Since the big birthday a week or so ago I have heard continually…”I can do that because I am 14 right?”  Right.  I have been giving Phoebe more tasks to complete and figure out on her own.  She still has to ask about 500 times before it is done, but she eventually gets to it.

“Mom, can you pick out my clothes?”
“No, Phoebe…you can do that.”
“Cause I’m 14 right?”  

Thats right.  So what do “normal” 14 year olds accomplish other than texting, sports, shopping, talking, etc.?  I have expectations, and so does Brendan (even at 10).  Why should this be any different for Phoebe?  She should be able to accomplish tasks that help her become more independent.  I came up with a list.  This list should get her starting to think about how she can help herself in life.  I can’t always be there.  So the new agenda starts now.

I want Phoebe to pick out her own clothes, successfully.  Do I care if they match?  Not really, but I can guide her.  (Ok- I will try not to, but when she comes out with a skirt, sweatshirt, and a plaid hat and high heels–we have to reconvene.)

“Cause I’m 14 right?”

I want Phoebe to get her own breakfast and snacks, without stealing 1/2 pound of salami and 6 slices of cheese on the side.  (Or a slice of bread and a 1/2 pound bag of pretzels.)

“Cause I’m 14 right?”

I want Phoebe to make her bed, shut the drawers in her dresser, and pick up the 45 blankets she uses at night.

“Cause I’m 14 right?”

I want Phoebe to pick a coat that is appropriate for the season.  (we are working on long sleeves for winter, and short sleeves for summer- which is opposite in her mind)

“Cause I’m 14 right?”

I want Phoebe to notice that her nose is running and get a kleenex.  Not wipe it on her sleeve, or stick her finger in it.  (This is asking a lot)

“Cause I’m 14 right?”

I want Phoebe to help with basic chores, and do them with some accuracy and not for the “treat” at the end.

“Cause I’m 14 right?”

I want Phoebe to be confident that she can do these things, because SHE is 14.   Phoebe is 14 years old, and it’s time to start getting the life skills she needs to succeed – autism or not, and to become a young lady.  There are some things I can’t work on, and some things I can.  I will focus on making this girl a functional member of society.  That is my goal.

“Cause I’m 42…right?” (Wow.)

     It’s upon me again.  It’s birthday time for Phoebe, and each year I think, “I made it through another year.”  I won’t say it’s getting easier with her, but I will say it’s getting to be “normal.”  This year, Phoebe turns 14.  It was fourteen years ago that the chubby- doll faced baby came in to this world.  And, not one day since has been “normal.”  She continues to amaze me with what she can and can’t do.  I wonder what the future may hold for her.  Recently, I read a great blog by another mother of an autistic girl, around Phoebe’s age.  She has many of the same traits Phoebe has, and her mother like myself has asked this same question.  What will happen to these children?  I am not sure of the answer.
     Many people ask me..”what does Phoebe like to do?”  My answer to this is usually, “boss everyone around, and tell people that they like her.” (this to be funny)  But, what does she really  like?  This is hard to say.  She likes to eat.  Alot.  She likes to talk…and talk…and talk…to get me to talk.   She likes clothes, and changing clothes, and watching the Tigers, and the Spartans and telling me “GO BLUE” just to tick me off.  (This makes me laugh)   But, what does she REALLY like to do?  I don’t know.  I wonder if she even knows.  Under layers of anxiety, awkwardness, wonder, and where she is in this universe…there has to be some kind of basic interests. How do I get that out of her?  I have tried to guide her to certain things…and this doesn’t seem to work.  I’ve tried sports, art (of course!), and everything in between.   She loves technology and ipad, ipod, iphone, and iMAC.  She can change settings, and show you have to do something in the blink of an eye.  Half the time I never know it’s my phone ringing because Phoebe has changed the ringtone.  There has to be a way to channel this.  There is something there…I just know it.
     I will start watching closely and see if I can make something of this, because I do want Phoebe to have a future.  A future that involves her doing something she loves. (Other than eating) Don’t we all want that?

Autism shouldn’t take that away from her.

Happy 14th Birthday to my Phoebe.  May you always do what you love. 🙂

I’m tired of winter.  I’m tired of crying.  Tired of parenting, cleaning, homework, making dinner, making sure people are clean in this house, more cleaning, laundry, taking the trash out, and the month of February–to name a few.  I did not sign up to do this alone.  While that doesn’t change the fact that I am…its still exhausting.   I’m tired of saying the same things over and over to Phoebe.  Tired of reassuring her of schedule, and time frame, and everything else she has insecurities about.   This is a 24/7 job.  I am not kidding when I say that.  Last night, Phoebe woke up at least 5 times. On Tuesdays and Thursdays I have class from 8-4.  Getting up with her 5 times takes its toll on my 42 year old body.   I feel much older, and much more worn out these last few weeks.   Never in my life, until now, have I woken up at 6 am, and thought, “sweet lord, how am I going to get through this today?”  Not even when these 2 children were infants did I wonder that.  However, at 28, and 31…I was much more agile to accomplish such things. (And, I did have some help)  Don’t get me wrong…I am not complaining.  Ok- I’m TOTALLY complaining, and want the world to know it.

