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The Storms

January 9, 2014

“It’s not a bad lesson to learn in the bleaker months: how you view a storm is a question of perspective; provided you find the right rock to watch it from, it could be the most incredible thing you’ll ever witness.”
― Dan Stevens

Tonight was hard. Tonight was the kind of night that a few years ago would have sent me to bed sobbing into my pillow. It was the kind of night that a less experienced me would have feared. It was the kind of night that I have now experienced countless times. It was the same. But so very different.

If you’ve been here for a while you may have noticed that my older children have been largely absent from this space. There is a purpose to that. As they have gotten older, I have not felt entirely comfortable sharing all of their stories here, because they simply are not mine to share. But at the same time, as they have gotten older, my parenting strategy has had to shift enormously, particularly over the last few months.

Troy is 9 and a half years old. He successfully discharged from all of his behavioral therapies last June. He has gained so many skills. But suddenly, over the last few months, his anxieties have flared up again. He is impulsive again. His temper flares and his moods change on a dime. He can be giggling and sobbing in the same instant. I feel like we’re back at the beginning in so many ways. Except this time, I can’t call all the shots. I want so much to give him his own voice in deciding his own accommodations. If I call for the cavalry, for the return of the therapists to teach him the coping skills that he needs, I want him to be part of that call. And he’s not ready yet.

But tonight was hard.

Tonight Joyce, misreading his social cues, thought it would be funny to throw a cup of water at him. She thought they were having a sort of pillow fight…. She thought they were playing…. The cold water against his skin was just too much. He lost control. He went into a full blown meltdown. Mary was sleeping. I gave him calm instructions. I tried, the best I knew how. It kept looking like he was regaining control, but then he would lose it again. More than 45 minutes after it started, I was standing in the bathroom with him while he pushed me and punched me with all he had, just trying to get it out. Screaming because the rage just wouldn’t let go. My heart broke for him. He had nothing. The deep breaths, the rubbing of his hands on his legs, the primal screams. Nothing was working. I wanted to cry with him.

So many people see him, and they don’t see how much he struggles every day. They will even say to me how he “just doesn’t look autistic anymore.” Like that’s something I should be thankful for or proud of. In many ways, I think it makes things harder for him. I think it makes us forget how hard he works to navigate our world. And without his faithful aide by his side, he has no interpreter, so while he may look more typical, he is working that much harder. And it comes out eventually.

Like it did tonight.

Like it has so many other nights.

But tonight was different.

Suddenly through his exhausted sobs, he heard Mary cry. His screams and bangs had woken her up,and she was screaming. I calmly told him I was going to have to go to her. I told him she was scared, that she had woken up to angry voices and screaming. That she needed me. And I could see it in him. With everything he had he tried. God, he tried so hard. He tried to pull himself together. He followed me out of the bathroom and into Mary’s room. His little body was shaking. She was screaming. She, herself, was now in a full meltdown. Her body thrashing against me and the bed. Screaming and banging her head. She grabbed onto my arms only to push me away and then pull me down again towards her as she kicked again.

And then it happened.

Troy, still barely in control of himself, crawled into the bed next to his sister. And he held her hand quietly. And he let her go through it. Every few minutes he would get up to scream himself. To punch the bean bag chair. Mary continued to scream, and Troy continued to attempt to collect himself enough to hold her hand for a few minutes at a time. And sitting in the bed next to Mary, all I could do was be there. And watch. In awe. Because a full forty-five minutes later, exhausted, they both managed to find their calm. Together.

I have three autistic children. To a new parent, or someone without any children of their own, that might sound daunting. But if you can shift your point of view, if you can watch the storm through a different lens, it is easy to see what a gift it is to each of them to have autistic siblings. They have the gift of always having other autistics in their lives who get it. They understand each other so much more than a neurotypical could hope to. They intuitively understand how ride out the storm together. How to just be there, without all the extra words getting into the way. And even when it’s hard, there is great beauty in that.


