Last night, I received a message from the county that we were under a tornado watch for the next four hours. A quick glance through the curtains revealed blue skies out front, but darkening clouds out back. Various scenarios scrolled through my mind, like one of those old View Masters that changed pictures with the push of a lever. Possibilities included lots of crying, meltdowns, insisting to look up pictures of tornadoes online and asking thousands of questions about what could happen, a sleepless night, and general perseverating fear over the weather outside. With each scene, I was already preparing for what might happen and planning how to get through it. We autism and special-needs parents are always at least 23 steps ahead, with a plan for each step, and maybe even a couple of alternate plans too. (Although let’s be honest; some of those plans involve hiding in our closets with our secret stash of chocolate.)
Living with a son with autism has looked a lot like the above story lately. I can usually tell when a storm is brewing. The clouds are starting to circulate, a funnel begins to form and threaten the ground, and my mind immediately springs into action. In that moment, I attempt to predict not only what’s going to happen, but what’s causing it, how to handle it, and hope it ends peacefully. But I can’t always prevent the tornado from touching down. I can’t stop the whirlwind that storms through my house, stomping down the hall, slamming his door over and over and over again, or knocking down desk chairs. I can’t control the words that spew from his mouth out of sheer anger and frustration. Telling my son to stop would be like trying to convince the tornado to stop spinning. I just have to find something to hold onto, strap both of us down, and wait for it to blow over.
Studies have shown that moms of children with autism experience chronic stress similar to that of combat soldiers. I’ve never been a combat soldier, but I can certainly see the parallel. We have to stay calm under pressure. Predict the future. Have a plan of attack according to those predictions, and a few plans in our pocket for those surprises we never see coming. Not to mention the actual “fighting” we must do: verbal bullets whiz by our ears, and our child’s body becomes a live grenade, unleashing an ungodly amount of energy fueled by a host of emotions that we must attempt to contain to minimize damage. Some of us even sacrifice our own bodies and dive on the “grenade”, as it were, in a desperate effort to protect our child even if it means we sustain our own injuries. We hold our children’s arms and legs, squeezing as tightly as they will allow (if we’re even allowed to touch them at all) and wait for the fight to subside. It’s like we’re trying to love the meltdown away with our bear hug. It’s all we know to do.
Sam has had trouble eating lately. He feels as if he’s choking on the food when he swallows it, so he spits it out. But then he becomes very angry and aggressive about it. He tries to swallow a couple of times, but when he is unsuccessful, he launches into a meltdown despite my attempts of reminding him how we stay calm, redirecting, and all those good ABA techniques we’re supposed to use. I try to control when the tornado touches down. Once he reaches a certain point though, the funnel has touched down. And it engraves a random, destructive path in the ground. Nothing is immune to possible damage.
During one such episode this week, I was holding Samuel in my lap in his nylon papasan chair, squeezing his arms to his body and resting my cheek against his back. I felt him wailing, his back rising and falling harshly. I heard his cries, “Why is God letting this happen? I’ll never be able to eat pizza again! I don’t — I can’t — oooh!!” My own shoulders began to shake and I felt the tears start to well up. I could have cried. I could have broken down right along with him. But I couldn’t do that. I blinked away the tears, shook it off and told myself I had to be strong.
But I’m no fool.
I’m not strong.
So there I sat, racking my brain for answers. Feeling helpless. Weak. I had no plan. I could only try to soothe him, but it wasn’t working. I stared out his window into our front yard, cool and green, gently warmed by the sun. Such paradise compared to the cold grayness that I felt surrounded us in his room. I, too, cried out to God. Silently, I prayed, “God, I need You. I need help. Please send help. Please send help now. Please… please send help.” I thought of the stories about George Mueller who trusted God for His every provision for sustenance at the orphanage. Stories about how they needed milk in the morning, but there was no milk in the house. But then a stranger would appear with a jug of milk, having been led by the Holy Spirit to bring it to him. I knew God was more than capable of providing help. But I didn’t need milk. I didn’t even know what help I needed. I just needed – wanted – something.
Yet nothing came.
