Lifetime of care

It's daunting really.  The idea of taking care of someone for the rest of your life.  As a mother, it's in my nature to want to care for my children- to control them, to be by them for triumphs and tragedies. I am all for it, in fact I find joy in taking care of them.  The one thing that scares me is the unpredictability of autism.  There hasn't been a lot of maturation in Phoebe in the last few years.  She has leveled out at about a 4th grade level.  (Maybe)  So, the idea of taking care of a child, for the rest of my life, with the mental level of an 8-9 year-old is starting to play on my mind.   I'm beginning to see that it's wearing on me.  I have more wrinkles, aches, grey hair, stress, ulcer activity, heartburn...you name it.  (I know- I'm 42, it's normal right?)   I need to come up with a plan, and it's not coming to me very quickly. 

I find happiness in seeing my younger child be successful at school, and have friends, and be great in sports, and all that fun stuff.  He's becoming more independent each day, and loving life as he grows.   In the same breath...it breaks my heart that a child with autism does not have that same experience.  Does she want that?  Of course.  Do I want that?  Yes--more than anything.  I foster those experiences for her.  I take her to every store, game and every other possible thing I can.  I want her to experience life, and get used to the unknowns.   But, what's going to happen when I am gone? Who will take her?  Who will foster these things for her?   Unfortunately, no one cares for your own child as much as you do.  It's true.  (really)  

So, starting this year, I have to put my big girl pants on and come up with a plan for this child, who lives in a woman's body.  I have to make sure she is protected from harm, and taken care of medically, and that she has shelter, food, money, and FRIENDS.  How can I do this?  I have no idea...but the research starts now.  If I could live forever, I would give her a lifetime of care- no problem.

But, I am not getting any younger, and neither is she.  

Kindness of others

In the wake of yet another horrible tragedy that occurred in our nation,  I stopped to read about the kindness of others after the explosions.  Instead of writing about all the things that Phoebe does not get, or is not aware of...I decided to write about others.  The kindness of others around us.  Phoebe is different.  Everyone around my family gets that.  It's the kindness towards her that really makes me smile.

We have all been around people who make us uncomfortable.  (Yes...we all have)  We have all been around people who are "different", "not average", "unusual", or whatever you chose to call it.  It's the people who step out of their comfort zone to say "Hi Phoebe...you look so cute!", or "How are you today...are you having a good day?", that make a difference.  My family, and our large network of friends have all accepted Phoebe.  They know she loves to talk to kids, and ask the same questions over and over (and over) just so she can hear their voices.  They all know that Phoebe could tell them that her mother smacks her, and they just smile, and say..."NO...she does not."  (I really don't.  Really)  She could also throw out a swear word or two at any moment--just to see who is paying attention to her.  Most of these kind, thoughtful people have figured out to ignore it and move on.  They even help her tie her shoes, or pull-up her pants, when she knows I am standing right there.  Worst of all...they even show her the bathroom when those wonderful words..."I HAVE TO POOP!", come flying out of her mouth at any given moment.  (and yes her pants may already be down)


To these people who surround us...we say thank-you for your kindness and understanding.  It's not easy...I know. (but you make it look that way)

Special thanks to my neighbors who allow Phoebe to come over and play.  She won't let me come with her--she wants to be alone.  I can't even imagine what she says. :)

Kindness.  It's contagious.  Try-it.

Autism Awareness

April is Autism Awareness month.  As I have said before...this house is very aware.  We are aware of differences.  We have also become aware of a life that 1 in 50 families deals with on a daily basis.

This is our awareness...

The autism in our house:

Speaks the truth. Good or bad.
Seeks attention to the fullest.  Good or bad.
Is OCD about eating.
Can't maintain a conversation.
Hates hair brushing.
Hates teeth brushing.
Loves water. (baths x2)
Can't tie her shoe. 
Hates socks.
Loves dresses, hats, and shoes.
Is deathly afraid of rain, thunder, and lightening.
Is afraid of fireworks.
Loves Dora the Explorer.  (Still)
Will ask you your name 50 times in a row...just to hear you talk.
Loves boys. (yikes)
Has her period that she can't take care of.
Wakes up at least 5 times a night.  
Watches kids play, yet sits at a distance.
Makes sure I don't forget my keys, purse or coat when leaving.
Remembers every name, address, and phone number of people she meets.
Calls her brother, "Fred."
Loves to make a list.
Loves American Girl dolls.  (Simply for the hair) (We've had at least 5)
Changes all the settings on my computer, iphone, ipad, and another other ithing we own.  (in a matter of seconds)
Loves the NFL.  (And can name all the QB's)
Loves MLB.  
Loves NCAA Basketball.  
Needs to be home by 8 pm.  (or all hell breaks loose)
Won't sleep until her mom is home.  (Whether that is 8 pm, or 3 am)
Loves her family.
Wants friends.

Desperately wants to be like everyone else.

I could go on and on, but you get the idea.   Be patient when dealing with children, and adults, with autism.

April is Autism Awareness Month.
We are aware.  It's time you do.