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Tuesday, June 3, 2014

10 Things to do when you're having an Autism Family over

I'm often excited when I see how many folks follow this blog that don't have autism directly in their lives.  (aka Waking them up at 3:30 AM to confirm that they will have art class that day at school) I think it's kind of awesome that someone that really doesn't have to know more wants to learn all about it.  Kind of restores my faith in humanity that you would rather learn about autism and autism parenting from the folks that do as opposed to what celebrity du jour says about it in this week's People magazine.  So to you, I tip my cap.  If I wore a cap. Which I don't because it would give me hat hair and I'm from Jersey and our hair is very important.

Anyway, this post is for all you kind people.  The ones that decide to perform the ultimate act of faith and trust and invite us over to your homes for a visit.  Even though you have heard more than your fair share of stories that might scare you, you still like to have us over for a BBQ or a party.  You're good eggs.  We like you best.  No really, we do.  We talk about you all the time.  :-)

So here's a few tips that can help you help us have a successful outing.  I know you didn't ask but since you are so swell I bet you'll read this anyway because you want to be the hostess with the mostest this summer season.

1) Give a head's up to the people living in your home that autism and it's entourage is coming over.  I'm not saying share it with everyone crossing your threshold BUT the immediate folks that live there would be nice.  (i.e. Spouse, kids, Grandma etc) You might want to prep your kids that yes, another kid is coming over but they may not want to play the same things as you do or with you at all.  Tell Grandma that the kid in question isn't being rude when they don't respond to questions about what grade they are in.  Let your spouse know to keep those drinks topped off for that tired set of parents.

2) Secure the parameter! The kid could be a runner.  You might think at first "Why are these parents up this kid's bum so much?" Well, there's a reason for it.  I'm not asking you to build a fence or install ten new locks but if you have a fence, make sure it's shut.  Inside event? Lock the back door.  You don't need it open.  Or close doors on any rooms you don't want my kid in because trust me, he will go in them.  He's like Goldilocks's.  He likes to try out every one's bed.  Feel no need to make yours if we come over.  If the door is open he will be diving under the covers in a heartbeat when he needs a sensory break.  We just saved you a chore! You're welcome.

3) Want to be super extra awesome and earn all sorts of good karma? Take over watching our kid so we can eat.  Often parents tag team each other at these things but it is nice to share a meal with my husband at the same time he does.  So tell us you got my kiddo, I will love you for life!  You can even outsource this job to an older teenager.  My sister in law has asked my nephew to keep tabs on the kiddo in exchange for extra video gaming/screen time.  It's a currency that is worth more than cash in her house.  We get a nice visit with you, your kids later can create a Minecraft masterpiece.  Doesn't cost you a dime. Everyone wins!

4) Realize we might show up with our own food.  This is not a snub at your cooking, we just know our kids can put your picky eaters to shame.  You might be thinking "No, I got the hot dogs or the gluten free nuggets for that kid." but sometimes brands make ALL the difference.  My brother in law used to assign us the job of bringing something to his parties that I knew my kid would eat.  He knew it would be easier for us.

5) Oh my god! You're like so excited to tell us about this book you heard about or this story online you saw about autism.  Stop! Ask yourself, is this person online?  If they are, yes, they already have heard about the book "The Reason I Jump" or seen the picture of the kid that can draw all cityscape from memory.   The YouTube clip of Carly, the girl that can't talk but can communicate by using a computer? Yep, seen it.  No need to whip out your iPhone to show me.  It's not that we don't appreciate your enthusiasm about this.  We do think it's cool you're in the know.  Here's the difference.  If the reason you bring it up is because you want to talk about it in more detail other than "Oh you got to see this or Have you heard about?" then I am all in.  But if it stops at, "Look, this kid draws from memory! I bet your kid can too!', my eyes are going to glaze over.  Sorry. Remember not all kids are the same.  My kid can barely sign his name his fine motor skills are so bad.  Telling me about this autistic artist really isn't as uplifting for me as you might think. So again, viral stories du jour, skip it.  We already saw it in the newsletter. 

6) We don't know all the autistic people in the world.  Please don't tell me that your mailman's girlfriend's daughter has a kid on the spectrum.  I have not seen them at the secret autism meetings.

7) We live and breath autism 24/7.  Trust in the fact that we would love to talk about something else other than that topic.  It's cool you're all down with us on all things Autism.  There are just many times I'd rather talk about this season's True Tori on Lifetime. (She's a Spelling.  She knows how to make good TV. I know this has to be so fake, fake, fake!! Yet, I still watch)

8) Realize our visits might be short.  Or we might have to leave suddenly.  Or we might need to take our kid into a quieter room for a bit.  It's nothing against your party, our kid is just overwhelmed and needs a break.  Being cool with that makes us relax.  When we are calm, our kids will be too.  So point our your DVD collection to us.  Our kid just might need some Pixar therapy for a bit and then be good to go for dessert.

