which way is up?

Phoebe is getting ready for the 8th grade.  Mentally, not really, but physically she is.  Each year the same issues arise around this time with behavior, and moods.  For the last 7 years, I have tried to figure out what causes these upsets.  She'll have a few good days, and then a terrible day.  A few good, a few bad.  It's so frustrating.  It's frustrating for her, her teachers, and her mom.  But, what is it really?  As I have said, Phoebe is a socially motivated girl.  She wants nothing more than to be with her friends, or even just watch other kids.  She watches, listens and learns.  All the normal things are, and have been done during school.  She has a behavior plan, and the ABC chart, etc. I applaud those who try their best to help her.  

But, what is it really?  (I say that again.)  Is she behaving the way she is, because she wants more interaction with her peers?  Or does she NOT want any interaction with peers, or other CI, or EI classmates?  Is she only really wanting attention from anyone who will give it to her?  Yes, yes and yes.  This is my conclusion.  (and not a very educated one) We build on to her schedule time for peers, and then take them away when her behaviors don't improve.  I have picked her up 3-4 times in the last few weeks due to behavior.  I'm not talking a little behavior.  I'm talking all out meltdown, throw desks over, rip paper, wreck markers, swear and call people fuckers (sorry), and so on. I can't even explain the amount of guilt that I feel when they call me.  Is it my fault?  No.  Do I blame them for calling?  No.  But still there is guilt.  Every mother has it.  

They cleared the room one day.  Does this help, or make it worse?  WHO knows!?  And, I think it depends.  So, what do you do?  What does the mom do?  What does the teacher do?  What does her team do?  I'm putting this one in their hands, and hoping we can come up with something for the end of the school year.  (again)  I'm taking my prilosec (doubled up), and my prozac, and gearing up for this yearly roller coaster ride.  Let's do it.

gulp.

Pain and medication

This week was an interesting one.  Phoebe slightly complained on Easter that her tooth/mouth hurt.  While I believed her- I also thought it was probably a cavity, and some sensitivity to all the sugar she took in.  She didn't sleep that night, and woke up for the day at 4 am.  I was slightly annoyed, to say the least.  It was not one of my better mommy moments.  Finally, on Tuesday I took her to our favorite dentist, and low and behold...she had a raging abscessed tooth.  OH MY GOD.  I felt awful.  The few times I have known people with abscessed teeth - they have been laid out.  Literally, could hardly get up from where they laid.  Although she is 13, and slightly dramatic (I say that with sarcasm), she is still autistic.   Her pain tolerance is out of this world.  She has had fillings, tooth repairs (a broken front tooth), etc. and never complained.  When she had her tonsils out 7 years ago, immediately after she said, "can I have my bologna sandwich now?"  She never once said she didn't want to eat. (big shocker)  It was only a few years later when her brother had his tonsils out, that I realized she was amazing when it came to pain, and he was like a typical child...in tons of pain, and hard to console.  This autistic child is amazing.  (not that her brother isn't...he's amazing in his way too)

I had to give Phoebe Tylenol to help her sleep during the tooth pain.  While it helped, it started me on a journey to remember all the meds this child has taken.  For my Psychology class, I had to watch a documentary on childhood bi-polar disorder, and the medications for it.  It was eye-opening and scary.  The things we will do to make our kids more "normal".  God forbid they don't fit in that box of "normal" I don't deal with bi-polar, and I don't know what those families dealing with it have to do for their children.  I only deal with PDD-NOS.  Only.  (Ha!)  I do, however, wonder what I am doing to this child of mine.  She has taken medications to make her less hyper, less moody, less impulsive,  more able to focus, less anxious, less sleepy, more sleepy...etc.  At one point a few years ago, I weaned her off many of them to get back to the basics.  I needed to see who she was again.  Throw puberty in there, and growing...who knows what you're really getting?  While I want Phoebe to like herself, and be able to fit in with peers...I also want her to know that she is unique, and special.  She doesn't have to be like everyone else.

