playi ng and think about how you can let your
maki ng movem ents such as kicki ng her feet, wav-
child know what will hap pen, when it will start,
ing her arms, touch ing the ball, or touch ing your
and when it will end. Perh aps you have a spec ial
hand. When you slow down and off er plenty of
blank et on which you play on the floor tog ether.
pauses, you all ow your child time to an tic i pate
Getting this out tog ether and sitt ing down on it
and re spond. You also give your self time to rec og -
will sign al the beg inn ing of play. Putting it away
nize your child’s re sponses.
together sign als the end.
Per haps your son has a mu sic box with il lum i-
Inv olve your child in the whole ac tiv ity. Your
nated movi ng pic tures that he enj oys, but he does-
child will learn the se quence of the ac tiv ity and de-
n't have the mo tor abili ty to turn the knob to
velop many con cepts through his ac tive par tic ip a -
act iv ate the mus ic and light box hims elf. You and
tion in the whole act ivi ty. Rem em ber that a young
your child touch the mus ic box tog ether, pause,
child who is deaf-blind must phys i cally par tic i-
and then you turn the mus ic box on for your child.
pate in the ent ire seq uence of an act ivi ty in ord er
When the mus ic and movi ng lights stop, howe ver,
to gather the same inf orm at ion that an other child
you don’t imm e dia tely turn it back on. In stead,
gath ers just by watchi ng. For ex am ple, at meal-
you wait with both your hand and the toy near
time, you and your child go to the kitchen to-
your son's hands for him to give a sign al, such as
gether, open the cabi n et, take out a bowl, take out
touchi ng the toy or your hand, or wavi ng his arms
the jar of food, open the drawer to get a spoon and
or voc ali zi ng that he wants more. You then imm e-
put the food into the bowl. Perh aps you heat it up
dia tely res pond to his req uest by turni ng on the
in a mic row ave oven and when the bell rings, you
toy for him.
both bring the warm food to the ta ble. At the be-
gin ning of a meal, your child may touch his bib be - Watch for cues. Stay alert for sig nals your child
fore you help him put it on, and when he is may give you that he or she is "ready" to comm un i-
fini shed eati ng he can help take off his bib. You cate and part ic ip ate in turn-taking games. Your
bring the dirty dishes to the sink tog ether and turn child may sig nal that she wants to con tinue the
on the warm wa ter to rinse them. Through out the game or, perh aps, she is "all done" or needs a break
ac tiv ity, you of fer your child sim ple signs (hun gry, from the com mu ni ca tion/in ter ac tion. She may
eat, drink, all done, wash). kick her feet, wave her arms, make sounds, reach
to touch your hand or the gig gle ball, or use an -
Pro vide op por tu ni ties to make choices. Through-
other sign al. When she no lon ger in dic ates she
out the day, give your child choices: bounce or
wants "more," you may of fer her an other choice of
rock? cracker or juice? bells or slinky? pat your
play ac tiv i ties. Look for the fol low ing: quiet alert -
hands or kick your feet? You could show her two
ness, ori ent ing to ward the per son or ac tiv ity,
toys (perh aps the gigg le ball and a my lar bal loon)
reach ing to ward the pers on or ac tiv ity, or vo cal iz -
from which to choose. If she has some vi sion, you
ing. Children have many ways of lett ing you know
may hold the toys where she is best able to see
they would like to cont inue the int era ct ion. Watch
them, alt ern ately movi ng each one to help get her
for small hand or body movem ents that reach to-
vis ual att ent ion and watchi ng to see which one she
ward the per son or ob ject. Watch for search ing
looks at long er or reaches to ward. If she is not able
hand or foot movem ents, a smile, an open mouth.
to see the toys, you can help her touch each toy by
Stay in physi c al cont act (all ow him to lean on you
gently bring ing the toys to her hands (rather than
or keep his hand on you or sit close enough so
taki ng her hands and putti ng them on the toys)
your leg is touch ing his leg). The fol low ing cues
and watchi ng to see which one she touches long er,
will tell you when your child has had enough and
keeps her hand on, or tries to grasp. (Somet imes
needs a break: turn ing away the face or body, lean-
you may have to guess her choice.)
