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(originally written & published on December 31, 2011)
“But Kyle was so good the last time you were here”
“But he’s so good in restaurants”
This is what we always here when we decline an invite to a family member or non-asd friend’s house or to a party that they are throwing at a restaurant / catering hall.
Now we aren’t normally ones to keep Kyle in and shelter him from the world. We like to bring him almost everywhere. I wrote all about this in a recent blog post that you can read here.
Sometimes we bring him to places and we know he will have a good time like his normal weekend routine (special needs music, swim, gymnastics).
Sometimes we bring him to places and we are pretty sure that he won’t have a good time like a NY Yankee game. Sometimes we do this to test his threshold and sometimes we do this because we are being selfish and we really want to go to a Yankee game…or… we want to feel like typical parents for one night bringing our son to the ball game.
Sometimes we bring him to places and it’s a roll of the dice. We’re not sure if he’ll love it or hate it or be indifferent… like going to the movies or going out to eat or going to see The Lion King on Broadway.
But when we decline an invitation to an event, a Baptism party at a restaurant or birthday party at a family members house it’s usually because my wife & I are exhausted and just have a gut feeling (probably from prior experience) that Kyle won’t have a good time and the wife and I will be running around playing goalie trying to keep him out of the boiler room or the kitchen or the ladies bathroom.
But whenever we politely decline we always hear “Why? But he was so good the last time you were here.” Or my favorite “but he’s so good in restaurants”
Somehow what they are not seeing, somehow are blind to is that we’ve brought a HUGE bag of toys/books, Ipad & a bag of snacks and that the wife and I are playing “goalie” the whole meal. We’ve got the routine down pat. All silverware, plates and condiments are removed from Kyle’s immediate seating area within seconds of us sitting down.
Yeah he was good, but there’s cheerios and popcorn all over the floor of a Chinese restaurant and I’m completely stressed out and taking home my entire meal in a doggie bag….
Yeah he was good, but there’s cheerios and popcorn all over the floor of a Chinese restaurant and I’m completely stressed out and taking home my entire meal in a doggie bag….
When we do go to a restaurant or somebody’s house for dinner the wife and I actually discuss our game plan in the car on the drive over.
ME “Ok you eat first and I’ll take the first shift with Kyle…”
WIFE “Well she’s making ham and he liked ham that one time. Maybe he’ll sit and eat for a little while….
ME (in a British accent) “Not bloody likely…”
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So on occasion we will decline and will usually get a guilt trip from one of our mother’s about it. “Everyone wants to see him. Just stay for a little while…”
But sometimes we will say back well “instead of having ___’s birthday cake at your house where Kyle runs around like a maniac, how about we host it at our house, bring everything & everybody here.”
Like most ASD kids he’s alot more comfortable and safe in his own environment. But rarely do people take us up on that. It just blows their minds…
Same thing goes for restaurants. Kyle has a few restaurants where he has always had good experiences…and some where he’s always had bad experiences. So when the family is planning a dinner out for so & so’s birthday (not like a formal party, but a big family dinner) and they say they’re having it at one of the “bad experience” restaurants we will politely say “can we make it at ___ restaurant instead and can we make it at 3pm instead of 4 cuz it’ll be better for Kyle.” But again they rarely change it… “but I told everyone that it’ll be at ___” So what? Call them back
Ok, so we get it. People, especially older people (like our parents) are set in their ways and you can’t change the plans on them within 72 hours of the event 🙂 so we then weigh our options. Sometimes we roll the dice and go… and other times we decline.
Tomorrow night my uncle is having a New Years Eve party at his house. It’s mostly in the basement which is very bright, very crowded, and very loud. The wife and Kyle declined. I said I would show up for an hour or two just to see my side of the family.
And all night I will hear… “Where’s Kyle? Why didn’t you bring him? He was so good the last time you were here….” Oh the guilt! NOT!!
