A grand mother and grand father play with their autistic grandchild

10 Ways to Make a Difference for Your Autistic Grandchild

*adapted from an article by Jennifer Krumims*

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.

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?

Step one: embracing the new normal

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 life will take on new meaning. There are therapies, education programs, and dietary considerations that will make life much more controllable for a person with autism.

Yes you can help!

1. Offer support and listen

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 meltdown 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, too often we 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 Thinking in Pictures by Temple Grandin.

6. Give the parents some time off

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 need 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

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. Teach your autistic grandchild to do things on their own

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. For some ideas on how to engage a child with autism in chores check out this blog here.

9. 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.

10. Trust that you are important

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.

A great resource for grandparents that want to get involved is A Grandparent’s Guide to Autism Spectrum Disorders: Making the Most of Time at Nana’s House by Nancy Mucklow.

 

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  1. Mary L Reiner says:

    Our Grandaughter is 7 and was diagnosed with Spectrum Disorder a year ago,my son and his wife leave us totally out of her life,they don’t attend holidays or birthday parties for her cousins,we offer help in anyway we can,her 4 year old sister is also kept from family functions, I need guidance please

    • Mary, family gatherings can often be too much for a child with autism so that is more than likely the reason they don’t attend such gatherings. You can’t take that personally. Even is a person with autism can hold it together during social events, there is often a fallout at home later. Because most people don’t know how to include an autistic person into a social function in a meaningful way, this can also be hard on the parents as well as the child. They may not be able to eat the same foods or participate in games.

      Ask your son what would be a meaningful way to interact? Is it better than just one or two people come to his home at a certain time? Is there a location that the child with ASD likes and would be accepting of seeing people in that location?

      We still struggle with family functions and our kids are 19 and 21. When they were young children, it was near impossible. My daughter would refuse to leave the house and my son would literally have a full shutdown at the event and fall into a deep sleep. We don’t have people over to our house as a rule and only attend a few select events throughout the year. Holidays and birthdays have never been great fun for our family and the pressure we got from my mother made it even harder. We often had to separate on holidays and one of us would stay home with our daughter on Christmas day. If we had been allowed to just stay together as a family without offending anyone, it would have worked much better for us.

  2. my grandson has just been idetified as being autistic at the age of 15. It has taken years of chasing up assessments etc. now the work process to help Ben starts. He is bright and if he takes an interest in a subject he really gives it his all. He was getting no help at school for all we told them what we suspected. He was denied the chance to take graphic design training as his teacher daid she was of the opinion he wss not up to the training. We feel let down by the UK system.

  3. Brenda Chalk says:

    Are you bringing the Grandparents Guide to ASD to the conference? We suspect that one of my grandchildren may be on the spectrum. The pros say global developmental delays, but some of the OCD things she exhibits, I don’t know. We use a lot of the same strategies for her that I use for the children with ASD that I work with. Any info can help. It’s different working with these children professionally than it is if they are in your family.

    • Brenda, I can certainly bring that book to the Calgary conference no problem. Most materials that we use in ASD are good for a whole range of diagnoses. Good practice and ideas are just that – good for many people!

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