On the Road With Autism

My journey of discovery. I welcome your comments!



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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