Saturday, November 19, 2011

Cooking with Liam

Liam has started to want to cook with me. Cooking with Liam is much harder and takes much longer. I wouldn't have it any other way. It is so worth a delayed dinner to do something constructive WITH him rather than keeping him occupied while I do it without him. I'm thrilled to be able to involve him in my favorite hobby. "We" even won the chili cook-off at my office!!

Friday, November 11, 2011

One Year In...

We have hard days. I still struggle on a regular basis with my thoughts about the whys and the hows of autism and what the future holds. I have a hard time taking one day at a time, one challenge at a time.

Then there are the good days. The days when I can see Liam breaking out of his shell. The days when I can see him interacting with his world and the people in it. The days when I can see how far he has come. The days when I get to see other people love on my child.

Liam has been attending the ABA therapy center for a year. He is now asking questions and making eye contact and generally trying to be involved with things that I was pretty certain he was completely oblivious to a year ago. People who don't see him often tell me they can see improvement with each visit. My most recent meeting with his program coordinator was fantastic. She said that she has a hard time with his program because he is currently acquiring skills so quickly. We attribute much of this to his current therapist. She has been with Liam since earlier this summer, and he has made drastic strides since then. This to me is such an amazing testament to having the right people involved.

The sweet man who drives the van had our family over for dinner. It turned out to be a little birthday party for Liam which included his therapist and a couple of other people from the center. They had spent their whole day working with Liam and other kiddos like him, and then spent their evening with us. It was heartwarming to witness the genuine love that these people who were previously strangers have for our son. I couldn't believe it. Liam's village is expanding to include such a fantastic group of people and I can't help but smile.

We had a birthday party for Liam too. We really haven't attempted that the past few years because Liam usually doesn't deal well with that sort of event. We decided to give it a try this year for his SIXTH birthday, but we did it Liam style. No organized unwrapping of gifts, no forcing everyone in the same room together for singing and cake. We invited family, and a few friends - all of Liam's people. I had so much fun preparing and Liam had a blast. We let him do his own thing, going inside or outside, everyone ate when they wanted and got their cupcakes when they wanted. We had a fire and a hayride. It was a perfect fall day and a very easy and peaceful night. It felt really good to have a  party for our son, who truly seemed to "get" for the first time that it was his special day, and his special party. I think maybe this is what this is supposed to feel like.

I intend to put in a concerted effort to focus on the good things instead of dwelling on the scary things. Instead of obsessing over the bad days, I will be thankful for the good days and keep looking forward to the next one.

Happy birthday to my sweet Liam! 



He Has His Momma's Eyes

We had another appointment. This one was for Liam's eyes. When he was one, we made a visit to a pediatric opthomologist because one of his eyes appeared to be turning in. At that time, it was determined that we would keep watching it, but that he should grow out of it. We followed up once several months later, but everything looked good, so that was that. At Liam's last appointment with his neurologist, she suggested that we go back just to verify that everything is still okay since he was beginning to focus more on reading and writing. Also, I am severely nearsighted, and my hubby is nearsighted as well. I've had glasses since I was six, so that had been on my radar as well.

Off we went. Liam did great, even with having to get his eyes dilated. His eyes are physically fine. To no ones surprise, however, he is definitely nearsighted! I guess he has my eyes not only in color, but in this way too. Poor kid!

I was worried that he wouldn't keep them on his face since we have never been able to get him to leave sunglasses on. He struggled for the first couple of days. At some point, though, I think he realized that he can see better with them on. He just keeps taking these things into his stride and keeps going. What a great kid!





Summer is Over?

I can't believe there are Christmas decorations out in stores..its only August...oh wait. It's November. The 11th of November. Yikes. Here are a few pics from our fun summer. Which is apparently over. 

For starters...we got a new puppy. A yellow (although closer to white) lab who we named Milo. This makes three, and Liam is in heaven. 




Liam started riding horses. This is him on Sheba, though he is now mostly riding a lovely fella named Spice.



 Did I mention we got a puppy? 
He makes Sherpa / Mommy happy too! He is currently seven moths old and 70 pounds...



