Sunday, October 30, 2016

Ask the Parents

While prepping a review of my friend's new book - which is full of incredibly useful information about autism, vaccines, and so much more, this old article and accompanying image (below) popped up in my FB memories.  I didn't think it was a coincidence.  A lot of what Julie shares in her book parallels our story.  It had me remembering the early days, the early worries, and the early choices I'd made that I now wish that I hadn't.  



Some of what I'd written in that old article about what I wished I did and didn't know still holds true, like this statement:

I know too much, so much but then on some days, not enough. 

That's why I still ask questions.  That's why I still read as much as I do.  That's why I still reach out to people I trust to lead me on the right path.  Who are those people?  They are other parents.  When I need answers for autism, seizure, and mito-related concerns I have, I don't always running to medical people first; I go straight to the parents.  

That habit goes back years and years.  It started when I needed help in the beginning.  Parents set me straight then.  Parents set me straight now.  They're the ones actively researching.  They're the ones sharing ideas, reading material, encouragement, and results - and they do so with no strings attached.  

Parents aren't clueless like some of our doctors have been.  Not only that, when another parent's child gets better, because some kids do recover from autism, these parents don't clock out.  They don't leave the community.  They stick around and continue to help.  I've said it before, and I'll say it again.  I'd be lost without the parents I've met in this community.  I wouldn't have learned what I needed to.  I wouldn't have known what I needed to know...

I know about vaccines, and autism, and special ed, and about all those acronyms.  I’ve read the history behind vaccines and that autism can be a result of vaccines.  I hear about the greed, the cover-ups and the on-going deception.  I know more now than I have ever known before.  I belong to a community because of that knowledge.   A community was formed because of some awful realizations and that greed that intruded in our children’s lives.  Formed for parents like me who also felt that stab of betrayal, this community stands out speaking up to offer help, hope and the truth.  

I jumped into this community too many years ago happy to have found it but also thinking I’d be long gone with a recovered child by now.  His needs and the damage done to his health are still so great, so I remain.  I hang onto every word shared—in the biomed community, on the special needs parenting boards, in the local support groups that we’ve made for each other.  Created for us, and by us, to survive what we wished we’d known but didn’t.  With that revelation our eyes are now opened.  So much has been revealed, and we will never be clueless again.  Seeking the truth we wished we never thought we’d ever have to find out, and making sure that what we discover is shared, this has become and likely will remain a way of life. 

Something else I've said before too that I know others will agree - I hate the reason that we found ourselves together.  I do.  I wish we never had to be here together like we are.  But since we're here, we might as well work together.  And, for the most part, we do.  I try to do anything and everything I can for the kids and for the parents I've been blessed to know. 

They are my teachers.  

They are my guides.  

They are my hope. 

xo, Cat


Friday, October 28, 2016

Add It Up

This image has shown up on my newsfeed a few times in the last few weeks.  Here were just a few thoughts I had after seeing the same image posted a year ago:

-It's such a simple graphic yet peppered with tons of important facts.

-My gosh.  What a stark difference in what was then to what is now. 

-Vaccines for pregnant women?  Dear God.  No. 

-70 doses?  Madness.  Sheer madness. 

-These numbers do not lie.  In fact, they should terrify. 

-Parents, do the work.
After seeing this image a year later, sadly, each of those thoughts holds true. 
Photo credit: Immunity Education Group 
The sheer madness continues today.  Will it ever end?  Not with vaccine mandates being enacted, like what happened in California, and not with the threat of personal health care choice being taken away in other states.  For those who wish to keep their personal freedoms alive, I do encourage you to please, do the work.    

xo, Cat 

--

Want to know more about vaccines and also about your rights but don't know where to start?  Check out these two links for information:

NVIC  



Wednesday, October 26, 2016

My Kid, the Looseleaf Artist

I've been hounding Ronan's brother to please use one of his many sketchbooks for his drawings.  But the kid is an in-the-moment-now sort of artist.  When he needs to draw, he draws.  I've found Willem's sketches all over the place - on scrap paper, on homework pages, on the back of tests.  Sometimes, but rarely, will I see a new sketch in his sketchbook.  Lately, I'm finding more of his artwork on looseleaf paper.  Like this sketch:

It's so cool!  

