Thinking of you today

My heart is aching for a friend. She got scary diagnosis number three today. I imagine even though this time around she knows the next steps, it doesn't make it any easier. She is such a strong, beautiful momma and is perfect for her boys who need her to guide them on their journey.

It brings back so many emotions for me. I refer to that day as "D-day" in the life of our little family. I both wanted to hear that my assumptions were wrong and also that they were right. It was such a strange dichotomy, and I'm sure other spectrum parents can relate.

The internet has been so wonderful for me. Its been my educator, my outlet, and my lifeline to others who really know how I feel - who can not only sympathize, but EMPATHIZE, truely having been in my shoes and blazed a path before me. They also see through the surface and know  how amazing these kiddos are. I am so thankful for all of the friends I've made along the way. These friends make our life seem not so strange. They help me with the hard days and celebrate the little victories along the way. They point me in the right direction and help to direct my perspective and energy toward positive things.

This friend in particular. We've never met, but I hope our paths cross one day. Love to you and your three boys.  They are made in God's image and are perfect in His sight. And in mine. And so are you.

Thoughts on Temple Grandin’s Talk

I have wanted to go to the Indianapolis Art Museum since I moved here almost ten years ago and I finally got my chance.  But not to see the art exhibits, or the surrounding 100 acres of gardens.  We went to one of a series of talks hosted by the IMA and given by Temple Grandin! 

Josh and I were lucky enough to obtain tickets (thanks Jane!), dropped Liam off at Ga-Ga and Big Dad’s house, drove to the IMA, and found our seats.  I was really curious to see and hear Temple speak.  I have read a couple of her books and have read a lot about her, but I was still excited to actually see her in person.

She got up on stage and started talking.  I was amazed at how much she had to share.  She certainly could have filled the entire SERIES of talks, and instead had to squeeze what she wanted to say into one measly hour.  I was also struck by the fact that she was funny.  I didn’t expect her to make jokes about autism or people on the spectrum, but she did.  My favorite was her description of the spectrum itself.  She said on one end there were the really severe cases of people who may never speak or have real relationships or be able to hold a job, etc., and on the other end are geeks and nerds.  The way she said it so casually was funny to me.  I have spent the last year or so in some sort of a fog thinking that Liam’s diagnosis was the worst thing that could have happened to him and to us.  Temple doesn’t feel that way at all.  She thinks that the world would be a pretty tragic place to live without the people on the spectrum lending their perspectives.    

She described herself as a visual thinker. She said that she basically has endless amounts of hard drive space in her brain where she stores pictures of everything she has ever seen. They are filed away into categories. When someone says “dog” or “church steeple”, pictures of every dog or church steeple flash through her head, like a Google images search. She said that she can stop on any one photo and it will turn into a movie, playing out possible scenarios. Her knowledge and ability to understand is limited to what she has stored in her files.  Therefore, it is SO important to get these kids out and about and expose them to as much as possible.  We need to build up their little hard drives so they have more to draw from later in life.

At some point, I started taking notes because I didn’t want to forget some of the things she said that I was really struck by:

1. If you’re going to teach your autistic child to look both ways before crossing the street, teach him to look both ways at ten different streets so he can begin to generalize it. 
2. Visual thinkers like Temple have bottom up thinking instead of top down thinking like verbal thinkers. They don’t picture the house and then decide what pieces it needs…they think about each individual piece and eventually get to the whole picture. They fixate on details. 
3. Temple can’t hold one thing in her mind while manipulating another piece of information.  Case in point: If I ask Liam to go get his shoes, then ask him some question, and he answers the question, I shouldn’t expect him to remember that I asked him to get his shoes.  Sometimes I forget this in the morning when we're rushing to get out of the house. Turn off your light! Put on your shoes! Say bye to Daddy! Where's your coat? Paralysis....
4. Temple was shocked to learn that others didn’t think like her.  Maybe we are approaching this whole thing wrong. Maybe we shouldn’t be trying to “fix” how Liam thinks, rather figuring out how he thinks and approach his education from a direction that he understands!
5. If visual thinkers and verbal “typical” thinkers work together, amazing successes can be achieved. The two ways of thinking compliment each other and serve to cover all angles of an issue. Imagine a beautiful bridge or building where someone forgot to focus on the details. It could be disaster!

I am still processing so much of what she said that night because SO MUCH of it seemed to apply to my sweet boy. I really saw him from a different angle that night. I have struggled immensely with this diagnosis, but Liam is still Liam, as I’ve said before, and the diagnosis is just a terrifying word. His mind works differently than mine, and my job as his momma and his sherpa in this life is to see things from his perspective.  I always say I wish I could get inside his little head.

Maybe this is a start.

Thanks Temple.

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????

D-Day

(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.

Diagnosis:

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...