WEBVTT

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Good afternoon and welcome everyone.

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My name is Mandy Jay, and on behalf of the early hearing

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detection and national technical resource Center, or the NTRC, I

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would like to welcome you to this webinar.

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Assuming Competence: What to do when you don't know what to do.

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Presented by Michelle John.

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Before we get started I have a few logistical items to run through for

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you.

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You should know that this webinar is being recorded and will be

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posted on infant hearing.org in the next couple of days.

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If anything disrupts your full participation today, please know

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you can access our website and you can also share this webinar with

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others who will benefit from the content.

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Also, if you would benefit from captioning today, please click on

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Live Transcripts, or Choke Options -- Show Captions.

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You can enlarge the size to however you would like to view

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them.

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You will notice there is a vertical bar between the PowerPoint slide

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and where the video windows of our interpreters and presenters are.

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You can resize these fields for your viewing purposes.

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Thank you to our captioner and interpreters today and we

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appreciate your time and skills to bring accessibility to everyone

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participating in the webinar today.

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So, thank you to them.

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OK.

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A couple of other things.

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After our presenter has completed her presentation, we will open up a

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Q and A box where you can type your questions for her to respond to.

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We will not be monitoring questions during the presentations

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and we ask that you hold off until we open that box.

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Jot down any questions that you have so you do not forget them by

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the end.

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At the end of the webinar we will be posting a link in the chat box

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that will take you to a short evaluation of the webinar and will

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also produce a certificate of attendance if that is helpful for

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you.

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Be sure to do that before you sign off today.

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So, with that said, I want to introduce Michelle John, are

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presented for today.

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I will read a bit of her bio but I don't want to interrupt her

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presentation time or take too much presentation time away from her

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because I have heard her present before and we want to maximize her

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time.

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Michelle holds a dual bachelor of arts degree in psychology and

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sociology and a Masters of science degree in community Council in

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specialization from Springfield College.

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She also enters certification as an end-of-life tule through the

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University of Vermont.

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Currently, she is in the final portfolio stage of becoming a

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certified deaf blind intervener and is also newborn screening

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ambassador and works closely with the National Center on deaf

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blindness and is the governor appointed member of the Vermont

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developmental disability Council.

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While spending many of her adult years pursuing higher education and

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proud of these accomplishments, she is just as quick to share that her

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life curves in a divergent direction.

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She educates her three children by being a stay-at-home parent.

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She is all things medical, educational, and physical care to

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her nine-year-old Deaf Blind child who has significant medical

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complexities and is a willing teacher to those with questions.

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Most often, her two other children.

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With that, I will turn this over to Michelle and I will be back on with

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questions at the end for -- of her presentation.

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Shall, thank you.

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MICHELLE

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JOHN:  Thank you so much.

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I'm embarrassed about but thank you!

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(Laughs) Good afternoon from snowy Vermont.

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We had our first snowstorm today so that is exciting and I thank you

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for joining me.

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This presentation, I like to give a warning that the session might

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cause tears or changes in your Outlook and how you interact with

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your child or child you work with and possibly even your organization

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as a whole.

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This is a representation about a child that I love and adore, but

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some of this child's history will be given which can be emotional or

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blunt.

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Due to time constraints I feel that honest facts are the best

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policy for you to get the most out of this session.

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Do not fear, it will not be doom and gloom but to have facts it is

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critically important for you to understand how practitioners,

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service providers, and even family members can be influenced by what

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is often considered the standard.

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This considered -- this can limit a child's progress.

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Some of what I share might range from joy to sadness and this

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program is unrated – though approved and I certainly hope that

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this will be a great session.

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Let us see if I can move to the next slide.

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There we are!

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So, assuming competence.

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We will watch the next slide and there will be a few video clips.

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I want to acknowledge that sometimes it is easy to assume a

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child does not have a particular set of skills and act accordingly.

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Noticing and naming these feelings that come up within us can help us

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take action to improve our connection, skills and level of

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professionalism.

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So please notice what notions -- emotions you may have while you

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watch these videos.

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(Video plays)

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(Video plays)

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SPEAKER:  It's mama!

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Yes.

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Mama.

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Good job, mama!

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I think she wants to borrow your toy.

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Nice job sharing bud.

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What, honey?

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You did?

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Nice job talking!

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Yeah!

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(Video plays)

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SPEAKER:  Hi Tyson!

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Is mama taking videos of Tyson?

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Yeah, you see something over there.

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Who did you see?

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Is it your sister?

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Or your brother?

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Oh, you hear your brother, Lane?

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Yes!

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He's over there!

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That is right.

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Yeah, you want to see!

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What are they doing?

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Do you want to go and look?

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Yes.

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I want to look!

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Good job, bud.

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We will go see your brother now, OK?

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MICHELLE

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MICHELLE

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JOHN:  So, think about the emotions you had while you watched the

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videos.

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Perhaps you feel happy, connected, confused or overwhelmed.

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You may have had other feelings and feel free to investigate those

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as well.

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So, who is that child from the

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clip?

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It is Tyson.

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A DeafBlind plus child.

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He was expected to die immediately, the EEG showed minimal to no brain

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activity but for seizures, the ventilator showed no voluntary

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breath.

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Surprise!

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He lived but he was a 'vegetable' with no awareness.

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He was brought home at six weeks old to die.

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Some diagnoses, but cerebral palsy, hypoxics encephalopathy which is a

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brain injury.

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Spastic quadriplegia, epilepsy, cortical visual impairment,

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bilateral sensorineural -- sensorineural hearing loss and

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failure to thrive.

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Some of the technology needed to keep casing – Mike Tyson going

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includes BiPAP ventilation, suction, feeding to and pump, a hospital

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bed and oximeter.

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He has had multiple hospitalizations and a short life

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expectancy.

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To share a brief history of how this happened, I will only be

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giving some of the many diagnoses and technology even to keep them

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going.

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There is so much more to discuss and we don't want to spend our time

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talking medical jive.

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After being told Tyson had no brain damage with all four quadrants

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including the brainstem, he was told he had no awareness of who he,

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we, or anyone was or where anyone was or – anything.

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He was in a vegetative state and his brain function was being used

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solely to breathe, sometimes even forgetting to do that.

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And his heart function.

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Only basic life-sustaining measures, which were involuntary.

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No other function was available.

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Due to the significant brain damage he would soon 'forget' to

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breathe and keep his heart going and any second now, he would die.

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Wait for, any second now… Any second.

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Any minute now.

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This could be it.

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First, it was to be over a day of life, then not live more than one

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month, two months, three, then six.

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He will not live a year, he will not see age 2.

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After turning three they stop telling us what age he would

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survive to.

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I would wish and hope for more.

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Those secretly terrified what will Marty would look like.

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Tyson is my firstborn child and I know that that is now PTSD and

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birth trauma, equated a mother whose anxiety was on overdrive 24

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seven for years.

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Unable to sleep and some days barely able to think.

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I was certainly no medical professional.

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How could I possibly know how to take care of this failure to thrive

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baby who could not see, hear, feel or no?

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His eyes would be open at times but he was looking through things,

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never at.

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No sign of recognition, just like they said.

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What do you do with the comatose kid?

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Caretaker was all I could so I did with vigor and gusto.

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I would be the best caretaker there had ever been.

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I would be a personal pediatric intensive care unit.

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I would be the team of professionals it took while

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inpatient, all wrapped up into one person.

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Now, this is all relevant and important information and is

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certainly, the medical history is important to have.

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But is there more?

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Perhaps things equally as important?

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Welcome of the information on the previous slide is critically

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important to understand the history of how a child became who they are,

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let us reflect on the possibility that there is more to said child.

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Let us look at these next two slides together.

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Who was that child from the clip?

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Tyson, a DeafBlind plus child.

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He has a significant medical history with limited life

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expectancy, multiple diagnoses and medical equipment requirements to

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sustain life.

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He is adorable and sweet.

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He enjoys listening to music, itsy-bitsy spider is thought to be

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a favorite.

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He likes feeling toys, going for walks, stores and shopping.

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His parents think they are projecting.

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He loves to be held and snuggled, and needs warmth and comfort.

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His favorite nonhuman cuddling companion is Gina, a huge, old,

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all-white long-haired cat whose preference is to lay on his legs.

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The part of his body that is always cold due to poor

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circulation.

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Ponder for a moment what is here.

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Is it a lot or a little?

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Do you know baby Tyson well?

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Can you convince yourself that you actually know Tyson?

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Does the family?

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And what if this was your child?

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So now let us look at information regarding older Tyson.

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You will medially notice there's a lot there.

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This slide is visually busy but you will also notice a keyword

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shift.

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Who was that child from the clip?

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Tyson.

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My DeafBlind + child.

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He has a significant medical history, limited life expected to,

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multiple diagnoses and medical equipment required to stay in life.

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An amazing sense of humor, love to laugh and smile.

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He loves listening to music, classic rock, Bob Marley, the Bee

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Gees, the Beach boys, Katy Perry, Whitney Houston and unknowingly –

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John Mayer our favorites.

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He enjoys feeling toys, doing for walks, stores and shopping,

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watching the iPad, seeing his classmates, his siblings, looking

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at and listening to stories, Pictello books, all things water,

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his hair being washed, brushed her stroke, snuggles with family,

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siblings, and pets.

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Lava lamps, disco balls, camp!

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Maternal grand parents, going on boat rights, movement, silly voices,

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soft and cozy blanket, being warm, stuffed animals, getting haircuts,

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complement, and picking out clothes that are cool looking.

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What does Tyson hate?

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Poopy diapers, old-school country music, randomly – Jack Johnson's

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music.

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Being cold, being alone, boredom, pain and discomfort, jackets, doing

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school work he does not enjoy, and seeing providers that do not get

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him.

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Prolonged loud noise or chaos, and blood draws.

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00:15:12.480 --> 00:15:15.860
That was a lot that I read.

267
00:15:15.880 --> 00:15:19.860
When you compare baby Tyson told her Tyson, is there a difference in

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00:15:19.880 --> 00:15:20.360
detail?

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00:15:20.380 --> 00:15:22.400
Do you feel you know Tyson better now?

270
00:15:22.420 --> 00:15:26.530
Is he now a more well-rounded person for you?

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00:15:26.550 --> 00:15:31.540
Perhaps an extended – expanded version of baby Tyson?

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00:15:31.560 --> 00:15:34.300
And did you notice that one keyword shift?

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He is not a child that my child!

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Does that change the meeting for you?

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00:15:39.950 --> 00:15:43.930
And how did we get from the first slide of doom and gloom medical

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history to kind of learning about Tyson, to really knowing Tyson.

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00:15:49.940 --> 00:15:53.390


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00:15:53.410 --> 00:15:57.280
Interactions with families, words and behaviours matter.

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00:15:57.300 --> 00:15:59.280
For families of children with significant for multiple diagnoses

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and disabilities they may be overwhelmed, confused or scared.

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00:16:05.060 --> 00:16:09.040
Your words in regards to their abilities and skills, the child's

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00:16:09.060 --> 00:16:13.040
capabilities and your views about them have a much stronger influence

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00:16:13.060 --> 00:16:16.040
than you may realize.

