Changes

This post has taken me a while to write.  I will not bore you with the fact that I am dealing with a huge loss in my family.  My dad passed away a few weeks ago- and our family is experiencing the worst thing possible- death.  Most of you know that.  As devastating as it was for me, it was even harder for the autism in our family.  Most people know about death.  They can process it as much as possible, and learn to deal with it.  This isn't an easy concept for autism.  The tangible evidence is gone.  Where did it go?  The concept of illness, or heaven can not be easily explained, or shown on a piece of paper.  A social story doesn't do it.  I did not let her come to the funeral, because the overwhelming amount of people and sadness would have done her in.  Let's be honest, it did me in...and I'm not autistic.  (At least I don't think I am)

My child with autism follows me around- watching me for emotions she doesn't normally see, and then mimics these herself.  She cries when I cry.  She's not sure why, but she can sense that things are not the same.  I finally took her to my parents house, and let her see for herself that he was no longer there. However, his things are there, his car is there, and she wasn't convinced.  "MOM, his car is here. I checked, and his clothes are here." How do you explain that?  I did my best.

This is one of those things that will just take time to sink in.  Maybe she'll watch me and see that slowly each day I will get better, and act less depressed.  This will help her be less worried and make her world be "back to normal." Whatever that is.

Holiday time again

It's that time again.  The Holidays.  It's a weird time for my autistic kid.  She gets anxious, and undone with no school, and having so many unknowns makes her crazy.  Again, we plan and hope for the best.

What started as a way to make evenings easier at holiday time has turned in to a full on tradition.  When I first moved back to Saginaw, night time was the hardest for me.  I was alone, and unhappy.  It was the first Christmas without a husband to help, and the first holiday in my own house.  One crazy kid night, I decided that jammies, hot cocoa, and a ride in the car to look at Christmas lights was the answer.  While it was only about 20 minutes of quiet...it was a moment of peace for me.  We brought blankets, and listened to Christmas music.  The dog always came along.  At first, I was pushing them to get in the car, then after only a few short trips...we had a tradition.  Every year since then, Phoebe has asked the week of Thanksgiving about our "light trips." I was the one holding back thinking I didn't really want to get in the car and drive around, in the last couple years.  

Tonight, was the first of the many asks about the light trips.  I told her that there might not be many up yet, but she was insistent that we go. Brendan ran and got his jammies on, and Phoebe got the dog.  We hopped in our mini-van (how cliche) and off we went.  We did see a few lights, but not as many as we hoped.  Phoebe replied..."It might be early. We can go again in a few days."  And, both Brendan and I said..."YEP.  It's tradition."

So, here it is again.  The start of our trek to look at lights every other night.   If only life could go this smoothly.  :)

Happy Turkey Day!

Thoughts on this whole thing

Parenting is a challenge.  Parents all know that.  Most of us went in to the whole thing knowing this ahead of time.  Recently, my mom asked me..."Did you think you could ever have done this?" And, you know...I'm not sure I thought I could.  I know for a fact on one lonely day while waiting to move back to Saginaw, I sat in my living room thinking those exact thoughts.  "How am I going to do this?  How will I ever be able to be alone, and accomplish parenting and everything else?"  This among the typical sobs that I had then.  Not to mention the thoughts on never finding love again.  (that's a whole different blog)

I had a 3 year old, and a 5 1/2 year old when I moved here.  (old news- I know) That 3-year-old needed me as much as any baby, and the 5-year-old needed me even more with the addition of an autism diagnosis.  She was always in need of me.  I took on that role without hesitation.  I cried a lot, and I stressed a lot.  I took a LOT of Prilosec.  Single mom life.  I can't even stress how hard this is, but most of us take it on without question.  We just don't.  Do we have a choice?  (well- maybe some do, but the choice was clear for me)

This month has brought on new challenges and new things.  I took them on, and I am dealing with it as I always have.  Do I collapse in to bed at night?  YEP.  I get a lot done, and then I really do.  I sob on and off, at random times for random reasons.  These times are much less than they used to be.  This autism thing is an emotional roller coaster.  You have to have some thick skin for this...and I hope mine has grown to be that way.   Just when I think it's going good...autism SMACKS me in the face and brings on a whole new challenge.

When you ask how I do it...I don't really ever think of how I do it.  I just do, and so would most of you. And, no...I do not want to teach autistic kids.  No offense, but I get enough of that at home.    

Bring it on autism...I am about ready to buy a suit of armor.

(Now do you see a good reason for ART?)

Changes again

Once again, I am preparing myself, and Phoebe, for some big changes.  Phoebe has behaviors.  Really bad behaviors.  (and I mean REALLY bad) Can she help it? Does she like doing these things?  Who knows.  The bottom line is she can't do these things around school mates.  I understand that.  Do I like it?  Not at all. Have I learned in the last 13 years of her life that the things I hate the most, are usually the things I can change the least?  Yep.  This is the story of my life.  I so wish Phoebe could sit in a class and do reading, writing, math and science.  I do.  It's my least favorite feeling in the world.  I have a child with behavioral problems.  You hope to raise polite, polished, somewhat smart, happy person.  I am doing some of that, but she is anything but polite and polished.  I have accepted autism, and PDD-NOS, and behaviors, but I fricking hate them.  I REALLY do.

A long time ago, I gave up on the idea of graduation, graduation parties, and that big old DIPLOMA.  At this point...WHO CARES.  I am just going to be happy if she can get through the day without saying, "you're a shit", or "I hate you" to any of her family, or her teachers.  (or throwing chairs, desks, pencils, etc.- you get it)  Yes, Phoebe is autistic, but that is just the beginning.  She doesn't understand consequences.  She doesn't get subtle hints.  She doesn't get that if you say something horrible...it hurts someones feelings.  I DO.  I understand that she is going to miss out on things, because of her disability.  (As much as I don't want to think about it)  The bottom line is...if she's happy, I'm happy.  If giving her less constraints means more happiness and better behaviors.  Let's go for it.

Because eventually, she'll change things up and we will be doing this again.  We will again make  changes and do what makes her happy (and less apt to make her have behaviors).  I'll keep doing it...until I collapse.

That is my job.

MOM.

More and more

I am taking on more and more.  Everyday, I add something on, and say to myself.."it's fine."  I have 16 credits this semester.  Way more than I ever would want, but feel as though I need to get done with my certification sooner than later.  I need to get a job doing what I love, and time is not on my side.  So, I'll take on more and more.  Oh wait...let's add in the parenting part.  Each day, there are things that I must do as a parent, and then I add on something new.  I add on soccer practice, and soccer games.  I add on homework for Brendan, and help with projects.  "It's fine."  (these are things I like) I add on daughter/son and mom time, homework for him, social skills help for her, bathing, brushing teeth, feeding, etc. .  Oh- and homework for me.  Now, let's add autism.  Each day brings something new, and something different. "IT'S FINE." I am not really sure what that will be, but I know it when it happens.   I can't anticipate these things.  It's like a puzzle (imagine that).  It could be screaming for no reason, picking, no socks, or more socks, and FOOD, FOOD, FOOD!!  The never ending battle with food.

There are days I just want to SCREAM at the newest autism-ness we have started.  I guess I am that eternal optimist hoping that one week she will just be "better" and I'll be able to say..."Wow, this week was easy!"   "I THINK I am fine." I hate to say it, but each week seems to be getting harder.  Is it puberty?  Or is it autism, or both?  (I hope its the first)  Or is it me? (Well- that can't be!)

