Monthly Archives: February 2015

Listen to me now: A letter from the future

Mikaeel Valli

Dear Mom and Dad,

You are probably both wondering who this person is who is writing to you. It’s me, your son, Mikaeel writing this letter from the future as a 21 year old, but for now, you both know me as your young four year old, being raised beside my bustling older brother, Talib. Raising two young boys and balancing your work demands has, without a doubt, been keeping you both very busy. Raising us to adults as we are today, you both deserve a lot of credit for your hard work. Trust me, it will be worth it, though admittedly, we will have driven you nuts and given you splitting headaches many, many times.

I can only imagine how hard it was for you to learn that I have a severe to profound hearing loss. A deafening echo of ‘deaf’ must still be going through your minds and it has no doubt left you wondering what the future holds for me. Will I ever listen and communicate like any normalchild — especially like Talib? Even deeper echos running through your minds will probably be whether you will ever be able to communicate your thoughts to me or even for me to communicate my thoughts to you. The truth is, it will all happen! Rest assured that though it will be difficult in the beginning as you are now experiencing, over time I will gradually improve with my communication and listening skills to a point that these fears you are having will become non-existent.

As with many parents both of your minds must be racing as to what I  feel being that I am hard of hearing (HOH), especially once I reach an age of understanding. The reality is that I never felt any resentment over being HOH. I feel life is too short to dwell on things that cannot be changed. I believe we need to progress forward, focusing on the blessings we have, always being positive, no matter what. Rest assured that the cochlear implant has opened a tremendous floodgate of opportunities for me to such an extent that I don’t feel HOH (when wearing the cochlear implant, of course!). My listening and articulation capabilities are, at this point, very similar to individuals with typical hearing in many listening situations.

Currently, all you see is “little Mikaeel” being so quiet, and generally having a difficult time grasping the ability to learn to talk. You and your therapist wonder if I’ll ever talk myself out of my shell of shyness. Therapists and teachers have expressed concern and wonder if they are doing everything they can to help me. Both of you are convinced, however, that I just need more time. I want to assure you that you are absolutely right! There is a great misconception that upon cochlear implantation, recipients will automatically have the ability to hear and speak, but clearly you both understand that that’s not exactly accurate. It not only takes appropriate hearing technology and intervention, but time.  Along with the professionals, you have all done a tremendous job! Now, it’s time to wait for me to continue to learn, grow and express myself.

A young Mikaeel in an auditory-verbal therapy session with his auditory-verbal therapist

A young Mikaeel in an auditory-verbal therapy session with his auditory-verbal therapist

Dad, your determination to consistently take me to Auditory Verbal Therapy (AVT) sessions every Wednesday morning along with the time Mom takes to watch each of the taped AVT sessions along with your combined determination to enforce the lessons taught during those sessions will prove to be the recipe for my success. I certainly feel that, beside the decision for a cochlear implant, enrolling in AVT (and you both taking it seriously) are the best decisions that you both made. Without a shadow of doubt, I would never have achieved my current level of articulation and listening skills with it. The determination, love and work ethic you both possess is unmatched.

There is an expression that says, “No pressure. No diamond.” You both are placing a good amount of pressure on creating the conditions that will lead to the polishing of me — your diamond. Your tenacity of continual pressure for your children to attain their highest possibilities; having high expectations, will have diamonds descending onto your laps — guaranteed.

Continue going with the flow, even when the going gets tough. Many doors of opportunities will open up along the way for both Talib and I. These doors, however, will open when you least expect it. Talib will become a very confident young adult who will eventually meet a wonderful wife who brings a vibrant perspective to our family. He will earn great success in his career. I will mature quickly and, admittedly, I am very surprised at myself for this when I look back! You have encouraged me to focus and this has led me to pursue and develop my career from a relatively young age.

Mom and Dad, always continue to work together as team of two in supporting each other, sharing comforting and reassuring thoughts with each other and always continue to ensure there is a line of communication between the two of you as well as with your children. Continue to strive to integrate your boys together and treat your journey with Mikaeel as a holistic package involving everyone in the family. One possible way is to incorporate Mikaeel into Talib’s activities and vice versa as much as possible. Consider bringing Talib along to a few of my AVT sessions. I bet Talib would find it a lot of fun to play with the abundance of colourful toys in the therapist’s room. It would certainly make Talib feel part of this journey to a greater level and would encourage me to mimic Talib, using him as my model. You could do the reinforcement of AVT lessons at home together with the two siblings as well. This will give prime opportunity in re-enforcing your conviction that everyone has a valuable role to play within the home and that everyone needs to feel included.

