Helping Families Accept Technology 20 October 2017

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Jack Stone
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1 Things Have Changed HELPING FAMILIES ACCEPT AND USE TECHNOLOGY Jane R. Madell, PhD, CCC A/SLP, LSLS Cert AVT Before newborn hearing screening parents brought children for evaluafon because they suspected hearing loss. Obtaining a diagnosis was almost a relief because it explained lack of response to sound and/or lack of speech-language development Now, parents have no reason to be concerned and diagnosis comes out of the blue. 2 SupporFng Parents How Do Parents React? Most hearing loss is now idenffied at birth Advantages Children can be fit with technology and start therapy early Joint Commission recommendafons» Screening by 1 month» Diagnosis by 3 months» Management by 6 months Listening age = Chronological age Language delays can be eliminated or minimized Disadvantages Parents do not get to know and love the child before having to deal with the disability Some move ahead What do I need to do? Some are paralyzed This can t be possible How do you know these results are correct? We have to wait un>l he is older. He is too young for hearing aids? 3 4 1

2 Grief in CommunicaFon Disorders Dealing With Parental Feelings: Inadequacy Because there is no finality grief lasts and lasts With changes in life the grief resurrects itself Luterman Disability normal Needing new hearing aids Moving to a CI StarFng school Changing school IEP fights DaFng or marriage of friends children or siblings Seeing other children doing something your child does not do (Which may or may not be related to hearing loss) I don t know anything about deafness The desire to be rescued (and our desire to rescue) What is the role of the professional Not rescuer Cheerleader What happens when the professional becomes a rescuer? Parents feel more inadequate 5 6 Anger Confusion ViolaFon of expectafons We spend so much money sending a man to the moon, why can t we cure deafness. Seeking a cure Seeing their child hurfng How do we as professionals handle anger directed at us? Recognize it for what it is Unfilled expectafons This must be very difficult for you I know you are angry Displaced anger anger at child for being deaf, at audiologist or ENT for not curing deafness Parents may not understand our terminology InformaFon based counseling vs support counseling Advice from everyone on the street 7 8 2

Involving Parents In DiagnosFcs AcFve involvement of the parents in the diagnosfc process diminishes the denial mechanism and strengthens the bond between the audiologist and the parents.

3 Involving Parents In DiagnosFcs AcFve involvement of the parents in the diagnosfc process diminishes the denial mechanism and strengthens the bond between the audiologist and the parents. Parental safsfacfon with follow up tesfng of children who failed newborn hearing screening was a funcfon of parents being empowered as partners in the process. The parents have a vital role Involve the family acbvely in the test procedure. Engage the family as much as possible in elicifng or scoring responses. Have the family parfcipate fully in the diagnosis. Ideally, the diagnosis will be made together Steps to including parents as co-diagnosfcians The listening bubble Concept Karen Anderson Encourage the parent to be at your side during look for responses on the ABR or OAE equipment, and in behavioral tesfng. Let parent s see what the child responds to with and without technology. In corroborafve tesfng in the sound booth have one parent sit with you if possible. Describe what you are looking for Enlist his or her help in observing the child s responses. In speech-language-educafonal evaluafons let parent observe tesfng and comment on performance Parents are ojen surprised with difficulfes children have in tesfng because they are not seen at home since parents set things up to facilitate things for child Describe the loss in terms of the child having a smaller listening bubble A smaller listening bubble explains why the child will respond somefmes (loud sounds or those close to them) but not others The listening bubble is even smaller in noise Different voices can be easier for the child to detect bigger listening bubble for Dad than for Mom This concept is also useful for children as they get older and try to understand their hearing loss

Speech Understanding Speech percepfon test results are usually described in percent but not all people really understand the concept of percent loss Would that be a good score on a math test?

