Tuesday, April 3, 2018

1 of 36

So, another day, another post.  And, yes, another post about April and autism.  Don't worry, today's is short.  No rants.  No complaints.  No doom and gloom.  Well, maybe just a small reference of doom and gloom:  

1 in 36. 

That's the official autism rate.  Updated numbers haven't come out for this year yet, but I have a sinking feeling that more will be more added to the mix.  For you number crunchers out there, you know as well as I do that those "official" CDC numbers are not as accurate as they should be.  So, take that 1 in 36 rate with a grain of salt. 

1 in 36.  

It's truly overwhelming for me to think about that rate.  

But today, I woke up happy.  I don't want to think about doom and gloom today.  I want to think about things that will remind me to be hopeful, that will remind me to be helpful to others.  So, I looked at the number a bit differently. 

36.    

That's 30 + 6.  

Hey!  That's exactly how many ideas I've shared over the years during this sometimes dreaded month of April!  The first post was a whole 30 days of ideas* meant to support both a child affected by autism and their family.  The second one included 6 more!  That's a whole lot of helpful, hopeful, incredible opportunities to be had, and not just for the child, but for the giver as well.  

Of course, there are many other ways to assist a family.  If you have any ideas of your own, feel free to share them in the comment section below.  

April 1st and 2nd are not easy days for a lot of us.  We don't celebrate a diagnosis.  We don't embrace the struggles.  We do, however, love our children and greatly appreciate the help we receive from loved ones.  I have already personally and publicly thanked my own family and friends for all of their support, but holey moley, I must thank you again....thanks, family and friends!  Thanks for your kindness, your patience, and allowing me to hop on my soapbox when I need to. 

xo, Cat  



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*For those Spanish speaking friends, a dear reader translated the original:  30 dias de autismo

Monday, April 2, 2018

Worth a Repeat



I know I've mentioned it before, but I do so love the FB On This Day feature.  It's a collection of posts, pictures, and links that I've shared previously.  Most of the time, I find myself laughing at what I'd shared - a funny ha ha kid story, or nodding in agreement as I recall an important article I wanted family to see.  Some memories aren't so wonderful to reread - like when Ronan's had seizures.  But I wasn't disappointed when I saw today's memories, which included that photo above.  

That photo captures so much.  Taken by Fiona, I added it to an article that Ronan's younger brother helped me write on this day last year.   On this day, this day that so many families like mine would gladly skip over, we politely remind the world how painfully aware we already are and have been for far too long...  


As yet another autism awareness and month-long celebration kicks off this month will be doing the same as last month for our family.  Surely our month will include hopeful, happy, and joyful moments, but we know that it may also include moments of frustration, grief, and sadness.  We will find things Ronan does and be excited that he made progress, but we can never and will never celebrate autism. 
We don’t celebrate seizures.
We don’t celebrate not being able to speak.
We don’t celebrate not being able to sleep.
We won’t and can’t celebrate autism and would never ask any of our family or friends to do so either. 
Instead, we’ll tend to Ronan’s needs like we usually do.  We’ll care for him each and every day.  We’ll make sure he’s safe, healthy, and most importantly, happy.  We will celebrate his gains and his progress as we always do.  That’s my goal.  That’s my family’s goal as well... 
If you know us, if you have helped us, if you believe in what we're doing, thank you.  I know I don't need to ask you to be more aware of what happened to my son.  You get it.  You respect it.  You make life better for us by accepting that we will not and could never celebrate a disorder, a diagnosis, or any of the struggles we constantly face.  Some of the world hasn't caught up on that yet, so thank you for your compassion and your support.  

For helping us, for joining us as we jump for joy when Ronan signs a new word, when he types out a full sentence, and when he flashes that gorgeous smile of his, we couldn't be more grateful for you.  To those friends and family who do not walk in circles, who will wear any other color but blue this month, and who will continue to cheer for us as we go against the grain, you mean the world to us...and not just today, but everyday. 

xo, Cat

Sunday, April 1, 2018

Reason #3011

I posted this photo and write up a year ago for friends and family.  I'm sharing it here today for anyone who might wonder why a family like mine doesn't care to celebrate an autism diagnosis.  No way could we ever celebrate it.  And it's not just for one reason.  We have quite a few...


#3011 
Reason #3011 why we do not celebrate autism.  Other reasons?
The seizures.
The behaviors.
The wandering
The loss of speech.
The loss of gained skills.
The cognitive challenges.
And, if I may be so bold, the loss of future potential.
Why would anyone ever ask us to celebrate any of that?  We can't.  And we won't.  We will, however, celebrate Ronan and the joy he brings to our lives.  And let me tell you, there is so much joy that that little guy brings to our family!  We love to share the joy he brings and will continue to share that.

But the diagnosis itself?

It is not a gift.  It's a life-long, challenging disability that keeps a grip on Ronan and our family.  Do you celebrate cancer?  Diabetes?  Alzheimer's?  Probably not.  So, don't fall for the autism blue washing and autism celebrating that's going to flood the airwaves this month.  

What can you do instead?

Help a child.  Help their family.  Learn the signs and symptoms of autism.  Learn how to prevent autism, too.  That's possible.  We learned too late for our son, but young moms and dads can work to prevent autism better than we ever did.  As challenging as life is for us now, more than anything, that thought keeps me so very hopeful.

xo Cat 

Thursday, March 22, 2018

Guarded




This was a first: I had to ask a security guard to watch a door for me today.  Ronan and I were about to head home from an appointment, but I needed to use the bathroom.  It would be an almost 2-hour trip for us.  With two cups of coffee in me, there was no way could I make it home without having to stop.  But I couldn’t find a family bathroom in the building we were in.  The only women’s bathroom I knew of had 4 stalls in it.  Usually, I just take Ronan in with me, but this time, I worried.  While short for his age, Ronan’s a teenager now.  He’s not a little boy anymore.  Bringing him into a women’s bathroom in a public place could get us more angry stares than feelings of compassion.  

Standing in the hallway needing to make a decision, I saw a young security guard and asked where I might find a family bathroom.  “Oh, you won’t find one in this building yet.”  I said, “That’s going to be a problem – he (pointing to Ronan) needs to come in with me.  I can’t leave him unattended.”  Without hesitating or judging or wasting any time, the guard said, “Ma’am, there’s a bathroom over here to the left.  Check if anyone is in there.  If it’s empty, go.  I’ll stand at the door make sure no one goes in until you both are out.”  

Speechless, I took Ronan’s hand and walked into the ladies’ room.  I didn’t have to, but I’ve never peed faster than I did today!  

Washing up, I said to Ronan, "Okay, buddy.  We can get on the road now.”  As I pushed the bathroom door open, the security guard was standing right outside in the hallway as he said he would.  I smiled and said, “Thank you.  Thank you so much for your help.”  He said I shouldn’t think anything of it.  But I did.  Our kids are growing up.  Many of us moms won’t be able to take our teenage sons into ladies’ bathrooms without being given the stink eye or being questioned.  

For my son, he doesn’t look typical – he wears noise-cancelling headphones, he's got blue-tinted glasses to block out bright lights, he's got a slow pace and an odd gait.  Right now, all of that’s on our side.  But I can see that for other young boys with special needs who grow up into strapping young men with special needs, it very much could be a problem.  It will be a problem for their moms when they can't find a family restroom.  

My problem was solved today thanks to a kind soul who thought quickly.  For those random strangers who understand and who help instead of hinder, thank you.  Your kindness is appreciated.  

xo, Cat