I know you both are very determined that Talib and I achieve an education and you are probably wondering how we both will do in school. Talib will become a proficient academic performer especially in high school where he will earn honor rolls throughout the four years. As for me, it will take time for me to gradually catch on, adjust to different listening situations and to effectively understand and communicate language properly in the earlier years of elementary mainstream school. But don’t worry. I will catch on, especially when I reach mainstream high school where I also will achieve honor rolls in all four years. I speculate that my continual exposure to children with typical hearing in my age group in mainstream elementary school was the driving force pushing me toward success. I believe that being assimilated has led to my ability to communicate effectively.

As I have already spilled the beans on your children’s school accomplishments, you are probably on the edge of your chair wondering what happens next after high school for both of us. Well, I have to say that patience is a virtue and that you will have to wait until prime time in about ten plus years! I just would like to let you know that as an adult, life is very positive and I am very happy just the way it is. This is thanks to the lessons and mindset that you instilled in us right from the very beginning. Your dedication has brought forth rewards that I think will surpass your wildest dreams.

You both are still probably wondering who I am and how I can say such decisive things. The reality is, once again, I am speaking from the future and you will be with this person through to the future and much further. I need to let you know that, along with the excellent family support received especially from your sister (in-law), Zainab and her family, you are both doing a fantastic job! All of you ought to be very proud of your accomplishments for molding Talib and I into our full potential in being happy and healthy.

Warmest regards from your old (and more behaved) son,

Mikaeel

As an adult, whenever possible, Mikaeel enjoys spending time with Warren Estabrooks and Karen MacIver-Lux

As an adult, whenever possible, Mikaeel enjoys spending time with Warren Estabrooks and Karen MacIver-Lux

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We appreciate your interest in this blog post. The text contained in it is copyrighted by SoundIntuition as of the date of publishing. Contact us by leaving a comment on this post if you would like to use this text elsewhere. When used, we would ask that you cite this page, using the full URL (http://soundintuition.com/blog/what-hearing-loss), as being the originator of the content.

 

 

 

Do You T.H.I.N.K When Providing Intervention?

Karen MacIver-Lux

Auditory-verbal therapists spend a lot of time coaching, providing feedback and engaging in collaborative discussions with parents. Speech-language pathologists, audiologists, teachers and other early intervention professionals (professionals) are no exception. Effective communication is recognized as a priority across the health care continuum because it directly affects the quality of patient care, safety, medi-care outcomes and patient satisfaction (1995).

Occasionally, professionals may need to deliver news or feedback that can difficult for a parent/child (client) to hear. Some professionals dread having these conversations because, despite their best intentions, the information gets lost in translation and clients can end up feeling unnecessarily frustrated, discouraged or even angry. As a result, rather than putting into action a plan for care, valuable time can be spent recovering from the shock of the news.

In her book The Now Impact, Elisha Goldstein describes the T.H.I.N.K. strategy, which can be used when preparing to provide feedback or information so that the message is clear and concise. This strategy can also be used when communicating and engaging with young clients, particularly during behavior management.

Before engaging and communicating with clients, it is a good idea to T.H.I.N.K. by asking ourselves if what we’re about to do or say is:

True

When discussing treatment plans/options, try to ensure that the information shared is accurate and current. When sharing observations, try to accurately describe what was observed, remembering to include multiple examples/evidence. When the answer is unknown or unclear, say so. Then work together with the client to find the answers. If the client requests additional information about a topic or intervention approach we’re not familiar with, refer them to the appropriate source(s) or professional(s).

During my years working with children, I’ve learned to say what I mean and mean what I say. Body language and follow-through are as equally important as the message.  If I say I’m going to do something, I need to do it.  When working with clients, I need to walk the talk, truthfully.