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Am now going to give you a few rapid examples.

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00:16:18.140 --> 00:16:23.120
I will start with the simple one, calling me not by my name but

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00:16:23.140 --> 00:16:24.720
calling me Tyson's mom.

287
00:16:24.740 --> 00:16:26.720
Not all families like this.

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I do not mind it per se but no one has actually asked me.

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00:16:29.680 --> 00:16:34.460
I do not actually go by mom and mom is not a favourite either.

290
00:16:34.480 --> 00:16:38.120
I chose Momma and it is my preference.

291
00:16:38.140 --> 00:16:42.120
I do not love being regulated just to Tyson's mom although I am

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00:16:42.140 --> 00:16:44.550
extremely proud of that burned a title.

293
00:16:44.570 --> 00:16:48.000
However, I am more than just a mom.

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I suggest always asking.

295
00:16:49.620 --> 00:16:51.200
Do not assume people's comfortability with names or

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labels.

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00:16:52.680 --> 00:16:55.870
Now we will go a little bit deeper.

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00:16:55.890 --> 00:16:58.870
During the first two weeks of Tyson's six-week inpatient stay

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00:16:58.890 --> 00:17:01.870
after birth, his neonatologist allowed Tyson to have donated

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00:17:01.890 --> 00:17:07.870
breastmilk as I was pumping like a fiend from birth by producing

301
00:17:07.890 --> 00:17:10.470
nothing.

302
00:17:10.490 --> 00:17:13.070
Breastmilk was literally the only thing I felt I had control over the

303
00:17:13.090 --> 00:17:15.250
time and I cannot even manage to do that correctly.

304
00:17:15.270 --> 00:17:17.740
Breastmilk is best, was the mantra I had always heard.

305
00:17:17.760 --> 00:17:21.970
My body had already killed my kid and now I cannot feed him.

306
00:17:21.990 --> 00:17:23.970
What could I do correctly?

307
00:17:23.990 --> 00:17:28.450
I was utterly defeated standing by to watch my child die.

308
00:17:28.470 --> 00:17:31.450
During rounds on another neonatologist shift I overheard

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00:17:31.470 --> 00:17:34.450
this unknown Doctor, shared to a large medical team including a slew

310
00:17:34.470 --> 00:17:39.450
of residents, he cannot understand why the other doctor was allowing a

311
00:17:39.470 --> 00:17:43.970
dying child to waste the donor breast milk.

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00:17:43.990 --> 00:17:48.970
I was not able to touch or hold Tyson until day of life five for a

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00:17:48.990 --> 00:17:52.970
variety of medical reasons.

314
00:17:52.990 --> 00:17:55.970
On day of life eight Tyson was to be excavated, removing his

315
00:17:55.990 --> 00:17:57.970
life-support to let him go.

316
00:17:57.990 --> 00:18:00.800
I had only had three days to touch him and only a few holdings.

317
00:18:00.820 --> 00:18:04.800
A few minutes prior to excavation I was holding him skin to skin,

318
00:18:04.820 --> 00:18:07.620
chest to chest as I had for every moment I was allowed.

319
00:18:07.640 --> 00:18:11.020
It was a lot of hard work to get him skin to skin but keep the tubes

320
00:18:11.040 --> 00:18:11.760
in.

321
00:18:11.780 --> 00:18:15.760
I knew the hour was upon us, I had read all the books I thought he

322
00:18:15.780 --> 00:18:18.760
should hear, picked the grass and leaves for him to experience the

323
00:18:18.780 --> 00:18:20.360
outside world one time.

324
00:18:20.380 --> 00:18:24.910
We had taken the pictures, one of which you saw in the opening slide.

325
00:18:24.930 --> 00:18:27.870
I was saying my lengthy goodbye.

326
00:18:27.890 --> 00:18:28.440
Squeeze.

327
00:18:28.460 --> 00:18:32.880
Now that cannot be, he was not really squeezing my chest.

328
00:18:32.900 --> 00:18:34.320
Squeeze.

329
00:18:34.340 --> 00:18:37.850
It is just the reflexive action they said.

330
00:18:37.870 --> 00:18:40.850
During my ridiculously drawn up goodbye, I told Tyson we loved him

331
00:18:40.870 --> 00:18:44.850
no matter what and we would never ever, not for one single moment be

332
00:18:44.870 --> 00:18:47.980
upset or disappointed if he felt he cannot continue.

333
00:18:48.000 --> 00:18:49.790
He was in charge.

334
00:18:49.810 --> 00:18:53.860
He would choose -- and we would follow his lead.

335
00:18:53.880 --> 00:18:57.860
I understood if it was too much for his body or brain to gone he

336
00:18:57.880 --> 00:19:00.860
was enough for who he was and what the situation was and we were so

337
00:19:00.880 --> 00:19:03.720
proud of him for trying.

338
00:19:03.740 --> 00:19:08.720
He leaps on and we will follow you anywhere -- you lead on

339
00:19:08.740 --> 00:19:12.530
We had no idea that that moment was assuming confidence.

340
00:19:12.550 --> 00:19:16.530
As the entire medical team, my parents and Tyson's father circled

341
00:19:16.550 --> 00:19:20.530
around I clumsily clung to my child, squeezing so tight while the tubes

342
00:19:20.550 --> 00:19:22.580
were removed.

343
00:19:22.600 --> 00:19:25.070
Not one breath, they reminded us.

344
00:19:25.090 --> 00:19:26.250
We waited.

345
00:19:26.270 --> 00:19:30.210
Then it came.

346
00:19:30.230 --> 00:19:33.890
And again and again.

347
00:19:33.910 --> 00:19:36.790
Involuntary reflex, it will stop soon.

348
00:19:36.810 --> 00:19:42.900
But no, Tyson just kept breathing.

349
00:19:42.920 --> 00:19:45.770
This makes no sense they said.

350
00:19:45.790 --> 00:19:48.170
He never took a voluntary breath.

351
00:19:48.190 --> 00:19:49.970
While on the ventilator it did all the work.

352
00:19:49.990 --> 00:19:53.970
I said at the time what felt like the dumbest thing but now realize

353
00:19:53.990 --> 00:19:56.940
was completely accurate, shrugging I said he was just resting.

354
00:19:56.960 --> 00:20:02.190
No need to work when you do not have to.

355
00:20:02.210 --> 00:20:06.190
Another example, as Tyson continued to live he was switch to a

356
00:20:06.210 --> 00:20:08.590
gastronomy tool which required us to date of surgery.

357
00:20:08.610 --> 00:20:12.590
Although he was a little over two weeks old at this time, because he

358
00:20:12.610 --> 00:20:16.580
was not there they gave him no pain medicine whatsoever.

359
00:20:16.600 --> 00:20:18.550
He kept making this teeny tiny noise.

360
00:20:18.570 --> 00:20:22.250
I had never heard him make a noise.

361
00:20:22.270 --> 00:20:24.870
It seemed voluntary and it was not him breathing funny.

362
00:20:24.890 --> 00:20:30.070
It was barely audible if there was too much background noise.

363
00:20:30.090 --> 00:20:32.550
But it was noise.

364
00:20:32.570 --> 00:20:35.350
I just knew he was in pain.

365
00:20:35.370 --> 00:20:37.020
I paged assistance and residents came by.

366
00:20:37.040 --> 00:20:41.080
He asked how I could possibly know if my child felt pain?

367
00:20:41.100 --> 00:20:47.080
When they did the pain response test, pinching him there was no

368
00:20:47.100 --> 00:20:49.680
response.

369
00:20:49.700 --> 00:20:52.680
Have you had a literal whole or into your stomach and had no pain

370
00:20:52.700 --> 00:20:53.450
meds?

371
00:20:53.470 --> 00:20:56.250
That is what my baby was enduring.

372
00:20:56.270 --> 00:21:00.250
I said I do not know for sure if he is in pain, but he has always

373
00:21:00.270 --> 00:21:02.950
been this one way and now it is different.

374
00:21:02.970 --> 00:21:06.410
This resident thought I was out of my mind and projecting.

375
00:21:06.430 --> 00:21:11.410
He told me I was not willing to accept the reality and did not know

376
00:21:11.430 --> 00:21:13.010
the surgery was occurred.

377
00:21:13.030 --> 00:21:17.010
Lower after will hold to appease me the postpartum dramatic mother,

378
00:21:17.030 --> 00:21:22.170
they gave Tyson a pain medication and the noise stopped.

379
00:21:22.190 --> 00:21:25.170
During an outpatient visit a neurology head nurse told me I had

380
00:21:25.190 --> 00:21:29.170
to decide what type of mother I wanted to be after stating I

381
00:21:29.190 --> 00:21:30.690
thought Tyson seizures could be better controlled.

382
00:21:30.710 --> 00:21:36.680
Did I really want to be a mother who lived in an alternate...

383
00:21:36.700 --> 00:21:38.260


384
00:21:38.280 --> 00:21:41.260
After stating the seizures could be better controlled she asked if I

385
00:21:41.280 --> 00:21:45.260
wanted to be a mother who lived an alternate reality were my child

386
00:21:45.280 --> 00:21:47.260
could or should receive treatment?

387
00:21:47.280 --> 00:21:50.260
She questioned why it was so insistent he should live and suffer,

388
00:21:50.280 --> 00:21:53.860
let nature take its course instead.

389
00:21:53.880 --> 00:21:57.860
She said I was being selfish and really reevaluate what type of

390
00:21:57.880 --> 00:22:01.260
mother I wanted to be.

391
00:22:01.280 --> 00:22:03.400
Seriously she quietly chided, you have issues.

392
00:22:03.420 --> 00:22:07.400
Within that same office on a different visit I stated I knew

393
00:22:07.420 --> 00:22:10.820
there was something wrong with Tyson to the neurologist.

394
00:22:10.840 --> 00:22:14.820
Tyson cannot move his body voluntarily but he was acting like

395
00:22:14.840 --> 00:22:17.640
a malfunctioning robot for lack of a better term.

396
00:22:17.660 --> 00:22:21.640
She scoffed and told me that was impossible and I was wishing Tyson

397
00:22:21.660 --> 00:22:24.840
could do something.

398
00:22:24.860 --> 00:22:28.840
I denied this theory and reminded her I had been the one to set up

399
00:22:28.860 --> 00:22:30.640
the appointment because I was seriously concerned about the

400
00:22:30.660 --> 00:22:31.930
malfunctioning robot who is my child.

401
00:22:31.950 --> 00:22:34.840
She stated, I know you think you know.

402
00:22:34.860 --> 00:22:40.830
I wish you didn't know but my specialty is the brain and I

403
00:22:40.850 --> 00:22:41.840


404
00:22:41.860 --> 00:22:44.440
promise you he is not doing anything I got a second opinion a

405
00:22:44.460 --> 00:22:46.440
few days later because I was terrified by the continued

406
00:22:46.460 --> 00:22:53.390
malfunctioning robot displays that were increasing in severity.

