Musings of a Marfan Mom



The Menininho has been having a lot of difficulty over the past week. He’s been in a different time zone, away from therapies, away from Mark and me much of the time while we were house hunting, around probably 40 extended family members, and now that we’re back at home one of my best friends from college (“Aunty K”) is visiting. Like most people with autism, M doesn’t handle changes in routine well.

I’ll admit, I’ve been frustrated with him and with autism. After 5 hours straight of him asking about bathrooms literally once every 60-90 seconds, you might be a little batty too. We’ve witnessed the recurrence of some nasty meltdowns, the likes of which we haven’t seen since the spring. He’s also taken to smacking K every time he sees her.

Tonight though, I was reminded of how hard autism can be on M too. We’d spent the afternoon at the monarch butterfly reserve and he’d fallen asleep in the car on the way home. Waking him up to go in the house can be tricky, but tonight it was particularly traumatic for him and sparked a meltdown that lasted a good 30 minutes. M screamed and cried and threw himself around. He begged me not to go, but swatted at me when I stayed. At one point Mark asked “what do you want?”, to which he piteously sobbed “I want cry!”

My heart broke and I pushed back my own tears. My poor baby was in distress and knew only that he wanted to cry, but couldn’t communicate more than that. How frightening that must be for him, all these changes and feeling stressed but perhaps not knowing why, or at least not being able to tell us. And of course, as a mother, my first instinct is to want to hold my son and kiss him and tell him it’s going to be ok, but being touched is the last thing he wants in the throes of a meltdown.

Eventually the Menininho calmed down enough to remind me that I’d promised to make a “happy cake” (birthday cake) for Baby J, so we worked on making cupcakes together and the rest of the night went ok, but I’ll never be able to forget those feelings of helplessness as he proclaimed “I want cry.”

Autism, you suck.

boy at the boardwalk

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  1. ((Big hugs)) to you and to M.


  2. Many days I’m grateful for the trials I’ve been dealt. Most days, they just suck. :) I’m glad you keep it real here on your blog. As someone else who deals with a life-long, never-gives-you-a-stinking-break condition, it’s nice to be able to come here and see that I’m not the only one who just wants to cry sometimes. :) Many hugs and much love to you guys and to little M. And Happy Birthday Baby J!


  3. Yes, Hugs all around for all of you. Sending my love and strength, especially on these difficult days. But I have a question about the hugging and being held, sometimes hugging and tight compression is just what the autistic person needs to calm down. Obviously, everyone’s different, but is this a different type of anxiety that is calmed by compression?


  4. Rita,

    From personal experience, there are times when the anxiety caused by sensory overstimulation, confusion, and similar issues can be rectified, or at least reduced, by tight squeezes and compression. (When I was little, I used to put couch cushions or mattresses on top of me and have my brothers sit on them.)

    Actual emotional distress should not be discounted, however, and can often be very difficult for the individual to handle due to the difficulties in communication and even the problems that others have in trying to empathize with the autistic individual. Many times, the individual is struggling to find his or her “center”–their own emotional control–and every person who holds them, touches them, or even speaks to them or sits next to them is exerting a subtle control on the individual’s emotional state that is resisted.

    Comfort is not to be discounted, of course — those on the spectrum are of course not devoid of emotion, but neither do they feel in a foreign language of emotion. What we more likely need is that time to pull ourselves together without being influenced in so many ways outside of our control, and then to have someone there who we can turn to, for otherwise we end up alone.


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