A Different Kind of “Tired.” And an Aut-Nado.

A Different Kind of “Tired.” And an Aut-Nado.

More Caution than Coffee.
More Caution than Coffee.

I’m exhausted: not in the typical “Parent/Mommyhood is CRAZY,” kind of tired, but a different type of tired: a new, unfamiliar type of tired that doesn’t seem to go away.  I’ve been trying, unsuccessfully, for weeks now to find the words to describe this “mental fatigue” to my husband.  My hope is that other ASD parents have felt similarly, and can advise me on how to move past this.

This is about right....
This is about right….

See, I have technically been the parent of an autistic child now for 12 years.  However, his diagnosis wasn’t formalized until this past school year, and that is how I know this is a different kind of tired.  It is since his formal diagnosis that I have experienced this “different kind of tired.”

I keep saying “my brain hurts.”  That is the only way that I can describe how I am feeling.  The past 6 months has been a whirlwind for me: from the crushing blow of the initial diagnosis; to the grieving process; to the realization that my child will require up to 40 hours a week of therapy; and the guilt of not intervening sooner; amongst countless other things.  It’s been a doozy on my whole family.  It’s like an autism tornado (Aut-nado? Another great movie idea?) has ravaged or lives and flipped everything upside down.

Look out, Toto. It's an Aut-Nado.
Look out, Toto. It’s an Aut-Nado.

But, instead of looking around and seeing the devastation – you look around and everything is the same.  Now after a tornado, if you look around and everything is okay, most people would consider themselves lucky.  Or they would just summarize “Oh, thank goodness Toto, we are back in freaking Kansas.”

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And if he doesn’t have a meltdown, any more “parenting advice and I will meltdown…

However, after an “Aut-Nado,” when you look around and everything looks the same, a feeling of despair swells over you.  See, everything you are doing is supposed to make things better.  That is why you are doing 40 plus hours of ABA (Applied Behavior Analysis) a week, plus speech therapy, occupational therapy, social skills groups, and tutoring.  This is why all your time is spent trolling websites and researching article after article, trying to make sense of the vast amount of information, and misinformation, that is available to us.  This is why you are doing so much: you are wanting to see a change.

As a newly diagnosed ASD parent, our mind is constantly learning.  We are learning from the books we are given, we are learning from our children’s therapists, we are learning from the research that we are constantly doing, and no matter what it may appear we are doing — we are constantly learning.  For every answer that we find, we uncover a dozen (or more) questions.  Is my childs’ behavior due to his autism or his AD/HD?  Where do I draw that line?  Is he fidgeting or stimming (there is a difference.)? How do I de-escalate this meltdown?  What did his ABA therapist tell me to do again? I’m supposed to make this quantifiable, how do I quantify the fact that I want him to sit still?

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From every angle we are getting parenting advice. The best advice comes from our newly adopted autism ABA team-members: they really “get it” and they are able to make some sense of his illogical behavior.  Sometimes good advice can come from fellow ASD parents, which we spend all our time chatting with online, but even then sometimes we will receive conflicting information.  Then everyone else seems to chime in: even people that you haven’t seen or spoken to since high school want to chime in.  My favorite is always the advice from people who not only lack experience in dealing with an autistic child, but aren’t even parents at all. This crowd is notorious for saying things like “autism isn’t real,” “autism is over-diagnosed,” “autism is just due to bad parenting,” “You just need to be more firm! ” and “your child doesn’t seem like they have autism, are you sure?”  Five minutes alone with him, and forty five illogical questions later, and I assure you, you’ll pick up the ASD vibe, my friend.

Can I tattoo this on my forehead?
Can I tattoo this on my forehead?

But I’m a good friend and a (relatively) nice person so I try to focus on that persons good intentions.  I tell myself “they are just trying to help,” and then spend another half hour educating them.  This takes time and energy away from the ongoing research that I’m constantly doing, as well as time and energy away from the seventeen other things I need to be doing.

I'm learning how to read his "code."  SLOWLY.
I’m learning how to read his “code.” SLOWLY.

In addition to all this “mind work” that’s battling inside my cranium, there is the ongoing battle with the school system.  Apparently, when a child has higher-functioning autism, and their grades are average or better, then they don’t need any educational supports in place, according to our local school board (the Americans with Disabilities Act, or ADA, and the Individuals with Disabilities Education Act, or IDEA, would vehemently disagree).  As parents of a child with autism, more energy than one could imagine is expended fighting the school system for simple accommodations that (ironically) don’t even cost the school a single penny.  For example, accommodations like allowing the child the opportunity to leave the classroom when they are feeling overwhelmed, or to change out for PE in a private bathroom, are nearly impossible for a child with high-functioning-autism to get.  So, instead of your child being protected, what happens instead your child is tortured, taunted and bullied by both the other children and the schools staff: every single day.  Every day you send your child to school, you can make a pretty big bet that something horrible will happen to them, and when your child comes home, you will have lost another puzzle piece of them.  Soon their behaviors regress at an exponential rate and they begin having nightmares.  Suddenly getting them out the door in the morning becomes almost impossible: not because they dislike school, but because they are afraid for their safety.

