Friday, April 22, 2011

Autism Fatigue

When you have children with Autism, April is supposed to have special significance as it is Autism Awareness Month. There are walks, fundraisers, blue lights, and everything puzzle related--from pins, car magnets, coffee mugs, earrings and more. Here's the thing about Autism Awareness;I am one of many parents who are painfully aware of Autism. I live with it 24/7/365. And while the premise of raising awareness for others is justified and worthy;I have to admit to having some Autism Fatigue right about now. My colleague and I were discussing all things Autism in the office one day and I asked her what her plans were for "recognizing" the month. Since April 2 was World Autism Day, we were reading about all sorts of plans and projects people from all over the world. Her response? "Autism Awareness happens everyday in my house. I live with it." Well put. We are weary veterans of the constant battles one must endure when you are the primary caregiver, advocate, and voice for your children with Autism. Right now, I'm a little weary. I'm tired; exhausted really. Emotionally, physically, mentally, and spiritually. I'm exhausted from the recent events in our life. I'm sleep-deprived, frustrated, teetering on the brink of explosive rage and running desperately low on hope. I'm drained from the last ER visit with B. and having the ER nurse remember us from past visits. (At least, bless her heart, she gets it and hasn't seen a need to call CPS on my Energizer Bunny-Running Calamity of a younger son.) It's a double-edge sword when your family rings a bell with medical professionals. However that is better than having to explain things to someone who should know better and feeling like your life has morphed into some bizarre variation of the scene from Rainman when they ask if your child's "artistic." I'm already tired of "team" education meetings and we have at least 2 more to go. I'm tired--as I'm sure countless thousand others are as well--of having to be proficient in a second language I don't recall ever being offered in school--Special-Edese. I am sick of acronyms too--IEP, CPSE, CSE, EI, OT, PT, ST, MT, IHP, FBA, BSP, and the rest. I find myself speaking in a jargon that an average lay person wouldn't be able to follow with terms like evals, differentials, meds, standard deviations, severe sensory seeking, safety concerns, 1:1 interaction, social deficiencies, etc. If I wanted to explain my children to someone like my mother in proper terminology, I might as well be describing 2 aliens since she wouldn't follow. I'm tired of having to plan every damn thing. I'm tired of the precision of our everyday excursions. There are military maneuvers I would bet that have far less planning for every possible scenarios. I'm tired of the mental checklist I keep in my head of what's in the house, what they will eat, what I can find along the way. Heaven forbid we run out of chocolate Teddy Grahams or mini-Hershey bars (only in the brown wrapper thank you very much) or strawberries, regardless of season. I am so frustrated that I must always have an endless bag of tricks and distractions for any trip, for any occasion. I HATE when the power goes out and I forgot to charge the portable DVD player. I am beyond sick of explaining why I pack chicken nuggets for every holiday gathering with family. It's been a decade now--GET OVER IT!! I'm tired of sensory needs--being over stimulated (usually in public) and the seeking behaviors. I'm fed-up with meltdowns. I want one. I feel I've earned one. (Maybe this is one now.) I'm tired of explaining things over and over and over and over. I am weary of pull-ups. I'm sick of buying them, lugging them, stashing them in the van and one in a coat pocket, and hearing how my little niece is almost out of them. Good for her; we're not. I am drained by countless Thomas the Tank Engine, Dora the Explorer, and Backyardigans songs with B. I'm exhausted by C. striving toward puberty but not understanding that repeating every saying will only get him in trouble. What happened to the Disney channel? It's not so Disney anymore. I hate a lot of mindless teeny-bopper pop songs that I must endure to decipher lyrics and explain what they mean. My dream soundtracks sound like some eerie nightmare of a twisted old Twilight episode. Many of us have far too much awareness of this month's focus. I've come up with some creative ideas for sharing that wealth of knowledge. Funny, but no one has taken me up on my offer to let them experience my world first hand by providing respite for a day or so. THAT would truly give you some Autism Awareness, along with processing issues, ADHD, medical needs, and other countless joys too numerous to list here. Lately, it has been tough to be part of the puzzle-pin sorority. As if all of that wasn't enough, I've experienced my first diagnosed migraine on top of it the past week. Really? Well, thanks for the rant and vent session. I'm off to cook dinner and to try to make the whole crew happy with the meatless requirement of Good Friday. And just so you don't think it's all gloomy here--B. has taken to asking for "his friend, Mommy." Awareness doesn't always mean sunshine and rainbows and it isn't always measured in large gestures and strides. Sometimes it is making it through another day and having the courage or tenacity to do it all over again. At least there will be chocolate to raid in a couple of days to fuel the journey.

11 comments:

  1. Wow. I get how you feel. It is exhausting to try and just do it all--all the time. I have some joys, but details seem to take over! Yikes!

    ReplyDelete
  2. Ty. I am in tears. I am right there with you. Couldnt have said it better. Im weary and at loss for words. Hang in there

    ReplyDelete
  3. Oh, sweet mom, I am so sorry for your frustration!! I am SO THERE!! Though my daughter, 11, is not autistic (she has CP), I feel the same frustrations. I feel I'll scream if I have to go through another day of guilt for being frustrated/angry at her for today's latest oddity, for lack of a better explanation, combined with yet another child in her Sunday School class (or wherever) publicly making fun of her, combined again with one of her brothers telling me how embarassed by her he is (like I can do anything about it)! Then an adult just says, "So what's wrong with her?" AAAAAUUURRGH!!! No, no, I'll just smile pleasantly, let it "roll off my back" and excuse myself to breathe and "get perspective." I hear you. I hate for it to sound like it does, but I'm so glad to see I'm not alone in this, that someone else sometimes feels this way. Thanks for sharing!

    ReplyDelete
  4. Thanks for the feedback! It's emotionally supportive and empowering to realize you aren't the only one who feels this way. I appreciate the sentiments.

    ReplyDelete
  5. I'm right there with you, sister! We have enough to do. Everyone else should be participating in awareness and educational events, not us--we already know!!!! BTW, I carry Excedrine Migraine everywhere I go. if you catch it early enough, it will nip it in the bud so you can keep on truckin'.

    ReplyDelete
  6. I....GET....THIS....
    I do. Thank you for writing this, I felt guilty for not being super psyched about Autism Awareness Month. Just like you said, we are aware all of the time.

    ReplyDelete
  7. I totally understand you when you mention “sleep-deprived”; As a matter of fact, today my son woke up at 1:45am. Thank God we can alternate (me and my wife), our sleep time; I don’t know how single parents make it. Explaining to others, you’re also right; No one fully understand how is like and all that change because of it. Really enjoy reading it, since it was very similar to my everyday life.

    ReplyDelete