9) Woohoo! Successful visit.  You decide that we are cool and want to do it again.  You call us up on a whim and invite us over for pizza or something because you're wild and crazy and spontaneous.  Then we do something awful like saying "No" You must not take this personally.  Maybe we have been up since 4AM.  Maybe our kid has been having meltdowns all day and we are spent.  Maybe we don't even have on our pants.  We just know when it's a good day to throw caution and the routine to the wind and when to just stick to what works.  Maybe what is working that day is non stop verbal scripting from Thomas the Tank Engine and chilling in a body sock under four couch cushions.  Sometimes we just got to roll with it.  I might send over my husband to you so he can get a break or I might just put on a bra and happily escape Living La Vida Autism for a while.

10) We don't expect your kids to play with our kids.  I don't anyway BUT (and you knew that was coming) I do hope your kids will be nice to my kid.  That's all I ask.  A little kindness goes a long way.  Remember, you're the swell eggs we talk about at the secret autism meetings.  :-)

Bonus tip: A plate of fries will always go over well.  :-)

28 comments:

  1. Love this, you've NO idea how many "friends" I lost when I had my youngest because they just couldn't understand the need to prepare, cancel, cut short or reduce the number of attendees to prevent a terrified over stimulated little man. And I am forever grateful for the friends I've made that are relaxed, understanding and kind. Well Said momma fry!!

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    1. What pratts!!!!! ������
      Thumbs up for the latter tho������

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  2. This is awesome! My NT daughter made a new friend recently. The new friend's mom invited us over for a playdate. In the course of the scheduling conversation I said, "My son has behavioral therapy until 3, but we could come over at 3:30." Once we had settled on the logistics, the mom said to me, "You mentioned your son's therapy. Is there anything I can do to make your son feel comfortable in our home?" It was the greatest question I've ever been asked!

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  3. Love ....love....love this post!!!!!

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  4. I'm one of "those" people you're talking about, and everything here is a great reminder. I'm going into Special Ed for my master's degree, and convinced my hubby that Parenthood would be a good show to watch (we love it!) and I'm helping him realize some of the ways that people on the spectrum think a bit differently. It's definitely helping us grow together in my planned profession.

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  5. my grandson has just been diagnosed with Aspewrgers and this is so refreshing to read, print out and share with friends and family members

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  7. I love the way you so concisely write about my experiences! Thanks for sharing :)

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  8. Thank you for sharing your personal wisdom. It helps those of us who take care of your child when you send them to school.

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  9. This applies to Aspies and Auties of any age. My 22 year old friend is still a picky eater, needs downtime, sometimes doesn't want to interact, sometimes talks so much and won't stop talking...they don't grow out of it. They learn to cope, to mask it, to adapt but autism is for life. This article could similarly be written by a wife about an Asperger's husband.

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    1. So true Amy, and I know just whom to share this with after reading your comment ;)

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    2. Amy, this could go for any "ABILITY" at any age, I have a heart condition and now liver issues, and I have an awesome nephew with Glut1 (his family just started attending our secret meetings which the world doesn't understand that they classify us as different spectrum disorders, disease, illness, etc. but we are all together at these meetings ... wink wink)! I think the issue is not the person who has the needs but the judgement of those who don't get it, we don't need to change our behavior but this is a great way to open dialogue to those who might not understand! I'm older, and it makes it so uncomfortable when I'm with friends at the mall and panting and they just are like "What is wrong with you" because I want to scream, "I have one working ventricle and a liver which is deteriorating so what is your issue with me taking a break?" I've invented "purse break" with my nephew, this is actually a way for us both to rest but he thinks I need it ... even if it's both I think it's helpful to have "permission" to rest and not feel weird even if he's young ... I invented it when his awesome mommy was rushing to swim class and I was tired so I was like can we take a break of course she said yes, so I dropped my purse and said "purse break" ... the first time I knew my nephew got it is when I was babysitting and he just seemed grouchy which is not his sweet personality at all ... so I dropped my purse and plopped on the ground and said "DUDE (used his name but won't here) Auntie is tired let's take a purse break" and he just climbed on my lap and I said "Thanks for sitting with me while tired" he kinda smiled like it was finally freeing him to sit down, not sure his mom and dad enjoyed him running around screaming "PURSE BREAK" all day as he's learning a ton of new words but I know if I can help him "take a break" without him knowing it's for him ... it can save him from the dreaded "I'm a built a bit differently so I might need stuff you don't understand and blah blah blah blah blah (now we get uncomfy) blah blah (oh they look like they have questions)" This way he's a kid, with a crazy Auntie who drops her purse and sits down for a cuddle :) GOD BLESS YOU ALL ... your children love you more than you know and maybe more than some can express!