407
00:22:53.410 --> 00:22:54.190
And consistency.

408
00:22:54.210 --> 00:22:57.190
When I called to inquire and explain I had no other way to

409
00:22:57.210 --> 00:23:02.190
describe my child and was desperate for a second opinion the doctor

410
00:23:02.210 --> 00:23:07.190
called out an hour later and said I must bring Tyson in the next

411
00:23:07.210 --> 00:23:10.190
morning.

412
00:23:10.210 --> 00:23:12.590
First thing, even before the office opened so he could see him.

413
00:23:12.610 --> 00:23:15.590
He knew that Tyson specific brain injury was usually associated with

414
00:23:15.610 --> 00:23:19.590
and susceptible to a dangerous type of seizure disorder known as

415
00:23:19.610 --> 00:23:22.230
infantile spasms.

416
00:23:22.250 --> 00:23:24.700
Yes Tyson showed the telltale signs.

417
00:23:24.720 --> 00:23:28.700
He is having uncontrolled infantile seizures clinically by

418
00:23:28.720 --> 00:23:32.690
EEG and observationally.

419
00:23:32.710 --> 00:23:36.690
More months of intramuscular injunctions… And in case you are

420
00:23:36.710 --> 00:23:41.690
curious, we do continue to see this neurologist who gave us some actual

421
00:23:41.710 --> 00:23:42.190
help.

422
00:23:42.210 --> 00:23:45.060
He is an amazing practitioner.

423
00:23:45.080 --> 00:23:49.060
Remember these stories I'm sharing with you are happening in rapid

424
00:23:49.080 --> 00:23:49.560
succession.

425
00:23:49.580 --> 00:23:52.060
We are not talking about years, but rather weeks.

426
00:23:52.080 --> 00:23:55.930
Unless we forget Tyson is going to die any second now.

427
00:23:55.950 --> 00:23:59.930
By now I have resuscitated my child twice my back masking him and

428
00:23:59.950 --> 00:24:04.210
our emergency room knows us on a first name basis.

429
00:24:04.230 --> 00:24:08.210
We have made multiple paramedics cried dear due to our situation and

430
00:24:08.230 --> 00:24:14.170
I have our primary care is physician private number.

431
00:24:14.190 --> 00:24:16.600
She is officially unofficially on-call throws 24 seven.

432
00:24:16.620 --> 00:24:20.490
We have Tyson's room in the pediatric care unit at this time.

433
00:24:20.510 --> 00:24:23.320
We know the staff and have our preferred people.

434
00:24:23.340 --> 00:24:27.320
I can still tell you the specials that rotate every week at their

435
00:24:27.340 --> 00:24:28.860
cafeteria.

436
00:24:28.880 --> 00:24:32.860
While enduring all of that and untold number of medical and

437
00:24:32.880 --> 00:24:36.840
service providers asked how I knew he was in there.

438
00:24:36.860 --> 00:24:41.190
I did not per se but the thought of him being in there was nice.

439
00:24:41.210 --> 00:24:44.190
At times the feedback from these individuals affected my parenting,

440
00:24:44.210 --> 00:24:47.510
how often I held him, what I did with him.

441
00:24:47.530 --> 00:24:51.500
It made me question if I was literally losing my mind.

442
00:24:51.520 --> 00:24:53.500
Was I living in an alternate universe?

443
00:24:53.520 --> 00:24:56.790
Did I think more of my child and what he was?

444
00:24:56.810 --> 00:25:02.780
Could he really truly be in there?

445
00:25:02.800 --> 00:25:04.160


446
00:25:04.180 --> 00:25:06.490
Can my love for my first child overshadowed?

447
00:25:06.510 --> 00:25:12.490
I was giving my brain-dead son way too much credit, he was not able or

448
00:25:12.510 --> 00:25:14.490
capable of doing anything ever.

449
00:25:14.510 --> 00:25:17.790
Expect nothing but death, love him to death you crazy mother.

450
00:25:17.810 --> 00:25:23.780
There is nothing more than that for you or for him.

451
00:25:23.800 --> 00:25:25.390


452
00:25:25.410 --> 00:25:29.390
It is easy to forget one's early intervention is triggered, the

453
00:25:29.410 --> 00:25:33.390
family is likely still dealing with coming to terms with the diagnosis

454
00:25:33.410 --> 00:25:34.190
or diagnoses.

455
00:25:34.210 --> 00:25:38.190
They are having a variety of emotions in relation and are now

456
00:25:38.210 --> 00:25:40.450
being told their child needs early intervention.

457
00:25:40.470 --> 00:25:44.450
Most families do not really know what this is or what it could or

458
00:25:44.470 --> 00:25:47.650
should be.

459
00:25:47.670 --> 00:25:50.250
They likely do not know if the services they are getting our best

460
00:25:50.270 --> 00:25:53.120
practices, necessary or relevant to their child.

461
00:25:53.140 --> 00:25:56.120
The most diagnoses or disabilities, the less a family is to make sense

462
00:25:56.140 --> 00:25:58.120
of it all -- the more

463
00:25:58.140 --> 00:26:03.120
There are rotating cast and crew of case managers, service providers

464
00:26:03.140 --> 00:26:06.890
and many others who are suddenly in your home.

465
00:26:06.910 --> 00:26:07.890
Can you imagine?

466
00:26:07.910 --> 00:26:11.890
They are judging the state of your home because for some, it is

467
00:26:11.910 --> 00:26:15.590
literally part of their job.

468
00:26:15.610 --> 00:26:17.590
They judge how you look.

469
00:26:17.610 --> 00:26:21.710
Do I have clean clothes on?

470
00:26:21.730 --> 00:26:27.320
The doorbell rings too often and the dog barks furiously every time.

471
00:26:27.340 --> 00:26:29.210
You cannot nap rest.

472
00:26:29.230 --> 00:26:31.210
What is this person's name?

473
00:26:31.230 --> 00:26:32.010
No clue.

474
00:26:32.030 --> 00:26:35.620
Why are they here yet again and what is their specialty?

475
00:26:35.640 --> 00:26:41.610
Upon our first meeting with the case manager, Tyson was asleep and

476
00:26:41.630 --> 00:26:42.610


477
00:26:42.630 --> 00:26:43.420
angled bassinet.

478
00:26:43.440 --> 00:26:46.740
She eased in an plunked herself out on my couch.

479
00:26:46.760 --> 00:26:50.740
She said she was Bethany my case manager and she asked the first

480
00:26:50.760 --> 00:26:51.240
question.

481
00:26:51.260 --> 00:26:53.740
Are you always like this?

482
00:26:53.760 --> 00:26:55.740
Pointing at him.

483
00:26:55.760 --> 00:26:56.270
What?

484
00:26:56.290 --> 00:26:58.030
You ever hold him?

485
00:26:58.050 --> 00:27:00.580
How often would you say you hold him?

486
00:27:00.600 --> 00:27:03.460
Every couple days or less than that?

487
00:27:03.480 --> 00:27:06.740
Nice to meet you too I guess.

488
00:27:06.760 --> 00:27:09.340
I remind you dear audience he was asleep like so many babies often

489
00:27:09.360 --> 00:27:12.600
do.

490
00:27:12.620 --> 00:27:16.600
Try to remember you are in their home and you are taking up space in

491
00:27:16.620 --> 00:27:18.800
their minds, not just in their homes.

492
00:27:18.820 --> 00:27:22.420
This is their child and this is nerve-racking.

493
00:27:22.440 --> 00:27:26.420
Believe they are trying their best to navigate this new landscape, are

494
00:27:26.440 --> 00:27:29.420
capable of making informed decisions with the best interest of

495
00:27:29.440 --> 00:27:31.820
their child or family in mind.

496
00:27:31.840 --> 00:27:38.170
Be relaxed, nonjudgmental, warm and open to the family and child.

497
00:27:38.190 --> 00:27:42.170
Assume they are competent, capable and available to interactions,

498
00:27:42.190 --> 00:27:44.570
feedback and suggestions.

499
00:27:44.590 --> 00:27:48.570
You might surmise I just gave that advice for a reason and you would

500
00:27:48.590 --> 00:27:49.370
be right.

501
00:27:49.390 --> 00:27:52.570
You know I have a story to tell.

502
00:27:52.590 --> 00:27:54.570
During the early intervention physical therapy initial visit, the

503
00:27:54.590 --> 00:27:59.570
physical therapist flew through the door, not knowing what she was

504
00:27:59.590 --> 00:28:01.640
walking into.

505
00:28:01.660 --> 00:28:04.860
It appeared she was expecting a mostly functioning child.

506
00:28:04.880 --> 00:28:08.580
Tyson was sitting in a comfortable, reclined baby chair.

507
00:28:08.600 --> 00:28:12.580
Oxygen on his face and he looked like a newborn although he was

508
00:28:12.600 --> 00:28:15.160
months old, due to failure to thrive.

509
00:28:15.180 --> 00:28:17.820
He is not moving because he literally cannot.

510
00:28:17.840 --> 00:28:19.900
He is just chilling as we called it.

511
00:28:19.920 --> 00:28:23.900
Please keep in mind all of this woman does this pediatric PT and

512
00:28:23.920 --> 00:28:29.410
early intervention and she has little decades of experience.

513
00:28:29.430 --> 00:28:32.410
She walked over after I introduced myself and Tyson, laid one glance

514
00:28:32.430 --> 00:28:37.410
upon him, pivoted her upper body and said and I quote "I do not know

515
00:28:37.430 --> 00:28:40.410
what you want me to do with this."

516
00:28:40.430 --> 00:28:42.590
Yes, that hand motion is a real thing.

517
00:28:42.610 --> 00:28:46.640
Let me say it again so you can really take it in.

518
00:28:46.660 --> 00:28:49.640
"I do not know what you want me to do with this."

519
00:28:49.660 --> 00:28:53.640
This thing that she does not know what to do with is my terminally

520
00:28:53.660 --> 00:28:55.720
ill baby.

521
00:28:55.740 --> 00:28:59.720
My firstborn who I adore and am terrified of loving, I also do not

522
00:28:59.740 --> 00:29:05.430
know what the hell I am supposed to be doing with him.

523
00:29:05.450 --> 00:29:07.830
Like most, I expected a healthy, perfect baby but instead I got

524
00:29:07.850 --> 00:29:10.990
this.

525
00:29:11.010 --> 00:29:13.990
This professional does not know what to do either?

526
00:29:14.010 --> 00:29:17.190
He is not even a person to her.

527
00:29:17.210 --> 00:29:19.190
What am I thinking treating him as a person?

528
00:29:19.210 --> 00:29:21.160
Is that right or wrong?

529
00:29:21.180 --> 00:29:24.160
Questioning my parent choices and feeling alone with a very sick baby,

530
00:29:24.180 --> 00:29:29.160
a baby who does not see or hear me and does not know where he is or

531
00:29:29.180 --> 00:29:33.160
who I am.

532
00:29:33.180 --> 00:29:35.980
Or does he?

533
00:29:36.000 --> 00:29:40.980
A provider who specializes in deaf blindness, who is doing a webinar

534
00:29:41.000 --> 00:29:46.800
next week and is a true treasure, came from her plan second visit.