Many years ago, I saw Jack (not his real name), an adorable three year-old boy who noticed every delicate décor accessory in the clinic. Jack would have these in his hands before his mother or I can move them out of reach.  One day, he looked at a flower vase, and reached out to touch it.  I smiled cheerily and said in the nicest voice I could muster, “No, no, Jack. Don’t touch the vase! If you touch it, it will break!” Well, guess what? Jack touched the vase and it didn’t break. My voice and body language did not match the message and the verbal consequences I presented didn’t make sense. Nor was it the truth.

The next time Jack walked by the vase, he reached out to touch it and looked back at me. This time, I didn’t smile and I used a quiet but firm voice and said, “No, Jack. Don’t touch the vase. If you touch the vase, I won’t be happy and there will be no bubbles.” He touched the vase, so we didn’t play with the bubbles during our session.

The next time Jack walked by the flower vase, he didn’t touch it and as a result the beloved bubbles stayed in our session plan. My body language matched the clear boundaries I set and the consequences were realistic and truthful.

Helpful

As professionals, we are accustomed to providing recommendations and suggestions and we expect the children and their parents to follow them. At times, however, due to a family’s circumstances, the recommendations may be easier said than done.

Consider the following case of a family whose baby, Molly, was fitted behind-the-ear hearing aids one month prior. During their follow-up visit with the audiologist, the parents reported that Molly had adjusted well to the hearing aids and is wearing then during all waking hours. Upon reviewing the data logging, however, the audiologist noticed a discrepancy that suggested that the hearing aids were only being used four hours a day.

Although tempted to question the parents about the discrepancy, the audiologist refrained. Instead he said, “I see that your baby is getting an average of four hours a day of hearing aid use.  This is a great start!  Our goal is to have the hearing aids on during all waking hours. How do you think we can achieve this goal with Molly? Is there anything I can do to help?” The parents showed surprise and responded that they are certain that the hearing aids are being used at all times except during rides in the car, bath time and sleep .

After the audiologist waited for a few minutes allowing time for self reflection, the parents suggested the possibility of the hearing aids not being used while Molly was at daycare. Later that evening, the parents discovered that the daycare staff were uncomfortable handling the hearing aids and were fearful of losing or breaking them. In addition, the other children were pulling Molly’s hearing aids off and placing them in their mouth. As a result, fearful for all the children’s safety, the staff weren’t always diligent in putting the hearing aids back on.

With this information at hand, the audiologist and the parents developed a plan of action to help ensure that the hearing aids would be worn during the baby’s entire time at daycare (e.g. a pilot cap and an in-service for the staff on the handling and care of the Molly’s hearing aids). Adopting a helpful attitude and supportive language is what often sets the stage for progress.

Inspiring

When I was 13 years of age, I decided that I wanted to become an audiologist.  It did cross my mind, however, that given the severity of my hearing loss the job may be difficult to do. How would I be able to do listening checks on a hearing aid? Was my speech good enough to do speech discriminations tests?

The list of questions grew longer and my dream drifted further and further away until I met Jeff Float.

As team captain in the men’s 4×200-meter freestyle relay, Jeff Float was the first legally deaf athlete from the United States to win an Olympic gold medal. Impressed by his story and example, I realized that if he could start a relay race, then so could I.

Meeting Jeff Float gave me the inspiration to pursue my dreams with dogged determination.

When parents are faced with their child’s diagnosis of a communication challenge, they are usually uncertain of what the future holds. In all honesty, so are the professionals.  Professionals however, have the advantage of having the skill set and knowledge to develop an intervention plan to help the child reach his/her highest communication potential. It’s important for  professionals to remember that parents not only need a plan of action, but that they need some inspiration as well. The same goes for young children, teenagers and adults with communication disorders.

  1. Arrange appointments so that clients have the opportunity to meet other others with similar communication challenges. Partner “new parents” with parents who have been through the process.
  2. Present opportunities for children with communication challenges (e.g. hearing loss, dysfluencies, cerebral palsy, auditory neuropathy spectrum disorder, etc.) to meet adults with similar communication challenges.
  3. Encourage children and young teenagers to join peer support groups of similar communication challenges (e.g. LOFTHitIt, etc.).
  4. Use language that is respectful of other professionals and communities who have embraced alternative communication approaches.

