10 Things I Wish Other Parents Knew About Autism

The last few days of Autism Awareness / Acceptance Month are dwindling down and my mind has been churning this post ever since I read 10 Things I Wish Your Kids Knew About Autism on Babble at the beginning of April.  More often that not, it isn't the children that have trouble accepting my Autism, it's their parents.  Specifically, they have trouble accepting us and the way that we raise our child.  What I wish there was more of is an understanding of how Autism has changed our life; how it has made us different.  There is a lot of judgement about what I'm doing/not doing/could be doing to make things easier/better/make Autism disappear.  I know that there is a lot of controversy, even within the families affected, about these topics.  So based solely on our experience, here is my list:

1.  I was a great parent before I had kids.
I used to see moms out with their kids and I swore that I would never do what they were doing or MY kid wouldn't be like that.  Being a new parent really opens your eyes to how cocky and judgmental you were of others.  But I feel like parents of neurotypical (NT) kids still hold on to that attitude when they see another parent struggling.  Maybe it helps them feel better about themselves.  But I promise you, I was right where you were before I ended up in another world. 

2.  Having a kid with Autism IS like living in another world. 
We heard a great analogy from one of M's first teachers that helped us navigate her diagnosis.  As expecting parents, you plan extensively for the way you will raise your child and what you will do with them, traditions you will carry on, etc.  Planning a trip to another country takes a lot of forethought and care because you need to be know what to do when you get there, where to go, and how to speak the language.  Imagine you have spent 9 months planning your trip.  The day you get on the plane you are so excited you can hardly stand it.  Eiffel Tower, crepes, The Louvre - you are pumped.  Except that when you get off the plane, you realize you are in Holland.  Holland is amazing and beautiful but you have no idea where you are, you don't know the language, and there isn't a map in sight.  You feel alone.  We thought we knew what to expect because we were planning on having a NT child.  All of my years of babysitting and being a camp counselor did not prepare me for raising a child with Asperger's.

3. Don't try to one-up me when it comes to meltdowns.
I used to try and explain what I was dealing with to other parents with NT kids. But I got frustrated hearing how their kids threw fits too, so they got it.  Try multiplying your kid's tantrum by 100.  Yes, all kids have meltdowns, but kids with an Autism Spectrum Disorder have meltdowns that are much more intense.  Everything is magnified.  Sensory stimulation is overwhelming.  And sometimes I don't even know what's causing it.  And they aren't doing it to get a reaction, or because they aren't disciplined by their parents.  My daughter describes it as a physical pain that she can't get away from.  Because of her bluntness, she is always honest about why she does something on purpose, like disobeying.  But there is never an explanation for a meltdown.  It just exists.

4.  I DO discipline my kid.
I know from your view it looks like I give her everything that she wants based on the way that she is screaming and acting 2 or 3 years younger than her age.  I can't always control what sets her off.  I do my best to limit overstimulation or keep her routine the same, but it is NOT from lack of limits or consequences.  She has consequences all the time.  Her impulse control is limited, however, so she doesn't always remember what they are when the noise in the room is so loud that her skin is crawling.  And I can't punish her for screaming when that is what makes her body feel better and that is her way of self-soothing in the moment.

5.  Every child with Autism is different.
That means what helps each of them will also be different.  A change in diet will not help every child.  This comment will probably bother a lot of parents with kids on the spectrum.  I have a lot of friends whose ASD kids are gluten-free, dairy-free, casein-free, sugar-free, etc.  It works for them.  It might work for us.  Right now I am too overwhelmed to go there.  I am doing what I can, when I can.  I read a study once in the Journal of the American Medical Association about a dad who secretly reintroduced gluten into his child's diet for 2 straight weeks and there was no change.  But I also have a friend whose daughter began to talk more after removing all the things above from her diet and there are many more stories like hers.  I'm not a physician.  I'm a mom who is just trying to survive with little support from outside sources.  Maybe we'll go there someday too.  Right now I'm just going with what is working so far and when I feel like I can come up for air, I'll reach out to someone who can show me the way.  And just like normal parenting, if there was one book or one way that worked for all kids, that author would be filthy rich.  But there isn't.  Damn, I wish there were.  For all of us.