Somedays, I teeter on the fact that I might go right over that edge if one more thing is added.  Just one.  But, then again...I'm pretty sure I'll be fine. :) (at least I hope)

Insurance

Today is a banner day.  I got a letter from Blue Cross Blue Shield that states that Autism treatments will now be covered.  Such as: Applied Behavioral Analysis, physical, speech and occupational therapy.  Nutritional counseling as part of ASD treatment, other mental health benefits or medical services to diagnose and treat autism spectrum disorders.  Applied behavioral analysis  helps with behaviors associated with ASD.  From 2008 until last year, I spent nearly $3000 on ABA therapy for Phoebe.  She went 2 time monthly at $50-55 per session.  Let's be honest, I borrowed the money to pay for it.  I don't have an extra $100 a month for anything, and I think many families have to borrow if they even have that option.  I borrow for almost all the extra things I do for Phoebe.  I am lucky...I have that option.  I only started ABA when Phoebe was in 5th grade.  Can you imagine the cost if I had started when she was 5?  And, not to mention the speech, and OT that I was taking her back and forth to.  It would be too much.

The parents of autistic children are stressed enough- and by that I mean me.  At least now, one thing is a little lighter on me.  ie: Bills:)

The other one.

Let's face it...the other child in an Autism house gets the shaft.  All around in life, my Brendan gets the bad side of autism.  If I have to face it - he has to face it.  If she has a meltdown and I have to deal with her, so does he.  He can't run away and hide.  He can't escape the meltdowns.  He listens and takes it on.  He has to explain her, and try to understand her.  This isn't easy for a 10-year-old.  He is only capable of understanding so much...and this is a lot.  We have been over this before, and I think everyone understands that despite being in a single-mom house, and having a sister with autism...he is a remarkable young boy.  (and that isn't just mom bias)

Recently, we were given the opportunity to go to Universal Studios with family for a birthday.  I went over this in my mind so many times.  Could I just take Brendan?  Would I break Phoebe's heart?  I planned the trip, and made arrangements for my mom, and her dad, to take her for the long weekend.  I told her about the trip.  Her response..."is there going to be fireworks there?" So, I replied "yes." And, she said, "have a good time, mom."  So, Brendan and I got to go, and be together for the first time ever.  (well longer than a day or two).

We flew down on a Thursday morning, and from the moment we left the house, he had a smile a mile long.  Did I have guilt?  I sure as heck did.  Is that normal?  God, I hope so.  I checked on Phoebe as best I could, and even got an email from her that said..."i am sad."  Which made me feel even worse.  However, my mom had it covered, and her dad made her weekend special.  I had nothing to worry about.  (Unlike last year when I laid on the floor and cried when my mom and I went to Vegas- more on that later)  We spent 4 days together enjoying the parks, and enjoying time together as mother and son.  We laughed...a lot.  We went to see Harry Potter at Universal.  We bought a ton of junk that we won't ever remember.  We drank butter beer.  We ate cotton candy (YUCK), and got candy at Honeydukes.  We did it all.  For the first time, I cherished EVERY moment of it, as hyper as he was.  I loved seeing him have no stress about his sister, or his life.

He got to be Brendan...10-year-old boy.  And, I got to be Beth...mom of Brendan, not mom of Phoebe, the autistic girl.  It was all about him.  As it should be sometimes.

IEP...IEP

Ok, so yes I am going to be a teacher, and yes I do know a lot about IEP's.  The thing is, I know a lot about IEP's because I have been sitting in these meetings since my daughter was 5 years old.  Sometimes they are fast, and and sometimes they are unending.  The longest one went over 3 hours.  When these kids reach puberty- LOOK out.  Everything is intensified, even the IEP's.  I've cried...I've laughed...I've even felt like throwing up.  It doesn't matter if the schools are doing everything they can for my child.. I still feel horrible when my kid is THAT kid.  My kid is THAT kid who pulls down her pants.  My kid is THAT kid who yells obscenities, and screams for attention.  Yes, she does these things.  YES, it's a horrible feeling to think she does that.  I want to run right over to school and walk her through her day, so that I can SCREAM at her when she does these things at school.  (Will that help?  NOPE- just make it worse)  I just can't help it.  As a mother, and a concerned one...it takes it's toll.  It's my kid that the other kids look at.  It's MY kid that adults look at.

I have no idea why she does these behavioral things.  Well...that's not entirely true.  I have lived with her long enough to have a good idea why...but essentially don't know exactly the reason behind it.  It is it purposeful??  That is the question of the day.  Sometimes it seems completely purposeful to call me an idiot, or tell someone that I smack her.  And, then there are times when I can see in to those beautiful green eyes and know that she is seeking an answer to something.   That is the bulk of it.  She can't express certain feelings, thoughts, and ideas.  (Others she can OVER express - like bowel movements - lucky me) She can talk, but can not express.  I even forget this.  She seeks the attention of me, and anyone who will listen...good or bad.  Do I have moments that I wish she was just "normal"?  Yes, of course.  Is that normal?  I sure hope so.  Do I want her to be on the cheerleading team?  The soccer team?  Yes.  I really do.  But, for now I have to be happy with a day that is all GREEN on her behavior sheet.  Today was one of those days! All Green is a HUGE improvement over a week ago.  I'll take what I can get.

Teaching these kids is challenging enough...but parenting them is nearly impossible. Maybe an increase in prozac is in order for me.

After all - she is still my baby girl...and this road is a long one...with an end not nearly in sight.

Maturing, and future. WELCOME BACK SEPTEMBER!

Well, here it is.  It's the end of summer.  We have officially made it through another summer filled with flooding, moving in- moving out, tantrums, med changes, breakthroughs, tears (and more tears), and laughter.  Our last weekend of the summer is always at the Lake with family and friends.  It's a crazy, fun filled time that has become somewhat of a tradition.  It's so much fun, and the kids literally run all day long until they can't run anymore.  Each year, it becomes more apparent that while the other kids grow up, and become more independent....my one child remains very much the same.  Does she progress?  I became very aware that there has been very little maturing over the last year or two.  I hope that she will mature more, but not sure it will ever happen - there is no guarantee.  I can't leave her for more than a few minutes...without having to check on her.  There have been moments of nakedness in main rooms, bathroom accidents, the sneaking of cake, and cheese, screaming inappropriate things, and saying things that make no sense (to us anyway).  The only saving grace is that tomorrow begins her happy place.  She starts her schedule that she loves.  Tonight...she has a HUGE smile on her face.  I am thankful for that.

My family is very tolerant (most of the time- and who can blame them for not being tolerant?).  They are accepting, and loving, and laugh with me in times of the most stress, but, they don't live this life.  They don't see the day-to-day with autism.  Only the families in the trenches of autism see this.  This is not fun.  I won't sugar coat it.   Do I love her?  OF COURSE.  I have all the same dreams and hopes for her.  But, this has been non-stop for the last 13 years.  I don't get to walk away and leave her to be alone for more than a few minutes.  Someone has to watch her.  That someone is me, and she needs me.  I am not sure that any woman (or man) is cut out to be intensely parenting like this.  I have been researching, and looking in to the future for this child, and right now her future is dim.  She will have services until the age of 26.  Don't get me wrong...I am thankful for that.  Most kids are done at 18.  I have those extra years.  Am I planning a future for her?  Yes.   Am I doing this alone?  Pretty much.  Do I need a home for her other than my own?  (Wouldn't that be nice?)   The Hope for Autism Foundation is also helping me plan for her...because I am not the only one with a child having a very UNCERTAIN future.  While most families think their children will be ok, and that they will head to college, get a job, and find a nice place to live....families living with autism can't do that.  At least not here in Michigan right now.  That has to change.  1 in 88 children has autism?  Think about that.  ONE in EIGHTY-EIGHT.  Oh my god.  Where will all these kids go, or who will help them?  We need to help them, and get things in place...NOW.  Today starts that journey.