A good dose of inspiration goes a long way for those who have communication challenges and paves the way for the achievement of dreams and beyond. Encourage clients to aspire by introducing them to those who inspire.

THINK

Necessary

When my mother found out about my hearing loss when I was four years old, the doctor firmly told her that I would never hear or be able to speak.  He also added that I would never go beyond grade three, and that I would be severely limited in my vocational choices. He explained that it was necessary for my mother to adjust her expectations of me because of my mild to profound hearing loss. He then left the room to attend to another patient. Did my mother adjust her expectations? No, but she did feel devastated by his words and it took her some time to recover and move forward to find out what I really was capable of.  She later discovered that the doctor not only provided inaccurate information at the time (e.g. I could hear her voice even without hearing aids because I have a mild to profound hearing loss) but I also achieved outcomes beyond his expectations. To this day, my mother remembers his words and is still angered by them. Unfortunately, similar interactions still occur today unnecessarily causing parents grief and aggravation.

Each case is unique and professionals need to gauge the type and amount of information to provide. It is best to avoid making predictions about outcomes. Instead, listen to the parents’ dreams and desired outcomes for their children. Professionals should provide research data on outcomes and variables that can be controlled (e.g. hearing technology). Parents should be directed to resources so that they can do their own research. When parents’ dreams for their children have been heard and understood by professionals, parents will be more open to developing a plan of action in a collaborative fashion and following it.

Be mindful of when and how we share information.  Is it necessary to call a parent on a Friday afternoon to recommend a cochlear implant candidacy investigation when your next appointment with them is on Monday? Is it necessary to tell a parent of a one year old child to work on producing “s’ in words?  Is it necessary to provide parents of a newly diagnosed infant with a thick binder of information on hearing loss?  Is it necessary to tell a child that he’s a good boy when he hears a clock ticking?

When we take the time to consider the necessity of the information we provide to parents and children, chances are they will be more open to listening and moving forward with a plan of action.

Kind

Kindness is not just about being polite or generous; it’s also about having and demonstrating empathy.

Unfortunately in today’s world, kindness and empathy are sometimes regarded as signs of weakness. Often, the perception is that kind and empathetic professionals are either too timid to be effective or that they rely on their “niceness” in place of knowledge and the ability to effectively treat or impact clinical outcomes. Additionally, there seems to be a fear among some in the “helping” profession that empathy will lead to “burn out” early in their careers, and they develop a persona of polite indifference to protect their mental health and livelihood.

Clients who engage with professionals who behave with indifference, understandably, lose trust in the professional and their treatment plan, and progress for positive change is disrupted or grinds to a halt (2014).

Kindness and empathy is demonstrated by adopting body language that clearly shows that the professional is truly listening and by providing feedback the professional confirms that the client/patient was heard and understood.

It’s important for the professional to remember, that they need to move quickly from empathy toward developing a plan of action in collaboration with the client/patient.  Such collaboration will lead to the client/patient acquiring greater knowledge, trust, and motivation during the intervention process.

Remember Molly’s audiologist?  Her parents were given the opportunity to take the time to think about why her hearing aids were not being used as often as they thought. How?  Making sure to keep his arms uncrossed and open, leaning forward and providing good eye contact, making sure that his legs are uncrossed as the audiologist waits and allows the parents to self-reflect. Adopting such body language conveys that he is open to hearing whatever they have to say and that he’s open to being helpful.

When planning your next session, celebrate your professional strengths and challenges and T.H.I.N.K. before doing and saying. When we T.H.I.N.K., communication and collaboration will lead to better understanding, collaboration, client satisfaction and outcomes.

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We appreciate your interest in this blog post. The text contained in it is copyrighted by SoundIntuition as of the date of publishing. Contact us by leaving a comment on this post if you would like to use this text elsewhere. When used, we would ask that you cite this page, using the full URL (http://soundintuition.com/blog/do-you-THINK-when-providing-intervention), as being the originator of the content.

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References

Stewart, M. (1995) Effective physician patient communication and health outcomes: a review. Canadian Medical Association Journal. 1995;152(9):1423n1433. 261
Back, A.L. & Arnold, R.M. (2014). “Yes It’s Sad, But What Should I Do?”: Moving from Empathy to Action in Discussing Goals of Care. Journal of Palliative Medicine 17(2):141-4.