No knock at the door.
No manna from heaven.
And though I already knew the answer, I continued my cry, “God, where ARE You?!”
No sooner had I finished my cry that I felt a whisper encompass my heart, “I am the Lord, the Holy Spirit is with you and will comfort you.” I was reminded of the verse in Isaiah 66:13, “’As a mother comforts her child, so will I comfort you,’ says the Lord.” I recalled 2 Corinthians 12:9, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”
Have you felt alone, crying out to God for help – whatever that help looks like – now? Have you wondered where God is in the midst of such pain and turmoil? Do your plans go out the window and leave you flailing in the tornadic winds with no shelter in which to hide? Are you weak?
He is stronger.
Dear friend, cry out to God. He hears you. He listens to you. He is compassionate toward you. He loves you. Find comfort in the shelter of His wings.
Psalm 3:4, “I cried unto the LORD with my voice, and he heard me out of his holy hill“
Psalm 116:1-2, “I love the Lord, because He hears my voice and my supplications. Because He has inclined His ear to me, therefore I shall call upon Him as long as I live.”
Psalm 118:5-6, “From my distress I called upon the Lord; the Lord answered me and set me in a large place. The Lord is for me; I will not fear.”
Jonah 2:2, “I called out to the LORD, out of my distress, and he answered me; out of the belly of Sheol I cried, and you heard my voice.”
Psalm 18:6, “In my distress I called upon the Lord, and cried to my God for help; He heard my voice out of His temple, and my cry for help before Him came into His ears.”
And my personal favorite, Isaiah 43:1-3, “But now, thus says the Lord, your Creator, O Jacob, and He who formed you, O Israel, do not fear, for I have redeemed you; I have called you by name; you are Mine! When you pass through the waters, I will be with you; and through the rivers, they will not overflow you. When you walk through the fire, you will not be scorched, nor will the flame burn you. For I am the Lord your God, the Holy One of Israel, your Savior.”
When the tornado touches down, throw yourself on the mercy seat of God and call out to Him. He will hear you, and He. Will. Answer.
We are ‘crying out’ in our house this morning because of circumstances with our son. This was exactly what I needed. I will be reading these verses all day. Thank you.
This is a regular occurance in our home. We have 3 on the spectrum, and each one quite capable of the tornado. Sometimes it’s just a microburst, other times it can rank up to a 5. Lately the middle one has problems due to staff not staying–we’ve went through 3 staff in 4 months and it hurts him deeply each time, and then he gets upset and hurts us. Oldest has his tornadoes at school under pressure to perform in the mainstream. Youngest has her issues doing homework and her daily dressing/getting ready routines. I’ve worked in the prison system, EMS, and nursing homes, and none of them were as stressful and chaotic as what I do now staying at home with the kids. Hubby has worked as an RN for 20 years in big cities and psychiatric units, and nothing has been as stressful as the homefront dealing with the autism/MR/bipolar disorders head on. Without the Lord, we’d have given up long ago. He is our strength and a beacon when we feel like we’re floating out to sea. And since we live in Kansas and tornadoes are a real and legitimate threat, we sure can relate to the whole analogy!
Sarah, thank you for this timely post. This morning I was doing a quick errand before meeting a friend for a long-anticipated coffee date. My phone rang; it was my daughter’s high school. (She is 16 with Asperger’s — we also have a 12-yr-old son with disabilities incl. ASD.) She had had a huge emotional outburst — could I come get her and take her home for the rest of the day? I abandoned my shopping, phoned my friend to cancel, then called a cab so that I could get home quicker and then drive to pick my daughter up. It was SO stressful, yet as you said, I had to stay calm — I had to do what needed to be done to support her. The burden of ongoing stress is just unbearable at times, so I find myself often crying out to God for help because we just can’t do it on our own. Thanks for sharing your experience and encouraging the rest of us on this journey.
The timing of this blog is not a coincidence, yet when I read it and know in my heart God hears me, I feel so alone. Our son who is on the spectrum, had one grand mal seizure last May, then none until January 1st and now he has them frequently and we have no idea what has happened? Sadly, he has had two, one week apart, soon after he goes to sleep because he has this horrible fear of storms and while having these, it is raining outside. I am out of options and ideas on how to help him. I am also out of ideas how to help ourselves deal with whether God is hearing us or not.
