kirstencan

For the record

Last night my daughter had a homework assignment to find a certain type of fallacy online (authoritative).  She was having a hard time, and I was helping her look up certain topics and wade through oodles of comments.

I tried looking up measles/vaccinations/autism articles, thinking I could find someone referring to the falsified 1998 study linking autism with vaccines.  Oh, I did.

I found an article.  Passed the link on to my daughter, and then skimmed the comments.  I was appalled that the article was from last month!  

The other that I found was published yesterday.   YESTERDAY!

People were still referring to that study!  The one that has been used by people/the media to say that vaccines cause autism and was completely and thoroughly shot down.  It was NOT a scientific study (The 'doctor' lost his medical license because of it).

I'm not going to bother linking to all the studies disproving that falsified study, or anything, they're really easy to find.

It frustrates me to know that there are still some people out there referring to such bogus info and spreading such fear about vaccines.  I know there is ignorance out there but this one topic just makes me crazy.  

So, for the record:

I absolutely and totally support vaccinating children.

My children are up to date on their vaccinations.

I do NOT believe that vaccinations 'caused' my son to develop autism spectrum disorder.  

You can especially tell because we vaccinated his younger brother.

If you do not vaccinate your children you are putting them in danger.

If you do not vaccinate your children you are putting MY CHILDREN in danger.

 

Please please please do not give in to fear-mongering about vaccinations.  If younger generations could remember diseases like our parents do I believe there would not be so much confusing information about them.  They remember polio.  They know how those vaccinations save lives.

Fear-mongering about vaccinations is also fear-mongering about autism.  Which isn't cool.  Autistic people have always been here.  

And my redhead is awesome.  Not something to be feared.

Do your research.  But make sure you are getting the real scientific info, NOT fear-induced propaganda/conspiracy theories. 

 

 

(I guess I will go ahead and link to this blog article, by an autism advocate mom, which does link to a bunch of the source material, since I am lazy).

Turning Twelve

In our church, turning twelve is a big deal.  Bigger than 13, turning 12 means you are can go to youth activities and the temple, and for boys it means being ordained in the Aaronic priesthood. It's quite a big change, you stop going to primary with the little kids, and go to classes for young women or young men.

As with his baptism, we did a lot of thinking and praying, and wondering how much our Redhead understood.  He wanted to be a deacon.

He didn't seem super interested in passing the sacrament, which is a main duty of a deacon.  The sacrament is the main purpose of our church meetings and is offered to the whole congregation.  Of course if he didn't want to, we wouldn't make him or anything.  As his friends turned 12 we would point them out to him, "Look!  Christian is a Deacon!  Look, Tim is passing the sacrament!"  but he didn't seem to care.

The week before he turned 12, his new class asked his dad and I to come in and talk to the boys about our son.  It's a very small group, and half moved in this year so they don't know him as well.  We are really glad we did this.  We talked about his sensory stuff, and how he handles church (it's hard).  We talked about what he's good at and what he struggles with.  We talked about his dad going on campouts with him and what they could do to help him.  We talked about maybe having another deacon being his buddy while he passes the sacrament, at least at first.

We had concerns about the whole passing the sacrament thing.  Most people know he is autistic, but few know the extent of his challenges, including some physical/motor/muscle issues.  We were worried he wouldn't be able to handle carrying the trays the whole time, that he would spill them or drop them, or just say 'I'm done' and ditch it to go sit down.  We were worried he would be silly, or get upset if a kid didn't return his little water cup to the tray.  We were worried because church is hard for him, and our ward has the 'backwards schedule' where Sacrament meeting is at the end of the three hour block.  So he's usually done by then.  He is nothing if unpredictable.

At his ordination, a leader asked my husband to be his 'buddy', at least for a few weeks.  We said okay, and asked him 'Want to go with Dad next week to pass the sacrament?' and he said 'No.  I want to go with my friends.'

He and his dad went to the first young men's activity together last week where the Redhead insisted his dad leave.  He didn't want him around.  His dad has been his scout leader AND primary teacher for the past two years, so this was a surprise to us!  But Aaron gave him his space and we chuckled about it.

Then, this morning, he had one of those mornings.  Yikes.  We weren't sure even suggesting passing the sacrament was a good thing.  He was just on one.  It may have been how he reacted to being nervous, actually.   But he was calm in his first class and he and his dad skipped the second class to go into the chapel and walk through his route and practice passing the sacrament.  The redhead told him he didn't want Aaron to go with him, that he would be embarassed.

