Grandparents on the Autism Journey

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By Holly Bortfeld

Being a grandparent is one of the most wonderful parts of life for many people. We hear “I can’t wait to be a grandparent and spoil the kids rotten” and “I can’t wait to take them fishing and teach them everything!” from prospective grandparents all the time.

Enter autism. BOOM.

“What do we do?”

Most of us knew nothing about autism before it entered our lives so no one expects you to be an expert at all things, or anything, autism. It’s OK to say “I don’t know, but what can I do to help?”. In fact, that’s the best thing you can say. What one family may need can be vastly different from the next and in the early stages of a diagnosis, honestly, even the family may not know what they need, or how you can help, so just being supportive, listening and showing you care will mean the world to the family.

Like the parents, you may have to put on hold, or give up, your preconceived notions about how you will grandparent and what your role will entail. That’s ok, life is just checking to see how well you can adapt by throwing a wrench into your perfectly laid plans. Remember, it’s happening to everyone – the parents, the siblings, the child, aunts and uncles, etc., this isn’t about you at all, but your support will be priceless.

So what can you do?

We asked our families about what the grandparents in their lives did that they appreciated the most. Some of the things they said:

“My mother moved in with us to help with the day to day, both with our Autism Spectrum Disorder (ASD) child and the siblings who were getting lost in the shuffle. She watched every therapy session at the beginning and has become one of our best 1:1 therapists!”

“A few months after the twins were diagnosed, I ran into my in-laws at the grocery store and of course the kids were screaming at the time, and I was trying so hard to just get my groceries and get out of there. Ever since, my in-laws come the house once a week to run errands for our family, including the grocery shopping. It’s wonderful.”

“My parents moved down the road from us so that they are close enough to come to the house every day pretty much. They help with the kids, dad helps with things around the house – without even having to be asked – he just sees a need and does it. My mom too, if there’s laundry, she just starts a load, instead of commenting that there’s laundry piled up. It’s been such a blessing to have them here to help.”

Now, not all people are retired and can just up and move, but the most recurrent comments were:

  • Be supportive.
  • Learn how to do the diet – and NO cheating. Yes, that non-diet cookie CAN actually hurt them.
  • Listen. Love. Speak hope. Parents are already fearing the worst, be the voice of hope.
  • Don’t take the child’s behavior personally. Our kid’s behaviors can be tough but you have to learn to separate the behavior from the child. He doesn’t hate you (or anyone), it’s just the autism. Find a way he can play or engage with you. Enjoy what they can do, rather than focus on what they cannot. Don’t be offended by literal speech. Know that our kids don’t learn intrinsically, so if you didn’t specifically teach every step in a task, they probably won’t know to do it.
  • Get trained to provide a needed therapy or become part of the therapy team, even if it’s just chauffer.
  • Learn the signs of autism (Asperger’s, hyperlexia, hypotonia, etc) so you know what you’re seeing. Encourage and embrace getting a diagnosis, because it means now you know and there will be services, and treatments.
  • Don’t take over. We are the parents, and treatment choices are ours to make. Bring ideas but only the parents get to choose the path.
  • If the kids come to your house, make any home modifications needed for visits to prevent eloping and a safe environment, especially with food.
  • Change holiday traditions if needed. Many ASD kids cannot tolerate typical holiday parties. Make modifications to include them.
  • Become a team. When everyone works together to do what’s best for the child, everyone wins.
  • Celebrate every victory, no matter how small. Yes, it might take years to teach your grandchild to ride a bike instead of a day, but it will be amazing when it happens!
  • Forget the old ways of ‘never question authority”. Question everything coming from the establishment when it comes to your grandkids.
  • Practice patience. Autism is a ‘One step forward, two steps back’ kind of dance sometimes. Remember, it’s a marathon. Not a sprint.
  • Treatments don't work overnight. Be patient and supportive.
  • Babysit the siblings. Take them out to do fun stuff or stay with them so the parents can focus on the ASD child’s needs during appointments.
  • Help advocate for funding and autism related issues with local and federal legislators.
  • Open your mind. What was “known” about autism 10 years ago has likely already been disproven or greatly updated.
  • What you knew about raising neurotypical kids means little to nothing when it comes to autism. The same goes for the parents. They may have other children and what they knew about raising them won’t apply for a child with ASD.
  • ASK what they need.

Ways to get involved with autism
Many families don’t live close enough to offer physical help, but there are still ways you can help and get involved.

  • Attend your local TACA meetings, Coffee Talks and events. Volunteer if you can help.
  • Volunteer in a local school’s ASD classroom.
  • Skype/Facetime routinely with the family, as autism can be isolating.
  • Attend local ASD events and conferences alone or with your child. Or even watch the grandkids so the parents can attend the conference.
  • Forget what’s age-appropriate and send gifts the child will like. If you are not sure what that is, ask the parent to set up an Amazon Wish List or retail store “registry” of what they need.
  • Spend special time with the sibling(s) – take them on a trip, or have them come to you for a visit, as it’s easy for siblings to get overlooked.

Financial Help. Autism is VERY expensive.

  • Help with autism-related bills.
  • Set up an account with the special doctor to help pay office visit costs.
  • Give money to the child’s Special Needs Trust (or pay for the setup of the trust).
  • Consider setting up accounts at vitamin/supplement or food companies for the family so they can order and you can pay. Do this for therapies too, such as horseback, music, vision, etc that insurance will not cover. Whatever you can afford will be appreciated.
  • Offer to pay for swimming lessons. Every year.
  • Buy them a TACA+ Membership so they can access the webinars 24/7 and get great discounts.

Ways to Donate to TACA:

 

Grandparents are an important part of the family and can greatly assist in the autism journey. Thank you for helping your family and being part of the solution.

Recommended reading:
According to this study, Grandparents reported being the first to notice a problem with their grandchild's development. Fourteen percent said they and their grandchild's family had moved closer to each other in order to take better care of a child with autism. Seven percent said they actually combined households. Many grandparents provide financial support, with 57 percent saying they contributed money every month for autism-related expenses that are not covered by insurance.

Learn the signs and what to do if you think your Grandchild may have autism.

Grandparents Must Be Part of the Journey

Grandparents of Children with Autism: Top Ten Suggestions

Diet Infringement or Infraction Help

Talk About the Holidays

Revolutionary Grandparents: Generations Healing Autism with Love and Hope