Grandparent Autism Network

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How to Support Parents

You can provide emotional support for the parents of your grandchild with autism. Most families find that facing this challenge together, with acceptance and optimism, brings the family closer. Many parents of kids with autism say that getting verbal approval and support from their own parents means a lot.

Offer emotional support and a listening ear without judgment. Be available when your son or daughter needs to vent or wants to share a success. Knowing they can come to you without being judged or receiving advice can be a relief and reinforcing. Always compliment and reinforce them.

Keep any information about the child and family confidential. Parents prefer to share information about their child, the diagnosis and needs as they choose, rather than having you or others talking about any issues the child or family is having.

There are many controversial and expensive treatments available for treating autism but choosing treatments is up to the parents. They should not have to defend their decisions or whether or not to select an intervention. That being said, you should not feel responsible for financially sponsoring therapies that are not evidence based and proven effective. Currently, Applied Behavior Analysis (ABA) is the only medically endorsed treatment that is especially effective when started at a young age.

Ask how you can be helpful. Parenting a child with autism can be exhausting. Any offers, no matter how small, will be truly appreciated. You might sponsor babysitting, meals, special programs and services, family outings or sleepovers at your home.

Provide support for your autistic grandchild’s siblings. They too often lack the attention they need. Sometimes grandparents find it easier focusing on the siblings and that provides additional respite time for parents, as well.
Focus on staying connected and committed to each other. This gives everyone in your family a sense of belonging. Families say positive things can come out of difficult experiences. For example, some find difficult experiences help them to learn patience, compassion, acceptance and respect for other.

  • Send them care packages with items you know they will enjoy.
  • Post photographs or pictures of local places prior to their visit to you so they can anticipate your outings together.
  • Put your picture on the calendar on the date you will be reunited. The child can then anticipate when you will be together again.
  • Educate yourself and your extended family about autism. Attend seminars, read books, call or email your family to get frequent updates on your grandchild’s progress.

Focus on staying connected and committed to each other. This gives everyone in your family a sense of belonging.

Grandparent Tips for Staying in Touch with Grandkids

You can make a deep and life changing impact on your grandchildren by being supportive to their parents and them whether you live nearby or far away. Support, affirmation and love will help to get your family through the challenges of raising a child with autism.

Research shows that early, frequent and loving involvement of family members is one of the best ways to help children with ASD.  Grandparents can give their families respect, acceptance, love and happy memories. Here are some suggestions about how you can regularly stay in touch, communicate and play an important role in your grandchildren’s lives.

  1. Learn as much as possible about autism. Information about how children with autism see the world, how they communicate and act, will help you to understand and connect with your grandchild. Autism Speaks is a great site with answers to questions you may have and it provides lots of family resources.
  2. If you go online together, it’s important to remember that children with autism may need more time to process information. Be kind and flexible because they may find it difficult to adapt to this format of being together. You may need to use gestures or other ways to communicate besides words. Use positive reinforcement. Praise good behavior – and do not take things personally if their responses are blunt.
  3. There are many free online video chat services available such as Zoom, FaceTime, Skype and Google Hangout. Set up a regular scheduled timeline that works best for everyone to chat online.
  4. Ask the parents about your grandchild’s specific interests, favorite activities and the best means of communicating with them. Search for materials about those interests that you can share when you talk together.

Here are some activities you might share:

  • Cook a quick (30 minutes or less) favorite family recipe together. NOTE: Send a parent a list of ingredients in advance so the child has everything ready for your visit.
  • Color or paint together using the same paint sets or coloring books you have sent to them, in advance.
  • Work together on craft sets you have provided. Origami, felt work, ornaments and greeting cards are some projects you can share. Needlework like crochet, knitting, cross stitch and needlepoint starter kits are also available to send to them.
  • Music lessons. If you play an instrument, help your grandchild to develop an appreciation for music. There are beginner’s music books for piano, guitar, violin, clarinet and saxophone.
  • Read a favorite book to your grandchild online or record your reading and send it to them. Find picture books for younger children and, if possible, send your grandchild the same book so they can follow along with you as you read to them.
  • If video contact is not possible, engage with email or phone calls on a regular basis. Send greeting cards, letters or care packages and always enclose your picture or a picture of you and your grandchild sitting together reading, talking, eating, laughing.

While these suggestions are ways you might more easily engage with your grandchild with autism, they may also be effective to stay in touch with your typical grandchildren. They, too, need your loving support!