ing back, stiff en ing, fuss ing or cry ing, with draw -
ing, en gag ing in self-stimulatory beh avi or such as
Page 4 Early Interactions With Children Who Are Deaf-Blind
Voice: [phone] NCDB TTY [phone]
head wav ing or eye poki ng, clos ing eyes or mouth, and the pap er ben eath her hands and will know
or shifti ng att en tion to ano ther obj ect or ac tivi ty that you share her int ere st. Pause so she may take
(pull ing on a blan ket, suck ing on fin gers, etc.). an other turn. As you take turns back and forth,
Read ing these cues and re spond ing ap pro pri ately you are havi ng an early “conv ers at ion” about
is a very im por tant part of early in ter ac tions. some thing that is of in ter est to your child. Ini tially,
your son may acc id ent ally bang his arm down on
Inv ent your own games. Perh aps now she'd
his sound/light pi ano toy, not re ali zi ng he has
rather play one of her fav ori te games that you and
caused the sound and the keys to light up. With re-
she inv ented tog ether. You beg in at her toes and
peated exp er ie nces, howe ver, his movem ents will
slowly move your hands up her legs, up her chest,
bec ome more purp osef ul as he re ali zes he made
pause at her chin, then cont inue to her cheeks,
somet hing hap pen. You can join him in play as
endi ng by rubb ing your nose and face against
you inv ent a turn-taking game: First, he bangs on
hers. Bec ause this is a game you oft en play to-
the pia no, then you take a turn and pause and wait
gether, and alw ays in the same way, she has
for him to re peat his turn. By join ing your child in
learned to ant ic ip ate what will hap pen. You may
a move ment or ac tiv ity he likes, by fol low ing your
not ice her exc item ent build as she beg ins to ant ici -
child’s lead, and by im it ati ng your child's move -
pate the fun. Perh aps she starts to move her face
ments and/or sounds, you and your child can
back and forth too, or reach up for your face. When
share many en joy able "con ver sa tions.”
you put your hands back on her toes, she might
kick her feet ind ic ati ng she wants to play again. En cour age use of all sen sory in for ma tion. Help
your child who is deaf-blind learn to use vis ion
Ex plore the world tog ether (“hand un der hand”).
and heari ng for funct ional act ivi t ies and to int er-
It is very imp ort ant for fami ly memb ers to re mem -
pret the lim ited sights and sounds that are avail-
ber that if a child has lim ited vi sion and heari ng
able. Ap proach your child gently to let him know
that they are not aware that you are both “look-
you're avail able for in ter ac tion; do not "surp rise"
ing” at the same obj ect or eng agi ng in the same ac-
him with une xp ected or abrupt touches or sounds.
tivi ty (for exa m ple, the child may not be aware
Att end to and imi t ate any act ions and sounds; in-
that other peop le eat!). Helping your child un der-
vite him to take ano ther turn; let him know you
stand that othe rs are shari ng in the same exp er i-
share his int ere sts. Off er con sist ent touch and ob -
ences with him is an im por tant fac tor in build ing
ject cues to sign al the beg inn ing of an act ivi ty and
re la tion ships and self-esteem.
use movem ent and body cont act duri ng your in-
The hands of a child who is deaf-blind bec ome his ter ac tions.
ears, eyes and voice. If he is exp lori ng a toy, join
Adapt the en vi ron ment. Cre ate clearly de fined
him by gently plac ing one of your fin gers un der
spaces for your child to play and ex plore; pro vide
part of his hands. Likew ise, if you want to show
op ti mal vi sual con trast and au di tory feed back; in -
some thing to a child, en cour age him to place his
clude toys and ma te ri als with sen sory char ac ter is-
hands over your hands as you move tow ard the
tics she will ap pre ci ate (e.g., shiny re flec tive toys
obj ect. This way you can exp lore tog ether. Then
such as a my lar ball oon, toys with vi brat ion, and
you may gently rem ove your hand so he can play
eas ily act iv ated sound toys that prov ide aud it ory
on his own.
