Saturday, September 24, 2016

Wandering Woes


I saw a post on the NAA FB page asking for parent testimonials.  They wanted to know how the Big Red Safety Box had helped families.  Since we were recipients several years ago, and since the contents in the box helped curb Ronan's wandering instantly, I offered to share our story.  

bigredsafetyboxlogoonly
 Big Red Safety Box 

--

Years ago, as my husband and I realized that our son, Ronan, had left the house, we immediately took off to find him.  My husband went running down the street while I went running up it.  After he slipped out of the house undetected, he managed to cross the street.  Ronan continued to walk and ended up in our neighbor’s backyard.  Beyond that backyard was a lake. 

My husband heard Ronan first.  Bolting through the neighbor’s yard, he ran as fast as he could.  Even though only a few minutes had passed since we discovered that Ronan had left the house, Ronan was in the lake. He did not know how to swim. Ronan desperately gripped the cold and slippery piling of the neighbor’s dock.  With teeth chattering and hair and clothing soaking wet, we were lucky to find Ronan when we did.

That day still haunts my memory.  It was late January.  Despite the sunshine, the temperature was below freezing.  Almost fully submerged by the time we got to him, his clothing was beginning to weigh him down. After getting Ronan out of the water, we breathed a sigh of relief. But only for a moment. Having read that children with autism are prone to wander – and to seek bodies of water like Ronan just had when they wander, I was terrified. I knew I needed help and quickly to make sure this didn’t become a habit for my son.  The people we needed at that moment were the members of the National Autism Association (NAA). 

Once I contacted the NAA and told them what had happened, they quickly set out to find resources in our community.  At the time, our community was not willing to work with us.  Instead of letting that be the final answer, the NAA went to bat for us again.  Their efforts, and the items in the Big Red Safety Box that they donated to us, gave us time.  It also gave us hope.

We immediately installed the door chimes and posted the visual aid (stop signs) on every door that lead outside. Those helped. Those, and knowing that we were not alone in trying to solve the potentially life-threatening situation that wandering brings, helped a great deal. 

Ronan is still prone to wander, but we have equipment in place to assist us at a moment’s notice. I know that if we ever need further support from the National Autism Association, they will assist us with not just with resources, but also with hope.

--

A few days after I wrote that testimonial, I was cleaning out a hutch that we have.  It has beautiful woodwork and hinged doors that, when opened, reveal several compartments.  It used to house some of our electronics, but I've been using it for storage for some time now.  In it is a box of my kids' artwork that I've saved, some medical EOBs that I need to sort through, and an extra copy of Ronan's medical records.  As I sorted through the medical records, I found the Be REDy booklet that we received from NAA when Ronan began to wander again.  

Every few years he seems to go through a wandering phase.  Every few years I reach out once more to the NAA for updated advice.  The last time I needed them, they sent me the Be REDy bookletRonan's had 2 wandering incidents in recent weeks, so the timing of finding that booklet could not have been more perfectly timed.  I kept it out so that I could read through it again.  

I sorted through more papers and another pile of mementos when I saw something else.  Stuffed behind the papers and the booklet was a small yellow fleece jacket.  It's the only article of clothing in the hutch.  It's also the only article of clothing that can instantly take my breath away.  That fleece jacket was the jacket Ronan was wearing the day we almost lost him in the lake that freezing cold day so many years ago.  

Why save it?  

Why hold onto it?  

Why not throw it out or at least give it away?  

Why keep something that instantly reminds me of one of the worst days of my life?  The only answer I have is, I don't know.  I don't know why I saved something like that.  It's not like it brings back happy memories.  Hardly!  I remember that day so clearly - the intense emotions, the terrible worry, and the awful, awful fear.  I remember the relief and the thanks-be-to-God moment that followed once we got Ronan safely home, but it truly was the worst day of my life.  

I have a piece going up tomorrow on Age of Autism about wandering.  (Follow this link to read that post) In the piece I share resources and the latest legislative efforts regarding autism and wandering.  It's an important piece, but I almost didn't write it.  

Wandering is never easy to write about.  It would be so much easier to right about something hopeful and happy that Ronan's done lately.  So when I sat down to start typing, I hesitated.  

But only for a second.  

Until parents like me never have to worry about their children leaving their homes undetected, through the tears, through the pain, and through the awful, awful reminders of just how fatal wandering can be, I will continue to write about it. 

xo, Cat

--

For more information on wandering, please look at the NAA and the ASC websites.  

Thursday, September 22, 2016

Ho Hum Home

I wasn't supposed to be home today.  I had made plans to be out allllllll day long.  You know what they say about those best-laid plans though...

--

I get little reminders every now and then that are just perfectly timed.  This towel, that I happened to grab to cover a tray of snacks I made for IzBiz, had a perfectly timed message:  

Home is where the heart is.  
I was supposed to be out to lunch today with my BFF and another very good friend.

