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:)

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.

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.

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:)

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.

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)

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.

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.

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)

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!