Tantrums

I don’t know who tantrums affect more, Miles or me. It’s been three years of tantrums. Some long lasting, others short lived. Some suck the life out of you some are over so fast you forget they even occurred. Tantrums, more or less, rule our lives. They determine if we have a pleasant meal or a torturous one, if night time is going to be fun with giggles or an hour long ordeal you just want to hide from. I would like to think that I can handle any tantrum- I am as I call myself a well seasoned veteran when it comes to tantrums- but in the past week I have found myself hysterically crying after Miles’ “meltdowns.” This is my attempt to face some of these feelings that arise when we (Miles and I) are at our worst.

Tantrums in our life are a lot like lightning- they strike a lot of times without warning and the damage is either very minimal or extremely disastrous. Everyone sees it and some people stare in wonder; others run and duck for cover. In our house, they are a daily occurrence which always leaves us guessing- what is this next hour going to be like? Once we survive a peaceful hour we are grateful but fearful that it was only a brief moment of calm in our lives. It is a constant balance between pushing Miles to be all he can be without rocking the boat so much we cannot function.

            Let’s take a second to acknowledge that all children have tantrums. I have a typical three year old and she has had several tantrums in her day; some outrageous others fairly typical. However, unless you have lived-daily- through an autism tantrum, it’s impossible for someone to truly understand its dynamics.

            When Miles has a tantrum he screams, arms and legs flailing. He repeatedly says, “hold me hold me” but when you pick him up he kicks, claws, and fights his way out of your arms. At home this is usually manageable by putting him in his room, dark, quiet and covering him with a thick blanket. He usually loves the sensation and will allow you to lay with him and sometimes even sing to him. Silence or songs will be broken by sporadic screams, shouts, or him saying a repetition of oral stims that are not really language. Sometimes he sobs uncontrollably in between silences with tears streaming down his face.

A few weeks ago I felt from eyes that he was saying, “help me, I don’t want to cry but I can’t stop.” Of course he never said this but I have an uncanny ability to read Miles’ wants and needs with nothing more than my intuition- if we can call it that. With this look of helplessness, I took a step back and realized I didn’t really know what to do to help him- and that’s when my crying took over me.

            In public, tantrums fall into a whole other category. Miles’ screams are usually the first thing to grab the attention of the surrounding strangers. Followed by him throwing whatever he was holding in his hands. I can’t say that I see people starring (my focus is usually on Miles, my daughter, and keeping everyone relatively safe and calm) but I can feel them starring. Some people make comments others just use their eyes to place judgment. Some shake their heads at me as if I have disappointed society by allowing my child to behave this way- others move on with their business without a second glance. My focus is always on Miles and I try to remind myself of that- no one else comes home with us so who cares what they think, right? Sounds so simple but if you have ever had to use this strategy over and over- it wears you down. I have grown a lot in the years we have had to face public tantruming; I no longer cry along with Miles, I don’t scream back- my plan is usually a simple one: Say nothing and just lead by action. Carry on with what the plan was, ignore, redirect, but no explaining- not to anyone! This becomes difficult when my typical three year old is in tow (which is more often than not) but I have been blessed with many friends who will take over my role with her while I deal with Miles. If I am alone in public with them then I do what I can to the best of my ability.

            At the end of the day- no matter what the tantrum whether it’s minutes or hours long- I know there will be an end at some point. It takes so much inner strength to swallow it day in and day out but it’s not impossible. There’s always a breaking point in the tantrum when I feel like I can’t go on- like I’m going to lose it and I’m going to breakdown (and that has happened, more times than I would ever care to admit) but during the tantrums that I classify as “productive”, I am able to calmly accept that like many things with autism, this too will pass.

            As Miles’ tantrums evolve, so do my emotions towards each event. In my early autism years (right after diagnosis at age 2) I would cry almost as uncontrollably as Miles as he pushed and screamed and fell to the floor because I wasn’t moving fast enough, I didn’t have what he wanted, or I didn’t know what he wanted. I kept thinking it was always going to be like this- this was my fate as a parent to Miles. As ABA therapy fell into place and real progress was being made, I had a false sense that the tantrums would fade and be a thing of the past. But with new successes, new challenges came and so did the tantrums only now he’s bigger, stronger, and knows how to go straight into a full on meltdown. I think now I cry out of frustration and desperation and fear. Fear that he is regressing, fear that he will never ever completely phase out of tantrums. With every tantrum I worry that we are standing still instead of trudging forward. The biggest fear I have is that Miles’ progress will plateau and become stagnant. Tantrums take my heart to the dark places when I ask myself, ‘what if this is as good as it gets?’

            I know I need to conquer the internal struggle that I have with myself. I’ve got to let go and let God as many would say. Even though I doubt this road, I know that for Miles this is not as good as it gets, the best is yet to come- but you can bet there will be many tantrums along the way.