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.

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

Take a second and answer the poll

As an Autism parent, do you think you've become so used to the high levels of stress in your daily life that you've normalized it or no longer realize it's there?

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

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JenniferWhynott
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JenniferWhynott

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… Read more »

AngieLuna
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AngieLuna

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… Read more »

Silachan
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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,… Read more »

Melisssssa
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Melisssssa

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.

lostandtired
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@Melisssssa I totally understand. Emmett is talking pretty well now but expressive language is still slow in coming.

darqueangel
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darqueangel

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.… Read more »

lostandtired
Guest

@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.

Michael
Guest

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.

lostandtired
Guest

@Michael that is a very realistic fear. My heart goes out to your family. I also understand because my Emmett didn’tbegin talking until is was well over the age of three .