So you think you can dance??

Doctors orders were for me to "dance" with my children.  As a result of my 4 pregnancies (two of which I had the lovely condition I call GD - Gestational Diabetes), and my 60+ lb weight gain (thank you genetics), I am a pre-diabetic and need to get those nasty blood sugars under control.  Knowing I have 3 small children underfoot all day...and that they have the "A" word (Autism:) for my new readers), she suggested I "dance" with them.  "Ya know, just turn on some fun dance tunes and dance in the living room.  Everyone likes to dance and it will be good exercise and fun with the kids".

In actuality, this is how it went.

"Mommy is going to turn off Wubbzy since you've watched it half the morning, and we are going to dance," I said as I tripped over the carpet that had previously been rolled up in a bunch under the cupboard where the stereo sits.  "I want Wubbzy!!" chanting from the hallway.  I reached down to pry the broken cupboard open as it swung from one ragged hinge - the other hinge busted away from a shredded and gnarled piece of splintered wood.  The first radio station I come to is finishing a boring song so I close the door and wait a few seconds for the next to start.  Then some crazy-rap-90's-hip-hop-booming song starts playing and I try and roll with it...getting all dub-step and gangster...until I realized the kids are all screaming and asking for drinks and covering their ears.  So, I switch the station.  Nothing much better on the next go but I try dancing anyway.

Now the kids are into it but they only want to do "ring around the rosy"...and now they are mad because I'm not spinning them and they are fighting for my attention.  Next wonderful thing...Aidan wants chocolate-milk all of a sudden and starts climbing the gate.  "Come on, lets dance", I yell enthusiastically as I start my 40 something groove... "No...I want milk..."  Girls are now screaming and asking for different things...Kylie wants to spin...Kaelynn wants to run in circles...nobody wants to hold hands and now Aidan is on the floor squealing.  At this point, the song is actually irritating and I'm cheerfully saying "lets dance...it's fun...right??"  Now I'm dancing alone.  Everyone is either crying or upset...or wanting milk.  Well doctor...easier said than done.

**Shaking my head**  I will never get this figured out will I?

Finding compassion in places you never want to go...

There is no structure to this post...just a venting session.  Read at your own risk.

Recently on social media, I was made to feel that sharing my pain was just a burden to others and that they didn't really want to hear my "pain" or "hardship".  How can I put this?  Sorry if reality is too hard for others but I sort of can't avoid my reality!!  But, for the sake of saving friendships I decided to blog about my experiences instead.  Whoever wants to read can...and the others can ignore them.  Doesn't matter to me!

Here goes my blog...

I could hear the laughter of my children flowing down the hallway as my husband was being "monster Daddy".  I should have felt a sweet lightness in my heart and possibly a tear should've appeared in my eye to live in that rare moment.  I should've felt something wonderful.  Instead, my body was holding up a countertop as I drearily stared into the room that used to have a dining table but is now a mix-match of loose toys, some broken, most orphaned and lonely but all sitting atop a dingy rug with holes.  Oh, the unsettled living area is not why I stared off into space, nor was it the mess that was calling my name to clean it up.  No, my glossy eyes and numb emotions go deeper than that.  I believe its a protection that happens to mothers like me.  But is it really protection?  Why can't I enjoy the laughter coming from the next room? A thought like that can make the tension worse, can make the reality worse.  I can't enjoy much to be honest.  Most of my day is spent under attack and as a 24hr surveillance team of one.  My adrenal glands are working overtime!

