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.

Because I am 14 right?

Since the big birthday a week or so ago I have heard continually..."I can do that because I am 14 right?"  Right.  I have been giving Phoebe more tasks to complete and figure out on her own.  She still has to ask about 500 times before it is done, but she eventually gets to it.

"Mom, can you pick out my clothes?"
"No, Phoebe...you can do that."
"Cause I'm 14 right?"  

Thats right.  So what do "normal" 14 year olds accomplish other than texting, sports, shopping, talking, etc.?  I have expectations, and so does Brendan (even at 10).  Why should this be any different for Phoebe?  She should be able to accomplish tasks that help her become more independent.  I came up with a list.  This list should get her starting to think about how she can help herself in life.  I can't always be there.  So the new agenda starts now.

I want Phoebe to pick out her own clothes, successfully.  Do I care if they match?  Not really, but I can guide her.  (Ok- I will try not to, but when she comes out with a skirt, sweatshirt, and a plaid hat and high heels--we have to reconvene.)

"Cause I'm 14 right?"

I want Phoebe to get her own breakfast and snacks, without stealing 1/2 pound of salami and 6 slices of cheese on the side.  (Or a slice of bread and a 1/2 pound bag of pretzels.)

"Cause I'm 14 right?"

I want Phoebe to make her bed, shut the drawers in her dresser, and pick up the 45 blankets she uses at night.

"Cause I'm 14 right?"

I want Phoebe to pick a coat that is appropriate for the season.  (we are working on long sleeves for winter, and short sleeves for summer- which is opposite in her mind)

"Cause I'm 14 right?"

I want Phoebe to notice that her nose is running and get a kleenex.  Not wipe it on her sleeve, or stick her finger in it.  (This is asking a lot)

"Cause I'm 14 right?"

I want Phoebe to help with basic chores, and do them with some accuracy and not for the "treat" at the end.

"Cause I'm 14 right?"

I want Phoebe to be confident that she can do these things, because SHE is 14.   Phoebe is 14 years old, and it's time to start getting the life skills she needs to succeed - autism or not, and to become a young lady.  There are some things I can't work on, and some things I can.  I will focus on making this girl a functional member of society.  That is my goal.

"Cause I'm 42...right?" (Wow.)

14 and counting.

     It's upon me again.  It's birthday time for Phoebe, and each year I think, "I made it through another year."  I won't say it's getting easier with her, but I will say it's getting to be "normal."  This year, Phoebe turns 14.  It was fourteen years ago that the chubby- doll faced baby came in to this world.  And, not one day since has been "normal."  She continues to amaze me with what she can and can't do.  I wonder what the future may hold for her.  Recently, I read a great blog by another mother of an autistic girl, around Phoebe's age.  She has many of the same traits Phoebe has, and her mother like myself has asked this same question.  What will happen to these children?  I am not sure of the answer.
     Many people ask me.."what does Phoebe like to do?"  My answer to this is usually, "boss everyone around, and tell people that they like her." (this to be funny)  But, what does she really  like?  This is hard to say.  She likes to eat.  Alot.  She likes to talk...and talk...and talk...to get me to talk.   She likes clothes, and changing clothes, and watching the Tigers, and the Spartans and telling me "GO BLUE" just to tick me off.  (This makes me laugh)   But, what does she REALLY like to do?  I don't know.  I wonder if she even knows.  Under layers of anxiety, awkwardness, wonder, and where she is in this universe...there has to be some kind of basic interests. How do I get that out of her?  I have tried to guide her to certain things...and this doesn't seem to work.  I've tried sports, art (of course!), and everything in between.   She loves technology and ipad, ipod, iphone, and iMAC.  She can change settings, and show you have to do something in the blink of an eye.  Half the time I never know it's my phone ringing because Phoebe has changed the ringtone.  There has to be a way to channel this.  There is something there...I just know it.
     I will start watching closely and see if I can make something of this, because I do want Phoebe to have a future.  A future that involves her doing something she loves. (Other than eating) Don't we all want that?

Autism shouldn't take that away from her.

