My fault.

It's my fault, that I don't go to every soccer practice and every game that my son has, or leave when she has had enough (at that EXACT moment).  It's also my fault that I don't get a slurpee every day.  It's my fault that I tell her, "NO" when she has had enough food.  It's also my fault that I turn down the sound to Dora The Explorer and Blues Clues.   According to Phoebe, it's my fault I make her wear a bra, wash her hair, wear deodorant, and brush those TEETH!!!  I am certainly at fault for making her wear t-shirts in the summer and not sweatshirts, and also making her wear sweatshirts in the winter and not t-shirts. I am at fault, and "THE WORST MOTHER EVER" for allowing her to buy gum in the check-out lane if she has behaved as expected, and not cheez-its, bottled water, a slurpee, beef-jerky, skittles or life-savers gummies.  (Thanks grocery stores, by the way)  Besides these things, I am also at fault for telling her she can't have my phone for the 400th time and text people "hi, or sdfakjslhfk," I realize that a lot of this is teenage behavior, but most of it is autistic traits.  These are daily activities, and I find myself saying no a lot of the time.

I'm also at fault for not accepting that the first school district she attended said she didn't qualify for speech and language therapy, then taking her to Beaumont Hospital and getting a 35-page report on the things she needed help with.  My fault I drove her 3 days a week to 3-years of intense Speech and Language Therapy.  It's my fault that I didn't accept, "ADHD" as a diagnoses.  It's my fault that I took her to Psychologists, Neurologists, Geneticists, Early Childhood Developmentally Delayed Preschool and playgroups, and Occupation therapists to make sure she was the best she could be.  I know it's my fault that I have sat through countless IEP's, behavioral testing, doctors appointments and surgeries to see that she is getting the best care possible.  Now, I'm working to set her up for the rest of her life, and I know that will be my fault.  My fault.

It's my fault that I have been working hard to be a good mother, no matter what her disability.  It's my fault she is mad at me, because I want what is best for her.  It's my fault she has become the young woman she is.
I'll take that.
Most days anyway.

Irritability and control.

The autism in this house has a control issue.  There is need to control situations so that "autism world" is predictable and manageable.  Phoebe has learned to say the right things, react a certain way when situations arise.  Her training in school and various therapies have taught her this.  Phoebe's autism is a different kind of autism than what you would typically hear about.  While at Yale Autism Clinic, the doctors were perplexed by her.  They said to me, "She is autistic, but she's different.  She is verbally superior to most, but doesn't understand a lot of what she is saying.  She's not classically autistic, or high-functioning autistic.  She's in the middle.  Sort-of."   I thought that was great.  I was overjoyed to hear the news, until another doctor told me that she would classify as PDD-NOS (Pervasive Developmental Disorder-Not otherwise specified).  This meant that there wasn't a lot of research on the disorder, as each person with it is so different.  Great.

Phoebe takes some social cues from me, and will react in a similar fashion. If I cry, she cries.  If I yell, she yells, etc.  When she can't get her cues from me, she will watch TV, and hear sayings or read them on Facebook.  She also will do what others are doing if she is close to them.  She has slang in her language (dude, ain't, etc.).  She will say things for a reaction, and she's is really good at behavioral manipulation (and it works).  She DOES NOT care if she gets positive or negative attention.  She just wants it. 

The last few years have been going great, and we got a great new Psychiatrist.  I decided that we needed to address her weight gain.  Phoebe is on high doses of anxiety and mood medications.  This last few weeks I decided to lower the mood medication, to help with weight.  What a mistake.  I have not lived with her like this for a while, and it wasn't pretty.  I had forgotten what her true autism was like.  Her anxiety was horrible. She kept me up all night when it stormed.  She followed me around on the weekend, yelling at me, and cursing.  She begged me to take her to Meijer and then stood in front of me at the store, blocking my view, and yelling that she wanted to leave (making a scene).  She had a screaming, yelling, throwing meltdown in her bedroom when she said she was tired and went to bed (I didn't even say anything).  She cried and screamed for 20 minutes after finding out we weren't taking her brother to soccer practice.  At his soccer game, she screamed and told me I was a bitch for asking if she wanted her water at the game, and then cried at the game when I wouldn't walk to the car to get it (as the game started).  She was agitated at everything and everyone.  I called her a ticking time-bomb of emotions.  After one week, I gave up.  I called the doctor crying.  We immediately went back to the old meds.  It's still wearing off, but I see glimpses of the old Phoebe back now. After dropping her off at daycare today, I cried myself all the way to work.  I can't even explain why. I was so tired, and irritable.  

Tonight, we made a trip to Target for Easter supplies.  I was leery.  I didn't give us any expectations.  I let her lead.  It was good.  No yelling, just our normal go to the back and make our way to the front and leave.  We made it 25 minutes.

No irritability.  

Baby steps (I hear snoring in her room as I type!)

Fighting the system.

