Friday, September 30, 2011

Guest Post: Top 10 Things you can do for a Parent of a Child with Autism

We have a guest blogger today! My friend, Cari from Bubble Gum on My Shoe, has been a huge source of inspiration to me this week. You may remember her from the post, “The Gum in My Purse.” She was the very first guest blogger here and I’m so happy she was willing to write another post for me to share with you.
Let me just tell you that she has been very insistent that I become a Twit…terer. So, I took the plunge. If you would like to follow me on Twitter, I can be found at @CaffeineAutiMom. If I end up becoming some lunatic that tweets 9 billion times a day, blame Cari. It’s all her fault. (Love ya, girl!)

She also posted a vlog on her blog (that sounds ridiculous, doesn’t it?) that proved to me once and for all that it was indeed possible to do a video, edit it, and not look completely hideous. Her vlog about crows is hilarious and you should definitely check it out! Anyway, I had been working on a project this week that was brand new territory for me. I have never made a video of myself much less edited it, and while it was fun to figure out how to work the video software, getting in front of the camera was terrifying. I’m much more comfortable taking the pictures rather than being the picture. The thought of posting something online for the whole universe to see (potentially..) is enough to make my stomach churn. Once it’s posted, there’s no going back. But, Cari gave me the last little bit of courage I needed to finish my project. I’ll tell you all about it next week, so stay tuned.

Without further rambling, I would love to turn it over to Cari. She’s got a great Top 10 list to share. I know you’ll enjoy it!      

Let me preface my list by saying parenting is hard stuff period!  Parenting special needs or typically developing, it is always a challenge.  I in no way by writing this post am saying my job as a parent is harder than yours, just different; and I consider myself as blessed and lucky as you.  As parents, we should all be encouraging each other always.  KEEP READING!  I’m not going to say, bring a meal, clean my house or write me a check…although, all those things would be adequate.
The Top 10 Things you can do for a Parent of a Child with Autism
1.     Listen.  Listening is not giving me a rebuttal to my problem.  Let me vent, let me get all my frustration out; let me just unload.   Trust me this will decrease the rant-ish writings and Mommy meltdowns by 64%. 
 
2.     Don’t give up on me.  We’re friends, and it may seem like I never return your phone calls, am always busy and can’t join you for dinner, or a movie, or a playdate, or coffee.  Understand that there is nothing I would love to do more, but am exhausted or busy.  Every moment of my day is filled with therapies, research, meetings, paperwork, and the full-time job of managing my child’s care.  Don’t give up on me, keep calling, it’s nice to know you’re there and you still care.

3.     Give me a hug.  Really, we should just be hugging everyone.  I’m a hugger.  Hugs are good for the soul.  They release tension and stress, and they make you smile.  They are highly under-rated.  And these are free, yeah, that’s right!  Free!  Give me a hug!  Chances are I’ll need one.

4.     Don’t assume just because your sister’s brother-in-law’s cousin’s child has Autism, that their child and mine are the same, just because they share the name of a disorder.  The Autism Spectrum is justly named, every child is different.  Not every therapy works for every child.  Not every diet, supplement, school, medication, etc. works for every child.  We do what’s right for our child and base decisions on results for our kid.

5.     PUUUHHHLEASE wipe the pitiful-almost-bursting-into-tears-feeling-sorry-for-me look off your face.  I don’t want your pity, I want your support.  When I blog/speak about Autism, don’t tell me you’re sorry.  I’m not sorry.  Ever notice Moms of special needs kids are hilarious?  Yeah, that’s right, join us won’t you?  You didn’t get an invite to my pity party, because been there done that, moving on.  If this means making fun of my disheveled ponytail and no shower in going on three days self, I’m okay with it, if only just to get the ball rolling.   Laughter gets me through the day.
 
6.     Have my back.  Show your support by walking an Autism walk with me, donate to a non-profit {Angela’s would be dandy}, spreading the word about Autism and how it is epidemic and affects 1/110 children, fight with me for insurance reform, coverage, and accountability, or come to a therapy session with me and see why it is so important.
 
