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A Thousand Steps

Journey  never stopsBy Cathy Jameson

Did I tell you?  He’s sleeping through the night. 

Oh, that’s great! 

He wakes up dry, too.

Even better! 

How are his mornings?  Do you get much done?

Well, after I prepare his foods and feed him, he gets just a little break.  Feedings can be tricky because he’s gotten picky about some foods.  After breakfast is over, it’s time for therapy.

Ahh, yes.  Feedings.  I remember those days.  I’m sure he’ll come around. 

How many hours of therapy does he need?

Actually, if he can tolerate it and won’t need to rest midday, we’re going to increase therapy hours after the new year.

That’s wonderful!  What are his latest milestones? Anything finally clicking?

He’s learning to communicate his wants better, and almost staying with an activity through to completion.  He’s showing more signs that bathroom skills may be the next big thing…

Like sitting on the toilet??

Wouldn’t that be a dream come true! 

It would.  Do you think he has the motor skills for it?

I do, but the big question is does he have the sensation for it.  You know, when he’s doing something he wants to do and is really engrossed in the activity, it’s like he can’t even tell he’s soiled his diaper. 

I’ve heard that before.  What else?  Any other self-help skills he’s close to mastering?

He’s getting there…clearing his bowl and plate from the table, tucking in the dining room chair he just sat in, helping make his bed, putting dirty laundry in the laundry room…some basic, typical skills.

Typical is right…and great that he is made good habits about them!  He’s worked hard to get to that point.  You have, too, you know.

Thanks for saying that.  It can be hard, but imagine the possibilities when he gains just a little bit more independence.  I know he wants that.  He wants it as much as I do.

I know you do.  It’ll open a whole new world for the both of you.  So, new skills, what’s next? 

I’d like to see more communication, like back and forth conversation-type communication.  None of these one-worded responses.  That’s been great, but I know he can do more and tell us more.  It’s a matter of how to draw that out of him effectively without causing frustration.

What a great goal.  I’m sure he’ll be able to get there.  What have you always said, you guys take baby steps to help Ronan be the best Ronan he can be. 

Yeah, baby steps.  We’ve taken a lot of little baby steps since he got sick.  One foot in front of the other.  Sometimes we fall, both of us, but we always pick ourselves back up.  It’s sometimes an uphill climb, but baby steps have gotten us this far.  I wonder how many steps there’ve been…

Journey steps

--

At first glance, a reader may say that that conversation was between two mom friends describing a typical young preschooler.  But it wasn’t a preschooler’s mom chatting about her son’s gains.  It was me talking, the mom of an almost 16-year old who has regressive non-verbal autism. 

Depending on who’s on the receiving end of getting that information above, relating Ronan’s latest gains and sharing my goals for him can be rewarding.  It can also be quite sobering.  Over the holidays, I’ll be prepping for an upcoming conversation that will include disclosing Ronan’s latest skills and development.  It’ll have me talking about what he can do and about how far he’s come in the last year.  The information I offer will be inputted into an evaluation form that will hopefully lead to more hands-on, developmentally appropriate and maybe even some age-appropriate opportunities.  On paper, Ronan is years behind.  But I’ve got my fingers crossed that he’ll get the support he needs so he can keep taking those baby steps.  They’ve helped him perfect some important skills.  They’ve reminded me to keep optimistic.    

As with appointments like the one I’ll soon have, I’m looking forward to sharing all of the positives.  I jump for joy when I get to talk about all the skills accomplished and gains Ronan’s made.  That won’t change.  But there’s a flip side that I’m starting to dread.  With these kinds of appointments, I’ll also have to share what my child can’t do.  As hard as it is to go back in time to when Ronan’s skills stopped, I have to do that.  I have to bring the evaluator up to speed with what happened to him and when.  I have to share that he was once developing typically, but then he wasn’t.  He was on track with reaching milestones, but then he couldn’t.  I’ll have to talk about the regression, the loss of language, the medical issues that popped up then and the ones that pop up now.  I’ll have to remember to share what therapies worked and which ones didn’t.  I certainly won’t focus on the emotions that have come with each diagnosis or that Ronan’s future and my future may not turn out the way I’d imagined they would.  But if I leave anything out, Ronan could lose out.  I’d hate to be responsible for that.  He’s lost out on so much already. 

--

He looks pretty good today.  I’m glad you guys are in a good place.

We are.  And you know me.  Thinking about the changes and the new routine this therapy will bring makes me feel a little hopefully ever after. 

Hopefully ever after.  That is so you.

It is, isn’t. 

If I don’t keep hopeful, I may want to stop in my tracks.  So, just like Ronan, I, too, continue to take baby steps.  As long as we keep moving forward, I think we’ll both be alright. 

Cathy Jameson is a Contributing Editor for Age of Autism.

 

Comments

Marie

I know and have faith he will be restored to health and independence and your heart fully healed. Thank you for sharing this. To read this is a true Christmas gift in the ongoing roller-coaster of recovery from the injuries. What courage and what an incredible human being to persist each day to reclaim and show his true identity which God NEVER intended to be one of being trapped. I pray for him every year and am convinced of his recovery no matter how long the journey. I pray for your family to receive the abundant resources. The amount of work, faith and dedication is beyond words. Never give up and never give in. May you find wisdom and resources needed during the times that are the most confusing and with seemingly insurmountable barriers. Sleep is first step in deeper recovery as you so aptly described. This is truly amazing.

Mark Brown PA

Also these Billionaires that are in FOR THE CURE? GENETICS and other ideas?
Bill Gates-Google-Bezos-Zuckerberg---WE NEED THEIR TOP 100!
Hiding gmos is really bad--it says they know best....NO--Let's see your Top 100.
You are making the whole plant act like a PESTICIDE with your Genetics!!
All the contamination from #GMOs --contaminating+killing our Bees+Butterflies etc.

One simple solution--DO AUTOPSIES--Experts who know FUNGUS. Was it Cancer or Fungus?
Was the Asthma a Fungal Infection? Brain Tumors--Seizures...is it Fungal related?
MS+Fungus+Mr Monsanto. RomneyCare+we hate ObamaCare 60+ times.
SEPSIS+FUNGUS YES--PRE-EXISTING-CONDITIONS? PREVENTION GO OHA ⏰💚

Gayle

Cathy, you are a wonderful mom and Ronan will keep taking those baby steps one by one to master more and more skills as time goes by just as my son is doing. Good luck and God Bless.

Brian Nomi

I love hearing about Ronan. Never forget that there is hope for the future. Tomorrow can be better than today. and to quote Sarah Carrasco from The Autism Helpbook, "NEVER GIVE UP." Thanks for writing!!

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