The Saddest Violin in the Orchestra

I have to know, for those that have been dealing with a special needs child longer than me, does the grief ever go away? Or does it follow in some form or another as life’s milestones continue to pass by differently than you expected [before diagnosis]?

This week has been excruciating. I have no idea why, but Emma’s behavior has suddenly spiraled down into the pits of despair.  The last four days have been filled with anger and tears beyond belief.  She’s having these horrible meltdowns that turn into absolute insanity as she hits herself, slaps her face, pulls her hair, and bangs her head while screaming like she’s on fire.  They last for a looooong time, and happen multiple times a day.  That makes the horrible angry screaming fits seem like good behavior, and the times like now [happily watching sesame street as she plays with a straw] seem positively ANGELIC.

The last 20 minutes of the ride home today were filled with that.  She wanted the Elmo movie on.  I HAD it on.  She melted down, and under the screams I just had to listen to the sound of her slapping herself in the face and banging her head back on the car seat.  ???  I tell you what, it’s torture.  The last month has been mother abuse, but she’s only 2, and I wouldn’t press charges anyway.  But damn. I’m reaching a point where I feel like I’m stuck living in a nightmare.

The doctor on Monday said she probably has vocal cord damage [scar tissue?  Polyps or something] from screaming and yelling/crying so much, so loud, for so long.  Talk about breaking my heart. While we were there, we heard other kids throwing horrible fits in the other examination rooms; they sounded just like Emma.  Except, they were 8 or 9 or 10 years old.  It was overly sobering.  I try to be positive and think that things will improve for us – maybe these things are all just a phase.  But to be completely honest, the future is so vastly unknown that it’s absolutely terrifying.

The doctor also told us to try melatonin before bedtime.  I guess that it has extraordinarily positive effects on children with an ASD.  We bought some on our way home from Denver.  I was SOOOO excited to try it!  Last night was her first night, and it didn’t work.  She still woke up twice. I know that may not seem like a big deal – but I was disappointed anyway. I’m very ready to begin sleeping through the night.

Today Emma even threw her fits during therapy, which has never happened before.  She loves J & J so much that sessions are usually great, despite how bad of a day she’s having.

I’m also broke, heading into finals week, and had my last painting class today – none of which help with my feelings of discouragement.

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7 thoughts on “The Saddest Violin in the Orchestra”

  1. Hello, I’m sorry you are feeling so down. I can’t say how things will turn out for you and your daughter in the future all children are unique individuals they grow and learn at their own pace.
    I just want to say though that your little girl’s meltdown are very similar to how I was as a child. She is learning to process all the information and feelings she can’t deal with. My son was also like this, but as I am an Aspie I knew the best way to help him. It is important that the feelings come out internalising causes more problems when they are teens.
    Don’t take it to heart though the screaming and flapping is just a response to an overload. Christmas is extreme overload everything is changing constantly, there is more noise and more rush. As an aspie I know this all builds up. I am 41 years old and only just realising the causes of my sudden mood changes.
    The good thing is… you are here learning from this autistic community how to help your little girl. So she will learn how to process in a positive way and learn to take the time to understand everything that is part of her aspieness.
    Love and hugs.
    Lisa. xx 🙂

    1. Thank you so much for your insight and courage in expressing it to us that don’t [but are trying to!] understand. You are right, it’s definitely overload, and life has been changing for us. Maybe it has been building up…
      I am here to learn; is there anything you can think of during the throes of a meltdown to keep in mind? I’m sure it’s personal and different for everyone, but if you could imagine yourself as my two-year old, what would you tell me to do/don’t do/think? What were some of your ‘best ways to help’ your son, that you mentioned above? I would welcome any constructive input.
      Thanks again, I’m glad you are here!
      xo
      Daleth

  2. I want to honor you for the grace, kindness, intelligence you bring to every one of our conversations. I wouldn’t know what you are going through if you didn’t have this blog, and I appreciate that you have respected our roles through the semester. Still, now, I want you to know that I hope we can say “hi,” now and again, share a cup of tea and talk about poetry and novels, and if not, that I will be following this beautiful, sad, important blog. As for your question, I don’t think the kind of week you are describing will ever be less painful, but even in this blog, you yourself speak of the ups and downs of it, the pain but also the relief of moments you call angelic. As she grows, I hope those moments increase for both of you.
    Lisa’s comments helped me gain perspective (thank you); your daughter will keep growing up.

    1. Thank you, thank you! I fully plan on keeping in touch, and perhaps taking you up on an invitation to review poetry over tea. Creative outlets (right now mainly painting) have been my faithful companions during this semester. As my art teacher stated so eloquently, “your art will become a close, intimate friend, always there for you when you need it most.” I hope that writing can become a better friend for me; I expect for your insightful and inspiring presence to be around for that. 😉

  3. Oh sweetheart, you just described my son at 2 😦
    I honestly feel your pain, but please believe me that it gets a little easier as they grow older and learn more how to regulate themselves.
    And Lisa is right….this time of year is chaos for these little cherubs…
    I hope this week is kinder to you x

  4. We can hope that when she is able to clearly say how much she loves and appreciates you, you’ll be able to say this path has gotten a bit better.

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