7.     Do not utter these words….”Rainman”, don’t go there, ever.  Also, “I don’t know how you do it”, don’t say that okay?  We do.  And if you were in my shoes, you’d do the exact same thing.

8.     Don’t take it personally if I skip your play dates more often than not.  This is anything but relaxing for me and my child.  Autism is also a social disorder, my kid isn’t going to pick up on the social cues, play appropriately, have similar language skills, or maybe even be okay with the other kids in his space.  Playdates are like going to work for free.  Sometimes necessary, but far from enjoyable. 
 
9.     In the Autism world, 80% of marriages end in divorce.  Let me and the hubs have a night out to reconnect, and blink the glazed look out of our eyes.  Every parent needs some time to reclaim their pre-parent self.  After all, we’re all just one meltdown away from the Looney bin.  {I also think this “rate” might be a myth, I’m divorced, I have a child with Autism, and Autism has nothing to do with why I’m divorced.}
 
10.  Lastly, just love my child, for everything he is, and everything he isn’t.

11.   BONUS!!  I am looking for someone to infiltrate the inner sanctum of the uppity-ups at the insurance company.  We will need someone who can successfully sway uppity-ups on policy as well as revamp the underwriting/coding department.  You will know where to find them as their offices are located one tier below God himself.  {No application necessary, the crazier, the better.}

13 comments:

Effie said...

Very nice post! I concur and joined your site.

Nessa said...

Love this list and Carri's blog. Glad to be reading yours. All these things are perfect for a parent of any child... great lessons.

Crystal said...

Good stuff, great pot, as always!

Christina Majaski said...

Great post for informing those of us who don't know. I agree that much of it applies to and is helpful for all parents in general.

Beard said...

I'm usually the idiot that says/does the wrong things when trying to be helpful to special needs parents.

Helpful list here, I'll keep this stuff in mind, thanks Cari!

Cari said...

Thanks for your comments everyone! Take it with a grain of salt, because I am NO expert! If all you do is listen, that's good enough.

And yes, all could apply to every parent!

Thanks for let me crash Angela!! And welcome to Twitter!

Kara said...

Well said, my friend. I agree, our jobs aren't necessarily harder, just different and it's lovely to connect with a NT parent who recognizes it and laughs right along with us...or mostly at us. Cause next to a sympathetic ear, nothing is better therapy than a good belly laugh. And maybe some tequila.

Cam - Bibs and Baubles said...

very helpful list. i feel like for those of us not in your shoes it's hard to know what to say and so we sometimes say the wrong thing. i don't think i've done that... yet. you've certainly given me some things to think about.

Caffeinated Autism Mom said...

LOVE the comments, everyone! Thanks for taking a moment to share your thoughts. You guys helped make Cari's guest post one of the top posts of all time here at Caffeinated Autism Mom! Wow! Wait...should I be nervous about that? ;-) Thanks again to the fabulous Cari for sharing her perspective with us.

Luna said...

Oh god yes. Especially the pitying looks. The "I'm so sorry!" drives me crazy. Even the middle guy's BI keeps saying, "I don't know how you do it!" Ugh.

I'm gonna need some snappy answers. I think my reply to "I'm so sorry" is to glare and say, "So it's your fault?!" and then watch them sputter until I crack up laughing.

xlpharmacy said...

I think that compression is one of the most needed. It helps a lot. Also support is another one that it can help a lot.

Sonata said...

I think my biggest pet–peeve is "OMG. How do you do it!" Like there is another acceptible option or something. We figure out how to do it because there isnt another choice. We get creative because that's what our kids need. It is what it is and we do what we do. That being said my favorite response to this question. "Pretty much the same way you do things. You know; opposable thumbs; language skills; highed functioning thought processes or did you sleep through that evolution lesson?"

Yeah I'm sarcastic....but i thought it was funny.

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