Information for: ● grandparents caring for grandchildren with autism ● grandparents who have custody, or are in the process of obtaining custody, of their grandchildren with autism (also known as "kinship families")

12 Ways to Make a Difference for Your Grandchild with Autism by Jennifer Krumins, Autism Aspirations reprinted here with permission from the author You are a grandparent! Nothing can compare with the boundless love that a grandparent feels for their grandchild. No longer limited by the need to juggle work, home, school and raising children into mature, self reliant adulthood, the gift of grandchildren is one of life's greatest blessings. But life doesn't always deliver its blessings in the package we expect. The diagnosis of autism is for many a jolt into a new world; one that many have not even heard of or at least have no knowledge. Autism is a mysterious and heart breaking neurological disorder (occurring in the brain) that occurs in 1 in 150 children. It shows itself most prominently in impairments in language, communication, behavior and social relationships. For parents, the diagnosis tears at our hearts and brings the future crashing down (at least for a time). This is where grandparents come in. You have awaited the news of your grandchild for months, maybe years and now the gut-wrenching truth is almost too painful. Your children are suffering. What could be worse? I know you want to help because you are reading this. You want to find a way to ease the pain. Your adult children need you. You cannot cure the autism or somehow make it disappear, even though you would love to. But you play a role that is critical and you have the power to make life more manageable for your children and your grandchild, or you can undermine their challenges and exacerbate an already fragile situation. Autism cannot be cured. But, time will show that it is not a "death sentence." Life will find a "new kind of normal" and will take on new meaning. There are therapies, education programs, and dietary considerations that will make life much more manageable for a person with autism. So, you want to play a positive role in the life of your grandchild with autism? Here are a few tips that will certainly get you started on the right track: 1. Support your children in their efforts to come to terms with and negotiate this challenging path. Listen, affirm and avoid offering quick judgments and /or solutions. What parents need most is to be supported and to feel affirmed that they are good parents and they will be able to cope; they are not alone. 2. Accept and love your grandchild for who they are now, not what you want them to be. This can be tall order when you are in public and a full-blown tantrum is underway! Remember, this is not a child that is misbehaving; he or she needs to tell you something and is not capable of it. Loving our children means interpreting their behaviour to find the message behind it. 3. Avoid judging or blaming anyone or anything. As humans we too often find ourselves searching for a reason or something on which we can lay blame. In the larger picture of your grandchild's emotional, physical and intellectual growth, negative energy is simply wasted energy. Positive energy seeks to learn, to understand and to support what is. Autism is a neurological disorder. Parents cannot do anything or fail to do anything that would leave their child autistic. Suggesting otherwise is cruel and utterly wrong. 4. Support financially when possible. The education savings plan that you have begun may need to be used earlier than expected. Therapies, programs, resources and respite care are costly and yet they are the critical ingredients to making the lives of your children and their children with autism better. Listen to what your children are saying they need. Quietly reassure them that you will help in any way that you can. 5. Learn as much as possible about autism. There are many excellent resources on the market. The goal should be to increase understanding of the child's communication, social and behavioral presentation NOT to find a cure. Information on how children with autism see the world and how they learn will do wonders for helping you to connect with your grandchild. One of my parent's favourites is Autistic Thinking: This is the Title, by Peter Vermeulen. 6. Offer to spend time with the children or provide the financial means to have the parents have time on their own. Don't wait to be asked. Your child's marriage and mental health needs as much attention as does your grandchild. It is an investment for the whole family when you provide the regular opportunity for relief. Gift certificates for movies, dinner, spa, and fitness clubs are a way to "force" a parent to take time for him or her self. Most parents will never quite get around to taking care of themselves. A homemade meal or a house cleaning can go a long way to easing stress. Take care of your child so they can care for your grandchild. 7. Spend time with the siblings of the child with autism. Or, provide care for the child with autism so that parents and typical children can reconnect! So often, life at home is centered on the child with special needs that siblings can get "lost in the shuffle." Special days away or planned activities give siblings the relief that they need from a busy household. Our other children need to know that it is healthy to take a break from caring for a person that needs a lot from us. 8. Give your grandchild the opportunity to develop self esteem by teaching them how to do things for themselves rather than doing it for them. It is so tempting to do things for our special needs children. We can easily feel that "our babies" must deal with so much already that it seems cruel to say, "You can do it!" But be aware that being overly nurturing can sabotage a child's opportunity to learn to do something and feel the sense of accomplishment and pride when they get it! No grandparent would want to chip away at a child's self esteem. When you guide your grandchildren through each small step and encourage their attempts (even if they are off the mark) you are building their internal sense of self and that is a gift of a lifetime. 9. Communicate to the child with autism with short simple sentences. If you want your grandchild to do something it is best to state it specifically rather than ask a question. For example, instead of asking, "Do you want to rake the leaves with me?" it is more likely that you will get a positive response if you say, "Come rake the leaves with me. You can help me." People with autism are often quite literal in their thinking and if we pose statements as questions, we may get a response that we did not intend. Avoid being loud, talking quickly and giving multiple steps. Your grandchild will most likely not be able to process all of your verbal instructions and they may ignore you or become very agitated. 10. Pictures, lists and diagrams are far more meaningful to most people with autism than words are. If your grandchild is upset or seems to lack understanding of something it is useful to draw a picture/diagram, list the steps that will happen or use a picture schedule. For example, a list might say: 1) Play at park. 2) Snack. 3) Brush teeth. 4) Bedtime. OR even more specific: 1) Eat snack. 2) Brush teeth. 3) Read story. 4) Sleep. 11. Respect the expectations and limits that parents set up. Raising a child with autism demands a structure and routine that is essential for the child's peace of mind. Follow dietary restrictions, bedtimes, routines (no matter how odd they seem) and communication guidelines that the parents set. People with autism may have trouble coping with changes in routine, food, sleeping arrangements, toileting, etc when they are in your home. This is not because they are behaving poorly. This IS NOT a discipline (or lack thereof) issue. It is an autism issue and it needs to be treated as such. 12. Trust that you can make a deep and life changing impact on your grandchild by being the support that his/her parents need. As grandparents you may feel helpless and completely at a loss as to how to help. In reality, you do have the potential to make a huge difference whether you are physically near your children or not. Support, affirmation and love are what will get your child's family through the challenge of raising a child with autism. About the author: Jennifer Krumins is a full time teacher in Peterborough, Ontario with experience in special education and in the main-stream classroom setting. A mother of three (one of whom has autism), Jennifer currently teaches severely challenged teen boys with autism. Jennifer is also the author of Been There. Done That. Finally Getting it Right. A Guide to Educational Planning for Students with Autism: Lessons from a Mother and Teacher Visit Jennifer's website at Autism Aspirations or email her at Would you like to assist Jennifer with research for a new book she is writing? Take a few moments to complete a survey about grandparents of children and youth with autism. Click here for details. Back to top

