Frightening Parallels
PART FOUR Autism: Thirty years of lies and cover-up

Definitely Blessed

Older parentsBy Cathy Jameson

I love our dentist.  She’s a friend of the family and greets us all like we are the biggest superstars on the planet when we see her.  She’s watched my kids grow and has the best compliments for each of them.  When she sees me, she gushes about how beautiful and wonderful a mother I am.  I don’t always feel like a beautiful, wonderful mother, so I tell her I’d love to put her in my back pocket and take her everywhere, especially when I’m having a bad day.  I’d take her out and let her fill me with compliments to help boost my spirits.  It’s a joy to schedule all of our dental appointments because she’s full of positivity every single time I see her.

Except at my appointment last week…

That’s when she shared that another patient of hers, also a mother to an adult child with developmental delays, was experiencing some frustration.  It wasn’t that this other woman’s child wasn’t receiving services.  They are.  It wasn’t that this adult with special needs wasn’t thriving.  She was.  It was that this other mother is aging.  And she’s much closer to the end of life than the beginning.  She carries a heavy worry like so many other mothers carry – when she’s gone, who will take care for her adult child who needs care 24 hours a day 7 days a week?  Her close friends are elderly as well and physically cannot help.  Her younger family members have said they would not help.  I couldn’t speak, not just because my dentist was doing her exam on my teeth, but because I was stunned to hear that this other mother had no family support.    

After the dental exam ended, I said, “That’s why we have to live forever!”  My dentist agreed.  While not an adult child with special needs, she’s helping provide some of the round-the-clock medical care for an elderly family member who lives far away.  We both commiserated at how helpless we sometimes feel when it comes to being physical there to assist extended family.  But we also stated that we’d do whatever we could for them, including from a distance, while we’re still living. 

We talked a bit more, shared a bit more, and she ended the conversation with that positivity I always love to hear.  After telling me about a recent trip home to see her family, she shared, “I’m definitely blessed…” 

I told her that I was, too.

Last week, I gained a part-time caregiver for my son.  I secured another one for another few months as well.  I feel beyond blessed with that news!  Since August, I’ve had several helpers helping me with Ronan.  But not everyone could work a set time, which made my calendar a bit messy.  One could devote 4 hours, another only 2.  Someone else could do mornings, but never afternoons.  I couldn’t work a consistent schedule, which made meetings difficult to arrange.  Knowing our family’s needs, I was given extra time to get things done at my job.  Those I reported to were incredibly patient with my unpredictable schedule, another blessing for sure. 

Midway through December, though, with the jigsaw puzzle of a caregiver and work schedule, I started to panic.  I can’t keep doing this one day I’ve got coverage…the next day I didn’t.  Since it was starting to be more and more difficult, I prayed that God would provide.  He had by bringing us four helpful helpers who came together to get done what needed to get done.  In doing that, He direct me where I needed to be each day – at work.  But I was desperate for some consistency.  And Ronan needed that as well.  Starting to get a little less patient with the ‘who’s here—who’s not here’ routine, I prayed for a kind, caring, compassionate caregiver for him.  

Once again, God provided. 

My schedule will be a bit all over the place as we train our new hire.  A few more wonky days won’t break us.  Plus, having this new person widens the circle of trusted adults.  None of our previous helpers have signed on the dotted line to be someone who will provide care to Ronan when my husband and I no longer can.  But the circle of trust grows.  And not just for us, Ronan’s parents, but for our other children.  They know several of our current and past caregivers they could immediately lean on in the future. 

Our kids know that at some point in their adult life, Ronan will be part of their every day – be it decisions they will make on his behalf, be it providing his direct care, or be it overseeing care that will be provided by someone else they chose for him.  Life hasn’t gotten to that point, but we have begun that important conversation with them. 

I imagine a lot of you have done the same.   

The elderly mother my dentist knows finally has a plan in place, but it wasn’t her first plan, and it will require leaning on a program, not on family.  I pray she is a peace with that and that those caregivers within the program are only kind, caring and compassionate.  If you have definitely been blessed with someone who has signed on the dotted line to be your adult child’s forever caretaker, can you give some words of encouragement to those who have not secured that yet?  Share in the comments what plan you have in place in case your knowledge can help another parent.  What a gift it could be if we can help lessen some of the worry another mom or dad is carrying.

Cathy Jameson is a Contributing Editor for Age of Autism.


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Gerardo Martinez

Great Post on a necessary topic. We are not getting younger. Who will take care of them? Our healthy children we know will be ok, but our special needs one. That can keep us up late at night. We pray family will come through. We have so much involvement in their lives. Not being around in the future can seem overwhelming. It is best to have plans in the works. Thanks again!

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