Monthly Archives: November 2018

A Thanksgiving Story: Chutes and Ladders

One of my favorite times with my son Micah these days is our afternoon time when Hannah is napping and Sophie is still at school. It’s our special time of day where we get to be together just the two of us. As the middle child, he really needs that time. Sometimes we bake together. He loves to help. And sometimes we’ll play cars, or blocks, or hide and seek. But most often Micah will ask me to play a game. He’s just getting to the age where he understands games well, and I think he perceives that I enjoy games, too.

Recently, I decided he was ready for Chutes and Ladders. It’s a bit more complex than Candy Land or Memory, but he picked it up quickly. He also quickly picked up how to cheat. If he could see a ladder ahead, he would jump two squares while only counting one number so that he could get ahead. Or, he’d count a square twice if he realized he was going to end up going down a chute. The only problem is that all his attempts to control the game didn’t always lead to him succeeding overall, or even in the very next turn. He’d try to manipulate one turn to avoid a chute or gain a ladder, only to end up at another chute on the next turn, because of the square he jumped on the previous turn. Micah quickly became so focused on controlling the game — avoiding the chutes and finding the ladders in the game — that he ceased to enjoy the play. We stopped in the middle of one of our games to talk about this. I explained how his attempts to control his game weren’t really helping, and they were just causing him to not enjoy playing. When he quit worrying about controlling his every move on the board, he was able to return to enjoying it, even if he did have to go down a few chutes. He learned that those few chutes didn’t determine the outcome of the game, nor how much he enjoyed the game.

Isn’t that just like life? Maybe it’s just me. I know that I have spent large amounts of time trying to control each detail of my life to work out “just right,” or worrying about each detail that feels out of control. But then the next turn, despite my careful efforts to control it all, I just ended up going down that darn chute. We can waste a lot of energy and thought worrying about things we can’t control anyways so much that we don’t enjoy life. Those things don’t control the outcome for us either. But we are quick to lose sight of that. In the face of a job loss, a diagnosis, an addiction, an illness, a death, we can sometimes lose sight of the fact that it will all be ok in the end. I’m not saying that we must enjoy always the chutes of life. There are moments of deep grief and pain that must be endured. But we can’t allow those to rob us of our foresight of the outcome, or of our joy at playing the game either.

Sophie’s autism diagnosis has been hard for me. Really hard. But I’m learning that I can’t let that steal my joy. There’s still a whole lot to enjoy about this game, even though it looks different than I anticipated. This week in response to my pastor’s message on giving thanks, I recounted the different things I had to be thankful for specifically because of autism, that I would never have been blessed by without this diagnosis.

There are people I have gotten to know who I would never have known. Many of them. And I am so thankful for each one. Multiple speech therapists whom I will always tear up when I think of, because they literally gave my child her voice. Patient, kind and gracious educational aides who have helped Sophie with tasks that no one but her mother should have to do. Teachers who have loved my little girl like their own, who have rejoiced at each hurdle she overcame. Little friends who taught this grown up about true friendship. I tried to imagine what my life would be like if I didn’t know these people or hold these memories of them. It felt barren. These people have brought a richness to my life that I would otherwise not know.

And there are also so many lessons I have learned, ways that my faith has grown, because of this diagnosis. I have learned to live in today, and not the future. I have learned to trust in a deeper way. I have overcome fears. I have developed faith-filled friendships, some where I have walked before another mama going through this, and some where I have walked behind another wiser mama. I have learned to lighten up, and learned to be more patient. So while I may continue to rage at the brokenness of our world, I find that I can also be thankful to my God who is always “working all things for the good of those who love him who are called according to his purpose.” Even for autism.

Whatever your chute is, can you trust Him enough to say thank you and trust anyways? Can you grab ahold of your blessings and your joy in spite of the bitterness of the slide? Thankfulness is a choice. It is an exercise in faith. It is a very good place to begin if you’ve lost your joy of the game for the chutes you’ve tried to control but had to slide anyways.

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Sophie’s Story: Diagnosis Six Months In

Six months ago today Sophie was diagnosed by her school psychologist with Autism. After six months, there is still a part of my heart that breaks to write that sentence. There is still a part of my heart that denies its truth. I wonder if there will always be. I don’t know. I do know that there will for certain always be a part of my heart that rages against what’s broken in our world. Sophie is a beautiful creation of God, but she, like allllll the rest of us, is not free from the reaches of sin and brokenness. I rage against cancer. I rage against drug addiction. I rage against so many wrong things that we accept as our identities in this broken world. So maybe there will always be a part of me that rages against autism. But what I have realized over the past six months is that none of that is a reflection of my acceptance of my Sophie girl, just as she is. I used to feel guilty for being angry about her diagnosis, as if that anger was some rejection of her. But it’s not. We’re allowed to be angered by the things that are wrong in our world. Time has allowed me to see that each of my children has a “brokenness diagnosis,” though they all look different. There’s no reason to single out autism as some sort of worst case scenario in the “brokenness spectrum,” if you will.