What I'm going through now is nothing new to what I've been facing for the last 5+ years.   3 kids with ASD.  Why am I saying it again?  Well, because I have to keep reminding myself that this is why life is so unbearable and sad most of the time.  I read an article that said roughly, "mothers of special needs kids have the same symptoms as soldiers suffering from PTSD".  I will never try and take the credit of something so honorable as a soldier, so please don't misunderstand.  I'm just drawing the association that most times I feel like a surge of anxiety, fear, sadness, visions of danger, grieving, anger and total brain meltdown flow through me multiple times a day.  I know other mothers that share the same emotional roller-coaster and we all agree, it makes us less available to take care of our very needy kids.  We are stripped of our decision making process because we always have to factor in the inevitable, crazy and absurd!!  I blog about these emotions because I can't understand them.  I raised a child already, with the same list of rules that you raise your kids.  You teach them to obey and how to be polite.  Stay where Mommy and Daddy told you to or we won't go "______" (fill in the blank).  Be nice to your sister or no "______" (fill in the blank).  Life had conditions and consequences.  Sure, kids disobey and don't follow the rules.  But as time goes on they start to learn and start obeying more and more frequently.  So why is this so hard for our kids to do???

I want to cry as I type this because this scenario isn't at all what is going on in our ASD home and it's like a foreign land.  There is no "obeying or following directions" and no teaching "respect" (no matter how hard we try), there is no "if you do this, then you can have this"....again, we try...but we are ignored. How do we carry on like this day to day for YEARS??? I'm baffled.  There is no answer.  Yet we still try and in the meanwhile I feel like a complete train wreck.  My back feels broken.  My feet feel broken.  My heart feels broken.  If my husband were writing he would say the same about himself.  So here we are 2 people leaning on each other to get through a lifetime of uncertainty. Wow.  Marital bliss.

 

I hear others moms talking about their struggles.  How to juggle ballet with soccer practice?  How can they get home in time to fix dinner?  I am not trying to dismiss that other people have stress.  I am just looking for some common ground in my new life.  I wish I worried about things that other people worried about so I could relate.  I have to think about the strangest most random things regarding our kids and it is exhausting!  For example: when we are trying make a decision about family vacation, we can't simply pick a place, save the money, buy our tickets and travel clothes etc.  We literally have to think about: how can our kids cope, will they throw up, will they escape the location, what could happen if they did, will they get over the noise, will the crowds be too much, can they wait in line, what if they hit or punch someone there, will they stay in a stroller, can my body handle the constant lifting or fight when they have a melt down, do we need to bring an extra person, will it be a waste of money, will they sleep at night, can they get out of the hotel room, is there a balcony, can they lock themselves in the bathroom, will they eat the food, will they sit in a dining room, can we manage diaper changes on kids too big for the diaper changing station, how will other people treat us??

Just plain planning becomes daunting.  Most of the time we give up.  We stop planning.  Yes, we do have successful outings but it is NEVER leisurely.  It is constant running and struggling.  I am not kidding.  We recently took a 2 week family "staycation" and did have successful trips to local amusement parks, the beach, the fair etc.  Again I have to say, the craziness has become our new reality.  We felt it was successful because we "survived" and we had a few laughs.  Others might observe and say, "what an absolute nightmare, I would never do that!".  Funny how your perspective changes.  We see every outing as an opportunity for them to succeed in a social or community setting.  When they succeed it builds their confidence.  The only way for them to feel success is if we make it back to the car without any major meltdowns and very little yelling...and it order to do that we have to limit the length of time we are out.  We've got it down to a science!

A few months ago, our friend and pastor at our church gave us this book.  The author is a Japanese boy with autism that is non-verbal but able to communicate with an alphabet system and eventually was able to answer questions about how it feels to have Autism.  It was earth-shattering stuff for us to read because we were able to finally hear our children's voices.  Not to say they don't talk or communicate because they do...but this book talks about feelings.  We don't get to hear how our children feel...but this book helps us do that.  We realized very quickly that they are trapped in a mind that does what it doesn't want to do, that acts on impulse (no matter the consequence) and they wish they could control themselves but they can't.  It gives me a compassion towards my children when they are lashing out and bashing things in their anger.  I feel their pain.  But I'm also their mother and I want to guide and direct but it looks so different than the methods I had used with my older son.  This compassion has come from a place I didn't want to go...I couldn't have gained it if I never traveled down this road called Autism.

