Sunday, December 25, 2016

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."

Monday, November 14, 2016

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.😺

Friday, October 14, 2016

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)

Saturday, September 10, 2016

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 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. :)

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 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'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."