Waiting

I'm sitting here waiting for Liam's van to get here so we can go home.  They are late,  and my mind is wandering.  I've spent what feels like a good portion of the last three years waiting for this van, and it's all over in two and a half weeks.  I can vividly remember being choked up watching the van with "Applied Behavior Center for Autism" painted on the side drive off with Liam. I used to get such crazy mixed up emotions: disbelief that my child could be on that van in the first place,  gratitude that we were able to make it happen for him,  and worry. Always worry. I'm coming full circle now because the van and everything it stands for has become familiar. Comfortable. The gratuitude is still there,  for how far Liam has come. The worry is there too, about the next steps.

That's what life should be about,  though, right? Always taking the next step, even when it's scary.

What should I write?

It’s been a long time. It’s not that I have nothing to write, or that I haven’t thought about it. In fact, if I have a free moment, writing is all I think about, and I’ve started several times. I NEED to write. I have this urge to put things in print so that they become real. It helps me to really flesh out the answers to life’s tricky questions. My problem is this: What should I write? How deep do I go? What will the four people who see this think about my scariest darkest thoughts? The things I’ve wanted to write lately are not the happiest of topics. I’ve been stressed and confused and does anyone really want in on all of that???

I started thinking about why I read the things that I read. Sometimes I read for entertainment, but mostly I’m looking to connect. I want to know that someone else out there has similar struggles, and I want to know what they are doing about it. I want to feel connected and supported. The words I usually get the most out of reading are those that don’t just scratch the surface of something. I want to read the words that dive deep into someone’s thoughts and fears and joys. I want to feel what they are feeling.

So. I made a decision. I will write. It’s mostly for me, but its also for you, if it helps you to know that someone shares your struggles and joys on this journey. If it doesn’t, don’t read it. Please don’t take offense if I write something that you don’t agree with. I don’t write to offend or discourage, but because its for me, I can no longer be concerned about what anyone else will think.

Thank you for your kindness and your grace in allowing me to write freely. 

Eleven

Eleven years ago, I was a young, optimistic twenty year old preparing to marry my best friend.  I knew from the very first day we spent together that I wanted to live this life with him.  We were engaged in a month and married in less than a year.  We like to say that it was probably a crapshoot…but we’re glad we took the risk!!

We loved the time we had as a couple, especially since we hadn’t been together long prior to getting married, and saw each other only on weekends for much of that time. We closed on our house two days before our first anniversary, rescued a couple of dogs, and after four years decided to add to our little family. Planning for a baby with the love of your life might be the most fun a girl can have. We were so excited, planning and dreaming together, talking about names and discussing how we would raise our children, deciding what they might like and do, what we wanted to do the same as and/or differently than our parents had done. It was pure joy sitting together in the heat of the late summer watching our little boy move across my bare belly. 

Looking back on the first half of our marriage, I know that we had it easy. Life was good and we had very few worries. I know we’re lucky; not all couples have that luxury starting out. It allowed us to get to know each other and build a strong foundation. We had no idea how important that would become. Liam, now six, has continued to bring us much joy, but his issues have also been a source of grief, confusion, anger, sadness, regret, guilt, fear, and anxiety. Our plans for life have had to change drastically. 

In our marriage counseling, the pastor told us that my expectations were higher than those of my husband to be. I have never seen that as a source of trouble for us. In fact, I think it helps balance us out because he is able to see things objectively when I am too emotionally involved. On the other hand, sometimes emotion needs to play a role. We bring unique perspectives to each obstacle. The reason that this works instead of causing a rift is because we share a desire to be a team. We know we are better off together. We know there are things that the other is better at, and we let the other person take the lead when we know that is best for the family. There are also times when neither of us knows the answer, or even the direction to travel. It is these time that I know that I am with the exact right person, because we are always able to talk through things and come up with the best plan. Side by side, we keep pushing through, trying to have fun along the way. He told me recently that everyone gets dealt a hand of cards, some good and some bad. It is up to us to decide how to play them. He’s so right. We do the best we can with what we have when it comes to the “bad cards”, and we are thankful for the “good cards”, using them to our full advantage.