As I wrap this up, I have 2 therapists in the other room working with my older daughter and I suddenly hear screaming so I come to see what had happened and the youngest had bit her really hard in the chest (over a toy).  I gave kisses to the older, a little swat on the younger and made her say sorry.  I keep hearing this will get better.  I can only hope.

We don't need a break FROM our children with Autism, we need a break WITH our children with Autism.

I'm a little hesitant to write this post as I'm aware that any opinion on parenting styles varies so much from family to family and even situations within the same topic can reflect very different realities.  I will be using generalization about raising Autistic kids, so please bare that in mind as you read.


Going against popular belief and the multiple comments I get from loved ones and even strangers, I proclaim with fervor, "We don't NEED a break from our children".  When I've spent an afternoon complaining to a friend about the "goings on" in our household, I can see why their conclusion is, "you need a break from the kids" or "do you have respite care, so you can get away?".  At the risk of sounding double-minded, YES we need those kinds of breaks too but that is not the primary resolution to our troubled minds.  If you have the time and the heart to follow along, let me take you on a journey into the deeper life of a family that has Autism in the center of their world.


If you have children of your own, then you know that they are the center of your universe (besides the obvious disclaimer that God is actually the center and your spouse is your life partner, so lets establish that right away).  That aside, your own children are who you live for, what you work for, who you would die for...you get the point.  When life throws a situation of physical or psychological disability your way, that doesn't change your strong animal instinct to protect and nurture your child and to give them the best life possible.  However, society limits your ability because of their capacity to understand and your own child may limit your chances of succeeding in the quality of life you wish to achieve.  In the end, you don't go anywhere and the thought of exposing your family and heart to ridicule in a community outing becomes daunting at best.  I have been there.  I know.  I have crumbled in total silence in front of strangers that could offer nothing but a cold stare.  All the pain of my children's screams echoing in my heart because its not just my privacy and my ego that is on display but their undeserved anxiety and internal torment.  Do I sound melodramatic?  If I do, you need erase your preconceived and discriminatory mindset and really listen to what I'm saying.


Despite popular belief that these children don't actually understand that they are different, and that they don't care about the trouble they are causing, or because they are spinning in a corner, they don't want to be with people or have friends, I say the opposite is true.  They DO know they are different.  They DO know they are drawing attention when they scream.  They DO want friends.  It is when their compulsive actions happen that they lose the ability to do what is right and therefore causing social discomfort resulting in withdrawal and outbursts.  And the saddest part is, they know it...and they sense other people are equally aware.  They have normal, if not high, IQ's and they have over developed senses so they can hear, see and observe more intensely than we can possibly imagine.


Now apply this new thought process to how a child interacts with the people in their family.  Parents, siblings, Grandparents take on a new role of companion and friendship.  Relationships outside of this sphere are difficult if not impossible.  These are the relationships that will strive to understand their minds and will cheer them on with all accomplishment's or failures great and small.  These people will read books about Autism.  They will talk to other families with Autism in order to gain greater understanding.  They will advocate for their children in business and personal settings.  These people will fight for their children's happiness and will protect them at all cost.  In their life, there may not be anyone else to lean on in the future.  They are at risk for abuse, neglect, isolation, despair and being shut out from society.  I can see that many of these young ones have the potential to grow up and never overcome the behavior issues and the violent tendencies that could lead them into a life of medication and psychological supervision.


To a reader, this is all about "someone else's kids".  To a parent, this is all about "the child that is in the center of my universe".  When I think of my own children being adults and how it will look to be 60+ years old and having to work through social and emotional outbursts with a 20+ year old, I can't comprehend it.  And here is where my topic comes full circle.  How do parents bond with their children at a young age when socialization with autism creates such a gigantic barrier?  How can parents learn how to deeply stay connected to a child who isolates themselves and will only script in a corner with a book or other obsession?  And then how do we translate that into the teen years and into adulthood?  How?  HOW!? 