13 Comments leave one →
  1. heidi permalink
    January 9, 2014 11:00 pm

    I don’t know how you do it erin. I have one autistic child and one hoh child and can barely keep my head above water. Kudos to you. You’re my hero.

  2. January 10, 2014 2:12 am

    Tears in my eyes for so many reasons. You wrote about this so levelly and I know it’s hard to stay level in these situations (and I only have one.) Much love to you. You are doing it mama. Very well.

  3. autismschild8 permalink
    January 11, 2014 5:08 pm

    This is a beautiful story. I have a severely autistic son (8yrs) and an older boy who is fine. It is a massive challenge and to not be able to get into their world is so frustrating. I find it wonderful and amazing that through your children’s shared love and understanding, they have been able to generate comfort. What a heartwarming story and I echo the comments above.. how on earth you cope I do not know. And yes… many people say that, but I truly know how hard it is.

    • January 11, 2014 5:12 pm

      Thank you. I always joke, a lot of coffee gets me through the day, but truly it is easier than it may sound. They are all such a gift to each other and to us. Just holding onto the positives at the end of the day can get you through a lot of craziness. 😉 thanks for stopping by!

      • autismschild8 permalink
        January 11, 2014 5:18 pm

        Indeed… sometimes I find that the positives get lost though. We have to go out of our way to find them. I admire your upbeat attitude. 🙂

      • January 11, 2014 9:25 pm

        I know some days it sounds hard. Some days really are just hard. But if you can find the quiet in the middle of the storm, you might just have an easier time finding more of those positive moments, because there are so many. I don’t know your sons, but I know my own children. And at first it was hard to find a rhythm, and really hard to find the quiet. I remember staying home for days on end, afraid to leave the house with them – afraid of all the terrible things that could, and most likely would happen. But eventually we did go out. Eventually we found the right accommodations to make it fun, even. Instead of hiding from everyone, or trying make them appear “normal” we learned to let them be just who they are – toe walking, hand flapping, squealing and all. And oh the gifts we have found.Take the time to seek out the positive moments and hold onto them, and then they will be easier to find. In general, I think you find what you are looking for – if you are fearful, you will find things to fear, but if you are grateful, you will see that there is so much to be thankful for. I look at the whole world through a different lens now, as do many of our friends and family, because of the gifts that autism has brought into our lives. It’s not all rainbows and unicorns (see above post. 😉 ), but there are so many really incredible and beautiful gifts in all of this. And then of course, there’s always chocolate for those tough days. ;). Hugs mama.

        “Keep your face always toward the sunshine – and shadows will fall behind you.”
        ― Walt Whitman

      • autismschild8 permalink
        January 12, 2014 2:18 pm

        Yes… what you have said is absolutely spot on! The little things are what brings the sunshine into our lives and I smiled at the references to the hand flapping etc… oh yes.., it is great to meet someone else with whom I can so relate! We find it hard to go out and about at the moment because he has other issues as well… learning disabilties, complex needs etc.. but we have tried to maintain as much of our lives as we can for our other son, who is not affected. You have to have a thick skin but looking at it the way that you have described above is the only way to get through. And amen to the chocolate… far too much of that consumed in this house! LOL. 😀

  4. January 21, 2014 11:29 pm

    I finished reading and was going to comment, “I don’t know how you do it.” But then I saw that was your very first comment! But, I don’t know how one person can manage 3 special needs children, you are a very strong — VERY STRONG — person with a HUGE ENORMOUS HEART! God bless you and your children.

    • January 21, 2014 11:44 pm

      Aww. Thank you. For the most part, it really is easier than it sounds- they are such wonderful kids. We all have our moments though- especially this time of year.. Just holding on til spring! 😉
      Thanks for stopping by. xoxo

    • January 22, 2014 3:06 am

      I recently changed the name of my blog, (read here: ) but not the web address, since I’m not tech savvy enough to figure that out. 😉 so the URL for the blog’s homepage is :). I didn’t get an email from you… I don’t think I actually have an email listed on the site, though some folks have managed to email me, so it must pop up somewhere. Try filteredlight at hotmail dot com. 🙂

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