My plan is not better

I am a planner. When we go on vacations, I like to have every day planned out. The details make me happy. On this day we will eat this and on that day we will eat that. We will drive x number of miles and we will stop at this cool park I found to let the kids play, etc. All the details.

The irony of this is I haven’t always been a planner. Pre-adulthood, I was as go with the flow as you can get. But then, I grew up and became a control freak figured out I like things to run smoothly. 😉

I am a Christian. And I believe that God uses all things to sanctify me, to mold me more into the image of his Son. I see this clearly in my planning. Before we knew the extent of our son’s special needs, doing any sort of activity required planning. Even though people gave us the, “these helicopter parents need to loosen up” look. We knew that we had a child who knew no sense of danger, requiring 100% supervision. We also knew that if we wanted to avoid an epic meltdown, we needed to work in breaks and be prepared with distractions. Changing me into a planner was a grace of God and a bit of a miracle (just ask my old debate partner …)

Our journey into parenthood didn’t go as planned. Yet, God gave us children and we are so thankful. As I planned through the bumpy journey, I saw things unfolding how I’d dreamed. I grew up in a family of 5. Two boys and a girl. I adore my older brothers. And to this day, they remain a couple of my closest friends. I wanted to replicate those relationships in my own family. Baby number one was a boy, baby number two was a boy. We lost pregnancy number 3. That wasn’t my plan. Baby number three was a girl. And there it was, complete. I had already flown past plan z at that point, but my heart was full and I was grateful for the lessons we’d learned along the way and seeing grace upon grace in each moment.

Less than a year later, we fell into the cliché category of having a surprise baby. I can tell you that we didn’t think it was physically possible for us to conceive without the aid of massive fertility medications and surgeries. We had ten years of proof. I can tell you that it was so far off of our radar that we missed the first trimester. I can tell you that I gave away every ounce of baby stuff I had the moment baby number 3 grew out of it. But that isn’t what I want to tell you.

Baby number four was not in our plan. She was in God’s plan. And God’s plan is always better than mine. That’s what I wanted to tell you.

Baby number 4’s birthday is around the corner. It’s a great time for me to pause and reflect and even laugh at my feeble attempts to control plan things. It serves as a great reminder that in all things, all glory be to Christ.

It is easy to give glory to God for new life, for sweet precious, tiny babies. But what about when that baby gets older. What about when they are on sensory overload and melting down in the middle of Target? What about when that baby is now sassy and sin is evident when they speak? What about when that baby grows up, has babies of their own and attempts to plan better than God?

Hopefully in each of those moments, we I can recognize that there is great joy in God’s sovereignty. When our plans fail over and over, may we look to Christ and may we rest in knowing that though things don’t look how we imagined, they may be far better than we ever thought possible. In the bible, in the book of Joshua, the LORD told Joshua to take twelve stones to lay in the midst of the Jordan to serve as a reminder. When people from generations to come, ask what the stone memorial represents, they are to tell of God’s faithfulness. God allowed the Israelites to pass safely through the Jordan river. That is mind blowing and absolutely needs to be communicated to all generations.

I’m not an Israelite. But I am a child of God. And God continues his faithfulness. I don’t have a stone memorial to serve as a continuous reminder and thankfully I have the word of God. But I do have a surprise baby. Not my plan, but God’s. Her name is the Greek word for Joy. A reminder to us, to her, and to everyone that there is great joy in the sovereignty of God.

Success

We have an amazing principal at my son’s school. This guy truly believes that every student can be successful. He is probably one of the most optimistic people I’ve met. We appreciate him. School is a complicated thing for our son with autism. It can be the definition of a perfect storm. Or given the right accommodations, it can be … tolerable.

When you have a child with special needs in a school setting, you are thrown into a confusing land of IEP’s and IEP meetings. I belong to a private local facebook group of moms with children of autism. There are countless meme’s regarding IEPs and IEP meetings. These things, these Individual Education Plans (IEP’s) are an incredible thing. Without making changes to my son’s environment, he doesn’t stand a chance for success.