As for tonight...I plug along, packing backpacks, and getting snacks ready to send my first born to 8th grade (technically), and my BABY to 4th grade.  I am proud of who they are...for sure.

And today, I am thankful for that beautiful smile on her face.  (and on mine too:)

The end of summer.

I'm tired of summer.   Living summer through my son is what it should be...pools, sports, hikes, swimming, beaches, boats and fires with s'mores.  Living summer with Phoebe is exactly why I am so tired of summer.  Tired in general.  Summer is uncertainty, anxiety, and boredom for her.  She doesn't have friends calling for sleep-overs and asking to come shopping at the mall.  It just doesn't happen.  So, she turns to me... as always.  I am her friend, her mother, her caregiver, her bather, her guidance counselor, her punisher, and her least and most favorite person in the world.  I get the tantrums, the fighting, the need for food constantly, the defiance, the badgering of her brother, the "I'm going to ask you this question, but do what I want anyway" moments.  I get it.  I get the ATTENTION seeking behavior.  CONSTANTLY.  Did I say constantly yet?  Because it feels like it has been going on constantly for weeks.

I'd like to sit with a group of people, and/or family and not have her tell someone..."my mom smacks me", or "I just farted", and the always popular "I have to go POOP!" or my favorite this summer, "I have a fist and I know how to use it."  (where the HELL did that come from??)  I'd also like to be able to be in Meijers and grocery shop for more than 10 minutes...to actually buy things we need.  And, when I take a turn to find something I hadn't anticipated, to not hear...."MOM...NO!!!"  (and this voice of hers is LOUD!)  I'd like to not buy a pack of markers every time I hit a store- because it keeps her happy long enough for me to get what I need.  Knowing full well  that the other 5000 markers I have at my house are good enough.  I'd like to have an adult conversation with a friend that I run in to...and not have her say something to get my attention, and make me want to run away screaming.  I realize that these are all social norms and prejudices that have been placed upon me in life.   That even though most of us know we shouldn't say these things, or do these things...most autistic children (and Phoebe especially) do not.   And, to be honest...THEY DON'T CARE!  It's the parents and the caregivers that do care.  Do we as parents become numb to this?  I guess some of us do at times, but occasionally I fall back on what I learned growing up...those "social graces", and I want to fall in to a heap on the floor and sob.  (which does sometimes happen - more than most of you would like to know)

So, as for this summer I'd like to say..."SEE YA!  Don't let the door hit you in the ass on the way out."  (Sorry- but it's true)

My patience is worn thin after the summer months...and I can't wait for the routine to be back to "normal."  Whatever that is.

The art of being a sibling.

I may have talked about Phoebe's brother before, but not like this.  Her brother was always "the baby".  He was normal in his development, speech, milestones, etc.  He really was.  I was fortunate not to have another ASD child, as so many families do.  Brendan has always been toted around to school, therapies, doctors appointments, and various other non-pleasant activities that involved his ASD sister.    Did he enjoy it?  I doubt that.  Did he know any differently?  Nope.  He was an infant when all these "developmental delays", "ADHD", "speech and language disorder" appointments began. Did he realize that she wanted to touch his hair constantly, because she has sensory processing issues?  Nope...he didn't mind.  That was just Phoebe.

Brendan is heading in to his 10th year of life.  He has seen it all, and been there for (almost) all of the ups and downs with his autistic sister.  When he was a little younger, he would cry if Phoebe had a big meltdown, and sit quietly until it was over.  He now will take over and sometimes go in to calm her down (before I can even get there).  He even will tell me to calm down, and let him handle it.  He is surprisingly good with her, and caring.  Does he want to punch her?  Yep.  Does he sometimes?  Yep.  Is that normal brother behavior?  For sure.  I even smile at the (somewhat) normal "banter" between he and she.  It's not usually a long winded conversation, but it is comical.  We often laugh lightheartedly with her, and at her.  Autism can be really funny!

This life however,  is not easy for these siblings.  It's not fun, and not "normal".  (Well- it is normal for us)  Have I watched my 9-year-old bend down on the soccer field, basketball court, and playground to sit with a hurt friend or opposing teammate?  Yes.  Has he cried when he sees Phoebe struggle with normal behaviors?  Yes...and then I cry, and the rest of my family cries.  (we are like that)  This boy has a huge heart.   I hate to tell you, but siblings of special needs children are born to be compassionate, caring individuals. Brendan is a great buddy to her, and a great teacher.  Now, he has even taken on the roll of personal trainer- getting her outside at least once a day to do some activities.

Once, he said to me..."So, Mom...you had Phoebe right? And, in our family we have all the cousins right? (I'm nodding through all this).  So, autism is pretty random then? So, how come Phoebe got it?" What is the answer for this?  I just gave him the textbook answer by telling him it was like every other disease, or disorder that was a random thing - 1 in 88 to be exact.  (What I really wanted to do was give him the Calvin and Hobbes version, but I didn't) His response was..."Well, I guess someone wanted us to have her."  WOW.  That was profound..and I am not a religious person.


And yes Brendan...Autism is random...and thank god you are who you are.  

To my insightful, loving, kind, and caring little man...thank you for putting up with Autism just like all the rest of us do. (you do it well)

Impulses

Think of every time you wanted to say something to someone, but didn't.  Think of every time you wanted to hit someone, but didn't.  Socially, these things are looked upon poorly.  We have learned over the course of our lives to NOT do these things.  We understand and are embarrassed (some of us), by the thought of being looked at strangely, or being criticized for being obnoxious and rude.  Now...think of what it would be like to not have that capability.  Phoebe can't control her urges, her impulses, or her rudeness to be exact.  When she wants to hit someone, say something, do something...she just DOES it.  There isn't that ability to look around and wonder..."who is watching me?"  And, really...she doesn't care.  She doesn't realize social graces.  She doesn't care if someone stares, or someone says she's obnoxious, or that she has no manners.  SHE DOESN'T CARE.  She tries to care...and has learned that she should care- but it's not really there.  Is there that ability to learn these things?  I hope so.

Is some of it learned behavior? Yes.  Is some of it obnoxious and teenager like? Yes.  But, for the most part--she can't control that part of her brain.  We are continuing to get behavior therapy to help her learn that these things are not socially acceptable.  I really want her to be able to live, and work someday without saying things like..."you're ugly, and your dress is short", or "you're a horrible driver," or my favorite, "You look fat."  When someone is 13, but has the mental capacity of a 6-7 year old (maybe), they surely look like they should know what is right, and what is wrong.  This is not true.  Looks are deceiving, and with statistics like 1 in 88 for autism...odds are you are going to run in to one of these kids someday.  Please try and be patient when you are out and about and hear or see someone doing something odd.  They could be autistic - and they can't help it.  THEY didn't ask to be this way.  I can guarantee, if you stare at Phoebe...she will say, "STOP STARING AT ME YOU FREAK!"  (and those of you who know her- know I am right)

One of my favorite stories about Phoebe was when she was about 2 years old.  We were out shopping, and she was doing her normal shrieking every 2-3 minutes.  This was not a cry, or an attempt at attention- just something she had to do.  It was literally a shriek...and then she'd stop.  An older lady stopped me and said..."CAN YOU PLEASE GET HER TO STOP DOING THAT!? My hearing aid is buzzing, because of her!"  So, I kindly replied..."Lady, if I could do that...I would be a millionaire." To which she stomped off.  :)  (It started early with Phoebe)

I hope that Phoebe can learn and evolve to a young lady that can control these urges and impulses.  The brain is an interesting thing...and I plan to work on changing hers as much as I can.  

For now...be patient with her.  She can't help it.