4 Speech Understanding Speech percepfon test results are usually described in percent but not all people really understand the concept of percent loss Would that be a good score on a math test? Describe the results in terms of a number of pieces missing from a picture puzzle. A lack of 12 pieces from a 100 piece puzzle doesn t seem like much, but 60 from a 500 piece is enough to make the picture difficult to recognize. The Counseling Role Following Diagnosis All decisions are based on the parents desires Parents need to be educated about the choices How do clinicians empower parents at this stage? We help parents idenffy their goals for their child. Provide informafon about all opfons and what they mean. Be honest, all opfons are not equal Different expectafons for children in an auditory program vs a sign program 13 How Much Should We Answer? What Else Might We Do? Parents: If Andrew was your child, what would you do? Professional: I have worked with many children. There is no doubt in my mind, that if Andrew were my child, I would use a(n) approach. I am confident he will do well if you go with. Making the decision for the family Sends messages that the parent is not competent/able to handle certain situafons. Successful outcome is aoributed to the professional rather than family Family does not learn to become responsible for decisions and for doing what it takes to help child succeed I can see that you are having a hard Fme with this decision. Can you tell me more about why this decision is so difficult? Do you have quesfons I can answer to help you make a decision?. 4

5 The Counseling Role In The HabilitaFon Process RouFnely and acfvely engage parents in dialogue about the child s goals, progress, home carry-over EffecFve dialogue requires pracffoner to be knowledgeable regarding what it takes for success in each of the opfons be familiar with normal speech, language, auditory, and cognifve development Listen to parents. Recognize their stress and let them talk about it. Arrange parent support Counseling Parent to parent Validate parents feelings Professionals Feelings The coping process Denial recognize it for what it is Resistance proving the professionals wrong AffirmaFon admiqng to self and the world that HL is real Acceptance geqng the disorder into perspecfve Flight Parents can get stuck any place in the process Professionals need to recognize what stage families are in and realize that they are not angry at us 18 AcFve Listening HELPING PARENTS MOVE ON Don t respond with informafon Listen Validate what parents are saying Guide the discussion Don t lecture Don t make their decisions Don t create co-dependency

6 Non-verbal Strategies What Can We Do To Move Parents Along? Be available Sit down Maintain eye contact Turn off phone, beeper etc. Let the other person talk Display an openness in body language Give them a liole Fme Provide informafon about hearing loss Introduce them to other parents Let them meet other kids who are a liole older and successful Keep making appointments so you do not loose contact with the family Try and find out what is holding them back Grandparents? What Happens If Parents Do Not Follow-up? What Can You Learn From a Home Visit? How much Fme is it appropriate to wait? How ojen should the audiologist contact the family? What do we do if parents just refuse services? When is it parents choice When is it child neglect Discuss the the effects of waifng Help them talk about why they are not moving on Is the child wearing technology? CommunicaFon environment Therapy/play materials How do parents/family respond to child outside of the therapeufc environment?

7 How Do We Discuss CommunicaFon Choices? TALKING ABOUT COMMUNICATION CHOICES We are obligated to inform parents of all the opfons We are also obligated to discuss the advantages and disadvantages of each. They are not equal How do we do this without interjecfng our point of view? 95% of children with HL are born to normal hearing parents Today s technology permits auditory access for almost every child with HL Auditory access is essenfal for auditory brain development Spoken language is the parents natural language For them to learn sign will take some Fme It s not possible to provide a rich language environment to a child in a language in which they are not fluent The community of ASL users is shrinking The language used has a significant effect on reading and academics Recent research indicates that even minimal use of sign reduces language and literacy by end of elementary school What Do Parents Need To Know Do you know your child s type and degree of hearing loss? Do you know how to manage technology? Do you know what is happening in therapy? Do you know what is happening in school? Do you have resources for support? Are you comfortable talking about your child s hearing loss With teachers With neighbors With family With other children HELPING FAMILIES ACCEPT TECHNOLOGY

8 What Does AccepFng Technology Mean? What Is The Professional s View? Is it really about the technology? Is it about accepfng the hearing loss? Is it about accepfng the child? What are the parents saying? What are they not saying? To help parents accept technology, we need to help the parents accept the hearing loss What is the professional s view of the hearing loss? Do we believe this is a tragedy? Are we full of hope? If we are not full of hope we cannot help the parent s be full of hope If we are not opfmisfc, we should not be doing this work! The Steps Helping Families Build Hope Helping families deal with grief Something has happened that was not planned This is not the perfect baby they anfcipated We need to give parents the opportunity to express grief BUT it CANNOT interfere with moving on Help families understand what is possible for children with hearing loss today!!! LISTEN Placing technology in the right framework What is your goal for your child? Listening and spoken language is possible for children with hearing loss. Helping parents understand the steps to aoaining their goals for their child

