Wednesday, April 30, 2014


More and more lately I've realized how parenting the children that I've been blessed with has changed my entire view of the world, and how the experiences of the last few years have really shaped every aspect of our lives.

In some ways, the topic I'm slowly sidling up to writing about, is one of the ones that had me so relieved when we finally had a diagnosis because all of the sudden it just made sense.

Before the diagnosis, before I knew anything about autism or SPD, I wasn't totally sure why there were certain parts of our daily routine that were just so different and at times so hard.

It's like back when we lived in Florida and all the other moms could take there kids out and have them play in the yards and street area in the residential part of the law school... I tried it a few times... and spent the entire time chasing Mae down the street.  I would put her down, to play, and she would just take off running as fast as she could in one direction, down the middle of the street.  She wouldn't pause and she wouldn't look back to see if I was coming to get her.  She would just keep going and going.  She was only a year old and it was terrifying and exhausting.

It didn't take long before I stopped going out there altogether.  I couldn't keep up with her.

I was still sick from the miscarriage for many of those months and it seemed so pointless.  I couldn't talk to anyone because I was just chasing, chasing, chasing her any time her feet touched the pavement.

So we went to parks that were totally enclosed and when other parents walked in and left the gate open and she would turn towards it, her eyes bright with excitement, I would race over and close it before she could make her escape and head straight towards one of the many, many ponds or lakes that dotted the landscape.

I was afraid that people would think that I was snobby or didn't want to make friends because I just couldn't bring myself to take her down there again and chase her down the street and not end up talking to anyone... but I was too tired and embarrassed that I couldn't keep up with my one year old to do anything about it.

Life went on.  The last two and a half years have flown by.  And I understand now why life has always been different for us.

The autism acceptance walk was at a beautiful park this past weekend.  It was one I'd been invited to last year on a day when we couldn't go.

When we went to the walk I couldn't stop staring at the play areas.  They were quite lovely.  One was a splash park and the other part was a big castle play structure and I kept trying to wrap my mind around how we could make it work, how I could bring the kids there by myself this summer while Paul is studying for the bar.

Finally, when I took a deep breath and was honest with myself, I had to admit that at this point in our lives it's just not possible.  I can't take them to this park without Paul.  The splash park had a fence, the kind with three horizontal boards with giant spaces between them that either Patch of Mae could get through in about five seconds, and the playground wasn't entirely enclosed.  Both were next to a lake.  There was no way I could take Mae and Patch to that particular park on my own, when Patch could head in one direction giggling for me to chase him, while Mae sprinted straight towards the lake, flinging her shoes as she ran.

Other people see a park.  I see a totally uncontrollable area, with a highly attractive, dangerous feature.

I think that's one of the things that can set special needs parents apart from other parents and can make us a little harder to understand and even cause misunderstandings.  Our views of the world are often shaped by our experiences and I know that in many ways I see the world differently than parents who've never had to worry about a kid sprinting into a busy road or running and jumping into deep water, which is just so irresistible.

These days, when I hear suggestions about things that I should be doing, extracurricular that I need to be adding to our schedule, I just sort of smile and shrug.  I know that most people really can't probably picture how different our lives are from the norm.  Our little world works really well for us.  I'm having an amazing time starting first grade with Sadie (we're getting a head start so we can take a nice little break in October), and we have therapy seven times a week now, for just about 20 hours altogether.  That doesn't take into account doctor's appointments or the fact that nearly all the time I don't have a car of my own to drive.

When I started out I meant to write a post about special needs parents and how things that seem so basic, like going to a playgroup or homeschool group, things that seem easy and enjoyable to most people, can seem like an insurmountable challenge to a special needs parent who's facing the task of tailoring these tasks to their particular child, or even just surviving them with their children.  But then I realized all I could write about was myself and my own experience and how the blessings and challenges we face have shaped our world.  For us that means that maybe we leave out things that other people think are necessary.  It means not as many play dates or as much socializing as I would have chosen if I had designed a dream schedule with no knowledge of our actual lives.

Yet somehow it works for us, without leaving me feeling like I've somehow failed because I can't sit and talk with the other moms while my kids play happily at my feet... because right now, that isn't in the cards for us.  Maybe it won't ever be.  But what we have instead, while different, offers triumphs and laughs that I couldn't have imagined before we set out down this path, moments that sweeten those hours that are a little harder to muscle through.

It might make us seem a little strange to other people, and even antisocial when I'm too tired to even think about answering the phone, much less to plan to do something involving people and playing and leaving the house, but it's also pretty amazing and wonderful... and while I can't quite wrap my brain around what it's like to sit and talk and watch my kids play in an unenclosed space (seriously, just thinking about it kind of stresses me out... because... she's a runner), I do know the absolute joy of being on a three day high because when I tucked Maggie in last week she picked up her tooth brush and pretended to brush her teddy bear's teeth and I walked around the house for at least 72 hours glowing because she'd just engaged in imaginary play and how I even took a moment to shoot off a quick email to our coach from the university to let her know about the big moment, which would be completely and utterly mundane and unmemorable if our world were anything other than exactly what it is right now.

Monday, April 28, 2014

Our Day at the Autism Society of Michigan's 5K for Autism Acceptance

What can I say, when I saw the name of the race, a 5K for Autism Acceptance, I was sold and set out to convince Paul that he absolutely needed to take the morning off of studying, and that Sadie would take the morning off of ballet and that Mae would take the morning off of therapy and we would all head out to a nearby park to take part in the event.