Recharged and acceptance

This is the one week of the year that I get to myself.  I have 6 days to recharge, go on vacation, clean-up, or do what I want to relax.  Due to a burst pipe at my house, the clean-up and organize mission was put on hold, so I came to the beach.  I don't have to worry about locking the fridge and the pantry, or making sure my phone isn't in the hands of the iPhone wizard (who changes my settings, texts multiple friends, and changes my passwords:) But this, of course, is only temporary...until she comes home.

After many long years of tears, questions, appointments, outbursts, meltdowns, and general anxiety (by both of us)...I have accepted Autism.  I can sometimes even laugh at it. Recently, while engaging Phoebe in a "normal" conversation...I asked her what she thought her dad and step-mom would name their new baby.  She replied..."pain in the ass?"  I laughed for 10 minutes.  I corrected her, of course, and told her no...that the baby was not going to be a pain in the ass. These are the conversations I have with my Phoebe.  (and probably always will) I have accepted that I will be that parent with an older child, who is following me around at the store.  I will probably be the parent of a child, who never drives herself around, who never dates (I hope:), and who will probably need some sort of care for the rest of her life.  I accept that.  A year or so ago, while working, I met an older lady in her 90's at a nursing home. She lived there with her daughter.  The daughter had Down's Syndrome, and the mother had been caring for her for more than 60 years.  I shared with her about my own daughter and she looked right at me and said..."but who better to take care of her than you?"  She also said that from the time her daughter was born...she knew she would take care of her.  This lady was truly inspiring as I watched her help her daughter eat, as they laughed about silly things. 

I accept that I won't see Phoebe dance at a recital, or play soccer like I did.  I will however, enjoy seeing her laugh at her brother and swim with her cousins, say inappropriate things at inappropriate times, and doing the things she loves.  (like changing the settings on my iPhone, and watching MSU vs. Minnesota in basketball 10 times a day)

It's autism.  I guess I have to accept that.  

Sameness

I have said it before...but I'll reiterate that my life is a script.  My life as mom, is scripted when it comes to Phoebe.  She asks something...I always answer with the same thing.  In the summer, this isn't any different.  In fact, it's multiplied by 100. (or a million - the number is random)  Phoebe's scripted life still gets her up at 6, and ready for bed at 7 pm . The hours in between are filled with those very questions and answers that give her ASD, OCD, and anxiety, what she needs to be ok.  As I age, I sometimes think I am going crazy.  "Did she just ask me the same question 30 times until I answered the way she expected me to?"  In fact, she did.  The mere idea of changing the answer can sometimes send her in to a full on tantrum.  This I avoid at all costs, but should I?  (I don't know...but I do)

Case in point...recently Phoebe asked when she got off the bus..."Mom, what are we having for dinner, and what are we doing tonight.?"  So, I replied in my funny- ha, ha, way..."we are eating dirt, and going on a boat ride to Florida."  She stared...I stared.  What came next was 2 hours of..."Are we really eating dirt?  Are we really going on a boat?  I don't like boats.  Are we really eating dirt?"  After that...I yelled..."OH MY GOD...I WAS KIDDING!!"  And, it hit me...just like it always does.  Everything is reality to her.  EVERYTHING.  You say it, you mean it.  Just like the ride at Disney's Epcot that has Lightening in the beginning. To her, that is REAL lightening...and that means a storm.  (which means royal meltdown including calling me every mother f*ing word imaginable)  

So, I'll continue to make her life easier (and let's be honest...mine too).  I'll answer the questions the way she wants me to, and then I'll slowly make her expand her life.  Little by little I will interject new scenarios, and new ways to deal with things. I'll keep parenting the ASD as best I can.  As best I can- whatever that means.  I'll sit here every evening printing out her schedule for the next day, so that she knows what to expect.  (And me too)  

So for now..."We are having Chicken for dinner, and we aren't going anywhere tonight." And, tomorrow morning..."Yes, you can have a piece of bread and an apple, and take a bath." 

and so it begins...

And so the summer begins this week...with one anxious, stressed autistic girl.  The things that have been routine for the whole year will come to an abrupt halt.  The bus will not arrive at 7:50 am every morning to pick her up, and drop her off at 3:50 every afternoon.  She will not be on a tight schedule from 8:30 am until 3:30 pm- down to the 1/2 hour or more.  She will not know her expectations at home on a daily basis, until I set them.  The constant asking, wanting and needing food will begin to stress me out beyond belief.

Last night was the first of many nights that she was awake, on and off, all night.  She even managed to ask what day was her last day of school at 3:00 am, which led me to realize that was what this whole thing was about.  As I write this, I am getting her eating schedule ready, and her daily list together.  Each morning, every summer since she was 5 years old, we have made a daily schedule together.  It helps her know what to expect for that day.  Even though it's not the same as school--it's a close second.  Not only does it help her, but it helps me in more ways that you can ever know.  If we don't have it...she is right next to my side  every waking moment of the day asking... "what are we doing now mom?", "when is dinner mom?", "what can we do now mom?".   A schedule at least gives me a few moments in the day- where she knows what she should be doing.  Does she always do it?  No.  (At least she has something to look at and know there isn't anything huge planned for that day)  Does she have more meltdowns in the summer?  YOU BET.  Do I have more meltdowns in the summer?  Yep. :)  However, my meltdowns are more based on the fact that I might need to take out a small loan to pay for a babysitter, and to buy the amount of groceries I will need to feed these 2 children for the summer.

So, today will be my last day of full freedom, as I get her schedule together, and her life (and mine) organized for the next 3 months.  

I think I better call my doctor, so I can double up on MY prozac...and my prilosec.

Look out summer...here we come!

What is normal?

What is normal?  My normal is Phoebe.  She was a happy baby.  She was a sick baby.  She was a delayed baby, but she was normal to me.  She smiled at me when she was supposed to.  She cried when she was hungry. (she still does) She laughed and giggled, and said "dada" and "turf" (dog) when she was supposed to.  What she didn't do was sit up on time, or crawl, or walk on time.  Eventually, most of these things came...and that was normal.  "She's big for her age. She'll do things later than most babies."  Ok, I took that to be normal, and I went with it.  She had terrible asthma, and breathing treatments, and 1000 ear infections, and tubes, and all that stuff.  Normal stuff.  Nothing out of the ordinary.  At least to me...it didn't seem that way.

Was it stressful?  Yep.  Was it rewarding?  Yes.  She would shop with me (and nana), and meet friends, and laugh and play with others.  She was not that different.  She was chubby, happy, smiley and funny!  The first noticeable difference was in pre-school.  She wasn't where she should be.  Ok, sometimes that is normal.  I immediately started getting her the help she needed.  I got her extensive speech therapy, and occupational therapy, and physical therapy.  I did it all.  It was normal.   I did not think that "developmentally delayed" was a label.   It was who, and what she was.  Since then, I have done everything I can to help her.  This is my normal.

Recently, she was in her bed crying.  I went in and asked her what was the matter.  This is not an easy question for her...she can't really answer, or know most of the time.  She replied..."I have no idea, but I can't stop!"  I laughed.  I actually laughed.  I sat and looked at my autistic, delayed, PDD-NOS, whatever-you-want-to-call-it daughter and said to her..."yep, you're a teenager, and that's normal."  I walked out of her room knowing that some of this is just normal teenager stuff.

Then I thought... "OH MY GOD! I HAVE A TEENAGER!"  (Is that normal?)



**A few more funny things Phoebe has said lately. (to lighten the mood)

• "mom, I need another American GOO-GOO doll." (not even sure how she came up with that)
• "I'm just chillaxing"
• I said to her in the car..."you need to calm down."  She replied..."I AM CALM!!!" (I laughed)
• "Mom, you should really brush your hair before you take him to school." :) (OMG- am I embarrassing her?)

