Our Special Kind of Life

I've been focusing on the negative a lot lately.

I think about all my plans that I had for my life that didn’t happen, aren’t going to happen, or can’t happen.

I harbor resentment towards people who take their perfectly developing children for granted. I hate that the simple things for everyone else are SO HARD for us. I am jealous of friends having babies willy-nilly with no concern for what could go wrong. Ok, maybe not willy-nilly exactly, but sometimes it feels that way!

I wish that I wasn’t working on year five of potty training. I’ve had enough of that shit (literally) to have potty trained at least two, if not three children. Potty training the puppy last spring was a breeze!

And oh….the screaming and the whining….

On top of it all, I’m ready for sunshine. On a beach. With a drink in my hand and my hubby by my side.

Today I am choosing to look at the positive side of things. We have a special kind of life that I don’t want to take for granted. We have joys that not everyone else has!

Long rides in the car are a favorite way to spend a day. The highway! The cars and trucks! The signs! The ramps! The windmills! Train tracks!! We appreciate the details in life. The way the wheel spins on the toy car! The patterns in the wood on the floor! The soft soft blanket! All weather and surroundings are exciting. The snow! The rain! The wind! The hot! The cold! The dirt! The water! The grass! The sun! The moon! The stars! It’s day! It’s night!

We cherish smiles. Looking back, it seems like we didn’t get very many. Now I try to remember each one because I know that they could still be locked inside him somewhere. We get to truly marvel in a child’s development. Had things gone according to plan, Liam would have zipped through all of the milestones and probably had a younger sibling to contend with for attention. Instead, we've been able to focus on one thing at a time, and really see and appreciate each step. We celebrate each victory whether its zipping a coat or reading a word. Liam works hard for each one and each one is worth celebrating! Speaking of celebrating, we get to jump up and down and flap our hands when something is exciting!

We laugh at ourselves when we wish Liam would stop talking for a minute. We laugh because there was a time we heard other parents tell their kids to be quiet, and we were begging Liam to talk, struggling to communicate with limited sign language and some mind-reading. We are more patient people. We see the world a bit differently. We assume there is a reason for everything and try to find it. We recognize that each and every person we meet may be struggling with something that is not visible to the casual observer. Maybe that guy who was rude at the store was struggling to even have been functioning in public at all.

Liam doesn't lie. He can't. He just doesn't get it, and that is one thing I will NOT try to change!

I feel better now.

Liam is a happy, funny kid who is FULL of life and just happens to be on the spectrum. He doesn’t think there is anything wrong or wonder why this happened to him. I don’t ever want to be the reason that his attitude toward this life changes.

He may have a tough road ahead, but so far he’s tackled every challenge and moved on for more.

Turns out we are the lucky ones after all.

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!

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 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.”

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.   

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.”