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  10. Awesome read ! You hit this one out of the park, as usual ! :)

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  11. Great article! I have a child with Down Syndrome so I can definitely relate. I still ache from a company barbecue when the child of one of my employees declared, "Your kid is a mean little freak and I don't want to play with her."

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  12. Wow! I don't even realize that we all go through the same things. I feel like it's just me! Thanks for posting this it is so so so true!

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  13. This was an awesome article! I thank you for taking the time the time to write it and share it with us. If felt like you were reading my mind!

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  14. I totally agree with most all of this, but I have a friend with a child who is 4 and autistic and I have a special needs child who is not cognitively delayed (he's 6 and has CP). I love my friend, but when she comes over, she sit yells at her son instead of getting off her butt and getting him. He is running through my house, banging on my television set (with whatever object may be in his hand), pulling on my blinds, getting into cabinets and she just sits.....and yells. I don't even invite them over anymore and just meet her out because I practically have to baracade my son in his room to keep him safe. I want to say SOMETHING because her yelling seems to really upset him (and upsets me!), but it has made me cringe when she brings him over. :( I end up chasing him around and I don't know what to do to keep him from throwing toys into my television.

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    1. Good for you! You shouldn't have to deal with the effects after the child leaves--replacing blinds and TV's aren't cheap if the behavior escalated. A disability shouldn't be used as an excuse to dismiss bad behavior, and a good parent knows sitting and yelling isn't effective, or at least not for very long.

      I also agree with most of these, with the exception of #2. When having an indoor party: "Lock the back door. You don't need it open." Really? There are many reasons I may need a door open in MY house--even when having an indoor party (going to the grill on the deck, getting drinks from the extra refrigerator in the garage, looking out to check on kids playing in the yard, etc.). Yes I could open and close a door 100 times in an evening but that gets ridiculous. If you are watching your child in an appropriate manner you will be aware he is trying to escape. :-)

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    2. I don't mean to come across as inconsiderate in my response. You're making a valid point. Please realize why that open door is a potential problem. An easy example... 30 seconds isn't long to be distracted unexpectedly by something or someone on the part of a parent, especially as the number of people present increases. It's long enough that a kiddo can slip out unnoticed. A high percentage of autistic children wander for a variety of reasons. Impulsivity is their enemy. A percentage of them get lost, or worse, drown because they wandered near water. Once when about 8 people (5 adults) were at my house, I looked out my window to see my autistic grandson peering in at me. Thank God he hadn't gone elsewhere. Someone had forgotten to lock the patio door. We watch him like a hawk, but it can happen so easily. That's all the author was trying to say. We all appreciate the inconvenience this will cause, but strongly appreciate the hostess's effort to do it.

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  15. I find this a bit patronising. I have friends with autistic children. We all grt together all the time. We treat all the kids as individuals. We have them over because we r friends. We know our friends childrens needs as they know mine, because we r friends. Not because they autistic. Some interesting points. But if friends r reading articles its.prob because they r trying their best to understand. Although we never will fully u shouldnt belittle people for trying. Thanks

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  16. As an autistic picky eater, I bring my own food with me wherever I am. I'm sorry if you're offended if I turn down your beloved apple pie, but I cannot stand baked fruit.

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  17. Agree. A little patronizing, sorry. Overall a good read and informative:)

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  18. I'm a new Stepdad to the spectrum, had never been around it before but it's amazing how quickly you learn when you dive in. This list is so true. Thank you for your insight into these subjects.

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  19. I am considered NT but I'm on the fence of Team Quirky with many things. I get massive sensory overload at parties and when it comes to food, I usually duck into whatever space has no people to eat something quick, ten years ago at a gathering I would have eaten nothing. Loud noises and too many people talking at once push me to need some quiet space or alone time. If I wait too long then I have to leave and not go back. When I was a teen I would go find the young kids and sit with them and watch them, they tended to be quieter (and more fun) than the adults. If there were no kids at a gathering then I sought out the animals haha. I want to participate, but in my own way. I wish people understood more...so, Thank you for this.

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  20. this post is great. I have a friend that also has a special needs kid and she told my husband that it seems like you guys dont get out often.....that is an understatement.

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    1. I started blogging again myself and it talks about all the craziness at our house and stuff just like this. it is refreshing to know that I am not alone. thanks.

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