On the Road With Autism

My journey of discovery. I welcome your comments!



Life can be challenging for families with children on the spectrum. Parents are always on the internet looking for the latest & greatest interventions, scheduling their son or daughter for every kind of afterschool activity to help them develop & may never see the most obvious intervention!

COOKING

Can Cooking Really Help Our Children Learn?

           Cooking is A Central task for Life

           Cooking connects us to our families

           Cooking connects us to our culture

           Cooking is a social activity

           Cooking is a physical activity

           Cooking involves problem solving

           Cooking is a sensory experience

           Cooking is a leisure activity

Well, Cooking Builds skills in our Children!

           Cooking involves planning

           Cooking involves organization

           Cooking develops focus & attention

           Cooking improves self-esteem

           Cooking improves balance & coordination

           Cooking improves strength & movement

           Cooking builds social skills

           Cooking builds comprehension

           Cooking can involve team work

           Cooking teaches safety

           Cooking teaches equipment use

           Cooking develops taste & smell

           Cooking teaches nutritional awareness

           Cooking teaches reading

           Cooking teaches math concepts

           Cooking incorporates communication & expands language

            

It Begins With:

           Planning a meal or snack

           Can include making a shopping list

           Going shopping & locating ingredients

           Exchanging money & making change

           Using cooking utensils & equipment

           Reading recipes

           Understanding measurement

           Learning to stir, chop, squeeze, pound, roll, cut, peel

           Involves pouring, filling, flipping, scooping, opening, greasing, spreading (motor & comprehension task)

           Cooking helps students build independence

           Cooking expands our students social awareness and connections (cooking classes, potlucks, holiday experiences, gift giving, sharing)

           Cooking teaches manners

           Cooking provides opportunities to take turns

           Cooking exposes children to new & different foods

           Cooking then provides reading opportunities

           Cooking develops organizing & planning and following sequence skills

           Cooking develops patience and accepting & delay in gratification

           When the cooking process is completed & the recipe finished & the meal shared, there is the clean up

           Cooking provides opportunities for our children to learn clean up skills & follow the dishwashing processes, kitchen cleanup process & meal table clean up

           Cooking Needs to Be Structured to Maximize its Effectiveness

           Possible Lesson Plans for Teachers!!

           Learning the Food Pyramid & Food Groups

           Reading and Understanding Food Labels

           Reading a Menu and Making Healthy choices

           Using money to budget a meal at a restaurant

           Navigating the grocery store: finding various items and charting where found inside the store

           Teach students to understand the various food groups & which foods fall within each category-using visual aids

           Teach students that foods have different nutritive values (some are ‘healthier’ than others)

           Help students understand they can make food choices & promote healthy food choices at school, home & community

           Promote functional life skill development by helping students learn to read a menu, make choices, & budget money

           Help promote independence by teaching students how to navigate the grocery store-both spatially & categorically

           Teach students about portion control when eating & what constitutes a ‘healthy plate’

           Cooking Improves motor planning, focus and self-esteem

           Yep it is an amazing education, therapeutic and life skill tool and it doesn’t require hiring a specialist to implement.

           Try it!!!

SAD, CONCERNED ABOUT the EDUCATION for Students with AUTISM

I am having a hard time understanding why we are not doing a better job at educating and preparing children with Autism when we understand more about how these children learn than ever before, have more support curriculums and choices of interventions than ever before.

Why is it so hard for the education field to design & implement school programs for children with Autism? Why are these children still suspended from schools, parents forced to stop work so they can pick their son or daughter up at school when things aren’t going well or sent to private schools outside their districts so that families feel the lack of belonging in their own communities? Why are private schools not able to offer a full variety of educational practices? Why are these children also leaving the schools unprepared for their next steps?

We have Universities who have created credential programs that say they address Autism. The Occupational Therapy Departments are talking about Autism. The Speech & Language Departments are talking about Autism & of course the psychology departments are invested in Autism. We have created a huge industry of BCBA personnel who say they can support families and schools. The bookshelves are lined with information, workshops are presented all over the state of California & out of state. Autism Speaks has made it National Known that 1 in 68 children are born with Autism.

Ted talks hit the social media across the world on Autism. Movies have been released on autism. Plays are presented on Autism. Every newspaper imaginable has posted an article on autism.

What is it? Why is it that I still get calls from desperate parents, crying? Why is it I still walk into classrooms & see a stapled pile of dittos being placed in front of these students as the only intervention for learning math, language arts, science or history & the teachers wondering what they can do to keep them engaged? How can a student get sent to a private school at the cost of $60,000 to $80,000 a year & still not be prepared for the next step?

Why does it have to cost so much money to figure out how to help our students communicate, take care of their daily needs, learn to their potential, find a way to develop friends and gain control over their sensory & feeling differences?

Are we spending more money on research instead of educating & training teachers, therapists & families? Has our education system made teaching so difficult that the idea of teaching no longer is exciting to our college graduates? Are we not accessing effective interventions? Are we hiring just because someone has a license & not the education or experience due to shortages? Are our budgets so tight that we cannot provide support for the teachers once they are in these classrooms? Are we expecting our teachers to handle more students than they can at one time? Do we have to put more students in a classroom that is truly therapeutic just to make our payrolls?

Are our Universities failing? When was the last time a teacher at the college spent time in the classroom managing a child with autism? What materials are they teaching from? Does each university provide effective mentoring? How can a student take a weekend credentialing program in Autism & be prepared? How can students just take classes on line & be prepared? What have we sacrificed for quickness & media ability?  Are the training programs truly effective? Why is it that tuition at colleges is so high, loans are needed? What have our graduate students received for $40,000 a year!!!!

I can’t help thinking that it is all of the above & that we need to take a careful look at what’s happening & find ways to repair.

We have the knowledge. We have the technology. Certainly a great deal of money is being spent.

Perhaps all this Mindfulness infusion into our culture needs to be infused into our administration at every level (credentialing departments, universities, private & public schools, agencies, centers, clinics, government) & allow the time to find real solutions instead of plugging holes in the dam.

Perhaps we need to get away from our screens, come face to face with each other, turn the systems upside down & actually see where they are working & where they are not working. Perhaps we need to stop competing & do more collaborating/sharing between districts, universities, centers, schools & clinics. Perhaps we need to look at how the salaries have sky rocked just like home prices did, leaving more people without possibilities.  

Perhaps everyone needs to take some long breaths instead of holding them & hoping to survive the day.

I started in this field when we knew very little but it was a time when those who cared about Autism came together to find solutions. It is now 40 years later & I am wondering what has happened!!!

What do you think happened? What are you willing to do about it?

First Breathe deeply.

Thought I would share

Some Tips for Parents of Children with ASD

  • Life as you knew it has changed
  • Along with your child’s gifts and talents you will have to support his/her learning challenges
  • Your own family values, beliefs, hopes and desires will lay the foundation for your actions
  • You will need to be an informed leader of a lifelong team
  • You will need to create this lifelong team
  • You will need to lead this lifelong team
  • Parents are
  • Responsible for the support and positive development of their children
  • They accept the child for who he/she is and find strengths and develop them
  • They guide (from their own experiences)
  • They coach (to build skills)
  • They mentor (to teach)
  • Offer wisdom
  • Offer safety
  • They encourage mind, body and spiritual well being
  • They celebrate the small step by step successes of their children
  • Families MUST
  • Learn everything about their child’s learning challenges
  • Become well informed about current state of the art interventions and strategies that will help support growth
  • Should learn how to evaluate the progress of an intervention and be ready to STOP it if it isn’t bringing about positive change
  • Need to learn how to develop independence in their child EARLY
  • Re-think their role as mother and father and add on teacher!!!
  • Stop doing and thinking for their child and instead build
  • Communication skills
  • Skills of daily living
  • Social Skills
  • Set Rules
  • Set boundaries
  • Set expectations
  • Teach other family members to become mentors, coaches and teachers
  • Teach home care-providers to become teachers not Nannies & Butlers!!!
  • Start early to help your child understand that they need to
  • Communicate, Socialize and participate in the family
  • The Child Must Learn
  • To dress themselves
  • Feed themselves
  • Shop for themselves
  • Cook for themselves
  • Maintain their own clean spaces
  • Maintain good hygiene on their own
  • Problem solve
  • Parents Must
  • Stop thinking and doing everything for their child including
  • Communicating
  • The longer the parent does it all, the harder it will become to encourage independence and success in
  • Home, School and the Community
  • When Parents Do it For them
  • The child never learns to solve a problem
  • Test out solutions
  • Find Answers
  • Develop plans to implement solutions
  • In the end they will ALWAYS need someone to Think and Plan and Do for them
  • How?
  • Start early (now)
  • Start small
  • Build gradually
  • Consider their current skill levels
  • Be Patient
  • Be Calm
  • Celebrate each small step towards independence
  • Acknowledge each and every communication intention: what they look at, what they point to, sounds they make, taking you to what they want and then EXPAND from there
  • Play with them and teach them to accept you as a play partner. Join them in their preferred activities and then EXPAND from there
  • Identify jobs they can help with in the home (putting away toys, putting clothes in drawers, putting dirty clothes in laundry area, helping to carry things in the store and them putting them away after shopping, empting trash, setting the table, making a snack and packing their lunch for school)
  • Teach them Daily living skills and require them to participate more and more instead of you doing it all.
  • Hand washing, tooth brushing, bathing, dressing, hair brushing, using utensils, using a napkin, pouring, stirring are some places to start
  • Expose them to community activities (parks, family celebrations, temple, stores, museums, art galleries, music events)
  • Start with short visits and with places of THEIR interests
  • Use visual supports in form of visual stories and visual schedules to show them how it will be in those places
  • When Parents
  • Expose their children to the community then the child engages in learning.
  • They learn social skills, language expression and comprehension, motor planning and problem solving.
  • Parenting is Complex
  • Each parent has to give up something when it comes to seeing that their son or daughter with a special learning challenge LEARNS
  • Each parent becomes a part of not only providing a safe environment in which to live but a TEACHING ENVIRONMENT in which to LEARN
  • So, parents need to sleep well, eat well, connect with each and form support groups, share ideas, find time to do the things they enjoy too!
  • Parents also need to be there for the other siblings in the family and encourage their unique strengths and talents