Mothering plans

Mothers Day has brought up many thoughts this week.  My mother is the funniest, and the best mom in the world.  I realize many people say that, but those of you who know my mom know she is THE BEST. We do everything together, talk many times per day, and enjoy each others company.  It really is the greatest.  I can't imagine how my mother got through life, when her mother died when she was in her early 40's.  When I was little- that seemed sooooo old.  Now, as I look to 42...it seems really young.  Not sure how she dealt with that, and raised my brother and I with my dad.

All I ever wanted was to be just like my mom.  I wanted to go and graduate from Michigan State, and I did.  I wanted to date my high school sweetheart, get married and have children, and I did.  I wanted to be a stay-at-home mom, and I was.  However, that's as far as I got.  I never looked past raising children.  I wanted to be a mom, and I really never looked forward.  During my early 20's, I worked knowing there would be an end in sight, and that kids would be my focus.  That went as planned.  The wrench came in when the kids were little, and my husband left and we subsequently divorced.  That was the first thing that was not in the plan.  My thinking changed.  My life changed.  Then came the autism diagnosis. (PDD-NOS)

Autism was also not in the plan. (And, who in their right mind would plan for that??)  When you hear about kids with disabilities, before you actually have children, you think that it's not something you'll ever have to worry about.  Statistics are on your side.  (so you think)  I had the same ideas for my babies when they were born -  that my parents had for me.  They will grow up, and go to college and move out.  My husband and I will travel, and do all those things that parents do when their kids leave.  Right?  However, autism was not in that plan.  As Phoebe gets older, I realize that this "hands-on" parenting thing may go on for me -  for a lot longer than most average children.  I didn't plan for this.  Will it fit in to the plan?  Of course it will.  But, again...this is not where I thought I would be when I was 42.  When Phoebe was 12 months, she began to scoot on her butt to get around.  We called her the butt scooter.  She never crawled, and walked late.  That seemed so cute then.  I knew she would walk eventually, and that she wouldn't "scoot" down the aisle at her wedding.   Now I look at her and think...wedding?  Not sure that's even possible.

Phoebe has made huge strides in her life.  She has overcome a lot of obstacles, and I enjoy seeing her mature as little as it may be.  She makes me laugh.  She makes me cry.  She makes me scream.  I guess that makes me her mother.  Forever.  No matter how long that means.  Parenting her for the rest of my life has situated itself in to my plan.

Autism was not in the plan- but it's in our lives.  Forever.

Happy Mothers Day:)

is EVERYTHING Autism?

Autism is non-stop.  During the weekends, I feel like I can't stop thinking about what I could be doing for myself, what I should be doing better for my kids, what I could be doing for my health, what I want to be doing with my friends, and those "trendy" fun things I want to do with my kids.  It's the idea of what life should be.  The idea.  Not the reality.  My personality could not be farther from what my daughters is.  (for the most part)  She has high anxiety about the unknown, and I really don't.  She likes schedule rigidity, and sameness in foods, and routine routine routine.  I really...um, don't.  (Can I say that?)  Life isn't that simple.  I can't make things the same every day.  I can't control everything...I just can't.  I try really hard to, but in the end it's not really possible.  Autism is non-stop, and so is life.  I hate to say it, but the autism is going to have to adapt.  (sorry- but it's true)

This past weekend we had a garage sale.  Yes, my son helped me tremendously, and Phoebe helped here and there too.  But, tonight I am one tired momma.  My son got asked to go to a movie, and so I let him.  Phoebe wanted to go, and I hesitated on whether to take her.  Movies are not her thing, but the other kids were going, and she wanted to go with them.  Finally, I just said no.  Right or wrong...I just didn't have it in me.  I didn't want to go out for pop, and the bathroom 16 times--just so she could get up.  I just wanted to go home and relax.  As selfish as that is...I just said no.  She was not happy, but finally settled down. There are just days I don't want to deal with the autism.  (more days than I care to think about) Tonight, the autism had to adapt.

When people or Facebook asks what super hero you would be, or what super power you would have....my answer would be the ability to have a force field like shield around me and Phoebe.  Then when something came up that she didn't like...I could just yell..."SHIELD!" and she and I would be ok.  Right? Or maybe I'd choose to be invisible.  That would put a serious wrench in the non-stop autism world Phoebe lives in.  Mom?  Mom?  Mom? (that could get annoying)

Needless to say, I had to be selfish and do something for me.  I felt bad, but in the end it was all ok.  Everyone is now sound asleep and ready for a new week.

Ok Autism- I'm ready for this week.  SHIELD! (darn, it didn't work)

which way is up?

Phoebe is getting ready for the 8th grade.  Mentally, not really, but physically she is.  Each year the same issues arise around this time with behavior, and moods.  For the last 7 years, I have tried to figure out what causes these upsets.  She'll have a few good days, and then a terrible day.  A few good, a few bad.  It's so frustrating.  It's frustrating for her, her teachers, and her mom.  But, what is it really?  As I have said, Phoebe is a socially motivated girl.  She wants nothing more than to be with her friends, or even just watch other kids.  She watches, listens and learns.  All the normal things are, and have been done during school.  She has a behavior plan, and the ABC chart, etc. I applaud those who try their best to help her.  

But, what is it really?  (I say that again.)  Is she behaving the way she is, because she wants more interaction with her peers?  Or does she NOT want any interaction with peers, or other CI, or EI classmates?  Is she only really wanting attention from anyone who will give it to her?  Yes, yes and yes.  This is my conclusion.  (and not a very educated one) We build on to her schedule time for peers, and then take them away when her behaviors don't improve.  I have picked her up 3-4 times in the last few weeks due to behavior.  I'm not talking a little behavior.  I'm talking all out meltdown, throw desks over, rip paper, wreck markers, swear and call people fuckers (sorry), and so on. I can't even explain the amount of guilt that I feel when they call me.  Is it my fault?  No.  Do I blame them for calling?  No.  But still there is guilt.  Every mother has it.  

They cleared the room one day.  Does this help, or make it worse?  WHO knows!?  And, I think it depends.  So, what do you do?  What does the mom do?  What does the teacher do?  What does her team do?  I'm putting this one in their hands, and hoping we can come up with something for the end of the school year.  (again)  I'm taking my prilosec (doubled up), and my prozac, and gearing up for this yearly roller coaster ride.  Let's do it.

gulp.

Pain and medication

This week was an interesting one.  Phoebe slightly complained on Easter that her tooth/mouth hurt.  While I believed her- I also thought it was probably a cavity, and some sensitivity to all the sugar she took in.  She didn't sleep that night, and woke up for the day at 4 am.  I was slightly annoyed, to say the least.  It was not one of my better mommy moments.  Finally, on Tuesday I took her to our favorite dentist, and low and behold...she had a raging abscessed tooth.  OH MY GOD.  I felt awful.  The few times I have known people with abscessed teeth - they have been laid out.  Literally, could hardly get up from where they laid.  Although she is 13, and slightly dramatic (I say that with sarcasm), she is still autistic.   Her pain tolerance is out of this world.  She has had fillings, tooth repairs (a broken front tooth), etc. and never complained.  When she had her tonsils out 7 years ago, immediately after she said, "can I have my bologna sandwich now?"  She never once said she didn't want to eat. (big shocker)  It was only a few years later when her brother had his tonsils out, that I realized she was amazing when it came to pain, and he was like a typical child...in tons of pain, and hard to console.  This autistic child is amazing.  (not that her brother isn't...he's amazing in his way too)

I had to give Phoebe Tylenol to help her sleep during the tooth pain.  While it helped, it started me on a journey to remember all the meds this child has taken.  For my Psychology class, I had to watch a documentary on childhood bi-polar disorder, and the medications for it.  It was eye-opening and scary.  The things we will do to make our kids more "normal".  God forbid they don't fit in that box of "normal" I don't deal with bi-polar, and I don't know what those families dealing with it have to do for their children.  I only deal with PDD-NOS.  Only.  (Ha!)  I do, however, wonder what I am doing to this child of mine.  She has taken medications to make her less hyper, less moody, less impulsive,  more able to focus, less anxious, less sleepy, more sleepy...etc.  At one point a few years ago, I weaned her off many of them to get back to the basics.  I needed to see who she was again.  Throw puberty in there, and growing...who knows what you're really getting?  While I want Phoebe to like herself, and be able to fit in with peers...I also want her to know that she is unique, and special.  She doesn't have to be like everyone else.