Willem draws when he can, whenever he can and wherever he can like on random pages of looseleaf I keep finding.  I need to find all the ones he's already done.  Then, I'll upload more images to showcase more from my kid, the looseleaf artist. 

xo, Cat


Tuesday, October 25, 2016

Reset

8:36 am seems to be when I can catch the light just right in the kitchen.  It's magnificent as it streams through the trees.  It's brilliant, truly brilliant, as it pours through the window.  Around 8:35 am, I scootched these 7 rocks (one of the each of us) from where they usually sit to capture this photo.  At the last second, before the sunlight hid behind some of the taller trees in the backyard, I placed the cross in the front of the stones.  

Click...and perfection.  
Be on your guard, stand firm in the faith, be courageous, be strong.
1 Cor 16: 13
Yesterday was anything but perfect.  After that painful reminder of what I saw in the police station, I was on the verge of tears through the early evening.  I didn't have time to be on the verge of tears as I drove down the highway to a volleyball game though.  I couldn't burst into tears like I wanted to while sitting in the stands cheering my daughter on.  I had to keep my emotions in check while chatting with other parents in between sets, too.  By the time we got back home hours later, I didn't have time to dwell on the day's events or straighten out my mixed emotions.  The day was quickly ending, and I had get ready for the next one.  

Today is a yet another busy day.  I've been in go mode since the moment I woke up and will likely stay busy until I crawl under the covers late tonight.  But today, like every new day, I get a fresh start.  I get to hit the reset button.  I get to try, try, try again. 

Of course, some things are still the same - our busy lives are still busy.  Our busy schedule is still very busy.  Our family's needs and Ronan's special needs are still very much exactly the same.  But one thing is different - it's a new day, and I can choose to live it with a new beginning and with a new attitude.  The minute I woke up today, I got to set the course for the day.  So I did just that.  

With faith first.  

With prayer first.  

With gratitude first.   

And with hope always.  

xo, Cat


Monday, October 24, 2016

Hit Hard

So, there I was minding my own business at our little police station (I had to drop off some stuff) when I find myself in the back of the station.  While waiting for the young police officer so I could give him some paperwork, I glance over and see this paper that I made for them a few years ago.  Hanging on their bulletin board, it's there because Ronan is considered a "person of interest".
My first response when I saw the paper and Ronan's picture was, "Hey! That's my kid!" and I'm all sorts of smiling.
In returns the young officer and I say, "Hey! That's my kid!" all sorts of proud.  Then, it hits me.
That's my kid.
And he's on the police bulletin board.
Because he's a person of interest.
He's no criminal, but they need to know who Ronan is.  They need to know what he can and what he can't do if ever there is any kind of emergency - medical or otherwise.
The officer said, "Yeah, I know him.  I remember my first encounter with your son... He needed help, and I was there to get him home."  I remember that day a how frustrating it was.  It was a bad, bad day.  But he was there, this young guy, and he was ready, willing and able to help because he who Ronan was and because he knew that Ronan needed help.
After taking care of the paperwork and thanking the guy for his help - not just today's assistance but for being on-call for those few 9-1-1 moments we've actually had, I get hit hard with the emotions.  I mean hard.  Can I just tell you how hard it was not to cry while making my way from the back the police station to the car?  It was SO hard.
Keeping myself from losing it in the parking lot, I start the car and turn on the radio.  As I'm about to pull away, this song came on.  And I lost it.
It's randomly played before after other really tough moments and usually brings on the waterworks.  Well, cue the tears.  Down they streamed over my cheeks.
Raising a child with special needs is so hard.  SO hard.  I try harder to find something positive or hopeful.  But when I can't see positive or remain even the tiniest bit hopeful, I can't help but cry.  Like I did today.  
I hope that tomorrow is a better day.  I really do.  

xo, Cat

Sunday, October 16, 2016

Soulful Sunday

These kids. They really know how to put a smile on my face.

Ronan did well at Mass last night, although he was on my back for most of it (piggy back - including when I received...and when he said nice and loudly YUM *as* I received).  It was touch and go for a few minutes before, but he made it through to the end which means we all made it to the end.  Taking Ronan to church can be tense.  But we smile, breathe a big sigh of relief, and remember to thank God for amazing church moments, like last tonight's, when they happen.
Other things made me smile last night, too.  The little girls brought a bag to Mass.  It had their church books in it.  And a barrel of monkeys.  I wish you could hear the happy giggles I giggled when I saw the monkeys at the bottom of the bag when we got home.  Why the monkeys?  For good measure?  To represent the monkey on my back?  Or because life is a barrel of laughs?  
Who knows, but oh, how they made me laugh.
Hee hee hee and ha ha ha.  I love these silly, little pickles so much.
xo, Cat


Saturday, October 15, 2016

Will It Minecraft?