How Can We Start To Accommodate Children with ASD in typical Classrooms?

Just wanted to offer some first steps for regular education teachers…Here are some ideas for accommodating & modifying

Accommodate: What does that mean?

  • To make an adaption
  • To make an adjustment
  • To compromise
  • To re-vision
  • To re-shape
  • To Shift our thinking
  • To Transform

Modify: What does that mean?

  • To change, correct, convert
  • To refit, repair or reconstruct
  • To remodel

WHAT Do We Modify or Accommodate?

  • The Environment/Setting
  • Materials
  • Content of lessons and activities
  • Perhaps people in the classroom
  • Perhaps the amount of time given
  • Perhaps the amount of work given

The Environment/Setting

  • Space between desks, tables
  • Less clutter
  • A special seat closer or further away from specific people/teacher
  • Design a quiet corner
  • Reduce Visual distractions (walls, boards)
  • Some students need a study carrel
  • Some students may need a special chair or desks

   Time Management

  • Shorter sessions
  • Frequent breaks
  • Extended time for some projects
  • Shorten tests
  • Shorten assignments

Materials & Equipment          

  • Books on tape
  • Check Lists / Flash Cards
  • Number Lines /Calculators
  • Computers
  • Magnification Special Paper
  • Manipulatives
  • Tape recorder

Other Supports:

  • A student buddy to read to them
  • A note taker to take notes for them
  • More examples/more practice with each lesson

Specific Modifications for Different Challenges

  • Visual Challenges:
  • Larger print
  • Magnification
  • Sitting closer to the board
  • Auditory Challenges:
  • Hearing aids
  • Taping sessions/listen later/Books on Tape
  • Seat Position/ Keep room quiet
  • Printed Instructions /Teacher gives outlines of assignments
  • Teacher repeats directions more than one time
  • Teacher makes sure to face student
  • Strategies for Everyone
  • Highlighting important key words and passages
  • Avoid window seats for those who are very distracted
  • Students could wear ear plugs or headsets if noise bothers them
  • Offer test taking in a quiet room or in another space
  • Special pens, pencils with grips, scissors
  • Special seat cushions for students
  • More Strategies
  • Teach around interests/ Use favorite people, foods, toys, activities to read about
  • Use lots of repetition with new materials
  • Leave space between words
  • Make materials funny or silly
  • Final Thoughts 
  • BE PATIENT
  • LEARN TO SIMPLIFY
  • THEN LEARN TO CELEBRATE SMALL STEPS TOWARDS SUCCESS  

 

  • When My Worries Get Too Big by Dunn Buron is a great curriculum to use with children with Autism to help them handle their anxiety
  • Create a feeling chart (1, 2, 3, 4, 5) for each student
  • When I am at 1: I am feeling good, thinking about my favorite things and I am relaxed and ready to work
  • When I am at 2: I am still feeling okay and I know what's happening and I don’t really have any worries
  • When I am at 3: I might be getting a little nervous and something might be bothering me
  • When I am at 4: Something is bothering me and I am getting upset
  • When I am a 5: I am losing control
  • Now make a chart that shows what a student can do when they are at certain numbers (each student might come up with what they need)
  • To keep me at 1: Let me know I am doing really well. Help me feel proud
  • To keep me at 2: Give me clear expectations, make things manageable
  • When I get to 3: I am worried, try and find out what might help me (clarify, do something I really like, go to a quiet space)
  • When I get to 4: Deep breathing, thinking about happy things I can do later, take a walk, get something I need, get a drink
  • When I am at a five: It’s RED ALERT: I need to be in a safe place with no demands but calming activities. Give me time alone
  • When Our Children Learn:
  • 1) What behaviors are expected of them in different situations and how their behaviors affect others
  • 2) What behaviors are not appropriate and are considered unexpected and how they affect others in another way.
  • 3) Then they can make better choices if they are motivated by what others think and feel about them
  • Example: In a library I have to use a quiet voice, treat books nicely and sit in my chair. This makes my teacher happy and then I get to look at books I like J. Or I can scream in the library and throw my books on the floor. This will make my teacher very disappointed and she will make me leave and then I will NOT get to look at the books I want. L
  • Example: When my classmates and I do an art activity together and I start making loud noises and throw my paper and pencils on the floor, they look at me and then move away and don’t want to be with me. This makes me sad. BUT, when I do the art activity too and use a nice voice, they smile at me and stay at my table and be with me. This makes me Happy
  • So teachers can map out these examples for the student. This is called Social Behavior Mapping by Michelle Garcia Winner
  •  If students are motivated to please others by doing what is expected they will begin to change their inappropriate behaviors
  • Emotions can be controlled when they feel less stressed
  • Room is quiet/ Schedule is posted
  • 2) Assignments are short and you do some pre-teaching of parts
  • 3) They know when the activity begins and ends
  • 4) Directions are simple and understood
  • 5) Teach them to shift their attention
  • 6) Working on memory activities
  • 7) Teach flexibility (more ways to solve problems
  • 8) Teach them how to organize their papers, desks, assignments
  • 9) Teach them how to plan completing project
  • WHEN WE SUPPORT THEIR INDIVIDUAL LEARNING DIFFERENCES

 THEN WE GET THE BEST FROM THEM

 

 

Todays blog is about how we can help children with Autism decrease their anxieties so they can do their best learing.

When students are happy, calm and focused they do their best learning

So How Do We That????

