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.