Wednesday, April 12, 2017

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!)



Sunday, March 19, 2017

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.

Sunday, February 19, 2017

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?




Sunday, January 29, 2017

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.



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.😺


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.😺