6.  We are exhausted most of the time. 
I used to be fun.  I used to have energy.  My husband and I just got back today from almost 48-hours away from our kids.  It was only the second time in 8 years. The last time was 5 years ago for my birthday and we fought the whole time because we were under so much stress, so not really a restful break.  It's hard to find people who you can trust that will be able to handle the meltdowns and the constant need for interaction like our daughter has.  And we have to find someone that she is comfortable with too because change and the unfamiliar are very hard for her to deal with.  We had a great time this weekend.  We had time to rest.  But we've only been back a few hours and I'm already super-stressed out again.  I know you are thinking that you understand, but no.  You really can't.

7.  We need to escape once in awhile.
For me, work is my daily escape.  I know that some people think we need to spend 100% of our day devoted to finding a cure or planning new strategies for how to control behaviors.  Let me tell you, I did that for 3 straight years and I nearly lost my mind.  Going back to work was my saving grace.  Work is still hard some days, but it's a chance to get away from what we deal with day in and day out at home.  I am happier, so my home is  happier.  Yes, I miss school activities and picking them up right after school.  But for us, this set-up works much better than the alternative.  We've been there.  Done that.  It wasn't right for our family.  If you're ever wondered how you can help a family affected by Autism, offer to have their kid over for an hour to play.  Even half an hour.  Time to breathe is priceless. 

8.  Life with Autism is lonely.
The only thing better to having our kids over to play is having us over to hang out.  We feel like we don't belong most of the time.  There aren't a lot of parents that we can relate to. But that doesn't mean that we don't want you to try.  I had to make choices very early on about who I would hang out with that didn't make me feel bad and didn't treat me like I was doing everything wrong.  I miss those friends.  I see them on Facebook and we send Christmas cards back and forth.  But our kids don't play together like I thought they would.  Like we said they would when we were dreaming up our families in our heads.  There is loss and grief involved in living with Autism that lasts longer than right after the initial diagnosis.    

9.  High-functioning doesn't mean that it's easier.
High-functioning just means that my daughter is able to perform well academically and might have a better chance of  holding a job and living on her own someday.  She is well groomed because I help her with that.  She is verbal.  Her stims aren't as obvious.  But a change in schedule will throw off her whole day and her meltdowns and reactions can be just as severe as someone who is considered low-functioning.  It's just more surprising when you see her rocking on the ground crying because 5-minutes earlier she was in her reading group that's a few grade levels above where she should be.  The contrast is painful, I know.  Her social age is greatly behind her academic age.  Two weeks ago after one of the worst meltdowns she's had at school yet, I ran into another mom and actually admitted to her that I sometimes wished that my daughter had more classic autism symptoms, like her non-verbal son, so that people would stare less or maybe just understand more while they are staring.  A pretty low point for me but thankfully this mom got where I was coming from.  She knows the truth.  See #9.

10.  We wouldn't change our daughter if we could.
Yes, there are things that we would give up in a heartbeat.  The meltdowns, not being able to get through to her when she's experiencing an episode of sensory overload, or the disconnect of emotion when emotion is definitely needed.  But some of the most amazing things about her are because of her Autism.  We are in awe of the way she sees the world and how her mind processes things.  She is loving and affectionate.  Her artistic ability is impressive. She loves intensely.  She is brutally honest about the way she feels so when she says she loves us it's one of the greatest feelings in the world to her father and I.  We have faith that she will do something great with her life.  Her heart is so big, I don't see how she can't.  In what role or capacity, we have no idea.  But we will be proud of her, no matter what.