So Phoebe...
Not everyone can name every child in the 1st grade on the first day of school.  Not every child can list all the kids in the 4th grade, and then go back and make sure to cross off those that have moved.  Not every child can name the quarterbacks in the NFL, remember addresses, where mom left her keys, give the numbers and names of every basketball player on MSU's team, text my friends and finish my Words with Friends games, finish my sentences when I didn't really even know what I was going to say, and change all the settings on my iMac, and iPhone so that I can't figure out how to change it back.

Embrace your uniqueness in this Autism Awareness month.  I sure do.

Autism Awareness

Yes, it's Autism Awareness month.  You should "Light It Up Blue", for Autism Speaks, and do what you can to help out those who don't know anything about Autism.  I hate to sound cynical, but who doesn't know about autism?  I mean...we've all heard about it, and yes...some of us don't know the details...but we've heard.  I'VE HEARD IT...believe me.  I am so sick of hearing about it...I am blue in the face (no pun intended).  I'm tired of talking about it.  I'm sick of dealing with it.  I'm tired of listening to it.  I'm sick of parenting it.  I think you get my drift.

For those of you thinking about teaching autistic children, or working with autistic children, there is no one perfect definition of what autism is.  Yes, we know the dictionary terminology, but I'm talking about what it means to be autistic.  EVERY child is different.  I can't stress that enough.  Phoebe is proof that "typical" autism theories, and strategies don't always work for her.  I've always said she has Phoebetism.  She is super social, and sometimes inappropriate.  (ok- lots of the time...inappropriate)  She can talk you under the table, and work a computer, and an iPhone like no-one can.  She has co-existing conditions, as some autistic children do.  She has high anxiety, and serious impulsivity issues. Also, she wants constant attention, whether it be negative or positive.  (And, not to mention the OCD, eating voraciously, and temper, temper, temper:)  She can swear at the most inopportune moments and make you feel like the worst parent in the world.  However, she doesn't necessarily understand the meaning of what she's saying, or doing, and sometimes she does.  You assume she does and there lies the problem.  I even assume she can do, say, or act a certain way...and then I am forced to realize this isn't true.  (sometimes the hard way)

As a mother of a child with autism, I have to be on my toes at all times.  There isn't down time when I'm with her.  There are times I prepare for the worst, and she is the best...and then there are times I think she'll be great, and the 2 hour meltdown takes place.

Don't get me wrong, I can handle this autism/PDD-NOS/high functioning thing.  I tell myself I can.

But, you should know when you talk to me...I am always aware of autism.  ALWAYS.

It's April, and I am AWARE of Autism....Now you should be. Go educate yourself, and make a difference.

http://lightitupblue.org/Markslist/home.do

Spring Break...

Spring break.  Who doesn't love spring break?  Well, I think I can answer that for you...but you probably have already figured that out.  This won't be a blog about how awful breaks are for autistic kids, because we all know that.  I would like nothing more than to jet off to my favorite Sanibel Island with both kids in tow.  However, I have class, and the traveling part is the challenge.

Phoebe used to love to go out.  She loved to ride in a stroller and shop, and go to eat, and go to the mall, etc.  She loved it.  She would sit happily, and smile, and laugh.  Rarely did she have a meltdown, or want to come racing home.  That came with puberty and getting older.  That came with the reality that the world isn't so great...and things that scare me happen.  There are some irrational fears that also came along with adolescence, puberty, and autism.  Phoebe is deathly afraid of lightening, fireworks, rain (due to the lightening factor), and cannons.  (Yes, cannons...like the ones in Mackinaw Island, or parades)  She also fears the hole that is left between the opening of an elevator, and the floor.  She takes one GIANT step to get over that, just in case.  It has taken me years to figure out why these things are so hard for her.  Take away the noise factor, and what you have is general fear.  It's the not being able to control it, and not knowing what might happen.  We all have those fears.  We all have those thoughts...but our mind tells us that things will be ok, and we can rationalize with ourselves.  She doesn't have that.  She really tries, but in the end her fear gets the best of her, and she retreats to the basement, or under the covers of her bed.  She tries to mimic what we do, but it never really works.  No medicine has been able to help her with that, nor will any medicine every be able to.   I have finally just given in to the fact that rainy days are days spent inside making sure she feels comfortable.  The sheer panic that ensues when it storms, or when fireworks go off, is not something any mother should see in her child's eyes.  Ever.

