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. ;)