In the last year, I have done more for Phoebe than ever before.  I thought the first few years of her life were difficult with asthma and illness, but that doesn't hold a candle to this.  I have been to at least 25 appointments since June of last year.  That doesn't count regular doctors appointments (6 to the dentist alone) and ER visits that my mom helped with.  Phoebe and I sat with a woman to do an intake at our local Community Mental Health Department that had never dealt with Autism or PDD-NOS.  She didn't understand Emotional Impairments, and didn't understand anxiety.  She told Phoebe the appointment would last HOURS, and that she should be patient.  I shook my head.  I finally told her to call me and we could finish.  It was the most ridiculous experience.  I was proud of Phoebe for being able to control herself for an hour, when all I wanted her to do was freak out, so we could leave.  I then went to an "autism" evaluation that had a young lady asking Phoebe questions like, "Phoebe, when you were young did you look at people when they entered the room?"  About mid-way through this "evaluation" I stopped her.  I handed her the Yale Autism Clinic evaluation done when Phoebe was in 4th grade.  It is 35 plus pages about Phoebe's Autism/PDD-NOS diagnosis.  I said to her nicely, "We are leaving, and if you have any other concerns you can call me."  Phoebe said, "YEAH...LET'S GO."   I am not naturally an angry person.  I usually give people the benefit of the doubt.  This whole process has me doubting everything.

I am in the literal fight of my life to prove she needs me as her guardian.  I will attend a Psychological evaluation that the court orders.  My mind immediately goes to the thought of why ANYONE would want to do this if it wasn't necessary.  Are there people who try to get guardianship that's not warranted?  I can't imagine (but am sure there are).   I will get an Guardian-ad-litem, because the court wants to make sure she is what I say she is.  I can't wait for that person to come over.  I'm certain Phoebe will tell them to get out in her "subtle" way.  I have made about 50 phone calls to departments about the fact she is being denied CMHS services starting in April, because certain paperwork was not filed.  (which it was)  (Thank god for my case worker, who is the nicest person ever) Next up is Social Security Disability.  I can't imagine what that will be like. That was an hour phone call, to which then the person told me to call back April 1st and the process would be easier, because she will have been 18 for one month and considered an adult.  (With clenched teeth, I smiled and said ok)

Now, you may think this is a lot for a Single Mom.  It's a lot for ANY Mom/family. It certainly is a lot for me.  I am a teacher that also works about 50-60 hours per week.  (That's right, I come home and do work)  The system wants me to fail.  They want me to give up.  I feel like every step is a test to see if I can withstand the process.  I have to admit, it might be easier to give up.  I'm exhausted most of the time.  I yell more. I've been more sick than ever this school year.   However, I can't do that to this family.  Phoebe NEEDS these services.  SHE is the reason these services exist, right?  I'll keep fighting and calling, and doing all these appointments with a tense smile because she needs it.  We need it.  She has to have some sort of a happy future.  She deserves that.

EVERYONE deserves a happy future - disability (special needs) or not.  I'm ready to fight.

18.

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...

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.

A Smile

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."

Your only daughter.

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.😺

Your only daughter.

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.😺

13 years of meetings.

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.  

The changes have not only come from Phoebe, but from me as well.  Phoebe went from being the cute little developmentally delayed, "big" baby that would do things late to a child needing a lot of help at school and in life.  During her first IEP at school, I cried and cried. (I'm sure they thought I was crazy)  I am not sure if I cried because my baby wasn't "typical", or because they all smiled at me with these HUGE smiles that made me feel inadequate as a mom.   I took on that role.  I got sad, and angry that they actually thought I did something wrong.  Did they think I was the reason she was like this?  Well, I thought so.   The meetings were so hard to sit through.  I did it, but I hated it.  It was awful to hear all the things your child could NOT do.  Just awful. 

I was just getting the hang of these meetings, when puberty set in.  The puberty year IEPs were the worst.  They made me cringe.  They were long, and grueling.  Her teachers, and staff did tons of work, and I know it wasn't easy, but being the mom was horrible.  Your expectations of ever having an average or typical child get thrown out.  I would cry and swear.  I would ask questions, and hate hearing the answers.  There is nothing worse than hearing that your child is THAT child.  I had to accept it.  I had to accept she had this disability (or disabilities).  This was going to be a life-long thing.   I had a lot of thinking to do., and a huge adjustment was needed on my part.  It took a long time.  I put on a happy face.   I slept a lot.  I tried to act like it was all going to be OK.  I cried, and wondered how had this all happened.  

I had to think about the future when I really didn't want to.  Then I remembered, this isn't really about me.  It's about her.  I have to do what is best for her and get over the fact that I am grieving the "loss" of a typical child.  A child I never had.  I was given this child, and I better make her life good.  That is what a mom has to do.  She deserves that.  Once my thinking changed, it became a little easier.  She will have a good life after school.  A life with me, and then maybe a life on her own with some help.  

Now, she has the right team, and I can see a good future for her.  Nope, it isn't a scholarship and college at my alma-mater, but it is going to be fun for her.  Job skills training, social-skills training, and all the things you need to succeed.  (Including meeting lots of new friends!)

Thank-you to all those educators who helped Phoebe along the way.  I apologize for my tears, and my swearing in those meetings.  (Sort of)  Here's to the next set of meetings in post-secondary school! (I'll hold the tears)

Senior Year.