9 Why Is Technology Important? Some Specifics How do you access the environment? How do you learn spoken language? How is the auditory brain developed? Technology is a BRAIN ACCESS TOOL Technology is a COMMUNICATION ACCESS TOOL Speech, language, reading There is no other way for the child to develop listening and spoken language Technology is not frightening to today s parents. Computers, phones etc That is not the real issue Listen to what they are saying. Give them a chance to express their fears Give sympathy Talk about the importance of Fme Support Making The Technology Work Meet other parents with kids a liole older Talk to some older successful kids Get involved in therapy quickly Talk about the desired outcome Talk about what is needed to get there Again, and again, and again Experiencing success helps Seeing responses from the baby Give parents the job of observing babies responses to sound Size is NOT the issue Good auditory access is the issue Don t under-fit If the baby does not respond to the technology, parents can t believe in it It will not provide enough informafon to develop an auditory brain Make sure it is loud enough TEST to see responses!!!

10 Keeping Technology On Keeping them on the ears Pilot cap bonnets Huggies EarGear Crioer clips keep them from geqng lost but don t keep them on the ear Technology Is A Miracle We know it works We know it can provide brain access And develop the auditory brain We need to help parents to believe If they believe, they can do the work that needs to be done SituaFonal variables to retenfon Playing and reading to baby The car Maybe someone needs to be siqng in the back seat with baby? Making Technology Decisions MAKING TECHNOLOGY DECISIONS Are hearing aids providing enough benefit? How do you know? Are they hearing in the speech string bean? Discussing moving on to a cochlear implant What are realisfc goals? What will the child hear with a CI that she is not hearing with hearing aids? Will listening be easier? Now vs later Auditory brain development MeeFng other families

11 What Is The Issue? HELPING CHILDREN ACCEPT AND USE TECHNOLOGY 41 Children with hearing loss are now educated in mainstream seqngs Advantages of mainstream educafon Normal language models Normal developmental, academic and social expectafons Beoer opportunifes as adults Disadvantages They do not have significant contact with other children with hearing loss May have more limited social opportunifes 42 Social Skills Counseling Children Social skills are dependent on language skills. Children socialize well with other children as long as they have the language to communicate well As children get older and more aware of hearing loss and the fact that they are different they begin to resist things that can help FM, Therapy, advocafng for themselves Children with disabilifes may experience bullying What can we do to help our children deal with bullying? 43 We counseled parents at diagnosis When do we start counseling children? First showing grief about HL at 8-9 years We need to address grief in children What do we need to talk to children about? Give them permission to grieve Understanding hearing loss Benefit achieved from technology Feelings about hearing loss Social issues related to hearing loss Self advocacy It s okay to ask for help 44 11

12 How Do We Counsel Kids? Discuss test results at the Fme of the evaluafon Describe what the hearing loss means Discuss how this effects listening every day How does technology help Be careful not to provide too much informafon Judge what the child wants to know Tell me what you want to know about your hearing loss Answer kids quesfons When will I be old enough not to need hearing aids? Will it go away? Will it get worse? What will happen if I don t wear hearing aids? Respect a child s wish not to discuss anything 45 Support Groups for Kids With today s technology, most children are educated in mainstream seqngs. They may not have contact with other children with hearing loss Organize support groups for children with hearing loss Gives them the opportunity to have peers who have the same experiences Gives them someone else who understands Gives them the opportunity to say what they feel Don t have to worry about upseqng parents etc 46 Support Groups for Kids Group by age and communicafon mode Don t worry about degree of HL Geqng started Tell me something funny about having a hearing loss Name 10 things friends and family know about you? Is there anything good about having a hearing loss? What are the problems about having a hearing loss? What can we do to improve this problem Group suggesfons about solving individual problems Social issues Bullying, teasing Follow-up 47 Counseling Issues with Children Denying the hearing loss Fear of parent response Concern about expense of geqng hearing aids Fear of ridicule from siblings or other children Refusal to wear hearing aids, RM s With young children, ojen related to the aqtudes of parents With older children, ojen related to aqtudes of peers Talk with parents about their concerns about their child wearing hearing aids. Provide support and sympathy What is the effect of your child not wearing a hearing aid? How will that effect his speech, language and learning? What is your goal for your child? Where do you want him to be when he is 5, 10, 20 years old? Interference from grandparents, siblings etc

Helping Families Accept Technology 20 October 2017 Helping Children Talk About Problems Listening Do you only hear part of what is said some>mes? Encourage the parents to share their concerns.