So, the kids think I'm nuts to share this.  For weeks they've said it's a bad idea.  Come on, kids, I have great ideas!  Really, I do!

Willem: Mom, no.  Please.  Don't.

Me:  Why not?

Willem:  Because.  It's...weird.  And you don't know anything about it.


Me:  True, I don't.  But it'll be fun.  Trust me!  

Willem:  Mommmmmmmm.

--

So, what's my great idea?  Let me tell you all about it.  It's called Will It Minecraft?  It's simple really. And actually, Willem started it.  

Will It Minecraft?
Let's find out!

Willem is my creative kiddo.  He loves to build.  He loves to play.  He loves to draw and be goofy.  He's got a heart of gold, too.  Before Minecraft got really popular, he and his Dad (pictured above) made a Minecraft "mask" for Halloween.  They made it well before costumes were available at the stores, so when it was time to trick or treat, all the neighborhood kids who saw the Minecraft creation were very impressed.  I was, too (even though, at the time, I didn't know much about the game except that it was super fun for my kids).  

I still don't know too much about the game (except that it remains super fun for the kids and that Willem's brother, Ronan - who is severely affected by autism, plays with the siblings on occasion).  It's a fun past time, and the siblings enjoy working to create worlds together.  I can tell that their love for the game is still strong, especially for Willem when I see him going "off-screen" with his Minecrafting abilities. Take this hunk of cheese, for example.  

As I scrolled through photos on my phone one day, I saw this:

How creative!  Here's another one.  


And another, this time with a cantaloupe.  


Will It Minecraft?  Yes, it will!  

Willem's tried other foods - a hard boiled egg, a tomato, and an apple - but those didn't work out so well.  I don't doubt that he'll let those disasters stop him.  He continues to create LEGO Minecraft scenes, draws them in his sketch book, and continues to come up with the neatest buildings while playing on-screen.  Being able to slice and dice fruits and veggies is just another creative, albeit messy, addition to one of his favorite games.

So, am I nuts to share a fun, little activity that I call Will It Minecraft?  Maybe.  Or maybe it'll be a new craze that all the kids will be trying next.  If you find yourself carving out a Minecraft creation in your food (get permission from your parents first!), snap a picture and share the fun.  I'll show the picture to Willem so he can see that his Mom is not nuts after all.  

xo, Cat




Friday, October 14, 2016

An Apple From Teacher

It took years to happen, but I finally got a chance to volunteer.  I got that chance two weeks ago.  It was only one day, but what a glorious day it was!  I helped in the lunchroom.  I helped at recess.  I helped during an Art class, too.  I haven't been back in the classroom in years, so being able to tip toe back into a school setting was fantastic.  I was tired by the time those two hours were over, but it was a good tired.  

For a long time now I've been wanting to find time to volunteer at my kids' schools.  Always thinking I'd be able to at least pop in at lunch to sit with one of my children, that hasn't worked out well at all.  Ronan's therapy schedule keeps me and him on our toes.  Plus, he's the least bit interested in going.  With the volume level on high from the moment we walk into the lunchroom to the moment we leave, Ronan would rather stay home where it's lots quieter.  

All that noise, all that commotion, all that sitting he'd have to do is uninviting.  The students are welcoming when they see Ronan come to school, which I'm always so grateful for, but the busyness of that lunch and recess hour, the loudness of the typical students' comings and goings - and the lack of interest Ronan has clearly displayed in the past - have kept me away from many volunteering opportunities.  Sure, I could give my time elsewhere, but I'd like to start closer to home and where some of my family is.  

Ronan needs me quite a bit, but so do my other children.  So when I was able to schedule our therapists to come during the middle of the day, and because I do not need to be present for their sessions, I made plans to be out of the house and out in the community.  

The minute I found out that I had more time for myself, I asked the school staff if I could please come help.  I could finally see his siblings in their setting.  This time, it was I who felt welcomed.  

I've been back a few times since receiving that note.  Some of the time I am scheduled to be on campus.  But other times, like today when I discovered that I had 30 free minutes to myself, I brought my lunch and sat with one of my kids.  