Grandparents are Great Resources for Sibling Support

Because children with autism require more attention, therapies and support, the needs of their brothers and sisters are frequently overlooked. Siblings share many of the same concerns their parents have regarding social isolation, the need for information and they worry about the caregiving expectations their parents have for them in the future. Sometimes, they feel resentment, embarrassment and under great pressure to achieve. They are frequently in the waiting room when “family centered” counseling and services are offered and are overlooked by support agencies.

Here are some ways you can help them:

  • Plan to spend special time with siblings and be a good listener. If you provide a safe, comfortable environment, they may express their concerns to you.
  • When siblings argue, try to remember that typically developing children deserve a life where they, like other children, sometimes misbehave get angry and fight. Try not to intervene with statements like “Leave your brother alone. You are bigger, you are stronger, you should know better. It is your job to compromise.” They are already more likely to feel guilty about their sibling’s developmental needs and most siblings have disagreements from time to time.
  • Siblings deserve to have their own personal safety given as much as their brother or sister who has special needs. f they are in vulnerable situations due to aggressive or challenging behaviors, try to provide as much respite time as possible for them. Try to plan activities that will keep them apart and enable you to give your full attention to only one of them at a time.
  • Offer to care for your grandchild with autism so that parents can spend personal time away with their sibling(s). It will convey the message that parents are supportive of all of their children and afford them the opportunity to communicate about their concerns.
  • Important to Remember: One child’s special needs should not overshadow another’s achievements and milestones. Celebrate and reinforce the accomplishments of all of your grandchildren.

You may find more information about sibling support groups by calling your local children’s hospital or go online to these sites: http://www.siblingsupport.org/ and http://siblingleadership.org

Plan Ahead For Summer Visits with Grandchildren

MAINTAIN SCHEDULES

The biggest challenge during the summer is the change from specific routines around school to the less structured days of summer. Try to maintain your grandchild’s usual eating and sleeping schedule as much as possible.

SETTING UP A SUMMER SCHEDULE

Track upcoming summer activities in a calendar that your grandchildren have access to so they can see what is coming up and what to expect.

PREPARE IN ADVANCE

When you plan any activities, try to familiarize your grandchild with anything new or different i.e. show photos or practice the activity ahead of time.

CREATE A BACKUP PLAN

Not every day will be perfect so as holidays approach, develop two scenarios: Plan A if things go well and Plan B if issues pop up.

PREPARE FOR THE HEAT

Cook some meals ahead of time that will save time and it will keep you out of the kitchen when it gets too hot and stock up on frozen treats. Buy fans ahead of time – they are often sold out in the middle of a heat wave and try freezing your sheets!

Supporting Parents Of Children with Autism

1. Be there – sometimes parents just need someone to listen
2. Be Inclusive – include parents with their autistic children in activities you plan
3. Try not to be judgemental – it’s hard to put ourselves in their shoes with all that they need to deal with
4. Help provide respite care – everyone needs a break and parents of children with autism may not have as many opportunities to take care of themselves.
5. Learn more about autism – find out what you can about autism from reputable resources (visit our site www.ganinfo.org)
6. Keep things confidential – everyone will be different about what they want others to know but it’s just safer to keep everything confidential!
7. Become an advocate – advocate for the rights of people with autism for inclusion and understanding and against discrimination.

30 Things Parents of Children on the Autism Spectrum Want You to Know

(an article from Applied Behavior Analysis)

Sometimes our children find it difficult to communicate their challenges to us. This article addresses some of the universal issues they may experience but may not personally share with you.

t is estimated that one in 68 children are now diagnosed with an Autism Spectrum disorder, and yet, this diagnosis remains as misunderstood as ever. We simply do not live in a society that is accommodating or even accepting of those who are not “neurotypical.” Fortunately, parents of autistic children are wonderful at communicating who their children are and why. Below are 30 things those parents of children on the Autism Spectrum want you to know.
Not all autism is the same, and neither is every child with autism.
It’s called the Autism Spectrum because autism actually covers a wide scope of complex disorders in brain development. Included are Asperger’s Syndrome, “classic” autism and  Pervasive Developmental Disorder, among others.  The types of autism range in everything from communication skills, anxiety, social interaction, and repetitive behaviors, among other things. As with any kid, a child with autism should be treated as an individual with his or her own set of abilities and preferences.
Just because my kid doesn’t look like another kid with autism doesn’t mean he’s not on the Autism Spectrum.
As one parent wrote on the popular Autism Speaks blog, “Knowing one child with autism doesn’t mean anything really – they’re all so different. Please don’t tell me my son doesn’t have [autism] because he looks so different from the other kid you know on the Spectrum.”
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