So Phoebe...
Not everyone can name every child in the 1st grade on the first day of school.  Not every child can list all the kids in the 4th grade, and then go back and make sure to cross off those that have moved.  Not every child can name the quarterbacks in the NFL, remember addresses, where mom left her keys, give the numbers and names of every basketball player on MSU's team, text my friends and finish my Words with Friends games, finish my sentences when I didn't really even know what I was going to say, and change all the settings on my iMac, and iPhone so that I can't figure out how to change it back.

Embrace your uniqueness in this Autism Awareness month.  I sure do.

Autism Awareness

Yes, it's Autism Awareness month.  You should "Light It Up Blue", for Autism Speaks, and do what you can to help out those who don't know anything about Autism.  I hate to sound cynical, but who doesn't know about autism?  I mean...we've all heard about it, and yes...some of us don't know the details...but we've heard.  I'VE HEARD IT...believe me.  I am so sick of hearing about it...I am blue in the face (no pun intended).  I'm tired of talking about it.  I'm sick of dealing with it.  I'm tired of listening to it.  I'm sick of parenting it.  I think you get my drift.

For those of you thinking about teaching autistic children, or working with autistic children, there is no one perfect definition of what autism is.  Yes, we know the dictionary terminology, but I'm talking about what it means to be autistic.  EVERY child is different.  I can't stress that enough.  Phoebe is proof that "typical" autism theories, and strategies don't always work for her.  I've always said she has Phoebetism.  She is super social, and sometimes inappropriate.  (ok- lots of the time...inappropriate)  She can talk you under the table, and work a computer, and an iPhone like no-one can.  She has co-existing conditions, as some autistic children do.  She has high anxiety, and serious impulsivity issues. Also, she wants constant attention, whether it be negative or positive.  (And, not to mention the OCD, eating voraciously, and temper, temper, temper:)  She can swear at the most inopportune moments and make you feel like the worst parent in the world.  However, she doesn't necessarily understand the meaning of what she's saying, or doing, and sometimes she does.  You assume she does and there lies the problem.  I even assume she can do, say, or act a certain way...and then I am forced to realize this isn't true.  (sometimes the hard way)

As a mother of a child with autism, I have to be on my toes at all times.  There isn't down time when I'm with her.  There are times I prepare for the worst, and she is the best...and then there are times I think she'll be great, and the 2 hour meltdown takes place.

Don't get me wrong, I can handle this autism/PDD-NOS/high functioning thing.  I tell myself I can.

But, you should know when you talk to me...I am always aware of autism.  ALWAYS.

It's April, and I am AWARE of Autism....Now you should be. Go educate yourself, and make a difference.

http://lightitupblue.org/Markslist/home.do

Spring Break...

Spring break.  Who doesn't love spring break?  Well, I think I can answer that for you...but you probably have already figured that out.  This won't be a blog about how awful breaks are for autistic kids, because we all know that.  I would like nothing more than to jet off to my favorite Sanibel Island with both kids in tow.  However, I have class, and the traveling part is the challenge.

Phoebe used to love to go out.  She loved to ride in a stroller and shop, and go to eat, and go to the mall, etc.  She loved it.  She would sit happily, and smile, and laugh.  Rarely did she have a meltdown, or want to come racing home.  That came with puberty and getting older.  That came with the reality that the world isn't so great...and things that scare me happen.  There are some irrational fears that also came along with adolescence, puberty, and autism.  Phoebe is deathly afraid of lightening, fireworks, rain (due to the lightening factor), and cannons.  (Yes, cannons...like the ones in Mackinaw Island, or parades)  She also fears the hole that is left between the opening of an elevator, and the floor.  She takes one GIANT step to get over that, just in case.  It has taken me years to figure out why these things are so hard for her.  Take away the noise factor, and what you have is general fear.  It's the not being able to control it, and not knowing what might happen.  We all have those fears.  We all have those thoughts...but our mind tells us that things will be ok, and we can rationalize with ourselves.  She doesn't have that.  She really tries, but in the end her fear gets the best of her, and she retreats to the basement, or under the covers of her bed.  She tries to mimic what we do, but it never really works.  No medicine has been able to help her with that, nor will any medicine every be able to.   I have finally just given in to the fact that rainy days are days spent inside making sure she feels comfortable.  The sheer panic that ensues when it storms, or when fireworks go off, is not something any mother should see in her child's eyes.  Ever.

Traveling causes a challenge for Phoebe too, as she can't control what a plane might do.  Her ears hurt, and she can't figure out how to clear them.  The turbulence makes her scream out loud, and the fact that she can't get up and get away makes her crazy.  And, don't get me started on the bathroom issue.  When she has to go- there is no waiting for the seatbelt sign.  I know...Benadryl might work, but then who's going to carry this 5-foot 4-inch WOMAN out of the plane??

Really it all boils down to the fact that I can't take the stress of trying to get her through that whole process without freaking out.  It's just too much (on me).  This mother has figured out when to pick her stressful times...and that is just not one of them.

Maybe the Xanax is for me?  .

On a lighter note...

The top 10 funny, or silly things Phoebe has said in her 13 years:

10.  "The snow" (said like...the sssssnooow) - Age 3

9.  "A momma go?  A momma go?  A momma go?"  (oh the irony) - Age 3...to 13.

8. "The garbage man took my ninny"....:(  (insert sobbing here) - Age 3 1/2

7. "My cotch"  (her word for crotch- thanks to her auntie) - age 5

6. "You wrecked my life" (said consistently to my brother- which makes us laugh)- age 7 - current

5. On a plane to the Yale Autism clinic- I let the flight attendants know that I had my autistic daughter on-board.  They made an announcement once we were in the air.  They said..."we would just like everyone to know that we have a special needs child on-board, so please be kind and polite."  Phoebe looked at me and said..."WHERE?" (love that)

4. On her 10th birthday, Phoebe's cousin called her and said..."Phoebe, happy birthday!  Are you doing anything tonight?"  Phoebe replied, "I have to go poop.  Bye."

3. At Epcot Center in Disney World, Phoebe was having a major meltdown.  She knew there would be fireworks, and she was doing anything to get me to take her home.  She screamed..."My dad is made of pizza sauce, now take me home WOMAN!"

2. At a friends house, Phoebe was trying to describe the pimple on her neck.  She kept calling it a "nipple".  I was correcting her, and as she had been ready to go for the last 10 minutes, she yelled at me..."WHATEVER, LET'S GO NIPPLES!"

1. My favorite... After leaving Epcot Center in Disney world, the bus driver said he would be nice, and drop us off-right at our condo.  Phoebe let him know.."You are a good driver."  Except that he missed it the first time, and had to go around.  On the go around, he put the bus in to a ditch, and got stuck.  We weren't far from the condo, so we decided to walk. On our way out the door she looked at him and said..."You're not really a good driver."  Good lord.

As hard as you are Ms. Phoebe, there are times you make me smile and laugh.  Oh the things we wish we could say...and you just do.  This is Phoebe's world...and you have to laugh.

