Top 11 Hardest Things About Our Autism

Autism is a funny thing.  It’s a paradox of easy and difficult.  It’s an emotional roller coaster for parents.  It’s the biggest triumph vs awful pitfalls.  It’s constant ups and downs.  Here is my top 11 hardest part’s of Silas’ autism…I was going to do 10 but I thought of another one.

Top 11 hardest:

  1. Finding food he will eat – Silas is also allergic to peanuts.  It’s hard to cook a supper the whole family will enjoy.  I’m usually making Silas the same supper but deconstructed and completely plain.
  2. Communication – it has gotten easier over the years but he still has a hard time telling me how he’s feeling.  I’m grateful that we’re out of the “your son has a retardation in speech” thing.  The doctor was very wrong about that one.
  3. Isolation – This was incredibly hard for years!!  It’s hard to take a child with autism anywhere and I found myself staying at home a LOT.  There’s still activities or events that we completely avoid due to both the peanut allergy and the autism.
  4. Structure – I’m a very unstructured person living with someone who thrives off structure.  He’s now stimming a lot more because school is out.  If we deviate from the plan then there’s a world-class meltdown.  Again…this has gotten a lot easier over the years.  The professionals kept telling me to structure everything and I refused.  The world isn’t a structured place, he needs to learn to cope with that.  Other kids, though, simply could not thrive in those circumstances
  5. Social Suicide – it’s hard to sit there and watch Silas make many social mistakes with his friends.  I try to continue to be grateful that he even wants to play in the first place.  I just hope he learns from his mistakes while he is still young and kids are most forgiving.
  6. Constant need to be first – he must be first in every line, he wants the biggest of everything…always has to be one up to a really obsessive degree…which leads us to…..
  7. Dealing with obsessions – most of Silas’ obsessions are fun.  He goes through phases, like last September’s dreaded public washroom phase where it becomes incredibly frustrating and inconvenient.  I’ve grown very very very used to hearing him say the same things over and over and over and over…
  8. Asking the same question constantly – this I need to try to breathe through.  If he asks for something and I will say yes…he asks for it again just to hear me say yes again.  For kids with autism this is a way of feeling in control of their world.  For parents it can get incredibly frustrating.  I answer the same questions all day long.  Even if it’s not a yes or no question.
  9. Meltdowns – we go through phases where these happen on a constant basis.  It’s not like dealing with a regular child’s meltdown, there’s so many things to consider.  You need to have learned to speak their language, you need to assess all aspects of the sensory situation, you need to brace yourself for all levels of pain, you have to deal with all of this in public…often.  Some kids with autism get set off by incredibly strange things and need incredibly strange rituals to calm them down.  It’s putting a crazy puzzle together and you never quite figure it out.  It’s the very worst when the child still isn’t verbal yet.
  10. Regression – Nothing is more heartbreaking than taking 10 steps backwards.  We’ve been through it so many times.  So much progress then a complete regression where his whole being falls apart.  I cannot stand it when he goes backwards…it’s so hard to see and cope with.
  11. Aggression – this is absolutely the hardest, most painful, most devastating part of Silas’ autism.  Words cannot express the
    Ikey's poor scarred cheek

    pain this has brought to my heart, the stress it gives me, the worry, the fear.  Isaac has been the brunt of this since the day he was born.  That has been the hardest for me.  Seeing brutal things happen to my baby.  Isaac has a face full of scars from his brother and no amount of self-talk/therapy is going to take the guilt out of my heart for that.  I should have been closer, I should have known it was going to happen, I shouldn’t have let them play alone.  No matter WHO is hurting your baby, it makes you just as mad. I have ninja-reflexes from it now.  Our whole family carries the scars of this aggression, we’ve all yelled out in pain, we’ve all had to swallow the offensive nature of this and try to not be mad at him for it.  I find it nearly impossible.  I find it heart wrenching.  It’s frustrating beyond all reason and if I could wish it away from my son, I would in a heartbeat.

Stay tuned for next time when I go over the top 10 amazing things about Silas’ autism

9 comments

  1. I hope your are not yet getting tired of me telling you what an amazing and awesome mommy you are. Because you will read it from me again and again: the way you are dealing with your situation and what it means for ALL of your family still impresses and amazes me. Not to mention the many things you you taught me about autism.

    I can’t wait to read about the 10 amazing things of Silas’ autism.

  2. I relate to every single one of the things on your list. It’s hard to pick “the hardest” ,but for me, it’s probably the social suicide. My heart breaks for her every time a child walks away confused,or because she screamed at him/her. Every time I see a child staring at her when she stims (she flaps) it breaks my heart. She realizes she is different and has commented that the kids “don’t like her”. I look forward to your amazing list- there are so many more AMAZING things than hard things. Thank you for your honesty.

  3. No. 5 – Social Suicide – that one is SO HARD for me, too. Making me feel teary just to think about this and write it down. And as they get older and peers become more important, it just gets worse 🙁

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