30 Thoughts on Autism

30ThoughtsOnAutism

My son was diagnosed in April of 2014 with Autism. We already knew but now he is official, it’s like he got the Good Housekeeping Seal of Autism Approval. Yay us.

Since coming out with our exciting diagnosis people have offered condolences (he’s not dying, but thanks), some have asked who diagnosed him (a random dude at the bus depot, he seemed legit enough), and others have pointed out that we needed a holistic approach to his issues (trust me I have tried, and short of having a Shaman at my house there is nothing left).

I do realize everyone is trying to help, because that is what people do when they don’t know what to do – they offer advice. I truly appreciate 99% of that advice, it takes a village after all. My family has been blessed with being surrounded by those that care and want the best for our son. That being said it is hard for those who do not have an Autistic child in their lives to understand. So here ya go…

  1. You cringe at the last 3 seconds of any sporting event that has a buzzer cause you are astutely aware of loud noises and their impact on your child.
  2. The demise of the Guest Assistance Card at Walt Disney World means you can’t visit without a major pain in the ass. Thanks for ruining the most magical place Disney, that was awesome.
  3. You watch other kids celebrate a team win at the local ice cream joint and realize your child probably won’t ever experience that, it might bring a tear to your eye (if you are human that is).
  4. You have same clothing pieces in multiple colors because finally you found something that is comfy and easy to get dressed in.
  5. You own books called: Parenting Children with ADHD, The Out of Sync Child, We’ve Got Issues, etc.
  6. You can spot another child with Autism a mile away, sometimes even before their own parents can spot them.
  7. You have accepted that the noises and movement that comes with your child is just the way it is, deal with it other people and please stop staring.
  8. You have named tics funny things – like ‘The Gary Coleman’.
  9. You see other kids playing together and wish your kid would participate.
  10. You are slowly accepting that your kid is ok not participating regardless of how much you want him too.
  11. Your kid loves his house, more than someone with Agoraphobia.
  12. You spend a lot of time talking to their teachers about things that most parents never dream of having a conversation about – could you please just STAY IN THE GOD DAMN CLASSROOM?! (BTW the answer is no because the sounds and lights are overwhelming and he gets hot, and sometimes he just needs to get up and walk around…sigh)
  13. You have all sorts of tools at your house – wiggle chairs, weighted blankets, T chewers, etc. You have since abandoned 99% of these but at one time you had hope that it would be the magic bullet (it wasn’t).
  14. Your child has a special connection with their pets that no one else in your house has.
  15. You child has a deep sensitivity to issues that surprise you every time they come up.
  16. Your kid may break down in tears of frustration over something simple, like writing a Thank You card – which is why you won’t get one from us, sorry I just don’t have the patience to suffer through this hell. Just know he appreciates your gift, really.
  17. You now have watched every documentary on Lincoln, The Civil War, Shipwrecks, etc.
  18. Shark week is a national holiday.
  19. You have vacationed at places like – Whitefish Point because the Edmund Fitzgerald sank there, duh.
  20. You have listened to the Gordon Lightfoot song about the Edmund Fitzgerald so many times that at the height of this obsession you were contemplating throwing all music playing devices out.
  21. Your child has a Jekyll and Hyde personality.
  22. Your other kids get invited to parties and events all the time, but your Autistic child doesn’t. It breaks your heart every time.
  23. You have searched high and low for everything and anything that may help your kid, devoting hours and major dollars, by now we could have circled the world.
  24. When you see your kids teacher walking your way you clench your jaw and brace yourself.
  25. You are beyond shocked and delighted when you hear a positive thing about school from your kid or their teacher.
  26. You can ask your kid a question and will most likely get the truth, life is black and white. There is no grey area.
  27. You constantly feel guilty because your Autistic kid takes more of your energy than your other kids do.
  28. Your Autistic kid has a deep love for you that warms your heart beyond your wildest dreams. They may not show it all the time but you have caught glimpses of it.
  29. You became scuba certified because your child loves the water, it is completely inconsequential that you don’t.
  30. You spend an inordinate amount of time worrying about the long term success of your child.