feedb ack within his or her range of usa ble hear-
These strate g ies will send a mess age to the child ing). Ob jects may be placed where your child can
that you are joini ng him and not simp ly man ipu - find them--attached to the crib, high chair, or car
lati ng him. When a child’s hands are bei ng man ip- seat, or in a hang ing mo bile or some spe cial play
ul ated hand over hand through a task oft en his space. In this way he or she will not "lose" them.
re ac tion will be to pull away. If, howe ver, a child They may also be placed so any movem ent the
learns to seek out your hands to share and exp lore, child makes pro duces a re sult. You need to pro -
you will nat ur ally be fos ter ing a stron ger de sire to vide op por tu ni ties that not only en cour age your
reach out to you for inf orm at ion and again, build- child to int era ct with the env ir onm ent and the
ing a strong er sense of self-esteem. peop le and obj ects in it, but also give res ults of that
int era ct ion, so he can make the conn ect ion of "I did
Join your child in her play. What is int ere sti ng or
somet hing"/"I made that happ en." The lit tle boy
fun for your child? Perh aps she has one of your
who kicks his feet while ly ing on a wa ter-filled
shiny metal mixi ng bowls filled with brightly col -
mat may not init ially rea li ze that he caused the
ored my lar pap er and she likes to move her hands
movem ent he feels. Howe ver, with rep eated ex pe-
over the crin kly re flec tive pa per in the bowl. You
ri ences-- "The mat only moves ben eath me when I
could sit across from her with your hands partly
move"--the child will learn that he can make some-
und er hers in the bowl. Aft er she moves her hands
thing hap pen. This child will bec ome a more ac-
in the my lar, you can take a turn crink ling the pa-
tive player in the world.
per. She will feel the move ment of both your hands
Early Interactions With Children Who Are Deaf-Blind Page 5
TTY [phone] NCDB Voice: [phone]
Mon i tor lev els of stim u la tion. Be sen sit ive to the (cid:116) The power of mak ing choices
type and amount of sens ory stimu l at ion your
(cid:116) Better und ers tand ing of the world
child can hand le at any given time and adj ust ac-
tiv i ties and ma te ri als ac cord ingly. Be sure to mon i- (cid:116) Com mu ni ca tion in its many dif fer ent forms
tor or elim i nate back ground noise and con fus ing
vi sual ef fects.
Summary
Use ap pro pri ate cues. Use simp le, cons ist ent, and
res pectf ul cues that will be und ers tand able to
your child. Cues should be clearly re lated to the The term "deaf-blind" can be conf usi ng. We know
ac tiv ity from your child’s per spec tive and pre- that very few child ren are tot ally deaf and tot ally
sented just bef ore the act ivi ty starts. To let your blind, and when the term is used, it ref ers to a
child know it is bath time, for ex am ple, you might child who has a comb in a tion of vi sion loss and
dip his foot in the wat er, sign “bath,” pause to ob - heari ng loss. Most young child ren who are
serve his res ponse, then lower him into the tub. In deaf-blind have some usa ble vis ion and/or some
this way your child will learn to ant ic i pate fam il iar usa ble heari ng. The com bined eff ects of both
ac tiv i ties; his world will be pre dict able and in ter - losses, how ever, are far greater than eit her loss
esti ng; and he will de velop a trusti ng rel a tions hip would be by it self. Your child will re quire spe cial
with the peop le who care for him. meth ods of com mu ni ca tion and spe cial ed u ca-
tional serv ices that will sur pass what may be re -
Ex pose your child to lang uage. Children hear a quired for a child who exp e rie nces ei ther vis ion
great deal of verb al lang uage long be fore they loss or hear ing loss alone.
