Another IEP

Tomorrow is another IEP.  This is the Individualized Education Plan for those of you who don't know.  To date, Phoebe has had at least 20.  Twice per year, and updates as needed.   I have learned so much about the process over the years, as a parent.  There have been good ones, bad ones, and everything in between.  I have sobbed, laughed, sworn, and nearly thrown up.  No matter if they are good or bad, they are never easy to take.  While the teachers do their best to inform you about your child's positives....the whole process is really about what your child can't do.  Don't get me wrong, this is a necessary process, and what's best for your special needs child is usually figured out.   

As the PARENT, there is inherent guilt.  Why does my child lay on the floor and scream?  Why does she pick her skin until she bleeds?  Why does she tell people she's going to bitch slap them?  (Yes...it's true)  The list is endless.  I have NO idea why she does these things, and I have slowly learned over the years to not take it personally.  It's so hard.  I used to think I was a horrible parent.  I really did!!  I thought I must have done something wrong.  I didn't work, that was it.  I didn't breast feed her long enough, that was it.  I didn't give her enough vegetables, or vitamins.  You name it, I felt it.  Finally, as her mother I had to accept that she was different.  She was autistic, bi-polar, PDD-NOS, or whatever you want to call it.  She wasn't going to do things the way other kids did, and that was a hard thing to swallow.  I wasn't going to be able to brag about her dance abilities, or her test scores.  (nor would I have a sticker that said anything about my honor student)   I did get used to this.  I won't say it got easier, but I did/do know what to expect when IEP time comes around.  

I put my faith in her team of teachers, consultants, social workers, therapists, and everyone else involved in her education.  I go with my gut instincts and try to give them anything and everything they can use to help her at school.  We work as a team to provide her with something that works for her. I know what it takes to raise her--so I'm guessing teaching her is quite challenging.  (and thank you for those who do, and try to) Sometimes this whole thing takes some creativity.   

She is quite the unique child.  But aren't they all? 

Tomorrow is IEP number 21.  Let's see what we can come up with. 

Things change

This year has been full of ups and downs.  In the fall, my 14-year-old started high school.  Well, technically she started high school, and stayed half time at our local school for special needs students.  Within a few short weeks, we (including her full "team") knew this was not going to work.  300 kids pile in to the cafeteria at the high school to eat lunch right along side with Phoebe.  She freaked out.  I don't really blame her.  This can be overwhelming for most people.  This was a breaking point for me.  I can't fight the fight anymore.  While I really want my daughter to be able to write a paper, do algebraic problems, conduct a science experiment and be in the high school musical, this is not reasonable.  These exact things cause the most anxiety in her, and myself.  She has meltdowns, and then I have meltdowns.  (That is not pretty)  She doesn't like these academic restrictions put on her.  She has a hard time processing these things.  Do I think she is smart??  OF COURSE I do.  She is smart in ways that most schools don't measure.

I have stated what Phoebe's strengths are.  She can be a great helper for adults and little children.  She loves to do laundry, write lists, and grocery shop.  She loves to tell me when I am going the wrong way, or that I forgot my blinker in the turn lane.  She can name all the people in my address book, and where they live, how many kids and pets they have.  Sometimes she can even remember a story about them that I might have told.  She LOVES to boss people around (her way of controlling life).

In October, I switched her over to Millet Learning Center full-time.  I gave in to the fact that she won't do math, and won't really do writing.  I embraced her strengths, and love the fact that they do too.  She will still do things that aren't appropriate and seek attention in the wrong manner, but they get it.  They understand Phoebe.  She will still struggle at times, and I'm prepared for that.  I just didn't have the energy to fight the battle anymore.  She's happier, and I'm happier.  She still gets a "school" experience but in a place that is easier for her, and easier for me.

Thank you for all that help our "special" children.  It's not easy.  We know. (We live with it)

The life

Yes, I read it.  I know the story of the woman who tried to commit suicide, and kill her autistic daughter at the same time.  I've actually spoken to her a few times in the past, as she had a lot of information to share.  I will not comment, or judge on what she has done.  I life the life.  I am as a friend said..."one chapter away from that."  I am not saying there is horrible violence in my house, but I have made it so it isn't that way. (As best I can)  Can there be violence?  Yes.  Have I been hit?  Yes.  Does it hurt?  In every way.   I put little restraints on my autistic child.  I make her environment as easy on her as possible.  If I challenge that...I usually pay the price.  (and so does my son)   The form of payment for us is usually a major meltdown with breaking things, throwing things, and occasionally hitting.  It hasn't happened a lot, but it happens.  I hold my breath every day when she leaves for school that she will A) follow the rules, B) not hit or hurt someone, and C) make it through the 8 hour day with no meltdowns or calls to me.  After 10 years of living it, it has become our "normal."  