And so we got the kids up and dressed bright and early and bundled them into the car with the old stroller and set off for the park.

At the start line we hung way, way back to let all the runners... and mall walkers... go in front of us.

In the last little bit somebody got pretty tired... but Daddy came to the rescue and carried her part of the way, at least until she spotted the finish line...

The lake that we walked around.
Then she was off again, running to cross the line before her brother and sister (and yes, we were very, very slow... although we weren't quite the last ones to cross!).

Here we are after the race with the little kids enjoying apple juice in their sippy cups.

It was quite the day and it was nice to steal Daddy away from his studies for a couple hours before he got back to work!

Sunday, April 27, 2014

WIWS: Baby Flutters Edition

I'm now 15 weeks and I'm finally feeling baby flutters every single day.  I say finally because, while I know 15 weeks is early from what all the websites I've looked at usually estimate, I've felt them at least a couple weeks earlier with both my second and fourth pregnancies (Mae and Patch) and so as the weeks went on and I still hadn't felt anything I was starting to worry more and more.  Now I'm feeling those familiar little flutters and movements and it's so incredibly reassuring.

Today Sadie and I went to the 9 am Mass, since Patch and Mae seem to have the flu, and then we rushed home so that Paul could make it to the 11 am Mass (he barely made it... we rushed home after the final blessing at 10:25, hoping we were giving him enough time to get dressed since watching Mae and Patch is a full time job, especially when they don't have a big sister around to distract them from all the trouble they can get into together).  

After Paul headed off for more frantic studying in the law library after lunch, Sadie snapped a few pictures of me while repeatedly "accidentally" getting Patch in almost every single shot (they both giggled hysterically throughout this process).

And really with most of the pictures coming out like this

He looks good for being sick, right?
I'm hoping that means he's on the mend... although it seemed
to creep back up on him around 4 this afternoon.
I don't really think they can claim it was too much of an accident.  I now have many, many pictures of Patch's still-covered-in-lunch face.  He was clamoring to get between me and the camera.

Although she got quite a few pictures of me, in which I look kind of shocked and not at all like I was ready to have my picture taken.

This is the best one...
The dress is a Banana Republic steal that I found on Thred Up (it's still $10 off your first order and there are so many choices that are on the site for less than $10 that your first order could nearly be free!  And since most of my wardrobe is now from Thred Up I'm definitely a fan!), with a sweater that I got when I was pregnant with Sadie from Motherhood Maternity and boots that I could probably do without now that there's no snow on the ground, but that are just so comfortable I'm having a hard time trading them in for regular shoes.  The dress isn't maternity, but it's a wrap dress that was slightly too big when I bought it since I had apparently unknowingly gone down a dress size back in early December, but it's perfect right now and should at least last for a good portion of this pregnancy and will be perfect post pregnancy for nursing..

Sadie was all dressed up in pink in a dress that we got back before Christmas from Zulily, along with shoes that I found long, long ago on clearance and purchased knowing that someday she would love them.  And she does:

Blurry or not this next picture is my favorite!  My little ballerina took a moment to strike a pose.  

That's our Sunday in a nutshell!  For more WIWS head over to FLAP!

Answer Me This: Church Music, Milk and Introverts who are never alone!

1. Do you hate happy clappy church music?

I used to.  I really did.  Some of you can probably remember the posts about how much it bugged me from years past.  

But honestly, these days, if I'm getting through an entire Mass without having to leave half an hour before communion because someone has had a meltdown 60 minutes in and just can't make it any longer, I'm pretty thrilled regardless of what the music sounds like.  

Besides... I know a certain three year old who happens to be a big, big fan of happy clappy church music.  Her whole face is transformed, just like it is when she sees a picture of Saint Pope John XXIII.  She's the same three year old that got to crawl into bed with me this morning because she was sick and who promptly grabbed my hands and started folding them in front of her in prayer, and who after making sure they were just right, copied with her own hands.  She has also been spotted raising her little arms in the narthex with a huge grin on her face with the priest as he says "for thine is the kingdom and the power and glory..."

So while happy clappy church music isn't my cup of tea, it's one of those things that doesn't bother me any more, because anything that makes Mae's face light up with joy is automatically given a pretty good boost in my book.
I might be a little jealous of those
members of my family who can fall
asleep absolutely anywhere!
2. What is your priority: eating or sleeping?

Sleeping wins nearly every time.  Especially now, with finals upon us.  

I think at the moment the many, many food aversions I've been experiencing aren't helping either because not a lot sounds good and Paul's usually in the law library studying and so I make the kids a meal and then nearly forget that I didn't actually eat dinner with them until it's 10 o'clock at night and I'm in the middle of working and trying to figure out if it's really worth it to wander downstairs and fix something for myself when I'd really just like to finish up the orders for the night and go to sleep as soon as I'm done sewing.

It's something I'm working on though... who would think that forgetting to eat would be second trimester problem?  I'm pretty sure that's a new on this time around!

3. What type of milk do you drink in your house?

My first Thanksgiving
without any dairy of wheat in any of the food...
It was a challenge!
The vast majority of the milk is almond and that's what Paul and the kids all drink since neither Patch or Mae can have cows milk without bad, bad things happening.  However now that Patch is weaned and I'm pregnant I have one loan half gallon of vitamin D whole milk that helps out with the "I need milk right this second" cravings that caused poor little Patch to get cut off at 16 months, instead of closer to when the new baby arrives. 