I was supposed to be getting groceries today, too. 

I was also supposed to be volunteering in a classroom today. 

But nope, nope, and nope. 

I thought I really needed to be out of the house and busy and doing my own thing.  But my IzBiz is home with the sniffles.  She needs me.  And I need to be with her.  

The groceries can wait, and of course, everyone understands that I can't be of assistance today.  I hated to break my plans, but I had to. 

It doesn't matter how many plans I make.  It doesn't matter how any good intentions I have.  It doesn't matter how much I yearn to be outside of the house.  On days like today, days when one of my children needs me the most, home is where my child is...so home is where I am, too.

xo, Cat


Tuesday, September 20, 2016

Keeping Track

Ronan is learning about Geography this school year.  Last year, he became familiar with several of the states.  He can successfully identify 10 states and not just by their shape.  I can ask him, Where do Mama and Papa live?  Where does Aunt So and So live?  Show me where Uncle So and So lives.  Point to where you were born.  The more open-ended the questions are tell me he's able to learn more than just a basic fact.  He can make personal and meaningful associations to an abstract concept.  

Ronan's going to learn all 50 of the states this year.  He's also going to learn about the US borders, major water ways, and the continents.  This morning, he learned where Europe was.  
We did Geography lessons first today because I wanted to take a picture of the map.  I needed the photo after seeing something on my blog dashboard yesterday. 

The dashboard is a place where I can track a few things - how much traffic my blog gets, where my audience is, and how many hits each of my posts get.  It's also where Blogger can leave me a message.  Even though I've read the message Blogger left me some time ago, the alert is still there.  Unable to delete it or click it so it shows that it's been read, it's still sitting there all these months later.  After seeing the message again yesterday, I decided to add it to today's post.  




Thanks for visiting!
It's not the best image (sorry!), but it says that European Union laws requires me to give European Union visitors information about cookies used on the blog.  The law also says that I need to obtain consent (to collecting cookies) from my blog visitors.  

Blogger says that they added that information in a notice on the blog explaining this, but since I have not been able to log in from Europe (oh, how I wish I could pop over and visit!), I have not been able to view the message that is supposedly there.  

Here is hoping and praying that it is!  Now, back to studying Geography facts and then we break for snack time.  Maybe Ronan and I will have some cookies for snack today, the edible kind ;)

xo, Cat





Monday, September 19, 2016

Small Things

Good grief.  It's been months since I've written anything here!  I don't have much time today to share anything super exciting or profound, but I do have a little something to add to the blog.  

This photo.  
Always
The photo is of a magnet that my daughter got for her birthday.  It contains a simple message but one that has spoken volumes to me since the day I read it.  

Soon after Fiona's birthday, our schedule was gearing up to be incredibly full.  Exactly that happened.  We went from not much going on all summer to school, sports and everything else in between.  Not one day goes by that we don't have something on the schedule.  I haven't felt calm, cool and collected as I had most of the summer.  Instead, I've been rush, rush, rushed feeling harried and a tad overstressed.  I love being busy and seeing the kids actively engaged in activities, but we're almost too busy.  Something has to give, but what? 

When I first read the message on that magnet, I immediately thought of Mother Teresa (the quote is attributed to her).  Growing up, I remember Mother Teresa to be such a simple and peaceful woman.  On the most stressful days, I yearn for the peace that I imagine Mother Teresa, now canonized as Saint Teresa of Kolkata, exuded.  I yearn for a peace that I imagine her simple yet great deeds brought to those she served.  Could I find that peace?  Could I find that peace and share it with those closest to me?  Lately, with how much we have going on, I didn't think so.  

Some days, especially lately, I feel like I've served until I can serve no more.  Those days are so hard to handle.  They are so hard to push through.  They fall on the same day that we have a thousand things to do or to get to.  They creep in on the same day that I see that my son is struggling, too.  

Seizures.  

Tremors.  

Aggressive behavior.  

All of that has increased for Ronan.  With how quickly our schedule changed, it has not been easy to be him.  It has not been easy for me either.  

Our schedule has been so very crazy.  The kids have been so incredibly busy.  Life is quickly zooming by, and I have not had time to tackle anything big.  I feel horrible that I also haven't been able to give my time and talents to others as I'd hoped.  I don't want to fall completely down in the dumps, so when I do feel myself getting discouraged or overwhelmed, I stop.  I breathe.  I remember that peace is out there.  I remind myself of that and reread that magnet one more time:  

Do small things with great love.  

I can do that.  

I know they won't last, but on those dark and dismal days that seem to take forever to end, I've been seeking that photo and saying that quote.  I find myself scrolling through my photo album to stop at the image of that little magnet.  I focus on the message.  It's what fuels my thoughts.  It's what drives my actions.  It's what fills me with faith.  It's also what gives me hope to keep on going.  

