I used to worry about everything.  I used to worry about having the perfect marriage, perfect children, the perfectly clean house, and looking like I’m all put together.  I kept that up for a while, or at least I tried.  When my marriage fell apart I worried about what people would think about me.  Would they think I was a failure?  I sure did.  When Phoebe was diagnosed with Autism/Pdd-NOS, things began to change.  Autism changed me.  It changed us as a family. To be able to help Phoebe, and be the mom I should be, I had to let go of some of those things that I worried about.  Some of those petty things that people worry about.  Our house is messy.  If I want to keep it clean, that is all I would do.  Phoebe changes clothes at least 3 times a day.  She’s messy, and things get dirty.  Phoebe likes certain kinds of clothes.  I can no longer dress her in the cutest clothes ever. Sweatpants and t-shirts are her thing.  I used to fight it, by trying to make her “look good.”  Why?  Who are we kidding?  Life is easier when she’s happy.   I still have to do all the things “normal” moms do as well.  It’s a balancing act.  There are repetitive questions, and learned scripts.  I used to correct her and talk over her. I worried what people might think of her or us.  Would they think she was dumb, or weird?  Now, I let the script run. She is happy when she has asked her questions and received the answers (even if she doesn’t understand).  I let it flow.  I used to get embarrassed when we were out, and she would throw a fit, or just meltdown.  Now, when that happens I know what to say, and how to handle it.  I don’t get upset, or embarrassed.  This is autism.  When life is too complicated and I know I can’t do it all, I call on friends and family to help. The guilt used to make me crazy when I would ask.  Now, I know that I need the help sometimes and it’s just fine.  This is autism, and I need to take the help when I can.

We have lived this life for more than 10 years, when she was initially diagnosed.  Each year, I know there are more and more things that I can/can’t do. However, I don’t worry if I can’t make an event, or if I have to change an appointment for the 5th time because it’s raining, or sweep up her room for the 6th time in a week.   I don’t worry about what people think of us anymore.  Life is messy, and we know it.

Try living here for a week or two…you’ll see what I mean.  🙂

Phoebe has always been a bit different, or unusual.  She says things for attention, and does things that most would not.  She’s defiant, and funny.  She doesn’t care whether you give her positive or negative attention.  She loves little kids, and loves to talk (even if she says the same things over and over). She has taken nearly every ADHD, anxiety, mood, and birth control on the market to help her autism, and her teenager-ness.  Let me remind you, she is only 16-years-old.  I can’t count the number of drugs we have tried. With various medications, she has lost and gained weight.  She has been to PT, OT, Speech therapy, behavioral therapy, etc.  When she struggles, I struggle.  Brendan struggles.  We are a family that struggles.

It’s been sixteen years of doing this.  Sixteen years, so far.  Every day I have to be on alert, and be ready for what her day brings.  I can’t be the laid back, easy going person I normally am.  Phoebe is anything but laid back and easy going.  She is scheduled, and alert.  I have learned how to react to things, in order to keep her calm.  I don’t cry in front of her unless it’s necessary, or she cries.  When Phoebe cries, it’s a while before I can get her back to normal.  I don’t get mad in front of her, or she gets mad.  Getting her out of a mad episode can last hours.  Her anticipatory anxiety is what she struggles with most.  Changes in routine, and upcoming events are what cause her the most problems.  Things need to be explained.  Times need to be right.  (To the minute) She is anxious, we are anxious.  Anxiety does things to people, and their health.  It can’t be easy to always feel anxious.  It can’t be easy to have autism.  She watches, and hears everything.  She looks to Brendan and I on how to react to certain situations.  Brendan knows what NOT to say, and how he needs to act (usually:).  Let me remind you, he is only 13. I struggle every day to make sure her days go smoothly, and that her life is good.  And, while Brendan and my struggle is no easy task, I can’t imagine what it is like to be inside her brain.  

This is her autism.  This is OUR autism.  (We struggle together)

Summer is coming to a close.  I was home every day this summer to take care of both kids.  I was home each day to save money, to make life easier on each of my children.  Being home, I got a real glimpse in to teenager autism/Pdd-NOS at it’s finest.  As summer began, things were going smoothly.  The same obsessions and crazy little things were still there.  Then, I began to notice something.  Anxiety is a bad thing for someone who has no control over emotions, and no ability to regulate anything.  When we are little, we are unaware of the world around us.  Unaware that it thunderstorms, that people use fireworks, that there are loud bangs, and traffic, and mean people.  We are totally dependent on our mommy (or dad), or whomever takes care of us each day.  

There are doubts.  In everyday life, I have doubts.  I doubt my decision of clothing, food, make-up (or lack of), chores, errands, etc. I have doubts.  I also have doubts about the abilities of my autistic child.  I doubt she can do things like normal sixteen-year-olds.  The history of raising her has taught me this. I stick to what I know.  I know she doesn’t like crowds, loud noises, lightening, and thunder.  I know that we must stick to the list of grocery items, and there is NEVER any going back for something we forgot.  We must always go forward.   I doubt that I can make her do new things.  Or has it just been easier to doubt, then to try?