Even before dairy was basically banned from our house though I'd banished all low fat, no fat milk options... the more I researched it the less I wanted it anywhere near my refrigerator... although these days with all the babies and the fact that two people can't have wheat and two can't have dairy has limited our options all around... Oh well... I like to think if nothing else it's made me a more creative cook and it has definitely made me a more creative baker!

4. What is a book that changed your perspective on something?

Back in college I probably would have said something by Marx or Locke or John Rawls. 

Now a days the two books that came to mind were Alice von Hildebrand's the Privilege of Being a Woman and the Bible.  

Of course, the Bible wins because, although I'd read it and gone to Bible study for the majority of my years, my eyes were totally opened and my life transformed when I read John chapter 6 back in 2006 and realized that there was no way that Jesus was speaking symbolically.  

I'd say that was one of the single most important moments of my life, when my perspective shifted and it changed just about everything.  

5. Who is your favorite saint?

Saint Therese. After reading about her over and over again with Sadie and hearing Sadie talk about her for the past two years Sadie's enthusiasm has absolutely been contagious and while there are many saints that come to mind (Saint Martin de Porres, Saint Catherine of Sienna, Saint Michael, Saint Anthony... the list goes on and on...), she is nearly always the first that comes to mind.  

Honestly... if I let her, she would probably
wear this.... oh I don't know, half the week...
6. Introvert or extrovert?

I'm an INTJ, heavy on the I, so I am most definitely an introvert.  To be honest, the idea of being social is almost as exhausting to me lately as actually going out and being social... but that may be because between the doctors appointments and the seven sessions of therapy for Mae each week, most of which are in our house, I'm hardly ever alone, so going out and actually doing something social usually sounds like it's just a little bit too much!

And in totally random posts.. on cats, mice and the canonization

It's just about time to go to sleep.  I've finished up my sewing for the night, and have actually checked a surprising number of things off of my to do list, like printing out the city tax information to send in on Monday to beat the deadline next week, and I have even opened the bedroom door, because I'm pretty sure that Kitty has already met his mouse quota for the night and is hopefully not going to try to force any more mice on me.

If he wasn't a mouser when we first brought him home, he's most definitely a mouser now and we're developing a nightly routine where I sit down to sew and he trots up the stairs yowling loudly to let me know that he's bringing me a present, and I quickly go over to the door and tell him "thank you ever so much Kitty, but I think I'm going to close the door now!" and he proceeds to spend the next ten minutes trying to batter down the door, while yelling at me to let me know that he has something for me, because he really wants to share (and I suspect that he thinks that I'm the worst hunter in the world and can't feed myself... or something along those lines by the sense of urgency with which he brings me these gifts...).

Still, I can't help but wonder, if the mouse population in the house was already quite large when he arrived, even if he brings me one mouse a day, every day, are we really putting a dent in the number of mice around at all?  Or maybe they'll be encouraged to search out a new cat-less home now that the weather has improved?

Because the look she gets
on her little face is totally similar to the look
in this picture, every time she
sees a picture of him!
In other totally random news, I find myself feeling all warm and happy every time I see a picture or or post about soon to be declared Saint Pope John XXIII (well almost, but I'll get to that in a second).  The reason is kind of funny.

Before the recent canonization I hadn't given him all that much thought.  But lately there have been pictures of him everywhere.  And for some reason Maggie is extremely, extremely fond of him. Lask week I found her clutching a prayer card with his picture smiling happily and when we were at Mass on Easter she sat, beaming when she saw a massive poster of him in the narthex (I think it bought me an extra five minutes before the wildness set in).

One of the things I've definitely learned in the last few years is that when one of the kids develops an attachment to a certain saint, I instantly find myself thinking of them much, and am much more likely to find myself asking for their intercession during my prayers and randomly throughout the day.

Now on to the one thing that I did find slightly annoying this morning.  I was watching the morning news show that I sometimes watch online and a segment came up on the "controversy of the beatification of Pope John Paul II" and it was, unsurprisingly, the sort of coverage that made me want to bury my head under the covers and go back to sleep (if I hadn't already been up and out of bed) when suddenly they were interviewing a man in a collar and I thought, here we go, maybe this is actually going to be worth watching.

Instead he said something along the lines of "Well, being a saint doesn't mean a person is perfect.  It simply means they lived a very good and virtuous life." and I couldn't help but wish he'd thrown in something like "being declared a saint means that the Church recognizes that that person is in heaven" because somehow that was left out of the entire report, and let's face it, being declared a saint means a lot more than that a person lived a good life (although who knows, maybe he did say that and the interview was heavily edited for that particular sound bite).

And that is my mini-almost-rant for the day (I just shouldn't watch the news really...).

I think I'll get some sleep before it's tomorrow and hope that everybody in our house "sleeps in" until at least 6:30.

Friday, April 25, 2014

14 Weeks...

Okay, okay, I know.  My stomach muscles just don't do what stomach muscles are supposed to do anymore.  They're just like "Pregnancy hormones!  Okay, you win!  We give up!" and turn completely to mush.  

In fairly unbelievable news I stepped on the scale today for the first time in weeks.  I was afraid to look.  I didn't really want to know.  I was waiting for it to tell me we were 20 lbs in at 14 weeks, or something like that.  And it was still hoovering somewhere around 6 lbs.  I'm not sure I believe it.  We'll see at the next doctor's appointment.  

