You’ve read the books. Countless books. You’ve talked with friends. You’ve sat in on therapy session after therapy session and have asked a thousand questions that begin with, “What do I do if…?” You’ve raised your child and you have a pretty good handle on what to expect from them during a meltdown or a difficult moment. But day after day, the words and actions of your special needs child challenge every ounce of knowledge in your head. Out of the blue, they do or say something that completely throws you off your game. You were doing so well, and then. . . this. In that moment, you have a lot of decisions to make. For example: your autistic son just said something that sounded extremely rude and was actually quite disrespectful – had it come from the mouth of your older neurotypical child. Your eight year old son is still a human being, still capable of mouthing off like a typical eight year old boy. But is that what really just happened? Suddenly, you’re in the judge’s seat, peering down at a perhaps not-so-innocent face and you have sheer seconds to decide his motive, attitude, any disciplinary action on your part and the repercussions thereof, or positive reinforcement needed in this situation. You speak. You take action. You hope for the best. The child responds with a nuclear meltdown. As you place him kicking and screaming into his room quietly telling him to calm his voice and his body (not that you think he can hear you, but you say it anyway,) you walk back out into the living room, shaking. Your mind is racing. You doubt your judgement and your decision.
You think to yourself, “Maybe I was wrong.”
Okay, so maybe that wasn’t you in the above scenario. But it was me just yesterday evening. However, I have a hunch that this is you, in some form, at some point during your week raising your special needs child.
My son was diagnosed with autism very early on at age 2. He actually began therapy before he was diagnosed because he qualified for early intervention services. Prior to beginning therapy, he had no language. He did not use any words, ever. He was either silent, laughing hysterically, or screaming bloody murder at the top of his lungs – for no apparent reason. We used to have to play the game of 100 questions. Did he want juice? Was he hungry? Was his diaper wet or dirty? Did he get hurt somehow? Are his shoes bothering him? Are the lights too bright? The TV too loud? Did he want a toy he couldn’t reach or couldn’t see because it was in the other room? Where was his blankie? Is he tired? We racked our brains to figure out what in the world was wrong. Sometimes, the screaming stopped almost as quickly as it started. Other times, he would throw himself on the ground, thrashing his body and banging his head repeatedly on the floor. We were so helpless. Utterly helpless. We had no idea what to do because holding him did not help calm him down and only ended up hurting us, sometimes causing us to nearly drop him. He rejected everything we attempted to give him. What were we to do? So we put him in his crib where it was at least soft, and he was yet unable to get out. It was our only option as the safest place we knew to put him. Nothing else worked. After putting him in his crib and making sure his blankie was in there with him (we at least knew that much to do for him,) all we could do was wait it out.
Sobbing, I would wait for his screaming to subside.
Scared to death of what was going on with my son, I would wait for his body to be calm. I listened for his breathing to slow down enough to be able to rescue him back into my arms.
I was the parent. I was MOM. I was supposed to know what to do. It was supposed to be instinct, right? Even if instinct didn’t kick in, surely the books I had read would have something to say, wouldn’t they?
But instinct was absent, and the knowledge was lacking. I had no idea what I was doing. And doubt crept in.
Samuel is now high-functioning. Annual tests still confirm classic autism and autistic symptoms. But he is verbal. He is main-streamed into his third grade class (with an aid and therapists.) He can tell me what he wants. He can ask me questions and hold short conversations. He can tell me he loves me. But he can also talk back. He can speak disrespectfully when I can see he truly does know better than to say what he’s saying. He can be grumpy and can act in a mean way toward us and his brothers. On purpose. However, he can also be confused as to why we are explaining to him that the way he said something was rude. He doesn’t always seem to understand that the tone of a person’s voice can change the meaning of their words. It’s part of what he is working on in therapy, but it is a huge struggle for him right now.