That was the first time he's ever said anything like that!  It was a shock, and kinda threw the plan out the window.

We respected his wishes, but Aaron sat with the Deacons at the beginning of the meeting just to get him started.  He got the Redhead going in the right direction with his tray of bread, and then came and sat with us.  It went great.  He was quiet and patient.  He got distracted and sometimes forgot to pick up the tray right away or continue to the next row, but it all worked out.

It was awesome.  I felt so much love in that room.

We moved to this neighborhood when he was only 7 weeks old.  Not knowing what challenges and strengths this little babe had.

I saw the Bishop watching him during the opening song.  I could tell he noticed how much the Redhead loved sitting with those cool Deacons (he was pretty excited), and sharing a hymnbook with one.  

I saw the first lady he brought the bread to help him continue down the first row, and kindly remind him to move to the one behind her.

The next row had long time friends who I know love our family. 

We sat in the third row.

I heard people whisper his name if he forgot to continue.  

I saw a few of his old primary teachers and scout leaders on our side of the church watching him with proud smiles and I knew they KNEW.

He did awesome. 

He did the rest all by himself.  He was almost running with the water tray at first, but there was no spill.  He really really liked being a deacon.

He had so many people tell him afterward how well he did, and so many people telling us what a cool thing that was for them to see.

It was something.  And we had a lot of people rooting for our family today.

 

 

If you were one of them, thank you, we love you, too.

 

A letter to the universe

Stop saying the R-word (retard/retarded).

Please teach your kids it's NOT okay to use that word, especially directed at someone.  ESPECIALLY directed at a kid with special needs.  There's no good way to use that word.

I thought people were better than that.

 

 

 

 

Special needs parent = broken heart nearly every day.

It gets exhausting.

Water beads

Last week at occupational therapy, the redhead got to try waterbeads.  They're a pretty popular idea for sensory bins and stuff, but we'd never tried them before.  He was slightly resistant at first, then seemed to really like them, so I ordered some to try at home.

They come as really tiny hard beads.  You soak them in water to plump them up.  Below I have some who have  been in for an hour or so, and I poured new ones in, so you can see how tiny they are.

They're pretty cool to watch, as they're growing they just look like flat discs of color, not balls at all.

Drained it off in the morning and we had these!

And everyone loves them except the redhead.  Oh well.

Seriously, the teenager likes them.

They don't last forever (I think I see mold spots on ours a week later?) but they are a REALLY interesting feeling and pretty inexpensive.  Next up:  a new rice box.

Swings and stuff

The redhead recently finished a session of physical therapy, and is now working with an occupational therapist (along with vision therapy, speech therapy...).  Every time we go in, I wish we could somehow have the perfect setup for him at home. 

I figure I'd need... $200,000?  :)  For a bigger house with enough room for a big therapy room/gym, AND the equipment (even seemingly simple therapy equipment/toys are SO expensive).  My boy LOVES the ball pit.  Holy cow, I've never seen him so chill. 

Check out the awesome selection of swings:

This one has a bungee:

Also good to sit and practice calm breathing...

Or angle and crawl up/jump off.

Let's talk about that awesome crash pad, right?  It's so great for crashing, relaxing, pulling across the floor, falling into, crawling over (but where would I put it?).

Just a ramp and a scooterboard, that's all.

This one they call the 'washing machine'.

It's a giant canvas bag with ball pit balls in the bottom.  My kid is in there!

You can leave the top open or velcroed somewhat shut (I was surprised he wanted the top shut!).  Then his OT 'swished' the bag around.  A mini- ball pit!  Still, it would take up considerable real estate in here!

Their giant supply closet (room) is amazing.  Stacked with sensory bins, ride-ons, puzzles and all kinds of treasures!  If only, right?

I'll have to show you what we CAN do here at home another time, instead of focusing on what I can't have.  But a girl can dream!

I'm not good at this stuff.

Kid drama stresses me out.  My kids aren't drama magnets, thank goodness, but with a special needs kid ... drama is just part of the package.

And I'm not good at letting it roll off my back.

Well, sometimes I am, because goodness, I have to be.  Sometimes I'm not.  Hormonal factors may be a determining factor in that...

So I fixate on stuff.  And I stress myself out.  And I find it way hard to stop.

 

But sometimes it's HARD.  And things suck, and people are lame.