In other news, look:

It's just waiting for my little white sweater!
I had a gift card that I used to get this dress and it arrived in the mail this week and from the front you can basically not see the bump (with the whole hands strategically placed on my waist thing going on).  Then I turn to the side and... well... you've seen the pictures and get the idea.

Now on to week 15.  So far this pregnancy seems to be flying by faster than the others.

On a funny note, today in the checkout line I was by myself and a lady who was in the third trimester started telling me third trimester horror stories and kept saying "you just can't understand until you've been there" and I smiled and laughed and joked along with her and then after about five minutes she said: "because you don't have any kids, right?" and of course I said, "Oh, the first three are outside with their Dad and this one is due in October" and the shock was the same as it was just about every time I hear that question when I'm by myself, and I came away chuckling to myself because horror stories about pregnancy are so much less effective these days.

7 Quick Takes Friday: Where All of Patch's Dreams Come True

Yesterday was an "offer it up" day and while I did manage some sewing, my brain just wasn't thinking enough to actually post on the blog.  The culprit?  A bad, bad migraine.

It could have been worse.  My face and hands didn't go numb this time and I wasn't slurring my words... but pain wise it was definitely in the "bad, bad" category.

The only part about being pregnant (or nursing) that is consistently really difficult is the migraines.  All the prescriptions that I used to take, six years ago (the last time I wasn't doing one or the other) worked really well.  But none of them are approved for pregnancy or nursing so... I'm left with...  Benadryl.

It works on my migraines.  In fact, it works 100% of the time, so far, as long as I take a full 50 mgs.

The problem, however, is that I can't really take a full dose and then make it through a day with the kids by myself.  Or finish my orders for the day, or really get anything done... because once I take it I'm pretty much asleep.

So I knuckled through saying things like "can we please use indoor voices" and "no Patch I don't think you need to be sitting on top of Mommy right now" and when I had to be up in the kitchen because little people still needed to eat, wandering around the house checking labels for aspartame certain it must have been something that had weaseled its way into my kitchen (it's my #1 migraine trigger and causes migraines that are more intense than any of my other triggers).

Today's better though and I'm just hoping it stays away when the medicine wears off, because I have work to do!

In between orders I've been working on coming up with a new pattern for infinity scarf/headcoverings.  I've got the double loop scarf pattern perfected and now I can't wait until I have a moment to try it out on lace!

Patrick's big day has finally arrived.  He got the one thing that he's been wanting for... months.  It just so happened that I got a gift card to Target at my last OB appointment, for taking a ten minute survey on pregnancy for a study at the local university, and I knew just what I was going to use it for.  To make all of Patrick's little baby leash dreams come true.

You see, each time Patrick gets into his car seat he pretty much loses it and starts screaming until someone hands him Maggie's "monkey leash" and then he calms down and cuddles it and dreams of the day when he'll someday be big enough to have one of his own.

So I ran into Target last week and discovered that they had one pink bunny leash and one blue owl leash, and a few minutes later I was headed back to the car with the owl.

I decided to let him give it a try on our walk out to the yard, since when we reach the gate I have to let go of either Mae or Patch's hand to open it, and whoever I let go of invariably bolts.  Patrick was thrilled.  He wore it on our short walk and then kept it on during the entire play time outside before proudly wearing it back into the house.

Dare I imagine the comments I'll get if I take both of them out wearing their harnesses?  I imagine the baby bump will even up the chances of hearing something incredible by a few points.

Here he's trying to express just how disappointed he is that all of the eggs outside that he's found since Easter are empty (probably because a certain three year old was discarding eggs after the ate the candy out of them and I didn't catch them all!).

Patrick's favorite phrase "uh oh" is beginning to be replaced with a new one... "A-chooooo!"  He says it loudly and then looks around and waits for someone to say "Bless you!" and then smiles hugely that he's tricked us into thinking that he sneezed.

Thankfully he is still using "uh oh" to announce that he's about to do something that he isn't supposed to be doing.  It's nice to have a little bit of warning.

This weekend we'll be participating in the Autism Acceptance walk in our area!  Sadie's missing ballet and Paul will be taking a quick break from his frantic studying from finals, but I'm really, really excited that we're going to go and participate in the walk as a family!

A certain husband nearly always comes home from work with interesting stories. Last night it was that, in the course of doing his job as a doorman, he helped apprehend somebody who had just gotten away from a police officer and had taken off at a sprint (the police officer who'd been making the arrest did yell "get him" and so he did).  Sometimes it seems like there's never a dull moment around here!

For more Quick Takes, visit Conversion Diary!

Tuesday, April 22, 2014

My Top 5 Pet Peeves as a Mom of a Child on the Spectrum

Since plunging into the special needs world last fall, not having realized before then that I was actually a member of this particular parenting club and had been for a solid three years, I've discovered amazing support, advice and friendships.  I've also discovered that there are things that I never, ever could have imagined, things that people do and say have shocked me and made me feel sick to my stomach since joining this particular parenting "club."
In general, when it comes to questions about autism, I'm pretty hard to offend and tend to be an open book.  I think that genuine questions are great and I love answering them.

Part of spreading the type of autism awareness (and acceptance) that I'm on board with promoting involves answering questions and so far I can't think of any that I've been asked that I haven't been willing to take the time to answer.  

Still, I have to admit there are comments and statements that cause an instant, knee jerk, less than charitable response to come spilling out of my mouth (or keyboard) and today I felt especially inspired to write a post about them.  Here are my absolute pet peeves as a mom who loves a little girl who sees the world a little bit differently than everyone else, with all my heart. 

