sound practice in action
I often wonder if the professionals that work with our children really know the impact they have on our lives.
I have two boys with bilateral cochlear implants. Within the cochlear implant world, I have been so fortunate to work with therapists, audiologists, social workers and doctors that have treated my children like their own. All these professionals played a role in guiding my husband and me on the journey of helping our boys with hearing loss to hear, listen and talk.
The skills taught to me by the professionals who worked with us have become invaluable and will be with me for life. The team all made their appointments fun and through them I learned how to help my sons without it seeming like I was doing “work” I think of them often and their words and methods are close by when I need them.
A few examples come to mind:
Recently, one of my sons asked me what it meant to ‘not be able to hit the broad side of the barn’. I knew what to say and do to help him understand the idiom without it seeming like a lesson. The boy’s Auditory-verbal therapist and Teachers of the Deaf/Hard of Hearing have provided me with those tools to help my boys improve their speech clarity or language without them feeling like they’ve made a mistake.
Their audiologist made MAPping sessions enjoyable. She helped them to realize that they are key partners in the cochlear implant adjustment process by asking them questions about their hearing abilities and needs. asking for feedback during MAPping sessions, and involving them in any decisions regarding management or recommendations. Now, the boys, themselves, will suggest when they think they need to see the audiologist and can effectively advocate for their hearing needs.
They couldn’t wait to see their ENT as they looked forward to his magic tricks.
A trip to their social worker was a great opportunity for them to talk about themselves, reflect upon and feel proud of their accomplishments.
Occupational and Physiotherapists made their exercises fun and helped them develop a love of physical training so that they look forward to it and have made it a part of their daily lives.
Every member of our “professional family” was more than someone who worked with my children once a week. I know they will always be there if and when I need them.
I am blessed to have found a group of professionals that have become a part of our family. This does not happen automatically. There were many things we had to consider when we were looking for the “right” professionals. Along with wanting the best , we needed to customize the team to meet the needs of our family. It was important to me that the boys enjoyed their various therapy sessions and looked forward to going rather than feeling like it was work and having them resent that time. I couldn’t do it alone. I knew that my expectations and my approach would influence the relationship my kids had with their many therapists.
About a year ago, my husband and I had to make a decision whether or not to move our family away from all that is familiar and comforting. It was almost unthinkable and our decision to leave was incredibly difficult for many reasons. We would be leaving our professional family, our friends, and our own extended family members who had been a huge part of our family’s journey.
Recently, in our new home, I had a moment that made me realize that the professionals will always be a part of our lives because they were instrumental in who my children have become and who they will be in the future.
My oldest son had an assignment for his Language Arts class that required him to read the poem “Still Here” by Langston Hughes. After he read it, he was asked to think of a time when he was faced with a challenge and choose a line from the poem that would relate to that moment.
First, he said to me, “But Mama, I can’t think of a moment when I was faced with a challenge.”
Well, I was blown away.
You see, both he and his brother have Usher Syndrome Type 1. Along with being born deaf, he has problems with balance and he is losing his vision. To think of all the years of therapy and the challenges he has faced in his young life, I couldn’t believe he couldn’t come up with one challenge to write about.
At that moment, however, I felt so profoundly grateful for all the people who had helped him face his challenges along the way. My son loved visiting his auditory-verbal therapist, occupational therapist and physiotherapist, the hearing health professionals of the Cochlear Implant Program, and the vision health professionals of the Department of Ophthalmology and Vision Sciences. He never really thought that these appointments were a hardship in his life; he enjoyed them immensely. Those people projected the attitude that anything was possible for my sons. That attitude was infectious and my sons caught the bug.
So, next I had to convince him that he indeed, had faced challenges and I talked to him about his cochlear implant surgeries, the MAPping appointments, the therapies to address his skills in balance, listening and spoken language, and finally the appointments for his eyes and vision.
“But Mama, I don’t take them as challenges,” he responded.
So then I explained to him that other people would think they were challenges so he could talk about any of those for his assignment. He seemed relieved that he would have something to write about but was still a little perplexed about how to begin.
He then had to find a line in the poem that would relate to him. I read the poem to him and he chose the line, “But I don’t care!” because he thought it best reflected how he felt about his challenges.
Then he was ready to do his assignment. It was the end of the day and he was fatigued, even though he has many accommodations provided at school.
Here is his assignment entitled, But I don’t care!
Life has given me a lot of challenges. Some I was too young to remember, but I don’t care. I have always needed to use an FM System since I can remember. My eyes started to affect the way I worked in school when I was in grade 4. I have a lot of things that make me different, but I don’t care. I have always been thought of differently than normal people, but I don’t care. I have a lot of challenges that I will face in the future, but I don’t care. I choose to live my life the way I want it to be. I will always work hard to do the things that I want to do. The only thing that will ever really stop me is my disability, but those are for reasonable reasons like safety. But, I don’t care. I will find other things to do.”
As I read this I thought of everyone who had been a part of his life and how everyone has contributed to this view he has of himself. These people have been an important part of my family from the time my children were born.
The professional members of my family were all invested in the process of helping me and my husband nurture our boys into brave, strong, confident children, who would overcome all the challenges they face, with dignity and determination.
Many people have asked how we have adjusted to our move and I think my son’s assignment answers this question beautifully.
I was so worried that he would have difficulty being around new people who hadn’t grown up with him and been used to his differences.
I am not worried anymore. He is not worried and he will figure it out as he goes along.
This is what I want everyone who has ever worked with him to know. This is the child they helped me raise. There are still many years to go but he has an incredible foundation to build on.
‘Thank you’ just does not seem like enough.
My Top Ten Tips for Parents:
1. Determine desired outcomes for your child and choose the intervention approach and professionals who will help your family achieve them.
2. Clearly state the family’s goals and expectations to every professional involved, so everyone is on the same page. At the same time, be open to new ideas.
3. When visiting a clinic, walk its halls, saying hi to everyone on each visit, not just the professional being seen that day.
4. Turn appointments into an adventure and plan something fun to do that day after the appointment, especially if you are traveling. If an appointment that is close by, get a special treat afterwards.
5. Give respect if you want respect back. Be timely and polite, not demanding. Also, be personal and ask about family. Encourage your child to do the same.
6. Inform professionals of the extra-curricular activities in which your child is involved enabling them to develop an intervention plan that can be incorporated into those sports/activities. Professionals may also chose to use extra-curricular themes in their therapy plans.
7. Include and involve school professionals in the intervention process by sharing goals and expectations.
8. Share important events/successes/accomplishments with each member of the intervention team, helping the professionals get to know your child.
9. Help your child develop self-advocacy skills by having professionals direct questions to the child from an early age. Make the children the focal point of appointments – after all, he/she know themselves best. Also involve your child in his/her ‘Identification, Placement & Review Committee’ (IPRC) meetings. This will help your child gain confidence and greater understanding of his/her strengths and needs.
10. Become involved in professional training, advocacy and fundraising organizations focused on your child’s needs. This will further develop the child’s and family’s self-advocacy skills.
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KAREN MACIVER LUX