Undressed: The Fashion of Privacy | The Art Institute of Chicago

Undressed: The Fashion of Privacy | The Art Institute of Chicago

Interesting looking exhibition, no pun intended. :)

Surf's Up | Rundown | Las Vegas

New Wet & Wild water park in Vegas.  Have been to the one in Florida...

Surf's Up | Rundown | Las Vegas

Marriage and Special Needs

Very interesting discussion on FB today regarding a painful topic. 

 

On one of our support group pages, a mother wrote for advice.  She asked if anyone who was married or had a partner still felt like they were dealing with “this” alone.  She felt like she was doing all the tough work – behavior, meetings, appointments, night waking, etc.  Yes, it’s hard when the father is like one of the children.  The response was overwhelming.  I was not surprised.

 

I read in one Jenny McCarthy’s books about a group conversation she had with a bunch of autism moms.  She asked them if they could afford it, would they stay married.  Most of them said no.

 

Personally, I would stay in my marriage, but “this” definitely is a big challenge to a relationship.  We’re in a really good place now, but there has been a lot of stress on the journey.  We adapt, and although it takes time, we work through it.  I am not surprised a lot of couples don’t make it – and I make that statement with love and no judgment.  It’s hard!

 

Many women on the FB site complained about never getting a break – which is so valid.  Their men get nights out, weekends away; so commonly the women do not.  We all need sanity time. 

 

I thank God for theatre.  I really think that makes a big difference for us.  It’s something we can do that’s not all about autism.  It helps us retain a piece of ourselves, who we are, who we were before “this” became the focus of our lives.  Now one of our sons has joined us, becoming a theatre person.  He loves being on stage and loves seeing us on stage.  The arts are wonderful for kids on the spectrum and I am so grateful we are able to bring theatre into his life.

 

I have met many single moms at my kids’ school.  I don’t want to generalize men.  Lots of fathers step up and do their share.  There’s also a lot of guys who just can’t handle it.  It can be said that women are naturally better at nurturing and have more patience.  That’s a generalization too.  I have also met more than a few special needs grandparents raising the child because both the mom and dad couldn’t handle it. 

 

One of the dads spoke up on the FB site stating guys are not suited for nursing and that they are generally raised to only protect and provide for their family.  This sparked quite a lot of comments from the moms.  This concept gets complicated when you consider all the mothers that work yet still play the nurturing domestic role.  That’s a lot to have on your plate, and it’s something all working women deal with, not just special needs.

 

This is a painful topic that I almost didn’t write about for that reason.  Special needs is a journey for the whole family.  We have to remember to breathe, not judge each other, and take it all one day at a time.  That may sound trite, but some days, it's all I can do.

 

 

Open Letter by John Gilbert

I love this post, shared on several autism Facebook pages - not meant to guilt, just to give others a window into our lives...

The other day that mom with the little boy who was making so much commotion in the fast food restaurant noticed you staring at her. He was a handful, wasn't he? His screaming was incessant and the way he was challenging his mother: unacceptable. It's understandable that you would never allow your own child to holler at you like that, or bounce between the booths. You found yourself wondering what would possess her to bring an unruly child like that out into public in the first place. As your respectful children stood beside you in silence, you wondered when he would just be quiet. And you wondered what kind of mother she must be.

If you only knew what that mom wonders.

She wonders what she can do to get him to stop screaming. Sometimes it lasts all day, and lately, it's been almost every day. Then, while you put your kids back in the car, she wonders if he'll keep his seat belt on for the entire ride. You will get them home and they'll head right upstairs to play together nicely. She wonders if he'll decide it's time to begin switching the lights on and off repeatedly, or throw to everything that's on the desk onto to the floor.

When your kids fall down, you can ask them where it hurts and they can tell you. It hurts the other mom that all she can do is hold her little boy and wonder when he'll stop crying. Later, while you wonder what story you will read to your child tonight, the mom you know nothing about will once again cry herself to sleep in her husband's arms.

You wonder later why God would give any child to "that kind" of parent, yet she's thankful that God chose her. You judge the stranger based on that one incident, while she wonders why you didn't just ask if you could help. She probably wouldn't have taken it, but she would have appreciated the gesture.