Pet Peeve #1- People who prey on vulnerable families to make a few bucks.  There's one thing that can get a comment deleted faster than just about anything else (okay, other than out and out profanity since that's so easy to spot).  It's linking to a site that promises to cure my child's autism in 5 easy steps (or whatever it is they're selling).  

These people have learned that there's money in taking advantage of parents who are often desperate enough to try just about anything to try to do something that they think will help they're child, and they're trying to ride that fear all the way to the bank, even if it means doing something like... oh, I don't know... encouraging parents to have their children drink bleach.  

It's easy to spot these sites.  They generally promise to "cure" or "resolve" your child's autism for the low, low price of $xxxx (generally not a low price at all... but come on, it's worth it, right?).  Just fork over the money (sorry, what they're selling isn't even evaluated by any medical body, so insurance won't help) and they'll give you back a shiny new neurotypical child.  

Think of it this way.  Autism is in the news a lot.  Actual progress in helping autistic people, and even not so helpful stuff, makes the news, a lot.  Do you think that if there really were a "cure" it would be on some obscure website begging to take your credit card to ship it to you in the mail (let's not even delve into what I think about the idea of a cure for a certain way or processing information, that is and has been it's very own post)?

Run, don't walk, if you come across these types of snake oil salespeople.  

Pet Peeve #2- Scare Tactics.  I know I've talked about this before, maybe a little too much, so I'll try to keep this short and sweet and not name names.  Any organization/person who tells you that your life or your marriage is over because on your children has gotten an autism diagnosis from a doctor is out of their mind.  Remember that they don't know you or your family.  

Every person in the world faces their own difficulties in life.  Some challenges are harder than others, but they're each our own and I don't find reading about how afraid I should be to be at all helpful.  It doesn't help me reach out to my daughter or communicate with her, in fact, it absolutely could hinder it if I embrace the notion that her way of communicating is somehow inferior to the ways in which the majority of people communicate.  

The first time I used a therapy technique I learned that involved imitating Mae's sounds and motions, her whole face lit up.  We couldn't even go on because she wouldn't stop hugging and kissing me, over and over again.  She was thrilled that I was attempting to communicate with her on her own terms.  And suddenly she was much, much more interested in trying to communicate in more typical ways, as if somehow I'd extended a hand and was helping her over the span of distance (in communicating) that stood between us, by showing my interest in her own favorite form of communicating.

If I'd embraced the fear and had reacted as if her way of communicating was wrong, I don't know if we ever could have reached the point we reached in that very first session.  

So I'm not a fan of any method that uses fear to spread "awareness."  Even if fear is a lucrative marketing tool.

Pet Peeve #3- Studies that Announce How Mom is to Blame This Week.  Nearly every week a study is released, and is quickly picked up by the major networks, claiming to have discovered the underlying cause for autism.  9 out of 10 times, it's something that the mother did at some point along the line.  

In the "olden days" (a few decades ago) doctors blamed refrigerator moms for "giving their kids autism by being too cold."  Things have changed, but not all that much.  Now if you ask people why they think the autism rates are "increasing" (I lean more towards the idea that doctors are more aware of the various signs of autism and how to identify it, so there are more accurate diagnosis' for kids who would have gone without help a decade ago) they'll often say something like:  "It's because moms eat too much junk food."  

Today I learned that Mae's autism was "caused" by the spinal that I had with my c-section.  Last week I'm pretty sure I read something that said that it was because I brushed my teeth with toothpaste that had fluoride in it.  I'm awaiting the day when there's a study that says something like: "All mother's of kids with autism have, at some point in their lives, imbibed water!  Water causes autism!"  

It's ridiculous.  

Pet Peeve # 4- There are people who actually say: I hate "autism moms."  Did you know that there are people who actually go around sharing that they feel this way?  It's a sentiment I've seen splashed across the internet. There are actually quite a few women out there who feel the need to share this every single time they hear the word autism.  

It's weird.  I mean, generally it's not socially acceptable to say "I hate (fill in the blank with a group of people you believe a stereotype about and just can't stand)."  It's just not.  But I'd say that while reading about autism I come across this at least once a week, if not more often.  

Generally, if someone decides to feed the troll by responding, they'll spout something about how they raise kids that are spoiled brats and don't expect anything from them.  

I'm sure there are probably autism parents that let their kids get away with a lot, just like there are parents of neurotypical kids that let their kids get away with just about anything... I've just never met any.  Most of the parents of kids on the spectrum that I know, are trying to help their kids be the best they can be and that absolutely involves consequences and discipline (something I know I should write about more!  It's just not something I've thought much about writing on, since I'm usually trying to think of the more positive aspects of our day to share).  

So these types of total blanket statements always have me shaking my head... and they have me wondering why so many people think it's an acceptable view to share with others!

Pet Peeve #5- Anyone who Talks About Autism and Eugenics in the Same Breath.  I'm not sure how much I can elaborate on this one without breaking off into a rant about how evil this is.  Because it is evil.  Can I tell you how incredibly, incredibly grateful I am that there isn't a prenatal test for autism?  I'm so, so grateful.  I don't even want to think what the "termination" rate would be for those poor babes that came back as potentially being autistic.  

If you doubt this is true, try reading articles about mom's who kill their autistic children.  Generally women who kill their children are vilified in our culture.  Unless that child was autistic, in which case both the media coverage and the public reaction to the media coverage involves a sudden understanding of why the mother did it, because our society is very, very quick to put those who are different from the norm into a category that is somehow less than human, and apparently less deserving of our protection than baby seals or endangered whales.  