  • Keep the learning environment calm & predictable (consistent)
  • Establish daily structure ( with schedules)
  • Make sure students understand your expectations of them (simple, clear, manageable)
  • Support their challenges (sensory, physical, cognitive, communication)
  • Make sure they have an effective way to express/communicate their needs, wants, feelings, dislikes
  • Keep your directions short and deliver with a calm voice
  • Plan lessons that are fun, meaningful & accommodating to their level
  • Make sure they are getting a good night’s rest & are eating well
  • Make sure their medical needs are addressed
  • Provide breaks during the day
  • Create a quiet, clam space for them to retreat to when overwhelmed
  • If We Want our Students to have Self-Control;
  • They have to be able to integrate sensory information, their emotions & their thinking
  • They have to have the ability to make sense of sensory information coming into them & then organize it and be able to act on it. So assess noises, lights, smells, movement in their environment
  • Loud noises (alarms, people talking, background noises)
  • Bright lights & all visual things in their learning space
  • Tactile information (people touching them)
  • Textures (clothing, art projects)
  • Smells (cooking, perfumes, incense)
  • Address Sensory Challenges:
  • 1) Lower or turn off lights/cover windows if needed
  • 2) Keep distractions to a minimum/don’t have people walking in and out all the time
  • 3) Less is better in the room
  • 4) Use calm voices
  • 5) Turn off background noises
  • 6) Provide good space between students
  • 7) Make sure perfumes & fragrances are kept light
  • 8) Keep room structured , support their seating,
  • They Have To Be Able to Integrate;
  • Their thoughts and actions
  • They have to be able to pay attention to more than one activity at time occurring In the environment
  • They have to be able to plan their actions when people request or ask them to do something
  • They have to remember (Hold directions in their minds, recall past information)
  • Process words they hear
  • So They Can Problem Solve
  • Teach estimation: Guessing how long it takes to do things
  • 2) Set up stations and have several activities going on at once and have them move every 20 minutes
  • 3) Play games that ask them to follow the leader
  • 4) Give them problems to solve (what do we need for an art project)
  • 5) Give a direction and ask them to repeat it back before doing
  • 6) Play memory games
  • They Have to Learn to Control Their Emotions By:
  • Really understanding how big or little their problem is
  • Really understanding other people’s perspectives (ideas, feelings) & how their actions affect others
  •    * and then find and use solutions to create positive outcomes*
  • Create lessons around big problems & little problems & how they can be solved
  • Pencil needing to be sharpened? (Big/little) to them
  • Someone crying? (big or little) to them
  • Hungry? (big or little)
  • Bathroom need? (Big or little)
  • Injury to self? (Big or Little problem)
  • Forgot their lunch? (Big or little)
  • Not understanding? (Big or little)
  • TEACH THEM To recognize FEELINGS L J next
  • TEACH THEM WHAT EACH OF THESE FEELINGs LOOKs LIKE
  • A) Moving slow, feeling sick, feeling sad, being bored
  • B) Happy, calm, focused
  • C) Frustrated, overwhelmed, silly, wiggly, excited, worried, anxious,
  •  D) surprised
  •    E) Out of control anger and aggression
  • Then (Define them, draw them, take pictures of them, label them)
  • IDENTIFY Triggers to these Challenging Feelings next
  • What causes them to be frustrated, overwhelmed, silly, wiggly, excited, worried, anxious, surprised
  • Angry and aggressive
  • THEN IDENTIFY WHAT ACTIONS CAN HELP CALM THEM
  • Have the child make a list of what makes him/her anxious, worried, angry, fearful
  • Too much noise
  • Not understanding what I am supposed to do
  • Smells, being touched
  • Seizures, hunger, tired
  • Not knowing what is next
  • Being too close to someone
  • Triggers are Different for everyone
  • Then Make a Plan for What to do when each occurs
  • When there is too much noise: I can ask to leave & take a break
  • When I am tired I can let my teacher know & maybe I can have a shorter activity and then rest
  • When I am hungry I could have a snack
  • When I am anxious I could go outside for a walk
  • When I am frustrated I could ask for HELP
  • Calming Activities May Be Different for each Child
  • A break
  • A quiet place
  • Deep breathing
  • Exercise
  • Thinking positive thoughts
  • Asking for help with an assignment/activity
  • Have a snack or a drink

HELP ME: WHERE DO WE START

           First give yourself permission not to be perfect and them as well

           * Start working on these skills on non-school days when expectations are less

           * Take on these roles (dumb, confused and forgetful)   “Where did I leave my keys? I wonder what we need to make your lunch, I am sorry I forgot where your jacket is, can you help me?

           Offer choices and encourage choosing (which fruit would you like in your lunch today)

           * Learn to WAIT (sit on your hands, close your lips) allow them to process and try first. Then provide more support (verbal or visual)

           * Then identify one job or two your son or daughter can do to contribute to being part of the family (unload silverware tray in dishwasher, or put something on the table for dinner, or bring in the paper or mail, carry in the milk container and put away, carry their laundry basket to wash room or just put a few items into the washer or just close the lid)

           * They could put a placemats on the table for a meal & or put out enough napkins for the whole family

           * Begin to expect them to pick up their stuff on weekends and put it back

           * Tell your son/daughter it is cold outside or raining, ask them to get what they need, WAIT before telling them or getting it.

           The night before school offer them a choice of two colors of shirts or two kinds of socks they will wear the next day.

           * When you set up an art project at home, forget something they need. WAIT, have them go find it

           *   Don’t load their meal plates. Put small quantities & then put food out of reach. Encourage them to ask for more. Don’t put anything on the plate & encourage them to say please pass the _____ or I would like some______.

           On weekends give your son/daughter of choices of activities

           * Don’t open boxes, jars, packages.  WAIT till they ask for them to be opened. Let them try to put that straw into the box of juice

           * When it is time for their bath or shower, do not turn the water on. Ask them which one is hot or cold? Which shall we turn on? Teach them to adjust temperature with knobs.

                          ** Each Time you expect your child to initiate, make a request, respond or find a solution you are increasing their cognitive development and helping them move to independence.

           ** When you choose chores think about their age & their developmental level & their physical skills. Choose just a few & then add more over time

           * They could rotate chores with their siblings

           * You can model chore, talk them through chore & or make a visual chart for the steps

           * Chores could be rewarded with praise, money or special activities with the family

           *** Cooking at home is very important. Start simple, then get into planning, purchasing. They should also help clean up afterwards ( teach opening packages, measuring, mixing, draining, chopping, eventually cutting)

           * Teach use of the toaster, microwave, blender & eventually the oven

           * Making something & then eating it immediately is very reinforcing

           COLLABORATE WITH YOUR STUDENT’S SCHOOL TEACM

           Make frequent visits to your student’s program observing them involved in independent skill development.

           * Practice actual skill with the teacher or therapist when you visit and get feedback

           * Ask the teacher or therapist to help you make visuals for home

           * Make a list of all the independent skills your son needs, prioritize them with our team & begin to put them on the IEP. While the team is working on them in school pledge to work on them in the home.

           Ask you teacher or therapist to complete an independent living assessment and share results with you. Prioritize tasks. Identify which ones can be worked on in school and which at home or if both should be worked on in both environments.

           * Then sit down with the family & set a schedule for helping your student begin to learn independence

           * Agree to give choices, WAIT, assign chores, play dumb

           * Ask teachers when other family members can come to learn

           * Ask teacher to schedule your outside providers to come learn

           You Are Not Alone: Together With Others You Can Do Great Things

            

            

            

            

            

            

            

            

 

            

            

            

            

            

            

            

 

            

            

            

            

 

            

            

Building Independent Sons & Daughters

OR

Getting out of our own way and Firing the Nanny and Butler

It’s not so easy for parents…..

           Parents may feel guilty

           * Parents may be afraid their son or daughter might get hurt

           * Some parents want it perfect & done fast

           *Parents may not understand their child’s capabilities

           Parents may work full time, have other siblings & have little help in the home

           * Parents may not know HOW!! Confrontation can be hard

           * The task seems so time-consuming & exhausting

           * Sometimes cultural beliefs and roles make it difficult

           But You Are Sustaining Dependence The Longer You Wait

           You are anticipating their every need

           * You are problem solving for them

           * You are communicating for them

           * You are picking up after them

           * You are taking care of every activity of daily living

           You Are Limiting Their Growth & Development

           They never have to initiate

           * Think of a plan or carry out a plan

           * They are not required to communicate but instead throw tantrums to get needs met

           * You choose their clothing

           You do their laundry

           * You make their lunches

           * You make sure they have a coat or jacket

           * You pour, cut, stir, open and even get out all food items for them

           With the best of INTENTIONS (Love, Caring, time, fights, lack of knowledge)

           BUT Parents Need to Do Less for their son/daughter BECAUSE

           Your children will take a longer time to learn all the independent activities that their typical peers learn easily

           * Your child learning skills will build his/her self-esteem, give them confidence and develop a willingness to try new things

           * Your praise for their accomplishments in this area will make them proud

           * The more skills your son or daughter attempts, partially meets or totally accomplishes opens more social doors, educational doors, vocational doors and living doors

           INDEPENDENCE INCREASES CHANCES FOR FUTURE SUCCESS IN ALL ASPECTS OF LIFE

           So Get Out of Your Own Way

           FIRST Forgive yourselves if you are holding yourself responsible for your son or daughter’s challenges

           THEN

           Let go of the following pre-conceived ideas

  1.    a) My child will never learn, or it’s too early to teach that or I can’t learn how
  2.    b) My child can’t do that, my child won’t do that
  3.    c) I don’t have time to help my child learn this
  4.    d) This is the school’s responsibility
  5.    e) The Speech Therapist, the Occupational Therapist & the Physical Therapist or teacher will

                  solve this problem

           DEVELOP AN ATTITDUE OF POSSIBLITY THINKING

           THEN REACH OUT FOR HELP

           To Parent Networks who provide workshops on just about everything, even teaching independent skills and how to write functional living IEP goals

           * To your education team & regional center team early and make sure independence is a major part of each & every IPP and IEP discussion with IEP & IPP goals addressing skills of daily living

           * Hire in home helpers but make sure they are also addressing the building of independence

           * Reach out to counseling if you are needing to work through guilt, depression or accepting and prioritizing life with your special needs amazing son or daughter

           Take Responsibility

           Teachers want to help…reach out to them

           * Agencies and private consultants are available…..reach out to them

           * Manuals and curriculums are available….. Buy them, read them and choose one activity a month to try

           * There are conferences, workshops, lectures, seminars, video web sites on line for teaching living skills…. Click on them, experience them

           Start giving your son/daughter choices early

           * Don’t wait to your son/daughter is almost an adult to act

           * Don’t do everything for you son/daughter

           * Don’t rule out possibilities

(see more steps in next blog)

HEAR 0UR VOICES..... THE WISDOMS OF PEOPLE ON THE AUTISM SPECTRUM

As I begin the 7th year of hosting my Autism Lecture Series I see now why it is time to bring the series to a close. How could it get any better than supporting people who live on the spectrum each day as they reveal their own stories filled with frustration, anger, sadness, hope & humor? It can’t.