Traveling causes a challenge for Phoebe too, as she can't control what a plane might do.  Her ears hurt, and she can't figure out how to clear them.  The turbulence makes her scream out loud, and the fact that she can't get up and get away makes her crazy.  And, don't get me started on the bathroom issue.  When she has to go- there is no waiting for the seatbelt sign.  I know...Benadryl might work, but then who's going to carry this 5-foot 4-inch WOMAN out of the plane??

Really it all boils down to the fact that I can't take the stress of trying to get her through that whole process without freaking out.  It's just too much (on me).  This mother has figured out when to pick her stressful times...and that is just not one of them.

Maybe the Xanax is for me?  .

On a lighter note...

The top 10 funny, or silly things Phoebe has said in her 13 years:

10.  "The snow" (said like...the sssssnooow) - Age 3

9.  "A momma go?  A momma go?  A momma go?"  (oh the irony) - Age 3...to 13.

8. "The garbage man took my ninny"....:(  (insert sobbing here) - Age 3 1/2

7. "My cotch"  (her word for crotch- thanks to her auntie) - age 5

6. "You wrecked my life" (said consistently to my brother- which makes us laugh)- age 7 - current

5. On a plane to the Yale Autism clinic- I let the flight attendants know that I had my autistic daughter on-board.  They made an announcement once we were in the air.  They said..."we would just like everyone to know that we have a special needs child on-board, so please be kind and polite."  Phoebe looked at me and said..."WHERE?" (love that)

4. On her 10th birthday, Phoebe's cousin called her and said..."Phoebe, happy birthday!  Are you doing anything tonight?"  Phoebe replied, "I have to go poop.  Bye."

3. At Epcot Center in Disney World, Phoebe was having a major meltdown.  She knew there would be fireworks, and she was doing anything to get me to take her home.  She screamed..."My dad is made of pizza sauce, now take me home WOMAN!"

2. At a friends house, Phoebe was trying to describe the pimple on her neck.  She kept calling it a "nipple".  I was correcting her, and as she had been ready to go for the last 10 minutes, she yelled at me..."WHATEVER, LET'S GO NIPPLES!"

1. My favorite... After leaving Epcot Center in Disney world, the bus driver said he would be nice, and drop us off-right at our condo.  Phoebe let him know.."You are a good driver."  Except that he missed it the first time, and had to go around.  On the go around, he put the bus in to a ditch, and got stuck.  We weren't far from the condo, so we decided to walk. On our way out the door she looked at him and said..."You're not really a good driver."  Good lord.

As hard as you are Ms. Phoebe, there are times you make me smile and laugh.  Oh the things we wish we could say...and you just do.  This is Phoebe's world...and you have to laugh.

Loneliness and autism

I'm lonely.  Phoebe is lonely.  I guess that makes autism a lonely disorder.  Autism makes it hard to make friends, and have friends.  It takes a special child to want to hang out with a child with autism.  Phoebe wants nothing more in life than to have friends.  Nothing.  She wants to know what her friends are doing at all times, and is constantly wondering when we will see her friends.  I have attempted to make contact, and kept lines of communication open with her friends, but in 7th grade...this is not easy.  Middle school is a difficult time as it is, and then to make time for a friend with autism may even make it more difficult.  Most kids are self conscious, growing in strange ways, and have hormonal issues.  This is the same for Phoebe...hormonal, self-conscious, and strangely aware of her differences.  However, her autism makes it hard to make friends.  She doesn't have the set of social skills to help her in making new friends, or many opportunities to do so.