I absolutely believe that this is in large part a result of people who indulge in the fear mongering I mentioned in Pet Peeve #2 and it's part of why I take that sort of tactic so very seriously.  Dehumanizing people is never an appropriate fundraising technique and it has far reaching consequences.  

And that is my list of things that drive me crazy about this zany world that we live in and it's approach to dealing with those on the spectrum!

Occupational Therapy and Our Sensory Seeking Whirlwind: A Mae Update

I look at this picture now and think:
This is what she wanted to wear all the time
when she was 18 months old.
Yup... I'm pretty sure the sensory processing
issues were already in full swing...
Yesterday was the in home Occupational Therapy evaluation for Maggie.

The focus as the moment, as we knew it would be, is on Mae's sensory processing problems.  As some of you may remember, when we first started this whole journey, before we had an autism diagnosis, I started reading about SPD (sensory processing disorder) and was stopped in my tracks.  "This is Mae."  I thought over and over again.

At the time I contacted the government website that I found while googling that is supposed to set up evaluations and was promised that I'd be contacted in two weeks for an evaluation, since she was still two at the time.  Instead the weeks slipped by, she turned three and Early On turned her over to the local school district who said they would contact me the following school year (September 2013).  I sometimes wonder if we'll ever hear from them, just out of curiosity not that we've found the resources on our own.  It's been 11 months since I filled out that form and was told we'd hear from them in two weeks and so far... nothing.  But I digress...  Back to yesterday.

Mae is autistic, and like the majority of kids with autism (the number I've heard quoted is 3/4, although that's totally unverified... it's just what I've seen thrown around) she has SPD.  Gina wrote a great post on SPD yesterday for anyone interested in learning more, that was timely since the subject has been on my mind as we've gone through Mae's OT evals.

Here's what I've learned about our girl, and sensory processing, in the past year.

Your child might have sensory issues
if... they like to hang out in the heating vents
because they feel like hugs...
or something...
Sensory processing problems can present in a lot of different ways.  Some kids have a very low threshold for sensory stimulation.  Sounds or lights or touch that wouldn't bother someone with normal sensory responses, might be unbearable for people on this end of the sensory scale.  Sadie actually likely falls on this end of the scale with her auditory processing (that's another post I've been meaning to write, but my mind is still so blown by everything I've learned in the past few weeks that it might take me a little while to process all the information).

There are also kids like Mae.  She's a sensory seeker.  That means that her threshold for feeling things is much, much higher than the normal person and she needs to have those sensory needs met before her body can really begin to function in the way that she wants it to.

On some of the scales Mae tested as a normal kid.  She has "normal" muscle tone and endurance (Okay, I could help but think "Normal?  Really?  Normal? By normal do you mean, super human?"). She scored in the normal range on emotional responses.

For many of the tests she tested as having a milder problems, like for things like visual processing, which for Mae includes liking low, dim lighting, but also liking to stare into scorching bright light sources.

Things get more dramatic when it comes to her vestibular dysfunction and especially proprioceptive dysfunction.  Her vestibular dysfunction basically means that she has a hard time processing her bodies movements, equilibrium and position.  Using my limited not-a-doctor understanding, I'll try my best to explain it as I understand it.

I think sometimes
when I say that Mae has
super hero strength
people don't
believe me.
So I show them
this picture.
She doesn't quite feel things the way most people do.  When she spins around, she doesn't get dizzy.  She can run and jump and go on roller coasters all day long and her body doesn't really register that she's been doing those things.  She craves them, but they don't really effect her, other than the immediate moment when she's in motion and thrilled to be spinning/jumping/flying through the air.  She loves to hang upside down and sleep hanging half off of her bed.

I imagine vestibular dysfunction is strongly related to all the things that break in this house (proprioceptive dysfunction, which I'll get to next, likely plays a huge role too!).

One of the highest scores for difficulties for our little bunny, came in the form of proprioceptive dysfunction.  This also involves her brain's processing of her position in space, but it also includes how her body processes input from her muscles about weight, pressure, stretching and movement.  Right now her body just doesn't process those things like everyone else's does.

Kids like Mae, with proprioceptive dysfunction, are often crashing into things.  They often love to be tightly wrapped up (like Mae does in her weighted vest), or when she burrows into blankets, and usually love roughhousing and jumping off of things.  Squeezing into the vent and trying to squish herself between the couch and the wall would also be part of her proprioceptive difficulties.

All of these actions are simply ways that her brain is trying to meet her bodies sensory needs, with an extremely high threshold.

Of course describing all the test results would take pages and pages and would range from what I've talked about here to loving things like spicy strong tasting foods and smells.

So what happens now?  Now with all the information that the therapists have come up with they begin formulating a special "sensory diet" for her, so that we can help her meet her body's needs over the course of the day so that she can complete the other "ordinary" tasks that are expected of her without her body causing her to have problems that she has difficulty controlling.  In other words, every couple hours I'll have activities that I need to be doing with her, to help her meet her sensory needs.

If only we had a room with
a climbing wall...
I'm trying not to think too hard about what this means for our schedule, which apart from what I'll be doing with her as part of her sensory diet, involves 7 therapy sessions each week at the moment, along with whatever doctor's appointments we have scheduled.  It'll work. It has to.