When my decision to withhold dessert from him last night due to repeated offenses with many warnings and continued rebellion resulted in a major meltdown, I questioned myself. Maybe he didn’t realize he was talking in such a hurtful way to everyone in the family. But my husband and I had warned him many times during the course of the evening, repeating his words back to him and explaining why it wasn’t okay to talk like that. We had warned him he would lose a privilege if he continued his behavior. He was angry at the idea of losing a privilege, just like any other kid would be too. But he kept going, and I had to act. I had weighed all the evidence. I considered all the factors. I pondered the implications of removing a privilege. I thought about my role as a Christian parent and that I can’t always chalk wrongful behavior up to autism because we know what he is capable of doing. He has shown us in the past that he is able to listen to us and change his behavior. He just didn’t do that last night. We had to be firm and show that we were serious about imposing consequences.
His meltdown lasted for several minutes, and then all was quiet. He came to find me cleaning the kitchen and handed me a piece of paper that said, “I love you, Mom.” I put the broom down and gathered him into my arms and softly told him, “Thank you, Sam. I love you too.” And then I told him to go get his pajamas on. He quietly asked with tears forming in his eyes if he could now have dessert. Again, I sat in the judge’s seat. Do I grant mercy and allow a bowl of ice cream to make it all better? Do I hold to my decision? Do I give in to what could very well possibly be manipulation of my emotions in order for him to get what he wants? We’ve seen that before too. He’s one smart cookie. He’s not incapable of manipulation. Kids have incredible ways of putting one over on their parents, even those with special needs. They’re still kids after all. Was this what was happening here?
Writing notes after a confrontation has become a normal part of his routine. We never told him to write anything down; he does it all by himself. Sometimes he writes how he is feeling and asks us to stop making him feel bad, but he always includes “I love you.” I view the writing notes as a way for him to process what is happening and as a way to reconcile. There have been times when we knew that autism was greatly affecting his behavior, and when he wrote a note explaining that he was so sorry for hurting us and asking forgiveness, we granted mercy and lessened the consequences in that instance. Perhaps in his mind, that confirmed that writing “I’m sorry/I love you” notes = getting what he wants. And with autism, if something is different than the way he thinks it should be, that’s what leads to meltdowns. He doesn’t understand why it worked last time but it’s not working this time.
Against the emotions of a mother whose heart had just been melted by reading these words marked with hearts, I stood by my decision. I calmly answered his request for dessert by telling him, “Sam, I’m sorry, but my answer is still no.” I explained once again that there are consequences for wrong actions, and his consequence was losing dessert that night. This sent him reeling. There was still 30 minutes before bedtime, but I discerned that it had been a long day, and he was just exhausted and was acting accordingly. So we put him to bed. We did not engage his angry comments as we adjusted his covers. We told him we loved him and hoped he slept well as we gave him and his stuffed Olaf hugs and kisses. We said we loved him once more as we turned out the lights and closed the door on our boy who was now quietly sucking his thumb and feeling his tattered blankie between his fingers.
I collapsed onto the couch next to my husband, sitting and staring. Wondering if I had done the right thing. Tears fell as I recounted in my mind every exchange. Doubt filled my heart. And then I felt Kyle’s strong hand on my shoulder as he gave it a squeeze and said, “You did the right thing, sweetheart.” I shook my head, still unsure.
Have you been there, Mom or Dad? Have you sat in the stillness of the night and questioned your every word and decision of the day? Do you feel the guilt of incompetence? Do you feel the weight of inadequacy? Do you look to the sky and tell God you’re not cut out for this job? Do you freely admit you don’t always know what you’re doing? That you don’t have it all together all the time?
Take encouragement from one doubting parent to another: it’s OKAY. Maybe you made some mistakes today. So did I. Perhaps you wonder if your decisions were mistakes. You’re not alone. We all question ourselves. We all wonder if we just completely ruined our children by that one disciplinary decision. By saying the wrong thing at the wrong time. But you didn’t ruin your child despite what your emotions tell you. When doubt creeps in, or when guilt overwhelms, remember the cross. The blood of Christ covers all. Trust the Lord to protect the heart of your child from your mistakes when you are doing your very best. Look to God for wisdom and patience, knowing His grace is sufficient for you. Trust Him to forgive you when you mess up, and to cast it as far as the east is from the west. He is faithful to forgive and His mercies are new every morning.
“May our Lord Jesus Christ himself and God our Father, who loved us and by his grace gave us eternal encouragement and good hope, encourage your hearts and strengthen you in every good deed and word.” 2 Thessalonians 2:16-17
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