Autism is a part of our lives, and even though it brings with it many challenges it also brings many amazing things that we would have never have experienced if it weren’t for Autism. Life gives you all sorts of shit, you can choose to find a work around or just keep stepping in shit. We are always building bridges over the many piles of shit, if nothing else it keeps us on our toes.

 

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  1. Blessings to you and your son. There are so many hard roads in life and this is one of them. It’s clear that you are doing everything possible for your beloved child and really, that’s all that counts. Will hold you all in the light.

    • Thank you Carol, and I absolutely love that phrase – I will hold you all in light. Wow.

  2. Thank you for helping outsiders see a little bit more about the day-to-day realities of living with an autistic family member. You are doing a great job advocating for your child. Sorry that schools, sporting events and now Disney aren’t doing more to be accepting and accommodating.

    • It would be nice if institutions and industries could realize that they are only hurting the kids by being so exclusionary. Everyone is so worried about being sued in today’s world that no one thinks about the kids that have to live with their one size fits all mentality. I pray that one day that changes, until then I will be constantly reinventing the wheel for my son – one spoke at a time.

  3. Thank you. And not congratulations, because that would be condescending, but its really inspiring that you manage to keep your humour and lightness even when addressing something so serious – I know it might be wrong to say, but it makes the topic more accessible for people who haven’t experienced it. Thank you again for this post.

    • It took me a long time to find the funny in the situation, but the reality is there is always humor if you look for it. Who else can tout that amazing White Fish Point trip on their life long bucket list? I hope that others start to realize that the Autism isn’t the end, of course my son has high functioning and there is a huge difference between someone like him and those that are on the other end of the spectrum. But the reality is that burying your head in the sand doesn’t make it better for anyone.

      • Mary says:

        We also did White fish point. Same reason. Mine is supposedly ADHD, and God, the constant jittering & fiddling drives me up a wall. Don’t even realize I’m comforting him half the time. He never sleeps , never stops moving… He’s also very sweet & generous & easily fooled by “friends”. He makes my heart hurt for him & is a huge know-it-all. I love him so much. Also, I’m one of those moms who jumps when your son makes the noises, but I’m only watching you to maybe learn a new parenting trick.

  4. This is just great and perfect!! I would also add that whenever anyone from school calls you don’t even let them finish before you say, Is everything alright? Lol! As you know we don’t have the good housekeeping seal of Autism yet, but i so get this. Love you!!!!! You are an amazing mom and you have two amazing kids!!!! xoxo

    • I have a mini-panic attack before I even answer the phone. Now they know to start with, “Everything’s fine…”!

  5. Gina says:

    Evil Joy shared this, and as the mom of a boy with high functioning autism, I had to read it. Great read, lots of chuckles and a few heart-tugs. I can relate to pretty much everything on this list. Replace Edmund Fitzgerald with James Bond, and civil war stuff with Star Wars stuff, throw in fixations with water towers and manhole covers, and this could be my list. Every day brings a new challenge, and most days bring a new joy. I wish you many more joys than challenges.

    • Love me some Evil Joy! Funny how they get fixated on stuff. Have you gone to the spy museum in DC? Whole section devoted to Bond…very cool for the Bond lovers out there. I wish you the same as well.

  6. I can relate to so much of this, having a nine year old son who has Down syndrome and sensory processing issues. “Building bridges over many piles of shit,” love this description, so true! #23 is something I think about a lot as I struggle with the school every year. Sometimes I think he would learn a lot more traveling the world!

    • We have started traveling in the last year. This year me and him are going to Dominica for scuba diving. He is very excited, we are actively trying to find alternative career choices for him bc the reality is he will not be the sit at a desk all day guy like his dad or me.

  7. Thank goodness you have a strong spirit and a great sense of humor. That can only help your son. I have closely watched others with kids on the spectrum who try to force their kid to be “normal” and it’s not only heartbreaking it’s really quite scary.