I had the pleasure this month to facilitate two powerful discussions, one in Redwood City at Wings Learning Center, the other San Rafael at Marin County Office of Education with young adults on the autism spectrum.

The planning of this event started over a year ago when I connected to colleagues who were supporting people with ASD. I explained to them that I wanted parents & professionals to hear the real voices of people on the spectrum. I wanted teachers, therapists, administrators, residential & vocational staff, medical practitioners, mothers, fathers & grandparents to hear the voices of those who experience autism themselves. So, young people were identified & I met them at coffee shops, centers, restaurants & schools to explain how it would all work. Some I just had email conversations.

I developed a set of questions to give them ahead of time, so their anxiety could be lessened. I drew the building & the room the presentations would occur in & I discussed with them step by step how I would support & facilitate the time we had together. We discussed dress code & social skills for the day.

Each speaker sent me his/her bio & a picture to use in communications. I sent monthly reminders to the speakers & their support teams & finally the first lecture day arrived (September 14 in Redwood City & September 24th in San Rafael)

I couldn’t have been more proud to have been part of making this happen. There were moments of anger, when Jamie, Arin & Rose told their stories about how they were bullied. There were moments of laughter when Erin & Rose described how they took very proactive ways to deal with those classmates who would choose to take advantage of them. There were moments of sadness when Jamie offered such touching pearls of wisdom to mothers in the audience (When your son or daughters are hurting, don’t be afraid to just hold them & let them feel the beat of your heart)

There were moments of confirmation when Gwen & Jamie expressed their hopes to one day get married & have children & when Rose expressed the desire to be employed by Nintendo or Sega or when Tamsin expressed the desire to be able to live anywhere she chose to live & that it be close to where she wanted to work & connect to a community.

Then there was the moment when a mother asked for suggestions to stop her son’s hand movements because he would be going to a public school & she wanted him to fit in, when Jamie asked, “Why does it matter to you what other’s think?” “Don’t you just want your son to be able to show his excitement or be himself?”

Our guests learned that it is often difficult for these people to advocate for themselves. They had to learn these skills well after finishing high school. Guests learned that these young people failed college because no one prepared them for college life. Rose remembered being confused about the time her first class started & finding out that she would be late didn’t go at all and then chose not to go to any classes that day as she feared all her teachers would be mad. All she needed was someone to tell her it’s okay sometimes to be late & just because you’re late to one class doesn’t mean you can’t go to the others.

Our guests heard the voices of these young adults who live each day on the spectrum & felt grater compassion & understanding

I can’t wait till next month to hear the advice given.

In the previous two blogs we discussed how siblings are feeling when they have a brother or sister with a special need. We began to explore ideas for supporting sibs. Well,

HOW ABOUT SIBSHOPS?

Sibling’s anxieties, fears and doubts can be addressed through group work.

In some communities a group meeting is formed for siblings to come together. These are called Sib shops

The meeting is an opportunity for sibs to come together to receive peer support and education within a fun recreational manner

One agency or more could come together to offer this group

A group could be run by a social worker, teacher, nurse, psychologist or an adult sibling of a person with special needs

Groups are NOT therapy but often have a therapeutic effect.

Facilitators of the group keep an eye on the individuals in the group and see if any might need additional services

Groups can be as small or as large as the facilitators feel is positive. Some say a group of 12 with two facilitators works well.

Each community determines what day, or time or space to be used. Some groups can be as short as 1.5 hours or as long as 4 hours. Groups can be weekly, monthly or quarterly Most are bi-monthly.

Groups can be developed according to ages (5 to 7, 8 to 12, 13 to 18, 19 to 25 other)

Games, discussions, arts & crafts and speakers are activities used to connect participants

Sometimes lunch or snacks are served & they learn about special needs

They meet other siblings in a relaxed recreational setting

They discuss common concerns and positive experiences

They learn how to handle common experiences they encounter having a sib with special needs

Some SIBSHOP DISCUSSIONS ARE:

How did you learn about your sib’s disability? How was it explained to you?

Is your life different from other kids? How?

What are the good parts of having a brother/sister who has special needs?

What are the not so good parts?

What do you think will happen when you and your brother/sister grows up?

Are friends and classmates ever a problem? What do you do?

What do you think parents should do for brothers/sisters of kids with special needs?

Is being a brother or sister of a special needs person different than being a brother or sister of a typical child?

Other TOPICS For Discussions can be: ATTENTION DEFICIT DISORDER, ANGELMAN SYNDROME, AUTISM, CEREBRAL PALSY DOWN SYNDROME, EPILEPSY & SEZIURES, HYDROCEPHALUS, TOURETTE SYNDROME.   Understanding the disability helps bring acceptance.

Sibs Lives Can Be Happier When We Help them acquire knowledge and address their questions

Parents Lives Can Be Happier When They:

Learn how to support their child with special needs and their typical developing children

When they take care of themselves as well (Take time for themselves, Eat Well & Seep Well)

Find other parents with similar challenges and comfort each other

Can learn to ask for help from professionals

When they are allowed to express their feelings

When we offer Sib shops we help everyone.....

Perhaps you can design and offer a sib shop in your community.

BUT Siblings MAY ALSO DEVELOP POSITIVE FEELINGS ABOUT THEMSELVES

I am Mature  (My parents trust me to help)

I am Independent  (I can learn to problem solve)

I am Patient (People learn at different rates)

I am Understanding  (My brother/sister is still a person with feeli

I am Caring (I will find ways to help others in the world)

Some siblings learn to take time for little things in their lives and when faced with challenges know they can deal with them

Sibs often learn to Never Give UP

To take time for themselves

To be Kind and Encouraging

To laugh more

WHAT CAN BE DONE TO HELP SIBLINGS BE HEALTHY & ADJUSTED

Parents need to reach out for help from professionals (teachers, medical, therapeutic community, family, friends)

Siblings need to understand the challenges of their brother or sister. What is Cerebral Palsy, Downs Syndrome, Autism, Intellectual Disability, blindness, Deafness, Attention Deficit Disorder? Do this early, do it often and do it in age appropriate language (simple at first to more details later)

Siblings need to be assured that the challenges are NOT contagious like a cold or flu

They need to know that there are many, many children born with challenges in their communities and in the world

They need to know that their brother or sister will also have some abilities and must be encouraged in these areas

Parents need to be careful not to treat brothers and sisters as caretakers, but as children

Do not give them responsibilities beyond their maturity!

Encourage children to ask questions and involve them in discussions. Value their feelings and opinions

Siblings will need to know how to play with their brother/sister. Some children with challenges may not show an interest in playing. This is hard on the sibling. Help them learn to play with their sibling.

They are not going to go through the normal sibling developmental milestones. Through their interactions sibs learn about developing relationships. So if they can’t with their sib, there can be challenges. But if they learn to play with others this will help.

Adult Siblings will benefit from seeing a plan made by the parents about the future of their sibling. This could be written out and updated periodically with the following:

Who are my brother/sister’s friends, family members and neighbors that can help?

Who are the doctors and educators who can help me?

Who are the doctors and educators who can help me?

What are the interests of my brother or sister with a disability?

What financial planning has been done (How will I take care of my sister/brother)?

What are the laws around taking care of my sibling in my own community?

What is the medical history (medications, treatments) I need to know?

When a plan is put in place the sibling can then experience less stress.

