Tuesday, October 1, 2013

Mulitple children with Autism...The "A" word!! It does happen to everyday people.

My husband and I have 7 children (His, Hers and Ours).  2 of our precious little ones have Autism...and a 3rd (the baby) is still undergoing testing.  I think a lot about what I'd like to share with people, especially if I can shed light for families who are new to the autism world.  And for you naysayers, YES, it is another world!  A foreign world, where things of your former world no longer work, or make sense.  The air, food, space, touch, site, smell, sound, desire, hope, friendship, mobility ALL becomes different.  It's as if you were reaching your foot out to step on the ground and instead of finding a solid surface your foot bounced off and threw your body like a trampoline.  All the while, people around you are saying, "just step on it, why are you bouncing, it's easy, you aren't trying hard enough, here fill out some paperwork so you can get an instructor on how to step on the ground??!!"  It's humiliating and insulting to a certain degree, to be sure.  You are supposed to know these things!  They are YOUR children!  So what if they speak a different language and bounce off the ground...you still need to find a way to stabilize their life, your life and live in a world of "normal" people.

The ugly truth is, not all people can handle your new reality.  I have been completely dumped by friends, just dismissed and ignored.  I blame their ignorance and try my best to just forgive and move on but it is very difficult when you can't even address the underlying issue with them.  It's like you become a social pariah.  If they don't know "what" to say, they just disappear so they don't have to say what is on their mind.  It's hurtful and unkind.  I'd rather be told what people think of my situation, no matter how hard it is to hear.  But then again, I have learned a compassion about others that I didn't know before Autism.  A kind of "reading between the lines", that helps me filter my words to whom I'm speaking so I don't do to others, what I so often have done to me.  Now look at who I've become, a overly sensitive, critical and closed off person??  Not really...but sometimes...yes, that describes me.  I don't blame my children.  I don't really blame autism.  I just know I've changed because of it...because of the "A" word.  But not all changes are bad.  Not all changes make us worse.  I think a lot of the changes have affected our perspective...our values...and how we rely on God.

People say...You should write a book!  People say...You should tell your story!!  People say...You should help other families that are hurting because of the "A" word!!!  Can I ask one thing about that?  How on earth can I help others when I myself need help?

I remember a time when I could sit down and write, cook a meal, vacuum, grocery shop, use the bathroom, call a friend.  I can still do those things occasionally, but I almost always pay a price.  I have had to weigh out small tasks to determine if it's worth the risk of turning my back or placing my children in another room.  Our 2 autistic children fight ferociously, they climb everything and jump off of high places and they don't have empathy.  I have made the mistake of doing an everyday thing (like watching a TV program for 30 minutes) and even still, took at break after maybe 8 minutes and have walked into a room covered in feces...and babies faces and hands covered in it as well.  Was that worth the 8 minutes of starting a program, that I can no longer finish but now have to bathe 3 children (in a plastic tub insert in our shower nonetheless), and now have to scrub and sanitize the room, open windows and spray so hopefully the house won't reek of poop all night!!!

I love to write.  I love to read.  Now I don't only not have time...but I never get enough undivided time where I can actually concentrate and accomplish something.  Therefore I blog...and in venting and blogging I discover that indeed I can help others by merely sharing.

I now wear a key around my neck.  I am known as "The Keeper of the Key's" or "Hagrid" (Harry Potter reference :), and it's because we discovered that our children were figuring out how to unlock the front door.  Only solution to that is locking the house from the inside.  I also lock doors in the hall and have keys for those as well.  And hey, in case you were wondering, that goes against my every instinct!  I don't like it.  I want my kids to explore and feel open and welcome in THEIR home for goodness sake!  It's a terrible conundrum I find myself in.  I'm the mom who wants to be home with her kids!  One who wants to play dress up and make mud pies and study bugs!  I want to plant a garden with my little ones and watch it grow.  I don't want an outside job so we can have fancy cars and an expensive house in the rich part of town.  Yet, I am here...swimming upstream and doing what I can with my kids in a less than suitable home...and still not able to do the things a stay-at-home mom dreams of doing.

I was telling a friend yesterday that if I let down all my gates and unlocked all the doors to see what my kids would do...they would:

Run the perimeter of the house endlessly screaming, laughing, pushing and talking gibberish.
They would open every cupboard, drawer, door and pantry...all while emptying all the contents.  They would climb every shelf, counter, table, chair and bed.
They would jump from one piece of furniture to another and they don't notice glass or breakable items.
They wouldn't stop if I told them to.
They wouldn't care if someone got hurt.
They wouldn't care if they themselves got hurt.
They would keep going.
And going...

I understand.  Nobody should let the gates down with little ones running about, right?!  Well, in our house...the gates don't stop them, they just slow them down.  They can bust through anything.

Now, enough of the hardship talk.  Enough of the whoa's!!!  Let me tell you another side of this world.

Because of our families new challenge, we are forced to communicate about every detail of the day.  What the kids ate and drank, how they managed the bus, what therapy times they had and any small achievements that may have happened.  We talk about new ways to rearrange the furniture, how I can manage a trip to the store with certain kids and how another of them might be too hard on that day.  My husband checks in regularly to see if there is anything going on that we need to talk about or pray about.  Our schedule is strict.  Our bed time is early.  And our menu is simple.  Because of this intense interaction, we ALL know...from the oldest to the youngest...where everyone is physically & emotionally at any point of the day.  We don't require a lot of friend outings.  They simply don't ask.  I can skip some events that aren't crucial because our little guys don't know one way or the other...so there are no fights.

Our kids are still very young in their minds so there is a sweetness about them that most mommy's love to hold onto while their children are growing up and they want wish they would stay small.  That is a tender blessing.

Our special kids provide a sense of stability to our home.  It's strange but they really do.  We don't have to guess at decisions, we KNOW what we can and can't do.  It wasn't that way at first, it is something you learn as you are presented with issues that you never had to face with your older neurotypical children.  When we are in the moment we feel trapped but in a weird and almost magical way, we are free.  Basic smiles and hand movements that others don't notice become a proclamation to my husband in the other room, "HONEY!!!  DID YOU HEAR THAT!!!"  "PRAISE GOD!!", I hear him reply...and all that because Kaelynn said in a slow methodical voice, "Mama. I want cookie.Yes?'

Did you hear that?  A sentence?  Our 3 1/2 year old is making sentences!!!

And we carry on...

And we lift our requests to Jesus...

And we take pictures as we go along...

And the journey that takes place is like no other, it sings a song all it's own.  A song that angels sing.

Time Surge 1986 - "The Emerald Lights"

                Octavia didn’t say a word, but Tempest noticed she wasn’t flying upward toward the platform but rather back to the eleva...