So while you fight the school, you also worry about the psychological impacts of sending him to school every day.  At this point, if I’m able to avoid long term PTSD with my child, it will be an absolute miracle.

My hero amazes me every day....
My hero amazes me every day….despite the exhaustion.

On top of all of this, your child is still exhibiting the behaviors that prompted you to seek help in the first place.  In my household, that’s hundreds of questions daily (many of which I have no answer), meltdowns over everything, a lack of social understanding and awareness, over-stimulation by normal/ordinary things,  a very rigid, and exhausting way of thinking,  and a constant need for him to be in our “space.”  I will honest, I am more patient than most would be with my child.  Partially because I’m so very fond of him, and partially because he is an only child, and over the years I’ve developed quite a “Cassius tolerance.”

supermom

However, when it is 9:32 pm, I’m out.  His bedtime is 9:30, and if it gets past 9:30 and I’m still dealing with meltdowns and his rigid thinking, I lose my patience.  Fair and square.  As I’ve learned more about autism, I’m trying to find more patience and understanding.  At first, I was doing okay.

photo 4(1)

The past few weeks, though, I’ve noticed that fuse is getting shorter and shorter.  When asked what is wrong, the only thing I can say is “my brain just hurts.”

    • My brain is tired from the meltdowns.

    • My brain is tired from explaining his social awkwardness to strangers.

    • My brain is tired from his rigid thinking.

    • My brain is tired from all the questions.

    • My brain is tired from explaining everything to him.

    • My brain is tired from being “on” the job 24/7.

    • My brain is tired from trying to learn so much about how to appropriately handle his stimming and meltdowns according to ABA theory.

    • My brain is tired from fighting with the insurance company

    • My brain is VERY tired of fighting with his school.

    • My brain is tired from fighting with him and my husband about him.

And my brain is tired from all the hours of therapy we are initiating, only to look around my house and see that everything seems the same.  Sometimes it feels like the only difference now is that I am insanely busy and overwhelmed.

Well, to be honest, I won't ever want to give up.  He is too amazing.
Well, to be honest, I won’t ever want to give up. He is too amazing. But I am tired.

I feel it’s important to emphasize that this a new kind of tired.  A tired I’ve never before experienced — even when I was working two jobs,  going to nursing school full-time and taking care of a kiddo while my husband was on deployment.  This is a different type of tired: a type of exhaustion that doesn’t improve with a nap or a good night’s rest, but somehow permeates into every conversation, every waking thought, and even my dreams.

photo 5

I may not see the devastation around me with my eyes — but I can feel the devastation of this “Aut-nado” with my brain.

Granted, if one is looking for huge differences, one would be quickly disappointed.  Cassius is making progress — and even if it is slow progress, it is still progress.  This is a mantra I keep replaying in my head, over and over.

Slow Progress is STILL Progress...
Slow Progress is STILL Progress…

Which, now that I think about it, might make my brain more tired, but I digress.

I’m wondering if anyone out there has ever felt this way before?  And how did you get stronger? I know that I’ll get through this, I just am not quite sure how.

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23 responses to “A Different Kind of “Tired.” And an Aut-Nado.

  1. You have a great way of expressing everything so clearly. I have some of those problems, and yes it is tiring. You have my sympathy.

    There’s so much information out there and finding relevent bits is hard, because each kid and each family is different – there is so much varience within Autistic Spectrum Conditions. And don’t even get me started on the unsolicited advice that wouldn’t be helpful to anyone….

    I don’t have any magic survival tips, but I hope it helps a little if I tell you that you sound like an excellent mother doing all the right things. (It’s just that doing all the right things is hard work, especially when you’re playing catch up).

    Don’t forget that he needs his excellent mom and you need to look after her too so she can look after him. Make sure you have some time in your week for you. (Easier to type than do, I know).

    Good luck!

    Liked by 1 person

    • ::hugs:: that means the absolute world to me. I am trying my very best, I just hope my best will be good enough! XOXO!!!

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  2. I completely know how you feel! Having a child on the spectrum is exhausting. You get tired of the meltdowns, of their inability to be flexible. It is not easy. But yet everyday, we get up out of bed (even when our brain is screaming hide under the covers!!), and face the days challenges hoping today will be better than the yesterday. I can’t say it gets better because honestly, it doesn’t. And some days it gets worse. I have days where the only thing I can do is cry. But I also know I was chosen to be his mother for a reason. And so were you! We live in times where parents are literally taking their children’s lives because their child cried or whined. I can’t even imagine where my Braylon would be if I had not been chosen to be his mother. He probably wouldn’t be living anymore. He chose me, of all people. I have learned quite a bit about what it means to unconditionally love someone. So many people say they love their spouse or children unconditionally. But do you think they would feel the sane way if they had your son? There is a great chance they might not. But you do! That is why you do the 40 hrs of ABA, you deal with the meltdowns, and you feel tired. Because of how much you love him you are willing to give every part of yourself for him. You are an amazing mother!! Hugs!!!!!

    Liked by 1 person

    • Yay! I’m NOT crazy and I’m NOT alone!!!

