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



Sunday, December 10, 2017

Blessed by His Love

One week, Ronan can sit through Mass.  The next week, he cannot.  Lately, there's been no consistency in his ability to be successful at Mass.  Instead of pushing him to do something he's unable yet to do, we went back to splitting up the family.  My husband goes to the early Mass while I go to the later.  It's not what we want to do, but it ensures that the rest of us can fulfill the Sunday obligation.  Occasionally, when my husband is traveling for work over a weekend like he was this weekend, I have to get creative in getting us to Church.  

I usually shuttle the older kids to the Vigil Mass so I can go to one of the Sunday Masses.  While I'm gone, the big kids watch Ronan.  It's only an hour and a half I'm away, but this weekend, I didn't want to do the splitting up.  So we didn't.  We took a chance of me taking all five of the kids, including Ronan.  I'm very happy that we did!  

Ronan recognized the church, which is not our home parish, and easily transitioned into the building.  I wouldn't normally do this, but I purposely left his backpack and snacks in the car.  I also left the iPad there, something he knew we'd brought with us when we left the house.  Upon entering the church, we found a quiet section and got settled in.  Within five minutes, Ronan was ready to leave.  I told him we'd do a countdown and prayed that he'd last longer than the 100 seconds I was slowly counting backwards. 

100...99...98...97...96...

He signed all done and proceeded to put the kneeler in the up position.  

...95...94...93...92...

Not wanting a struggle, which has happened plenty of times at Church before, I held his hand and guided him out of the pew.  All done, all done, all done, he signed.  "I know, buddy.  Let's go back to the car.  The kids will stay here," I told him.  Ronan hesitated.  The kids?  He looked back at his siblings and froze.  A confused look came over him as he pointed to them.  

I repeated, "Yes, the kids are staying."  

Ronan didn't like that answer so he sat in the pew we were trying to go around.  Pointing a very straight index finger at his big sister, he indicated that he wanted her to come with us.  "Oh, she's staying," I reiterated.  Ronan started to tap his hand on his leg, something he does when we do a countdown.  He "taps down" letting me know he knows an end is in sight and to keep himself calm.  

I continued.  

...91...90...

Pointing again, this time at the other siblings, I reminded Ronan that they were staying for the entire Mass.  He was not pleased.  But he did not get frustrated when I offered that information.  He quietly waited.  Pointing to the siblings hoping they'd come with him, he began to tap his leg once more. 

...89...

Then, he picked up the Bible.  Then, he started thumbing through the Bible.  Then, he started to read the Bible! 

At this point, Fiona had walked over to where we were sitting and encouraged Ronan.  He was sitting quietly.  He was reading.  He was staying in the Church.  That meant we could stay, too.  She beamed.  I beamed!  I smiled even more when the other siblings, about 4 pews ahead of us, looked back and saw us.  Signing to them, Fiona let them know that Ronan was reading the Bible.  Wide-eyed and full of grins, they were as excited as we were.  

Ronan stayed content going from one book of the Bible after another.  He stayed in the New Testament section and gravitated toward St. Paul's letters.  For ten minutes, he scanned pages, read, pointed to words, and read some more.  Engrossed in what he was reading, Fiona and I noticed that he kept going back to two verses - one in Revelations about Jesus' second coming and this one from Hebrews: 

"Never will I leave you:
never will I forsake you."
So we say with confidence,
"The Lord is my helper, 
I will not be afraid.
                   What can man do to me?"   (Heb 13: 5-6)

How profound!  He was not going to leave those siblings behind.  

Back and forth, Ronan flipped through the books of Bible during the rest of the Mass.  He wanted to leave during Communion but did a great job waiting for all of us to have the chance to receive.  With five minutes left, Fiona flashed me another smile.  She was so proud of her brother.  He did great, and he was able to lean on her to help make it through something he usually is unable to tolerate.  