When my husband and I married 6 short years ago, we gave our lives completely over to God and His Will for our lives.  We said, "use us for Your Glory, no matter the cost".  We didn't know what the cost would be.  We still don't really know what He is up to and I'm not saying our children were the cost but we would be blind to not realize that somewhere in our life of autism is a bigger picture of God's grace.  We have asked ourselves, "how can God use this pain?".  We have literally spent hours and hours talking through situations we find ourselves in.  We overwhelmingly find God in the conversations we have with people who are in our life ONLY because of autism.  To be honest, none of the people that God has led to our house would be here if our kids were neurologically healthy.  None of them!  And THAT, is where we see God.  So where do we go from here?  We don't have the answer completely but I piece it together with other ideas that we have witnessed in our community and that is the fact that families with autism need help.  In my short experience in this field, I can say the mothers have nowhere to turn.  And, what happens most of the time is they turn from the family and run to outlets of one kind or another (pampering, girls night out, shopping, and in some cases unhealthy self focus that leads to division).  Not to say they are all bad outlets, or to say they don't love their families.  I think the opposite is true.  I say, they love their families deeply but it becomes empty if you lose the reciprocal connection with the ones that struggle socially.  If you have one nuero-typical child and a child with Autism, you see the black and white contrast of connection.


Is the point I'm trying to make becoming any clearer?  Parents need time and opportunites to connect with their autistic kiddos in an environment that makes them successful.  Not trips to the store!  Not running errands or going to birthday parties!  The kids will fail.  They will feel worse.  And the parents will stop trying.


This past 3-day weekend, we dedicated most of the time to taking our children on "child-centered" activities.  We went to Santa Cruz and let them go on rides for a few hours.  We took them to Chuck-E-Cheese and church and to the park.  It was a whirlwind of fun, very exhausting and very expensive.  We obviously can't do that every weekend.  But, what I will emphasize is what my husband said at the end of it.  He said, "this was the best weekend we have had with the kids EVER!"  For 2 years we have had respite care come to help watch kids for date nights and other "us" time.  It's necessary of course but it also takes us away from the kids.  Now listen carefully to what I'm about to say.  If ALL of the time we are with the kids is stressful because of busy therapy schedules and school buses and in between is only errand and grocery shopping, then where does the bonding time come in?  If we don't plan specific bonding time, our children nor ourselves will survive the long haul.  We believe that  real help comes in the form of coming along side families and taking the burden on with them.  Sacrificing a gentle easy time at the beach and instead offer to come to an outing to the beach with a family so you can be an extra set of hands and eyes.  What this does is it creates a sense of belonging to the child (which is vital!) and also the family will feel loved and supported and maybe what is more important is they will feel safe.  When we tackle big events like an amusement park or San Francisco without extra help, we fail...big time!  It is a terrible experience for everyone and we come home wishing we had never gone.


I challenge anyone reading this, if you know a family or ARE a family that longs for bonding, that wants their baby boy or teen girl to bond with them like they never have, please consider creating time WITH your child in an environment where they will succeed.  I know first hand the heartache that comes from forcing a regular life on kiddos that have a hard time with "regular".  Take breaks WITH your kids.  Let them be free of schedules and forced trips to Target.  And when you get a sitter...don't always take off and leave them but instead bring the sitter with you.  Make it a family event.  Play in the sprinklers, bury your feet in the sand, feed farm animals, plant some flowers.  It might just change your life and better yet, it may change theirs.

It's totally definitely lovely up in here!