13 Helping Families Accept Technology 20 October 2017 Helping Children Talk About Problems Listening Do you only hear part of what is said some>mes? Encourage the parents to share their concerns. What have they observed? What behavior under what condi>ons? Have child present to hear we will see what we can do to make it beger. 49 At normal conversafon (50 dbhl) At soj conversafon (35 dbhl) In compefng noise (babble) at +5 or 0 SNR) These speech percepfon results will more clearly illustrate the hearing problem to the parents and child than the pure tone tesfng. Talk about how this makes you feel Discuss that everyone has problems hearing somefmes. Let s discuss where you have trouble hearing and Test speech percepfon in the loud speaker with and without technology Ask the child about his/her concerns: Helping Older Children Understand Hearing Loss I know this is diﬃcult. I am sorry you have to do this. Let the child express frustration 50 IDA InsFtute idainsftute.com MY WORLD Keeping the Door Open Ac>vely indicate child was heard and understood: Listening is not passive! Environments Home, School, Outside Movable ﬁgures and objects Goal Minimal Encouragers Paraphrase Externalize HL and talk about communicafon issues Can also discuss socializafon issues Check your understanding Show that you heard Acknowledge feelings

14 Case Example: 10 year old boy tells school he lej HAs at home; tells family he lej them at school How do we manage this situafon How do we find out which is correct? Why is the child doing this? What can we do to change the behavior? FAMILY SUPPORT Talk to the child You must really be upset about wearing hearing aids It must be difficult in school Do hearing aids help? When do they help? Parent Support Parent Support Groups Other parents can provide support we cannot provide They have been through it Ask if they would like a parent to contact them or if they would like to call another parent Select parents who have kids couple of years older so their memories are fresh but they have gooen a liole ahead Some parents will want to meet older kids and young adults Remember that technology is different now and auditory access will be easier now than it was when these kids were liole 55 Advantages CommunicaFng with people who have been through the same experience Audiologist and physician have not had the experience personally Types of groups Topic based How to maximize your child s speech and language TransiFoning to school Newly diagnosed parent groups Mother s group Father s group Grandparent s group Siblings group 56 14

15 Scheduling Parent Groups SupporFng Siblings During therapy Evenings Ajernoons Weekends Occasional vs monthly vs weekly It is not easy to have a sibling with a disability Can I complain about my broken finger when I have a brother who is deaf? Why do my parents have to spend so much >me with her and not with me? Help parents understand the issues for siblings. Help them recognize the need to plan Fme with the siblings alone Give them permission to complain Consider support for siblings Support for Grandparents Grandparents are dealing with their grief and trying to support parents. Tendency to minimize the disability Tendency to take over Grandparents need to be educated about hearing loss Invite them to appointments Give them responsibilifes It may be difficult for their children to tell them what to do Support groups for grandparents 59 Summary At all stages it is essenfal that professionals empower parents and kids and help them process the emofons associated with hearing loss. Involve parents as co-diagnosfcians for children of all ages. Encourage parents to idenffy their goals for their child and present them with informafon about all opfons. Help parents understand the effects of hearing loss Counseling is important for kids TesFng at soj speech and in noise is crifcal for older children and teenagers so they understand what they are missing Provide fact-based informafon about the life-long impact of hearing loss. Give everyone the chance to express feelings. Remember extended family Be opfmisfc 60 15

16 Helping Families Accept Technology 20 October 2017 THANKS FOR LISTENING Thieme Medical Publishers, Inc. Order toll-free: Fax:

HELPING FAMILIES ACCEPT TECHNOLOGY

HELPING FAMILIES ACCEPT TECHNOLOGY EDHI Conference 4/13/14 Jane R. Madell, PHD CCC A/SLP, LSLS Cert AVT Pediatric Audiology Consulting Jane@JaneMadell.com Why is it Important for Parents to Accept Technology?