I look down the road and think…what does my life look like? Recently, I saw a man that I went to high school with, at Kroger.  He was with his mother, and he has always had special needs.  (I am not sure what- and it doesn’t matter).  He has to be in his 40’s, and his mother looked to be about 70.   I smiled and said hello to her, and to him.  She looked at me with wide eyes…and I said…”I remember him from high school.”  She was so thrilled to have someone talk to her.  She said..”HOW NICE of you to say hello.”  He smiled at me.  Not sure if he remembered, but I sure do.  When I got by her…I thought to myself…”Oh my god..that’s me in 20 years.”   Maybe some nice young person will say hello to Phoebe and I at Krogers, when we get old.   I certainly hope I don’t look as tired as that nice lady did.  (But, I’m pretty sure I will)

I’m tired of being a single parent.  I’m tired of Autism.

I’m just tired.

I’ve written this before, but I’d like to write it again.  We have all been those people…those people, who look at a “different” child and wonder.  I used to do it myself.  You can’t help it.  It’s simply human nature to wonder why a child would be different than the norm.  What happened to them, and how did it happen?  It’s not mean spirited…just shear curiosity about the differences.  The stares get worse as these children get older, and act like they are 5 years old, but look like they are 16.

This post has taken me a while to write.  I will not bore you with the fact that I am dealing with a huge loss in my family.  My dad passed away a few weeks ago- and our family is experiencing the worst thing possible- death.  Most of you know that.  As devastating as it was for me, it was even harder for the autism in our family.  Most people know about death.  They can process it as much as possible, and learn to deal with it.  This isn’t an easy concept for autism.  The tangible evidence is gone.  Where did it go?  The concept of illness, or heaven can not be easily explained, or shown on a piece of paper.  A social story doesn’t do it.  I did not let her come to the funeral, because the overwhelming amount of people and sadness would have done her in.  Let’s be honest, it did me in…and I’m not autistic.  (At least I don’t think I am)

My child with autism follows me around- watching me for emotions she doesn’t normally see, and then mimics these herself.  She cries when I cry.  She’s not sure why, but she can sense that things are not the same.  I finally took her to my parents house, and let her see for herself that he was no longer there. However, his things are there, his car is there, and she wasn’t convinced.  “MOM, his car is here. I checked, and his clothes are here.” How do you explain that?  I did my best.

This is one of those things that will just take time to sink in.  Maybe she’ll watch me and see that slowly each day I will get better, and act less depressed.  This will help her be less worried and make her world be “back to normal.” Whatever that is.

It’s that time again.  The Holidays.  It’s a weird time for my autistic kid.  She gets anxious, and undone with no school, and having so many unknowns makes her crazy.  Again, we plan and hope for the best.

What started as a way to make evenings easier at holiday time has turned in to a full on tradition.  When I first moved back to Saginaw, night time was the hardest for me.  I was alone, and unhappy.  It was the first Christmas without a husband to help, and the first holiday in my own house.  One crazy kid night, I decided that jammies, hot cocoa, and a ride in the car to look at Christmas lights was the answer.  While it was only about 20 minutes of quiet…it was a moment of peace for me.  We brought blankets, and listened to Christmas music.  The dog always came along.  At first, I was pushing them to get in the car, then after only a few short trips…we had a tradition.  Every year since then, Phoebe has asked the week of Thanksgiving about our “light trips.” I was the one holding back thinking I didn’t really want to get in the car and drive around, in the last couple years.  

Tonight, was the first of the many asks about the light trips.  I told her that there might not be many up yet, but she was insistent that we go. Brendan ran and got his jammies on, and Phoebe got the dog.  We hopped in our mini-van (how cliche) and off we went.  We did see a few lights, but not as many as we hoped.  Phoebe replied…”It might be early. We can go again in a few days.”  And, both Brendan and I said…”YEP.  It’s tradition.”

So, here it is again.  The start of our trek to look at lights every other night.   If only life could go this smoothly.  🙂

Happy Turkey Day!