Camping, Take 2

The last time we went camping, we had brought the pack n' play for our 1 year-old thinking it would help her sleep, yet she still cried all night long.  Momma was not lovin' it.  It was just another thing that I loved before children and then hated with a passion after.  But because I value my husband and his Eagle Scout desires I acquiesced to going again this June, 4 years later.  We only survived one night the last time around because I didn't want to see what the other campground tenants would do to us if JJ had a repeat performance the following evening we were scheduled to stay.  When Jeff suggested we stay 3 days this time, I thought he was nuts but I obliged.  I was super stressed out the week leading up to our glamorous Summer 2012 vacation (sadly, no Disneyworld this year).  M helped plan all the meals and I did all the grocery shopping.  Jeff was responsible for all the gear. 

We arrived at the campsite and Jeff & the girls pitched the tent. 

By the time they were finished, it was dark outside.  The meal plan called for soup, so I was making dinner.  Next year I'll make sure and double check all the gear and supplies before we leave because it is not fun making soup on a camp stove with no large spoon or ladle and only a plastic utensil.  But the dry soup that M was SO excited about when she first saw it at the Alpine Shop turned out to be pretty decent.  While we were eating, we had our first two encounters with nature (of 15 that we counted on the way home).  First, a skunk walked only a mere few feet away from our table and a raccoon was close behind.  If we had gotten sprayed, I would have jumped in the river and then proceeded to pack everything up.  We saw him again the next day and thankfully he spared us again.  JJ lasted the whole night with no tears.  There was a baby at the next campsite and we thought that it was going to be an evening of bad karma but she only cried for about 30 minutes. 

The next morning, the girls were up early and ready to go wading in the river.  I made breakfast - one of my favorite things about camping is the cooking - and was again thankful for a propane camp stove.  But after eyeing all the other campsites, I think we need to upgrade some of our gear for the next trip. 

We had only been in the river for a few minutes when J spotted an "eel".  I don't remember there being any water moccasins in The Little Mermaid, but I see where she could have gotten confused.  Jeff picked up a rock and killed the snake giving the girls raw exposure to the perils of the wild.  It turned out to be a harmless water snake, but I guess he didn't want to take any chances.  Later, we saw a sign that frowned upon killing snakes in the state park but he was just protecting his offspring.  And he HATES snakes.  It belongs right up there with things Jeff hates the most in this world, next to Indigo Girls music and Facebook.  Speaking of Indigo Girls, I would have loved to go their concert this past week, but it would have been a no-win situation for me.  Some crazy girl gave Jeff a CD once that was chock-full of I.G. songs - not knowing that he couldn't stand them - and it just made him hate them more.  And knowing that kind of ruins it for me, even though I loved listening to them in my angst-filled high school days and on road trips in college.  Convincing him to shell out the cash and let me drive to Columbia for the night would have been a hard sell.  I'm still holding out hope for the Jason Mraz concert in September, because he likes his music and it's in St. Louis.  :)  But I digress.

Playing in the water with my girls was all kinds of fun.  We looked for friendship rocks (rocks with holes all the way through that you string on leather necklaces and give to friends.  Anyone who went to Kanakuk knows what I'm talking about), skipped rocks and caught frogs.  JJ accidentally killed "Kermie" M's new best friend of an entire 10 minutes.  She cried for at least 3 times that long when we let him go and then JJ squeezed the life out of him giving him one last "hug".  At least neither of them saw him float away so they think he'll be there when we come back next year.  There was a great swimming area that we went to the next day and they caught crawdad "families".  Parting with them was also sweet sorrow because M grew so attached.  The girl loves her nature. 

I remember hunting for crawdads in the creek when I was growing up so it was great to see my girls enjoying something that I did as a kid.  It was surprising that my girly-girl JJ had no fear and was keeping up with M like a champ.  I'm thankful that she's not afraid to get dirty because she's usually our little diva.

