Friday, April 22, 2011

Spectrum Saturdays: 10 Things I Wish People Knew About Raising A Kid With Autism

\\There have been some amazing lists lately about what an Autistic child wishes people knew. They address so many misunderstandings people have about how to communicate with, or understand an Autistic child.

But there are things I wish people knew about parenting an Autistic kid, and Autism in general. So, here's my list:
  1. Autism is not your worst nightmare.  I'm sure those who say it mean well, (even if they're being outrageously thoughtless) but I wish they wouldn't tell me that.  First of all it makes me feel like they pity me or my kids, and second of all it misses something really important.  My Autistic kids?  They're here, with me.  They're alive.  Trust me, planning a funeral for your child, that's your worst nightmare.  Autism isn't anywhere close.
  2. My son isn't a problem.  Ciaran is 5 years old, and communication is still difficult for him.  He sees and hears so much, that it's hard for him to figure out which sights and sounds deserve his attention.  It's even harder for him to communicate what he's experiencing.  That's not a behavioral issue, nor a sign of my parenting ability.
  3. My son isn't stupid.  Most people realize that Reagan is smart.  He's 13 and communicates on a fairly advanced level as many Aspies do.  But Ciaran is still small.  Since his communication isn't as good as other children his age, it's easy to label him as not being very smart.  Nothing could be further from the truth.
  4. There are a million and one ways out there to treat Autism.  While I'm always on the lookout for tools that will make their lives easier, I have no desire to put them or myself through hell trying to fix something that I don't think is broken.  
  5. I don't speak for all parents with Autism.  Not remotely. Many of them do want to fix or cure their kids.  While my feelings are different, I have no desire to judge them or their experiences.  Life's tough enough.  I can only speak for myself, and do my best to speak for my kids.
  6. I wish people talked to their kids about Autism and how to work with kids who have it.  We spend so much time teaching tolerance and diversity, and that's awesome!  But how many parents do you know who've really explained to their kids what Autism is?  We have so many children affected by this disorder, it's a virtual guarantee that your kids either already know one, or will.  If they understand it, they'll be more patient with them.  That means so much to the kids and the families living with Autism.
  7. I think we're good with the Autism Awareness.  I think people understand that it's out there and affecting so many children and families. Now I want to move on to Autism Acceptance and understanding.  Just knowing what it is doesn't help people to know what it looks like, and how to be inclusive of people with Autism.
  8. Socially inappropriate behavior on the part of my kid is a time for teaching.  Telling my child, "When it's Amy's turn we have to keep our hands off the toy" is so much more helpful than saying "Stop it.",  "No.", or "Time Out!".  Because he's not being bad, he just doesn't get the social nicety yet.  So I have to work with the understanding that he did it because he doesn't know better.  Trust me, when he's just choosing to do something he knows he's not allowed to do, I'll be the first to put a stop to it.  Although, again, because of his Autism, the way I handle that may not look the same as it would with a Neurotypical child. But that's okay. I know what I'm doing.
  9. I have two sons who have Autsim.  While this doesn't solely define who they are, it does affect almost every aspect of their personality.  So, if I use the word Aspie, or say I have two sons who are Autistic, please don't think that I, of all people, don't understand who they are.  I do, quite well.  I both love and accept all of who they are.
  10. While I don't need pity, I do often need support and understanding.  Raising kids is hard.  Raising kids with Autism has it's own set of unique challenges.  I often feel like I'm not doing enough, or not doing it right.  I need encouragement.  Especially on bad days.  
I'm grateful every single day that each of my kids is here with me.  And I hope one day that I've done well enough that they have all the tools they need to go out into the world and make their own way.  In that way, I'm just like every other mom. 

Authors note: This Spectrum Saturday post was brought to you a whole day early because the school system gave my kids Friday off, which confused me.  So, happy Spectrum Saturday/Friday!

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