Wednesday, April 27, 2011

The Gum Situation

“Mommy Can I have some gum?”

I love hearing those sweet little words.  Six words in a row that form a complete and polite and perfect question.  Not only that, but it’s a question I rarely feel the need to say no to!  I have said no, but really, who needs four pieces of gum in five minutes time?

Liam LOVES gum.  All kinds of gum.  It can be big or little, soft or hard, minty or fruity or cinnamony or sour.  He loves it all. I used to think he didn't really know what kinds we had or what kind he is given to chew.  I have realized that I was dead wrong.  We have had a recent influx of gum due to the Easter bunny’s visit and the arrival of a package from Grandma and Grandpa, and no two packs were alike.  The gum section of the cabinet is now overflowing.  In fact I am looking into a new storage option since I usually have just one pack of gum open at a time…and apparently that isn't enough.

Last night Liam asked for green gum.  I pulled out the open pack of watermelon.  He said, “No! Apple!” I responded, “I don’t think we have any apple gum, buddy.  Just take this.”

[Insert minor freak-out here.]

“Fine, Liam.  Get a chair and show me.”

[Insert dragging of chair to cabinet.]

“This one!!”  He exclaims while handing me a brand new pack of apple gum.  How the heck did he know it was in there and I didn't?  You’d think by now I’d have learned not to doubt him. :~)

Wednesday, April 13, 2011

A True Testament

Tonight there was a fundraiser for Liam's center at Monkey Joe's.  This is exactly the sort of place I would have NEVER attempted to take my sweet boy a year ago - or even six months ago!  Tons of loud kids all running around like maniacs and drinking caffeine and eating pizza.  Not to mention the climbing, jumping, sliding, bouncing, and other assorted mayhem.

But we went.  For an hour.

Liam LOVED it.  He would have stayed all night.  I loved it too because he wasn't as bothered by the chaos and noise as I expected him to be.  Granted, its a big place and it was a weeknight, so I imagine it gets way worse...but still.  He was amazing.

I was talking to one of the therapists who was there.  She made a very casual comment about how much fun Liam was having.  I fought back tears as I told her what a testament to the center's work in his little life this night was.

In our house, we celebrate the small victories.
Keep climbing Liam!!

The Here and Now

(Re: Right Now!)

Now you are all caught up. That is the short version of the beginning of this journey. 

Liam receives one on one therapy all day, every day, and he is thriving!  They started out by figuring out what skills he had, and started filling in the ones he was missing piece by piece.  We are six months in, and everyone says they can see a difference in him.  

He not only loves his school and his therapists, but is doing so well!  He is gaining so many skills and is starting to figure out how to interact with his world.  He has a long way to go, but we are definitely on the right path.  We will postpone his entrance to kindergarten until the fall of 2012, so that he will have a solid foundation of ABA under his tiny little belt. 

I have my ups and downs.  I go through periods where I am very optimistic about Liam’s future, and I go through very dark times as well.  I have a lot of guilt.  I cry a lot.  I read a lot.  I talk to everyone I can about their experiences.  I worry about the 80% divorce rate of couples with autistic children.  I worry that other people will be mean to Liam.  I wonder why this is happening to him.  Josh handles it better than I do.  He doesn’t worry so much.  His approach is to take what we’ve been given and what we have to work with and move forward.  He is my rock.  

The Rest of the School Story

(Re: July – September 2010)

I got back to the office and prepared my appeal to the insurance company who had initially denied coverage to Liam because we didn’t have a diagnosis and sent that on its way. (Many other details of my glamorous life of phone calls and paperwork have been removed so I don’t lose your attention.)

Several days later, I received a call that they would be extending coverage to Liam!!

Two pieces of our puzzle were finally in place. We had a diagnosis and an insurance policy to help us pay for Liam’s care!!  Too bad the school I had intended to send him no longer had an opening…..

