Monday, July 11, 2016

I'm Limited


Autism is limiting.  It's limiting for everyone who is closest to it.  I make a choice everyday to not do things that cause unnecessary anxiety and emotion in Phoebe.  I used to push the envelope with her, and it was good.  Now, I limit her outings to her favorite places, and only push it when I really have to.  It makes my life easier.  It makes her life easier.  I am not sure autism experts would agree with my philosophy, however they aren't doing this on their own, and I am.  They aren't living this...I am.  My whole family is.

The strangest part to all of this is how completely opposite I am to her.  I love social outings, and going to new places, and talking to new people.  I always did.  I love to shop, and go out to eat.  These exact things are Phoebe's LEAST favorite things to do.  She hates to go out to eat...as eating is just a function, and not a social event.  She hates crowds, exploring new places, and new people.  She will talk to new people if they are in her environment, but not at new places.  She doesn't like airplanes (it may tip over), or elevators, or escalators.  She doesn't like docks that move (that was a new one), or anything where her footing could be compromised.  She is unsure of the space she takes up.  She is comfortable however, with her family. She is comfortable with those people we see the most.  She will talk and talk to those people, asking the same questions and getting the same answers.  As annoying as this is, it serves a purpose.  Recently, I read an article that talked about how people with autism want to be a part of their community. When they ask the same questions over and over, they are trying to be a part of the conversation and be a part of the family or group.  It made sense once I read it, and now I don't find her questioning as annoying as I used to.  Her conversation skills are limited, and often times she is questioning from a script that she has learned.  I recognize it, but not everyone does.  She listens, and learns.  She learns scripts from those closest to her.  She swears, and uses slang.  She hears other teenagers say things, and repeats them.  Does she understand what they mean?  Sometimes.  Does she say them for a reaction?  ALL the time. Again, this is all part of being part of her family, and being part of the conversations.

We are both limited.  She goes daycare, and has a babysitter, however those are short lived breaks.  I am her mom, and I am the one who understands her the most.  I am the one who gets the maddest at her.  I am the one who pushes her to do her best.  I am the one who tries to get her to learn new things, and be more independent.  (Me and her fabulous teacher)  I am the one who takes the brunt of the behaviors, and the mood swings.  That shouldn't be on anyone else.

I am her mom, her limitations become mine.  Isn't that what motherhood is about?

"I've heard it said,
That people come into our lives
For a reason
Bringing something we must learn.
And we are led to those
Who help us most to grow if we let them.
And we help them in return.
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you."

(-For Good.  Wicked)





Tuesday, June 7, 2016

And with that...she's a Senior.

Tomorrow is the last day of Phoebe's Junior year.  In the fall, she will be a Senior.   She will not graduate with a degree, but she will get a certificate and move on to post-secondary school.  I'd like to say it feels like moments ago when I dropped her off at Kindergarten, but that would be a lie.  Every year has been a challenge of different sorts.  I was/am the eternal HELICOPTER mom.  I have had to be.  Her younger years were about her learning disabilities, social ineptitudes, her ADHD, and her general delays.  Her middle years were more about her emotional impairments, puberty, getting her behaviors under control, and the loss of friendships.   There were dozens of IEPS, behavioral meetings, doctors appointments, and yes... tears.  She was at a stand-still educationally.  Getting her emotions under control was our main focus the last few years.  Until we moved to Carrollton High School, that seemed like an impossible task.  Phoebe has had two of the best years ever.  She loves her teachers, and her teachers understand her, and her many disabilities.  We have an understanding that I want Phoebe to be able to function in the real world.  I don't care about Math, or Social studies.   We, as a team, are constantly working on appropriateness, and independence.  I have had very little interaction these past 2 years, and that is what seems strange.  With the right program and people, things happen.

Don't get me wrong, I will be sad when her high school career comes to an end.  I hate to see change for her, and wish she could stay there forever.  In the coming year, we will work on doing all the typical "Senior" year things...getting photos, going to dances, and having a big party.  (maybe not- depends on her mood)  We will embrace that she has come a long way from her mispronounced words in Pre-school (because of her numerous speech issues), to now when she uses terms I'm not so sure I know what they mean.  She will begin a new journey of becoming a working, functioning adult. (Gulp)

Maybe it's time I become one of those. :)

Good luck to my Senior girl. (photo of first day of kindergarten)

 summer before senior year

Saturday, April 30, 2016

The Norm

Today, Phoebe and I attended a fun fair for children and teens with autism.  At first, she did her normal thing of wanting to leave right away.  She was anxious, and unsure.  Anything new, and she's ready to retreat to something familiar.  She wanted to go home.  I didn't press her too much.  I asked if she wanted to walk around one-time and then leave.  She agreed.  We walked, and surveyed the situation.  She was quiet. (unusually quiet)  Then we saw a few of Phoebes friends, and she perked up slightly.  We did a few games, won a few prizes, and then she asked to leave.  She was quiet, she was calm.  I believe she was comfortable.  These people understood Phoebe.  These kids, and staff had been trained or told about kids and teens with autism.  They were friendly, and not judgmental.   It was nice to go somewhere and not feel tense.  WE weren't tense. 