535
00:29:46.820 --> 00:29:49.800
I must have mentioned something about my questioning of Tyson's

536
00:29:49.820 --> 00:29:51.000
abilities and availability.

537
00:29:51.020 --> 00:29:53.140
Her advice, assume confidence.

538
00:29:53.160 --> 00:29:56.230
You do not realize it but you already are.

539
00:29:56.250 --> 00:29:57.960
Keep going with it.

540
00:29:57.980 --> 00:30:01.520
Take it further, always assume competence.

541
00:30:01.540 --> 00:30:03.920
That he understands and is paying attention even if he cannot show

542
00:30:03.940 --> 00:30:06.020
it.

543
00:30:06.040 --> 00:30:08.650
I was floored.

544
00:30:08.670 --> 00:30:11.650
I probably looked like that about you with the top of his head

545
00:30:11.670 --> 00:30:12.450
blowing off.

546
00:30:12.470 --> 00:30:16.410
No one had ever suggested this.

547
00:30:16.430 --> 00:30:18.410
In fact always the complete opposite.

548
00:30:18.430 --> 00:30:21.210
It is what has made me question my own abilities as a parent and

549
00:30:21.230 --> 00:30:24.610
sometimes my sanity.

550
00:30:24.630 --> 00:30:27.410
She believed in Tyson and in me.

551
00:30:27.430 --> 00:30:29.810
She assumed we were both competent, something that we needed a boost

552
00:30:29.830 --> 00:30:32.580
of skills, empathy and safety to learn and grow.

553
00:30:32.600 --> 00:30:38.570
But, how would I know that Tyson was actually competent?

554
00:30:38.590 --> 00:30:40.830


555
00:30:40.850 --> 00:30:43.230
One day, while sitting in a recliner, baby Tyson was resting in

556
00:30:43.250 --> 00:30:46.530
my arms.

557
00:30:46.550 --> 00:30:48.660
I was watching TV.

558
00:30:48.680 --> 00:30:51.060
I felt someone looking at me.

559
00:30:51.080 --> 00:30:54.140
Many of you probably know the feeling I am talking about.

560
00:30:54.160 --> 00:30:58.140
I kept watching TV but continually felt that sense of being watched,

561
00:30:58.160 --> 00:31:01.540
yet I am home alone.

562
00:31:01.560 --> 00:31:02.270
Or am I?

563
00:31:02.290 --> 00:31:05.930
I gaze down to my left and there with Tyson.

564
00:31:05.950 --> 00:31:06.930
Are you?

565
00:31:06.950 --> 00:31:09.320
Are you looking at me?

566
00:31:09.340 --> 00:31:10.970
Do you see me?

567
00:31:10.990 --> 00:31:16.060
Not through me, not nothingness, but do you see me?

568
00:31:16.080 --> 00:31:17.840
It was eye contact.

569
00:31:17.860 --> 00:31:20.880
He had found his mama and I saw him too.

570
00:31:20.900 --> 00:31:22.910
He was in there.

571
00:31:22.930 --> 00:31:24.500
I was not crazy.

572
00:31:24.520 --> 00:31:28.500
I was not wrong and I was not a bad mother for wanting him to be in

573
00:31:28.520 --> 00:31:31.820
there, because he was!

574
00:31:31.840 --> 00:31:32.820
We built upon that immediately.

575
00:31:32.840 --> 00:31:34.990
Always awarding times of eye contact.

576
00:31:35.010 --> 00:31:37.270
It was our first communication.

577
00:31:37.290 --> 00:31:39.190
We connected.

578
00:31:39.210 --> 00:31:42.460
I was fearful, I cannot deny that.

579
00:31:42.480 --> 00:31:45.460
In the beginning I questioned if I made it up.

580
00:31:45.480 --> 00:31:49.480
Assume competence I kept reminding myself.

581
00:31:49.500 --> 00:31:53.480
Tyson used to smile only one having a seizure, it was both beautiful

582
00:31:53.500 --> 00:31:56.680
and absolutely heartbreaking.

583
00:31:56.700 --> 00:31:58.680
But don't worry, I did not bring those videos today.

584
00:31:58.700 --> 00:32:03.680
To think this would be the only way I could see my boy smile upset me

585
00:32:03.700 --> 00:32:07.480
on multiple occasions.

586
00:32:07.500 --> 00:32:09.480
Tyson's fourth birthday rolled around, which we were not supposed

587
00:32:09.500 --> 00:32:13.480
to see and like I assumed it would be filmed -- filled with wonder,

588
00:32:13.500 --> 00:32:17.080
pain, and difficult emotions.

589
00:32:17.100 --> 00:32:20.620
The trauma often suffocated what could be a special day.

590
00:32:20.640 --> 00:32:24.620
On this birthday in the late afternoon, I did something I do not

591
00:32:24.640 --> 00:32:28.220
recall what – Tyson smiled.

592
00:32:28.240 --> 00:32:30.260
But, he did not cease.

593
00:32:30.280 --> 00:32:33.130
He just smiled.

594
00:32:33.150 --> 00:32:36.130
And I swore loudly, "holy…"

595
00:32:36.150 --> 00:32:42.120
Questioning my sanity once again, I tried to replicate the smile.

596
00:32:42.140 --> 00:32:43.130


597
00:32:43.150 --> 00:32:45.930
For a while, nothing but a few minutes later I came into his view

598
00:32:45.950 --> 00:32:49.530
again and he smiled.

599
00:32:49.550 --> 00:32:50.730
It was real.

600
00:32:50.750 --> 00:32:52.730
He was capable of emotions.

601
00:32:52.750 --> 00:32:54.330
Glad to see me.

602
00:32:54.350 --> 00:32:59.330
The dog came over not long after in he licked his hand and Tyson

603
00:32:59.350 --> 00:33:02.930
smiled 1/2 Elvis grin.

604
00:33:02.950 --> 00:33:03.430
I smiled.

605
00:33:03.450 --> 00:33:04.830
Happy birthday to us both.

606
00:33:04.850 --> 00:33:06.830
It was such a gift.

607
00:33:06.850 --> 00:33:08.830
The last example is probably one of my favorites.

608
00:33:08.850 --> 00:33:12.830
For a child who is only supposed to live eight days, his birthday in

609
00:33:12.850 --> 00:33:14.830
the following seven days were always difficult, consistently

610
00:33:14.850 --> 00:33:20.820
filled with deep emotions and anxiety.

611
00:33:20.840 --> 00:33:22.370


612
00:33:22.390 --> 00:33:26.370
I wanted to make it to one year, then two, then three – then I

613
00:33:26.390 --> 00:33:27.570
wanted five – half a decade.

614
00:33:27.590 --> 00:33:29.570
As time progressed I saw a big goal in sight.

615
00:33:29.590 --> 00:33:31.970
Eight years.

616
00:33:31.990 --> 00:33:32.770
Could it be possible?

617
00:33:32.790 --> 00:33:33.270
Yes.

618
00:33:33.290 --> 00:33:34.070
Yes it could.

619
00:33:34.090 --> 00:33:34.870
It did.

620
00:33:34.890 --> 00:33:37.870
This child who was supposed to live eight days lived his entire eighth

621
00:33:37.890 --> 00:33:40.670
year and just turn 10!

622
00:33:40.690 --> 00:33:44.200
Talk about joy, happiness, tears.

623
00:33:44.220 --> 00:33:48.200
This kids that you see on the screen is truly something magical.

624
00:33:48.220 --> 00:33:50.230
It is incomprehensible in so many ways.

625
00:33:50.250 --> 00:33:54.990
And now we are dreaming big for 13 to make it to teenage.

626
00:33:55.010 --> 00:33:56.990
So, what does it mean?

627
00:33:57.010 --> 00:33:59.970
It is OK to assume best intentions.

628
00:33:59.990 --> 00:34:01.970
Feel positive about that choice.

629
00:34:01.990 --> 00:34:04.370
It is never wrong to assume the competence of the person before

630
00:34:04.390 --> 00:34:04.870
you.

631
00:34:04.890 --> 00:34:08.180
Treat them like a person.

632
00:34:08.200 --> 00:34:12.180
Allow the child to lead the way when possible, you are not hurting

633
00:34:12.200 --> 00:34:14.340
anyone by teaching them autonomy and self-worth.

634
00:34:14.360 --> 00:34:18.340
And so it is cliché, there are true life lessons to be learned when we

635
00:34:18.360 --> 00:34:20.490
treat others the way we wish to be treated.

636
00:34:20.510 --> 00:34:23.490
Assuming competence feels good to all parties involved in the

637
00:34:23.510 --> 00:34:25.490
interaction, whether they are currently able to express it or

638
00:34:25.510 --> 00:34:28.890
not.

639
00:34:28.910 --> 00:34:32.440
By assuming competence, I believed Tyson found reasons to stay.

640
00:34:32.460 --> 00:34:35.640
I know it will not be forever – I am acutely aware I am on Baller

641
00:34:35.660 --> 00:34:38.570
time.

642
00:34:38.590 --> 00:34:44.570
-- Borrowed time, but these moments up and life-changing.

643
00:34:44.590 --> 00:34:46.760
Treat as though his body is betraying him but his personality,

644
00:34:46.780 --> 00:34:50.360
his true being is alive and well.

645
00:34:50.380 --> 00:34:52.360
Capable in his own ways.

646
00:34:52.380 --> 00:34:54.960
It will simply take time and a whole lot of effort between himself

647
00:34:54.980 --> 00:34:57.290
and a communication partner to coordinate letting it out.

648
00:34:57.310 --> 00:35:01.290
I was not wrong in following his lead, no matter how slow the

649
00:35:01.310 --> 00:35:04.490
journey is sometimes.

650
00:35:04.510 --> 00:35:06.090
These moments changed everything.

651
00:35:06.110 --> 00:35:08.690
You can have this for your child or family, or assist in creating

652
00:35:08.710 --> 00:35:14.750
these core memories for the families you work with as well.

653
00:35:14.770 --> 00:35:16.980
So, lessons and takeaways.

654
00:35:17.000 --> 00:35:19.980
When best practices according to the professionals conflict, you

655
00:35:20.000 --> 00:35:22.320
need to have a strong ability in your competence.

656
00:35:22.340 --> 00:35:22.820
Silos.

657
00:35:22.840 --> 00:35:26.490
Stay in your lane to have awareness of the cars around you.

658
00:35:26.510 --> 00:35:28.490
Is there an exit coming up?

659
00:35:28.510 --> 00:35:31.680
Prepare the family.

660
00:35:31.700 --> 00:35:32.890
Nonverbal does not mean noncommunicative.

661
00:35:32.910 --> 00:35:36.320
Positivity and belief in the child and family is critical.

662
00:35:36.340 --> 00:35:38.870
And if you assume competence, the family will follow suit.

663
00:35:38.890 --> 00:35:42.870
It is OK if they need to have encouragement or gain self-esteem

664
00:35:42.890 --> 00:35:45.870
in this area.