Six months ago I sat in a meeting room at her preschool. And I listened as item after item on her screeners pointed to autism. They were like giant boulders, crushing my heart, weighing me down in utter heaviness. There’s really no other way to describe it. Such heaviness. In those first weeks of raw grief, compounded by the loss of our dear Granny, I mostly functioned in disbelief and doubt. Disbelief of the diagnosis, and doubt of the future. There have been many valleys in the last six months. Many frustrations. I’m not proud of the moments I lost sight of the big picture, of the moments I lost sight of the good, and the moments I didn’t cling tightly to the truth of God’s promises. And definitely a few moments where I completely lost my chill. But as we’ve approached this six month mark, I’ve taken the time to reflect. If you don’t reflect often, I encourage you to make it a practice in your life. Looking back for markers of God’s faithfulness in your life is a powerful faith builder.

Six months ago I had so many apprehensions about how Sophie was going to do in kindergarten. I knew that academically she was ready, but I had some wild notions about how her ADHD might interfere with her academics. (Will she ever learn to read?!?!) And I had concerns about her sensory issues, her anxiety, her muscle tone’s never-ending implications with everything from handwriting to bathroom needs. I had concerns about her transitioning to a new team of therapists and aides, to a new school with “big kids” around. Reflecting back on these last six months has served as a important reminder that God is both worthy of our trust and worthy of our praise.

While our summer just post diagnosis did indeed threaten my sanity at many moments, my time spent with other moms helped me to realize that this is a totally normal mental state for us in this stage of life with little ones. We’re all on the crazy bus together. Moms, if you’re starting to feel like you’re alone on the crazy bus, call another mom and talk for five minutes. That’s all it will take for you to know you’re not alone. Better yet, spend time with her and her kids. Then you’ll see firsthand that your kids are just a normal kind of crazy, even if they are “on the spectrum.”

And now, to the point of my update. How is kindergarten? So good. Sophie is rocking kindergarten. My Jesus took the time to put both adults and children around her who would love her and support her. As was the case in preschool, Sophie is loved by her classmates. Her teacher commented that she has an “unusually kind” group of kiddos this year. That makes me smile. I think she has an unusually kind teacher as well. She is a great match for Sophie. Sophie is very friendly with her peers and is accepted fully by them. She’s adjusted to the routines and rhythms of school. And she finally knows which days she has library, or art, or music class. While she’s had to overcome some anxieties at drop off and pick up times due to the noise and commotion, she has boldly soldiered on, even when she’s anxious. God love those noise canceling headphones!

This October I had the opportunity of leading a group of kindergartners through the Halloween party that the four kindergarten teachers had put together, which consisted of six different centers that 90 children worked their way through. I had a group of 12 kindergartners. What an experience! Some of them were your classic over-achievers, coloring all inside the lines and whatnot. And some of them were just as scattered as my sweet girl. I had to help them gather up their items, hold the discarded pieces of their costumes, and encourage them to rush to the bathroom when it looked like they might not make it on time. In sum, it was eye-opening to see the variety of stages of development that all kindergartners are in. Since there’s only one kindergartner in my house, this was a new view for me. Perspective is so helpful for the special needs mom. Yes, my kid has issues. EVERY KID HAS ISSUES. And every kid has always had issues. And WE ALL TURNED OUT FINE. It’s going to be just fine. Calm down, Mamas.

And, as for her academics, Sophie has grown in leaps and bounds. She is indeed reading! My little book worm, nerdy, book-loving heart is doing flips! I LOVE reading with my Sophie-girl. When we got our list of sight words in August, I had some questions about how that whole thing was going to go. But it has gone great. Sophie mastered her first list of sight words and earned herself an M on the report card. (Kindergartners get L for limited, P for progressing, and M for mastered to help parents see where their strengths and weaknesses are.) Her handwriting is coming along, though this is an area where she will have to continue working hard.

What am I learning as I move through these first six months? What has my reflection shown me?

Keep trusting. God has been good, and he will be good.

Be ok with today. Even as I write this and recount all her great progress is kindergarten, my mind flits to first grade. But will she be ok in first grade? Doesn’t matter. We’re not there yet. And when we get there, his grace will be enough.

Don’t be isolated. Crazy mom syndrome just gets worse when you’re alone for too long. I feel like this is true in spades for special needs moms. Us Mamas need each other. I am thankful for my mom friends. Phew. Jenny Jessie Jacqui Lindsey Chelsi Marie Lara Hil Carmen Lauren Lisa Stephanie Amanda Naomi Kristine I’m lookin at you girl. If you’re out there thinking, Man I need a mom friend, hit me up. I will be your mom friend.

I’m relieved and glad to feel like I am starting to finally regain equilibrium. Not every day is a good day, but I think every mom who has to get three little children out the door by 8:30am will tell you that not every day is a good day, autism or no autism. The truth of the matter is that Jesus is in each day, if you look. His goodness and grace are alongside even the difficult moments. But you have to look. It’s easy to see the yuck of the day. But the search for Jesus is rewarding and life-giving. It’s worth the look, even if you have to look back to find it.

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