Loneliness and autism

I'm lonely.  Phoebe is lonely.  I guess that makes autism a lonely disorder.  Autism makes it hard to make friends, and have friends.  It takes a special child to want to hang out with a child with autism.  Phoebe wants nothing more in life than to have friends.  Nothing.  She wants to know what her friends are doing at all times, and is constantly wondering when we will see her friends.  I have attempted to make contact, and kept lines of communication open with her friends, but in 7th grade...this is not easy.  Middle school is a difficult time as it is, and then to make time for a friend with autism may even make it more difficult.  Most kids are self conscious, growing in strange ways, and have hormonal issues.  This is the same for Phoebe...hormonal, self-conscious, and strangely aware of her differences.  However, her autism makes it hard to make friends.  She doesn't have the set of social skills to help her in making new friends, or many opportunities to do so.

Do you know what this means?  The same goes for me.  I have a lot of friends, but rarely see them.  I am limited to activities, because of autism.  Some might say this is my fault, and to a degree...that is true.  It's just easier.  Easier to not deal with a house that is destroyed, because I am out.  Easier to not see her face waiting up for me, when I go out in the evening.  Easier than closing every drawer she has opened in her room, and every drawer in the bathroom.  Easier than hiding anything of value that I don't want played with, or eaten (for that matter). Easier to not have to explain where I am going, who I am going with, when I will be home, and what things she can or can't do.  I have tried...believe me, and it is just easier to stay home.  I pay dearly when I say I'll be home at 8, and get home at 10.  A meltdown usually happens...either that night, or the next day.  

Don't get me wrong, I love my house, and I love my kids, but everyone needs some breaks.  (and I take them as they come)  I get breaks when the kids go with their dad, and that is usually every other weekend.  I take that opportunity to SLEEP, grocery shop, enjoy the silence, and try and see friends.  Many people have family time on weekends, and when I have the kids...I have family time.  (Constant interaction, following around, want to eat every 5 minutes, autism interaction)  I make the best of it, and enjoy it. (well, most of it)

Autism is intense.  (and lonely)

Happy Birthday to Phoebe!

As I write this, it will turn midnight, and be March 4, 2012.  This will be the day my daughter turns 13 years old.  It was thirteen years ago today that I was a scared, new mom in labor.  I won't bore you with my "birth story", as that is only a good story to me.  (Although I did get my fingers slammed in the car door) Thirteen years ago I had a lot of dreams for this baby girl.  This baby girl came with all the same hopes and dreams that most every mother has for their babies.  She had a load of black hair, a cherub round face, and bright red cheeks.  She cried like someone was seriously hurting her - which put a smile on my face.  When they showed me her face for the first time, I couldn't believe that she was mine.  Phoebe Louise Trier came via c-section at 6:00 pm on March 4, 1999.

This baby girl also came in to this world with issues from the beginning.  They were monumental at the time.  MONUMENTAL to a new mother, who had no idea what to expect.    She tried to breath before she was out, and took in fluid.  She spent five days in the NICU.  I was devastated, and scared to death.  She didn't like to eat, as she was being given IV fluids (or liquid jelly beans as my mom and I called it).  Once she was given the ok...we took our brand new baby girl home for the first time.   As any new mother will say, it was a scary, exciting time.

I won't say that this 13 year journey has been an easy one, because I would be lying.  We have been through ear tubes (4 sets), tonsillectomy, adenoidectomy, speech and language, physical therapy, occupational therapy, behavioral therapy, and numerous other things that I choose to not mention again.   I have had numerous breakdowns, and got back up on my feet and met the next challenge with strength that I never knew I had.  My strength came from this baby girl who smiled, giggled, babbled, hugged, kissed, and loved her mommy and daddy so much. She was a happy, happy, happy baby, who loved to go for walks, shop, visit friends, eat and be held.  (for the 19 months that she didn't walk)  She never met a milestone on-time, but when she did- I was ecstatic.  

So as I turn in to the mother of a teenager, I will meet all these new challenges with strength, and hope.  I will challenge her, and she won't like it.  I will make her try new foods, and she'll get mad, and I will be the one she will be the angriest at.  These things I am prepared for as a parent of a teenager, and as the parent of a child with Autism.

I am the one who will do these things for you, Phoebe, because baby girl...I love you as much as I did the day you were born.  My hopes and dreams have not changed for you.  You are an amazing, unique, smart, beautiful girl inside and out.  I love your quirky-ness.  Nothing will be easy, but who said life was easy?

Happy 13th Birthday. ;)

The slow slide in to summer

I know.  It's only the end of February,  however I start my annual plight to find summer programming for my daughter.  For my "normal" son, it's easy to find day camps, and fun things to do.  For kids with PDD-NOS, autism, or anything like it...this area has nothing.   I am not exaggerating...there isn't much here for a 13 year old, too high functioning, not functioning enough, too big child - to do.  There can't be anything worse than summer for my kid.  The structure is gone, and the schedule is messed up.  She is, dare I say it, AWFUL in the summer.  Summer used to be a time of relaxation, beaches, fun, and vacation.  For this family, it's a serious cause of emotional turmoil that starts now.  

Most 13 year old children would be able to stay home for short amounts of time at that age.  This does not happen for those of us with kids of special needs.  I am not sure she will ever be able to be alone, and I don't say that lightly.  It scares the heck out me.  Someday, her brother will be able to stay home with her, but I am not even sure I could place that burden on him.  He takes on the weight of the world already, and I am going to try and lighten his load as much as possible as he grows up.  

You can't imagine the cost of trying to get someone to come watch your child for long periods of time.  Last summer, while I was working in a job I hated, I spent close to $200 per week for her.  (and that's pretty cheap!)  This brings me to my original thought of why there isn't more programming for kids like her.  With the statistics growing every day...there seems to be a growing need for summer programs.  She is somewhat functional in school, and has the capability and the need to learn.  She loses more ground than any "normal" child in the summer.  I have tried to think of possibilities for her, and even tried to come up with a plan for day-care.  To be honest, I can hardly take a stinking shower, get dressed, tie my shoes, or blow my nose without her needing me, so making big plans like that is just not feasible.  

So today it begins.  Today begins my annual search for something for this child.  With the constant need for attention, this momma will need some breaks from the daily ASD world of Phoebe.   I will find something, and hopefully I don't have to sell my soul to send her.  

The Ugly Side of Autism

Today, I got that email. The email I get every 6 months to a year that tells me my daughter's behavior is out-of-control. She kicks desks, calls people names, picks at her skin, threatens herself and others, etc. What do you do as the mother? The only thing you can do is feel guilt, and embarrassment. Whether the behaviors are intentional or not, is irrelevant, because they are happening. And, as the mother of this child...you are appalled, and overwhelmed with so many feelings of disparity. The questions begin... Is it puberty? Maybe. Is it Autism? Yes. Is it her age? Maybe. Is it her meds? Probably. Is there a change to her schedule, her home life, her family?? No. (Not that I am aware of) No sooner do I think she might be doing ok--I get my reality check. It's that middle of the year, knows the routine, knows how to get out of work, thing that she does every year. So, we meet as a team, and come up with behavior strategies, and hope for the best.

We don't live in Ann Arbor, or near a big, fancy autism clinic. We live in Saginaw, Michigan. I have exhausted all Psychiatric ideas, and am feeling at a loss. Even her pediatrician recently said, "you may want to take her somewhere else." Good lord, it only took me 5 years to get her used to him!! Are you kidding?? No one wants to help a child with mixed diagnoses. This child is clinically diagnosed PDD-NOS. Sounds fancy...right? Pervasive Developmental Disorder - Not Otherwise Specified. (which means...we don't know where to put her on the spectrum) We have tried nearly ever med we can think of for behaviors, impulsivity, ADD, and anxiety. What do I do next? I guess a visit to the University of Michigan Autism Clinic might be on my list next. They claim to have Psychiatrists and Psychologists, who know about PDD-NOS. It's only an hour away, and I'd have to go every few months to keep up on visits. Easy right? I'll fit that in between my 12 credits, dealing with my other child (oh yes, forgot about him:), trying to sub, keeping up with housework, homework, etc. (and yes...this is my venting blog) Sure- that's feasible!