Kinship Families "Kinship care" is defined as the placement of a child in the home of the child's relative or in the home of another adult with whom the child or the child's parent already has a close emotional attachment. Kinship families include grandparents who have custody of their grandchildren or are in the process of obtaining custody of their grandchildren. 58% of kinship families consist of a single grandmother, raising one or two grandchildren with special needs, including autism spectrum disorders. For more information: ● CANGRANDS National Kinship Support: a non-profit organization that exists to provide support, education and empowerment to grandparents who are raising grandchildren (as well as other family members caring for their extended family) ● CANGRANDS Support Group: a kinship support group meeting from 7:00 pm to 9:00 pm at the Super Store at Taunton Road and Harmony Road in Oshawa on the following dates: Tuesday, September 16 Wednesday, October 22 Wednesday, November 19 Wednesday, December 10 Note: take the outside stairs to the second floor above the Super Store located in the Wal-Mart complex For more information, contact Linda T., Durham Kinship Chapter Leader: 905-404-8900 ● 100 Huntley Street broadcast with a focus on kinship families (September 2008) "CANGRANDS" filmed at CANGRANDS Annual Conference & Camp-out Note: the broadcast is 60 minutes in length; the CANGRANDS report can be found between the 13:46 to 24.40 minute marks ● W-FIVE documentary about kinship families (February 2008): "Parent Again" Part 1 (video 9:53 minutes) Part 2 (video 9:48 minutes) Article ● CBC Radio documentary about kinship families (September 2007): "Call Me Nana" Back to top

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