 

 

 

 

 

 

 

 

 

 

 

Siblings Have Feelings Too 2015 Each time I spend time helping in Indonesia I gain remarkable insight. This time was no different. One of my take homes this time was never take for granted the vast number of resources, understanding & access to information that families have in the United States. During my workshop on Bali, “Siblings Have Feelings Too” the tears of one mother will always be a reminder to deliver information caringly. In the USA we take for granted that families know they will have challenges helping their son or daughter with special needs & that they also know they may need to find ways to support the typical siblings of their special needs brother or sister in the family. Ibu (mother) Panji, a mother in Bali, who tries everything she can to support her son with autism, came to realize that she also may need to find support for her other children who might have challenges due to the care of their brother or sister.   A double sadness comes to mother Panji while attending my workshop. Her tears showed me that.

In the next couple of blogs I hope to share some meaningful information to help families and professionals working with families.

Why should parents be concerned about sibling’s feelings?

Siblings can develop feelings of jealousy, resentment, isolation, anxiety or fear because they have a brother or sister with a special needs and then entire family is affected

When parents are also worried about siblings they are more likely to feel stressed

When siblings’ feelings about their special needs brother or sister are not addressed they are more likely to develop anxieties, frustrations and guilt

WHAT MIGHT SIBLINGS BE THINKING?

Will I get to spend time alone with my mother or father?

Do my parents still care about me?

How will I explain my brother or sister to my friends?

Why doesn’t my brother/sister have to do chores and all the things I have to?

Why does my brother/sister act that way?

I am embarrassed when people stare at my sister/brother and my family

How am I going to play with my brother or sister?

It seems my brother/sister gets so much more attention

Will I catch what my brother or sister has?

SIBLINGS MAY FEEL   (Confused, Lonely, Jealous, Guilty, Fearful, Responsible, Sad, Angry, Frustrated)

Stress from embarrassment

Stress from not being able to engage with their brother or sister

Stress from aggression from their sibling

Stress by their own perceived future responsibilities of taking care of their sibling

They can feel ignored or uninformed & so left out

They may feel left alone due to their sib’s medical treatments

They can feel resentment when family plans have to change because of sibling behaviors

They may feel they might get what their brother/sister has

They may feel fear wondering if their sibling is going to die

They might feel jealous due to all the extra time their sibling requires

They could feel guilty & think they did something to cause their sibling’s problems

They could feel guilty because they complain about their brother or sister and they know they are the one without the disability

They will feel sad because the future is so uncertain

They may feel embarrassed of their sibling’s looks, behaviors or inability to communicate

They will feel confused because they lack the information about the disability

           IT IS SO, SO IMPORTANT FOR PARENTS TO ASK THEIR CHILDREN HOW THEY ARE FEELING OVER AND OVER AGAIN, THROUGH All Steps in THEIR GROWING UP SO FEELINGS CAN EB IDENTIFIED AND SOLUTIONS FOUND

More To Come!

 

 

What your grandchild wants you know

  • Autism is a condition that affects the way my brain works. My brain is wired differently
  • I am not stupid
  • I have trouble dealing with sensory information (eyes, ears, touch, smell)
  • I may see many details and become upset when things are out of place
  • A loud noise might surprise me
  • I may feel nervous, upset or frustrated when my schedule is changed
  • I may not be able to stop an activity when you feel it is time
  • I may go to a corner, talk to myself or make sounds until I calm down
  • I may feel touch in different ways than you do. A light touch might feel like a pinch. Other times my skin might not have much feeling & I may forget how strong I am
  • I may play differently & have difficulty using my imagination. I may forget to take turns & may be better at real than pretend
  • I may not talk at all. I might hum, laugh or scream. If I do talk I may get stuck or confused when in a conversation and go on & on or repeat words over and over
  • I may have trouble understanding non-verbal communication (expression on people’s faces, voice tone & quality, body positioning)
  • I may have seizures or develop them
  • I may not be able to eat some foods (Dietary Restrictions)
  • I may only like certain foods (Food Preferences)
  • I will have Fears & Anxieties
  • I will have Obsessions& Compulsive behaviors
  • I may have trouble Sleeping
  • When you have seen one person with Autism, you have seen one person with Autism……
  • So please understand, value & respect me for my individuality and my gifts
  • Remember none of us are pre-packaged. I told you when you have met one of us, you have met one of us
  • It’s okay to make mistakes with me and not have all the answers
  • Don’t worry about filling me up with information, develop a relationship first
  • Know that each moment we are together will be a learning moment for us
  • Teach me meaningfully “Some say I am a Mac in a PC world”. But with time we can learn each other’s system and connect
  • I have challenges in memory, planning & paying attention and in social perspective taking
  • I am distractible
  • It is hard for me to process more than one sensory system
  • I think in specifics and generalities so good
  • I need to see it to learn it. It may take me more time to process something
  • I depend on routine, it helps me handle each day
  • I think more concretely
  • I am not sure there is more than one way to do something
  • So, I may not view a situation like you do
  • Abstract language and idioms are hard for me, so teach me them
  • You might also watch your pitch, tone & inflection with me. I don’t really get those things. Body language is also hard for me to read.
  • I communicate through my behaviors. You might have to become a detective to figure out what I need, feel or want
  • I am not an Autistic Child but a child with autistic learning challenges
  • Not everything I do is because of my autism
  • I am more like other children than different
  • I want to be liked, to drive, to have a job someday & have friends
  • Believe in my potential
  • Be patient, I learn through small chunks & repetition
  • See me capable

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This email address is being protected from spambots. You need JavaScript enabled to view it.Grandparents of children with autism deserve our help and support. We need to listen & provide them with resources. 

  • Grandma Nancy Thought
  • Her grandchildren would get to know her & she them & that they would have big & small adventures together.
  • She thought she would be an observer in their activities (school, sports)
  • She thought she would support her own children by listening to their tales of raising kids.
  • She thought she would be sharing stories with her friends of the joys of being a grandparent.
  • The Grandparents Survey Reported (IAN Research 2010 www.ianproject.org) that when they heard they had a grandchild with Autism
  • Grandparents felt at a lost & inadequate
  • Their dreams for their grandchild changed
  • They felt guilty being at a distance
  • They were sadden by the news
  • They worried if they would be able to handle them and their needs (sleep challenges, wandering, meltdowns, not toilet trained, no sense of danger, selective food intake)
  • What they thought would be fun and easy was now over shadowed by their anxiety
  • Autism Speaks Study Reported
  • Grandparents are generally shocked and feel a full range of emotions including sadness, blame, embarrassment and anger.
  • It is felt that grandparents go through a period of mourning similar to the parents
  • Anger
  • Confusion
  • Denial
  • Disappointment: Will I have a relationship with my grandchild?
  • Fear: What if I cannot help or only for a short time
  • Guilt: Did I do something to cause this?
  • Powerlessness: I wish I could make it go away
  • We must help grandparents move through these feelings and to replace those feelings with new ones
  • Acceptance, Confidence & realistic expectations
  • Remember your grandchild will have strengths and talents: appreciate them
  • Your children & experts can help you understand your grandchild & this will build your confidence
  • Learn to accept your grandchild for who he/she is & dream new dreams
  • Remember What You Can Offer
  • You can help raise the child, you have raised children before
  • You know more about life, you lived it longer
  • You may have the ability to spend time with your grandchild
  • You may have more patience having raised children
  • You may be more accepting than others
  • Remember Grandparents Can Help By
  • Starting to Learn about autism
  • Not blaming your children
  • Not criticizing for their failure to discipline
  • Remembering you are not living day to day with this child
  • Not taking things personally. These children don’t form relationships easy, so don’t give up, & don’t develop indifference. It’s okay to be disappointed but keep trying
  • Being careful with attention to the typical grandchild and to try to learn how to have a meaningful relationship & learn strategies
  • Remembering that fathers need support too
  • Finding out if financial help is needed
  • Offering to baby sit or support child care
  • Offering to house keep or find a housekeeper
  • Encouraging your grandchild’s independence
  • Grandparents Help When They
  • Listen to their children
  • Listen to their fears & grief
  • Affirm you will be there for them
  • Ask if they need something
  • Affirm that they are doing a good job
  • When they accept their grandchild for who he is and not what he will become
  • By Being someone to talk to
  • By Relating without judgment
  • By Remembering that the disability is only one part of your grandchild
  • By Being positive and hopeful
  • Respect boundaries: Encourage and validate (bite your tongue)
  • LEARN, LEARN, LEARN
  • BECOME AN ADVOCATE
  • Grandparents Can
  • Read to their grandchild
  • Play with their grandchild
  • Help teach them (dressing, setting table, cleaning up, teeth, bathing)
  • Sing
  • Dance
  • Do sports
  • Don’t be afraid to make mistakes

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As long as I have been facilitating the Autism Lecture Series I have had the honor to connect to several grandparents who attend to gain knowledge and insight into helping and supporting their own children who have a child with Autism or to learn how to engage with their special grandchild. I have often been asked to provide specific information for grandparents. Here is a begining.