665
00:35:45.890 --> 00:35:48.870
Assume competence in both the child in the family numbers and do

666
00:35:48.890 --> 00:35:50.270
not forget to assume competence in yourself.

667
00:35:50.290 --> 00:35:51.470
Lead by example.

668
00:35:51.490 --> 00:35:54.470
It is easy to focus on your own specialty.

669
00:35:54.490 --> 00:35:57.270
Of course, this is important.

670
00:35:57.290 --> 00:35:59.670
However, sometimes it is important to learn about who else is involved

671
00:35:59.690 --> 00:36:05.840
with the family, what proverbial cars are around you?

672
00:36:05.860 --> 00:36:09.840
You might be giving suggestions or homework to the family, but is

673
00:36:09.860 --> 00:36:10.840
there a traffic jam?

674
00:36:10.860 --> 00:36:13.040
How many are also giving suggestions of things to work on

675
00:36:13.060 --> 00:36:15.240
daily to fit in with household duties, appointments, work and do

676
00:36:15.260 --> 00:36:18.950
not forget to connect your child!

677
00:36:18.970 --> 00:36:19.950
Families often hear conflicting messages.

678
00:36:19.970 --> 00:36:23.950
Do all of the things in the best interest of the child but do not do

679
00:36:23.970 --> 00:36:28.350
all the things to avoid burnout.

680
00:36:28.370 --> 00:36:31.350
Connecting with her child is number one, but it's also super

681
00:36:31.370 --> 00:36:35.350
important that you do X, Y, Z daily or terrible things might happen

682
00:36:35.370 --> 00:36:38.550
like no progress.

683
00:36:38.570 --> 00:36:41.550
For some of us, being told what to do means that we will at the

684
00:36:41.570 --> 00:36:43.150
expense of other things.

685
00:36:43.170 --> 00:36:45.150
The awareness and teamwork needed amongst all providers is critical

686
00:36:45.170 --> 00:36:48.470
to help find a balance that treats the child and family holistically.

687
00:36:48.490 --> 00:36:51.470
We are just trying to keep our highway clean.

688
00:36:51.490 --> 00:36:55.470
You can assist by ensuring there is regular communication amongst

689
00:36:55.490 --> 00:36:59.470
everyone who works with the child and family.

690
00:36:59.490 --> 00:37:03.470
This also takes the stress off the parent, who no longer has to play

691
00:37:03.490 --> 00:37:06.870
intermediary or go-between.

692
00:37:06.890 --> 00:37:09.280
When important changes are coming, the more notice the better.

693
00:37:09.300 --> 00:37:14.280
That includes changes in providers, case managers, or moving into the

694
00:37:14.300 --> 00:37:15.280
school system.

695
00:37:15.300 --> 00:37:19.280
When possible, these things should not be a surprise.

696
00:37:19.300 --> 00:37:23.920
Families need time to prepare for the exit approaching.

697
00:37:23.940 --> 00:37:27.920
By giving extra support if needed, families can go into these changes

698
00:37:27.940 --> 00:37:30.120
feeling prepared, confident in the team and competent in their ability

699
00:37:30.140 --> 00:37:32.120
to adjust the said changes.

700
00:37:32.140 --> 00:37:34.020
This increases feelings of independence and self-worth.

701
00:37:34.040 --> 00:37:40.020
And if I may, please, please me stress – nonverbal does not ever

702
00:37:40.040 --> 00:37:43.020
mean noncommunicative.

703
00:37:43.040 --> 00:37:47.020
Too often, professionals are putting the two as the same in

704
00:37:47.040 --> 00:37:50.020
teaching families the lesson.

705
00:37:50.040 --> 00:37:50.520
They are.

706
00:37:50.540 --> 00:37:51.020
Not.

707
00:37:51.040 --> 00:37:51.620
The same.

708
00:37:51.640 --> 00:37:54.620
While not necessarily using the language of the majority culture,

709
00:37:54.640 --> 00:38:01.130
it does not mean they do not have the ability to committee K.

710
00:38:01.150 --> 00:38:04.130
It might be language, sounds, sign language, body linkage, behavior,

711
00:38:04.150 --> 00:38:06.130
eye gaze, manipulative systems, touch cues and many many other

712
00:38:06.150 --> 00:38:12.090
ways.

713
00:38:12.110 --> 00:38:14.730
Tyson communicate via vocalizations.

714
00:38:14.750 --> 00:38:18.730
Meaning, full blinks, eye gazes, tongue movements and or attempts at

715
00:38:18.750 --> 00:38:22.560
making noise, the only air comes out.

716
00:38:22.580 --> 00:38:25.560
Depending on his alertness, health status and other variables, Tyson

717
00:38:25.580 --> 00:38:27.960
will use one or more modes of communication to get his point

718
00:38:27.980 --> 00:38:29.920
across.

719
00:38:29.940 --> 00:38:33.920
Because each and every one of these were responded to as a bid

720
00:38:33.940 --> 00:38:40.420
for communication, he made the connection that I understood.

721
00:38:40.440 --> 00:38:44.420
Noises changed over time to clear, repeated sounds for yes or no, like

722
00:38:44.440 --> 00:38:46.420
or dislike, annoyance or happiness.

723
00:38:46.440 --> 00:38:48.820
And they are not the same to sounds used as positive and

724
00:38:48.840 --> 00:38:49.320
negative.

725
00:38:49.340 --> 00:38:51.590
He has a small repertoire.

726
00:38:51.610 --> 00:38:54.590
If the communication partners not noticing these as anything other

727
00:38:54.610 --> 00:38:57.590
than a special needs kid making noise, they are losing an

728
00:38:57.610 --> 00:39:01.740
incredible opportunity to get to know Tyson.

729
00:39:01.760 --> 00:39:04.140
Finally, you must lead by example.

730
00:39:04.160 --> 00:39:08.130
If you assume you are competent, the child is competent, and

731
00:39:08.150 --> 00:39:12.140
families are also competent, with dedication, best practices, and yes

732
00:39:12.160 --> 00:39:15.740
– hard work – the sky is the limit.

733
00:39:15.760 --> 00:39:19.740
And no, children like Tyson will not get up and sing and dance, no

734
00:39:19.760 --> 00:39:23.730
matter how hard anyone works, but they may learn to enjoy watching,

735
00:39:23.750 --> 00:39:27.730
touching, movement, music, or any other number of things that vastly

736
00:39:27.750 --> 00:39:31.070
expand their quality of life.

737
00:39:31.090 --> 00:39:35.070
These are huge milestones for children with multiple

738
00:39:35.090 --> 00:39:35.570
disabilities.

739
00:39:35.590 --> 00:39:39.380
Never underestimate the power of reaching a goal.

740
00:39:39.400 --> 00:39:43.380
Ensure you know basic skills such as weight time and there is so much

741
00:39:43.400 --> 00:39:46.180
waiting, but the wait is worth it.

742
00:39:46.200 --> 00:39:49.180
And respond to any change as if it is a bid for communication.

743
00:39:49.200 --> 00:39:55.170
The child, when assumed competent, do not miss the little ones because

744
00:39:55.190 --> 00:39:57.180


745
00:39:57.200 --> 00:40:00.980
you are looking for the big ones.

746
00:40:01.000 --> 00:40:03.210
If you see it in others, your work grows and expands.

747
00:40:03.230 --> 00:40:07.320
You become competent and a well-rounded provider.

748
00:40:07.340 --> 00:40:08.320
So, what can I do?

749
00:40:08.340 --> 00:40:10.660
Action steps.

750
00:40:10.680 --> 00:40:13.670
Assume your competence by adjusting your mindset on the child

751
00:40:13.690 --> 00:40:16.070
and family.

752
00:40:16.090 --> 00:40:19.070
Believe that they are available, able, and capable, matter the

753
00:40:19.090 --> 00:40:21.460
communication mode.

754
00:40:21.480 --> 00:40:23.660
The child is capable of communicating, the burden is on you

755
00:40:23.680 --> 00:40:26.460
to recognize it.

756
00:40:26.480 --> 00:40:29.460
Believe in the best in yourself, are you seeking best practices for

757
00:40:29.480 --> 00:40:32.460
your profession or family life, check in and are you having

758
00:40:32.480 --> 00:40:35.460
positive interactions and truly enjoying time with the child or

759
00:40:35.480 --> 00:40:36.870
family?

760
00:40:36.890 --> 00:40:39.870
Believe that the child's diagnoses and/or disabilities do not prevent

761
00:40:39.890 --> 00:40:43.870
them from connection, learning, absorbing, changing, growing,

762
00:40:43.890 --> 00:40:49.860
loving, or having wants and needs, and preferences.

763
00:40:49.880 --> 00:40:50.930


764
00:40:50.950 --> 00:40:53.930
Understand any child is whole being with thoughts and feelings,

765
00:40:53.950 --> 00:40:55.930
whether they are currently able to express them or not.

766
00:40:55.950 --> 00:40:59.930
And if this is an area you feel that needs work, trust that you can

767
00:40:59.950 --> 00:41:02.910
start the change now.

768
00:41:02.930 --> 00:41:04.910
Start big, start small, just start.

769
00:41:04.930 --> 00:41:11.640
Believe that you are capable of change.

770
00:41:11.660 --> 00:41:14.640
It may not be easy, but it is feasible.

771
00:41:14.660 --> 00:41:16.440
Do not discount reach out to mentors, leadership, coworkers,

772
00:41:16.460 --> 00:41:17.440
agencies, organizations that are related.

773
00:41:17.460 --> 00:41:21.440
You can also suggest or seek associates who will help you in

774
00:41:21.460 --> 00:41:24.040
creating a workgroup or support group as a way to learn from each

775
00:41:24.060 --> 00:41:25.180
other.

776
00:41:25.200 --> 00:41:28.610
You can invite guest speakers and family numbers.

777
00:41:28.630 --> 00:41:32.610
So, what are the systems that require changing to make assuming

778
00:41:32.630 --> 00:41:37.610
competence and natural part of EHDI, EI, educational systems and

779
00:41:37.630 --> 00:41:40.500
families?

780
00:41:40.520 --> 00:41:43.500
It starts with individual thought processes then moves to agency

781
00:41:43.520 --> 00:41:46.500
organizational leadership, then policies and procedures through the

782
00:41:46.520 --> 00:41:51.480
department or agency of education, and legislation.

783
00:41:51.500 --> 00:41:55.940
And then you have educational institutions and medical systems.

784
00:41:55.960 --> 00:41:56.940
I know.

785
00:41:56.960 --> 00:41:58.940
That list seems short, but it is also very overwhelming.

786
00:41:58.960 --> 00:42:03.940
I am sure some of you are nodding along with that.

787
00:42:03.960 --> 00:42:07.460
So, what are the benefits of assuming competence?

788
00:42:07.480 --> 00:42:12.430
Increase self esteem for the child, family members and professionals.

789
00:42:12.450 --> 00:42:16.990
Increased self-worth and self-confidence for the child.

790
00:42:17.010 --> 00:42:21.580
Increased communication and connection for, and with the child!

