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Even More Autism Action Ideas for the Month of April

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By Cathy Jameson

I may not always feel strong enough for a lot of what I’ve had to handle, but God’s timing on my journey here is absolutely perfect.  In a moment, especially a frustrating moment, I sometimes may not realize that perfect timing right away.  But blessings have a way of finding us.  They did years ago when I found this community.  They do even now.  I never take any of the gifts my family has received, be they spiritual or otherwise, for granted.  I found that to be true again when an unexpected blessing came my way last week.  An unexpected phone call.  That unexpected blessing.  Followed by an unexpected wave of emotions.  It was something to be thankful for once more. 

If I had to describe it, it wasn’t just a blessing.  It was also autism action in action. 

I’d planned to write about autism action for this weekend already.  I wanted to reshare a post I’d written back in 2014.  It was inspired by people who’d helped us because they’d heard that the autism we lived wasn’t like what was being portrayed in cheery news stories.  The news stories showcased only positive outcomes; they rarely – if ever, shed light on the kids who wouldn’t grow into independent adults.  People who knew us knew that my son’s diagnosis paled in comparison to those featured, and they wanted to do something to help me help him.  They wanted to help me help my other kids as well.  The assistance wasn’t just physical assistance, like shuttling my typical children to their typical activities; it was also spiritual and emotional assistance being offered to me and my entire family. 

It’s a very humbling experience to be on the receiving end of that kind of support. 

This year, I’m finding that I need more support than previous years.  For so long, I’d been able to be the helper for others.  As the helpee I have been quick to say yes when someone asks, Hey, Cathy, do you need anything right now?  “Ohmygosh, YES!  I do,” I’ll say.  Friends and those who personally know our story have been so very generous with us, and I don’t mean financially, although those gifts have always been a Godsend.  Other gifts are ones that have promoted autism action, like when people checked in to see if Ronan is okay after they’ve heard he’s had a rough day.  They check to make sure I am okay, too.  They’ve asked if I’m sleeping well, if I need a meal delivered, or if they can drop off some groceries to us.  Some still ask if they can pick up my typical kids from their typical activities while I tend to Ronan.  He isn’t as busy as he was when he was in all sorts of therapy, but his health is still a concern.

It can be unpredictable, too.

Ronan had a mito crash just the other day.  I knew he’d sleep at least 2 hours that afternoon.  He slept for four!  Since I don’t wake him when that happens, I had to pause everything I had planned after 2:00.  I had to quickly rearrange the after school pick-ups and drop offs I was supposed to do after 3:00.  I had to remain calm in the midst of the quiet storm that knocked my kid right off his feet past 4:00.  You’d think I could’ve gotten a lot done while he slept until almost 5:00, like some housework or some filing, but those kinds of afternoons can be paralyzing.  It all worked out, like it usually does, but the next day a friend said, “You should’ve called me.  I could’ve helped.”  In the moment, in that worrisome moment of watching Ronan grow so very tired, I forgot to ask for help. 

I will remember to ask next time. 

For those who do want to assist families like mine, I am so thankful that you see us struggling and that you immediately want to do something to relieve the struggle.  Just knowing you’re willing to jump in helps.  Since we are still in this month that features autism, I wanted to share the original 30 autism action ideas I shared several years ago.  I created that list hoping that families might be able to get a little bit of a break.  I didn’t know how far those suggestions would go, but the list was translated into Spanish soon after it was posted.  Two years later, when autism was in the spotlight again, I thought of 6 more ideas

Because continued rising rates can mean more families might need more help, here are just a few more things people can do: 

- find out if the child would benefit from updates/upgrades to any electronics he or she uses – a keyboard, letter board, or voice output device (simpler action idea – offer to send a gift card for Google Play or the App Store)

- send a meal prep kit subscription – those would be a dream for any busy family.  They could be a lifesaver for when the day doesn’t go as planned or when mom or dad’s focus must be on the child with autism, not on making dinner (simpler action idea – offer to send an Uber Eats or Door Dash gift card)

- it can be daunting to be a caregiver, but could you do a ride along?  Some parents need help with simple errands.  If they can’t leave their child at home, ask to go with them into town.  Sit in the car while mom or dad quickly runs in to pick up the dry cleaning, to deposit a check, or to pick up some take out.  (simpler action idea – if these places are easy for you to get to, offer to do the errand for them)

- search Amazon Smile for a local autism/special needs groups’ charity page and shop through their link.  You shop.  Amazon gives.  When they give, the entire group can benefit.  We have a link here at Age of Autism https://smile.amazon.com/ch/47-1831987?ref_=pe_732550_472158300 and would love it if you’d consider shopping under ours.   

--

This past week hasn’t been the easiest week for me.  I didn’t know how I’d get through it while dealing with one thing after another.  I very much needed a break.  After thinking that I needed a break was exactly when we were unexpectedly blessed.  The person who shared the blessing had no idea what kind of impact that had on me and my family.  

One small act. 

One meaningful share. 

One positive idea. 

It helps.  It really, really does.

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

Brian Nomi

Keep up the good reports. I love hearing about Ronan.

Joanie Calem

Beautiful, practical, real list of needs. Having an adult son with "high functioning" (what a misnomer if there ever was one) autism, makes people say things to me like, "oh he's finally launched yay!"...with no clue that there will never actually be a launch, there will never be a day that I don't spend hours on the phone or at his place helping him put things in order, remember what to do, remember how to negotiate the world. Every day will continually be a crap shoot of can he get through the day without a massive meltdown that leaves him and everyone around him exhausted and sad. The emotional toll of the rollercoaster that will never end.

MamaBear

If it weren’t for 3 hugely special April birthdays, I would gladly cancel this month—just so I don’t have to explain why I hate hearing those upbeat autism stories.

“Come, join us as we answer the call to … awareness?” Nope.

Thank you Cathy for the reminder that “It’s a call to action!” It’s a call to love!

not the reality for many

Sounds like this woman has many people she can reach out to such as friends and family. She's lucky. Please keep in mind many caregivers, especially those with very severe adult individuals, have no help. Family and friends abandoned them long ago and the reality is that services in the adult world provides little help. There is no one to reach out to for many people. I see this a lot so please don't assume it's as easy as is written here. It's a sad reality for the majority of caregivers that they are not surrounded by numerous typical children, supportive spouses, wonderful neighbors, loving families and competent educators or service providers. As much as so many caregivers wish it were this easy, that's far from their reality.

Gayle

Cathy-people who do not have more challenged children with autism have no idea how hard our lives are every single day. They don't know how difficult it is to manage our daily lives in addition to taking care or our very needy and dependent children. My son is an adult and is still very dependent on us for all of his care and it is demanding and exhausting. I have some days when I don't know how we can keep up with such a difficult and demanding life and get very depressed and anxious thinking about this fact. You are very lucky to have so much support from very caring people around you to help you in so many ways. We do not have that kind of support so must rely on each other to take care of our son and everything else we have to do every day. Our older son is here at home and is a great help to us with everything, including his younger brother. My mom and dad were a great help, but sadly, are no longer here to help and support us and I miss them more than words can express. God Bless all of us and our very special children.

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