Liam rode his bike in a race. He didn't win, but had FUN!               










Liam discovered waterslides on our vacation to Yellowstone. Six hotels in eight days and he was a trooper!! 



Happy / Sad

Liam is learning about emotions and how do determine how people feel based on their facial expression. He was upset about something the other day and said, "Mommy, I'm SAD." Then he made this face:

Of course I began laughing and couldn't stop.

I asked him to show me happy and I got this:  
This isn't what he looks like when he is actually happy, but it was fun to see his interpretation!

These are things I never anticipated having to teach my child. Nevertheless, it is rewarding to see him learning and growing every day!!

The Dreaded Appointment


(Re: July 2011)

Pediatric dentists want to see babies when the first tooth appears, but the first visit is not  to be completed by the first birthday. They will make sure everything is developing properly and quiz the parents about whether the child is put to bed with his bottle. It also begins to establish a familiarity with the process. Most people, including my dentist, recommend taking a child to the dentist for the first time around age three, because by then he has all of his teeth.

I scheduled an appointment for Liam shortly after his third birthday. We didn’t go. Liam had been sick and was a crank, and I didn’t think that would be the greatest timing. I scheduled another appointment shortly after Liam’s fourth birthday. I had to cancel that one because it was the same day as his early intervention evaluation. Then I was just plain terrified. I was certain that Liam would melt down at the dentist. All of the smells, sounds, lights, tools, and hygienists talking in their best “kid voices” who mean well, but in would freak out my kid in their attempts at being “fun”.

Liam’s fifth birthday went by, and six months of ABA therapy went by. We’ve all learned a lot about sensory inputs and how Liam responds. We’ve had some success desensitizing him in some cases. Fro instance, I can cut his hair in one sitting instead of three. He still doesn’t like it, but he lets me get the job done. I still don’t think I could take him somewhere, but probably wouldn’t anyway!

No five year old should go without a visit to the dentist, especially one whose mother has HORRIBLE teeth. I located a dentist who has experience with autism, and more important, will tailor their approach to make every kid comfortable. I filled out all of the paperwork and told all of Liam’s secrets. I scheduled another appointment – this one we were keeping. No matter what.

I started preparing.

I bought books to read to Liam. We talked about going to the dentist and what would happen. We Googled pictures of people at the dentist so he wouldn’t expect everything to be exactly like Dora’s or Spongebob’s accounts. We practiced opening wide and counting his teeth. We talked about the big chair that moves, the light, the sink, the tools, the sounds, and the new toothbrush at the end. A month later, Liam was excited. We were as ready as possible.

When the long anticipated day finally arrived, we went in and were greeted by a welcoming d├ęcor – part tiki hut, part tropical rainforest. We waited only a few minutes and were called back. They led us to a private exam room. Liam explored everything. He pointed to things and told us what everything was and what it was for. The hygienist smiled at me and said, “You’ve been getting ready for this for a while, yes?” Yes. You have no idea. Yes.

Once Liam had adequately checked everything out, the hygienist asked him to climb into the chair. He hopped right up. She moved Liam up and down a few times, then leaned him back. She turned the light on and of and gently angled it so as not to shine it in his eyes. She let him taste the toothpaste and see the spinning toothbrush. She turned on the toothbrush and touched it. He touched it. She didn’t think it was weird that he rubbed his cheek on it. Then she began. She was perfect. She let him call all of the shots, stopping when he needed a break, giggling at how his tongue kept getting in the way. The dentist came in and was equally perfect with Liam.

I was impressed at the ability of the entire staff to be so accommodating, I was certain that this would be a horrible experience and was ready for the daddy of all meltdowns. I was SO relieved that this went so well.

And Liam. LIAM. He was so awesome. I learned that with enough of the right preparation, we can get through anything. 





Tuesday, June 14, 2011

On Kindness

I have expected that it would happen.  I have been preparing myself for it.  I have considered the possibilities.  I have thought about the proper response.  But it has not actually happened…until today.