I used to spend my time trying to make her be less rigid with schedule, and less anxious about things.  Then I became so overwhelmed, that I just decided to make life easier for all of us.  We schedule our days to the point where I only need to let her know ahead of time if something is different for us, in our daily routine.  This could be soccer practice for my son, a meeting, a babysitter coming, or just an errand needing to be run.  If I don't, we pay the price.  I live the life.  It's exhausting as a single parent.  It's exhausting as a mother.  It's exhausting as a brother.  Autism is exhausting, and overwhelming.  I can't even imagine how my daughter feels on a daily basis facing these challenges.

This brings up a whole other issue of what will happen.  What will happen to her when she is grown? WHERE will she go?  I want her to live a full life filled with happiness and without anxst.  But, I seriously doubt this child will ever be able to be on her own.  I can see the writing on the wall with this one.  Where are the homes for adults with autism/PDD-NOS?  They do make it to adulthood and then what?  I'm assuming she will outlive her parents, and then what will happen?  What are we doing as a society to fix this?   The stats are growing each year, and something has to be done.

Yes, I read it.  I can sympathize with her.  I really can.  I live the life.

The end of summer

Lots of the time...I can joke, and laugh about the things that happen during my autism-filled life.  The end of summer is not one of those times.  Anxiety begins to set in for Phoebe.  She can't control any of those things that she needs to have control of.  What time will the bus pick her up?  Who will be there at school waiting for her?  Will she know where to go?  What are the names of the kids in her class?  What time does she leave school?  All of these seem trivial and easy to us, but for Phoebe this is life.  I don't have the answers for her yet...and this causes a lot of turmoil at home.  When Phoebe has anxiety all of her worst qualities come out.  She wants to eat all day long, sleep days away, and stay up at night.  She wants to follow me around to make sure I am not leaving, or possibly finding out any information that she may need.   It's these days that I wonder how I will ever get through all of this.  Even the tranquility of heading north to the nice beach in Traverse City does nothing but cause her uncertainty and anguish.  She only wants to know when we will be heading back home to her familiar surroundings such as: her bed, her food pantry, her bathtub, and her room (with room darkening shades and a loud fan, so she can shut the world out).

Her summer school program lasted 4 weeks.  4 weeks.  That's the only time she was happy and so excited.  I don't want to sound selfish, but 4 weeks?  I'd be willing to stand in front of anyone and put up a really good case on why year round school for this type of special needs is ESSENTIAL.  Even if it's a summer camp, summer retreat, or summer DAYCARE.  I don't care what you call it--it has to be done.   Our school system does not have the funds to provide for any more time in the summer for these autistic children.  If I had endless funds...I would provide this for her.  I seriously would!  Summer couldn't be any worse for them.  (Or maybe I should say...couldn't be any worse for us)

With anxiety comes frustration.  (For both of us)  I really want to love summer days and nights, and having fun, but at this point I'm just counting the days.  I need my Phoebe back.  The one who loves to go to her schools, and loves to get up, get dressed and be ready for her days!

The Phoebe that has a smile on her face.
I want that back.

A DAY in the life.

5:30 am. - Phoebe awakens and asks for breakfast.  I do not oblige.  She calls me a b*tch.  Then as I wait patiently- she falls back asleep in her bed.

6:30 am. - Phoebe knocks on my wall until I wake up.  She screams at me that I am mean and awful.  She decides to yell so loudly that I'm sure the neighborhood can hear her.  She is purposely trying to wake Brendan.  She decides to lay on my floor with her feet pounding on the ground.  I finally get up and yell at her to go back to bed.  She won't.

7:00 am.  Phoebe lays in her room until now, and then gets up and has THAT look.  She looks at me and starts a major meltdown.  Screaming and calling me names, laying on the floor, banging her head in the hall.  She follows me in to the kitchen where she flops on the floor and continues yelling nonsense, and finally waking Brendan.

7:30 am.  Phoebe goes back to bed until 8:30.  She gets up and wants more food.  I give her a normal breakfast, and 10 minutes later she wants a snack.  I say no.  She starts screaming again. This last for 20 minutes.