791
00:42:21.600 --> 00:42:26.460
More appropriate policies, procedures, rules and regulations.

792
00:42:26.480 --> 00:42:28.460
Legislation that supports individuals with disabilities, and

793
00:42:28.480 --> 00:42:31.610
medical complexities.

794
00:42:31.630 --> 00:42:34.610
Increased funding for programs and other supports that benefit

795
00:42:34.630 --> 00:42:38.920
individuals with disabilities and medical complexities.

796
00:42:38.940 --> 00:42:43.920
Changes in medical providers, their staff, service providers and

797
00:42:43.940 --> 00:42:48.920
educational teams approaches, terminology, suggestions, and

798
00:42:48.940 --> 00:42:51.770
decision-making processes.

799
00:42:51.790 --> 00:42:54.390
And, changes or shifts in societal views.

800
00:42:54.410 --> 00:42:57.390
More positive views, and acknowledgment every person is not

801
00:42:57.410 --> 00:43:04.140
only capable of being, but actually is a productive member of society.

802
00:43:04.160 --> 00:43:07.710
So, did you notice a theme?

803
00:43:07.730 --> 00:43:08.210
Increase.

804
00:43:08.230 --> 00:43:09.990
Positive results.

805
00:43:10.010 --> 00:43:13.000
Assuming competence is a natural policy position has untold benefits

806
00:43:13.020 --> 00:43:15.390
for all.

807
00:43:15.410 --> 00:43:17.530
From micro to macro changes.

808
00:43:17.550 --> 00:43:21.530
Top down, bottom up simultaneously is likely the most productive way

809
00:43:21.550 --> 00:43:23.530
to create change efficiently.

810
00:43:23.550 --> 00:43:25.300
We should not wait for a trickle-down effect.

811
00:43:25.320 --> 00:43:28.300
Instead, utilize the theory that a large collective can create more

812
00:43:28.320 --> 00:43:34.290
significant change.

813
00:43:34.310 --> 00:43:37.590


814
00:43:37.610 --> 00:43:39.590
Ensuring policies, procedures, best practices, and personal values

815
00:43:39.610 --> 00:43:41.190
include assuming competence will automatically create sizing changes

816
00:43:41.210 --> 00:43:43.790
across all parts of society.

817
00:43:43.810 --> 00:43:45.990
Something seemingly small as one child or family can begin this

818
00:43:46.010 --> 00:43:48.590
ripple effect.

819
00:43:48.610 --> 00:43:50.190
Enough ripples become waves.

820
00:43:50.210 --> 00:43:52.590
Something not so easy to ignore.

821
00:43:52.610 --> 00:43:54.590
The same goes for the learning process for a child.

822
00:43:54.610 --> 00:43:57.590
One notice of their bid for communication or show of

823
00:43:57.610 --> 00:44:00.590
understanding increases the chances of it happening again.

824
00:44:00.610 --> 00:44:04.070
It is positive reinforcement.

825
00:44:04.090 --> 00:44:06.620
But I don't know what to do!

826
00:44:06.640 --> 00:44:07.820
Take a breath.

827
00:44:07.840 --> 00:44:10.220
It is OK not to know.

828
00:44:10.240 --> 00:44:12.220
Give yourself permission to acknowledge that you are not

829
00:44:12.240 --> 00:44:15.420
positive or know the answer at all.

830
00:44:15.440 --> 00:44:17.120
Do not shame yourself or the person asking.

831
00:44:17.140 --> 00:44:21.560
Beware of toxic positivity's and otherism.

832
00:44:21.580 --> 00:44:26.560
You can ask coworkers, your due diligence, and check oddball

833
00:44:26.580 --> 00:44:28.850
options including Reddit or Facebook.

834
00:44:28.870 --> 00:44:30.880
But most important, do not push away.

835
00:44:30.900 --> 00:44:34.420
Pull the individual or family towards you.

836
00:44:34.440 --> 00:44:37.420
Trusting relationships create safety for learning, trying new

837
00:44:37.440 --> 00:44:41.530
things, and feelings of being accepted and understood.

838
00:44:41.550 --> 00:44:45.530
So many times when I discussed assuming competence I hear a lot of

839
00:44:45.550 --> 00:44:48.330
feedback.

840
00:44:48.350 --> 00:44:50.130
How do I know if I'm doing it right?

841
00:44:50.150 --> 00:44:52.530
I don't always have the answers.

842
00:44:52.550 --> 00:44:54.930
Even after this talk I still do not know what to do.

843
00:44:54.950 --> 00:44:55.530
That is OK!

844
00:44:55.550 --> 00:44:57.930
You are not expected always know.

845
00:44:57.950 --> 00:44:59.330
You will never have all the answers.

846
00:44:59.350 --> 00:45:02.330
It might be something you of little to no knowledge of.

847
00:45:02.350 --> 00:45:07.330
You may not know what to do with this but you find out or respond

848
00:45:07.350 --> 00:45:10.530
accordingly.

849
00:45:10.550 --> 00:45:12.730
Take a deep, cleansing breath and give yourself permission to be

850
00:45:12.750 --> 00:45:15.930
honest in a kind way.

851
00:45:15.950 --> 00:45:18.530
If you give clear information on next steps you will take, when you

852
00:45:18.550 --> 00:45:20.930
get back to them and follow through, families will take you seriously

853
00:45:20.950 --> 00:45:24.330
and not question your abilities.

854
00:45:24.350 --> 00:45:26.730
That competence you are assuming in them will be reciprocated back to

855
00:45:26.750 --> 00:45:29.330
you.

856
00:45:29.350 --> 00:45:31.330
If you panic, fear, avoid or discredit the requester question

857
00:45:31.350 --> 00:45:34.330
you automatically move -- lose any level of professionalism.

858
00:45:34.350 --> 00:45:37.570
There is no shame in not knowing.

859
00:45:37.590 --> 00:45:41.570
We are all learning everyday but there can be intense shame or

860
00:45:41.590 --> 00:45:44.570
responding appropriately and that will influence who you are and how

861
00:45:44.590 --> 00:45:45.570
your back personally and professionally.

862
00:45:45.590 --> 00:45:49.010
You say some thing out of turn, collect yourself and respond.

863
00:45:49.030 --> 00:45:54.010
If you feel like a failure, it is OK to seek help from a mentor,

864
00:45:54.030 --> 00:45:55.700
therapist or coworker that you trust.

865
00:45:55.720 --> 00:46:00.290
No one is perfect.

866
00:46:00.310 --> 00:46:02.910
I encourage you to avoid falling into toxic positivity.

867
00:46:02.930 --> 00:46:04.920
Not everything is great all the time.

868
00:46:04.940 --> 00:46:07.520
Everything in life will not be OK and unfortunately, that has to be

869
00:46:07.540 --> 00:46:10.700
OK.

870
00:46:10.720 --> 00:46:12.700
Constantly turning a moment of vulnerability into saying

871
00:46:12.720 --> 00:46:16.700
everything will work itself out or happen for a reason – or any number

872
00:46:16.720 --> 00:46:21.660
of statements will sever a relationship you build.

873
00:46:21.680 --> 00:46:26.660
I promise you that the family will not feel safe or trusting.

874
00:46:26.680 --> 00:46:30.660
They will feel unheard, unseen and it may lead to feeling of rejection

875
00:46:30.680 --> 00:46:33.660
or isolation.

876
00:46:33.680 --> 00:46:37.660
In a moment of vulnerable you can validate how difficult things are.

877
00:46:37.680 --> 00:46:39.860
You cannot fix it and throwing around toxic positivity will not

878
00:46:39.880 --> 00:46:40.890
help.

879
00:46:40.910 --> 00:46:44.190
Be real and if you can help, make the seduction.

880
00:46:44.210 --> 00:46:48.190
If not, uncomfortable though it may be, you may have to sit with

881
00:46:48.210 --> 00:46:51.190
her pain.

882
00:46:51.210 --> 00:46:57.180
This work is not easy and deftly is not for the faint of heart.

883
00:46:57.200 --> 00:46:59.010


884
00:46:59.030 --> 00:47:05.020
Lastly I want to acknowledge the newer… This can come out in

885
00:47:05.040 --> 00:47:09.810
languages used to describe families or views to describe families.

886
00:47:09.830 --> 00:47:14.290
And influences 121 work all the way up to policies and procedures.

887
00:47:14.310 --> 00:47:17.430
Use discuss families is a collective using they regularly?

888
00:47:17.450 --> 00:47:20.430
Is and why don't they just do XYZ?

889
00:47:20.450 --> 00:47:25.430
I do not understand why they do not do what t we say--

890
00:47:25.450 --> 00:47:30.430
Why do they need more than one communication they are annoying and

891
00:47:30.450 --> 00:47:30.930
time-consuming.

892
00:47:30.950 --> 00:47:34.930
These are the nicer examples that have been stated to me in recent

893
00:47:34.950 --> 00:47:39.140
weeks and all I can say is, that does not sound so great to me.

894
00:47:39.160 --> 00:47:43.140
It would not feel great if I said why don't they, all the providers,

895
00:47:43.160 --> 00:47:47.910
get a clue there is more to family life and you?

896
00:47:47.930 --> 00:47:51.040
That sounds trite and terribly offensive to me.

897
00:47:51.060 --> 00:47:55.040
Avoiding other isms is being cautious of an office versus them

898
00:47:55.060 --> 00:47:59.040
mentality and I know it is hard -- us versus them

899
00:47:59.060 --> 00:48:04.040
Sometimes you will not agree with the actions of family takes and

900
00:48:04.060 --> 00:48:06.240
sometimes families will not agree with yours either, but by avoiding

901
00:48:06.260 --> 00:48:09.240
other isms and viewing the situations from a team standpoint

902
00:48:09.260 --> 00:48:12.960
you will feel a sense of camaraderie.

903
00:48:12.980 --> 00:48:14.560
You are assuming confidence.

904
00:48:14.580 --> 00:48:19.360
You are all on the same team because you have earned your spot.

905
00:48:19.380 --> 00:48:23.360
Lastly, try to look for the best in a situation even if you are

906
00:48:23.380 --> 00:48:25.630
uncomfortable or unsure.

907
00:48:25.650 --> 00:48:27.710
Ask yourself what you should do?

908
00:48:27.730 --> 00:48:29.050
What feels innately right?

909
00:48:29.070 --> 00:48:31.730
Believe you are capable of making an informed choice.

910
00:48:31.750 --> 00:48:34.730
Trust me children and family members know when you are faking it

911
00:48:34.750 --> 00:48:37.130
and when you're pushing us away.

912
00:48:37.150 --> 00:48:40.130
Me know when you actually see us, believe in our abilities and

913
00:48:40.150 --> 00:48:43.130
genuinely support us and we certainly know the difference

914
00:48:43.150 --> 00:48:49.030
between what feels funny and what feels real.

915
00:48:49.050 --> 00:48:52.030
Ask yourself, how can assuming confidence help you personally or

916
00:48:52.050 --> 00:48:53.030
professionally?