  • Most grandparents are shocked when they hear that there grandson or daughter has been diagnosed with ASD
  • A huge range of emotions may be felt (anger, confusion, denial, disappointment, fear, guilt & powerlessness)
  • Many go through a period of loss that hopefully can lessen with time & with understanding & knowledge can offer a starting place for everyone
  • Knowledge on Autism Spectrum Disorders
  • What it looks like & feels
  • What are the suspected causes & statistics
  • What are some of the mostly widely accepted & beneficial interventions
  • What do the families go through
  • What are the roles grandparents can play
  • What supports & resources could help grandparents
  • What are positive strategies for interacting with grandchildren
  • Grandparents need to understand the communication, sensory, social & learning differences of their grandchild with ASD
  • Grandparents need to hear about the challenges their own children face as parents of children with ASD
  • Grandparents need connect to & support from other grandparents
  • Grandparents will need to acquire some basic skills in interacting with their grandchildren
  • Grandparents will need to learn how they can support their children
  • Grandparents will need to learn about resources to help their children & grandchildren
  • And Everyone will need to try & accept that every Grandchild Brings Special Gifts Into the World with them
  • Remember Grandparents dreamed about having a grandchild for a long time
  • Many, no longer feeling limited by work & managing a household & couldn’t wait to play with their children’s children
  • Many thought they would have an experience just like every typical grandparent’s experience
  • But Grandpa Keith said, it felt like this:
  • “I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
  • When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
  • After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
  • "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
  • But there's been a change in the flight plan. They've landed in Holland and there you must stay.
  • The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
  • So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
  • It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
  • But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
  • And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.
  • But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. 1987 by Emily Perl Kingsley
  • Grandma Sana:
  • Hoped & prayed that her two children would be blessed with children because they had such great parenting instincts.
  • She hoped that her grandchildren would be like her children….good hearted, loving, healthy, intelligent, beautiful, happy, lively, talented, engaging, and well-adjusted & that they would grow up in loving & supportive families, bringing joy to all their lives.
  • She looked forward to seeing her son & daughter’s children become playmates and good friends.
  • Grandma & grandpa thought they would even introduce them to foreign travel & they might learn to appreciate other cultures and ways of life

But they are in  Holland instead of Itlay & it is time to learn about Holland!!!

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So Many Important Questions for Families & Professionals

1)What is the proper way of learning for a child with autism?   Every child with autism may have a different learning profile as autism is a spectrum disorder. Their way of learning will be influenced by their communication levels, cognitive levels, sensory challenges, motor challenges & social awareness. It is believed that the best program for all on the spectrum is some level of structure, emphasis on visual supports, addressing executive functioning challenges, understanding, addressing & accommodating sensory challenges, supporting motor challenges, developing joint attention & social reciprocity, teaching social rules & identifying the interests of the student & using those interests to engage them. A program must address the anxiety of the student with autism, his or her challenges with starting tasks or getting stuck, the child’s black & white view of situations & their ability to assess how big a problem really is & to find solutions.

2) How does one set academic targets for students with autism in an inclusive classroom? Every student should be assessed in order to identify their cognitive levels, identifying strengths & weaknesses. Academic targets should be set from the results of the assessment. Teachers need to look at reading levels (decoding and comprehension), writing skills (motor & composition), mathematics (calculation & problem solving), spelling & their cognitive levels (comprehension is key to setting realistic academic targets)

3)Are there any home treatments for children with autism whose parents are busy working? Many families must work all of the world. In some parts of the world, there are agencies who can come into the home & train the parents or someone that the parents have hired to support the child when the parents are working. These support people need to understand autism & particularly the specific child being supported.   These people could go to school & observe & learn from the teachers how to support learning (reading, math, homework). These people could be trained to help develop the child’s independent living skills. Some parents may need to decide not to work & become the child’s teacher of home skills. In some countries parents keep their child at home & work with the home school associations. They have on line curriculums they can access.   Home treatment is up to the parents to develop & guide. They must locate organizations, pay organizations to come in to help support their son or daughter’s home learning.

 4)When is it the right for teachers to encourage children to maximize their potential? A teacher’s job is to inspire a child to learn when they are very little. Learning should be fun and engaging. Parents and teachers should encourage a child to learn all the time. It is a matter of making learning meaningful to the child. So one must know where the child is developmentally. Then learning can be structured around their level of understanding, communication and interests. I believe that children with autism need to start young to learn.

 5)How do we help children with autism learn better?   First teach at their level of understanding. Next make learning fun. Next make learning meaningful. Use their interests. Then structure each learning activity visually. Then praise for every little step forward. Work with a speech therapist. Work with an occupational therapist. Work with an educational specialist.

 6)How do we deliver effective education to children with autism and mental retardation? Once again, every child learns differently. A child with lower cognitive ability must have things presented at their level of understanding. A child with lower cognitive ability will need more practice more, have smaller amounts of work & many visual supports. They must have a way to communicate first &foremost. (Signs, Pictures, Technology). All teaching must be meaningful. Use their interests. What is taught should be functional (truly occur in their daily lives). Teaching must be structured. Small classroom size. Calm environment to learn in.

 7)What is the impact when a child learns one thing from one center and something different from another center? I believe that there needs to be collaboration. If a child is going to two or more centers for treatment then a collaboration time needs to be designed. All specialists should be sharing what they are doing & how on a regular basis!!!!! Children need consistency. The interventions that work should be shared & embraced by all.

 8)How to teach children with sensory integration challenges? Once again, each child has differing sensory challenges. Some are visually distracted. Some auditory distracted. Some are sensitive to touch, taste or smell. A sensory profile should be completed, identifying the challenges & then a sensory diet develop by the Occupational Therapist.   Some students are over aroused while others under aroused & different exercises & supports need to be put in place depending on the sensory integration issues they present.   Teachers need to then modify the classroom environment to accommodate sensory challenges. Teachers may need to modify the learning schedules in the classroom due to sensory challenges. Special equipment may need to be used to support sensory needs. Sensory integration is an individually based intervention.

More Questions From Java

Here are the 2nd set of questions from my participants in Jakarta. It was interesting to learn what they were thinking.

1)What kind of activities should be planned for 17 to 20 year olds who never have a great deal of treatment early? Once again this depends upon the level of communication, behavior, sensory challenge, cognition and social skills. All students should receive a program that addresses independent living skills, social skills, leisure skills, pre-vocational skills, communication skills and community access. Lower cognitive students need it earlier. The education system needs to help them prepare to learn how to live, work and recreate in their own communities.

2)How does one implement a curriculum for a non-verbal child? We all communicate differently. Some through gestures, some pictures, some sign and now many through technology. The teacher needs to adapt the curriculum based on the form of communication system the student has or is developing. Signs need to be taught. Pictures need to be arranged for easy access for responding and technology needs to be programed. Sometimes an extra staff person is needed to help support these children so their communication system can be created and implemented. Non-verbal children are not deaf!!! They hear. They just need a way to respond and we need to structure teaching allowing them to access their own communication systems.

3)What types of activities should be taught to non-verbal children? All (social skills, pre-vocational skills, communication skills, skills of daily living, hygiene, academics, leisure, community access, academics)

4)How do we improve communication skills? There are many activities that can be done to improve the communication skills of our students. Here are only a few. Read to them and take them on field trips to museums, art galleries, parks, hikes, bike rides etc. Point out new objects and information. Work on wh questions with them (who, what, where, why, when and how). Have them problem solve more? Have them make up shopping lists, find things in stores and pay for things at the market. Have them read recipes and prepare meals. They will learn new words in context.   Teach them to greet others, ask questions and have a conversation. When they read have them underline the words they do not know. They discuss meanings of words with them. Teach them to use email and write letters to family members. Have them call friends and family on phones and ask questions. Take them to the library and have them ask where something is located.

5)School learning and home learning is needed. Parents need to stop thinking and doing for their sons or daughters. Learning should continue at home. They should have jobs around the house. They should help shop and meal plan. They should clean their rooms, bath, brush teeth, comb hair, do their laundry and dress themselves. They should set the table, load a dishwasher, vacuum, sweep, dust, and mop. Skills of daily living are very important to becoming independent and learning to problem solve. Parents should get them into the community to see new places and learn new words and rules for engaging in the places they visit. Perhaps the teacher can send home some small assignments at first. A special place set up to do homework is needed.