learn to talk them selves. Likew ise, a young child
with deaf-blindness needs to be in volved in an en- It is you, howe ver, the pare nts and fam ily mem-
vir on ment that is rich in all forms of com mu ni ca - bers, who will have the greate st inf lue nce on your
tion. This may in clude words, signs, ges tures, child's dev elo pm ent. Seek out help from oth ers
touch cues, obj ect cues, move ment cues, cont ex- but be as sured that your lovi ng res ponses to your
tual cues, vi sual and/or au di tory cues. Pro vide child, cou pled with ideas gleaned from pro fes-
your child with lang uage in any form he can un- siona ls and those who have "been there," will
ders tand. It is imp ort ant to exp ose the young est make the bigg est diff ere nce. Just as other pare nts
inf ant to sign lang uage. When you use obj ect cues, do, you will dis cover your child’s unique per sona l -
pair them with sim ple signs. As you res pond to ity and cel e brate your child's achieve ments.
your child’s com mu ni ca tions, of fer him sim ple
Deborah Gleason is the Reg ional Coo rd in at or for Asia/Pac ific Pro -
signs. As a par ent, you in stinc tively can dis crim i-
grams for the Hilton/Perkins Int ern at ional Pro gram at Perkins
nate bet ween a cry of hun ger and a cry of pain. Just
School for the Blind. She has many years ex pe ri ence as a Vi sion and
as a mother would res pond to a baby’s cry by say-
Deafblind Teacher/Cons ult ant with young chil dren, and served as a
ing, “Oh, you’re hun gry”, we must prov ide the
nat ional trainer for the VIISA Pro ject at Utah State Univ ers ity.
same re sponse usi ng signs so the child will grad u -
She teaches re gional, na tional and in ter na tional sem i nars on as sess-
ally learn that “eve ry time I’m hung ry and I cry,
ment and fam ily-cent ered int erv ent ion for young chil dren with vi-
mom does this; maybe if I do the same thing I
sual im pair ment, deafblindness, and mul ti ple dis abil i ties.
won’t need to cry.
Spe cial thanks to Marianne Riggio for her sug ges tions and in put.
Help your child in ter act with oth ers. As she be-
Marianne is an Edu c at ional Con sult ant with the Hilton/Perkins
gins to in ter act with other child ren, you can be a
Pro gram and has many years exp er ie nce teachi ng inf ants and chil -
fa cil i ta tor. Help other chil dren learn ef fec tive
dren who are deaf-blind
ways to und ers tand and res pond. Help them learn
how to use their hands to prov ide cues and how to
use their hands to play tog ether in a res pectf ul
way that en cour ages ac tive par tic i pa tion and ex-
plo ra tion by both chil dren.
Playing games is much more than mere play.
Through play, your child can learn a great deal:
(cid:116) Trust and ant ici p at ion that cert ain things will
al ways oc cur
(cid:116) How to make things happ en
(cid:116) Ways to ask for help, ask for more, ask to be
done
Page 6 Early Interactions With Children Who Are Deaf-Blind
Voice: [phone] NCDB TTY [phone]
sess ment, ed u ca tional and com mu ni ca tion
Additional Resources as sess ment, and ge netic eval u a tion.
Iss ues in the Mana ge ment of Inf ants and Young
Al most 100 Mo tor Ac tiv i ties for In fants and Tod - Chil dren Who Are Deaf-Blind. Holte, Lenore ;
dlers. Uriegas, Olga. SEE/HEAR, vol. 6, #3, Sum- Prickett, Jeanne Glidden ; Van Dyke, Don C. ;
mer 2001, pp19-21. Olson, Richa rd J. ; Lubrica, Pena ; Knutson,
Claudia L. ; Knutson, John F. ; Brennan, Su san ;
Ori en ta tion and mo bil ity ac tiv i ties for par ents to
Berg, Wendy. INF ANTS AND YOUNG CHIL-
use with their in fants and tod dlers who are vi su ally
DREN, vol. 19, #4, pp. 323-337, 2006.
imp aired.
