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  • \n
  • My family - \n3 teens, 1 preteen daughter\n
  • April 2000 - life took spiraling nose dive \ncrazy # visits to docs, therapists, -ologists (not gynocologist)\nthing called autism entered our family\nlack of typical social skills\ndevelopment of speech almost non-existent (18 months, no mama, dada, no words)\nin a way appeared deaf\nDiagnosis rocked my world\nRide home, suddenly overwhelmed with weight of my new reality\nout of body exper. - saw myself seated in front of doctor - nodding - trying to hear above the ROAR of emotions inside my head\nprognosis of never and always\nmonths went by - better understanding of what doc had been saying\ncrushed - dreams for my son stolen\nnot something that was going to go away - lifelong diagnosis - 24 hours a day, everyday\nyear - one of lowest and darkest in my life\nfound myself experiencing days - felt literally drowning\nbarely catching breath from yesterday, only to face another day\nSomething I didn’t anticipate - but came to learn - increasingly difficult for our family to fit in anywhere - belong to any type of community\nplaygrounds, bday parties, school - didn’t fit in\nnew reality - church became a luxury\nnothing else in life was like I thought - but surely God and His people would still be there\nFor a while this is what my Sunday would look like - \nGet up and struggle to get Jared (and everyone else ready) little longer with child with disability\nbut we do it - go to church - drop off my child\n15 min later asked to come and get him - can’t handle him, don’t have training for that, can take him with you, maybe there is another church\nAs a child of a children’s pastor - grew up in church - been a Jesus follower for many, many years\nAnd I began struggling with ALL of this\nI wanted to walk away from church, Jesus, Christians, ALL of it\nEasier to stay home, than to go to a church\nHave you ever thought what would happen, how you would feel if you were asked to leave a church because of your child?\nKept asking... is this what Jesus, the Jesus I thought I knew would have done?\nWould he have said, GO AWAY - can’t handle that\nThese people claimed they loved Jesus and followed his ways - but they didn’t show that to me -deep hurt\nNot just that church -attempted many, many churches\nNot just my story - story of most families I speak to that have attempted to attend a church\n\n\n\n
  • 20%\n45 million people\nEveryone of those people come with a family\nEstimate that 95% of people with disabilities are unchurched\n
  • 1 - maybe as high as 85%\nlots of single parents\n2 - not covered by insurance\n3 - difficult time adjust / belonging\n4 - in order to feel you are not alone\nDoes God / Scripture address this at all?\n
  • In Galatians 3 - Paul says\nPaul saying - no one is left out of the Gospel\nRacial, economic, gender barriers and ALL other inequalities SHOULD NOT exist in the kingdom J came to usher in\nCentral part of Good news\nWhat about Jesus?\n\n
  • Luke 14:12\nA reading of the gospel accounts of J, puts center stage - ordinary people, poor people, disreputable people, and disabled people\nNever to embarrass or shame - never as a spectacle. Compassionate - not condescending\nReligious people were bothered that J spent time with “those” people\nJ over and over again chooses to spend time with those that religion shuns\nSo what would our churches - our youth ministries look like if we took the words of God and the words of Jesus literally?\nGive you some specific info on autism and then some practical and concrete ways you can open the doors in your faith community / youth ministry\n
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  • A is a spectrum disorder - that affects individuals differently.\nThe characteristics of autism can present themselves in a wide variety of combos\nfrom mild to severe - very different\nincludes autism, asperger’s, childhood disintegrative disorder, rett’s disorder, pdd (pdd-nos)\n
  • According to the latest numbers from the CDC\n\nFastest growing developmental (present at birth) disability\n4 to 5 times more common in boys\n
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  • Language spectrum - \nsome never speak, noises, sign language, communication device, ipad apps, pix symbols, speech)\nvoice volume, rhythm, intonation may be different\nnot able to read “in head”\nmay be “overly honest” in what they say (Jack music) - bad breath, ugly sweater - no filter\nvery concrete language \n
  • Social difficulties\n2 responses (isolation or plow right in the middle)\nbecause analyzing person’s face and body language is difficult - causes friendship problems - can’t read common social cues - space issues\ndifficulty with eye contact - may appear to be ignoring when you talk to them\n
  • describes repetitive behaviors that teens with autism will do to soothe themselves -\nsee in stressful situations to CALM \nrocking, tapping table of objects, rubbing an object -- sense of control\nimportant to recognize - hitting table may indicate stress not trying to be obnoxious\n