9:30 am. Phoebe gets up and begins to badger me about showering and what the plan is.  I give her the plan.  She is on my case every moment.  I finally shower and we run our errands.  (10 ish)

10:30 am.  Grocery shopping at meijers.  Phoebe is grabbing nearly every thing she can think of.  She wants pretzels, she wants bread, and apples.  These things are fine.  She grabs markers - and I say no.  (we have 500) Then we forget something - and she refuses to go back.  She yells at me in the store.  I tell her she will not get lunch if she yells.  She calms enough to get us out of the store.

11:30 am.  We have lunch and then everyone watches tv, and stays quiet for a while.  Phoebe decides to lay in her room and watch tv.  She doesn't sleep- just rests.

12:30 pm.  Phoebe starts to ask what we will do next.  We say let's swim.  We all get ready and get in the pool.  Phoebe won't leave Brendan alone.  Grabbing him, telling him to hurry...and touching his head every 5 seconds.  He screams at her--she screams back.  Phoebe is spitting water at everyone in the pool.  I ask her to not do that- she continues.  She is on the path to tick me off today.  She decides to grab at us at every chance she gets.  Unbelievable.

1:45 pm. We all get out of the pool.  Brendan wants to make money so he cleans the garage while phoebe throws chalk at him and sits in the driveway.  She comes in and asks what we are doing now. I tell her we can watch the Tigers or swim more.  She decides to watch the Tigers.  She screamsevery time  anyone does anything.  My head may explode.

2:45 pm.  We finish watching the Tigers- and then Phoebe starts messing with the dog.  She is following him around and poking him.  He is not amused.  He just sits by me hoping she will stop.  I yell at her to go to her room.  She refuses and lays on the floor.  I go over and quietly ask her to be nice and get up.  She does.

3:00 pm We watch a movie and then decide to do laundry.  She helps get the clothes in and out.  She helps fold.  She is happy.

4:00 pm.  We leave to go pick up my nephew.  She has to know where we are going and which way we will go.  How long will it take?  Are we going to pick him up now, or later, here or there, is he staying all night?  Are we getting slurpees?  Should you get gas?  Which way will we go home?

5:00 pm.  We finally get home and kids decide to go swim.  I am taking my 5 minutes of quiet to write this.

This is one of those days--one of those days I'd like bedtime to come soon.  #autism. #summer.  #omg.

So much unpredictability.  So much stress.  Will this get easier?  September...where are you?

That Darn Summer thing.

Ok- here we are again.  OH summer how I miss you...and your pure joy you brought me as a kid.  Again, autism and summer do not mix.  We can have the highest of intentions...and highest of hopes, but really summer is just one big span of stress.  90 days.  90 long-ass, stressful, autism filled, anxiety days.  A time of unpredictability, stress, no sleep, and little time to get much done.  (Yes, this is usually a time of relaxation and fun)  I usually get the family schedule set, and do as much as possible to make it easier...but autism always ups the ante during the summer.  Everything is on HIGH ALERT...and I do not lie.

Don't get me wrong, I can see the positive in a lot of the summertime.  Little things do help in summer, such as swimming, summer school and slurpees.  I am not the depressive person I make myself out to be on this blog.  I am unusually happy (prozac) most of the time, and find a lot to laugh at (it's all a lie:).         (that's a joke) We, as a family, will be working a lot on socialization this summer, and being more independent as we take that step towards high school.  The future looms right around the corner, and this child needs to gain some independence, and self-worth.  Again, a schedule is being made and a daily activity sheet is being drawn.  There has to be some kind of organization to this whole thing.  It helps.  (At least I hope it does) Look out summer...here we come.

It's hard enough to be the parent of an autistic child during the summer...can you imagine what it's like for them?

High School?

It hit me today.  Someone asked about Phoebe and high school.  When I used to answer this, it seemed such a far off concept.  Now, high school looms only 4 months away.   High School?  From the time this child has been in Kindergarten...school has been a challenge.  Initially, it was "She's ok, she just can't sit still or focus."  (I even got..."she can be distracted by the wind") This led to the initial belief that she had ADHD.  We got her some help, some meds, and she should have been perfect...right?  Well, it just didn't work that way.  Meds didn't work long term, and there was just something else about this child that was "different."