Young chil dren with maj or au di tory and vi sual im -
De vel op men tally Sup port ive Care: Hos pi tal To
pairm ents are ident if ied as “deaf-blind.” They have
Home for the Inf ant With Deafblindness.
unique com mu ni ca tion, de vel op men tal, emo-
Greeley, J. Den ver: Col or ado Deafblind Pro ject, tional, and ed u ca tional needs that req uire spec ial
1997. knowl edge, ex per tise, tech nol ogy, and as sis tance.
De vel op men tally sup port ive care is a method of This ar ti cle is in tended to in tro duce pro fes sion als
car ing for fragi le inf ants who are not yet able to reg - from a va rie ty of disc i plines to cur rent pract ices and
u late their phys i o log i cal, mo tor or state sys tems. imp ort ant cons ide ra tions in int erv ent ion with in-
The strat e gies in clude sup port ive en vi ron ments, fants and young chil dren who are deaf-blind.
pac ing and timi ng, trans it ion supp ort for new env i-
Learn ing To Com mu ni cate: Strat e gies for De vel -
ron ments and sit u a tions, sup port ive move ment,
op ing Com mu ni ca tion with In fants Whose Mul ti -
han dling and po si tion ing, and sup port ing sleep
ple Dis abil i ties In clude Vi sual Im pair ment and
wake cy cles.
Hear ing Loss. Chen, Deborah Ph.D. Cal if or nia
Ess ent ial Ele m ents In Early Int erv ent ion: Vis ual Deaf-Blind Ser vices. RE SOURCES, vol. 10, #5,
Im pair ment and Mul ti ple Dis abil i ties. Chen, Summ er 1999, pp. 1-6.
Deborah (Ed.) New York: AFB Press, 1999.
Dis cusses se lected strat e gies that fam i lies and ser-
Pres ents in for ma tion about as sess ment and in ter- vice prov ide rs can use for comm un ic at ing with in-
vent ion strate g ies for inf ants and young child ren fants (birth to 36 months) who are not yet usi ng
(birth to 36 months) who have vis ual imp airm ent in words and who have sign ifi c ant and mult ip le dis-
ad di tion to other dis abil i ties, in clud ing deaf-blind- abil i ties. In cludes in for ma tion on cueing, and se-
ness. Inc ludes: a des cript ion of early int erv ent ion lect ing and us ing first key word signs for the
ser vices; re cent re search about brain de vel op ment; in fants’ ex pres sive com mu ni ca tion.
early de vel op men tal needs; the im por tance of care-
Po si tion Pa per on Ser vices to Young Chil dren
giver in ter ac tions; early iden ti fi ca tion, in clud ing a
dis cus sion of con di tions as so ci ated with mul ti ple with Vis ual Im pairm ents and Deafblindness in
dis abil i ties; func tional vi sion as sess ment; hear ing Nat u ral En vi ron ments : Ex ec u tive Sum mary.
loss as sess ment, in clud ing func tional hear ing as - Miller, Tom; Bernas-Pierce, Julie. (2005).
sessm ent; and int erv ent ions that foc us on early The pur pose of this pa per is to prom ote spe cial ized
com mu ni ca tion. AFB Press, Cus tomer Ser vice, P.O. groups as a serv ice op tion within Natu ral Env ir on-
Box 1020, Sewickley, PA 15143, [phone], (412) ments law and imp lem ent a tion in ord er to enh ance
741-0609 (fax). the dev elo pm ent and supp ort the fami l ies of chil-
dren with vis ual imp airm ents, birth to three. A lon-
The In ter vener in Early In ter ven tion and Ed u ca -
ger vers ion of this pap er is also availa ble:
tional Sett ings For Child ren and Youth With
http://www.perkins.org/down loads/
Deafblindness. Alsop, Linda ; Blaha, Robbie ;
NatEnvirMonograph.pdf.