School meetings begin with everyone in the room (school administration, special education teachers, general education teachers, parents, advocates, therapist, etc.) going around and saying positive things. What is going well? Where have we saw growth? I understand the purpose of starting the meeting like that. Start positive so the negative doesn’t seem quite so overwhelming.

However, sometimes this is tricky. And in my experience, it’s getting trickier the older my son gets. But why? I have theories. I always have theories. Here is one.

Success just looks different. When each of my children started walking, they’d take a couple steps, stumble, waver in balance and we’d clap and cheer the entire time. This was something to celebrate. A milestone. When our babies were early walkers and would fall learning how to walk on different surfaces or with different shoes, we were never discouraged by their progress. We didn’t expect more. And the world around them didn’t expect more.

At age 13, the world has expectations. And the majority of the population meets those expectations. My son’s peers meet them. The infamous teen years that come with anxiety for parents. The knowledge that your child might be entering a rebellious state. The fear that they might be just as rebellious as you were. Or worse. I can have these conversations with the majority of the parents, because I have three neuro-typical children. I get it. They are going to be hard and I will have many sleepless nights with them.

But as my friend’s daughter, just months older than my son, gets her learners permit and eagerly picks out accessories for her new car, my son is playing with his stuffed animals. Each stuffed animal has a name and a back story. As kids in our middle school venture into dating, my son continues to live in his world of Pokémon evolutions. His peers for years have had access to technology freedoms, a world that he’s just beginning to navigate with his parents monitoring every.single.move.

Success is just different.

My son recently went to the Washington State science fair. This is success for him. The school didn’t just take the top three, top ten or top 50. They took everyone who wanted to go. My son wanted to go. That is success. Having a desire to do something semi-academic is cause for celebration. Willingly giving up his beloved Saturday of low expectations at home is success. Being willing to go on a ferry, something he is terrified of, is success. Being with his peers, being in a crowded space, being surrounded by noise … all success.

Now here’s an insight into the life of an autism family. Success always comes at great cost. Our son had a successful, long day. And we were all so proud. The next day was going to be rough. Everyone knew it. Everyone anticipated it and everyone braced for it.

I’m extremely thankful for people like my son’s principal. I can’t begin to articulate how meaningful it is to us as parents when people invest in our son’s life. How grateful we are when people are kind and patient.

So, in our next meeting, when we go over success that my son has had, we will include the science fair. We won’t include the following day. We’ll keep moving forward. We’ll continue to praise God for our son. We will continue to measure success differently. And we will continue to hope in Christ, not milestones.

Number 2

When our kids were little-r we used to speak in code, and it was easy. We have four kids and each child received a number. That code has changed and adapted as they’ve gotten older. Sometimes, I’m so good at speaking in code that my husband literally has no idea what I’m talking about. But as adults, our time to visit without children present is minimal. So, we have to be creative, or at least that’s what I tell my husband when he gives me his, “What are you talking about?” look.

Our number 2 is an incredible kid. He’s smart, sarcastic, hilarious and a stuffer of emotions. I remember being in the hospital in South Dakota and my parents bringing our oldest son to meet his new baby brother. It’s a sweet moment that forever lives in every mother’s heart.

At birth, number two became part of an autism family. Starting at age 1, I would drag him to IEP meetings for his brother while he quietly munched snacks, patiently waiting for our focus to turn to him. Number two had a significant amount of respiratory issues his first couple years of life. Lining up childcare for our oldest son, while number 2 was hospitalized was always difficult. Trying not to tax family members too much and trying to train friends around you on how to care for your atypical child was always a balance.

Every person with autism has sensory struggles. Seeking and avoiding. For our son with autism, smell has always been a big deal. He loves to smell anything familiar and doesn’t like any sort of change in smell. His favorite thing to smell for YEARS was his brother. Whenever he would get stressed out, a few moments with his nose to his brother’s hand was all he needed to help regulate him. For the most part, this was ‘normal’ in our home. I’ve found that I often forget things that are normal in our home are actually not. This is pointed out when people visit. I remember family members, all well-meaning, asking why he smells things and why his brothers hand? And when will this stop? I didn’t know how to answer those questions because I didn’t know why our son did those things.