There you go… a nice long rambling blog post about nothing for all my new Autism Daddy fans. Hope this doesn’t scare you all away… 🙂
THE END
PS I just want to add that we have a very supportive family on both sides… They are totally around and get Kyle…. And they truly mean well… They really want to see him and have us be included in all these events/ parties… They just maybe sometimes cant understand when we sometimes (maybe 20% of the time) say no…
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I read a lot of your articles and I don't really know how to put this in words. My daughter-in-law and son were new to the world of autism, their son had yet to be diagnosed, and he was just an infant. They said he had special needs because he required more time, more patience, just more.They would panic when he babbled loudly at a restaurant, cringe when taking him in a store, just over-react to everything (so I thought). I started watching the reaction of others when we were out. No one even noticed when he was being his big beautiful self! LOL I loved his character and personality, but they were so overwhelmed by him and the energy that was drained by taking care of him that they thought it was bothering everyone like it bothered them. It didn't – seriously – it bothers the parent more because you are so drained and exhausted that you respond quicker. You know what is coming next. We don't. I see my beautiful grandson being perfect just as I see him every time I am with him. My grandson is 7. I yelled at him once last year – never before and definitely never since – he was destroyed by it. He wasn't listening to me about homework because he had a friend who was ringing the doorbell, pounding on the door, and looking through windows to get my grandson to come out to play. It didn't matter that I had told this kid that we had to do homework. I was made at this other kid – not my grandson – but yelled at my grandson instead and his little heart was broken. So yes, I do see he has different needs, but it doesn't bother me. He has tantrums and temper fits (esp with his dad) and I watch trying not to interfere, but I am always ready to jump in and do whatever his parents ask of me. Both my grandchildren are perfect – one just has autism. ♥
Yep, I get this post completely! Especially the eating in shifts part. Then we get the "well-meaning" comments of "Why do you take him out?" Oh yeah, you're right! We shouldve just kept him in the cage and ate our dinner! Cuz everyone knows you don't take non-typpies in public! (sarcasm for those who don't recognize it) We also try the "Come to our house" invites, but it falls on deaf ears. The don't realize one of us is positioned on each end of him, blocking the exits, tunnel visioned, and in squat pose like we are quarterbacks waiting for the punt. Yeah, we are having a fantastic time at Grandma's surprise luau party! Anyway, thanks for your posts cuz they really hit home and make us feel less alone.
Well what other think of as a fun time for people like me an Kyle can be an event in hell I pick an choice now what I go to an my cousins an other family members understand me that I can stay for just so long then I'm done when litte if we went to someone home my parents would stay as long as they could but new from me when it was time to go or I could go chill in another room .what hard is everyone talking at once do it like your trying to adjust the radio station but you can't an you hear bunch at onetime mix that with everyone were perfumes an stuff mix with diff goods cooking most we proudly wount eat as we are supper picky an stuff .thought I do much better then when younger .it still hard an the next day I'm on megor sencorvey over load I will let my friends or family no when I need to leave . It tricky for us .an it not that we ding always want to be with u it just hard
I work with kids with special needs and have been asked by parents of the parents of the child who i work with to persuade them to bring their child because "won't it be good for them" or he was good the last time they won t listen to us but they will listen to you . I politely decline, because 1) as the support worker not my place to persuade them to do this 2) I get it , they already have so much going to try and run interference with their child all night well you put enough explanation in your post
This post is most of us with children on the spectrum……I have six children and sometimes I have to just leave the youngest with someone else just so the other children will have fun time with me.. I do occasionally expose my youngest to new experiences but 50% of the time I'm too stressed to enjoy myself so I know she's not either….. life with a child with asd isn't a walk in the park and most people don't understand the difficulties we face daily and the anxiety when new places are introduced to our child……
I am just working on a blog post about this kind of thing now. My 22 year old son recently moved to a new group home, and my friends have all been asking how it is going — and I want to tell them "It's great, perfect" after the long and difficult search to find this place. But I know if I tell them so, the next time they ask I may have a completely different answer, because life with our kids is always up and down. And I can't bear the disappointment and confusion on their faces when they ask "but I thought he was doing so well…?" It's simply a fact that others who are not living this life, even when they sincerely want to understand, simply can't. I appreciate the honesty I find in your blog, Autism Daddy. It does help to know we aren't alone.