Kloos, Eric. NTAC Brief ing Pa per Monmouth,
OR: The Na tional Techn i cal Ass is tance Con sor - Pro mot ing Learn ing Through Ac tive In ter ac tion:
tium for Child ren and Young Adults Who Are A Guide to Early Comm u ni ca tion with Young
Deaf-Blind, 2000. Child ren Who Have Mult ip le Disa bili t ies. Klein,
M. Dia ne, Ph.D.; Chen, Deborah, Ph.D.; Haney,
Des cribes the work of int erv ene rs in early int erv en -
tion and ed u ca tional sett ings for child ren and Michele, Ph.D. Bal ti more: Paul H. Brookes Pub -
youth who are deaf-blind. A dis cus sion of iss ues, lish ing Co., 2000.
con cepts, and ter mi nol ogy as so ci ated with The Pro mot ing Learn ing Through Ac tive In ter ac-
intervenors and the role they play is pro vided. tion (PLAI) cur ric u lum is de signed pri mar ily for in-
Avail able from DB-LINK. fants, pres chool ers, and young child ren with sev ere
or mul ti ple dis abil i ties (in clud ing deaf-blind ness)
Is sues in the Eval u a tion of In fants and Young
who are not yet ini ti at ing sym bolic com mu ni ca tion
Child ren Who Are Susp ected of or Who Are
and who have a lim ited repe rt oire of com mun i ca -
Deaf-Blind. Holte, Lenore ; Prickett, Jeanne Glidden ;
tive be hav ior. It can also be used with older chil -
Van Dyke, Don C. ; Olson, Richa rd J. ; Lubrica, Pena ; dren who have not yet dev elo ped int ent ional
Knutson, Claudia L. ; Knutson, John F. ; Brennan, Su - com mu ni ca tion.
san. IN FANTS AND YOUNG CHILD REN, vol. 19, #3,
pp. 213-227, 2006. Tac tile Strat e gies for Child ren Who Have Vi sual
Im pair ments and Mul ti ple Dis abil i ties : Pro mot -
This art ic le prov ides an overv iew of the foll ow ing
ing Com mu ni ca tion and Learn ing Skills. Chen,
topi cs: the eff ects of deaf-blindn ess on dev elo p-
Deborah; Downing, June E. New York: AFB Press, 2006.
ment, causes of deaf-blindn ess, and early screeni ng
and as sessm ent strat e gies. It add resses heari ng and This book is des igned to help serv ice prov ide rs and
vis ion evalu a t ion, dev elo pm ent al and cogn it ive as- fami ly mem bers learn to int era ct through touch
Early Interactions With Children Who Are Deaf-Blind Page 7
TTY [phone] NCDB Voice: [phone]
with chil dren who need tac tile in form at ion to sup - Na tional Fam ily As so ci a tion For Deaf-Blind
port their learni ng. Topi cs inc lude: the sense of [NFADB]
touch, sup port ing in ter ac tions though touch, as-
NFADB is a na tional net work of fami l ies foc used on
sess ing tac tile skills and plan ning in ter ven tions, fo-
iss ues surr ound ing deaf-blindn ess. As a na tional
cus ing on tac tile strat e gies, con sid er ing mul ti ple
or ga ni za tion, NFADB ad vo cates for all per sons
com mu ni ca tion op tions, adapt ing man ual signs to
who are deaf-blind, sup ports nat ional pol icy to
meet a child’s needs, se lecti ng app rop ria te tac tile
ben e fit peop le who are deaf-blind, en cour ages the
strat e gies, and en cour ag ing emer gent lit er acy.
foundi ng and strengthe ni ng of fami ly org an iz a -
Cost: $39.95. Availa ble from AFB Press. Phone:
tions in each state, pro vides in form at ion and pub -
800-232-3044.
