Cleaning out

This weekend I started cleaning out files.  Phoebe's files.  I cleaned out a file that was no smaller than the size of a stack of about 20 sunday papers.  (a couple feet deep)  From the time Phoebe was 3 and 1/2 years old a paper trail started.  She was developmentally delayed, or ADHD, or asthmatic, and always on the end of the reports...chubby.

In her Head Start preschool, they decided to do evaluations of a preschooler that didn't fit in the mold of what was considered "normal."  Even doing an "autism" evaluation stating that it didn't seem as though she had ASD because she looked directly at the person testing and asked, "WHY ARE YOU HERE?" (Knowing her now--this is pretty funny)  Well, she qualified for speech and language help, physical therapy and a developmentally delayed pre-school through Beaumont Hospital.  I double dipped on the help, as I didn't think what the school could provide was enough.  They agreed.  Starting at 3 and 1/2, Phoebe went to Beaumont Hospital 3 days per week for preschool, and 3 days a week for Speech and Language.  All the while, I am bringing baby Brendan (still in his carseat) along for the ride.  Eventually, she did Occupational therapy for low muscle tone, and various other muscular issues, and a social skills group to help with her socialization. We were at the hospital therapy no less than 4 days per week.  

Can you imagine the paperwork?  I looked through every piece this past weekend...reliving the panic of a mother who was figuring out just how hard this could end up being.  I remember the feeling of "Why me?  Why her? What did we do to deserve this?" Then I decided...let's look how far this child has come.  Let's put a positive spin on this.  She had various speech issues which made her speech impossible to decipher.  Now, I'd literally like to put a sock in it sometimes.  She never stops and is perfectly understandable.  (She's really understandable when she swears in public- just to annoy me)  In fact her speech is farther along than her actual understanding.  She couldn't hold a pencil, and her writing was horrible.  Now, she can write, type and use technology faster than anyone I know.  My settings on my devices are constantly changed.

Each year starting in Kindergarten Phoebe had an IEP.  There were 2 per year, not including if we decided to do extra testing or add something to her existing IEP.  Today, she's in 9th grade (technically).  That's 8 years of IEP's (Individualized Education Plans) that are no less than 30 pages long.  The paperwork is unbelievable.

You know what I did?  I shredded everything except for the last 3 years.  I shredded it.  I put it in the past and decided that this is where we start.  Today, we look at where she is and what she can accomplish.  I will not dwell on what was.  I will not look and feel sorry for myself, or feel sorry for her.  Those are emotions I would like to never look back at again.

I will continue to see how far she can go, and in 10 years I'll shred this paperwork too.

Cough Cough Cough

I have a new found respect for Phoebe after having a nagging, respiratory, bronchitis-like cough for the last 2 weeks. It's wearing on my nerves, and makes me tired and grumpy.  Phoebe spent the first 2 years of her young life on a nebulizer, oral steroids, decongestants, etc. etc.  She even had RSV at eleven months old and spent the night in the hospital. (With me right next to her bed)  This child never cried or got cranky...she was just Phoebe.  Happiest baby ever.  Of course, when she had a temp she was slightly more lethargic, but she always had a smile on her face.  Do I??  Um...let's just say that's a big NO.  I spent countless nights in her room, standing over her crib, counting the number of breaths she took.  Do I give a treatment or don't I?  She couldn't talk for herself.  She couldn't say..."Hey mom! I am having a hard time breathing..can you get me some meds?"   So, I was "ON GUARD" 24 hours a day,  7 days a week.   I am not exaggerating when I say when we would be with someone with a sniffle, Phoebe would have it within a week, and be on breathing treatments the next day.  She was a mess!  Ok, fine...I WAS A MESS.  She was just, Phoebe.  Happy, little Phoebe.

Finally, she saw an allergist and was put on a more daily med, and did eventually grow out of it.  She was around 3-years-old.  

At 3-years-old, we started to see more delays than ever.  This is when the autism/ADHD, whatever-you-call-it diagnosis started.  (And, I found out I was pregnant with Brendan)

Looking back, this hasn't been an easy ride for you Phoebe...and I give you a ton of credit for how far you have come.  Hopefully, you won't get this nasty cold mom has.

(So, stop drinking out of my glass of water would you!?)

How do you parent?

