What is normal?  My normal is Phoebe.  She was a happy baby.  She was a sick baby.  She was a delayed baby, but she was normal to me.  She smiled at me when she was supposed to.  She cried when she was hungry. (she still does) She laughed and giggled, and said “dada” and “turf” (dog) when she was supposed to.  What she didn’t do was sit up on time, or crawl, or walk on time.  Eventually, most of these things came…and that was normal.  “She’s big for her age. She’ll do things later than most babies.”  Ok, I took that to be normal, and I went with it.  She had terrible asthma, and breathing treatments, and 1000 ear infections, and tubes, and all that stuff.  Normal stuff.  Nothing out of the ordinary.  At least to me…it didn’t seem that way.

Was it stressful?  Yep.  Was it rewarding?  Yes.  She would shop with me (and nana), and meet friends, and laugh and play with others.  She was not that different.  She was chubby, happy, smiley and funny!  The first noticeable difference was in pre-school.  She wasn’t where she should be.  Ok, sometimes that is normal.  I immediately started getting her the help she needed.  I got her extensive speech therapy, and occupational therapy, and physical therapy.  I did it all.  It was normal.   I did not think that “developmentally delayed” was a label.   It was who, and what she was.  Since then, I have done everything I can to help her.  This is my normal.

Recently, she was in her bed crying.  I went in and asked her what was the matter.  This is not an easy question for her…she can’t really answer, or know most of the time.  She replied…”I have no idea, but I can’t stop!”  I laughed.  I actually laughed.  I sat and looked at my autistic, delayed, PDD-NOS, whatever-you-want-to-call-it daughter and said to her…”yep, you’re a teenager, and that’s normal.”  I walked out of her room knowing that some of this is just normal teenager stuff.

Then I thought… “OH MY GOD! I HAVE A TEENAGER!”  (Is that normal?)

**A few more funny things Phoebe has said lately. (to lighten the mood)

• “mom, I need another American GOO-GOO doll.” (not even sure how she came up with that)
• “I’m just chillaxing”
• I said to her in the car…”you need to calm down.”  She replied…”I AM CALM!!!” (I laughed)
• “Mom, you should really brush your hair before you take him to school.” 🙂 (OMG- am I embarrassing her?)

Mothers Day has brought up many thoughts this week.  My mother is the funniest, and the best mom in the world.  I realize many people say that, but those of you who know my mom know she is THE BEST. We do everything together, talk many times per day, and enjoy each others company.  It really is the greatest.  I can’t imagine how my mother got through life, when her mother died when she was in her early 40’s.  When I was little- that seemed sooooo old.  Now, as I look to 42…it seems really young.  Not sure how she dealt with that, and raised my brother and I with my dad.

All I ever wanted was to be just like my mom.  I wanted to go and graduate from Michigan State, and I did.  I wanted to date my high school sweetheart, get married and have children, and I did.  I wanted to be a stay-at-home mom, and I was.  However, that’s as far as I got.  I never looked past raising children.  I wanted to be a mom, and I really never looked forward.  During my early 20’s, I worked knowing there would be an end in sight, and that kids would be my focus.  That went as planned.  The wrench came in when the kids were little, and my husband left and we subsequently divorced.  That was the first thing that was not in the plan.  My thinking changed.  My life changed.  Then came the autism diagnosis. (PDD-NOS)

Autism was also not in the plan. (And, who in their right mind would plan for that??)  When you hear about kids with disabilities, before you actually have children, you think that it’s not something you’ll ever have to worry about.  Statistics are on your side.  (so you think)  I had the same ideas for my babies when they were born –  that my parents had for me.  They will grow up, and go to college and move out.  My husband and I will travel, and do all those things that parents do when their kids leave.  Right?  However, autism was not in that plan.  As Phoebe gets older, I realize that this “hands-on” parenting thing may go on for me –  for a lot longer than most average children.  I didn’t plan for this.  Will it fit in to the plan?  Of course it will.  But, again…this is not where I thought I would be when I was 42.  When Phoebe was 12 months, she began to scoot on her butt to get around.  We called her the butt scooter.  She never crawled, and walked late.  That seemed so cute then.  I knew she would walk eventually, and that she wouldn’t “scoot” down the aisle at her wedding.   Now I look at her and think…wedding?  Not sure that’s even possible.

Phoebe has made huge strides in her life.  She has overcome a lot of obstacles, and I enjoy seeing her mature as little as it may be.  She makes me laugh.  She makes me cry.  She makes me scream.  I guess that makes me her mother.  Forever.  No matter how long that means.  Parenting her for the rest of my life has situated itself in to my plan.

Autism was not in the plan- but it’s in our lives.  Forever.

Happy Mothers Day:)

Autism is non-stop.  During the weekends, I feel like I can’t stop thinking about what I could be doing for myself, what I should be doing better for my kids, what I could be doing for my health, what I want to be doing with my friends, and those “trendy” fun things I want to do with my kids.  It’s the idea of what life should be.  The idea.  Not the reality.  My personality could not be farther from what my daughters is.  (for the most part)  She has high anxiety about the unknown, and I really don’t.  She likes schedule rigidity, and sameness in foods, and routine routine routine.  I really…um, don’t.  (Can I say that?)  Life isn’t that simple.  I can’t make things the same every day.  I can’t control everything…I just can’t.  I try really hard to, but in the end it’s not really possible.  Autism is non-stop, and so is life.  I hate to say it, but the autism is going to have to adapt.  (sorry- but it’s true)

This past weekend we had a garage sale.  Yes, my son helped me tremendously, and Phoebe helped here and there too.  But, tonight I am one tired momma.  My son got asked to go to a movie, and so I let him.  Phoebe wanted to go, and I hesitated on whether to take her.  Movies are not her thing, but the other kids were going, and she wanted to go with them.  Finally, I just said no.  Right or wrong…I just didn’t have it in me.  I didn’t want to go out for pop, and the bathroom 16 times–just so she could get up.  I just wanted to go home and relax.  As selfish as that is…I just said no.  She was not happy, but finally settled down. There are just days I don’t want to deal with the autism.  (more days than I care to think about) Tonight, the autism had to adapt.

When people or Facebook asks what super hero you would be, or what super power you would have….my answer would be the ability to have a force field like shield around me and Phoebe.  Then when something came up that she didn’t like…I could just yell…”SHIELD!” and she and I would be ok.  Right? Or maybe I’d choose to be invisible.  That would put a serious wrench in the non-stop autism world Phoebe lives in.  Mom?  Mom?  Mom? (that could get annoying)

Needless to say, I had to be selfish and do something for me.  I felt bad, but in the end it was all ok.  Everyone is now sound asleep and ready for a new week.

Ok Autism- I’m ready for this week.  SHIELD! (darn, it didn’t work)

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.  

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.

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.  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?  .

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.

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.

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. 😉