A Better Kind of Spring

It’s been so long since I’ve written anything! I hate when I do that, and I think I figured out why it happened this time. I tend to write more when I’m struggling. It’s a means for me to get my own thoughts and feelings straight. I’m not sure why writing works for me, but it does! I want to share my struggles in the hopes that just one person would see it and might realize that they aren’t alone on this scary journey. I’ve gained so much insight and help from reading about other families that I hoped to pass a little of that on.

I guess that means the good news is that we aren’t struggling so much. It just sort of snuck up on me. All of a sudden every thought and action wasn’t tied up in something related to autism or figuring out what the next move is. All of a sudden we’re in a good place, Liam is happy, and we’re content with where things are. All of a sudden I’m back to thinking about taking care of other things and maybe even thinking about taking care of myself.

I think back to where I was this time last year. I was not in a good place. We were in the midst of preparations for the huge transition to public school and saying good-bye to full time ABA therapy. I was terrified. I was sure Liam would end up in a broom closet somewhere with people who didn’t care about him at all, scared to death and regressing into who knows what. I was preparing for the battle of a lifetime with the decision makers and the service providers at this school. I was considering leaving a great company simply because I was positive that Liam couldn’t handle before and after school care – and summer camp? Forget it.

None of my fears came true. Not one. The IEP team offered everything I was prepared to demand and defend. His teacher-to-be asked thoughtful questions about our son. The summer camp allowed Liam to become familiar with the school and the LOUD DRYERS and the playground and the gym and the fire alarms. He also met some kids that are the same kids he’s with before and after school. This group truly looks out for Liam. He started first grade and has definitely had some challenges, stumbling blocks, and meltdowns along the way. Homework is HARD, Friday test days are HARD, sitting still and being quiet are HARD, knowing how to talk to others is HARD. But he’s winning everyone over like he always does with his sweet self and his fascinating mind. Both his teacher and the resource teacher are accessible any time I need or want to chat. Liam just got his second invitation to a birthday party for a classmate. He has a group of girls who mother him and make sure he’s okay. He talks to the custodians and the lunch ladies and the nurse and the ladies in the office. He knows kids who aren’t in his class and what teachers they have. He is talking so much and saying things all the time that just shock us! He has come so far out of his shell that sometimes even I don’t recognize him. Liam LOVES everything about this school.

Liam is in a mainstream first grade class. No one would argue that he has the most aggressive first grade teacher in the building. He actually says that he wants his first graders to be ahead of all of the other first graders in the state. That would have been great for a kid like me, but for Liam it made me nervous. However, his teacher is great at getting to know each student and reach them where they are, and gets creative when he needs to. Liam has an aide in the classroom at all times who helps him to stay focused. He gets speech and OT, encouragement socializing on the playground if he is having trouble, and extra breaks during the day when he needs them. He takes his hardest tests in the resource room so there are fewer distractions. I get a head’s up when there are planned drills or assemblies so I can help prepare Liam. I can come to school whenever I want. Liam is getting good grades. When we got his first report card, he had a C in reading. At our parent-teacher conference, I asked if you can pass with C’s. Apparently C is average and is indeed a passing grade…Ha!!

Today I dropped Liam off at the before school care group, and on my way out, ran into his resource teacher. She said, “Hey Becca! Send me some dates and times that work for you and your husband for Liam’s IEP.” I said “Okay, do I need to call someone to schedule that?” She gave me this blank look and said, “No, I’m taking care of everything. Liam’s mine until he finishes fifth grade.” I know that as parents we have certain rights and can request certain things at certain times…I’m just so glad that this isn’t a constant fight. I’m so relieved that it really feels like we have a team. I’m not naïve enough to believe that we’ll never have to struggle with all of this again. If at any point this becomes not the right thing, then I’ll jump back in and figure out what is. For now, though, I’m going to rest knowing that Liam is in good hands. He’s come so far in the last year…and so have I!

I’ve learned that it doesn’t matter if the people at the school have specific experience and proven success with autism. What matters most is that the people that Liam is with every day care about him enough to get to know him and what makes him tick. That goes for every child, special needs or not. So far, I’ve seen this demonstrated over and over, and I believe that is why it works – not because they have tons of special training, but because they care.  

This is the first spring in several years that I haven’t been buried in one mess or another, and I intend to enjoy it!!        

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! 

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.    

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????

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.”

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.”