917
00:48:53.050 --> 00:48:56.030
Can you think of ways to incorporate assuming confidence

918
00:48:56.050 --> 00:48:57.210
into your life?

919
00:48:57.230 --> 00:49:01.210
How can talking about your emotions around shame, mistakes

920
00:49:01.230 --> 00:49:04.650
made and not assuming confidence assist you?

921
00:49:04.670 --> 00:49:08.650
Have you ever had an experience where someone in the position of

922
00:49:08.670 --> 00:49:10.250
power thought you were not capable or knowledgeable?

923
00:49:10.270 --> 00:49:12.050
Felt as though you are not seen or believed?

924
00:49:12.070 --> 00:49:14.760
How did you fill in that moment?

925
00:49:14.780 --> 00:49:18.760
An additional question to reflect upon, are you willing to allow

926
00:49:18.780 --> 00:49:21.760
others to take the lead in trust they know what is best for

927
00:49:21.780 --> 00:49:23.730
themselves or their family?

928
00:49:23.750 --> 00:49:26.730
Recognize that when you are assuming confidence you are

929
00:49:26.750 --> 00:49:29.130
partaking in both leading and following.

930
00:49:29.150 --> 00:49:32.130
Can you learn from your missteps and you better?

931
00:49:32.150 --> 00:49:35.130
Give yourself permission to say you are not shared and be willing

932
00:49:35.150 --> 00:49:37.810
to be vulnerable enough to be Tyson tough.

933
00:49:37.830 --> 00:49:41.810
Now you might be asking me, what is she talking about when she says

934
00:49:41.830 --> 00:49:44.890
Tyson tough?

935
00:49:44.910 --> 00:49:48.890
When Tyson was born we attempted to come up with a family slogan to

936
00:49:48.910 --> 00:49:50.690
rally our own emotions and rain in catastrophic thinking.

937
00:49:50.710 --> 00:49:54.570
Tyson taught this so he landed on.

938
00:49:54.590 --> 00:49:58.570
They thought we were bonkers for having a family slogan but it

939
00:49:58.590 --> 00:49:59.970
helped study the ship more than once.

940
00:49:59.990 --> 00:50:02.970
When I thought I was spiraling I took deep breaths and repeated it.

941
00:50:02.990 --> 00:50:04.970
Do you need to feel good?

942
00:50:04.990 --> 00:50:11.910
Do you need to feel… Do you need to feel good?

943
00:50:11.930 --> 00:50:14.910
Slogan that happens to include assuming confidence, when the

944
00:50:14.930 --> 00:50:16.910
centres even tougher times?

945
00:50:16.930 --> 00:50:20.910
Assume your confidence to find one that fits and use it as much as you

946
00:50:20.930 --> 00:50:24.110
need.

947
00:50:24.130 --> 00:50:25.710
Do not let it be embarrassing or shameful.

948
00:50:25.730 --> 00:50:28.110
If it works, it is great.

949
00:50:28.130 --> 00:50:31.110
I do not think you are bonkers for using any method that a state that

950
00:50:31.130 --> 00:50:32.410
helps you.

951
00:50:32.430 --> 00:50:33.410
--- Safe

952
00:50:33.430 --> 00:50:36.930
I want to thank you so much for sticking with me today.

953
00:50:36.950 --> 00:50:38.730
I recognize this was an emotionally and mentally involves

954
00:50:38.750 --> 00:50:40.120
session.

955
00:50:40.140 --> 00:50:44.120
I am incredibly grateful for your time and attention and choosing to

956
00:50:44.140 --> 00:50:48.120
be vulnerable with you all has been an another lesson in me assuming

957
00:50:48.140 --> 00:50:53.120
confidence and an audience being able to sit with this, me and with

958
00:50:53.140 --> 00:50:53.620
Tyson.

959
00:50:53.640 --> 00:50:55.220
Here you all are.

960
00:50:55.240 --> 00:50:58.220
After the question and answer session, at he will go to assume

961
00:50:58.240 --> 00:51:00.130
confidence with others and be Tyson tough.

962
00:51:00.150 --> 00:51:04.410
Thank you.

963
00:51:04.430 --> 00:51:04.910
MANDY

964
00:51:04.930 --> 00:51:05.410
MANDY

965
00:51:05.430 --> 00:51:05.910
MANDY

966
00:51:05.930 --> 00:51:07.310
MANDY JAY:  Thank you for a wonderful

967
00:51:07.330 --> 00:51:07.810
presentation..

968
00:51:07.830 --> 00:51:09.410
A lot to learn.

969
00:51:09.430 --> 00:51:13.410
I want to give you a chance to take a drink of water and for some

970
00:51:13.430 --> 00:51:15.220
questions to comment.

971
00:51:15.240 --> 00:51:19.220
We have some comments right now saying, wonderful thank you this is

972
00:51:19.240 --> 00:51:23.230
so valuable and important and all medical care providers should be

973
00:51:23.250 --> 00:51:29.210
required to watch.

974
00:51:29.230 --> 00:51:37.110


975
00:51:37.130 --> 00:51:41.440
Thank you so much for this opportunity I'm loving Tyson's mom.

976
00:51:41.460 --> 00:51:45.440
We also asked if this presentation is in Spanish and we do not have it

977
00:51:45.460 --> 00:51:49.570
available in Spanish.

978
00:51:49.590 --> 00:51:54.290
Sorry about that.

979
00:51:54.310 --> 00:52:00.280
The presentation will be recorded and online in the next few days at

980
00:52:00.300 --> 00:52:01.290


981
00:52:01.310 --> 00:52:06.290
infant hearing.rg, please share it with providers and families,

982
00:52:06.310 --> 00:52:10.290
everyone and happy to have that - infant hearing.org

983
00:52:10.310 --> 00:52:16.280
I will have a question while others may come in.

984
00:52:16.300 --> 00:52:18.860


985
00:52:18.880 --> 00:52:23.860
How do you share with parents who are starting out on this journey to

986
00:52:23.880 --> 00:52:26.980
assume confidence in themselves?

987
00:52:27.000 --> 00:52:30.980
A lot of this is talking about providers and how they should

988
00:52:31.000 --> 00:52:35.980
assume confidence in the family but if you are in the thick of it as

989
00:52:36.000 --> 00:52:41.970
mama or dad how do you, start?

990
00:52:41.990 --> 00:52:43.770


991
00:52:43.790 --> 00:52:44.270
MICHELLE

992
00:52:44.290 --> 00:52:44.770
MICHELLE

993
00:52:44.790 --> 00:52:46.370
MICHELLE JOHN:  I think that is a great

994
00:52:46.390 --> 00:52:47.560
question.

995
00:52:47.580 --> 00:52:51.560
I think unfortunately it starts inward, trying to believe that you

996
00:52:51.580 --> 00:52:55.560
have the ability and capability of being an appropriate parent, of

997
00:52:55.580 --> 00:53:02.140
having that innate sense of knowing what is right and wrong.

998
00:53:02.160 --> 00:53:04.700
Hopefully, some of these families have counsellors.

999
00:53:04.720 --> 00:53:08.760
There is that part of me talking.

1000
00:53:08.780 --> 00:53:11.760
I think being able to build up self-confidence and self-esteem is

1001
00:53:11.780 --> 00:53:13.170
so critical.

1002
00:53:13.190 --> 00:53:17.170
I do think, while it is very important to have that come from

1003
00:53:17.190 --> 00:53:22.160
inside I will say because so many families see so many medical and

1004
00:53:22.180 --> 00:53:25.160
educational service providers, that having those outside mirrors

1005
00:53:25.180 --> 00:53:27.370
reflecting back what you are trying to feel inside is really

1006
00:53:27.390 --> 00:53:29.560
empowering.

1007
00:53:29.580 --> 00:53:34.560
I do feel like it is a team effort, which most people do not love that

1008
00:53:34.580 --> 00:53:39.090
answer (Laughs) But it is.

1009
00:53:39.110 --> 00:53:39.590
MANDY

1010
00:53:39.610 --> 00:53:40.090
MANDY

1011
00:53:40.110 --> 00:53:40.890
  MANDY JAY:  Thinks Michelle.

1012
00:53:40.910 --> 00:53:43.890
We have a lot of thank you for this presentation, thanks for

1013
00:53:43.910 --> 00:53:47.870
sharing your journey and Tyson's life with us.

1014
00:53:47.890 --> 00:53:53.860
Powerful, we need the families to hear your story as well.

1015
00:53:53.880 --> 00:53:55.470


1016
00:53:55.490 --> 00:53:56.670
Not just providers.

1017
00:53:56.690 --> 00:53:57.170
MANDY

1018
00:53:57.190 --> 00:53:57.670
MANDY

1019
00:53:57.690 --> 00:53:58.170
MANDY

1020
00:53:58.190 --> 00:53:59.170
MANDY

1021
00:53:59.190 --> 00:54:01.170
    MANDY JAY:  I am assuming that is what that implies...

1022
00:54:01.190 --> 00:54:05.170
Assuming we all want to increase our competence and supporting

1023
00:54:05.190 --> 00:54:07.370
families.

1024
00:54:07.390 --> 00:54:09.970
I hope that all parents will see themselves as an expert on their

1025
00:54:09.990 --> 00:54:13.970
child, providers might be an expert in subject area and parent subject

1026
00:54:13.990 --> 00:54:17.970
area are their child so they are experts in that subject field.

1027
00:54:17.990 --> 00:54:22.990
Reminding parents they are the expert on their own child.

1028
00:54:23.010 --> 00:54:23.990
MICHELLE

1029
00:54:24.010 --> 00:54:24.990
MICHELLE

1030
00:54:25.010 --> 00:54:26.640
MICHELLE JOHN:  Absolutely.

1031
00:54:26.660 --> 00:54:27.140
MANDY

1032
00:54:27.160 --> 00:54:30.140
JAY:  Thank you so much for your vulnerable presentation of the

1033
00:54:30.160 --> 00:54:36.140
realness of raising her son so important on those days when Tyson

1034
00:54:36.160 --> 00:54:42.140
tough is waning what do you rely on to get back on track?

1035
00:54:42.160 --> 00:54:43.140
MICHELLE

1036
00:54:43.160 --> 00:54:43.640
MICHELLE

1037
00:54:43.660 --> 00:54:44.140
MICHELLE

1038
00:54:44.160 --> 00:54:48.140
JOHN:  I have had many months and years where that has not been the

1039
00:54:48.160 --> 00:54:50.570
most skill set of mine.

1040
00:54:50.590 --> 00:54:55.570
A lot of it is trying to remind myself that I need to get through

1041
00:54:55.590 --> 00:55:00.880
this minute, this our, this session and start small.

1042
00:55:00.900 --> 00:55:03.880
It is much like people say when they have a hoarded room, start

1043
00:55:03.900 --> 00:55:07.430
with one box.

1044
00:55:07.450 --> 00:55:11.430
I think sometimes people can get overwhelmed looking at the whole

1045
00:55:11.450 --> 00:55:11.930
picture.

1046
00:55:11.950 --> 00:55:13.330
How will I get through this week?

1047
00:55:13.350 --> 00:55:14.330
This whole day?

