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.   

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)

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.

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.

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?

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?

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?

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. 

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.

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.