I made a promise to myself when I became a single parent, that I would do things with each of my children individually.  I wanted to make sure they both felt special.  There aren’t two parents here to give them individual attention, so I do that on my own.  Brendan has always been in to soccer.  I was a soccer player, and he has loved the game since he was four-years-old.  He’s now on a travel team, and I try to make EVERY game.  I doubt that he will be mad if I miss, but I want him to know that I support him in everything he does.  For the first time this past year, Phoebe wanted to do a dance class.  I doubted her abilities when she was little, and she never took a dance class.   She wasn’t good at paying attention or listening, so I just never took her.  I doubted her.  A friend told me of a local dance studio that had a special needs dance class.  So, I took a chance and signed her up.  This was just for her.  I wasn’t going to make her do it.  It was her decision.  She had to be comfortable.  I REALLY doubted she would do it.  I really did.  We started in October.  The class was free of charge, and 45 minutes long.  We went every week.  There was only one week she wouldn’t get out, and that was practice of recital week.  She just refused.  Her anxiety was high.  Doubt.

Last Saturday night, I sat in a theater of about 300-400 people and watched my daughter dance.  Not to mention we sat for more than 2 hours (Dance number 61).  I really doubted she’d wait. She got up, and she did a whole routine with her friends, on a stage…with lights…and darkness. I sobbed.  I mean I sobbed for the whole routine.  I doubted her every step of the way.  I really did.  I told her we could go home when she looked stressed.  I doubted.

She did not doubt.  When she was done, she looked at me and said, “Let’s go mom, I did it.”  (Insert big tears)

When we got home she said, “That was exhausting, next year I’m wearing a skirt. And, why do you cry all the time?”

No doubt, next year she will wear a skirt and I’ll be crying. 🙂

Yes, I have a daughter.  She is amazing, smart, funny, kind, happy and helpful.  She’s also emotional,  attention-seeking, anxious, delayed developmentally, sad, and lonely.  I see photos on Facebook of girls her age doing things that girls do at 16.  They are cheerleading, playing soccer, basketball, having sleep-overs, texting friends and all the other things girls do.  (Including dating- yikes)  It makes me a envious, and a little sad.  Phoebe struggles socially with her autism.  She struggles to make friends, and keep them.  It’s painful to live, and painful to watch.  Every child wants a close friend.   She doesn’t really have that.  Every child deserves that.

We live in a small town.  Not a tiny town, but a smaller area.  I live in a great place to raise kids.  I really do.  I love that there isn’t traffic, and that I was able to buy a decent house for a decent price.  I LOVE living by my family.  It makes all the difference.  I had the great opportunity to further my education right by my house.  I didn’t have to commute.  It made it easy to change my career to better serve my kids.

Of course, there are trade-offs for these such luxuries. I need a decent Psychiatrist that understands autism, and specifically Phoebe’s autism.  We don’t have that.  I am not saying we don’t have good Psychiatrists.  We do.  We just don’t have the right kind for Phoebe, and not a lot to choose from.  Phoebe isn’t a child that you can sit down and talk to.  She has anxiety about people talking to her/about her and in front of her.  It’s weird, but it’s her.  I need a psych that understands that.  One that can see me, and maybe her for a short time.   I need a dentist that understands Phoebe’s special needs when there, and one that can sedate her for work that needs done.  I have a great one now, who can handle her at times for small amounts of work, and cleanings. (Seriously–he’s good, but I can’t even imagine how hard it is to do work on her when she’s awake) I need a sleep study done, but can’t find anyone in my small town who will allow for us to do it from home.  I can’t imagine trying to get her to do one at a facility.  It’s hard enough to get her to sleep.  Let’s not mention that in order to take her to these things, I need to take time off, and get her out of school.  (Ok – that’s a given with any office or appointment)  I can name about 5 other things I need, that only big name universities, or cities can give us.

I was told at the Yale Autism Clinic that this would be precisely the problem.  Good news is she has PDD-NOS (Pervasive Developmental Disorder-Not otherwise specified), and the bad news is…PDD-NOS.  There are not a lot of studies and research for PDD-NOS.  Every child with autism is different, and Phoebe is no exception.  Autism isn’t a cold, or a flu.  It’s not going away, and each year things change and I have to adjust.  (And so does she)  So with that, I’ll be making appointments for summer, and driving her back and forth (to the big city) for various things.

Just when I think I can sit back and relax for a bit…

I am reminded that this is autism, and that I’ll be looking for better things for her for the rest of her life. (Even if that does take me out of my little town)

Recently, I read a great article by a woman who was addressing the question of the cause of autism in her child.  Her child was born with it, and she doesn’t go over the why’s.  I have said this before that I don’t know what caused Phoebe’s autism.  Maybe you can decide…

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.

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.

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.