I'm focusing on small things now.  It's what I can do.  It's what I can handle.  It's all that I can give to others.   Small things lead to big things.  When I can get back to doing those again, I will.  But for now, I promise to remember to do small things with great love.  

xo, Cat


Thursday, July 14, 2016

FYI - Exemptions

All too often parents hear the term "school shots" and assume that in order for their child to attend school, shots must be gotten.  While it is true that some shots are being mandated in several states, other students in other states still have access to exemptions.  But information about exemptions is often left out.  

Twice in the last week FB friends have shared vaccine information specific to their state - to include that parents have the right to opt out of those so-called "school shots".  I've written about them before, too, and wanted to share some of the information I've learned here today.  One of those articles is posted below.  

xo, Cat



--

Ronan started school this week.  He was severely affected by vaccines.  He’s non-verbal, completely dependent on others and has autism.  Because of other medical issues that stemmed from the vaccine injury, Ronan’s on a modified school day only able to attend school for a few hours a day and only a few days a week.  Before this school year started, I dropped off some paperwork to the school:  Ronan’s health care plan, his seizure plan and his vaccine exemption form.  Until I’m assured that vaccines truly are safe and effective, that vaccine exemption form will accompany him each year until he graduates. 
Back-to-school letters from school administration typically include a cheerful welcome.  An announcement or two about what to expect on the first day back, and a kind request to drop off school supplies including any remaining forms might be added in the letter, too. 
Ronan’s school recently sent out a back-to-school announcement.  Included was a memo about ‘back-to-school’ shots with a message that made it sound like he had to get them or he wouldn’t be allowed to attend school.  I appreciate the gentle reminder to wrap up our summer fun, but I do not care to be told incomplete and inaccurate information.  I especially don’t like it when that sort of information is demanded as the tone of the messages I received most certainly was a demand.

With the opportunity schools have with the large population they serve, instead of properly educating parents that vaccines are optional, I find that they’ve misinterpreted laws, altered wording and have been allowed to make absurd vaccine demands.  Making vaccine demands is both troubling and fascinating.  Troubling because some people would never think to question a school policy and fascinating because literature parents are given elsewhere about vaccines may state otherwise.
Why are dictator-like demands being handed down to parents?  For many, to say get-vaccines-or-your-child-can’t-come-to-school is untrue.  And honestly, it’s dangerous.  Fortunately, for those who cannot or do not want to get vaccines, due to contraindications to medical conditions or because of religious belief for example, opting out of vaccines is still possible in some states.  (Opting out is actually a terrible term to use because, for the majority in the US, vaccines on the CDC’s schedule are merely recommended.)
It’s a shame that parents feel the vaccine heat from schools.  Instead of focusing on administering first aid when it’s necessary, school nurses have been allowed to become school shot Nazis.  The very people who can educate parents don’t.  What do parents do?  Blindly trust?  Yes.  Let their guard down?  More often than not, yes.  They do both because they haven’t figured out or learned that need to keep their guard up.  I was that parent when I let fear and a school nurse persuade a decision I now know I didn’t have to make.  That decision is one I regret to this day. 
I recently witnessed a student being told she must get the shot or she will not be allowed into school.  Worse, the young girl was told her the shot would be good for her.  I wonder if the nurse based her opinion with information from a vaccine study from the CDC.  With the recent allegations coming from a CDC scientist who authored a study that includes apparent fraud, the school nurse is not only telling half-truths, she might very well be citing falsified information. 
If parents chose to vaccinate that’s a decision they should make on their own.  It should never be a made because someone bullied, persuaded or worse, demanded it of them.  Never.
I can only hope and pray that the student’s parents know to look up what is actually required and to then exercise their rights to know that they can say no, thank you when the school comes around looking for documentation. 
I know better how to advocate for my children because of past vaccine decisions I made.  I educated myself enough to know that even though a nurse said my children had to get shots to get into school, I discovered that no, my children could not be barred from school entry if they did not get the vaccines she said they needed.  Unfortunately, I learned that fact after I’d already begun to vaccinate my children though.  I wish I’d started learning sooner because what I also learned is that vaccines come with no warranty, no guarantee and should vaccine cause a reaction, no one would be sticking around after the fact to help me or my child.  That was a tough lesson to learn.
Not all back-to-school letters and supply lists need to include vaccines.  If your state offers exemptions, I wish that that information would be a part of any and every vaccine communication that comes from the schools.  I asked Ronan’s new school nurse to please consider adding exemption information to future vaccine messages.  It really don’t think it would be too hard to do.  It’s as simple as including a link or directing parents to search their state’s particular vaccine exemption information.  One line is all it takes: “…vaccine exemptions can be submitted...download this form or follow these directions...”  Easy, right?  Sadly, I find didn’t find that information included in the latest back-to-school paperwork I got from the school. 
Maybe they will include the information next year.
--

If you have questions about your state's current vaccine exemptions and how to use them, ask your school admin for more information.  If they don't know or if they cannot provide accurate information, show them what the law states (to search vaccine exemptions state-by-state, follow this link to the National Vaccine Information Center’s website which lists updated vaccine-related information).  If you want to take it a step further, which is what I've done personally in the past, ask the school staff why they are only citing a portion of the law and not the law in its entirety.  I'd be curious of what kind of responses you get.  