One of our main challenges at the moment is finding equipment that Mae's exuberant play won't destroy.  I explained how last year I used Mae's birthday money to set up her own little gym with special sensory equipment, with a indoor rice/bean sand box, an enclosed trampoline, and a sit and spin, and within months the screws had been ripped out of the sit and spin, the metal had come apart on the trampoline and the rice and bean box was making her sick since she wouldn't stop eating it (raw) and had to be moved outside.  So there are challenges coming up with equipment that is exceptionally sturdy for our daring whirlwind.

And that is the latest Mae update.

I'm not sure I could have imagined last summer all that I would learn in this past year... As I write this I almost feel like special needs parents get hands on degrees in a variety of fields based on their kids needs.  What a year it's been!

Monday, April 21, 2014

Choosing Joy in the Midst of Chaos.

Last night, as I sat on the middle of the bed scrubbing Paul's computer, backpack, the walls, the windows, the window sill, the silky curtains I made not that long ago, the quilts on our bed, the sheets and every area that Mae's little three year old hands had touched I found myself thinking about how I was feeling at that moment, and how I could have been feeling and how much of a choice I actually had in the matter.  As I replaced the sheets and went down to the basement to search out new sheets, the thoughts stayed with me.

I could have been upset.  It could have ruined the entire day.

Maggie had yet again proved that no baby gate can hold her when she broke down the five foot gate that blocks the door to her room and snuck into the master bedroom while Paul and Sadie and I were still downstairs cleaning up after Easter dinner.  She'd found Patch's special doctor ordered allergy ointment, a mixture of crisco and vaseline, mixed with cortisone, and had smeared it everywhere (she loves that stuff, which is why I had hidden it in our room... a room she seldom is allowed into).  By the time she was done not only was it covering one half of our room, but she had a couple inches of it smeared into her hair, just in time for today's OT meeting with her newest therapist.

Then she strolled downstairs to show us that she wasn't quite ready for bed yet.

Paul was doing the dishes and taking out the trash and had been talking about how glad he was to be getting out of the house so early with the first week of finals beginning in a few days and projects and papers still unfinished.  I was vacuuming up the egg that Patch had crushed into the carpet in the playroom and sweeping up the spinach that Mae had shredded and thrown on the floor (just before splashing olive oil in my dress at dinner time with a mischievous smile).  Sadie was headed upstairs to brush her teeth when she met her sister on the stairs and shrieked.

And thus the course of the evening was changed for the entire family.  Paul and I dropped everything.  He took a now shrieking, sobbing Mae into the bathroom to try to wash off as much of the ointment as he could (there are few things she hates like having her hair washed... and he's the only one who's strong enough to safely do it at this point), as I began the cleanup process.

By then it had been a long day.  We'd been up for a long time.  We'd missed receiving the Eucharist after a meltdown an hour into Mass.  Everyone was tired (well almost everyone...).  We're starting Sadie's first grade year today and I had a lot to do once everyone was tucked into bed.

Yet as I sat on the bed I found myself smiling.  There are many things that I can't really control in life, but one thing I can control is how I react to what's going on around me.  I can choose joy over anger and frustration (although I'll admit, as we left Mass I felt like frustration was winning... it's definitely a process, and I'm thankful for the grace that allows me to stumble along through it).

At that moment, I could hear Paul talking softly to Maggie in the other room, his voice somehow carrying through the hallways of our old house over the sound of the running water, explaining that she was a little bunny who'd gotten into something she wasn't supposed to have and that meant that we had to get her cleaned up.

As I scrapped the ointment off the sheets and tried to organize the cleanup process, I thought more about my choice.  I could get upset.  I could let my knee jerk reaction to scrapping a think oily ointment off everything from the satin curtains to the beautiful delicate Amish quilt that we received as a gift from my parents when we got married, ruin the night as quickly as the ointment had ruined the curtains.

Or I could think of how amazing the little three year old getting her hair washed in the next room actually is.  How she practically has super hero strength.  How determined she is. How daring she is.  How, when she sets her mind to something, she remains undeterred, despite our best attempts at diverting her.  I found myself smiling and even laughing as I thought of all the ways she'd surprised us over the past few years.

And the cleanup? It went much faster as I marveled at the number of baby gates we'd gone through (I've lost count) and as I thought that perhaps she has a future as a product tester.  She has scaled a sheer 6 foot gate.  She's broken the metal legs off a space heater.  She's yanked a huge bolt out of the wall to remove a heating vent screen.  We have a wooden table that she snapped into three pieces.

I could be upset at the path of destruction that has run across the house these past couple years.  Instead I'm choosing to be amazed.  Things are just things.  They can be replaced.  More often I realize we didn't really need (fill in the blank with something that has been broken) anyways.

And that amazing happy little girl who's always getting into things?  I can't imagine my house without her little chirping laughter filling every corner.

Watching her play with her brother and sister, watching her eyes light up as she sprinted around the yard picking up eggs and then carefully arranged them in her basket, watching her grow and learn and press her tomatoes into my hand at dinner last night while carefully saying "one, two, three, four..." those moments, wouldn't be the same if she wasn't exactly the person that she is, and that includes her amazing strength, both of will and of her little limbs.

If I focused on what has been broken, on the messes that I find myself cleaning up day after day, on the meltdowns, life would be pretty dark... but if I remind myself that those are simply some of the various colors that are being used to make the beautiful, original painting that is Mae's life, than the lows no longer seem all that low.