Luckily, there are a few other center-based ABA therapy programs in the area.  We selected another one and began their enrollment process.  They are located much farther away, but they offer transportation!  Liam started after Labor Day.  I meet the van at a CVS Pharmacy near my office in the morning and the afternoons.  The van takes him to the center and back each day. 

We were so blessed that everything worked out like it did.  Nevertheless, I was pretty terrified to send Liam off to this therapy center all day everyday in a van driven by some guy I’d met once.  Not to mention the ever-lurking fear of what comes next????


(Re: June 30, 2010)

D-Day is how I refer to the day Liam was given a shiny name for his issues.  We loved the neurologist that we chose because she had the earliest appointment.  Liam loved her, and I truly think he knows about people, even if he can’t always show it.  We all talked for a long while, and she watched Liam be Liam.  She kept saying “these kiddos”.  I finally asked her what she was going to do, diagnosis-wise.  She rattled off several official and scary sounding disorders and explained what they all meant.  I asked if they were on the spectrum.  She said that they weren’t technically on the spectrum, but that there was definitely plenty there to put him there.  She said that she doesn’t like to simply give one of the spectrum diagnoses because they encompass SO MUCH.  She said all of the other big words she gave him and more descriptive of Liam specifically.  She said its not about the diagnosis, its about what will help Liam.  She then recommended and prescribed ABA therapy.  I told her that I had been researching and I knew that without a diagnosis on the spectrum, we didn’t have a shot in hell of paying for ABA therapy.  So, Pervasive Developmental Disorder (PDD) it is. 

Let the Research Begin

(Starting May 2010 – the rest of my life)

Now we know that there is a “high likelihood” that my child “may be a child with autism or Asperger’s”.  Fantastic.  Now what? 

On my way from that meeting back to work, I stopped by a school for kids with autism nearby called Little Star.  I had previously run across this school “accidentally” in a search for preschools near my office.  I no longer believe that it was coincidence that I knew about it.  They laid out for me everything I would need to do to get Liam enrolled.  The school provides ABA therapy for their students, which I later learned is really the only proven type of treatment for autism.  First things first, we would need an actual diagnosis.  Secondly, we would need to figure out how we were going to pay for it.  They pointed me to all of Indiana’s state specific heath insurance laws and guided me in what questions to ask of our current health insurance policies.


This would need to come from a developmental pediatrician or a pediatric neurologist.  We had already scheduled an evaluation with the developmental group at Riley, the local children’s hospital.  The appointment was set for August, more than three months away.  Someone I ran into (another coincidence, I’m sure…) suggested I call everyone on our current health plan who could make the diagnosis and see who had the earliest appointment.  Admittedly, this may not be the best way to select a medical provider for one’s offspring, but each day that passed felt like I was losing my child further into this unknown chasm.  I found a pediatric neurologist with a June 30 appointment, and scheduled it. I didn’t cancel the other, more comprehensive evaluation just in case.  Some doctors were scheduling a year out. A YEAR!!

How to pay for it:

I won’t bore you with how many phone calls and faxes were actually made and how many hours of research I did, but here’s what I found out: Health insurance policies written in and governed by the state of Indiana are required to pay for treatment for autism.  However, Josh and I are both covered by self-funded health insurance policies, which basically means they get to pick and chose what they cover, and neither covers ABA Therapy. So we found a private policy for just Liam that does and filled we applied for the coverage.  In case you’re wondering why we just don’t pay for it ourselves, Google it and you’ll see that we simply wouldn’t be able to afford it on our own.  After almost six months, I still almost puke when I see copies of the bills. 

The plan:

We had two plans in place, one for each possible outcome. 

Plan A: If we get approved for the insurance policy, then Liam goes to a full time ABA therapy center. This was best case scenario for Liam and for us logistically.

Plan B: If we are not approved for the insurance policy, then I quit my job, Liam goes to the half day program in our school district while I am home teaching myself ABA therapy, which I then do with Liam in the afternoons.