Happy 14th Birthday to my Phoebe.  May you always do what you love. :)

Tired

I'm tired of winter.  I'm tired of crying.  Tired of parenting, cleaning, homework, making dinner, making sure people are clean in this house, more cleaning, laundry, taking the trash out, and the month of February--to name a few.  I did not sign up to do this alone.  While that doesn't change the fact that I am...its still exhausting.   I'm tired of saying the same things over and over to Phoebe.  Tired of reassuring her of schedule, and time frame, and everything else she has insecurities about.   This is a 24/7 job.  I am not kidding when I say that.  Last night, Phoebe woke up at least 5 times. On Tuesdays and Thursdays I have class from 8-4.  Getting up with her 5 times takes its toll on my 42 year old body.   I feel much older, and much more worn out these last few weeks.   Never in my life, until now, have I woken up at 6 am, and thought, "sweet lord, how am I going to get through this today?"  Not even when these 2 children were infants did I wonder that.  However, at 28, and 31...I was much more agile to accomplish such things. (And, I did have some help)  Don't get me wrong...I am not complaining.  Ok- I'm TOTALLY complaining, and want the world to know it.

I look down the road and think...what does my life look like? Recently, I saw a man that I went to high school with, at Kroger.  He was with his mother, and he has always had special needs.  (I am not sure what- and it doesn't matter).  He has to be in his 40's, and his mother looked to be about 70.   I smiled and said hello to her, and to him.  She looked at me with wide eyes...and I said..."I remember him from high school."  She was so thrilled to have someone talk to her.  She said.."HOW NICE of you to say hello."  He smiled at me.  Not sure if he remembered, but I sure do.  When I got by her...I thought to myself..."Oh my god..that's me in 20 years."   Maybe some nice young person will say hello to Phoebe and I at Krogers, when we get old.   I certainly hope I don't look as tired as that nice lady did.  (But, I'm pretty sure I will)

I'm tired of being a single parent.  I'm tired of Autism.

I'm just tired.

The Autism Bully

There is a bully in our house.  It's called Autism.  I have been saying this for years, and it's even more true in the teenage years.  Autism causes rigid schedules, and strict guidelines (at least in her mind).  Our autism has a complete set of rules and regulations that everyone in our house must follow, or we get the wrath of a meltdown.   We have adjusted our way of life completely since this autism bully showed up at around 9 years old.  As if life were not hard enough on this child, she also was blessed with "womanhood" at 9 years old.  So, hormones and autism collided and what we had was a huge problem.

First and foremost, this autism bully wants food.  CONSTANTLY.  I am not sure if it's anxiety based, or hormone based or "rule" based, but it's a constant every day.  She will do anything to get what she wants.  Throw things, hit things, and yell constantly until every nerve in my body is worn down.  I have a set eating and snack schedule for her, but some days it's literally every 10 minutes that I am asked for food.  A person can lose their mind when a bully is constantly in your ear begging, yelling and fighting for food.

Second, this autism bully has a schedule.  It's not our schedule, it's not a realistic schedule...it's her schedule.  She has decided when we need to get up in the morning (have not used an alarm clock in 10 years), when we should eat breakfast, and what time we ABSOLUTELY need to be out the door.  If you think I'm exaggerating...you need to stop over.  If we are more than a few minutes off schedule...this bully freaks.  She will yell, and get agitated for a while.  It takes a long time for anxiety settle down.  If Phoebe has a 1/2 day of school, and it starts at 11:00...she gets up at the usual time and frets over what time the bus will come.  Her coat is on at 8, and sometimes she even sits in the driveway waiting.  How dare the school screw with the schedule?  Whoever is here sitting with her...gets the wrath of 100 questions of "When do you think the bus will come", "Who will be here later?” and "When I have a snack?"  This may not sound like bullying, but when the questions come every 3 seconds for 3 hours...you'd understand what I am talking about.

Lastly, the autism bully seeks attention.  Again, this happens at a constant rate.  For someone who does not distinguish very well between positive attention and negative attention, this is exhausting on her family.  About once every 3 days, this child with autism will go in her room and be alone for about 10-15 minutes.  That's it.  Otherwise, she is by me asking questions about schedule, eating, and anything else her mind is mulling over.   I can tell when she is going to seek attention to a disturbing level, and I can tell when she genuinely needs me to sit by her and calm her nerves.

You'd think at some point I'd get used to this bully.  I have been living with her for 13 years, 10 months now, however it never gets any easier.  In fact, it's slightly scary what the future may hold for this bully.  I'm hoping that someday she will have the will to fight it internally.  For now, we will fight it externally, and live with it.