In two weeks, my girl will turn 18.  Most parents of children turning 18-years-old have many exciting things happening on the horizon.  There can be graduation and decisions about college.  Its a time of new independence.  It’s an age that is a big deal to kids.  I remember turning 18, and it was amazing. I was a freshman at Michigan State.  I had graduated from high school, and did well enough to get in to a Big Ten School.  I was ready to venture out and meet new people and be social.  I had the ideal young adult life.  I got to make my own decisions about what I would eat, and wear.  I decided which classes I went to (and didn’t go to-sorry Mom).  I had to manage my own spending money.  I had to make time for studying.  I was on my own at school.  I was reliant on my parents for money and support when I needed it, but they did not live with me or come see me EVERY weekend.  They were amazing parents and I did well on my own.  (At least I think I did)  It started the beginning of my adult life.  My own life.

For parents of children with special needs it’s slightly different. It’s also a time of exciting things but also of severe worry and anxiety.  At 18, children are considered “adults.”  For us, this is not usually true.  Phoebe can’t make decisions about her life, and I’m not so sure she ever will.  I have spent the better part of a year getting her services through our local Community Mental Health office.  I also have been getting her ready for a transition to a post-secondary school where she will learn job skills, and how to take better care of herself.  I also am starting the process of getting Social Security Disability for her.  This is no small task, and has included hours of gathering information from her 18 years of life.  This process wants every doctor and hospital she has been to.  This also means, every therapy, medication, and every teacher, school and team member that has worked with her.  Most of you would be able to do that using a piece of paper.  I have a file folder that is at least 4 inches thick.  That is not an exaggeration.  The final task is to obtain Guardianship of Phoebe when she turns 18.  I will be able to make decisions for her, as I always have.  I have to PROVE that she is incapable of doing that.  I have to prove she has a disability, and that I will be her guardian forever.  I’m pretty sure the wrinkles on my face prove that.

I can’t say this first 18 years has been easy. It’s more than I ever thought I would be dealing with when having kids.  I’d love to say I see the next 18 as being much easier, but that would be a lie.  My only hope is that Phoebe will be a happy, healthy adult.

Isn’t that what all parents want?

Sometimes I cry.
Sometimes I wish things were different.
Sometimes I want to be alone.
Sometimes I am lonely.
Sometimes I am stressed so badly it hurts.
Sometimes I sleep, because thats how I cope.
Sometimes I eat, because that is something I control.
Sometimes I wish we could go back in time.
Sometimes, I don’t want to go to another meeting, or another appointment.
Sometimes I want to run away.

Sometimes I smile at little things.
Sometimes I cry because we have come a long way.
Sometimes I am thankful for what I do have.
Sometimes I know that I am a strong woman.
Sometimes, I know she wouldn’t be where she is without me.
Sometimes I talk to everyone.
Sometimes I pray that we stay healthy.
Sometimes I am amazed at others.
Sometimes I remember all the good things.
Sometimes, I know my children are amazing.
Sometimes I know I am everything to them.

Sometimes,  I have good days, and sometimes I have bad days.
Sometimes I realize that things aren’t as bad as they seem.

Sometimes, just sometimes.

While waiting at the University of Michigan Hospital Dentistry clinic a few weeks ago, I looked around at the number of families who were using their services.  All families that seemingly had a child, or adult, with some sort of disability.  I smiled at a few of them, trying to show that I knew some of what they were experiencing.  I began to think about how different my smiles have become over the last 17-20 years.  When you are planning to have a family, or getting to an age where having a child sounds like something you might like to do, you begin to notice families with children.  You notice babies.  You notice toddlers.  You smile.  That smile that says, “Awwww.”  I still do this.  I still see babies and smile that smile.  Then, there were the smiles at the parents of children with disabilities.  If you even smiled at all.  Some people just look away, because they aren’t sure how to deal with something they know nothing about.  You smiled that smile of sorrow.  You felt bad for them, you didn’t know how they could manage.  You thought, “That will never be me.”  For some of you that is indeed true.

Now, as I look around and see so many children with various disabilities, I smile that smile of knowing.  I know what it’s like to have a child with a disability (or disabilities).  I know for a fact that those parents are tired, and dealing with things most people can’t even imagine.  I smile that, “I get it” smile.  In fact, not long ago in a local store, a woman was doing everything she could to keep her son next to her.  He seemed non-verbal.  He was young, about 6.  He turned around and hugged me.  His mom about lost her lunch.  I laughed and said, “THANK-YOU! How are you? Are you shopping?”  His mom smiled.  She smiled that thank-you smile.  I told her that I have a teenage daughter with autism, and it didn’t bother me one bit that he was circling us and flapping (it was a guess that it was autism- I assumed, and she confirmed). She thanked me and talked for a bit, and we entertained him until she got done with her purchase.  She walked away and smiled.

I don’t get every disability by any means.  I do get that as a parent of a child with a disability, every day is a challenge.  For that reason, I smile at the parents.  I smile at the children.  I smile.  I smiled at everyone that day at the University of Michigan, because a smile goes a long way.

Merry Christmas to everyone, and in the spirit of our favorite movie, ELF…

“I LOVE smiling…smiling’s my favorite.”

This post may not be polite.  It may not be pretty.  It certainly isn’t the light hearted side of autism that I can usually find in my heart.   When Phoebe was 9-years-old and started her period, I took her to a Pediatric Gynecologist.  While at this doctors office, a social worker came in to speak to me.  I thought this was odd.  I wasn’t an uneducated person.  I knew what getting her period meant.  I was prepared to help her take care of it.  What I wasn’t prepared for was what she said.  She wanted to know about the “other” people in her life.  (Teachers, aides, friends, etc.)  Any person who could possibly “take advantage” of a person with Phoebe’s intellect.  At that moment, I thought to myself that this situation would be dealt with later.  I had to worry about other things at that time.  Almost 9 years later, after birth control was too much of a pain, we have come to a crossroads.  What would you do?

Your 17-year-old daughter has hormones.  She likes boys.  She would like to be married someday, or have a boyfriend, or a kitten.  She’s not quiet sure.  When she tries to deal with her own period, it resembles something slightly like a murder scene.  (Told you it wouldn’t be pretty) She’s annoyed by pads because they are scratchy and uncomfortable, and can’t use tampons.  She has to be reminded to take care of it.  EVERY time.  This child is not mentally capable of taking care of herself in many ways.  Now what?  Do you take her and get her an IUD, or an implant?  Or, do you wait a few months until she’s 18, and have her tubes tied?   Sounds like a simple answer.  Right?

Now, go back to when you had this baby girl, and you thought of all the wonderful things she would do in her life.  You have hopes for her.  You want her to go to college, or find her true passion.  You would like to see her married and have children.  These ideas slowly change as you discover that she will be dealing with disabilities.  These disabilities, which take away most of these wishes.  The worst being that you have to decide whether or not she can have a baby.  The worst decision you ever have to make about your ONLY daughter.

I’m an educated woman.  I know the answer, and I know what is right.  I will do what I have to, and I’m convinced that Phoebe will live a happy, full life.  She has come a long way, and I am very proud of her.  I have made my peace with it. When I simply asked her if she would like to have a baby someday, she replied, “Uh- NO.”  Not sure I know what she truly thinks or knows, but as her mother and guardian…I will do what is right.

Maybe I’ll get her a kitten.😺

It’s fall.  It’s doing all the same things we do every year.  Completing the routine, so that Phoebes world stays somewhat the same.  Pumpkins, Trick-or-Treating, Homecoming, football, etc.  I have started to look back on 13 years of school, and 13 years of meetings and changes.  

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)

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

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. 

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)

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.