"Don't paint the nursery pink..."

While organizing some photos last night, I came upon one from my baby shower with Phoebe.  I can recall the conversation like it was yesterday.  My dad and uncle had learned in medical school that ultrasounds are often times wrong.  I knew I was having a baby girl, as confirmed by an ultrasound.  However, my dad and uncle both said, "Don't paint the nursery pink."   Sometimes ultrasounds are wrong- more times than not with the mistake on thinking it's a girl, and it coming out a boy.  Then you have a nice pink themed bedroom for your baby boy.  (While pink is fine for a boy--it is most associated with girls)

This was ok, because I had never planned to have a pink room for my baby girl.  She was going to be different.  She was going to be special.  Her room was blues, reds, and yellows.  Her theme was bugs (lady bugs, bees, butterflies, etc.).  I didn't want to overwhelm her world with pink and pink things.  I wanted her to be like me...a little girly, but also a little athletic and well-rounded.  I didn't use lace, or ruffles.  I painted her room myself, and it was adorable.  It was different, and unique.

Little did I know, I had set a precedence for how this baby would be.

She was Phoebe:  Different.  Unique.  Sort-of girlie.  Loves sports.  HATES bugs. :)

Autistic.

teenager and autism. not so fun.

Ok, so this post is not going to sugar coat this thing called autism.  It's not going to sugar coat having a teenager (which most of us are perfectly aware of).  The combination of the two seem to be causing somewhat of a problem at our house.  My perfectly complacent little girl has turned in to a defiant little (big) shit.  She has always been really good at mimicking others.  This means she hears things and can spew them right back at you, and in the right tone and context.  (For the most part)  She can say, "DUH!", when it's appropriate.  She can laugh when something is funny, and silly. Most of the time I think she does these things because she knows the correct response, other times she has learned them.  She has had social skills groups, and speech and language therapy since she was about 5 years old.  She also watches television and hears things around her.  I realize she says things also to get a reaction out of me, and others.  (which works perfectly)   For years and years, she has said things to get a reaction.  She doesn't care whether her attention seeking behavior is positive or negative.  It is just that...attention seeking.  I give her a lot of freedoms, but when I want her to do something she flat out refuses.  It's a genuine battle to get her to do it.   There is no filter in this person.  This child.  This autism.  This teenager.  She thinks the thoughts- and says them, and does them.  No filter.

I'm only human.  I'm her mother, but can only be insulted so much and then I have had it.  Being called, "a piece of crap", "dumb-ass", "asshole",  and various other things wears me out.  I pick my battles, but this one is a big no-no.  I run a tight ship at my house.  Autism will NOT be the reason she uses 1/2 a bottle of shampoo during every shower, needs to wear 8 outfits a day, clean herself after using the bathroom, or take care of the dreaded monthly cycle.  (don't get me started)     On the other hand, being a teenager will NOT be the reason she can say what she wants, do what she wants, not clean her room, pick up her clothes, and be a complete BITCH in this house.  She has a 5 step program at school...and SOON she will at home too.  Her favorite things will be earned.  No exceptions.

I'm done being called names, and being bullied by the autism/teenager in this house.  She will do well with the new program because it's essential.  I need some semblance of a life.  And, so does she.

Sleep Waves

Phoebe was an awesome sleeper.  At 4 weeks, she slept through the night.  She slept like a champ. She never cried, never fussed.  When her asthma-like symptoms started at around 8-9 months, everything changed.  I counted breaths, I did breathing treatments, I counted breaths again, and I slept sitting up with her on my chest when the ear infections started.  I would lay with her at nap time, so she would sleep.  (I admit...I slept too)   I didn't sleep at night.  She didn't sleep.  She was up at 6 a.m. every day.  I was fortunate she was a happy baby despite the illness and lack of sleep.

As years went on, the sleeping did not get better.   I laid with her every night starting at age 6 to get her to fall asleep.  During the divorce, I literally had to lay on her floor (because of her twin bed) with a pillow and a blanket.  She would look at me every 15 seconds, and then try and fall asleep.  I would close my eyes, squinting them every-so-slightly so that she couldn't tell.  She WOULD NOT sleep if my eyes were open.  She was afraid I'd leave.  I pretended to sleep...for years.  When puberty rolled around at an early age (9 years), she began to fight sleep.  I would lay next to her (in her new full-size bed) and touch her hair, and pretend again to be asleep.  Once asleep, I would look at her innocent little face.  So sweet.  How could such a sweet face have such issues inside?  I would sneak out of her room like a spy movie in the making.  If I made the floor creak...she would wake up and cry.  She woke EVERY night at 11 p.m. like clock work.  I wouldn't even attempt to go to bed before then.  I'd put her back to bed and start the process over again.  Then during the night, she would wake at 1:30, 3, and 5 a.m. to find food, ask questions, wander around the house and drink water.  I tried benadryl every night for a few years.  (yes- I did)  It would help for a while and then run it's course.  I slept when she was at school, at her dads, and any other time I could fit it in.  I was a walking autism zombie.  

