Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

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May 18 2013

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What’s the toughest part of raising a child with #Autism?

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#Autism Discussions

by Lost and Tired

May 18, 2013

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There are so many things in life that can impact how hard or challenging it is to raise a child on the Autism Spectrum. 

For me personally, I think the fact that all three of my boys are autistic and have different and oftentimes conflicting needs, is among the toughest thing I face as a special needs parent.

When I say conflicting needs, I’m referring to things like sensory processing issues. 

Each of my three boys are individuals and unique in their own right. They each have challenges in the sensory arena. 

These challenges range from tactile, visual, auditory and olfactory to things as simply as taste. 

Because they are each different, there is no way to one stop shop when it comes to anything with them. What’s good for Gavin may drive Elliott crazy.  What’s good for Elliott might be detrimental to both Emmett and Gavin. 

I spend a large part of my day, simply chasing my rail and putting out fires. 

It would be great if I could make one dinner that everyone could eat, instead of making something that each person can tolerate and is willing to eat. 

That’s just one example but for me, it’s one of the biggest challenges I face on a daily basis.  It might not even seem like much but it’s exhausting and just one of the many challenges I face, each and every day.

When you stop for a second and think, what would you say is the most challenging thing that you face as a special needs parent?

I have many readers that don’t have any experience with a special needs child. What would you want them to know about you find the most challenging part of special needs parenting?


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Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

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About the author

Lost and Tired

I’m Rob Gorski and I started this blog in January 2010 as a means of sharing my family’s real life journey raising 3 boys on the #Autism Spectrum. It’s important for people to understand what Autism can really be like and the impact it has on the family. We aren’t a TV show and there are no actors. This is our struggle, our journey…and it’s all true. I am “Lost and Tired” and this is “My Reality #Autism”.

Permanent link to this article: http://lostandtired.com/2013/05/18/whats-the-toughest-part-of-raising-a-child-with-autism/

10 comments
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katerz1

Yeah, the food thing is the hardest thing for me, too. But I only have one kid! He's an Aspergarian with OCD and ODD, so you can imagine what mealtime is like. He's 15, 6 ft. tall, and basically living on ramen, mac n'cheese, eggs, and spaghetti. All of which I am cooking ALL. DAY. Did I mention I HATE cooking?! Hate it. Ahhhh, sweet irony. 🙂

I REALLY feel for you, dealing with THREE picky young'uns.

KearaIrene1 like.author.displayName 1 Like

Hello Lost and Tired,

I know exactly what you mean.  I have 2 children, my second child who is 2 years old has just been diagnosed as having moderate autism.  My son can not speak words and it's very difficult for me to be able to know exactly what his needs or wants are.  My son also do not each crunchy-textured foods.  To me, it gets frustrating because I to have to prepared different meals.  Since my son is not able to communicate and I would like to start potty training him, this is one of my biggest hurdles.  Any suggestion as to how I can do this would help.  Thanks in Advance!!! 

lostandtired
lostandtired moderator

@KearaIrene1 it's nice to have people that understand.  🙂 The potty training thing is probably different for everyone.  Some have it pretty easy while others don't.  There are tons of visual aides out there that might be able to help.  Put we sorta cheated.  We instituted a rewards system for using the potty.  Basically, he got a little DumDum suckered when he used the potty.  It worked for us.  

Latest blog post: @AkronChildrens made our Holter Monitor process quick and painless

Mjustlaurie

I would agree that never being able to fully "let go" is huge......I'm always trying to think 10 steps ahead of what my sons reactions could be.....for grocery shopping, a new outfit, what's on the table for dinner, a visit to grandma and grandpa's...wht could go wrong, how can I avert a crisis? And then there are the bigger, all-pervasive worries. Is his school team giving him the skills he will need? Is he learning? Is he getting the right medical care? Would we know if he, say, burst his appendix? Will he ever live even semi-independently? Will there be any supports for adults by the time he needs them? What happens if he is abused ? will he ever have a friend?

And then......Are we giving "enough" attention to his sister?

And the single biggest fear of all- which pervades every waking moment whether I am thinking about it or not....what will become of him when we die?

lostandtired
lostandtired moderator

@Mjustlaurie it so often feels like a lose lose situations, doesn't it.  It's like, no matter what you do, it's never actually enough.  I totally relate.  🙂 

Latest blog post: @AkronChildrens made our Holter Monitor process quick and painless

Mjustlaurie like.author.displayName 1 Like

That said, I wouldn't trade him for the world-he's an awesome, funny, smart kid....who just happens to be functionally nonverbal with autism! And all of its related challenges.

It's the constant constant WORRY that makes me nuts! And I like to think of myself as a pretty laid back person, but my fears for him turn me into a stark raving lunatic .... And I did NOT win the powerball like I planned so I guess I'll just continue to worry!

Tokemise like.author.displayName 1 Like

The most challenging thing for me as a special needs child's parent is that I can never, never, ever let my guard down.  Even when I know my daughter is asleep and "safe" in her bed and my husband and I are right here in the house with her.  Even when I sleep, I don't sleep.  She could get out of the house even though we have it locked up like a fortress, she could bolt  away from us while we are shopping or outside even though we have a harness and a system to make sure someone always has a hold of her.  We can't look away for even a moment, we must be hyper vigilante at all times.  So, never, never, ever being 100% sure she is safe and never being able to fully relax is my biggest challenge.

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