‘Autism is isolating’: Mom lays out clear cut ways to help maintain a sense of ‘community’ for severely autistic daughter

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“Autism is isolating. When my oldest, Celia, was a baby, I was the captain of the Little Cuties playgroup in Windermere, Florida. We met at homes for specially themed playdates with food spreads and activities, and we congregated at parks with our diaper bags and picnics. Basically it was sorority life for 2 year olds and a chance for us moms to talk in full sentences. To any new parent out there… I highly recommend it. It will keep you sane.

But when my youngest, Sadie, was around 18 months old, it became more challenging and less motivating to put myself in situations with six other toddlers who were developing at a different rate than my own child. When moms were talking about the words that were coming… my brain was racing with the words that were dropping out of Sadie’s repertoire. When moms were chatting on a bench watching their kids, I was hovering preventing Sadie from danger. I certainly did not add value to any conversation. That year I RSVP-ed less and less until I officially fell off the invite. To illustrate the shift another way… Sadie’s first birthday celebration was standing room only, and her 2nd birthday party was just my family of four. We were alone in this journey.

Regan MacKay Lister/This Is Autism

Now, I hope you can see how most of this was my doing. The effort to fit in with a situation that was just a completely different shape than the norm was just too much. I stepped back and most people did not notice. Honestly, we were no longer appealing. We were the distracted parents with a messy, deregulated child. Not exactly the perfect house guests.

‘People often ask me what is the hardest part of having a child with autism. The irony is, it’s not the child with autism. It’s my other child.’

Her ‘disability is invisible’: Mom painstakingly navigates outings with daughter who has severe autism

After reading my #thisisautism daily posts, perhaps your perspective is shifting and you want to know how you can concretely help families going through similar situations. Some of you have even private messaged me with this exact question. I have been meditating on this and considering the best way to respond.

I think everyone needs the same thing: community. We need to matter to people. If you know someone struggling with their severely autistic child or even a quirky child that just has social difficulties — I would tell you to reach out and include them. They need people too. Invite them over like you would any other family, just take 10 minutes to sweep your home and remove the breakables. Prep your kids. Tell them to seek out what they have in common rather than what feels so different.

When Sadie was 3, we relocated and my husband, Brewer, and I began looking for ways to make our family life work for everyone. We moved to a neighborhood and a loving school and felt the influence of community. We have since moved but I will never forget the support I felt.

Here are some memories of how friends and acquaintances reached out and helped us. I hope these examples prove to be the best answer to your question: ‘What can I do?’

-During Celia’s 1st grade piano recital, I sat in the back of the church with Sadie trying to keep her quiet during all the performances. Right before it was Celia’s turn to play, ‘K’ popped up on the pew and without a word told me, ‘I got this, go take a seat upfront.’

-My friend ‘J’ and her family joined my family on a week long cruise (so brave). Rather than pretend like she wasn’t noticing all the strangeness, she asked sincere questions about autism and about how to explain it to her son.

-Three of my friends tag teamed and watched Sadie on my 40th birthday so that Brewer, Celia and me could have a calm day at Universal Studios. They told me they were conflicted between telling me it was easy so that I would accept the offer again, and telling me the truth and acknowledging what I must experience daily.

-My friend, ‘K’ taught me to break into her backyard in case I ever needed a fenced enclosure to just breathe and let Sadie run.

-My friend ‘Y’ always, always greeted Sadie and encouraged her children to say ‘hi’ too.

-My neighbor ‘B’ would regularly invite us out to play with her dog. This made Celia happy and gave Sadie the opportunity to interact.

-My friend ‘J’ gave me a special shirt for Sadie’s birthday. Just acknowledging her felt amazing.”

Rare Love Photography

This story was submitted to Love What Matters by Regan MacKay Lister of Hummelstown, Pennsylvania. Her 7-year-old daughter, Sadie, has severe autism. Lister has been writing a post a day on her This is Autism Facebook page explaining her family’s life with autism in honor of autism awareness month. Read some of her posts below:

‘People often ask me what is the hardest part of having a child with autism. The irony is, it’s not the child with autism. It’s my other child.’

Her ‘disability is invisible’: Mom painstakingly navigates outings with daughter who has severe autism

‘It’s stressful to throw money at something that has almost invisible results’: Having a child with severe autism affects your marriage

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