  • often amazed by one particular subject\nmay have studied, read, watched\nfind they talk about it all the time - EXPERT\ncars, vacuums\n\n
  • Teens going through lots of changes and range of emotions - most teens have difficulty managing these\nGet overstimulated - over excited - over anxious may act out\ncry, scream, hit, laugh uncontrollably - teen equivalent to temper tantrum (I’m tired don’t know how to express) I’m stressed out and don’t know how to express\nmany can’t communicate emotions like anger, frustration, hurt in socially acceptable ways - so end up expressing themselves in socially inappropriate ways\nIf seems directed at you - don’t take it personal\n\n
  • World that doesn’t function like they do - chaos - looking for control\nLike to do things exactly the same way at the same time each day\nWill not / can not make spontaneous decisions regarding their schedule \nuncomfortable with sudden changes\nChanges to routine and schedule source of stress that could lead to acting out\n
  • 1 - completely integrated in whatever there is for their age group, may have support\n2 - separate space, bring those with disabilities (neurotypical) in to space with them, may have support\n3 - self-contained = only those with disabilities and leader/support\n4 - para church = YL Capernaum\nCan have variety \nDo need more volunteers to help support (pull different source)\nAND great way for teens to serve others - go beyond consumerism and gain so much more\n
  • 1. call, email, meet\n2. ask questions - how can we be supportive of your teen’s needs\n3. \n
  • 4. ask what they are\n5. medical emergencies / procedures are frequent\nloss of healthcare benefits \nloss of caretaking services\nthese teens can’t stay home by themselves\nproblems at school and home common\non going worry - How will I continue to care for my child? Who will care for / love my child when I am not here (pravalent when child is in teen years)\n6. Care taking so parents can attend church functions - sunday morning participation\n
  • Word of mouth that your church cares\nGO\n1. offer support there\n2. volunteer, donate supplies\n3. volunteer, host fun activities (dance, easter egg hunt)\n4. support groups (local coffee shop)\n5. assist in attending school meetings, health services, state systems, court guardianship meetings\n6. U of Washington Autism Center, Seattle Autism Guild, autism society\n\n
  • Remember that they are a PERSON first - not a disability\nassume competence (assume they understand everything you say)\nneed to know things like - are they are runner? allergies? bathroom? things that set off behaviors? things they like? things that help calm? emergency meds, seizures?\ncall parents - set up meeting\npositively communicate that you want to know about their teen and how to best meet his/her needs - language makes all the difference\nASK permission to share\n
  • not just youth leaders (who else needs to know? lead pastor, depends of how youth set up)\nStory SUE - some maybe hearing my friend sue - mom and dad gave permission to tell she has autism - sometimes sounds or itchy tags in clothing really bother her, glad she is in my cheering section today \nremember this is confidential info - ASK permission to share so to help JOE love God and others - \nOne page info - use positive and honest language\nshare with family and when appropriate teen FIRST\n\n2 - peers\nhelp them learn and accept individual as part of the group\npresent info with teen with autism present -communicates can openly discuss\nletter home - get permission\ngreat way to serve, teach lesson what God has to say about others that are different - chance to live that out\nencourage friendships\nkeep communicating - \n\n3) share info with teen with autism - info to help them succeed - when you don’t give your friends a chance to talk - makes them sad - take turns with them\nACCURATE info stated positively and honestly is POWERFUL - ie sensitive to loud noise, middle of worship microphone squeals - teen covers ears and screams - not labeled problem child, bad parents\n\n
  • hightened senses - smell, hearing,(headphones might be needed at times) taste, touch, sight (lights)\nReset area - to reset senses - prayer room, cry room, some space with limited sounds, few people, few decorations (even a bathroom)\nsenses are overwhelmed remove sensory input\nLet teen know the place is available\ncould even have a small box of calming items (fidget toy, rocking chair) kept there \nbreak time - not time out\nnot punishment - anxiety is seen (moving a lot, high pitch noises, etc.) ask “do you need a break” - under supervision\n2 - eye contact - visual input often = no auditory input\n3 - touch - person is upset - not the time to talk to, look at, or touch them - wait until calm\n\n
  • Rely on to process the day and control the chaos of the world\nprinted order of service (have one for sound team, worship team, use that)\nsticky notes (to do, done)\nlist (words or pixs) cross off\nipad, itouch apps\n\n