Both plans assume diagnosis on the spectrum because by this point I had entered Google University and read every book available at Borders, so I was pretty sure it would happen.

All of our balls were rolling, we just had to wait and see where they ended up...  

Tuesday, April 12, 2011

The Meeting

(Re: May 2010)

Shortly after receiving the written results from Liam’s Early Intervention Evaluation, we went to out first Case Conference.  I was expecting this to be the day that the professionals gather together and let us know how we can best help our child. 

Boy was I wrong.

Josh and I both attended, along with the preschool teacher who did much of the evaluation, the speech therapist who saw Liam, the psychologist who brought up the A word again, and the special education director from our school district.  They started out by essentially reading the written report that had been mailed to us. Come on, I’d had it in my hands for 5 days, I had practically had the thing memorized.  Then they said that Liam qualified for the developmental preschool in out school district, which was held every day during the school year, for half a day.  There would be about ten children, and the teacher in charge was roughly nine hundred and forty years old.  But she had aides to help her.  Then they proceeded to set ten goals for Liam to reach for during the following school year.  This didn’t feel right.  It was MAY. They were telling us that our child has some sever developmental challenges but that they couldn’t help him until the following school year.  Even then, the attention given to Liam would be limited, and their goals could hardly be called goals.  Josh asked if this is what they thought was best for Liam.  The special education director looked at Josh and managed to say with a straight face, “We have autistic kids in our program.”  Ummm that’s not what he asked you, lady!! 

Needless to say, we didn’t sign anything.  We told them that we were pursuing this privately as well, and that we would be in touch.  The school psychologist followed us out and told us (off the record, of course) that she thought it was a good idea that we pursue this privately if we had the means. 

We stood outside in the parking lot just looking at each other.  Josh said, “It looks like we’re on our own.”  I said, “Yep, it sure does.”

Saturday, April 9, 2011

A Moment of Honesty

(Written Spring 2010)

Sometimes I’m resentful.  There.  I said it.  Well kind of if writing counts, which I think it does.  We’ve never been quite able to do things other families do. 

We had a recent train wreck while attempting to go to church.  I took him to Sunday school.  I thought he would be fine since his favorite person in the world – Kara, AKA KK, was there too.  So Josh and I are sitting in the sanctuary and  hear this loud kid.  I look at Josh,  “Was that Liam?” I whisper.  “Nah,” he says.  Then, “Yeah, maybe.”  So I go look.  Sure enough, there he was in the classroom of 20 or so kids, all the rest sitting in chairs around some tables, he is just standing there yelling.  Not mad or upset, but seemingly unable to be a regular kid like the others.  The “teacher” who was doing a wonderful thing giving her time to the children and thus serving her God, had no idea what to do with him.  So I stayed and sat with him, he kept it together after that. 

We tried again another Sunday, and that was equally disastrous except worse because when we tried to leave – before the service was over – we were parked in.  I cried all the way to Noodles where Josh was taking us for lunch to try to salvage the day.  I feel like I need to be going to church.  But now we can’t because Liam can’t handle it. 

So there.  I said sometimes I feel resentment.  But then I look at this precious boy and I get over it.   


(Written Spring 2010)

The first time he seemed like he was responding to music was when he was TINY.  Sometime while I was still home with the crying baby.  Josh put on Elton John andhe just settled down.  Like he was listening and liked what he heard.

Later, he enjoyed Elvis in the car.  I thought it was funny that he preferred regular music to kid music, but I was definitely okay with that!

From the time he first heard Taylor Swift Romeo and Juliet, that is the song he asked for.  “Jewee-et.”  I think of him now when I hear on certain line in that song: “Don’t be afraid, we’ll make it out of this mess.”  Luckily, he’s not afraid.  It’s just me.  But I need to be strong.  For him.

He also likes Dave.  Okay, maybe I like Dave and he therefore has to listen.  He really does like the song You and Me.  Again – I drew strength from this one and don’t mind one bit when he says AGAIN! SONG! AGAIN!  You and me together, we can do anything.  I’ll try to remember that, kiddo.  I’ll try. 