I have a five year old that has never met her father. I do everything alone and never realized how many other parents know what i'm going through. I'm tired. My life is all about autism because anything else is too exhausting. Thank you for validating my guilty mindset. I stay a bit annoyed with family because everyone complains about one another and takes everyone for granted. Walk two steps in my shoes and then I will have no problem listening to you complain, It's called perspective. I know how terrible I sound but if you knew my family…….. SMH!
We know just what you you mean. We went to a dinner yesterday at my mothers and our son was really out of his element with all those other kids running to and fro having fun doing things he did not understand. And as far as getting him to eat he had only one thing on his mind and was get me out of here. when it came time to hunt eggs he went out and laid down on the ground and wined and cried because he was ready to leave and get out of there. we are learning to say no to a lot of invites because we know that our son is not going to enjoy himself. Anyone who thinks it is easy planning things for a child with severe Autism is easy has never tried it. You never know if they are going to like what you plan or how long they will tolerate it before having a complete melt down. Love your blogs so keep them coming.
We do the same thing, sometimes it's good and other times it's a disaster… We always have an escape plan and sometimes we take 2 cars just in case one of us needs to leave…even when we have events at our house my daughter does not do well until everyone is there and she can relax, but when they arrive she has anxiety…so it takes her a while to get comfortable and enjoy the company…missy
Hit the nail right on the head. To boot, we alternate staying up with him when he wakes up at 02:30, even with Melatonin and a 10:00pm bed-time. Sometimes yes, sometimes no but I tell ya, it REALLY makes those "sleep through the night" nights really special!
You've described our life exactly, down to who has wrangling duty! We to have supportive families and friends, who still somehow, don't get it and can't budge in their plans.
We can relate to that a lot. Our little man is 2 and has higher functioning autism but it is so difficult to attempt eat at a restraunt full if distractions and overstimulus we tend to have to have one of us eat then the other like you and your wife. As for family get togethers he tends to play a little bit once comfortable with his surroundings but is so overstimmed that he does not eat or drink much of anything the whole time. Which for a child who is small for his age already is kinda dangerous.
I SAY WE ALL MOVE TO THE SAME TOWN AND TAKE IT OVER! LOL!! JUST SAY WHERE AD?!
Everything that is being said in these posts is very accurate.
I just want to say one thing though. I am a teacher of children with Autism. I have been for 17 years, since I was 21 years old. I know no different and I don't imagine myself ever doing anything else.
So I do understand the issues that everyone else is talking about. However, the common thread coming through this post is "Other people don't understand." Of course they don't. Because they do not live through your experiences. Everybody has their own issues in life, their own agenda and their own wants. You know, because you live it. But they do not see what you go through. And honestly, they don't want to. That is cruel but that is the way it is. Before your lives were touched by autism, did you actually care how it affected other peoples' families? Honestly, your answer would be no. So the people you are complaining about… you were once them!
For myself and professionals like me, it is a choice. We do not experience 24 hours and the ongoing draining issues, but we see a glimpse. Your role in life is not what you expected it to be. And unfortunately, other people with their own agendas and "needs" will not see everything that you have to do and the choices you have to make on a daily basis. Hard as it is, you may have to sometimes see from their perspective. All they want to do is have you around and include you. That is their agenda, it comes from a good place. They feel your inability to meet their needs as rejection of them.
But stop feeling the guilt for it. That is the main lesson.
Love the honesty of this blog and from a dad's perspective! My husband is a staff pastor at a church of about 1200 people. We get invited to EVERYTHING and are constantly saying no. Our 33 year old son Jon, has Down syndrome and autism. doesn't like crowds and chaos (unless he's creating it) and really doesn't even want to go the places with us 99% of the time. People are always asking, "Why don't you just bring him?" I can't help but wonder if they realize there's a reason he's never even at church with us. Sometimes I'm tired of explaining it again. so I just smile and say. "I'll tell you about that sometime but thank you for the invite." My husband and I like to say that folks have to be Jon-a-tized to get it. I know you all understand what that means. I wrote about it here: http://aplacecalledspecial.com/2013/11/16/jon-a-tized/
Thanks for this awesome blog, Kyle's dad! 🙂
Well said. My family is always saying "no Wonder you are so skinny" but they just go right back to their visiting and my husband and I continue playing goalie and taking shifts trying to eat while the still has some warmth to it. It can be so exhausting. Luckily my parents completely understand and help out even have their house safe for my kids so we can actually sit and enjoy ourselves.