For the first few years at school, Phoebe maintained in a normal classroom with tons of Special Education and resource room help.  As she grew, and went through early puberty...things began to change.  (And by early I mean age 9- her cycle started)  This brought on new challenges that piled on top of the old challenges.  Not a good thing.  We had a diagnoses of ADHD, Anxiety, Autism, and Precocious puberty.  Behaviors (worse than ever before) started to trickle in, and her time in the regular education class ended.  In the 5th grade, she was transferred to an emotionally impaired room that could handle her.  She did pretty well with this situation, but medications to keep puberty away made her gain 100 pounds in nearly a year.  Her eating was out of control and nearly OCD.  She would lose control of her emotions and hit me, or her brother, or break things.  She started waking 4-5 times per night, which still goes on today.  I finally decided near the end of 5th grade to take her off medications and put her on a regulated birth control.  Mind you, none of these decisions were made only by me...Phoebe has seen a Geneticist, Neurologist, Psychiatrist, Psychologist, Pediatric gynecologist, Endocrinologist, Holistic medical doctor, Behavioral Pediatrician, and will see the Henry Ford Autism Team later this month.  (Not to mention the Yale Autism Team in 09)

Phoebe has been in a contained ASD room all throughout Middle School.  She has had 4 teachers in 3 years, and this year has been a hard one.  Near the middle of this year, she went 1/2 time at her middle school, and 1/2 time at school for kids with various special needs.  She gets time with peers, but not nearly as much as she'd like.   I took her off all ADHD meds, as they only exacerbated behavioral problems.  Today, she takes  minimal medications, but we will see what the team at Henry Ford believes.

In 4 short months, she will head off to high school.  Most kids are expected to be more adult in high school, take more responsibility...and be more mature.  I can't see this happening just yet.  I am still locking the cabinets, and helping her shower and bathe, and dress.  She still asks the same questions she has asked for the last 7 years, and still knows the answers to.  She still wants a list of the days activities, and meals.  She still looks for me after 5 minutes to make sure I haven't run down the road screaming.  (Hasn't happened...yet)    Do I expect more?  Yes.  Will it happen?  Maybe.

I certainly hope she can handle a new school, a new teacher and a new schedule.   This won't be an easy transition for her, or for me.  We will take on the challenge and do what we can.

I won't ever stop taking on the challenge.  (Neither of us will)

Why would I stop now?

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.

Thinking about Autism

I've written this before, but I'd like to write it again.  We have all been those people...those people, who look at a "different" child and wonder.  I used to do it myself.  You can't help it.  It's simply human nature to wonder why a child would be different than the norm.  What happened to them, and how did it happen?  It's not mean spirited...just shear curiosity about the differences.  The stares get worse as these children get older, and act like they are 5 years old, but look like they are 16.

When I am out with my 13 year old daughter, who is autistic...I see your stares.  I see that you think I'm a bad parent, when she screams that she can't have her 4th snack in 2 hours.  I know what you are thinking.  "That woman can't get control of her child."   You are exactly right.  I have no idea what this child's brain is like.  I don't know how her brain functions.  I can almost ALWAYS predict behaviors, and pre-cursors to those behaviors, but I still have no idea why these things happen.  And, when they do happen...why does it take 2 hours to calm her down?  What happens in her brain?  These are questions I will most likely never be able to answer.  Socialization is the key to her success, so I try to get her out as much as possible.  And, in doing that...meltdowns and behaviors are likely to occur when her world is uncontrolled.  Does this mean I will just let her get away with anything?  Heck no!  She will not have a snack an hour after dinner, or lunch, or breakfast.  I will make her walk on the treadmill, and earn her rewards.  She will not hit her brother for no reason, smack the dog or throw things without consequence.  Just like any other kid.

Long ago, I gave up on the notion of a "normal" daughter.  However, I grasped the concept of a special daughter.  A daughter that is not broken, or in need of fixing.  I don't want to place societal norms on her--just because that's what people want.  She doesn't learn like other kids.  She watches, listens, mimics, and memorizes. She can't write very well, but can change the settings on an iphone in 3 seconds.  I want someone, other than myself, to look at her and say..."wow...she has a special gift."  This child is not stupid, and she can hear your words.  She wants what ever kid wants...to be accepted.  So, go ahead and stare and make your judgements, but if you'd like to know what 1 in 88 children are dealing with - please ask.  I have a little bit of knowledge in the type of autism at our house.  

Our autism is not the same as everyone else's, but I'd be happy to share.  You might just see what an autistic brain is like.  (or at least her autistic brain)

Temple Grandin wrote:

“What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.” 

I truly believe that.