The Report Came

(Re: Spring 2010)

The Early Intervention assessment team’s report came the Thursday before our case conference that was scheduled for a Tuesday.  My eyes went straight to the A word.  The big one.  The ONE THING I was most afraid of.  Officially, they can’t diagnose him.  But his scores indicate that “the probability of autism is very likely.”  Also, Liam’s Asperger’s score indicates that “the probability that he is a child with Asperger’s is high, or probable.”

I was okay at first.  Then my head started going.  The first thing I thought was, well there goes having another baby.  Also, Sheridan schools can’t possibly offer what he needs.  I should quit work.  No, wait, I have to keep working so we can afford whatever treatment he will need. OMG, my BABY!!  He is going to have such a long road.  WE are going to have a long road.  Wait.  This isn’t official.  They can’t diagnose him.  But they may as well have.  They don’t WANT there to be anything wrong, either.  A kid with issues costs a school more than a regular kid.  Oh shit he’s not a regular kid. Shit shit shit.  Wait.  How did this even happen?  We didn’t do anything wrong, right?  RIGHT?? I can’t think of anything.  I did drink before I knew I was prego.  He had all his shots, is there some truth to that theory?  He had colic, but so did I and this didn’t happen to me.  Josh says we can’t possibly have caused it.  He says that people who are devoting their lives to studying it don’t know what causes it.  Maybe somewhere down the line we’ll find out that we did something wrong, but for now, no.  He said that this isn’t the result of something we did. 

Then he said something else.  Something wonderful. 

Something that made me thankful that he is my partner in all of this: “Becca, we just have to do our best. And we’re GOOD.” 

Liam is still Liam

(Written Spring 2010)

I am so worried about what those people are going to say about Liam. I NEED to know what we are dealing with.  We have decided, though, no matter what, that it doesn’t matter.  Liam is still Liam.  He is our sweet, perfect boy.  He was created in the image of God and is the product of our love.  We are a family and will deal with whatever this might be in whatever way we need to.  Bottom line – whatever Liam needs to become a happy, well-adjusted, contributing member of society, we will do. 

And I’m going to try not to cry in front of him because I’m guessing that won’t help…  

Dear John

(Re: Late Winter / Early Spring 2010)

I saw the movie and read the book Dear John by Nicholas Sparks.  Want to know what stood out to me?  Not the awesome love story.  It was the description of the kid’s dad who has Asperger’s.  It was the first I had heard of it.  Also an A word, but maybe easier to live with.  This guy raised a child in the book, after all.  And he had a job and lived a regular life.  He was intensely interested in coins, to the point where that is all he wanted to do, talk about, and read about.  He had difficulty in social situations – unless you could get him talking about his coin collection.  It reminded me do much of Liam and his train obsession.  The seed was definitely planted in my head that it was a very real possibility that my Liam shared this A word with this fictional character. 

My tears throughout the book and the movie held much more than a reaction to the storyline.

They held fear for my child. 

Sickness and Bad Decisions

(Re: Late Winter / Early Spring 2010)

Cutting the old lady loose – for good this time.  Liam was sick over the winter after he turned four.  Fever, first ear infection, burst eardrum, more fever.  The trouble with fevers and preschool?  He can’t go if he’s had a fever in the last 24 hours.  The trouble with that? No back up.  So we decided to build in a back up plan.  So, back to the old lady a couple of days a week.  Well, that lasted all of a couple of months.  One place had rules and structure and the other didn’t.  And behavior at home – well that got worse too.  Yikes.  Sorry, we know you love Liam, but we have to cut you loose.  I feel badly that I didn’t give her more notice, I really do.  But when it comes to Liam, we are going to do what is best for him.  Period.