After today's wonderful hour in front of the Lord, I found myself repeating the verse that Ronan had read:  "The Lord is my helper, I will not be afraid..."  Thank you, Lord, for that little reminder, because I do fear things - like the seizures, like the other medical problems, like being able to afford everything a special needs child needs.  But a message I needed to remember was clear - He will help.  And I know that God does help me.  Every single day, I am blessed by His love.  Not only was that message clear, it was so perfectly timed.  Delivered by an always-inspiring Ronan, what a treat it was for us to be at Mass with him today!  

xo, Cat



Wednesday, December 6, 2017

Up, Up, Down, Down



I'm calling this photo collage Up, Up, Down, Down. The pictures were taken during an unplanned park day that Ronan and I had yesterday.
We were there for about 30 minutes. Originally going because Ronan signed yes, he wanted to swing, he had more fun on the slide instead. Never a fan of going down slides, he attempted to go up this one several times. He never made it to the top. He gets too scared! The higher he goes, the more scared he gets. He doesn't usually ever reach the top, but he enjoys every single attempt he makes while trying to get there.
Ronan made it half-way up the slide several times yesterday. But every time he got mid-way there, he would stop and slide down. Back at the bottom, with feet firmly planted on the ground, Ronan would smile and try to go back up the slide again.
Half-way up.
Slide back down.
Half-way up.
Slide back down.
Doing that made him so happy. It made me happy, too.
Life can be like a slide. Up, up. Down, down. Some days can be really good - like yesterday afternoon's park day for us. Others can be tough and full of struggles. Whichever direction life is taking you today, hold on tightly. Pray fervently. Believe in yourself. And, if you need to, remember to try, try again.
xo, Cat


Saturday, December 2, 2017

Something Stinks

Life has been a little bit busy here.  It's always busy though.  Someday I may catch up.  But today, I present the latest funny ha ha that happened because...life and being busy and ignoring what I said I should do.

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The other day I made a huge mistake.  I copied a link to a video and sent it via messenger to my sister.  I had debated sending it to her by email and told myself, "Self, send this to her email," but I didn't listen to myself.  I opted to use instant messenger instead since that window was already open.  As soon as the link was sent, I realized OH, NO!  

I didn't send that video to my sister.  I sent it to two autism advocates instead!  

I adore these women but the video had nothing to do with autism.  It had nothing to do with vaccines nor anything at all to do with our kids' needs.  The video was not important nor relevant to any conversation we have had or probably ever will have.  Some people may think the video a tad inappropriate, too (swear words), and I had just blasted it to two very busy women who work hard for kids like mine.  

Sheesh!

Thankfully, I figured out a way to delete the message.  As quickly as I did that, I sent an accompany apology.  I'm SO sorry.  So, so sorry!  

One of the sweet mamas immediately wrote me back.  "No worries."  

Whew.  No harm, no foul.  

So why this post?  Because I stink.  Well, I don't, but something was starting to stink.  And if I'd bothered to listen to myself...

We were not as busy as we usually are on Thursday evening.  As things were quieting down, I thought to myself, wow.  I might just have time to clean the car.  It had only been 2 weeks since I'd vacuumed it, but I had a nagging feeling that I needed to clean it again.  I got distracted, though, and said that I'd get to it tomorrow.  

Friday was one of the easiest days I've had in a very long time.  All of Ronan's therapy was cancelled which afforded us hours and hours of nothing to run out to.  We're always running out - to his therapy, to a siblings' appointment, to drop off the sibs, to pick up the sibs.  We are go, go, go 8 days a week!  Friday would be the first time I'd have a 5-hour stretch at home.  Five glorious hours.  It sounded heavenly.  

What to do?  What to do?

I made a huge list, turned on some music, and started tackling projects.  I got lots done rather quickly.  With an hour before having to get into the carpool line, I said to myself, "Self, go clean the car, especially the back.  Surely there is stuff in the back of the car for you to put away."  

There was that feeling again.  I hadn't put 'Clean the car' on my To Do list, but I probably should have.

Psst, this is where you ask yourself, "Did Cat go clean the car?" 

And discover that the answer is...

No.  No, she did not.  

What was in the back of the car, you wonder?  What was still there from Thursday morning's shopping trip?  What was it that never made it into the house?  What sat under a blanket in the back of the car for the last few days?  

Four dozen organic 
brown eggs.  Let me clarify.  

It was FOUR DOZEN BEGINNING-TO-ROT EGGS.  

You may laugh at me and with me now.  



Since I am a waste not, want not kinda person, for the tiniest split second I thought maybe the eggs were salvageable.  But then I remembered that our temps rose slightly Thursday afternoon.  They rose again Friday afternoon.  It was now Saturday afternoon.  I was not going to take the chance that they were still fresh.  So, into the dumpster they went.  

We were supposed to have eggs and waffles tomorrow morning at breakfast.  I think we may be having cereal and toast instead.  

xo, Cat