What do you hate most about #Autism’s impact on your child?

Here is the disclaimer.  Hopefully, this will help to avoid some of the hate mail. Please keep in mind that I’m referring to the impact #Autism has on my kids. I’m not referring to my kids themselves.

My poor little Emmett John is in a fever flare again.  We noticed yesterday, that his tongue is full of little sores.  Typically, his mouth is full of really big sores when a flare up occurs. 

This is new to us and aren’t sure if this is better or worse than normal.

image
Note this picture is from a previous flare. Hopefully you get the point though.



I say that because the actual volume of sores is higher than normal.  They are smaller but there are more of them. Emmett doesn’t really tell us when something hurts him.  The only way we know is by watching his behavior.

This is one of the things that I hate about #Autism.  I hate that my son can’t tell me where it hurts.  Despite all the progress made in his expressive language skills, we still struggle with conversational things.  He still has a difficult time expressing himself. 

Are there times when you hate #Autism as well? I realize this is probably a loaded question but let me make this very clear. This blog is about honesty and speaking ones mind, without fear of judgement. 

I’m sharing a very personal feeling about #Autism, in the sense that it makes communication difficult at times.  I certainly don’t mean anything negative about my kids. I just get frustrated with how the symptoms can make difficult, the lives of the children I love more than anything in the world.

Read This  I'm feeling pretty positive about this

What do you hate most about #Autism’s impact on your child?



  • Michael says:

    I was going to say the constant stripping of the clothes, but obviously there are bigger worries. I have no doubt that my 4-year old son is absorbing knowledge as well as anyone his age. The kid’s as smart as his 4-year old twin. I think at this point, what I hate the most, is that unless he finds a way to better communicate – he’ll be left behind and have difficulty catching up.

  • whiterose says:

    I hate that future that is to become for my daughter with autism. I know I have many years to go, but not much has changed in the last 6 years, so i don’t expect much more to change. That is was what I hate about autism, the unknowing, the challenges she’ll face as a result. My daughter will never rattle on to me about her day, she won’t tell me when she’s hurt, she probably won’t even ever ask me to go to the prom. She’ll never be that typical daughter who’s worried about hair and makeup and boys. That’s what I hate: missing the things that a typical child does experience. I think what makes it so hard on me though is that we have another daughter 14 months old who is typical. They are so close in age, but so vastly different.

    • lostandtired says:

      @whiterose I completely understand, except mi en are boys, so no makeup etc. What I have learned on my 10+ years on this journey is that while some things are definitely going be missed. However, there will be so many things that will come your way that are just as magical. Hang in there.

  • Melisssssa says:

    Not being able to know when your child is sick or hurting is rough!  It’s definitely one thing I hate!  I sometimes give him some Tylenol just because I don’t know if a sore or rash is hurting him.

  • Silachan says:

    There’s a lot I hate about my own autism honestly. But at the end of the day, it’s what makes me a stronger person and what makes me ‘ME’. I would love to be rid of the devastating anxiety, the emotional roller coasters, and the inability to maintain friendships… Oh man I’d so love the last one to be gone that’s for sure.. But it’s just something to live with, and try to work on through therapy.
     
    I’d also be glad to get rid of some of the sensory issues for a day…Pretty please?
     
    (On a side note, if Emmett knows he’s in pain but can’t TELL you where, maybe he can SHOW you where? I have trouble telling someone that I’m hurting, but I can point or touch where it hurts on myself. Not on a picture of myself, because that’s harder. It’s connecting a sensation with location and then the word “hurt” that’s hard. When my shoulder hurt, I couldn’t explain where it hurt- but I could point to it or touch it and show you that way.)

  • AngieLuna says:

    I hate it when he realizes that someone “doesn’t like” him.  He doesn’t realize that they really aren’t interested in the topics that he talks about all the time.  He doesn’t know how to tell that they are done listening.  I try to tell him not to talk about these things all the time.  The worst is when he gets on a “what if” kick.  I can tell him to stop, that I need some quiet time, but the boys in his scout troop don’t know how to help him understand when to stop, so they just walk away, and he wants to quit because he thinks they don’t like him.  I can deal with everything else, but how do I teach these kids to understand autism?

  • JenniferWhynott says:

    I hate the meltdowns! I can deal with the anxiety, the social issues, the obsessing about certain topics and the collecting, but the meltdowns will be the thing that kill me. Since we do not have the money, I cannot afford to have all of my children assessed but my oldest is a sensory seeker which can result in some minor meltdowns but now that she is older and puberty has struck we have less beating up on others and more irrational hysterics. My diagnosed aspie does not have epic meltdowns and I am lucky that on the meltdown spectrum that they do not last for hours but they can be scary and hurtful and then the cooling off period any little thing can set her off and we are on the same roller coaster again. My lovely lulu is possible ADHD and general anxiety kiddo.  She is afraid of the dark, accidents, and fires. She NEVER sits still and focus, what is that. Then my little bubba has articulation issues and has started with the rare meltdowns although they are in short bursts. He loves to line things up and obsesses over things. His IEP meeting is next thursday so we’ll see where we go from there. If it were only one kiddo I could manage, but when all 4 of them have issues throughout the day, by the end of it, I am DONE!