That Call from School

(Re: Late Winter / Early Spring 2010)

In the interest of socialization, structure, and draining the checkbook, we enrolled Liam in preschool.  They will get him caught up for sure.  He will see the other kids eating with their forks and peeing in the potty and he’ll want to do it too.  About six months in, he was in the four year old class.  I got a call from school asking to set up a meeting with us.  I asked what about.  The director proceeded to tell me that Liam is performing below a three year old level and that they thing he needs more help than they are able to give him.  Uh oh.  This isn’t going away.  He’s not catching up.  They suggested we find out who in the school system can do an early intervention evaluation.  Of course they didn’t know who that might be since we live in a different school district.  Luckily, I had a friend who knew who I should contact. Thank God for her.  I’d still be trying to figure out who to call.  So I called this “parent contact” lady.  She asked lots of questions about Liam and mailed a mountain of paperwork to fill out.  Phew.  Made it though without my hand breaking off.  His evaluation – two 2 ½ hour days of “preschool” where several experts in different fields analyze my boy – was scheduled.  This presented what I’m guessing is the first of many logistical challenges.  Josh dropped him off and I picked him up and delivered him to his actual preschool 20 miles away.  The first day when I got there to rescue him from all of the mean people….I mean to pick him up and make the transfer….the psychologist asked if I had a minute. Shit. Not really, its 11:30, Liam has to be at school by 11:45 for lunch, and I have to get back to work. But for this – of course I have a minute. For Liam I have the rest of my life.  Then, she became the second person to mention the A word in connection with my perfect boy.  Have I considered it?  Sure.  But you are a professional and if you are considering it…GULP…this is not happening…PLEASE NO this CAN’T BE HAPPENING.  The next couple of days were difficult.  We decided to attempt to figure out what is going on privately as well and started that process.  (Another mountain of paperwork).  Now we wait. 

The First Mention of the A Word

(Re: Fall 2007)

Liam started out behind the curve.  He was born a little early, was tiny, had issues with colic, and spent most of the first months of his life crying.  Poor thing.  We tried several formulas and landed on soy.  Not sure if that helped of or if he grew out of it on his own, but he gradually started being awake without crying.  I remember snapping out of my own funk at about that time too.  He was always small though, and was late talking – we started signing at about nine months and that helped.  Eventually he got there.  He was late walking – but he walked.  He was a little behind on some things that he was “supposed” to do.  But all kids are different and do things at different paces.  That’s what I thought and that’s what the books say.  My parents were the first ones to bring up the A word.  It was shortly before his second birthday and his two year well child exam.  This came from two people who didn’t see my child on a regular basis.  I felt like they were comparing him to their neighbor’s boy who has an older brother, and  went to daycare where he is around other kids all day long. So I asked the pediatrician about it, mostly to appease my parents. She did not think the A word applied either, but suggested an evaluation with First Steps, the government run early intervention system in our state.  I didn’t want to because I have never wanted to be the mom who has her child poked and prodded and analyzed at every turn.  But we did. So they came to our house and spent some time with my sweet boy.  They ended up confirming that he was behind developmentally, but that they didn’t see any signs of autism.  They agreed with us that his being behind was likely a product of his daily situation with the old lady babysitter.  So we agreed that with some socialization, he would catch up in time for kindergarten.  We didn’t dig any deeper.

Not My Son

(Written Spring 2010)

Not my son. I am a smart woman.  I was a smart child. My husband is a smart man.  We are good parents.  We read to him, play with him, talk to him, travel with him, show him things.  We do more for and with him than most of our friends do, save those lucky moms who stay home. We are both well adjusted, level headed people.  We come from good families.  He is not surrounded by turmoil, chaos, disappointment, or even sadness.  He has everything he needs and wants.  He has two involved parents – one mom and one dad.  How can my son be having trouble?  There isn’t anything wrong.  He is just behind. But he will catch up.  I’m sure of it.  He will be one of the oldest in his class, so by then he’ll be fine.  I think.  I hope.  Maybe.  Oh god, what if he’s not???