    • Would I love to be able to squish my square peg kid into the circle whole – damn right I would. But the reality is we both would just be frustrated. It took me some time to get to this point. Thank you for saying I have a great sense of humor though! Woo-hoo!!

  8. mike says:

    thank you for sharing and educating us. you are pretty amazing.

  9. Forwarded to my sister who has a teenage son on the spectrum. I get so much of your list from spending time with him. Love that you can add a touch of humor to a serious subject to make it relatable.

    • I hope she likes it, and thank you for sending it her way. Humor is definitely hard to find but well…if it wasn’t for that I might lose my mind.

  10. My teenager was recently confirmed to be on the spectrum and I can relate to your feeling of relief. Not that we *want* our kids to have special needs, but because having a diagnosis really does help. Getting the right support is as tricky as it is important, and can be downright impossible unless the school system and care providers have that piece of paper that says “ASD.”

    If I wrote a list like this, there would be SO MUCH cussing on it, lol. Hopefully I’ll get to a more refined version (like the one you have here) soon.

    • I had to edit it a bunch to take out the curses. I figured it stood on it’s own without it and didn’t want to upset some people who could actually use this for some smiles. But yeah I had quite a few f-bombs.

  11. I can spot a kid with autism from a mile away, too! There was a little guy with autism at the place I worked this weekend. His parents didn’t mention it at all, but I could tell from the moment he started telling me about airplanes while hopping and flapping with joy. And during circle time he told this story about how one time he used his mom’s tablet without asking, and he got a consequence, and he tried to hug his mom and say sorry but she was still mad, and he got tears in his eyes while he was telling us. He was one of my favorite little dudes there.

    • This makes me so sad that he was still upset about it. My son is like that he holds onto things for EVER. I swear I am still hearing about some pain in the ass kid that was in his class 4 years ago. I am glad you too the time to hang with him. He sounds like a special little man.

  12. Thank you for sharing and by doing so giving insight to something some will never understand.

    • It is definitely hard to understand and this list is by no means encompassing but it hits the highlights.

  13. Many, but not all, of these also apply to kids with ADD/ADHD. Spending money on things to help them, bracing yourself when the teacher wants to talk to you, being thrilled to hear something positive. I have an ADD and an ADHD (and am ADD myself, but my kids are medicated and I am no…look! A shiny thing! Sorry–little ADD humor there), and sometimes it’s hard even for someone who gets it to be patient with the distractibility, the tendency to drift into their own world, the attraction of a shiny thing. Parenting is hard enough, but I try to remind myself of the old saying about being sent the challenges we have the strength to bear. I was given my ADD and ADHD children because I’m the mother they needed to help them grow up to be successful, happy, loved, appreciated people.

  14. There is no doubt that everyone reading this post will be helped by it. Either because they will nod along as they completely “get it” or because they will learn what this reality is like for so many parents. You are amazing, especially because you are so honest about the realities of your situation. :)-The Dose Girls

    • Thanks!! I hope so, we need a little humor to handle the reality of life in every part I think.

  15. Jeannie Buck says:

    #31 – There is no such thing as “normal” or “typical,” and #32 – you never, ever apologize for your child. We are kindred spirits, my dear…our family took a vacation stop at home of former president Rutherford B. Hayes (don’t be a hater…) I actually highly recommend it! Oh, and the empathy! It’s ironic that kids who don’t “get” social interaction can feel so much and so deeply when others have been wronged. Wouldn’t trade it…

  16. Peggy says:

    Dear Alyson,
    As a driver (the short bus) of special needs kids for nearly 30yrs. its refreshing to see a parent spell out the difficulties and joys of living with Autism so honestly and humorously. I personally love working with these kids, I learn something new everyday. Its sometimes sad that they don’t always see just how, smart ,creative, caring and ass kicking funny they are.
    I’m sorry for the educators that clearly need some educating, because a little would go along way! A great documentary is NEROTYPICAL. Most of the people featured have fascinating insights to share.

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