I know that Liam will get made fun of.  I know that he will be teased.  I know that kids are mean and lots of adults are, too.  I don’t know whether Liam will understand when kids are making fun of him or not.

Today was a beautiful day.  I had left work and was parked at the CVS Pharmacy where I meet Liam’s van every day, waiting for my boy to arrive.  I had the sunroof open, windows down, and was enjoying the five minutes of freedom that I get every day.  I noticed a group of boys, probably high school age, with their bikes, hanging out, also enjoying the nice summer day.

In my rearview mirror, I saw Liam’s van pulling in.  As I reached for the door handle, I stopped cold.  I heard one of the boys say, “Applied Behavior Center for AUTISM?  Oh my god!!”  The entire group then burst out laughing.  I know they weren’t specifically laughing at my boy, or the sweet little girly who rides with him, but they may as well have been. 

Inside, I was SEETHING. I proceeded to get out of the truck and head towards where the van had parked.  The boys were immediately silent.  Once I had retrieved my happy, smiling boy, we headed back towards the truck and towards the boys who were obviously staring and trying to get a good glimpse at what was inside the van.  Liam, in his perfectly sweet and innocent voice said, “The boys ride bikes to CVS.”  I smiled and said, “Yes, Liam, those boys rode their bikes to CVS.  Doesn’t that look like fun?”  I turned the edges of my mouth up, forcing a smile in their direction since I KNEW they had seen and heard our perfect exchange.  I’m certain that my smile was less than genuine.  A year ago, Liam would not have been capable of this “conversation”, and I was SO proud.  As I pulled away, I stole one more glance toward the group (who was still looking at us) and one of the boys gave me a sort of sheepish smile.  

I was so angry and hurt that I didn’t even know how to process what had happened.  I wanted so badly to tell those boys exactly what I thought of their laughter.  I wanted to tell them that they are all very lucky to live where they live and to have what they have and that they don’t have struggles like other children do.  I wanted to tell them that my boy is perfect just how he is and I how glad I am that he isn't a mean boy like them.  I wanted to tell them HOW HARD we have worked to get Liam enrolled in that school and on that van.  I wanted them to know all of the crazy twisted emotions that I feel every time I see the van.  (None of which involve laughter.)  I wanted them to be ashamed and to feel what I felt for one single moment.

I didn’t say any of those things.  I felt sort of sorry for them that they had never learned to be kind to others.  These boys will be men in a few short years and will have families of their own and run businesses and enter government roles.  I truly hope that between now and then they learn a few things about how to live among other people.         

I am so thankful that Liam is still oblivious to these sorts of things.  At this point, he can’t really even express the actual emotions that he feels, let alone respond in a way contrary to how he feels.  I don’t know how to go about teaching him how to respond with love and kindness, even when the feelings inside may not match.  I’m still learning this myself. 

I truly dread the day that Liam figures out that people are not always nice, and they won’t always tell him that he’s doing a great job or that they love him.  He spends his days surrounded by people who love him and who are working hard to bring out the best in him, and I wish that would never have to change.  I know it will, though, and I know it will be hard.  Maybe these boys were there today to begin to prepare me for this part of our journey.    


Monday, May 23, 2011

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.

Tuesday, May 17, 2011

It still gets me...

Sometimes when I am behind Liam's van I still get choked up by a crazy combination of emotions. I still can't believe MY boy is in there, even though its been almost eight months. I still feel extremely fortunate that we are able to give him the absolute best possible thing.

Drive carefully red van, you are carrying precious cargo!!


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????



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...  

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.   

Music

(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???

Sunday, March 20, 2011

Intro

My role with our son has expanded from mommy to sherpa. That's how I'm looking at this anyway. It is my job to be his guide and his advocate from here on out (besides all the regular mommy stuff). Together we will attack this journey!

I will begin by posting some of my journal entries that I have written over the past year.  My goal in this blog is to be able to write in the present, not only to keep interested peeps updated, but also as my own version of free therapy. I feel like in order to do any of that effectively, I need to start at the beginning.  I apologize in advance but invite you to stay with me.  I promise that I won't  post as much in the future as I will in the beginning.  :~)