As odd as it sometimes feels, going from not being able to to being in the building as much as I have been able to lately, I try not to be the Mom who embarrassing her kids especially when they're surrounded by their peers (and especially when they ask me to dab!).  Thankfully, my kids, as well as other students, are getting used to seeing me at school.  

Hi, Mrs. Jameson!  You're back!  to which I happily reply, "Hey, kids!  I'm glad to be here."

Hey, you're Izzy's mom!  to which I proudly respond, "Yes, I am."

Can Ronan come with you next time?  to which I lovingly reply, "Oh, thanks for asking about him.  You kids are always so kind."

It's been refreshing and rewarding to go, to offer my time, and to be useful to others.  I'm happy to finally volunteer a few hours a week at school, and I think Ronan's siblings are happy that I can finally be there with them, too.  

xo, Cat 



Wednesday, October 12, 2016

Shine Your Light


If I hadn't been running late, I wouldn't have captured this photo below.  The sun.  The brightness. The way it fit so perfectly in the angel's lantern.  It was mesmerizing, and it was perfect.  



It wasn't the easiest photo to take.  It was the tenth one I attempted.  But time (which I didn't have) and patience (which I'm constantly working on) paid off.  I've cropped out the drainboard (and the dishes) that sits below the shelf where those figurines stand.  I'll get to putting those dishes away later.  For now, I'm reflecting on that glorious sunrise and how I will shine my light for others today.  


...your light must shine before others, 
that they may see your good deeds 
and glorify your heavenly Father...
                                                                                            Mt. 5:16 

xo, Cat

Tuesday, October 11, 2016

Daily Devotion

I used to get to daily Mass quite a bit a few years ago.  I wouldn't get there every morning, but a few days a week I'd quietly slip into church, say my prayers, and slip back out into the world feeling spiritually refreshed.  I haven't felt spiritually refreshed in awhile.  

I crave church.  

I crave the reverence.  

I crave the spiritual hug I feel as I enter the sanctuary.  

Maybe that's because that's where things are quieter (than my home and my children).  Maybe that because that's where things are more peaceful (than my home and some of my thoughts).  Maybe that's because that's where I finally stop and sit and reflect and feel like I can breathe again.  

Some people start their day praying or meditating in the comfort of their home.  I find myself rattling off a few prayers as I wake and continue them as I race out the door.  I know that's not the best way to pray.  My prayers are rushed.  They're squeezed in.  They're on repeat and not as holy and wholesome as I'd like them to be.  

I had the chance to get to daily Mass last week thanks to my parents.  With all how incredibly busy and stressful some of my days can be, it was exhilarating to be able to go to church with them on a Tuesday in the middle of the day.  And now that I know the Mass schedule, I can go every Tuesday.  I can go on Monday and Wednesday and Thursday and Friday, too!  I don't know if I will be able to go each day, but I am hoping and praying that I can get to daily Mass at least twice a week.  

Sitting quietly, reflecting on the daily readings, offering prayers for friends and relatives - I can do all of that from home (or in my car as I often do as I race out for the day).  But I don't like to do that.  I never have liked that, and now that Mass is an option, I won't have to rush through any reflections, readings, or prayers like I have been.  I know I won't get there each week day, but I can slow down a tad and remember to use a daily devotional prayer book to guide me through the day when I am unable to go.  

I don't know every prayer there is to know and say, so using a guide is a good idea.  I was reminded of prayer that I hadn't heard in a really long time when I was with my parents last week.  As daily Mass ended, we said the Angelus.  I've only known it to be said at noon, but traditionally, I read that it has also been said at 6am and 6pm.  It's a beautiful prayer and one that I know that I can add to my day. It's a reminder...

To be faithful as Mary was

To be humble as Mary was

And to say yes to God as Mary did

Being faithful (when life is overwhelming), being humble (when life is unkind), and saying yes (when it's easier to say no) - none of that is easy for me, but with God's help, and through Mary's intercession, I know that anything is possible. 

The Angelus 

xo, Cat

Monday, October 10, 2016

On This Day

I love the On This Day feature on Facebook.  Memories of funny stories and long-forgotten conversations come flooding back when I click on it.  Most of the time, I'm reminded of something neat or exciting like one of the kids' milestones or a fun family adventure.  Today's memory was not so fun.  Frustration and sadness are better descriptors of what happened 4 years ago today...