As number 2 got older, he recognized his brother’s atypical need to smell his hand. For the most part, he was accommodating. Though, sometimes he would negotiate something for himself. I let you smell my hand, you let me play with a certain toy. Often number two would be woke up in the middle of the night because his brother had a nightmare and needed to smell his hand or he couldn’t fall asleep unless he was smelling it. Yes. We did end up having to phase out the hand smelling.

Having a brother with autism may be number 2’s normal. But that doesn’t come without frustrations or without the realization that life is hard. Maybe harder for him than some of his peers.

A couple weeks ago our oldest son had a meltdown. Meltdowns have a spectrum to them, too. Some are worse than others. Sometimes when our son has a meltdown, the entire day for everyone in our home is ruined. It happens and it’s just life. This particular meltdown was rough. My husband was at a meeting, which isn’t uncommon. I had already tucked the girls in and they were, thankfully, fast asleep. Number 2 could hear and was unfortunately able to see much of this meltdown. It lasted hours, ending just after 11pm. That’s a late bedtime for a 5^th grader without piling on the emotional toll it takes to hear and see his brother’s continual struggle.

The next morning is school. I feel beat up because meltdowns are emotionally and often physically draining for parents of children with autism. But I also feel sad. Sad for my 11-year-old, who got up with far less sleep than he needed. Sad for the kid who has to and has learned how to muscle through his day regardless of what the night before looked like. I wonder if it’s worth a quick email to his teacher, but in the end, decide to let him handle his day like the mature 11-year-old he is.

Number 2 has played youth football the last three years. It’s been great for him to get out of his comfort zone and meet new people. For a few months, almost every Saturday, our family loads into our minivan and goes to a game in support of our 2^nd son. This is no small undertaking. Really, this is a big task for any family of 6, I assume. We make sure we have snacks, we make sure there are electronic devices charged. We look for the ear muffs that will cancel the most noise. All for one beloved member of our family.

We’ve gotten pretty good at managing our schedule and manipulating our environments to accommodate as best we can for our son. Some may call this enabling, we call it trying to survive, one day at a time. But nothing can prepare him for a bullhorn at a youth football game. Ironically, the same football game that our son ran the ball for the first time. A bittersweet day, an unexpected bullhorn followed by a forever memory for number 2.

We try to celebrate accomplishments for number 2. We try to praise him and reward him. And we still have to discipline him because he’s still far from perfect. He has to wrestle with why he is disciplined for behavior that his older autistic brother isn’t disciplined for. We have to teach him Romans 8:32, He who did not spare his own Son, but gave him up for us all, how will he not also with him graciously give us all things?  We have to teach him that all things includes hard things. We have to teach him that his brother is fearfully and wonderfully made and created in the image of God. We have to teach him that the parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. We have to teach him that he is to love his brother as what is laid out so poetically as 1^st Corinthians 13.

All this to say, when you see a kid sluggish at school, or maybe you see a kid who isn’t giving 100% at practice. Maybe be slow to jump to conclusions. Or when you know a kid who has a sibling with a disability, extend an extra measure of kindness to them. Be gracious. They may still be waiting for the focus to turn to them …

April

Happy Autism Awareness month everyone!

It’s strange what a mixed bag of emotions this month brings for me. Last year, I decided it was time to rip the band aid off and intentionally be more transparent about what autism looks like in our house. I think it was beneficial, if for no one else, it was beneficial for me to let every bystander know, that we already know that we can present as a hot mess. Or we can present as put together, though that is clearly not accurate and obviously way less common. 😉

This April has been an odd one for me. It’s tough to explain. We have been busy. We are a family of 6, have a couple kids in sports and are very active in our church. But it’s abnormally busy-er.

But my desire in starting a blog, was to continue transparency and show how autism impacts all areas of life for each member of our family. I didn’t forget. And I didn’t forget what a great opportunity this month is to do that very thing. It’s just taken me a week to get going. I’ve fired up the coffee pot and plan to share some more glimpses into my chaotic, blessed beyond measure, daily life.

Is there anything specifically you’d like to see? Marriage, travel, siblings, school, etc?

Let’s touch base tomorrow.