The rest of the time the girls rode bikes, rescued a baby bird that fell from a tree (that also later died but they think the momma bird saved him), and visited the nature center.  On the way home, we asked JJ what she liked best about camping and she said "everything".  I'm glad that we made the trip and I'm already looking forward to next year.  Jeff did a great job planning it and picked a perfect spot, Sam A. Baker State Park.  The scenery was peaceful and the river was a hit.  And to those judging me for letting my girls wear skimpy swimsuits because I know you're out there:  I'm usually opposed to my girls wearing two-pieces, but that's all I could find at Goodwill and I just hoped that there were no perverts around. 

I'm also glad we went the second weekend in June and not now because we're experiencing record heat in the Midwest.  Jeff ultimately lived up to his rank and suggested the earlier date because he knew it was going to be a lot hotter later in the Summer.  It's true - I married him because he was a Senior Patrol Leader.  And in Order of the Arrow.  Whatever that means in Boy Scouts.  He also planned a baseball game for that Sunday making for the Ultimate Family Weekend.  Our seats were ridiculously high, but we never stay in our seats that long when we're with the ladies.  After the game, the girls were able to run the bases which was pretty cool to watch.  I only wish that the Cards had won the game. 

This little girl was exhausted:

But that didn't stop her from wanting to play at Citygarden on the way back to the car.  We had never been before and they absolutely loved it.  I wasn't prepared so we didn't have a change of dry clothes in the car, but since I'm a semi-decent mom I DID have two pairs of their clean underwear stashed in the glove compartment so we dried them off as best we could.  I honestly think they had more fun than they would have with swimsuits on.  There's something awesome about getting soaking wet with clothes on when you're a kid.  Or even as an adult.  I played in the rain one day with some of my best friends in college and it's one of my happiest memories.

They also have sculptures at Citygarden which the art history minor in me just loves. 

M was mesmerized by this piece of artwork:

I think it's safe to say that they had a pretty incredible weekend.  At least I have proof for that day when they tell me that they never did anything fun when they were little. 

And for those few people who actually read this blog and keep checking to see when in the world I will ever blog again, you have my friend Tara to thank for this post because she reminded me today that there are in fact those few. 

 

Let me pencil you in

For my friends who have been at the mercy of my spontaneous tears for the last week, I did you a favor today:  I scheduled time to cry.  I had to enlist the aid of a catalyst: the movie The Descendants.  Now, Jeff might be upset when he reads this because he might have wanted me to wait to watch it with him, but I knew this was one I needed to watch alone.  And I knew I needed to cry. Recently, I've found myself crying in church with no end in sight, wiping snot on my sleeves for lack of Kleenex.  I went to Bible study last night and just the sight of my good friends brought it up again.  I'm usually good at holding it in - I've done it for years.  I've pent up lots of tears over things that I'm really sad about. And instead I've been angry.  I've made jokes at my expense to hide what's really underneath.  I've been abusive towards myself in the form of lack of care.  I've avoided deep moments with those that I love because it just hurts too much to feel.  I've also been cussing a lot lately because I need release.  Judge me if you will, but lately those words are the only ones fitting. 

I cried most of the movie.  And afterwards.  I related with many characters: the hurt spouse who feels inadequate to raise his children alone, the daughter who feels neglected so she acts out, the scorned wife at the end yelling at George Clooney's wife that she forgives her - through gritted teeth.  Actually, I indentified with most of the characters.  Even the comatose wife, who at the end I wept for too, despite being disgusted with her for most of the movie.  She was hurt too, her heart broken and disappointed and let down by those she misplaced her trust in.  This movie was the perfect storm for an onslaught of weeping that has now resulted in what Jeff calls my "golf ball eyes".  I wasn't kidding when I say I blocked out my afternoon to bawl.  It was calculated and definitely efficient.  Unfortunately, I think I need a week of Cry Time.  And lots more emotion-provoking movies to get it out of me.  I've been saving it up for oh so long. 

Blogging, redirected.