Do you know what this means?  The same goes for me.  I have a lot of friends, but rarely see them.  I am limited to activities, because of autism.  Some might say this is my fault, and to a degree...that is true.  It's just easier.  Easier to not deal with a house that is destroyed, because I am out.  Easier to not see her face waiting up for me, when I go out in the evening.  Easier than closing every drawer she has opened in her room, and every drawer in the bathroom.  Easier than hiding anything of value that I don't want played with, or eaten (for that matter). Easier to not have to explain where I am going, who I am going with, when I will be home, and what things she can or can't do.  I have tried...believe me, and it is just easier to stay home.  I pay dearly when I say I'll be home at 8, and get home at 10.  A meltdown usually happens...either that night, or the next day.  

Don't get me wrong, I love my house, and I love my kids, but everyone needs some breaks.  (and I take them as they come)  I get breaks when the kids go with their dad, and that is usually every other weekend.  I take that opportunity to SLEEP, grocery shop, enjoy the silence, and try and see friends.  Many people have family time on weekends, and when I have the kids...I have family time.  (Constant interaction, following around, want to eat every 5 minutes, autism interaction)  I make the best of it, and enjoy it. (well, most of it)

Autism is intense.  (and lonely)

Happy Birthday to Phoebe!

As I write this, it will turn midnight, and be March 4, 2012.  This will be the day my daughter turns 13 years old.  It was thirteen years ago today that I was a scared, new mom in labor.  I won't bore you with my "birth story", as that is only a good story to me.  (Although I did get my fingers slammed in the car door) Thirteen years ago I had a lot of dreams for this baby girl.  This baby girl came with all the same hopes and dreams that most every mother has for their babies.  She had a load of black hair, a cherub round face, and bright red cheeks.  She cried like someone was seriously hurting her - which put a smile on my face.  When they showed me her face for the first time, I couldn't believe that she was mine.  Phoebe Louise Trier came via c-section at 6:00 pm on March 4, 1999.

This baby girl also came in to this world with issues from the beginning.  They were monumental at the time.  MONUMENTAL to a new mother, who had no idea what to expect.    She tried to breath before she was out, and took in fluid.  She spent five days in the NICU.  I was devastated, and scared to death.  She didn't like to eat, as she was being given IV fluids (or liquid jelly beans as my mom and I called it).  Once she was given the ok...we took our brand new baby girl home for the first time.   As any new mother will say, it was a scary, exciting time.

I won't say that this 13 year journey has been an easy one, because I would be lying.  We have been through ear tubes (4 sets), tonsillectomy, adenoidectomy, speech and language, physical therapy, occupational therapy, behavioral therapy, and numerous other things that I choose to not mention again.   I have had numerous breakdowns, and got back up on my feet and met the next challenge with strength that I never knew I had.  My strength came from this baby girl who smiled, giggled, babbled, hugged, kissed, and loved her mommy and daddy so much. She was a happy, happy, happy baby, who loved to go for walks, shop, visit friends, eat and be held.  (for the 19 months that she didn't walk)  She never met a milestone on-time, but when she did- I was ecstatic.  

So as I turn in to the mother of a teenager, I will meet all these new challenges with strength, and hope.  I will challenge her, and she won't like it.  I will make her try new foods, and she'll get mad, and I will be the one she will be the angriest at.  These things I am prepared for as a parent of a teenager, and as the parent of a child with Autism.

I am the one who will do these things for you, Phoebe, because baby girl...I love you as much as I did the day you were born.  My hopes and dreams have not changed for you.  You are an amazing, unique, smart, beautiful girl inside and out.  I love your quirky-ness.  Nothing will be easy, but who said life was easy?

Happy 13th Birthday. ;)