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.

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!