--

Unbelievable.  Truly.  I lock the office door when I'm done in here because Ronan isn't so gentle with the computer (and has locked us out of it before).  I come in to find about 10 youtube screens open.  Most are Veggie Tales (yay, for typing that in correctly, Buddy!), but then this one song open too. 

Crazy.  

Check out these lyrics:

I think I used to have a voice
Now I never make a sound

I'm still inside here
A little bit comes bleeding through


--

That day and how Ronan bellowed really rattled me.  I shared more the day's events in a post later that week.  Writing about the experience helped me process the sadness, the frustration, and both the physical and emotional pain that accompanied Ronan's struggles: 

Ronan was slumped in a heap sobbing while signing “head”, “head”, “hurt”, “hurt”.  That sob evoked such sadness, sadness from him and sadness in me.  I inched closer and stroked his head.  I cradled his face and repeated, “I’m so sorry. I am so, so sorry.”  It was then that the lyrics from that song, that lone Nine Inch Nails song played in my head.  Watching Ronan struggle, thanking him for being able to tell me his head hurt, standing ready to do whatever it was he needed me to do while wishing I could make the pain disappear, it was all I could do to not fall in a heap next to him and cry it out with him. 
Ronan relaxed just enough for me to lift him up into my arms to carry him to his bedroom.  Getting his pajamas on wasn’t easy because Ronan returned to fight mode.  He grabbed my hair, twisted it and cried out again.  The searing pain that went straight to my scalp didn’t slow my actions—in less that ten seconds I had put his diaper on, zipped his jammies and gotten Ronan snuggled under the covers with his favorite blankie.  He released his grip, tapped his head and then let out another huge sob. 
Those lyrics again.  Repeating in my head.   Right there in front of me.  This time it’s me who’s saying them:
I wish this could have been any other way.
With tears streaming down his cheeks, and mine about to flood his bedroom, Ronan lifted his head.  He gently took his hand, put it to his lips and then extended it to my lips. Without the ability to speak Ronan depends on his signs to tell us what he wants to say.  This gesture, that sweet, little hand crossing from his lips to mine is how Ronan says “I love you”.  Oh, how I love you too, Buddy.  I love you. I love you. I love you.  Once more he kissed his hand to my lips.  Once more I promised I would do whatever I have to do for him.  Once more until there’s no more pain, or worry, or need to, I will always fight for him. 
--
The following day, Ronan had a seizure.  The awful outbursts, the painful cries, the sadness and that frustration that followed him wherever he went, it all made sense.  I was relieved that there was a reason for the aggression, but I will never be at peace knowing that seizures grip my child, his health, and his potential.  
Big sister captures a moment of Ronan's life with autism. 
Four years later, things are a tad better.  Ronan still struggles with communication and he still has seizures, but one thing has remained constant - my will to fight for my child remains strong.  So, even though my day started out with me remembering a sad moment, today, once more and always, I promise to do whatever I have to for my child.  

Once more until there's...

no more pain

no more worry

and no more need to... 

I will always fight for my child.

xo, Cat

--

Excellent article (found on page 24) worth reading about seizures and autism




Thursday, October 6, 2016

Cross That Bridge

Ronan was terrified on this climbing bridge.  Terrified!  He actually started shaking.  I was standing right there close to him, but he couldn't reach for me.  He was gripping the bar so tightly. 

Ronan attempted to say something (which honestly sounded like he was saying shit...shit!) and called out for me (which comes out Em - Em).  

Ronan could see me.  

He could reach for me.  

But he was paralyzed with fear. 

It took a minute or two for him to finally be able to carefully baby stepped toward me.  When he reached me, his whole body was shaking.  Ronan collapsed into me and wouldn't let me go, so we sat down at the edge of the bridge until he stopped shaking. 

When he went to another area to play, I thought the kid was done on that climbing bridge.  He wasn't.  Ronan came back to it looking at it as if he was ready to try crossing it again.  
You know what he did?  He crossed that bridge.  

Twice!  

Both times gripping his sweet little sister's hand so very, very tightly.  Her hand hurt a little bit, but she, too, braved the storm.  She told me she didn't mind.  

When brother reached for sister's hand, she was right there to hold it.  Then, she stayed happily and faithfully right by his side.  She did it for Ronan and with Ronan.  

These kids.  They inspire me, and I'm so glad they inspire others.  I love my little people and how very amazing they are.  

xo, Cat