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  • concrete language\nI’ll see you in a while versus see you in 30 mins, 2 weeks\nStory - JOE - social rules around phone use - many phone calls within hour - ended conversation with talk to you later - I mean sometime - he called back in 10 minutes - cycle - now say call again tomorrow\nTime Timer\nor verbal countdown - 5 mins, 2 mins, 1 min\nif sudden/unexpected change - use written or spoken word to indicate altered plan (I need to alter this - “new and improved”\n \n
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  • story - under the weather\ndirections one step at a time - document out in words or pixs if needed\nNIrV bible helpful - 4th grade reading level\nuse visuals to reinforce what you say - think in pixs - use writing or drawing\nStory - teen asking when is mom coming over and over again - write on paper - point to when they ask\nVisuals help with behaviors \nwritten rules (group time, worship time, trips)\nRemember if visuals say one thing and you say something else - visual most likely rules (end time)\nIf visual is not working - evaluate why - teen not participating in worship - using a pix to represent worship and teen was not in pix - very concrete\n\n
  • a part of the whole\nvaluable, worthy\nnot just a taker - giver as well\n\n
  • may not be able to control or change it on command\nmeans something - look beyond behavior to the cause\n\n
  • Asked you - have you ever imagined what it would be like to be asked to leave a church because of your child?\nNow ask you....\nImagine finding a place of faith that welcomes your teen and YOU - place where someone says we hope he/she comes back\nA place full of HOPE\nImagine the lifes you can affect\nImagine how your life can be affected\n\n\n
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  • Autism

    2. 2. AUTISM
    3. 3. DID YOU KNOW....1 in 5 people in the U.S. have a disability
    4. 4. IN FAMILIES AFFECTED BY DISABILITIES High divorce rate Extra financial stress Sibling issues Networking is essential Child-sitters are a life-saverNightmare = Who will take care of / love my child if something happens to me?
    5. 5. “You are all sons of God through faith in Christ Jesus for allof you who were baptized into Christ have clothed yourselfwith Christ. There is neither Jew nor Greek, slave nor free, male nor female, for you are all one in Christ Jesus.”
    6. 6. Then Jesus said to his host, “When you give a luncheon or dinner, do not invite your friends, your brothers or sisters, your relatives, or your rich neighbors; if you do,they may invite you back and so you will be repaid. But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous.” Luke 14:12
    7. 7. AUTISMA brain disorder that affects a person’s ability to: communicate, reason, interact with others.
    8. 8. AUTISMAffects 1 in 88 children in the US Affects 1 in 54 boys in the US
    9. 9. AUTISM1/3 of children with autism develop seizures by adolescence Only 56% of students with autism complete high school
    10. 10. AUTISM21% of adults with disabilities participate to some degree in the labor forceAnnual cost of autism in the U.S. is $126 million (more than triple from six years ago)
    11. 11. AUTISMAutism knows NO racial, ethnic or social boundaries. Family income, lifestyle and educational levels do not affect the chance of autism’s occurrence. The incidence of autism is consistent around the globe.
    12. 12. AUTISMThere is NO CURE for autism.
    14. 14. COMMON TEENAGECHARACTERISTICS OF AUTISM Having little or no friends
    16. 16. COMMON TEENAGECHARACTERISTICS OF AUTISM Preoccupation with one topic
    19. 19. HOW DOES IT LOOK? 1. Full Inclusion 2. Reverse Inclusion 3. Self - Contained 4. Para-church organizations
    20. 20. OPEN UP TO THE FAMILY 1. Get to know the family 2. Become familiar with their needs3. Develop an understanding for their daily struggles
    21. 21. OPEN UP TO THE FAMILY 4. Pray specifically for their needs 5. Be there in times of crisis6. Find ways for the family to become an integral part of the church community
    22. 22. OPEN UP TO THE FAMILY 7. Outreach to special needs community - homes - schools - residential facilities - public places - mentorships- partnerships (disability organizations, churches)
    23. 23. OPEN UP TO THETEEN WITH AUTISM1. Gather info about the person ASSUME COMPETENCE
    24. 24. OPEN UP TO THE TEEN WITH AUTISM2. Share info with others that need to know - leaders - peers positive and honestly always with permission
    25. 25. OPEN UP TO THETEEN WITH AUTISM 3. Monitor sensory input - reset area (break time) - don’t insist on eye contact - know the effects of touch
    26. 26. OPEN UP TO THETEEN WITH AUTISM 3. Make routines comfortable
    27. 27. OPEN UP TO THETEEN WITH AUTISM 4. Measure time concretely
    28. 28. OPEN UP TO THETEEN WITH AUTISM 5. Close the communication gap - concrete language- sequenced directions (one at a time) - use visuals
    29. 29. OPEN UP TO THETEEN WITH AUTISM 6. See where they can serve
    30. 30. OPEN UP TO THE TEEN WITH AUTISM7. Remember BEHAVIOR is communication
    31. 31. OPEN UP HOPE
    32. 32. Q&A Contact Info: Tammy Burns Pastor of Family Ministries The Ridge Faith