Parenting is a challenge.  Parents all know that.  Most of us went in to the whole thing knowing this ahead of time.  Recently, my mom asked me…”Did you think you could ever have done this?” And, you know…I’m not sure I thought I could.  I know for a fact on one lonely day while waiting to move back to Saginaw, I sat in my living room thinking those exact thoughts.  “How am I going to do this?  How will I ever be able to be alone, and accomplish parenting and everything else?”  This among the typical sobs that I had then.  Not to mention the thoughts on never finding love again.  (that’s a whole different blog)

I had a 3 year old, and a 5 1/2 year old when I moved here.  (old news- I know) That 3-year-old needed me as much as any baby, and the 5-year-old needed me even more with the addition of an autism diagnosis.  She was always in need of me.  I took on that role without hesitation.  I cried a lot, and I stressed a lot.  I took a LOT of Prilosec.  Single mom life.  I can’t even stress how hard this is, but most of us take it on without question.  We just don’t.  Do we have a choice?  (well- maybe some do, but the choice was clear for me)

This month has brought on new challenges and new things.  I took them on, and I am dealing with it as I always have.  Do I collapse in to bed at night?  YEP.  I get a lot done, and then I really do.  I sob on and off, at random times for random reasons.  These times are much less than they used to be.  This autism thing is an emotional roller coaster.  You have to have some thick skin for this…and I hope mine has grown to be that way.   Just when I think it’s going good…autism SMACKS me in the face and brings on a whole new challenge.

When you ask how I do it…I don’t really ever think of how I do it.  I just do, and so would most of you. And, no…I do not want to teach autistic kids.  No offense, but I get enough of that at home.    

Bring it on autism…I am about ready to buy a suit of armor.

(Now do you see a good reason for ART?)

Once again, I am preparing myself, and Phoebe, for some big changes.  Phoebe has behaviors.  Really bad behaviors.  (and I mean REALLY bad) Can she help it? Does she like doing these things?  Who knows.  The bottom line is she can’t do these things around school mates.  I understand that.  Do I like it?  Not at all. Have I learned in the last 13 years of her life that the things I hate the most, are usually the things I can change the least?  Yep.  This is the story of my life.  I so wish Phoebe could sit in a class and do reading, writing, math and science.  I do.  It’s my least favorite feeling in the world.  I have a child with behavioral problems.  You hope to raise polite, polished, somewhat smart, happy person.  I am doing some of that, but she is anything but polite and polished.  I have accepted autism, and PDD-NOS, and behaviors, but I fricking hate them.  I REALLY do.

A long time ago, I gave up on the idea of graduation, graduation parties, and that big old DIPLOMA.  At this point…WHO CARES.  I am just going to be happy if she can get through the day without saying, “you’re a shit”, or “I hate you” to any of her family, or her teachers.  (or throwing chairs, desks, pencils, etc.- you get it)  Yes, Phoebe is autistic, but that is just the beginning.  She doesn’t understand consequences.  She doesn’t get subtle hints.  She doesn’t get that if you say something horrible…it hurts someones feelings.  I DO.  I understand that she is going to miss out on things, because of her disability.  (As much as I don’t want to think about it)  The bottom line is…if she’s happy, I’m happy.  If giving her less constraints means more happiness and better behaviors.  Let’s go for it.

Because eventually, she’ll change things up and we will be doing this again.  We will again make  changes and do what makes her happy (and less apt to make her have behaviors).  I’ll keep doing it…until I collapse.

That is my job.

MOM.

I am taking on more and more.  Everyday, I add something on, and say to myself..”it’s fine.”  I have 16 credits this semester.  Way more than I ever would want, but feel as though I need to get done with my certification sooner than later.  I need to get a job doing what I love, and time is not on my side.  So, I’ll take on more and more.  Oh wait…let’s add in the parenting part.  Each day, there are things that I must do as a parent, and then I add on something new.  I add on soccer practice, and soccer games.  I add on homework for Brendan, and help with projects.  “It’s fine.”  (these are things I like) I add on daughter/son and mom time, homework for him, social skills help for her, bathing, brushing teeth, feeding, etc. .  Oh- and homework for me.  Now, let’s add autism.  Each day brings something new, and something different. “IT’S FINE.” I am not really sure what that will be, but I know it when it happens.   I can’t anticipate these things.  It’s like a puzzle (imagine that).  It could be screaming for no reason, picking, no socks, or more socks, and FOOD, FOOD, FOOD!!  The never ending battle with food.

There are days I just want to SCREAM at the newest autism-ness we have started.  I guess I am that eternal optimist hoping that one week she will just be “better” and I’ll be able to say…”Wow, this week was easy!”   “I THINK I am fine.” I hate to say it, but each week seems to be getting harder.  Is it puberty?  Or is it autism, or both?  (I hope its the first)  Or is it me? (Well- that can’t be!)

Somedays, I teeter on the fact that I might go right over that edge if one more thing is added.  Just one.  But, then again…I’m pretty sure I’ll be fine. 🙂 (at least I hope)