Here's the question...do you raise a child that's 14 years-old (with autism/PDD-NOS) like a "typical" 14-year-old, or do you raise her like the 6-year-old she's more mentally like?  This particular child can do some things that 14-year-olds can.  But, then again there are many things she can't.  I am finding as time goes on, that this seems to be getting harder and harder to decipher.  I continually expect certain things, and then become frustrated when they don't happen.  However, sometimes I become completely blown away by the things I didn't expect, and do happen.  Does that make sense??  I'm exhausted.  Did I mention that?  (Pretty sure most parents are)

I want independence for her, and am forcing myself to try and get her to do these independent type things.  It's not easy.  It's a messy messy situation in all aspects of our house.  She has ADHD, and impulse issues.  Her room is messy, her hair is messy, her body can be messy.  I'm beginning to let all this go.  I can't keep up, and does it really matter?  No.  It doesn't.  If I were a rich-girl, I would have a maid, a cook, and someone who could help me ALWAYS focus on the important stuff.  What's important in her life? She needs to socialize, always.  She needs to know how to socialize properly...mostly.  She has to be able to take care of herself...sometimes.  She needs...to be happy.  Ok,  I know...she's a teenager, and happiness isn't always on the menu.  How do I know what is autism, what is teenager annoying-ness, and what is general disability?  I don't...nor will I. (Amazing- reads text message in 10 seconds from across the table.  Annoying- finishes my sentences before I can get them out) I will try and focus on the important stuff.  Happiness, independence, and socialization.

So to answer my own question...I don't know, and I won't know.  I will fumble along the way I have been and expect the unexpected.  I'll be exhausted, and I'll have some totally frustrating days.  Then that one small step forward will give me uplifting, and hopeful days.

Thank you to all my friends and family who help me,  put up and stand by our "strange" family.

Another IEP

Tomorrow is another IEP.  This is the Individualized Education Plan for those of you who don't know.  To date, Phoebe has had at least 20.  Twice per year, and updates as needed.   I have learned so much about the process over the years, as a parent.  There have been good ones, bad ones, and everything in between.  I have sobbed, laughed, sworn, and nearly thrown up.  No matter if they are good or bad, they are never easy to take.  While the teachers do their best to inform you about your child's positives....the whole process is really about what your child can't do.  Don't get me wrong, this is a necessary process, and what's best for your special needs child is usually figured out.   

As the PARENT, there is inherent guilt.  Why does my child lay on the floor and scream?  Why does she pick her skin until she bleeds?  Why does she tell people she's going to bitch slap them?  (Yes...it's true)  The list is endless.  I have NO idea why she does these things, and I have slowly learned over the years to not take it personally.  It's so hard.  I used to think I was a horrible parent.  I really did!!  I thought I must have done something wrong.  I didn't work, that was it.  I didn't breast feed her long enough, that was it.  I didn't give her enough vegetables, or vitamins.  You name it, I felt it.  Finally, as her mother I had to accept that she was different.  She was autistic, bi-polar, PDD-NOS, or whatever you want to call it.  She wasn't going to do things the way other kids did, and that was a hard thing to swallow.  I wasn't going to be able to brag about her dance abilities, or her test scores.  (nor would I have a sticker that said anything about my honor student)   I did get used to this.  I won't say it got easier, but I did/do know what to expect when IEP time comes around.  

I put my faith in her team of teachers, consultants, social workers, therapists, and everyone else involved in her education.  I go with my gut instincts and try to give them anything and everything they can use to help her at school.  We work as a team to provide her with something that works for her. I know what it takes to raise her--so I'm guessing teaching her is quite challenging.  (and thank you for those who do, and try to) Sometimes this whole thing takes some creativity.   

She is quite the unique child.  But aren't they all? 

Tomorrow is IEP number 21.  Let's see what we can come up with. 

Things change

This year has been full of ups and downs.  In the fall, my 14-year-old started high school.  Well, technically she started high school, and stayed half time at our local school for special needs students.  Within a few short weeks, we (including her full "team") knew this was not going to work.  300 kids pile in to the cafeteria at the high school to eat lunch right along side with Phoebe.  She freaked out.  I don't really blame her.  This can be overwhelming for most people.  This was a breaking point for me.  I can't fight the fight anymore.  While I really want my daughter to be able to write a paper, do algebraic problems, conduct a science experiment and be in the high school musical, this is not reasonable.  These exact things cause the most anxiety in her, and myself.  She has meltdowns, and then I have meltdowns.  (That is not pretty)  She doesn't like these academic restrictions put on her.  She has a hard time processing these things.  Do I think she is smart??  OF COURSE I do.  She is smart in ways that most schools don't measure.

I have stated what Phoebe's strengths are.  She can be a great helper for adults and little children.  She loves to do laundry, write lists, and grocery shop.  She loves to tell me when I am going the wrong way, or that I forgot my blinker in the turn lane.  She can name all the people in my address book, and where they live, how many kids and pets they have.  Sometimes she can even remember a story about them that I might have told.  She LOVES to boss people around (her way of controlling life).