I try really hard to not feel tense when I am out with Phoebe, but I do believe that sometimes it's natural.  She's not the normal 17-year-old girl.  She isn't shopping by herself, and driving herself to the store.  She's with me.  (ALL THE TIME)  Sometimes, her behavior can be unpredictable.  I know exactly which stores we can go to, and which we can not.  I know how long we can be at those stores before we have to leave.  This can avoid major meltdowns.  I know just how long she will look for something before her patience is too thin to continue.  I know she will NOT shop for clothing, unless it's easily accessible.  She will not search.   I have learned to mostly avoid being tense.  I have learned these spots.  It's not particularly fun, but I need to keep these kids fed, and clothed...it's essential.  This reigns true in all aspects of our lives.  She only has so much patience, and then she needs the familiar spot of her room, and her bed.

For today, she felt calm.  She felt at ease.  People understood who she was, and what being autistic is like.  Today felt..."normal."



Wednesday, March 2, 2016

Birthdays...17

Most of you have figured out that I am an emotional person.  I am sentimental.  (We can thank the Hazen genes for that one)  This Friday, March 4th is my daughters 17th birthday.  I can remember every birthday as well as the last.  I cry every year.  It's ridiculous.  I have watched so many things change, and yet just as many things stay the same.

We are in preparation for a birthday party.  A 17-year-old "autism" birthday party.  It will be short and sweet.  It will be at home.  We will have all the things kids have at their parties: presents, cake, food, candy, ice cream and singing.  However, over the years I have learned to listen to my child and her needs, not my own.  When Phoebe was 8, I decided to have a "Fashion Show" birthday.  I am an artsy person, and creative.  I wanted her birthday to be super unique and fun.  I needed to have all the kids have a blast.  I invited all her KNOTS buddies (a mentoring program at her elementary school).  We had 15 kids invited, and many parents. I prepped the basement for a runway, painting, and dress-up.  I had music, and cake and ice-cream.  It was adorable!  Phoebe did great....to start.  Thirty minutes in, we had done the runway show, and were trying to get it wrapped up and move on to presents.  I looked around and Phoebe was nowhere to be found.  I looked upstairs and she was sitting in her room all by herself.   She was overstimulated.  She shut-down.  I was crushed.  We finished out the party without her.  I hate to admit there were a few more birthday parties that I attempted to satisfy my creative, fun side.  She absolutely hated them.  In the end, I paid for it in meltdowns and disappointment.   We have done less and less as the years go on.  (Bowling, Delta Pool, etc.)  This year, I asked her what she wanted to do.  I gave her options.  She decided that she wanted to be home, and she decided who should come.

We have continued the tradition of treat-bags and treats for school, because that is what birthdays are for her.  She has the same reaction she had ten years ago when we put the treats together.  It's all about her.  We will celebrate her 17 years of life on Friday, and through the weekend.  I will still cry, because she's 17, and her birth is still as fresh in my mind as it was that day.  We will do it all on her terms...just like that day 17 years ago.  (Stubborn little girl)



Sunday, January 3, 2016

Does anxiety end?

I sit here ready for Christmas break to be over with mixed emotions.  I am not ready, because I love being home and getting organized and doing the things I used to do as a stay-at-home mom. However, each day of vacation brought a higher level of anxiety in our autism house.  I answered the same questions over and over again, and dealt with the anxiety as I have for the last 10 years.  Today, I am ready to go back to teaching my art kids and getting away from the same questions and the same emotions.

Whether you teach your kids about Santa or not, Phoebe has believed in him for the last 16 years.  He is not an entity that you can prove is real or not real.  He is what he is. I have explained Santa, and yet Phoebe just does not understand it.  He brings the presents...and that's it.  I explained Phoebe to her brother, and to their cousins this year as being "a sixteen-year-old body with an eight-year-old mind."  This helped Brendan immensely.  He finally understood why she was not getting the whole Santa idea.  She was so excited about Christmas that all the family events enjoying each other, eating and talking were all just anxiety-ridden activities.  She muddled through fairly well, with a schedule that we had come up with.  We had a few, "WHY ARE YOU LOOKING AT ME", and "I HATE YOU WOMAN" moments to name a few,  but overall there were no large meltdowns.  The week and half journey for her consisted of anxiety, and a lack of predictable schedule.  It's nearly torture for her, and many times she slept out of pure anxiety.  The world is a scary place when you don't know where you are going, or what you are doing next.  She also talks out of anxiety.  Her talking started at about 5:30 a.m.  Full sentences and discussion at 5:30 a.m. about, "What are we doing today", "Can I eat breakfast, and what's for dinner?"  I am so tired of discussions.  The same discussions recited over and over for the last 12 days.  Just tired. Literally.  I can't imagine what it is like to be inside that mind.  The mind of an autistic teenager.

Her script for the last part of this week was, "I don't want to go back to school", which comes from hearing that on Facebook, or from her brother.  However, she CAN'T WAIT to go back, and was ready for bed by 5 p.m. (and had her new backpack all ready)  She's excited for her schedule to get back to normal.

And, so am I.


Sunday, November 29, 2015

The PERFECT life

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.  :)


Sunday, October 25, 2015

Struggle

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)