During the earlier teenage years, I tried melatonin after I gave up on the benadryl.  Melatonin worked well to make her fall asleep, but never kept her asleep.  She had horrible days without the proper sleep.  Horrible.  Mine weren't exactly perfect either.  I could hardly function. Neither of us could.

Finally, last year I decided to make some changes.  I changed her doctor and found someone who actually cared about her.  Actually cared about her anxiety, and her sleep.  With a change in her anxiety medication the sleeping started to come back.  It was like a miracle.  I had forgotten what it was like to sleep 6-8 hours.  She had more energy, and so did I.  

Tonight, Phoebe woke up and came out around 10 p.m.  She asked me to come lay with her.  I went in and laid down.  After 10 seconds, she opened her eyes and said, "Mom, you can go...I am going to sleep now."

Sweet words to hear.  For sure.  I'll take the sleep while I can.  You never know what tomorrow brings.

My Life. :)

I'm exhausted.  I am doing the job I love, and I am exhausted.  I finally landed a job as an art teacher, and it does everything I hoped it would.  It fills the part of me that was missing.  I feel accomplished that I went back to school during what could be considered the hardest time in my life.  I borrowed a TON of money to do it, but still I did it.  I made it through death and grieving, and other crappy things going on in my family.  I still did it.   I cried through a lot of it.  (Shocking..I know)  I finished school and landed a job without a gap.  That's damn impressive. (Even to me!)  I'm exhausted.

During these accomplishments, I have continued to raise 2 children.  Anyone who is a parent knows this is a challenge, no matter what your work situation is.   I have my children 90% of the time.  I have watched them finish elementary school, start middle schools, enter high school, etc.  (Still while accomplishing my dream)   I have been teaching one child to be a gentleman, a friend, a good-smart student, a hard worker, a great brother, and a dreamer. (and driving him around the state to play soccer) Meanwhile, teaching the other child to be more independent, have better social skills, and to try and be as happy as possible.  (and toting her everywhere I go - literally everywhere) Exhausting.

If exhausted is the worst it will get...then I'll take it.  I teach 900-950 kids a week something about art.   That's amazing! I get to show Kindergarten through 8th grade students what art is about, and how they can love it too. The look when a child is inspired to make art is priceless. Then after teaching my love of art, I come home and get to show my own children something even better.  I get to show them that you can succeed at anything you want to do.  ANYTHING.  At any time.   Even better, I get to watch them do this as they grow.

Yes, I am exhausted, but this is the best exhaustion I have had in a while.

Tears and more tears

Some people laugh at how easily I can burst in to tears.  I cried when Phoebe was little and she would go to school on the first day.  Literally, every year I would cry.  That small child would get ready for school with her large backpack, brand new clothes, and crisp new supplies just like most other kids.   I would drive her happy little face to school, and walk her in.  Never a tear from her...only from me (after I left of course).  That sweet innocent face, who had no idea she was different.  No idea she would fall far behind her peers developmentally, and socially.  She thought she was like everyone else.  She always loved school, and everything about it.  She loved school supplies, the bus, and packing up her bag.  This is no different at age 15.  Phoebe still loves all these things just like she did at age 7.  In some sense, she is still that little innocent girl, waiting to be just like everyone else. She tries so hard, and has come so far.  She asks questions, surveys her situations, asks questions again and has anxiety when it's new.  She has been taught how to do these things.  Again, she has come a long way, but still has a certain sense of immaturity.  This will never go away.  It just won't.  Before her school year ends, we plan for the next.  We know where she will go, and who her teachers will be.    It's planned out. However, I still cry tears for her every year.  EVERY YEAR!  

Next, comes my son (the baby).  He has always been the baby of the family, and since the age of 3, I have done most of his (and her) things on my own.  I dropped him off at Kindergarten, and he looked at me and said, "I'm going with you."  I replied, "Um, no you're not.  You stay here with your teacher."  With that, I turned and left.  He did fine. (I only cried myself to sleep that night) That seems like yesterday.  It would be years and years before I had to deal with him leaving elementary school...right??  I blinked and it was done.  I didn't cry dropping him off at school in following years.  He understood.  He was brave, happy and like most of the other kids.  I didn't worry about him.  I just didn't.  He was great.  Last Spring, I cried myself through the last 2 months of school thinking about him starting Middle School this fall.  Everything has been completely "normal" for him.  He never needed an IEP, and has done everything "by the book."  Everything he has done has been a first for me.  I cried when he scored his first goal, touchdown, and was the star in the school play.  I needed a box of kleenex (a box!!) at his 5th grade graduation.  Laugh if you want, but these experiences have all been brand new for me.  Phoebe never did anything like that.  She couldn't handle any of that commotion, and was not good with crowds, noise, or focusing for long periods of time.  We (the schools and myself) accommodated her, just like you would do for your autistic child.