      What do you do on the harder days to get through? I think I need to turn my brain off. I’m open and willing to try anything! 🙂

      Like

    • And you are so right. Nobody would be as patient with him as I am–even his father gets angry and frustrated.

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  3. You poor thing, I hear you. And I understand. I have 3 kids – two on the spectrum, with co-morbids. The third is a toddler, nuff said. I am tired. I’ve been trying to find dietary or vitamin deficiency answers to my tiredness, but I’m coming to the conclusion it might be just my life (God help me).

    I also don’t have any answers, except that it’s very hard to feel like an adequate parent in our circumstances. My husband is always quoting Donald Winnicott to me – I don’t know any more about Winnicott other than he believed in “good enough” parenting – ie, those times when you snap, coz the patience is all used up? I get you. I feel crap about that too. I tell my kids I turn into a werewolf after 8pm. They smile at me, so maybe I’m not as scary as I think. (I think all mothers turn into werewolves at times, they’re just not honest about it.)

    I can see the effort and love you give your boy. No one else could do that for him, so you are already winning. As for the tiredness…..whew, I don’t know….do less housework?? Do less of anything you can drop and don’t feel bad about it! I’m trying on the worst days to accept and not feel bad that it’s just going to be a day when all I can do is put one foot ahead of the other. We can put a lot of mental pressure on ourselves. All the best to you!!

    Liked by 1 person

    • I so deeply appreciate your insight! I’m really trying to focus my energy on the things I HAVE to do, and trying to let everything else slide. It’s so good to hear that I’m NOT alone in this. I am currently doing the following: Taking vitamin B12 and Vitamin D (I’m chronically depleted in those vitamins, as well as others), I’m taking a multi-vitamin as well. I also recently added L-Tyrosene (three times a day), L-Carnitine (once a day), 5-HTP (200 mgs at night), and S-AME (400 mgs in the morning). I’m also taking a prescription for a medication called Provigil — it’s expensive but it’s like prescription strength caffeine. Of all of these things, I think the B12, the 5-HTP, and the Provigil seems to help a bit with my physical exhaustion (I have a lot of chronic health issues, unfortunately), but I’m still struggling with this “brain tired,” thing.

      I so deeply appreciate your thoughts! I am going to set up Respite care and start utilizing that in the coming weeks. I wonder if that will make a difference? I also probably need to focus on another hobby or something — something that does not have anything to do with Autism. For some reason, Autism is the only thing that is swimming around in my head, practically 24/7 right now….

      If I find something that seems to help I will definitaly pass it along. Because feeling like **this** is miserable.

      Tonight, when Christian came home from school, within 10 MINUTES I was already snapping at him!!! What is the matter with me?????? This HAS to get better……..SOON.

      Like

      • Mmm….you know, it sounds like your brain/body is trying to tell you something – you are exhausted. We only have so much energy…….If you find something that helps PLEASE let me know!! I’ve tried a few things including B12, but I still get such lows. I reckon respite care will help you – you need some space to clear your head! And remember, our kids, as lovely as they are, would try the patience of a saint, so I doubt there’s anything the matter with you besides exhaustion!

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      • I will most certainly let you know how it goes! I have been doing Vitamin D and B12, as well as 5HTP and S-AME. Believe it or not, the B12 and the 5-HTP seems to be helping with the physical side of the exhaustion. The mental side, I think, is just going to require me to “learn” how to “turn off my brain! It’s much easier said than done, unfortunately. 🙂 I’ll let you know if the respite care helps…. Thank you so much for your supprt. It’s just so hard sometimes!

        Way harder than I ever thought possible!

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  4. Respite sounds good. And scheduling some you time while he’s at school sounds good too. If you can manage 40 hrs a week for him how about 20-30 mins 5 days a week for you? Walk/run/swim/meditate/read a book/knit/powernap just before he comes home, whatever works for you, just not more ASD research!

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  5. You’re right! We both wrote about the same thing! 😀 That makes me feel tremendously better. My hope with my post was that others in similar situations wouldn’t think they were feeling this way alone. Thanks for sharing the link with me.

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    • It’s a very unique kind of tired, isn’t it? It’s something I never before have ever experienced.

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      • Absolutely. Like every single cell in your body has just run 5 back-to-back marathons. And you just took all 4 years of college finals in one day. It’s all-encompassing exhaustion. And it’s very hard to explain to my friends who don’t have special needs kids.

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      • That’s a great analogy. And nobody else really “gets it”. They all think I’m going crazy! Maybe I am. ::sigh::

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  6. Pingback: Learning to Balance Give and Take | My Puzzling Piece: A Glance Into A Puzzling Existance·

  7. I relate to this post on so many levels. I’m not in your exact position, but my son was also recently diagnosed and we have just begun ABA therapy. I will definitely be reading more of your posts about it. I’m blogging about it as well. You are not alone in the brain pain!

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  8. Thank you for all of the effort on this blog. My mom really loves setting aside time for investigation and it’s simple to grasp why. A lot of people learn all relating to the powerful mode you render helpful information through this web blog and improve response from some others on that area plus my girl is certainly being taught a lot. Have fun with the remaining portion of the new year. You have been conducting a first class job.

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