Your four-year-old has mastered the art of conversation. She find's it triumphant that her son mumbles, "go school" and "want eat." You already wonder what your child's high school prom will be like. Meanwhile the other mom wonders when her four-year-old will potty train.

You wonder who your little one will marry some day, while the mom with the rambunctious son worries that he may not graduate from high school. You plan to send your child to the best university, and the lady that you never met wonders if she'll have to care for hers as an adult.

While she's not jealous that your kids obey, talk and dream, she does wonder what it would be like to be able to call her son "normal." He is who he is. There's no altering that, and his mother wouldn't change him for the world. But feeling your eyes burn through her melts her soul. She does the best he can, and wonders why you judge them both.

She doesn't ask for your sympathy, just your understanding. Her family puts a lot of time and effort into helping him become the best somebody he can be. You don't see it, but that's all right, because his mom sees it every day. She sees the victories as well as the defeats.

You cast your judgment based on the one day you saw the unruly child in public. No one faults you for that, because the other mom used to do the same thing, back before her son's diagnosis. All the mom asks of you today is compassion and consideration.

Tonight, when you tuck your kids into bed, be thankful for the children you have and for who they are. Understand that, while you are getting butterfly kisses from your little angel, there are parents wondering when theirs will be able to say the words, "I love you."

Dells again!

 

 

Weekend in the Dells, starting tomorrow!  This time we are staying at Great Wolf Lodge.  They had the best deal for a family our size (6 adults, 3 kids).  Renting a condo again.  We rented a condo at Chula Vista for Thanksgiving weekend, which worked out very well.  Great Wolf has both indoor and outdoor water activities and theme park rides.  Sean was so excited he could not fall asleep for hours! He finally nodded off, giving me some solace to type. 

Things we will try to squeeze in: breakfast at Paul Bunyan, a Dells staple; ziplining, which I’ve never done before; maybe a Duck Boat ride?  Last time we rode the Ducks, the kids were terrified.  Maybe now that they’re a little older…the views are so beautiful.  My favorite rock formation on the Duck tour is the one that looks like a piano that fell off a cliff.  (http://www.vintagewisconsindells.com/wp-content/uploads/2012/11/baby-grand-piano-lower-dells-wisconsin-river.jpg)

I also would like to revisit Buffalo Phil’s – last time we were there, waited much longer than most autistic kids (kids for that matter) can handle, but the counter seats with a full view of the little train delivering food – worth it. 

Outlet mall shopping perhaps?  Who knows.  Right now just hoping the kids can stay amused for the four hour drive…

 

 

Facebook pages - observations.

I have joined various Facebook pages relative to autism parents/families/caregivers.  It’s a great resource for networking, getting ideas, helping others, even if that help is just a sympathetic ear of someone who’s been through the same thing.

There’s an interesting phenomenon that occurs all across Facebook.  We’ve all seen it.  It’s most common around election times.  Someone makes a comment or a statement and it erupts into this massive debate between friends, friends of friends who don’t know each other and these debates sometimes get ridiculously ugly.  It’s interesting the things people will say in print that they would never say to someone’s face.  Communicating with a keyboard can bring out strange things in people.  Some subtle nuance, whether intended or not, hits a nerve in someone and the fireworks begin.  I have also seen these debates erupt over seemingly innocuous topics such as waitressing.  I have unintentionally set off fireworks with a seemingly innocuous topic.  This is not a judgment of anyone who gets caught up in these debates, it’s just an interesting phenomenon that they happen. 

 

I have also seen this happen on FB pages I frequent for funny and/or inspirational quotes and pictures.   Something someone says or implies just blows up into something. 

 

I’m sad to see this happen sometimes on our autism support sites.  I saw one happen yesterday over safety harnesses, also known as kid leashes.  In general, it's a controversial topic. (Anyone see the "Modern Family" episode where this was addressed?  Hilarious!) One person made the old “why can’t you just control your child” statement, which is a sore spot for us special needs parents, then was surprised, “why is everyone being mean to me, I’m entitled to my opinion,” etc.  As special needs parents, we know better than most that every child is different and we need to support each other – certainly not judge each other.

 

I have befriended fellow autism parents, as well as adults and young people with autism through these pages.  The young people are especially fascinating to me – part of them is still a child, which I completely relate to given I have two kids on the spectrum.  It gives me a window of perspective into the future as far as my kids are concerned.