We never declined events as long as one of my cousins didn't bring his dog to the house, but maybe that's how mild I am
Thanks. I always enjoy reading your posts – they are always humorous and intelligent.I am a china tour lover,You can learn more: China vacation packages | China city tours | China Travel Agency
How true! We also decline because our son has food allergies and is on GFCF diet as well! We can't even host a party as he is so..so.. fond of eating and wants to eat everything…..and other people, I'm sure, would never ever like a GFCF and allergy diet party!!!
I can SOOOOO relate. Thanks for saying it, I am going to share on FB . . .
thank you… I get this all the time… I have 2 with autism… and because they are teenagers I also get…"if you don't make them go, they will never learn" or "if you don't invest in the family, then don't expect them to invest in your kids"… I use to get hurt or felt guilty, but now I just say… why should I force them, forcing them won't make them learn but it will make them have a meltdown, so no thanks… and as to no one will invest in me or my kids… all I say, is really, that's all it takes, well hell, i should have started this earlier… LOL… of course no one thinks it's funny, but since I have changed our idea of what we celebrate and who with, my kids have enjoyed events more often, and frankly… I am happier too…
I love you. Our son is higher functioning than yours but shit with family is my biggest beef. I also think the credit you give your wife is SEXXX-XXXAY!!! ;D Rachel
I have family members that understand and then those who don't. Either way I don't fall into the guilt trips. I have an uncle who flew up from California (to Oregon) who I haven't seen in 13 years. He was completely butt hurt the whole visit because my mom and grandma asked him to drive them to see me which is an hour and a half away. I understand, he came to Oregon and normally it would be polite for me to travel to him. But I have an autistic daughter and a 16 month old son. Driving an hour an a half for a three hour visit just to drive another hour and a half is just a miserable experience for everyone involved. He's in his 50's and never had kids let alone special needs kids. The world will never adapt for my family so its up to me to make sure I can make it reasonably comfortable for us even if that means pissing some people off.
This is so true !! People don't realize how much effort it takes to go anywhere for a long period of time, (more than 2 hours). Drawling stuff, toys, medicine,extra clothes, something for him to drink and eat, just incase he doesn't like what's there. A tray table to drawl on , folding chair, just incase the chairs where we go are too flimsy, my rock n roll son is hard on furniture ! AND seriously, do you get to socialize and have a good time ?? NO, you are constantly checking on him,chasing him, running him to the bathroom, and for me , trying to find someone with a knife to sharpen a pencil !! I drive a small gas gussling SUV, it's me and Josh and sometimes his older brother Sam. You need to buy a smaller more practical car, how can you afford gas ?? etc. Did you see everything I just pulled out of it ?? I travel like I'm on vacay everytime I leave my house ! And Josh has to have "his space" nothing but him and "his" choice of things on the same seat with him. He was so good last time ! Well last time was in the AM, which is a good time of day for him, late afternoon and evening is horrible, the phrase "Satans Spawn" comes to mind and I can control that in my home, or at least go to a different room for a little while ! We don't do amusement parks, anything crowded or too loud, Some company picnics are do-able because you can sit away from others and not be overwhelmed. If I know he won't like it, and I know it's too much I immediately say No, I'm sorry we can't do that, can't you get a sitter ? You need to get out more, you don't have a life ! This is my son, this is my life, it doesn't include "ME Time", and I don't dress up for it, but it's mine and I make the most of it !! 🙂
AMEN!! It's the same with us. I feel as though I repeat myself 100 times a month when people ask us to go/do something. Family and friends just don't get it. However, we do have a babysitter who comes over once a month for 5 hrs on a Friday night. I feel lucky to have her. She has been a GOD send.
