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!!        

The Kindergarten Dilemma

I have been dreading this. Kindergarten terrifies me.

We worked so hard to get Liam where he is today. It took lots of diligence and patience and busting through red tape to get him the very best possible treatment. We LOVE his ABA therapy center and feel really blessed that it has all worked out, and even better, that it is working!! I would love to leave him there forever. Unfortunately, it doesn’t count as school. In order for Liam to have a shot at graduating from high school, he must start school  by age seven. He’s six, which means this coming fall, he has to do something that counts as kindergarten, or he can’t graduate. I’m certainly not willing to take away that option at age six. Sorry.

We have major problems with starting school. First and foremost, Liam’s social skills are nearly non-existent. His receptive language skills are barely there. This makes putting him in a class with a bunch of other kids and one teacher a very difficult situation for him without help. Convincing the school that his therapist should attend with him might prove to be difficult, and getting them to pay for a full time aid is likely impossible. Our little district just doesn’t have the knowledge or resources, but Liam is not “bad” enough (according to the school) to qualify for placement outside the district in a school with better programs and resources. Secondly is the logistics of the situation. We both work at least half an hour from where we live and from the school Liam would attend.  Even “full day” kindergarten is not a full day. There is a before and after school program, but I think Liam would crash and burn being thrown into a free for all like that, especially if he were expected to do well in class later. It all just sounded like a terrifying nightmare.

We heard about an online charter school. At first I was extremely excited about this possibility because Liam could remain at the center, do his schoolwork online with his therapists, continue receiving daily ABA therapy, and still get credit for kindergarten. However, the more I thought about it and discussed it with the people who work with Liam, I began to see that this was only the best option for me…not for him. In order for Liam to gain real ground in the social aspects of life, he will need to be around typical kids, where things aren’t quite as scripted as they are in his therapy sessions. That won’t happen with an online school. The goal, of course, is to get Liam ready for a real classroom, with a real teacher, and real classmates who he really interacts with. These are mountains for Liam. Luckily our family loves the mountains.

A friend suggested a private school near the center where her son is currently attending.  We decided to look into it. This kindergarten program is part of a children’s ministry at a local mega-church. I met with the director and fell in love. They have a beautiful facility and a fantastic program that is based on developing relationships and hands on learning. It has a somewhat Montessori approach, which I loved. The best part? No IEP needed. They are completely willing to work with Liam’s therapists and program coordinator, allowing them to be involved in Liam’s curriculum planning and behavior intervention, etc. We signed him up the first day registration was open to the public.

So its settled, for one more year anyway. Liam will continue to ride the van to the center, his therapist will take him to kindergarten and stay there with him. Then she’ll take him back to the center for the afternoon and he can continue with his ABA therapy, and they can fill in some gaps that may need to be addressed before school the next day. Once again we believe we are putting Liam in the best possible situation for him.

I guess we have successfully kicked the terrifying public-school-sink-or-swim can down the road for at least another year. 

Phew. 

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! 

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 décor – 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. 

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.    

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.  

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...