Like when your kids are all excited because they can see all the neighborhood kids across the street all outside playing in their costumes and get their shoes on to go play ... and you have to stop them just in time because you realize it's a Halloween party they weren't invited to.

But everyone else on the street was.

And it's right there.

SUCKS.

That meant not only were they not invited, but they had to see some of it, and there was no one else to play with (they were all at the party!).

And I was the one who had to give them that bad news (as lightly as I could!).

Come on.

That is super lame, right?

Luckily only one of my kids was in tears.

So I have conversations in my head.  Because do I say anything? (no.)  But if I did, here's what I would say.  And I do it over and over in my head until it's perfect.

I realize I tend to do this with anything that's stressing me out.  And I need to stop.  It's not good for me.  And it's not like I'm really going to confront the rude people.  Sometimes the kids get over these things faster than I do.  But when my kids cry about something someone else did to them... my heart just breaks for them.  Life is hard.

How do you stop your brain from fixating on hurtful stuff?

Anyone?  Hoping just expressing this helps.

(Don't be surprised if this post disappears soon.)

I tried publishing this without a photo... but I couldn't, so I will leave you with a photo of a better friend day.

 

On Audiobooks

I do NOT love audiobooks.  I love the IDEA of audiobooks, but personally, I don't really enjoy them nearly as much as reading the page.  Maybe cause I'm a visual person, or maybe because I am (apparently) super picky about my readers/narrators. 

I'm okay with most things just being narrated, but when it comes to dialogue, I am picky.  Some readers make seriously unnatural inflection happen during conversation.  I'm sure they've heard people talk before, right? Who talks like that?

Pet Peeve:  When men (esp. British Men?) voice women and the only difference is DRAAWING out the words to make them sound whiney (whingey?).  Really?  Is that how you think all women talk?  Uncool.

Anyway, we've discovered that the redhead really likes audiobooks.  While his sibs flew through the Harry Potter series, he is working on listening to them.  Audiobooks is what made him get into chapter books, actually.  We listened to Winnie the Pooh ones when he was tiny, but it really started with the Magic Tree House series (read by the author!) that we got in Wendy's kids meals years ago.  We collected a handful of them (Bravo Wendy's!  Excellent prize, do it again!) and he went from listening them to reading them.

More recently, he LOVED (not kidding, LOVED) Stink & the Great Guinea Pig Express (read by Nancy Cartwright AKA Bart Simpson - she does a FABULOUS job!).  We all loved this book and the Solar System Superhero one.  The boys had already read some Stink and Judy Moody books, so it wasn't a jumping-off point, but still so fun.

During our study of the Civil War, I found the American Girl - Addy books on my library website.  This reader was excellent as well.  This was a cool find, because I could login to the website on my ipad while in the house/garage (wifi only), then plug it in to the van radio and listen while we drove. We did some of the Story of Us (great reader!) this way as well (yay for libraries!).

Most recently, the boys have been listening to the Spiderwick Chronicles  (read by Mark Hamill AKA Luke Skywalker - the kids LOVED that little fact and he does a great job). 

Now, on to ones I haven't liked.

Number 1 (kinda):  The Story of the World.  Darn it, we wanted to like this one, but after checking out the Modern History one last fall and trying it for all of 4 minutes... none of us could take it longer.  We couldn't STAND that reader.  None of us.  BUT.  Good news is that I decided to try again, and checked out the Ancient History one, we tried it today and the boys totally liked it.  Weird.  I found the reader less irritating this time as well.  So I ordered it.

Number 2 (kinda):  Harry Potter.  Ok, I know this will be disagreed with, but I don't love this Jim Dale guy.  He's just ok.  Once again, his dialogue is weird, esp. with girl voices, but it's not horrible, and I can understand why people like him.  The kids don't have a problem with him at all.

Number 3 (definitely!!!): Fablehaven.  Whoa.  This guy.  NUTS.  Has he ever had a conversation before?  Because it does NOT sound like it.  Crazy inflections.  HOWEVER since the other sibs love the Fablehaven series, the redhead likes this enough to listen to it and 'catch up'.  The second book isn't AS bad as the first so far... or we're getting desensitized.

I've been thinking of audiobooks a lot because the redhead will be in the car a bunch this year back and forth to physical therapy (and maybe OT as well).  SO... audiobooks will be perfect.  Also while he is a reader, he gets intimidated by the thick chapter books that his siblings devour and may have some cognitive/LD issues that we haven't quite found yet. 

So I'm looking for more audiobooks!