6)How do we teach children with autism to have a conversation in English…. First make sure they can speak their regular language well. Make sure they are interested in learning English. Then make it fun!!!!. Teach it in context.   When you shop, name things in native language and then English.   Find their interests and have a game of finding out the name of their interest in English. Once they are learning then perhaps get a tutor to work with them privately, slowly.

7)How do we decrease anxiety for children with ASD in the classroom? There needs to be a schedule visually on his/her desk. They need the right seat. Maybe on the end not in the middle of everyone. Look at the noise levels in the classroom. Look at the visual distractions.   Don’t have too many transitions. Let them know when things are going to change, before they change. Let them go first to recess or last or stay inside away from crowds if they like. Give directions visually and verbally. Make sure they understand your directions. Maybe have someone there to help them in the classroom. Give them frequent breaks. Connect with the parents often and have them go over reading assignments the night before. Have parents help make sure they have all the things they need each day for school. Help them keep their space organized. Make sure there is not too much on the page of work they have to do. Keep it simple. Help them get started. Sometimes they get stuck. Give warnings before the end of the assignment time. Let them have more time if needed.

8)Is there an effect of diet or supplements? We all know that less sugar is always best. Less caffeine is best as well. We know some children are sensitive to gluten or casein. This should be tested. We know that they need good oils (not corn oil). Seeking knowledgeable help in this area is always a good thing. All children are different. Not one supplement works for all.

9)How can you prepare your child to go back to school after a long holiday? Put up a calendar. Show him/her visually how the days are moving forward with an X. Put a big mark on the day he/she returns to school. Ask the teacher for some repeat work that your son/daughter could do over the break. Set up a routine at home during the break with school type activities. Read together, visit interesting places, and practice what he/she has learned just prior to the holiday.

 

Wisdoms of the 2013-2014 Lectures

The 2013-2014 Autism Lecture Series Full of Wisdoms

It was a great year. I was delighted bringing such wonderful state of the art information to families, students & professionals

September 2013 was honored to support Dr. Neal Rojas, Board Certified Developmental Behavior Pediatrician from University of California SF. Problems with Evidence Based Autism Interventions was his theme. Many families find interventions that cannot be proven through evidence based studies but no less have helped their son or daughter. Dr.Rojas introduced the guests to some of the state of the art interventions for ASD (TEACCH, ABA, DIR/Floortime, Denver Model, Speech & Language Therapy, Occupational Therapy, and Social Skills Instruction) and then helped us explore Alternate Therapies (diet, supplements, gastrointestinal issues, seizure management and pharmacotherapy).

October 2013 showcased the work of Dr. Kari Berquist, Ph.D, BCBA-D from Stanford University School of Medicine. Evaluating ASD & Related Disorder Interventions: A Parent Group Approach was her topic. She strived to open our eyes to the importance of families becoming excellent consumers in deciding on and evaluating programs for their children. Her group has been educating parents in evaluating practices for their child’s profile. The program has emphasized parents understanding what each intervention is supposed to do and evaluating if it has truly happened. Her group focused on teaching parents effective decision making processes when looking at programs and keeping their children in them.

January 2014 was a power lecture “Hear our Wisdoms” featuring three fathers with sons on the spectrum & a grandfather with a grandson on the spectrum. Each speaker told his story about their son or their grandson with autism. They each communicated how important it was to spend time alone with their family member, to accept them for who they are 7 never give up hope. One suggested that you find the little things that occur in the lives of your family members with autism & appreciate them. They all encouraged fathers to reach out & connect with others. They all realized how important it was to support the other siblings in the family or their own daughter & son-in-law as they support their child with autism. They all suggested finding a higher source to connect to as well.

February 2014 “Moms…The Wisdoms of Our Voices” was also very compelling. Three moms with sons & one with a girl told their stories of fear, anxiety, frustrations and acceptance. They spoke about their learning curve in the field of education and the fights they encountered along the way to get their children assessed, understood and supported in the school system. One mom brought a pair of boxing gloves that she has kept hung in her room to remind her that the fighting for hope will never stop even as her son enters adulthood. They all encouraged others to find the right team of experts to help. They all stressed the need to connect with others experiencing similar challenges. They all stressed the need to take care of themselves so they could take care of their children and other family members.

March 2015 “Understanding how illness can present as Behavior Challenge; a practical approach for looking at behaviors of people with special needs through a Health-Minded Lens was presented by Dr. Clarissa Kripke, Clinical professor of Family and Community Medicine at UCSF. Dr. Kripke reminded us to “Think Medical” first when we see behavior (migraines, hearing, vision, dental or injury). Think Urinary tract (infections & obstructions). Think reflux and gastrointestinal problems. Think seizures & side effects of medication. Behavior can also signal (abuse, escape, social attention, stressors, control, and reduction of anxiety). Remember all behavior is communicating something. Also remember that the caregiver could be the answer due to their anxiety, stress, training or support. She advised families to chart (bowel movements, periods, seizures, medications, behavior, mood, movements, strength, & energy). These can all lead to behavior challenges. Her advice was to improve body functions & structures, increase activities, improve the physical environment, improve their quality of life & develop skills.

May 2015: Laura Briggin, Cypress School Director with her MS in Special Education & holding her Board Certified Behavior Analysis license presented last in the series. “Real Work for Teens and Adults with ASD & Similar Developmental Challenges was her topic. Laura started out emphasizing the need to make sure that a student’s IEP (Individual Education Plan) addresses transition issues very early on. When it is time to develop the ITP (Individual Transition Plan) inviting future adult employment supports to the meeting are key. All plans should be built on the student’s personality & his or her interests, strengths & abilities. The IEP and ITP should address the student’s areas of need (communication, sensory, executive functioning, social, visual thinking) for them to be successful in a working environment. Thoughts need to be given on the jobs & types of environment the person will be successful. She suggests drawing a Vision Plan with each student (college, work, living, play). Start with their strengths & likes. Then identify the skills needed & start teaching them. Provide many opportunities for the student to volunteer in their community developing ideas for future employment. Students need self-awareness, career awareness, career preparation & work experience before they leave school.

The Research Road 2012-2013

This was a year of bringing the researches together to provide hope to families & professionals.

In September 2012 I introduced Dr. Ruth O’Hara to our community so she could talk about her research in the area of Autism & Sleep. Dr. O’Hara is an Associate Professor, Associate Director, Sierra-Pacific Mental Illness Education & Clinical Center (MIRECC) Director, National Fellowship Program Advanced Psychiatry & Psychology, Department of Psychiatry & Behavior Services, Stanford University School of Medicine. Dr. O’Hara announced that 44% of children with ASD suffer from sleep initiation, 31% from sleep maintenance & 30 with early morning awakening. Dr. O’Hara let us know that Iron deficiency can cause sleep problems. Epilepsy, reflux & sinus problems can also affect sleeping. She said inadequate sleep hygiene, excessive light, noise or temperature of a room can affect sleeping. She said there could be a Melatonin deficiency, sleep apnea or restless legs syndrome affecting sleep. She encouraged families to connect to the sleep clinic at the hospital and get involved with the research study.

October 2012 brought Dr. Grace Gengoux, Clinical Instructor in the Department of Psychiatry & Behavioral Sciences at Stanford University. Her topic was Naturalistic Behavioral Strategies for Promoting Language & Social Development. She gave an overview of Pivotal Response Treatment (PRT). This strategy focuses on the relationship with the child, taking their lead and occurring in natural settings. Learning must be motiving she suggests. She reminds us that our kiddos with ASD are hard to motivate and they will engage faster if they are interested and it is meaningful or their choice. She stresses that Natural Reinforces promote generalization of the skill. She strongly supports our kiddos learning how to initiate & use cooperative activities where others must participate & have a role. She feels the parents make the best therapist two work with their child & so training them is key.

In November 2012 Dr. Peter Clive Mundy did his first appearance at the series. Dr. Mundy was working on a first volume manual entitled Autism for Educators. His work on establishing joint attention with kiddos on the spectrum is being worked on at the MIND Institute & is a joint venture with Stanford & University of Southern California in his SAV-Lab. When a child cannot follow a reference and share information with another, their learning will be impaired as well as their social engagement and communication.

January 2013 kicked off the New Year with Dr. Lisa Crone from Kaiser Permanente’s Genetic & Environmental Research Department. Dr. Crone’s Twin Study is a federally funded autism study. She described the project of looking at pre & perinatal methylation in the mother & father & child & the changes in DNA. Her study hopes to identify Biologic markers in genetics & environmental exposure. Another study will be looking at over 1200 mothers of children with autism at the start of a new pregnancy and follow them & the new baby through 36 months. She described the work of the Autism Treatment Network collaborating & being able to look at large samples & drawing better conclusions.