Determined, strong, independent: these are traits that will serve her well as she works through whatever challenges she faces in the future and while it may mean a little extra clean up for me, it is absolutely and completely worth it.  I may not be able to choose the challenges that we face as a family, I can certainly chose the attitude with which I will face them.

Sunday, April 20, 2014

Happy Easter! Answers, Dresses and Easter Egg Hunting!

He is Risen!  Happy Easter to all of you!  I hope the Easter season is getting off to a joyful start!  The kids woke up bright and early and were ready to race downstairs and... ignore their baskets?  I was baffled.  At least Sadie rushed straight over.  Maggie and Patch ran into the playroom without giving them a second glance.  

I thought I'd share a few of the photos we snapped today, while participating in a couple of my favorite link ups! 

1. What did you and your family wear to Mass on Easter Sunday?

They were in fine form this morning... we made it through 60 minutes of Mass before the meltdown from a certain someone reaches such proportions that we had to leave (in the autism world a meltdown has some things in common with a normal meltdown... kind of like a hurricane has some things in common with a storm... and I'm learning more and more when it's time to say "well, we made it through an hour and the homily was just finished so... we're not going to be here for communion today...").  

I had brought the weighted lap pad, and it worked really well for about 45 minutes, but our time was up.

It was really, really hard to leave early on Easter... but there really wasn't any alternative.

A long time ago I bought the kids Easter clothes on Zulily and they loved them.  They'll be wearing them for Paul's graduation and then I'll finally cave and let them wear them every single day as dress up clothes... which is what they'd really like to do.  Until then I'm trying to keep them nice!

She found a picture of Jesus and sat and cuddled it and kept putting it down to fold her hands in prayer.
My heart pretty much melted.  Enough that I quickly snapped a picture because I want to remember this moment
forever and ever.

This was the best of the pictures with the kids.  As always, someone's not looking and someone's crying.  It's another holiday classic:

I just had to share these too.  See from the front, you can't really tell my waistline is rapidly expanding.  I actually made it all the way home thinking, "Wow, this dress really hides my bump!  You can't even tell that I'm pregnant."

And then I saw this second photo... I'm definitely still showing from the side, even with the full skirt:

(Linking up with FLAP for WIWS!  For more WIWS click here!)

2. Easter Bunny: thumbs up or thumbs down?


We don't teach the kids that the Easter Bunny is real, just like we don't do Santa in that way, but they still think he's pretty funny, kind of like they thought Winnie the Pooh and Mickie Mouse at Disney World were pretty awesome, and they still got baskets and waited impatiently inside while I hid their eggs.

It's not really something we talk about a lot, just like I don't say "this isn't a real story" when we read a fairy tale, although sometimes Sadie does ask "Is this a real story?" and then happily accepts the answer whether it's a yes or a no.  

And when it was time to search they were thrilled to go out and track down the eggs. 

It was definitely the best egg hunt we've ever had.  All three kids searched for eggs and were putting eggs into their baskets.  Mae only picked up the candy eggs, but within minutes her basket was overflowing and she was carefully rearranging her eggs into the most space efficient arrangement.  Patch got the most real eggs.  He also saw Mae drop and egg and picked it up and chased after her and put it back in her basket:

3. Do you prefer to celebrate holidays at your own house or at someone else's house?

Our own house.  Definitely our own house.  After all, at someone else's house I'm going to do a lot of chasing Maggie down making sure she doesn't break anything.

At our house she's already broken everything that is even vaguely breakable (metal heaters, curtain rods... furniture...), so I don't have to be on my toes 24/7 making sure she hasn't found a new and inventive way to get into trouble.

I mean, even when people say "it's okay, we have kids, there's nothing she can break!" I'm like... "Um... you really haven't seen her in action... She can pretty much scale anything... She can snap metal in two...":
Besides.  I'm kind of a homebody.
4. What is your favorite kind of candy?

Anything chocolate.  Does chocolate count as candy?  Let's go with yes.

And that's why having basically all chocolate banned for the past year because of Patrick's allergies (and the fact that he was nursing) just about did me in.  I have definitely been enjoying having it again since he's been weaned.

But it is the one thing that makes me a little sad about our Easter Baskets.  Two out of three kids can't eat 99% of the chocolate that's out there.  I do have a chocolate bunny hidden for Sadie that I'm going to bring out tonight once they go to bed though!

5. Do you like video games?

Nope.  I knew too many people in high school and college that were complete consumed by them and pretty much stayed inside playing them all the time... and that made me not a fan... 

6. Do you speak another language?

Fluently?  No.  

I'd be okay though if I were scooped up and dumped in quite a few places.

I've taken college classes in Japanese (3 semesters) and isiXhosa (when I was at University of Cape Town and French and Spanish and German and I learned quite a bit of Mandarin (and a tiny bit of Cantonese) through my friends and employers in college (I'd probably say that when I was using them every day I knew more Spanish and Mandarin than any of the others), but after hardly using anything other than Mae's Spanish for the past half decade I'm pretty rusty.  

Although if Mae keeps on insisting that Spanish is her favorite way of communicating I guess I'll have to start picking it up again!

I'm kind of a language junky.  I can't wait until we start working on a second language in our little school.  

Now to get back to the little ruffians.  Mae was so exhausted from all the egg hunting and running around that she's fallen asleep on the living room floor and Patch and Sadie have been watching frozen for the 1,547th time (parenting fail:  When the priest said: "He is Risen."  Sadie responded with: "He is Frozen indeed." because she has Frozen on the brain.)

I hope you had a fantastic first day of Easter!