lishes a newsl et ter. 111 Mid dle Neck Road, Sands
Pub lisher’s web site: http://www.afb.org
Point, NY 11050 [phone] x275,
Fax: [phone], http://nfadb.org
Programs Na tional Con sor tium On Deaf-Blind ness [NCDB]
The Nat ional Con sort ium on Deaf-Blindn ess
(NCDB) is a na tional tech ni cal as sist ance and dis -
State Deaf-Blind Pro jects, Serv ices For Chil dren
semi na tion cen ter for chil dren and youth who are
With Deaf-Blind ness Pro grams. U.S. De part ment deaf-blind. NCDB, Weste rn Ore g on Univ ers ity,
of Ed u ca tion, Of fice of Spe cial Ed u ca tion Pro - 345 N. Monmouth, Monmouth, OR 97361 (800)
grams 438-9376, Fax: [phone], [email protected],
Pro jects as sist states in as sur ing the pro vi sion of http://nationaldb.org
tech ni cal as sis tance to agen cies and ed u ca tion per-
sonn el servi ng child ren and youth who are
deaf-blind. They sup port res earch, dev elo p ment,
rep li ca tion, pre-ser vice and in-ser vice train ing, pa-
rent al inv olvem ent act ivi t ies, and other act ivi t ies to
imp rove serv ices to chil dren who are deaf-blind. This docu ment is also avail able on the web at
For in for ma tion con cern ing par tic u lar state pro- http://nationaldb.org/NCDBProducts.php
jects and con tacts.Cont act DB-LINK, (800)
438-9376, TTY: [phone], Fax: [phone],
[email protected]
http://nationaldb.org/peoplePrograms.php
Please feel free to copy this publ ic at ion with
the ap pro pri ate ci ta tions. For ad di tional
Hilton/Perkins Pro gram, Perkins School for the cop ies or cop ies in al ter na tive for mats, con -
Blind tact DB-LINK.
Hilton/Perkins pro gram pro vides con sul ta tion,
train ing and tech ni cal as sis tance to pro grams
througho ut the na tion and in dev elo pi ng coun tries.
Em pha sis is on pro gram de vel op ment for
(cid:43)(cid:32)(cid:32)(cid:40)(cid:32)(cid:32)(cid:58)(cid:32)
multi-handi c apped blind and deaf-blind in fants,
tod dlers and school-aged chil dren.
Hilton/Perkins NCDB
175 N. Bea con Street 345 N. Monmouth Ave
Watertown, MA 02472 Monmouth, OR 97361
[phone], Fax: [phone] Voice [phone]
[email protected] TTY: [phone]
http://www.Perkins.org Fax: [phone]
[email protected]
http://nationaldb.org
Na tional Early Child hood Tech ni cal As sis tance
Sys tem [NEC*TAS]
NCDB (The Na tional Cons or tium on Deaf-Blind ness) is Funded through award
NEC*TAS is a con sor tium pro ject in tended to de- #H326T060002 by the U.S. Dep artm ent of Edu c at ion, OSERS, OSEP. The opin -
sign and prov ide techn ic al as sist ance for four pri- ions and poli c ies exp ressed by this pub lic at ion do not nece s sari ly ref lect those of
NCDB, The Teach ing Re search In sti tute, or the U.S. De part ment of Ed u ca tion.
mary tar get pop u la tions—Part C Staff, In ter agency
Co or di nat ing Coun cil mem bers and staff, Part
B-Sec tion 619 staff, and Early Child hood pro ject
staff. As sists tar get pop u la tions in de vel op ing and
pro vid ing com pre hen sive, cul tur ally sen si tive, and
co or din ated serv ices for young child ren with spe -
cial needs and their fam i lies.
Frank Por ter Gra ham Child De vel op ment Cen ter.
500 Nat ions Bank Plaza, 137 E. Frankl in Street, Cha-
pel Hill, NC 27514, [phone], E-mail: This pro ject is sup ported by the U.S. Dep art ment of Edu c at ion, Off ice of Spe cial Edu -
[email protected], TTY: [phone], Fax: (919) cat ion Prog rams (OSEP). Opini ons exp ressed herein are those of the aut hors and do
not nec es sar ily rep re sent the po si tion of the U.S. De part ment of Ed u ca tion.
962-8300, http://www.nectas.unc.edu
Page 8 Early Interactions With Children Who Are Deaf-Blind