I have emails to return and a recipe to look up for dinner.  Now that our iPad is broken and our 5 year old has been home from school for a few days, due to bowel issues (lovely), he has no regular outlet to keep him occupied.  Extra lovely.  So, about 11:30 our middle-little gets home from school.  Now they are all 3 here and as usual want 3 vastly different things to eat/drink or play with.  As a substitute for the iPad, I allow our son to use my iPhone but the battery doesn't last long and it's our only outgoing phone in the house.  Hence, major multitasking hiccups because while he's on it, I can't text or call people back that have, inevitably been trying to reach me for my daily schedule.  At this point, the 2 girls are roaming around taking their clothes off in the living room and begging for juice cups, at which point I get for them after climbing a gate, once to get in the kitchen and again to get out of the kitchen.  I have also been trying to get laundry done so I'm shifting baskets and making room for my Cornish game hens to thaw on my wash machine because the only counter space we have has a mixer, blender, coffee maker and tea kettle sitting on it....for lack of storage space...even more loveliness occurring.  Ok, now they have their juice and I've put in a cute little Britishy piggy program and now I can get back to my computer work.  But, that isn't all.  If I go in my room, Aidan has to slam the door behind me, it's just the way he likes it and nobody can argue with Aidan.  But, if the door is closed I can't hear the baby climb the gate and get a dry-erase marker and totally, definitely, can't hear her marking up the back door and dryer.  And then, repeat, after swatting her bum and lifting her over the gate, back in the room and out again to find her with a fork in the 3rd yogurt of the morning (which Daddy has made very clear has to last to the end of the week) and she looks at me and with a raspy little voice says, "hi".  I swat, lift and redirect her to the living room and make my way back to the emails that I still haven't done.  All the while, Kaelynn is in a diaper and standing on a chair that she can placed directly in front of the tv and she's hugging the screen and shouting out words that nobody can understand.  After she gets bored, she runs in the room where Aidan is calmly and quietly enjoying himself and screams "Kaelynns turn!!", so he goes to whack her in the face with the phone...but I was quicker this one time and grab the phone and in my held-back good mommy voice, I say, "Sorry Aidan, it's Kaelynn turn"(cuz it really was her turn)...he screams and runs out of the room and she proceeds to slam the door in my face.  Kylie is missing now.  Guess where she is?  In the kitchen of course, and standing in the fridge saying, "juice". Swat. Lift.  "I. want. choco. milk', chimes Aidan from behind me.  I tell him to wait and then I smell something.  Oh, the laxative must be working...so I'm off to change Aidan.  Done with Aidan.  "Mama, potty!", says Kaelynn as she does the wee dance to the bathroom and now Ky has to go too.  Well, why not! Lets all go in the 4x6 bathroom!  One is digging in the trash while the other is bashing my feet with a stool and we manage to get out of there with accomplished evacuation and mama gets the bright idea to put big girl panties on both girls!!  Yay!!  But it's lunch time so I've got to get something together but first I have to get them happy again and get these emails done.  Of course, as I'm hurrying around and being all "busy momish", Aidan shows me my dead phone.  No biggie.  We can do this.  And, it gives me a chance to dismiss the work that needs to be done and we do horsey rides and swings and climb on mommy until her hips are smashed into the carpet.  And lets pull mommy's hair and kick her in the back.  So, done with that quickly, haha.  I chose frozen burritos.  It's one of those "I cook from scratch a lot, and it's slim pickings" days!  Got them in the oven.  Back to email.  Hear the girls in the kitchen. whack. Lift. whack. Lift (there are 2 of them this time)...both crying cuz mama is so darn mean.  Back to emails.  Wow, I'm making progress.  Kids are quiet.  Getting stuff done.  Wait.  Kids are quiet.  I turn toward our bedroom door as it slowly opens and in comes a little finger with...stuff...on...it.  Instant adrenaline, OH NO!!!  She doesn't have a diaper on!!!  Ok! Major mess ummmm, all over her legs and now I've got to get these undies off of her with out making a bigger mess, ok....on the floor...no no no...we shouldn't have done that!  Meanwhile, my bedroom door is open because JUST THIS ONCE, I DIDNT LOCK IT BEHIND ME!!! and SO the other two take full advantage of mama being occupied!! Kaelynn has a heavy paper weight in her hand about ready to pound my laptop keyboard and Aidan can't be seen around the corner but I hear bouncing so my heart rate goes up about 50 pts.  Gotta find those baby wipes!  We finally get to the bathroom door, half organized with non-poop accidents waiting to happen, and the DOOR IS LOCKED!  I'm trying to get my key with two handfuls of mess and the key is hitting Kylie in the face! Get the door open and now maneuver around the new light-tan bath mat we just got and I'm dropping wipes in the toilet...I know...I know...they aren't supposed to go in there, but the trash is full and these things were nasty! This goes on. and on. and on.  We finally finish and I bring her out to the couch, and I'm running, I mean running because I know I have a fire to put out in my room and there is poopie on my carpet.  But Kaelynn isn't in the room anymore, only Aidan...and he's hiding in the closet...so I search for Kaelynn.  What better place than on top of the most expensive pillow in our house, with her big wet butt because she just wee'd all over the thing!  Off come those undies!  Now I have 2 naked little butts running around!!  And with children that have Autism, they repeat everything back to you as you say it...so there is a constant echo, "stop it! (stop it), what are you doing? (what are you doing), come here! (come here), where are your clothes?? (where are your clothes).  I decide they are both getting diapers and now Aidan needs to be changed again so he's pounding on the bedroom door that was locked by his sister.  Open. Lock. slam. open. lock. slam. unlock. climb. lift. whack!  And laundry is getting piled up again. And I still haven't emailed and how am I going to manage dinner.  It's now 2:20pm and we have therapy at 3:30.  And now I'm blogging...because darn it...I'm a freaking mess over here that needs an outlet!!  Loveliness surrounds me...yep, it's totally, definitely lovely up in here!  And that folks, is my memoire of the last hour.  Good day. Good night.  Good God.