Friday, July 8, 2016

Stop, Drop, and Pray

I'm sitting in my little girls' bedroom watching my youngest clean up all her little girl things.  Once I realized that the room hadn't been cleaned in awhile, she had to stop everything and straighten things up.  Clothes, stuffed animals, dress up clothes, and all manner of toys - there was stuff pretty much in every nook and cranny in the bedroom that needed to be put away.

While cleaning up, my little one put this cross right in front of me.  She said nothing as she did so but must have known that I was struggling on the inside these last few days.  The news this week has been full of troubling events which have had me feeling frustrated, sad, and worried.  From hearings in D.C. to violence on the streets, after reading the news, I've walked away from quite angry.  As hard as I try to shield my children from some of the news and how it affects me, I know that kids can pick up on their parents' emotions.  I hated that my child picked up on those emotions but was comforted as she offered a bit of hope while I was stuck in a moment of despair. 

I couldn't remember what the verse from Psalm 37 was about, so I looked it up.  Verse 4 is good.  Verses 5 and 6 are better.  But verse 7 is more appropriate for today.  I think the entire Psalm is worth reading, so here's a link for it:  Psalm 37.

For those who are sad and frustrated and worried about recent events, and who are trying to understand what on earth is going on in our world today, I'd encourage you to take a moment and read through this Psalm, to reflect on it, and to never stop believing.  As easy as it can be to lose faith, we must never stop believing. 

xo, Cat

Wednesday, June 8, 2016

Or Else!

We got a reminder note from the kids' school a few weeks ago.  One of our children was "due" for a booster shot.  Documentation of that booster would be required prior to the start of the next school year.  We were not given the "...or else!" threat that's usually added to school shot notices, but the tone of the letter certainly implied it.  

I'd be lying if I said I didn't let the notice bother me much, but it did bother me.  A lot.  

After rereading the current law - to include the section about vaccine exemptions, I wrote an email to the school nurse.  Knowing what I know about school shots (that in many states they are in fact not a requirement for school entry), I knew just how to respond to the misinformation that the school had sent home with my child. 

Now, I could've gone all Encyclopedia Brown on her citing the law word-for-word.  Or I could've ripped her a new one for bullying my son into getting a vaccine he didn't need (the way the note was worded, he was so worried that he wouldn't be able to return to school in the fall without this booster). But in my email to the nurse, I was kind, cordial, and very respectful.  I did that not just because that's how people should be treated but because this woman, and the staff she works with, will be the first people my child must rely on in an emergency medical situation should there be one on campus.  We need a positive working relationship with the staff, not one full of animosity.

So in my email, I simply asked for clarification.  

Will the exemption that we have on file with the school still be valid for the 2016-17 school year?  If no, I shall provide an updated one promptly.  

Then, I prayed.  Oh, how I prayed.

I haven't had the best of luck with other school nurses, which was one reason why I wrote this piece a few years ago.  Thankfully, the nurse we've been working with recently has been more than helpful, more than knowledgeable, more than understanding, and more than accommodating.  She usually stays abreast of the law, to include recognizing that parents have choices. But she failed to add that in the recent letter that came home.  That's why in my email, besides an 'exercising of my parental rights' notice, it was also a gentle reminder to her:  Psst.  You forgot to mention one of the most important parts of the law - the exemptions!

I waited for her reply all the while praying that not mentioning exemptions was just an oversight. 

It was.  

In her reply the following day, the school nurse apologized for not including all of the information. She also assured me that the current document we had on file would suffice.  

Whew. 


Whew. 

Whew!


I thanked her, and since I had her attention I added, can you please consider revising the notice that was sent home to include that exemptions are also acceptable as I'm sure other families would appreciate being aware of that information.  She replied that future notices would contain that information.  

We've yet to get any other vaccine-related notices this school year, but I'll be looking for a line that states that parents may certainly submit an exemption in lieu of a booster shot.  I know that other parents are not so fortunate, and my heart breaks for them as I think about the stress they've encountered while trying to advocate for their rights and for their children.  

It is a sad, sad day when threatening another human (forced vaccines) is the norm and when withholding a child's education based on a medical procedure (no shots...or else!) is an acceptable practice.  Shame on those who think that that's okay.  

Because it's not.  

xo, Cat    

--

Curious which exemptions exist in your state?  Check out this link for information.