It may seem silly when I get a little teary as my 12-year-old gets on the bus this fall for 6th grade, but this whole experience is new for me.  He's a middle schooler.  (MIDDLE SCHOOL!) He will get on the bus by himself, and find his way by himself.  He won't need me as much, as years go on.

This will never be true of Phoebe, and her autism.  Its just a fact.

(So, let me cry and enjoy these experiences - and go ahead and make fun of me.  It's ok- I can handle it - WHERE ARE THE KLEENEX??)

Describe Autism.

I am often asked to describe Phoebe's autism to people who don't know her, or me that well.   I've described it here in blogs past.   Autism changes for us.  It's constantly changing.  We have the ghosts of past autism, ghost of present autism, and the ghost of future autism.  There are new obsessions, new advances, and new challenges.  Summer always brings about all sorts of new things.  I can't imagine what summer is like for someone who LOVES school, her friends, and the constant attention that school brings.

Ghosts of autism past are meltdowns, swearing fits, hitting, constant eating and general unhappiness.  (See previous blogs)  Currently, we have a much happier girl, who has better eating habits (not great-but better), and loves to please.  She is much better at playing with friends, and interacting with people (not perfect...but getting better!).  We watched her go on various rides over Fourth of July at a super loud, obnoxious carnival in traverse city...all with a big smile.  She will help with chores, and even help the babysitter bake cakes.  This leads us to the future autism.  There is a part of her that is  beginning to realize that her life is not the same as other 15-year-old girls.  She asks about driving, and boyfriends.  How does a mom answer that?  NEVER going to drive.  NEVER.  Those who know her, know why.  (Hello- attention span of a fly) Boyfriends.  Wow.  I don't even know where to begin.  Is there a possibility of a boyfriend?  Of course there is.  Essentially, this brings up a set of questions that I am not ready to answer.  She's on birth control, but it's not permanent. There was no question when it came to putting her on the pill.  This girl needs to be protected from predators, and even regular boys.  I will cross other bridges when I have to.  Then there is that unknown for the rest of her life.  What will she be able to do?  Where will she live?  WHO will she live with?  This plan doesn't end anytime soon.  I won't get to send her off to college, or with a new husband.  Her new future begins with a new school this fall part-time.  I am reluctant to start her at a new school, and we will see how it works out.  Even her Spring IEP included "future" plans.  Ugh.  Just ugh.

Today, I will focus on the ghost of present autism...just like I always do.  I'll take the autism today and deal with it, until a new ghost shows itself.  Then I'll adjust.  Just like I always do.

This is autism...after all.

Bad Teeth and the little things

Phoebe has bad teeth.  Yep, she does.  She had perfect teeth until she went through puberty and was diagnosed with allergies.  I mean perfect.  Starting about 5 years ago, they started to decline.  We have been to numerous dentist, and she hates having anything dental done.  She gets sensory overload.  (who doesn't)  There is a serious lack of information for dentists on children with autism, and a lack of people who can help in our area.  We have some awesome dentists here, and some have helped her as much as possible.  The essential question is WHY does she have bad teeth?  WHY?  I have never stopped helping her brush.  Twice daily and sometimes between meals.  This child never cleans her mouth out with water or her tongue, and leaves food in there like she is a chipmunk.  Not sure if she's unsure of her next meal, but that has to get cleaned out!  I have started a vitamin therapy that I researched and hoping that will help a little bit.  It's a never-ending guessing game with this child, and one that takes it's toll.  Next week, I will take her to Detroit Medical Center so that she can have surgery to fix all these problems.  It's not ideal, but has to be done.  I just want this whole thing to be done.  This autism mom is a nervous wreck.  Seeing any child have surgery is excruciating on a moms soul.

On a brighter note, I have seen some advances this summer so far.  At a soccer party for my son, Phoebe went out on the field for the "parents vs. team" game.  She stayed out at the game for the whole time.  This would never have happened 2, 4 even 6 years ago.  She didn't really play the game, but she was involved and talking the whole time.  It was quite the sight.  Then, I took my son and some of his friends to a local arcade, fun place and Phoebe came along (when doesn't she?).  She played with these boys the whole time, and never once complained.  She played mini-golf, played games and even did laser tag.  Who is this child??  We were there for over 2 hours...and only at the end did she complain that she had had enough.

After many weeks of no extended break from the kids, I sit here and drink my coffee enjoying the quiet.  While cleaning out Phoebes room this morning I found some of her classic LISTS.  She has made lists since she could write and pointed to lists when she couldn't.  This list said, "People I like."  Then it listed, Riley, Greg, Grant, Carter, Mom, Brendan, Nana, Joey, Charlie, Sadie, and the last one said...Phoebe.   That made me smile.

We like you too Phoebe. :)

Happy Summer!