I was going to write a post on deep thoughts provoked by Jen Hatmaker's posts on Easter, but that was before I stepped in dog crap this morning.  Now those thoughts are gone and replaced by negative thoughts and feelings.  I have yet to go outside and spray said dog crap off my cute deck shoes because I need to work up the desire to meet with fecal matter once again today.  The frustrating points of stepping in dog crap today were:
1. We don't own a dog and neither do our neighbors so where the hell did the dog crap come from?
2. I ran all the way to school behind M's bike and didn't notice I had stepped in dog crap.
3. I ran all the way home and got in the van to go to the chiropractor and didn't notice I had stepped in dog crap.
4. I laid down on the adjustment table and didn't notice I had stepped in dog crap.
5. I smeared dog crap all over my other shoe, my jeans, the adjustment table and STILL didn't notice that I had stepped in dog crap until Dr. Bob came in and let me know that there was DOG CRAP all over the place. 

So I walked out of Dr. Bob's barefoot like a cast member of an Appalachian Emergency Room skit on SNL and headed back home. 

*If you look closely, you can see a pretty unique-looking squashed caterpillar on the bottom of my crap-filled shoe.  I'm sure this is God's humorous way of reminding me that there is beauty amidst the mess.

Bennett's Brigade

I know that I get frustrated sometimes by the struggles I endure with my girls, but this video by my friend Breck puts it all in perspective.  We may be fighting to put shoes on in the morning (Miss M) or to wear pants (JJ), but we are not fighting for their lives.  Breck is my KD pledge daughter and I am very proud to be able to call her my sister.  I know that sounds mixed up, but anyone who was Greek in college knows what I'm talking about.  Please watch the video and be support Breck and her family through prayer or other means if you feel led to do so.  Or just a post of encouragement I'm sure would do wonders. 

"So tell me a little bit about yourself..."

I hate this question.  Usually, hours after I'm asked, I come up with something like this:

I like to travel.
I hate Gorgonzola and blue cheeses.
I only like cilantro in salsas.
I have a wicked spider bite scar/story.
I strongly dislike horror movies, but I love a good suspense/thriller.
I have no desire to bungee jump.
I have been spelunking and rappelling a few times.
I love to camp.
I can kayak. 
I am a former beauty pageant contestant, but only as a runner-up, although I did win Ms. Congeniality.
When it comes to sushi, I only eat California rolls because I don't like raw fish.
I play the violin, but not very well.
I like to run, even though today I'm having a hard time getting motivated - hence the blogging.
I have a strong aversion to people who lie.
I can't keep a secret from my husband.
My best friends are like my family.
I worked in a large animal vet clinic once. 
Parenthood is my favorite TV show. 
I have two little girls. 
They are not at all who I expected - they are even better than that.
I'm from Columbia, Missouri and went to Mizzou.
I was an English major, Art History minor.
I played club soccer - wasn't good enough for Varsity but I love the game.
I've had my heart broken a few times.
Not just for reasons of love, but also by life.
It's made me stronger. (cue Kelly Clarkson or Kayne West song)
In another life, I would be an interior decorator.  Or a nurse.
I read the Twilight and Hunger Games series, but not Harry Potter.
I didn't go to my first high school reunion.  Not sure about the second. 
17 years ago I would have pegged myself as someone who would.
I'm glad I'm not the same person I was 17 years ago. 

Borders' Loss, My Gain

A few weeks back when Borders was having their liquidation sale, I bought several books I didn't really need, but I also snagged a huge bulletin board for $10.  The same size at The Container Store was $70 and this one was in great condition and needed just some paint and fabric (it's Dwell Studio and unfortunately at $16/yard was more expensive than the actual bulletin board, but I fell in love with it).  This morning I finished it - and it looks great!  I can't wait for Jeff to hang it up in the girls' room.  Yes, I have a fear of hanging things on plaster walls so I need my husband to do it for me.  I'm excited to see the cute things that M & JJ want to put up.