Autism, Autism, Autism and Fibromylgia

As many of you know (and maybe some of you don’t) Autism is a profoundly dynamic disorder. There are many sides to Autism. Some kids and families do just fine. Some families, mine included, struggle each and every day. Today is the worst day I can remember in recent history. I am so overwhelmed and stressed out that I just can’t function properly right now.

I’m at the point where I just want to beat my head into the wall just to make it all stop. Let me start by saying that I am FAR from perfect. In fact sometimes I’m as FAR from perfect as one can be. I loose my temper and raise my voice far to often. The reality is that I’m human. I’m a human that has been pushed SO FAR BEYOND what I can physically and emotionally handle that I can’t even think anymore. It’s always something. There is NEVER peace and quiet, NEVER.

Lizze is in CONSTANT pain which understandably puts her in a bad mood. She has had a migraine for WEEKS now. Not hours, not days, WEEKS. I try to get her to go to the hospital because they have more tools at their disposal that could help and she won’t. I understand why she doesn’t, I really do. There is a “stigma” attached to those who suffer from Fibromylgia. Many times people, doctors, nurses and even paramedics tend to see these people as “drug seekers”. They have no physical signs of injury but yet they hurt. Lizze is very aware of this stigma and so she avoids the hospital.

I hate that society has put people like my wife into this position. A position where they would rather suffer then go to the hospital (where you should be able to get help) and be judged or get the “look” from the hospital staff. I have taken in my share of “drug seekers” to the hospital. We would sometimes refer to them as “frequent fliers”. So I generally know how to differentiate between someone like my wife and some one looking for a fix. I’ve told her many times that I know shes not seeking pain killers, only relief but to many bad experiences lead to her just not wanting to go anymore. She used to be able to hide the pain and not let it affect her but not so much anymore. I couldn’t always tell but now it’s way more obvious. This is so frustrating and exhausting for me and I can only imagine what it’s like for her.

The boys, I love my boys. They are driving me CRAZY. Gavin is functioning on such a reduced level that it almost doesn’t seem possible for him to actually be 11 years old. In reality he isn’t. His outsides are 11 years of age but his insides are much, much younger. He can’t even remember if he had his meds anymore. Gavin used to NEVER forget things like that. He was always reminding us that he needs his meds. Now, I could give him his night time meds and then ask him 5 minutes later if he’d had them yet and he would not be able to remember. I am literally having to think for him much of the time anymore. I love him but he lacks ANY sort of “common sense”. It’s a lot of things like, “Gavin, that’s HOT”, “Gavin don’t do that”, “Gavin walking feet”, “Gavin use the handrail”, “Gavin NO running up the stairs” and “Gavin we don’t eat things that aren’t food”. It’s CONSTANT. It NEVER stops and he RARELY if EVER learns from his mistakes. He self-injures frequently and had taught BOTH his brothers to do the same. As much as we try to minimize the negative impact Gavin can have on his younger brothers it never seems to make much difference. I feel terrible about thinking these things but I know that it’s “normal” for me to feel that way. By saying this here, I not saying it to him and I suppose that’s a positive, right?

Elliott is showing more and more signs of ADHD. Although Dr. Pattie and I think it may just be anxiety presenting as hyperactivity. It makes sense  but the cause really doesn’t matter when the impact is the same regardless. I love Elliott to itty bitty pieces but SO whinny and SO LOUD ALL the time. I can’t ask him ANYTHING without him unraveling. I do my very best to have patience but it’s just getting more and more challenging to find any patience for anyone anymore.

Emmett is SUCH a handful. While we are making progress in the land of communication we still struggle 95% of the time to figure out why he’s upset. He lashes out pretty regularly and assaults Lizze, Elliott and Gavin on a regular basis. Emmett has such a difficult time communicating most of the time that it just ends up with him screaming this bloodcurdling scream, over and over and over again. He has NO fear and so is a VERY real risk to himself and others. Last year he ran into and subsequently through Elliott’s second story windows. He luckily managed to not get hurt but that was beyond luck. He would NEVER be that lucky again. I struggle with EVERYTHING having to do with Emmett. I love him so much yet he pushes me beyond the brink of exhaustion and being overwhelmed. He’s only 2 1/2 years old. What’s life going to be like in a few years? That thought literally TERRIFIES me.

I’ve said this MANY times before and I’m sure I’ll say it again. I think God significantly over estimated my abilities when he decided that this would be my path through life. There is just to much responsibility and not enough or me left to handle it…….

There are many sides to Autism but our side is not so cute and cuddly.

-lost and tired

4 comments

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  1. I often say that God has me mixed up with someone else and I'm not mad or anything, but I sure wish we'd get it all straight…
    Alas, if you believe in God, then you know this is not the case, cannot be the case.  I don't like it anymore than you do, but God rarely asks my opinion on these matters.
    I hope that you admit the exquisite absurdity of your current experience.  If you haven't said it aloud, then I strongly suggest that you do.  It will sound odd and almost like a cop out, but really, it will make you feel better to hear it, even if you're the one saying it.
    Don't shop for trouble, Rob. Emmet is very young and he has a lot ahead of him. There is promise in that, always. Try, try, try to concentrate on the here and now. And if you do believe in God, then remember the story of the lilies of the field and how He provides for them every day. This is hard and I'm very bad at it, but I do believe it helps, so I keep telling it to my self. Perhaps you'll have better luck with it. :).
    Tomorrow will come. You will get through that day. And the one after that.  And so forth and so on. That's the best we can hope for sometimes.  Ride that hope as hard has you have to. Most likely, none of this will be pleasant, but know that you *will* survive it. That's a good thing, no matter how it feels.
    Just survive.  Really.
    Regards, Leslie
     
     
     
     

  2. I know where you are, I'm there, too. When they sleep – you are too tired to enjoy that precious few minutes/hours of quiet.

    I'm sitting here wondering which one will wake up first and yell 'Mooooommmmyyyy'.

    Wishing you some sort of peace…

  3. dx~trench worn. i see you and I know that feeling (two weeks off would put 10 years back on your life?~but so, not a choice)

    yesterday, I had to put on Enya's "If I could be where you are" on repeat for hours to change all in the house…when I finally sang along all chaos stopped~instantly~who knew.

    a poem by Oriah Mountain Dreamer puts me back in my soul. my favorite lines…

    "I want to know if you can see beauty, even when it's not pretty, everyday and if you can source your own life from it's presents"

    "It doesn't interest me to know where you live or how much money you have. I want to know if you can get up, after the night of grief and despair, weary and bruised to the bone, and do what needs to be done to feed the children"

    and for your dear wife

    "It doesn't interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself; if you can bear the accusation of betrayal and not betray your own soul; if you can be faithless and there fore trustworthy."

    1. 🙂 🙂 thank you

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