1048
00:55:14.350 --> 00:55:18.330
Sometimes you just have to say can you take a minute and splash water

1049
00:55:18.350 --> 00:55:20.160
on your face?

1050
00:55:20.180 --> 00:55:21.160
Can you regroup?

1051
00:55:21.180 --> 00:55:27.160
If you cannot you have had to learn, I have learned to reach out

1052
00:55:27.180 --> 00:55:33.320
to friends and maybe you have family, a counsellor or provider.

1053
00:55:33.340 --> 00:55:36.470
Whatever your support system may be, neighbours or other families.

1054
00:55:36.490 --> 00:55:41.470
It is so difficult to be vulnerable but it is really important because

1055
00:55:41.490 --> 00:55:44.470
that isolation can lead to a significant amount of depression

1056
00:55:44.490 --> 00:55:46.220
and anxiety.

1057
00:55:46.240 --> 00:55:51.220
I say from my own experience, on those harder days I have to find

1058
00:55:51.240 --> 00:55:57.250
the willpower to keep going.

1059
00:55:57.270 --> 00:55:59.860
Excuse my language, but sometimes it really sucks.

1060
00:55:59.880 --> 00:56:03.420
It really does and I will never deny that.

1061
00:56:03.440 --> 00:56:06.420
It is so critical that we put ourselves and our children and

1062
00:56:06.440 --> 00:56:11.430
families first in order to keep going.

1063
00:56:11.450 --> 00:56:11.930
MANDY

1064
00:56:11.950 --> 00:56:12.430
MANDY

1065
00:56:12.450 --> 00:56:14.030
MANDY JAY:  We have a few more questions

1066
00:56:14.050 --> 00:56:14.530
coming in.

1067
00:56:14.550 --> 00:56:17.330
I think this is a great one.

1068
00:56:17.350 --> 00:56:20.330
How do you know when you are using toxic positivity versus just

1069
00:56:20.350 --> 00:56:21.850
positivity?

1070
00:56:21.870 --> 00:56:22.350
MICHELLE

1071
00:56:22.370 --> 00:56:22.850
MICHELLE

1072
00:56:22.870 --> 00:56:24.050
MICHELLE JOHN:  That is a wonderful

1073
00:56:24.070 --> 00:56:24.550
question.

1074
00:56:24.570 --> 00:56:27.550
I know when I added this and I thought this might be tough for

1075
00:56:27.570 --> 00:56:30.950
people to hear.

1076
00:56:30.970 --> 00:56:33.150
I think it is important to be positive, it really is.

1077
00:56:33.170 --> 00:56:36.780
So I do not want to take that away.

1078
00:56:36.800 --> 00:56:40.690
But toxic positivity is no matter what is going to be fine.

1079
00:56:40.710 --> 00:56:44.690
Someone saying I do not know how I will pay the electric bill and then

1080
00:56:44.710 --> 00:56:46.770
saying it will be fine.

1081
00:56:46.790 --> 00:56:48.800
It works itself out.

1082
00:56:48.820 --> 00:56:49.770
It won't.

1083
00:56:49.790 --> 00:56:51.500
Looking positive can be very different.

1084
00:56:51.520 --> 00:56:55.500
We can work together to try to figure out how to pay your electric

1085
00:56:55.520 --> 00:56:59.080
bill or let's see if there are grants or programs available.

1086
00:56:59.100 --> 00:57:04.080
Certainly around children and their well-being and education, I

1087
00:57:04.100 --> 00:57:10.080
think there is being positive that we are going to try and see if we

1088
00:57:10.100 --> 00:57:13.950
can get little Joey to fill in the blank.

1089
00:57:13.970 --> 00:57:18.390
It is not a matter what everything happens for a reason.

1090
00:57:18.410 --> 00:57:20.390
Nobody wants to hear that.

1091
00:57:20.410 --> 00:57:23.390
Nobody wants to hear their child has autism for reason for God only

1092
00:57:23.410 --> 00:57:25.790
gives you what you can handle.

1093
00:57:25.810 --> 00:57:27.790
Nobody likes that statement either.

1094
00:57:27.810 --> 00:57:33.790
It is those clichés that are toxic, I think being positive is more

1095
00:57:33.810 --> 00:57:36.790
being supportive.

1096
00:57:36.810 --> 00:57:38.390
If that is helpful.

1097
00:57:38.410 --> 00:57:41.390
If it is not throw in the chat and say no try again (Laughs)

1098
00:57:41.410 --> 00:57:43.390
MANDY

1099
00:57:43.410 --> 00:57:44.390
MANDY

1100
00:57:44.410 --> 00:57:44.890
MANDY

1101
00:57:44.910 --> 00:57:45.890
JAY:  -- Thanks Michelle.

1102
00:57:45.910 --> 00:57:47.890
Are there support groups that you found meaningful to you

1103
00:57:47.910 --> 00:57:48.390
MICHELLE

1104
00:57:48.410 --> 00:57:50.390
Are there support groups that you found meaningful to you

1105
00:57:50.410 --> 00:57:50.890
MICHELLE

1106
00:57:50.910 --> 00:57:52.890
Are there support groups that you found meaningful to you

1107
00:57:52.910 --> 00:57:53.390
MICHELLE

1108
00:57:53.410 --> 00:57:55.390
Are there support groups that you found meaningful to you 

1109
00:57:55.410 --> 00:58:00.790
 Are there support groups that you found meaningful to you    MICHELLE JOHN:  It took me a long time to be willing to delve into that but yes.

1110
00:58:00.810 --> 00:58:03.190
Disability specific has been very helpful, hope for HIE is one for

1111
00:58:03.210 --> 00:58:04.390
children with brain injuries like Tyson.

1112
00:58:04.410 --> 00:58:08.390
At first I joined Facebook group and just watched and tried to feel

1113
00:58:08.410 --> 00:58:11.990
comfortable and take it in.

1114
00:58:12.010 --> 00:58:17.990
Yes I will say, I was both isolated because of where I live but also I

1115
00:58:18.010 --> 00:58:22.390
isolated myself for a long time.

1116
00:58:22.410 --> 00:58:26.390
Depending on where you live, there are in person support groups and

1117
00:58:26.410 --> 00:58:27.370
certainly online.

1118
00:58:27.390 --> 00:58:30.780
Zoom has become a life changer for some families.

1119
00:58:30.800 --> 00:58:34.780
Your state probably has apparent information Centre and you can also

1120
00:58:34.800 --> 00:58:39.390
reach out to them for resources.

1121
00:58:39.410 --> 00:58:39.890
MANDY

1122
00:58:39.910 --> 00:58:41.490
MANDY JAY:  We have a question about love

1123
00:58:41.510 --> 00:58:43.660
languages.

1124
00:58:43.680 --> 00:58:46.030
Do you know what Tyson's love languages?

1125
00:58:46.050 --> 00:58:49.540
What is his favourite way of showing he is being loved?

1126
00:58:49.560 --> 00:58:55.530
The person is reading for love languages in school book club.

1127
00:58:55.550 --> 00:58:58.030


1128
00:58:58.050 --> 00:58:58.530
MICHELLE

1129
00:58:58.550 --> 00:59:02.530
JOHN:  It used to be gifts because he likes looking at things and now

1130
00:59:02.550 --> 00:59:03.730
it is time.

1131
00:59:03.750 --> 00:59:09.730
He just loves people and spending time and having undivided attention

1132
00:59:09.750 --> 00:59:12.660
and people making of him.

1133
00:59:12.680 --> 00:59:14.260
It is his favourite.

1134
00:59:14.280 --> 00:59:18.260
He wants the attention no matter where he is and if he does not get

1135
00:59:18.280 --> 00:59:20.230
it every once in a while he will yell.

1136
00:59:20.250 --> 00:59:23.960
And I have to say, everyone knows Tyson has arrived moving on.

1137
00:59:23.980 --> 00:59:28.320
Time is a big one for him.

1138
00:59:28.340 --> 00:59:28.820
MANDY

1139
00:59:28.840 --> 00:59:29.320
MANDY

1140
00:59:29.340 --> 00:59:30.920
MANDY JAY:  We have time for one more

1141
00:59:30.940 --> 00:59:34.730
question before we wrap up.

1142
00:59:34.750 --> 00:59:36.730
Are there is some suggested training opportunities related to

1143
00:59:36.750 --> 00:59:38.070
toxic positivity?

1144
00:59:38.090 --> 00:59:39.070
MICHELLE

1145
00:59:39.090 --> 00:59:40.680
    MICHELLE JOHN:  That's a good one.

1146
00:59:40.700 --> 00:59:45.680
I do not know but I would be so thrilled to (indiscernible) (Laughs)

1147
00:59:45.700 --> 00:59:50.570
So you can email me and I can work on that.

1148
00:59:50.590 --> 00:59:55.570
I do not know honestly offhand but it is becoming a huge thing in

1149
00:59:55.590 --> 01:00:00.570
psychology and certainly picking up steam in education and service

1150
01:00:00.590 --> 01:00:02.770
providers and even in the medical field.

1151
01:00:02.790 --> 01:00:07.270
I am sure there are, I just do not know any off the top of my head.

1152
01:00:07.290 --> 01:00:07.770
MANDY

1153
01:00:07.790 --> 01:00:08.270
MANDY

1154
01:00:08.290 --> 01:00:09.470
MANDY JAY:  You are being encouraged

1155
01:00:09.490 --> 01:00:11.820
through chat to do it.

1156
01:00:11.840 --> 01:00:12.820
(LAUGHTER)

1157
01:00:12.840 --> 01:00:13.820
MANDY

1158
01:00:13.840 --> 01:00:14.820
MANDY

1159
01:00:14.840 --> 01:00:15.320
MANDY

1160
01:00:15.340 --> 01:00:18.320
JAY:  Again, thank you for your presentation, coming through the

1161
01:00:18.340 --> 01:00:18.820
chat.

1162
01:00:18.840 --> 01:00:21.910
Which she was available in other languages.

1163
01:00:21.930 --> 01:00:26.910
Thank you again for your time, do not forget to fill out the

1164
01:00:26.930 --> 01:00:30.500
evaluation and certificate at the end of this session.

1165
01:00:30.520 --> 01:00:33.530
I will just bring that up.

1166
01:00:33.550 --> 01:00:36.530
You so much Michelle, you are so appreciated and this presentation

1167
01:00:36.550 --> 01:00:39.490
has been wonderful.

1168
01:00:39.510 --> 01:00:43.490
Thanks to everyone who participated, especially Michelle and our

1169
01:00:43.510 --> 01:00:46.490
captioners and interpreters and all of the people behind the scene

1170
01:00:46.510 --> 01:00:48.330
making this work.

1171
01:00:48.350 --> 01:00:52.330
If you have any questions, Michelle's email is on the screen

1172
01:00:52.350 --> 01:00:54.130
and be sure to fill out the certificate of

1173
01:00:54.150 --> 01:00:56.360
attendance/evaluation form.

1174
01:00:56.380 --> 01:01:01.647
Thanks everybody and have a great day.