Senior year has started for Phoebe.  She has her amazing team, and she will continue to follow the same schedule she has for the last 2 years.  Senior.  For most, that has a special sound to it.  It means, the last of everything high school.  For some, it means college applications and visits. It means maturity, growing-up, and moving on to new and better things. It means graduation.  For Phoebe, some of this is true, however most is not.  We did not do any college visits. There will be no diploma for her.  She will receive a certificate of completion.  This is how it works for kids in this particular special program.  Phoebe will move on to a post-secondary school starting next year.  It will help continue to teach her life skills.  School has always been more of a social thing for Phoebe, so giving her less academics will come as a nice change.   Change, however is always a huge struggle for her.  She will be sad to leave what has become normal.  She will cry, melt-down, and make us pay for this at home.  We, as a family, know this.  We know her. We are just really happy that she has made it through, because I can't say it has been easy.

My amazing niece made Homecoming Court for her high school this year.  She and Phoebe are in the same grade, and have grown up together.  When we discussed Homecoming for Riley at home, Phoebe nodded and left the room.  Later, she came to me and said, "Mom, what does someone DO on Homecoming Court? How do you get ON it?"  I tried to explain that it's a group of people who have shown excellence in school, and represent great things in young people.  It's a vote among the students to get on it.  She said, "Then I should be on Homecoming Court."  I laughed.  (In a good way)  She has accomplished so much since her first 20 page report from William Beaumont Hospital, stating she had various speech issues, ADHD, etc.  She was in special pre-schools, speech therapy, OT, PT and social skills groups.  She took special classes, and did work at home.  She (WE) made it through puberty (sort-of), and finally found a program that fit.  Just in time.  For her, this has made her someone who has accomplished huge things.  HUGE.  While it's not exactly Homecoming Court things...it certainly is something to be proud of.  We sure are.  And based on the conversation...I think she is too.  We will have a great year. 

We are proud of you Phoebe, and we are proud of Riley.  You are amazing young ladies in your own way.  CLASS OF 2017. :)

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)

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

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."

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)

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.

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.  :)

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)

Closing of summer

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.  

Phoebe used to go shop all day long, and go to stores, and sit and eat lunch.  She would do day trips and was complacent to be with me, no matter what.   She would take long rides in the car and be perfectly happy.  She was the happiest, sweetest baby on earth.  Seriously!  Then puberty happened. Puberty is hard on everyone, but for kids with autism...it's a game changer.  It does more than just change the body, and emotions.  It changes everything.  For the last 6 plus years, her anxiety and fear of the world around us has been getting worse.  Things she can't control immobilize her.  The only way she can control her world is by bullying us in to doing what she wants.  (Only to avoid meltdowns) I finally got to see that this is not a way of being mean, but a way to control her environment.  It really hit me hard this summer, and it made me sad.  What kind of a brain does this to someone?  What goes on in there?  I can't imagine not being able to control those emotions on a daily basis.  Then I began to see a consistent theme.  Me.  (Those darn people at Yale were right)  I am her consistent.  I am the one that she looks to for a calming factor, and for the right thing to happen.  I am her answer to all questions.  I can talk her out of a meltdown, as long as I stay calm.  (This does not always happen, but I do my best- because as much as I want to be Wonder Woman...I am not)   As summer progresses, the anxiety gets worse.  The schedule is wrong, control gets less, and anxiety climbs.  Medications keep it pretty low, but nothing is full proof.  

I may not be able to do as much as some in the summer, and admittedly sometimes I do feel bad for myself.  However, there isn't anywhere else I would or should be.  She needs me. Or, maybe its the other way around. 

Either way, this is our summer.  I'll take what I can get.  

Doubt

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. :)

What if...

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.

With these struggles, my mind will wander to what life would have been like had Phoebe been born...well, normal.  (average- typical) It's not productive, but I do think it's natural to think this way.  Would she be playing sports?  Would she be a cheerleader?  Maybe.  Maybe not.   Then I come back around to thoughts that this child is amazing.  She doesn't play sports, but she certainly LOVES to watch them.  She loves Michigan State (who doesn't?), loves her Tigers (and all their names and stats- and sobbed when Austin Jackson left), loves the Lions, and simply loves most things Big Ten.  She has known the names in our family since she was 2 1/2 years old.  We would make lists of the names and she would point to them when we would ask.  She recognized everyone.  She'll remember where you live, your dogs name, your kids names, your spouses name, and whether you sleep alone or not. (Yes, that can be embarrassing)  She keeps me on schedule and on-task.  She never lets me forget anything.  She's an amazing big sister and makes sure her brother is well taken care of. She adores him.  

I don't know what the future holds for Phoebe.  Will she have boyfriends?  Get married?  Have children??  All doubtful.  However, she has proven me wrong before.  Her improvements this year are great, and I see her maturing slowly each month.  Even though she's difficult, and trying at most times...I'll take her.  She has made me realize that life isn't about all those things that didn't happen...it's about all the things that did. (and will)

Here's to you Phoebe.  My unique girl. 

You drive me crazy.  :) (I think that's normal?)