The February 2013 “Combining the Senses to Make the World Whole: Multi-Sensory Integration Deficits in ASD” was presented by Dr. Clifford Saron, Associate Research Scientist at the UC Davis Center for Mind & Brain. Dr. Saron first demonstrated how combining sensory information helps most of us detect & discriminate incoming information but so with the ASD population. There is known that people on the spectrum have challenges integrating sensory information & thus have challenges responding to their environment. Where typical people have a greater chance of identify something in their environment with cross sensory information (visual & auditory) this is not true for people on the spectrum. One may confuse the other. Dr. Saron suggested we create environments conducive to learning for our kiddos on the spectrum and remember their processing is different & must be understood & accommodated. He also believes strongly in having our kiddos engage in meditation to help sensory arousal and focus.

The April 2013 lecture with Dr. Robert Hendren, the Vice Chair of Psychiatry, Director of Child & Adolescent Psychiatry at UCSF, “Combining Clinical Evidence with Innovated Research brought some great information to families. Dr. Hendren really helped us to expand our vision of treatments. He invited us to realize that there will be different treatments at different levels. We must look at DNA, RNA, Cells, Physiological processes, Neuromodulators, Brain structure & Cognition& develop different interventions at each level. There may be biomedical treatments looking at immune & inflammation issues, Mitochrondrial function, Methylation, Oxidative Stress & Neurotransmitter production. He wanted us to know that UCSF & MIND were looking at Vitamin D, Omega3, Pancreatic digestive Enzymes & Methyl B12 treatments. He discussed studies on Memantine (Namenda) for socialization and N-Acdetylcystein (NAC) for irritability and Oxytocin for socialization. He discussed the use of Melatonin for sleep challenges. Dr. Hendren supports an integrative approach to ASD (Medical, Ancillary (Speech & Occupational Therapy), Behavioral, Pharmacology & Biomedical)

We ended the series in May 2013 with Dr. Elysa Marco from the UCSF Autism & Neurodevelopmental Center, Director of Research UCSF Department of Neurology, Psychiatry and Pediatrics and Assistant Clinical Professor of Child Neurology. Her topic was Sensory Processing in ASD & other Neurodevelopmental Disorders: From Scanner to School. Dr. Marco has been leading incredible research in the area of sensory processing & integration in clients with autism. It is clear that her research may indicate that the sensory processing challenges in these children cause many of their communication and social interaction challenges. Not only is her research indicating our kiddos hear, see, feel differently than their typical peers but when stimuli is presented simultaneously the integration is different. In order for our kiddos to learn and integrate their sensory processing challenges have to be considered. Classrooms, work spaces and homes will need to adapt for their success.

2011-2012 Lecture Series Takes a Therapeutic Path

September 2011 Rudy Simone, author, speaker & Self-Advocate for those on the spectrum presents on Asperger & Employment. Rudy described her life on the spectrum. She explained how scary faces were & explained the anxiety & fears of people on the spectrum. She explained how she might freeze or flee a situation. She urged neuro-typicals to understand more how it might feel to those with Asperger. She explained how going to work has them leaving their comfort zone. Rudy explained the disappointment of the person on the spectrum thinking all they have to do is hard work & they will succeed. Nope, got to make small talk & talk about things of no interest to be accepted. Rudy said people on the spectrum must learn & then practice social scripts & etiquette for working. Rudy said employers should welcome their logical decision making, their honesty & their pride in their work. She listed supports that can help (maps & GPS, planning lists, wardrobe help, asking for instructions in writing instead of verbally). In her book Asperger & Employment there is a great tool for mapping out your best personal job. It is important for the person with Asperger to identify interests, current skills, job skills required, what the plan for getting skills is, triggers that could limit accepting certain positions and the solutions to all challenges they have identified on the Job Map.

The October 2011, Movie Time Social Learning: Using Kid-Friendly Movies to Expand Social Thought was presented by Anna Vagin, Ph.D., Speech & Language Therapist. Anna explained her Social Time Movie program, which uses popular movies as a tool to teach social thinking & to build language skills. Anna shared how she had her clients choose movies they truly liked so as to engage them. Then together they watched them, identifying feelings of characters, intentions, perspectives, facial expressions, gestures & other non-verbal language characteristics. Then she used role playing. Anna also helped us understand how gesture language often comes before language expression & how our kiddos need to develop a gesture system to help lead to verbal expression.

The Power of Play was the November 2011 lecture with Registered Music Therapist Lizz Domash http://www.marinautism.org/macresourcedirectory/listing.php?id=66 & Liz McDonough, licensed MFT http://lizmcdonoughmft.com/ & registered Drama Therapist. Both therapists explained the importance of PLAY. They demonstrated how play activities help build problem solving, spatial awareness, fine motor control, reading, math, social skills, listening skills, language development, visual skills, cooperation & coordination & motoring planning. Each therapist designs drama activities, art activities, movement activities, & music activities in schools & in their private practices to help children develop & grow in the above areas. Music, Art, Movement, Drama area also fun & engaging. Children hardly know they are working on all those developmental levels when involved.

January 2012 lecture showcased the LindaMood-Bell Learning Center’s reading program for ASD. Kat Vaughan, MBA & Center Director presented the lecture “Improving Reading Skills in Students with ASD”. The strategies that truly work with students with Autism are sensory input, visual imagery and language comprehension. Our students need to see the words in their minds. They need to also see the directions given to them in their mind. They need to work on word meanings so they can comprehend what they are reading. Pronouns are challenging and need to be addressed. Coming up with a main idea of what was just read is another activity needed.

The February 2012 lecture “Yoga Therapy for Every Special Child” was with Nancy Williams a Speech & Language Therapist from Arizona who had earned her Adept Instructor of Hatha Yoga certificate. She realized that Yoga & Neuro Developmental Therapy, another certificate she obtain could help special needs kiddos acquire a broad range of skills. In her presentation Nancy focused on how Yoga can improve the quality of life for our kiddos, increase their breathing, & help them self-regulate, socialize, process sensory information, sleep better & communicate. Her book, Yoga Therapy for Every Special Child http://www.amazon.com/Yoga-Therapy-Every-Special-Child/dp/1848190271 is easy to learn from & incorporate in classrooms and therapy sessions.

Diane Hunter www.afterautism.com , mother of a son with autism & life coach kicked off our March 2012 Autism Lecture with “Beyond Words” Diane shared her story of her son Ian & her realization that she was communicating things to Ian that she was unaware. She explained to the families and professionals that it is important to learn how our non-verbal communication sets our students to succeed or fail. She explained the work she is doing with parents and professionals, working with their non-verbal language systems (tone, pace, facial expressions, proximity, touch, eye gaze, inflection, volume and gestures) so they can get the best results & decrease their own stress and anxiety.

The April 2012 Autism Lecture, “Creating Therapeutic Foundations for ASD was presented by three amazing therapists, Christine Egan, MPH/PT licensed physical therapist, Miki room, OTR/L, licensed Occupational Therapist & Margaret Bourne, CCC/SLP, certified speech and language therapist. Their topic was all about an interdisciplinary approach to early intervention. It was apparent to all guests that it is critical for a collaborative team to be working together to resolve the complex challenges of kiddos on spectrum. Core Strengthening needs to be led by a physical therapist & strong body foundation set for learning. Sensory Processing challenges need to be identified by the Occupational Therapist and sensory strategies put in place to support learning at home, in school & the community as well as fine motor & motor planning. Addressing the receptive & expressive language challenges in all children with ASD is critical. Behavioral challenges stem from the inability to express needs, wants, choices, requests, likes, dislikes, confusion & anxiety. Without an effective communication system there will be behaviors that will express those needs. Language comprehension must be addressed so that our children can make sense of communication and what they read as well.

The final lecture of the season, May 2012 was offering the “Ten 10 Behavior Management Tactics for Children with Autism” and was presented by the Founder & Director of Gateway Learning Group, http://www.gatewaylg.com/ . Melissa shared the First/Then strategy, of having the child do a less preferred activity before getting to do a highly preferred activity. She told us providing choices is the next tactic. We might then set up a token system to increase appropriate behaviors & delay immediate gratification. Visual schedules provide understanding & clear expectations. Using praise is key but very specific. She said sometimes using Vicarious Reinforcement (complimenting on another peer) works too. Choral responding helps & teaching rules ahead of time also help manage behaviors.