I found a few we hadn't heard of on this post, so we will be checking those out.

What others should we look for?

Special Needs Siblings

Recently there was an 'Autism Night' at a local water park.  We've never dared to take the kids to a water park before (also I picture the Malcolm in the Middle waterpark episode- ew :) but the tickets were cheap and we decided to just do it.

So glad we did, it was a really fun night! 

I was much more relaxed knowing that the people there were not going to blink if the redhead had a meltdown (he totally didn't, he had a ball, though there was one moment he yanked something from someone else).  I think everyone else there felt the same way.  No one looked twice at someone having a meltdown (I only saw a couple at the end), having a hard time waiting in line, or squealing with pure joy.  There were some kids there who were more severely challenged than others.  It was a great night to go.  Everyone was super nice and happy.  Most people hadn't been there before, it's hard to pay full-price entry when you don't know if it'll work out!

I loved watching the siblings.  There were kids helping their spectrum siblings around the lazy river, or keeping track of them on the slides.  I remember one boy had a tight grip on his little sister's arm the whole time.  She led him around and they went down slides together.   Once a teenaged boy came off a slide behind us and very sadly and forlornly called 'Mommy?  Mommy, where are you?'  His younger sibs were there in less than 5 seconds (of course I had my mom radar on, so I was on it if that hadn't happened! :). 

All those awesome siblings.  I remember thinking 'Way to go!  You guys deserve more credit or something special.'  Including my own kiddos.  But on the other hand, this is their life and it's the only one they know, and their reward is to be a more loving, caring, open-minded person.  That is a pretty awesome reward.

Thanks Autism Journeys for sponsoring an awesome night!

Bummer

Here's a quote from the latest post on the Utah Autism Coalition website:

"SB55 was substituted this morning with a bill that appropriates more money to the pilot program created last year and increases the age cap from age 5 to age 7. Insurance coverage for autism in Utah will not happen this year."

I'm bummed about this.  It seemed like the last time a major bill was introduced that Autism Speaks supported and had people rally behind it too was switched out - to one that was not as good and Autism Speaks pulled their support.  I'm afraid that dissenters + people not really paying attention just kinda go 'We DID pass SOMETHING for Autism, that's good, right?' and then the thing we really need to happen just takes longer.  It's not good enough.

Insurance coverage for autism in Utah will not happen this year

Well, maybe this year we got one step closer, but it NEEDS to happen, folks!  Preferably while my autistic child is still a child!  We can do so much for these kids, and NOT just the ones who are under age 7.

Utahns - Action Needed!

I emailed some family and neighborhood friends about this already, then decided I'd post it here, too.  If you live in Utah, there is a bill coming up in the Senate that is important and personal to me:  it is State Bill 55, which would require insurance companies to cover kids with autism and provide treatment that now is not covered.

Yeah, it's a bill is personal to me.  If you know me, you know a family affected by autism, but chances are, you know many more.  Utah has the highest rates of Autism, yet we're one of the states that doesn't require insurance to cover treatment.  Lame!

Autism is expensive.  Speech therapy, occupational therapy, psychologists/psychiatrists, private lessons etc.  We recently took the redhead to an autism specialist who recommended a course of treatment that would cost us $48,000 a year.

Can you afford that?  We sure can't.  We are trying to trim the plan and asking second opinions.  He's ten, so he isn't 'early intervention', but are there therapies and things we can do to help him learn/make his life better?  Absolutely.

I'm not just talking 'autism treatments' either, I'm talking ANY medical care.  Did you know that some insurances won't cover kids with autism for ANYTHING?  Like well-child visits, illnesses, injuries.  So some families are in deep, and praying their kid stays healthy.

Uncool.

It's not a way you think that autism could affect your family, but it even effects our career choices.  We would love to someday start our own company.  But we can't, because our son probably wouldn't be covered if we had to buy our own insurance.  So we're still working for the man. 

We've been talking a lot the past year about whether or not we will be moving.  Besides looking at states with better air quality (we'd love to be rid of Utah's horrible air) we have also been checking states for autism insurance laws (and homeschool laws - why is moving so complicated?).  I hope this bill passes and gives us another reason to stay.

So anyway, I urge you to take a second and email your senator.  Here's a link with a form and prewritten letter (feel free to personalize/write your own):  click here.  Do it now, it may come up for debate VERY soon.

It's important, and it just takes a minute.  Let's make Utah more awesome.

Thank you!