Princess Giggle

Once upon a time in a land of laundry and dirty dishes, there lived a "still very young" princess named Giggle.  Giggle could find a reason to smile in almost any circumstance because it was in her nature to laugh instead of cry.

When things went wrong - she laughed.

When she got hurt - she laughed.

When the future looked very dark and lonely - she laughed. 

One day, while Giggle was looking for reasons to laugh, a very dark stranger came along and told Giggle that she didn't have any reasons to smile or be happy.  He gave her reasons to cry instead of laugh.  Giggle wasn't ready for this darkness so she let him steal her happy.  She let him hurt her joy and he made her cry day and night.  Suddenly, she found herself comfortable there in the dark.  Crying was her new laughing.  She eventually forgot how to laugh.  Her friends tried to help.  They told her the stranger was wrong and that she had reasons to laugh and be happy.  So, Giggle would try to laugh but she would cry instead.  Her friends didn't give up.  They cried with her.  They prayed with her.  They tried to make her smile.  They talked about all the good things Giggle had to look forward to.  They reminded Giggle about God's grace and His Love that was never ending.  Day and night, her friends stood by her side.

Many months went by...

Giggle still hadn't laughed.

On a sad Winter morning, she made her way to the garden to pray.  Although she wasn't happy, she still cried out to God everyday asking to have her happy back.  This day was different.  She was numb...but, He was waiting for her with big strong arms.  He wanted to see her smile and laugh again.  He wanted to restore her happy.  He had heard all the prayers and He had stored all the tears.  He was waiting for her heart to be open to receive His happy.  He smiled at her and her soul collapsed right before Him.  She was an empty vessel.  All cried out.  Nothing left to give.  It was then, that a flood of happy came in.  Funny thing was, nothing had changed really.  Her life was still the same.  But, once again she could smile when things were bad and laugh when she had no reason.  She exchanged her tears for laughter and her sadness for happy.

Giggle's happy came from God all along.  His happy was always available and was free.  Giggle decided to keep it and praised God for His Happy :)

Now Giggle is laughing again.

When her heart hurts - she laughs.

When she is lonely - she laughs.

When her circumstances are hard - she laughs.

After all, it's in her nature to laugh instead of cry.
Giggle :)