There are so many things about him that I respect, appreciate, even NEED that I had never considered in a partner at twenty years old. My love for my hubby is stronger and our friendship is deeper. I believe that happened because over the last eleven years he has proved so many of the vows spoken on that beautiful sunny day to be true. They are no longer merely words spoken by a couple of kids in love; they are unyielding truths that we can depend on.

Eleven. I’m a lucky girl.  :~)

And we're dancing in the minefields
We're sailing in the storm
This is harder than we dreamed
But I believe that's what the promise is for

Andrew Peterson – Dancing in the Minefields

Good Days

We recently returned from our best vacation ever. We rented a house on the Oregon coast. We had no expectations; we just wanted to relax. Neither of us have been to the Pacific Northwest, so we got online and booked a place. We LUCKED OUT. Last year we did a road trip type trip to Yellowstone and back and saw so many amazing and beautiful parts of the country. However, six hotels in eight days wasn’t the best thing for a child who has trouble staying quiet, holding still, or understanding why he would need to be quiet or hold still. So this year, we rented a whole house with a kitchen and a deck and best of all - no shared walls! I read a tip today on an autism website today that said to get a place with a kitchen so you don’t have to eat out at every meal. I think that tip could easily be extrapolated to this: If you are anyone, with kids or without, a house is a great idea for a vacation! However, if you are a family who has a child who may not understand such “social conventions” as not jumping up and down for hours, and using words to communicate instead of yells,   causing anxiety in hotels for his parents, then a house is not only a great idea, but it is a lifesaver.

Liam kept talking about our “new house” and “new car” and wondering what happened to his house and his car. We kept explaining that we were just borrowing these things and would be going back to our old house and car later. I can’t help but wonder if every time we have been on vacation if he thinks we’ve moved. I wonder if that’s why on some trips he seemed so out of sorts. This was the first time he’s been able to communicate those thoughts and questions, giving us the opportunity to dispel his worry and insecurities. 

I won’t bore my handful of readers with every detail of the mountains, the ocean, the wildlife, the beaches, the fresh fish, the local culture. or any of the other things we loved about Oregon, but I will share my favorite Liam moment. We climbed this huge sand dune. It had to be two stories high. Liam ran up it, we huffed and puffed. We got to the top, slid down, and found ourselves on this huge expanse of beach. It was like nothing I’d ever seen before. It went on for miles. Liam started running. He ran and ran and ran some more. I imagine he has never felt so free in his little life.

We had a whole week of good days. Good days for Liam used to be few and far between. A combination of his difficulty and frustration with communicating and our difficulty and frustration trying to understand led to meltdowns on both sides. In general, these days are gradually becoming farther and farther apart. We have learned more about how Liam learns, and he is learning how to communicate. We are working on how to better prepare him for possibly stressful events. He is figuring out how to calm himself down and get himself out of overwhelming situations when he needs to. We’re learning and working hard, and so is he! Even so, we all needed some time off from all of that hard work. We were all ready for a break, and all of us had a great time. It was refreshing and encouraging to see Liam so relaxed and happy.

I’ll leave you with the evidence while I hold my breath…

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. 

Thinking of you today

My heart is aching for a friend. She got scary diagnosis number three today. I imagine even though this time around she knows the next steps, it doesn't make it any easier. She is such a strong, beautiful momma and is perfect for her boys who need her to guide them on their journey.

It brings back so many emotions for me. I refer to that day as "D-day" in the life of our little family. I both wanted to hear that my assumptions were wrong and also that they were right. It was such a strange dichotomy, and I'm sure other spectrum parents can relate.

The internet has been so wonderful for me. Its been my educator, my outlet, and my lifeline to others who really know how I feel - who can not only sympathize, but EMPATHIZE, truely having been in my shoes and blazed a path before me. They also see through the surface and know  how amazing these kiddos are. I am so thankful for all of the friends I've made along the way. These friends make our life seem not so strange. They help me with the hard days and celebrate the little victories along the way. They point me in the right direction and help to direct my perspective and energy toward positive things.

This friend in particular. We've never met, but I hope our paths cross one day. Love to you and your three boys.  They are made in God's image and are perfect in His sight. And in mine. And so are you.