You took the words right out of our mouths! I only wish they would take a turn as Goalie so they can see how "but he did so good last time at the restaurant" really went down. Our son is amazing, but those moments mean we don't eat together, hot food, or socialize ourselves. Thank you for such a wonderful blog post that captures our point of view.
Sharri (Autism & Fragile X mommy)
I can soooo relate to this post. Thanks for sharing and thanks for keeping things real here. 🙂
–David's mom
I have a scout unit full of autism spectrum kids. I have to fight with outsiders about how we do things all the time. I have a daughter who is Asperger's – yeah I don't have all your issues.. she has her own unique issues. She gets mad and sulks when she's not the center of everything… she has 3 younger siblings and she's 21. My 11 year old is more capable of being responsible without being watched with things she doesn't like or want to do. Lately we have been on the coming off the holidays excitement and back into routine. sigh- 21 is harder than 8. The bag of toys and cherioos doesn't work anymore. I have to let her play with my nook to get her to behave. 🙁
I loved this post. Kudos to all parents who take their ASD child out for "typical" family activities. I have been with my son and his wife (along with their 5 year old son who is ASD and their 2 1/2 year old daughter). For the most part J does extremely well in restaurants (family friendly ones) and at the movies. You parents have to have some kind of extra sense because you always seem to know when the meltdown is coming and rush to dampen it if at all possible. Kudos to all of you. My son, his wife, my grandson (J) and granddaughter are my heroes.
THAT'S what we're missing…the GAME PLAN discussion. Although it usually involves deciding who takes which child. And actually I'll just not go places unless my husband is off too because we also have a baby. Ever try wrangling a 9 month old and a 5 year old having a meltdown out of anywhere? It ain't pretty!
That is our situation also, It always shocks me how inflexible people can be. My other 2 children ages 10 and 8, who also have some special needs, are better at helping care for our daughter with autism than most of the adults in our life. No one seems to understand the stress of keeping her safe and happy in public.
I love this because its the same for us also and trying to get people like family and friends to understand is like banging your head against the wall and wish family would educate themselves more on this so you dont have to explain yourself 500 different times to them I love my mom but she lives in a one bedroom 2nd floor apartment very small and for my son it excuse the language HELL and cant really bring alot of things for him to do because there is not enough room and she has no yard and he is also 10yrs old so i bring snacks drinks and let him pick 3 or his toys and we can only stay maybe and hour at the most before he starts to complain and same with restaurants we go to the Chinese restaurants with buffet because than we can just go get the food no waiting and eat than leave or anyplace that has a buffet is best for him I always plan thing ahead of time so we know the game plan! Tonya R
My family don't even invite us anymore and when any do visit it's no longer then 30 mins,when we use to get invites I ask if they could change a time was told the world can't and won't rotate around his needs I didn't ask the world I ask family.
Being new here, I so 'get it' and its good to read the blogs/comments, I don't feel so alone!!
IlovHappy New Year to you and your familie your blog your family is loikes ours down to a t when its events like this.Like ive said before we have two on the spectrum our eldest is 18 in feb and im gearing myself up on family asking what were goin g to do for his 18 dreading it.
We also decline most family events. The crowds can be over stimulating to our son<3 We have done small birthday parties for him (only acceptable because he loves birthday cake). My husband and I love your blog it makes us feel like we are not alone in this other families are going through it also.
We do the same thing..we have it down pat and the reminders in the car right before we get to our destination. Rings true right from the beginning.
I Love your posts because they fit our lifestyle to a "T". Our son is now 18 and My Hubby and I decided long ago that it was not worth the stress to go to most every place ….We were constantly on the run to keep Travis from getting into everything and therefore None of us could enjoy ourselves. The best one I had heard yet was…When Travis was younger my Dad insisted I bring him to the family reunion which I knew would be a disaster He says I'll help with him Yeah Right he was off talking it up and I was running all over the place wore out! Needless to say that never happened again~! I also like how some people who have never met Travis will say OH I know about Autism I teach at a school & then when they meet him they are like Wow!!! So I just overlook them! I have not met many people who have seen the severity of my boy's Autism. Thanks for posting this it let's me know were not totally alone!