Yes–all week…crying…crying for me…for my kids… and crying out to God…
I’m SO battle-weary!
Thanks for company in the trenches!
I know. I understand. Keep crying out to God! He IS there!! He is faithful to His promises, and He promises to comfort us when we mourn, to hear us when we pray and cry out to Him, and to grant us His immeasurable grace. Keep fighting dear one, the battle belongs to the Lord and He has overcome.
I’m so sorry to hear about these seizures. That is very scary. Sometimes, we just never know what’s coming around the bend with our special-needs child, yet somehow we have to be prepared for it, whatever it is. There is much anxiety for us as parents, and for our children too – like anxiety over raging storms outside. I have been there. I physically climb on top of my son in his bed, piled with lots of covered and his weighted blanket, trying to provide as much sensory input as possible, and I pray out loud in his ear and I just rest with him, trying to help him take deep breaths and calm down as much as possible. Those make for sleepless nights, which make for long tired days the following day. I also made a keyring of cards with comforting Bible verses on them for Sam to read for himself when he is anxious, or for me to read for him and that has helped a lot as well. I assure you though, God DOES hear you. He IS with you. I pray for you to be able to find answers or something to help soon! Blessings, Cara!
Jeannie, you are definitely NOT ALONE!! I’ve also had many interruptions to my days because my 4th grader son with autism can’t always control himself and has potty accidents at school. I always pack extra clothes for him, but sometimes they get used and I don’t know about it until they call me and tell me he’s out of fresh changes of clothes. Obviously, I can’t let my son sit in stinky pants all day, so I have to drop everything to take him fresh underpants. He is always very upset by these episodes and embarrassed to go back to class because kids might ask him questions. We end up having to have little counseling sessions in the school office for him to be comfortable with going back to class. I hear you! God is the one who grants us the strength we need in the moment when we are just so tired. Keep leaning on Him!
Mrs. Abella, you really can relate, can’t you?! I used to live in Kansas City, and I well remember the tornado sirens and hiding in our tiny crawl space with a newborn (eventually, a young child, a toddler, and a baby!) and waiting for the storm to pass. I know how heartbreaking it is to watch our children be hurt, and even more so when they take it out on us because we are the ones who are there. Your home sounds like it has experienced multiple-vortex tonadoes! Scary and stressful, I’m sure. I am encouraged by your words that the Lord is your strength and beacon – sometimes we need that lighthouse shining for us to keep our eyes fixed on that which is strong and stable and will help us steer the boat home safely. Luckily, our Lord walks on water and calms the sea! Keep trusting Him for your strength friend!
Stephanie, you are more than welcome. God’s Word never returns void. It is true and trustworthy. Praying through Scripture has given me such peace and comfort; I know God will use His Word to continue ministering to your heart. Keep turning to Him. He will never leave you or forsake you. You are NOT ALONE!
So good to know that others feel weary and have not walked away from the faith. I was at the end of my rope this week. I called the crisis hotline I was so exhausted. Thank you for being transparent. God bless you all.
Denie, I know it is so hard. Sometimes we need someone else who can walk us through the hard in the moment. Friends and family don’t always know how to help, but crisis hotlines exist for this very purpose. There is never any shame in calling out for help! I have no desire to be fake and put up a smoke screen and pretend that all is well. It’s not always well. Life is HARD. It hurts. It’s exhausting. But we’re all in this together. You are not alone! God bless you too!
yes, this is where i too live. and these verses mean so much to me, especially Isaiah 41. the one thing i hold onto, that is everything, is as in Zephaniah 3:17 “the Lord your God is with you–He is mighty to save. He takes great delight in you. He quiets you with His love. He rejoices over you with singing.” To know that He sees and takes GREAT delight in me, i run to Him and am quieted with His love and that is how i go on. And that is why the laughter returns. He is truly my respite, my strength and my joy.