With 1 in 100 children diagnosed with Autism - it seems like this (somewhat) large town, near Dow, would have a lot more resources. What is working for other kids with PDD-NOS? What isn't working? I plan to research and look in to new things. (In my spare time) I will go in to the behavior meeting with open ears, and ideas. I always have hope that these things will work. I want my daughter to succeed in whatever she does.

However, I'm tired. Tired of Autism. Tired of PDD-NOS. Just plain tired, and that's the ugly truth. Can you imagine what it's like to be her?

Tomorrow is another day.

Teenager-ness and Autism

In a few short weeks I will have a teenager. A teenager with autism. Having a teenager (as I have heard) is challenging enough, but having one with autism might just be the biggest challenge ever. I am not expecting huge changes, but I am wondering what the future will bring for her. This child will have the age, body, and look of a teenager, but the mind of an 8 year old. (at best) This "teenager" will still watch Blues Clues, and love football, UNO, and getting tucked in by her mom, and brother. She will also still scream at me like no other, hit things with full force, cry like a baby when I don't give her the food she wants, and tell people..."my mom smacks me a lot." I have learned to roll with her differences, and laugh when others are staring at her like she is an alien.

My biggest fear, and sadness, is that this teenager doesn't have a group of girlfriends, and it's what she wants most in life. She isn't texting friends and making plans for the weekend. She isn't getting 30 phone calls a night to talk about "stuff." She isn't talking about boy crushes, or who's dating who, or even what is popular or unpopular at school. She doesn't want to shop all day and hang out with me at the mall (all trivial, but likely with teenage girls) She does have mentors at school, and they are wonderful young ladies. They do things with Phoebe at school, and go on Community Instruction outings, as well. It takes a strong, and mature girl to want to help out a child with autism. (and I love these young women for doing so)

These things mentioned are traits that I am most likely to miss out on. (Maybe that's not such a bad thing?) I am not sad for myself, but I am terribly sad for her, as she wants what ever teenage girl wants. Friends. My job in the next few months is to facilitate this for her. I need to work hard to figure out how to get her involved in new experiences, and to find some friends. This will be hard on everyone, but crucial to her well-being (and mine).

I will continue to help her as best I can, and fight both autism and teenager-ness. I'll wonder which is worse, and wonder if I'll ever get through it. But, no matter how hard it is on me...it's way worse for her.

Band of Mothers

This Sunday I will meet with 8 of my favorite ladies in the world. Each year, for the last 6 years out of 12 - we have been getting together for dinner or lunch to reminisce, get the updates about kids, etc. How do I know these women? When each of us had our first babies in 1999, we were grouped together by Beaumont Hospital in the suburbs of Detroit. It was called a "playgroup", and our first meeting was in July of 1999. (Each of our babies were from 3-5 months old.) We started meeting every other week at each of our houses, sharing milestones, stories and just generally enjoying each others company. We were all first time moms, and things were so new...it was nice to share in those experiences with such a great group.

It is with this group, that I noticed so many differences in my baby, as compared to the other babies. One of our girls brought her baby to group around the 6 month old age, and sat him in the middle of the room. He was up on his knees and just about crawling. At this age, Phoebe wasn't even sitting up yet, or had yet to roll over. She was "large, and big babies don't do things early" (Doctors words). I learned to live with these differences. She was chubby, cute, and entertaining. This went on for a few years...and I learned to add a year on to Phoebe's development time as compared to our playgroup friends. Phoebe was always sick, and had pretty bad asthma as a toddler. She was in and out of the hospital a few times, and had about 30 ear infections. These playgroup moms became my support, my laughter, my fun, and a great social outing for Phoebe. We had Halloween parties, Christmas Parties, Birthday parties, "mom's weekend away" (for headbands, drinks, laughter, shopping and bars) etc. It was such a fabulous time.

Most of us had 2nd, and 3rd children- and we had all been there for the ups and downs of pregnancy, showers, and miscarriages. This group was the FIRST group to hear of my divorce, and I could not have lived through it without them. They helped me pack, and move home. They kept my spirits up, and kept me laughing. The day I had playgroup and made the announcement that my husband and I were divorcing- I can remember on of my playgroup friends saying..."I NEED SOME CARBS...give me a bagel." (My atkins friend) I laughed at that, and still think of it. As years went by...the kids all started school, and we got together less, and less. This is just the nature of friendship, and the nature of having children, and having families. We kept up with the statistics...having some of us divorce, some of us move, lose jobs, get jobs, and hopefully someday re-marry? (that's a joke:)

As our children get older I hope that visits and outings will become more frequent. Facebook has helped us keep in touch, and see what these beautiful children have grown in to. It's still hard to believe that we have 12 year old children - that are close to being teenagers! I would not be who I am today without these ladies.

This Sunday we will get together and a few short hours will go by so fast, just like the last 12 years.

Love you ladies. :)

I've heard this before...

Sometimes I joke about living with Phoebe, and her autism. Sometimes you just have to laugh, because there really is no other way to cope. There are days I feel as though I am living in the movie "GroundHog Day." Autism is very routine, and very structured (so they say).

Each evening at 11:00 pm, Phoebe surfaces from her room looking very sullen and tired. Usually it's just to get a drink or stand and stare...but nonetheless it's EVERY night. I can count on that. In the morning, I am awakened to the sound of Phoebe knocking on my wall at 6:00 am. Sometimes, this time can vary, (5:30 am) but not by much. This is accompanied by the light in the hallway turned on. She asks..."can I have my apple now?" I get up and get her the apple and then she says..."it's too early to take a bath..right?", and I reply "no, go ahead." I lay back down for a few minutes until she comes out and says..."am I going to have to get Brendan up?" That's my cue to get my butt out of bed and begin the morning. These things are said on a daily basis- so if I seemed confused later about what day it is...you know why.

Once she arrives home off the bus, she says the exact same thing she has said for the last few years..."what are we doing tonight, and what's for dinner?" Some days I answer a normal answer like..."we are hanging out at home, and having chicken." Or some days to spice it up I'll answer "we are running a marathon, and having rat for dinner." This usually gets a very blank stare, or a crooked smile that says..."SERIOUSLY?" I have to correct myself or this might throw her right over the edge. (not to mention me as well) Then she usually follows up a reply..."I was good today can we go see Riley (her cousin)." I get the question about Riley every day, multiple times a day. I have made the rule that we don't see her during the week because of school and homework. This seems to keep Phoebe happy until the next time she asks.

Evenings are no different, and sometimes I say to my kids..."LOOK KIDS...BIG BEN, PARLIAMENT." (reference to European Vacation with Chevy Chase) Phoebe always has a 1/2 sandwich after school with a few pretzels and then throws a fit when she can't have dinner with us. I have tried every technique known - and she still gets mad as heck when she can't have 2 dinners. (Ignoring seems to work best.) Then she will go to her room, watch sports, and at 7 pm ask for her medicine so she can go to bed. This part of the evening can change here and there, but the words are almost always the same every night.

There are so many more that I could write, but you get the idea. Life with autism is "GroundHogs Day" over and over again. This morning on her way to the bus Phoebe said.."Mom, if I'm good today can we go see Riley?" and I replied "you're always good Phoebe, and no we can't." She just smiled.