In October, I switched her over to Millet Learning Center full-time.  I gave in to the fact that she won't do math, and won't really do writing.  I embraced her strengths, and love the fact that they do too.  She will still do things that aren't appropriate and seek attention in the wrong manner, but they get it.  They understand Phoebe.  She will still struggle at times, and I'm prepared for that.  I just didn't have the energy to fight the battle anymore.  She's happier, and I'm happier.  She still gets a "school" experience but in a place that is easier for her, and easier for me.

Thank you for all that help our "special" children.  It's not easy.  We know. (We live with it)

The life

Yes, I read it.  I know the story of the woman who tried to commit suicide, and kill her autistic daughter at the same time.  I've actually spoken to her a few times in the past, as she had a lot of information to share.  I will not comment, or judge on what she has done.  I life the life.  I am as a friend said..."one chapter away from that."  I am not saying there is horrible violence in my house, but I have made it so it isn't that way. (As best I can)  Can there be violence?  Yes.  Have I been hit?  Yes.  Does it hurt?  In every way.   I put little restraints on my autistic child.  I make her environment as easy on her as possible.  If I challenge that...I usually pay the price.  (and so does my son)   The form of payment for us is usually a major meltdown with breaking things, throwing things, and occasionally hitting.  It hasn't happened a lot, but it happens.  I hold my breath every day when she leaves for school that she will A) follow the rules, B) not hit or hurt someone, and C) make it through the 8 hour day with no meltdowns or calls to me.  After 10 years of living it, it has become our "normal."  

I used to spend my time trying to make her be less rigid with schedule, and less anxious about things.  Then I became so overwhelmed, that I just decided to make life easier for all of us.  We schedule our days to the point where I only need to let her know ahead of time if something is different for us, in our daily routine.  This could be soccer practice for my son, a meeting, a babysitter coming, or just an errand needing to be run.  If I don't, we pay the price.  I live the life.  It's exhausting as a single parent.  It's exhausting as a mother.  It's exhausting as a brother.  Autism is exhausting, and overwhelming.  I can't even imagine how my daughter feels on a daily basis facing these challenges.

This brings up a whole other issue of what will happen.  What will happen to her when she is grown? WHERE will she go?  I want her to live a full life filled with happiness and without anxst.  But, I seriously doubt this child will ever be able to be on her own.  I can see the writing on the wall with this one.  Where are the homes for adults with autism/PDD-NOS?  They do make it to adulthood and then what?  I'm assuming she will outlive her parents, and then what will happen?  What are we doing as a society to fix this?   The stats are growing each year, and something has to be done.

Yes, I read it.  I can sympathize with her.  I really can.  I live the life.

The end of summer

Lots of the time...I can joke, and laugh about the things that happen during my autism-filled life.  The end of summer is not one of those times.  Anxiety begins to set in for Phoebe.  She can't control any of those things that she needs to have control of.  What time will the bus pick her up?  Who will be there at school waiting for her?  Will she know where to go?  What are the names of the kids in her class?  What time does she leave school?  All of these seem trivial and easy to us, but for Phoebe this is life.  I don't have the answers for her yet...and this causes a lot of turmoil at home.  When Phoebe has anxiety all of her worst qualities come out.  She wants to eat all day long, sleep days away, and stay up at night.  She wants to follow me around to make sure I am not leaving, or possibly finding out any information that she may need.   It's these days that I wonder how I will ever get through all of this.  Even the tranquility of heading north to the nice beach in Traverse City does nothing but cause her uncertainty and anguish.  She only wants to know when we will be heading back home to her familiar surroundings such as: her bed, her food pantry, her bathtub, and her room (with room darkening shades and a loud fan, so she can shut the world out).

Her summer school program lasted 4 weeks.  4 weeks.  That's the only time she was happy and so excited.  I don't want to sound selfish, but 4 weeks?  I'd be willing to stand in front of anyone and put up a really good case on why year round school for this type of special needs is ESSENTIAL.  Even if it's a summer camp, summer retreat, or summer DAYCARE.  I don't care what you call it--it has to be done.   Our school system does not have the funds to provide for any more time in the summer for these autistic children.  If I had endless funds...I would provide this for her.  I seriously would!  Summer couldn't be any worse for them.  (Or maybe I should say...couldn't be any worse for us)

With anxiety comes frustration.  (For both of us)  I really want to love summer days and nights, and having fun, but at this point I'm just counting the days.  I need my Phoebe back.  The one who loves to go to her schools, and loves to get up, get dressed and be ready for her days!

The Phoebe that has a smile on her face.
I want that back.