Wednesday, November 23, 2011

Why We Take Our Son w/ Severe Autism Out Into The World As Much As Possible


(originally written & published on November 23, 2011)


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An autism mom named Heather posted a question for ol' Autism Daddy earlier today after I wrote about a successful trip to the movies and a restaurant today with the King...


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She wrote...
"I notice you take your son out to eat.... Or in public at the very least. Now our sons are like night and day.... My son is verbal and his good moments are great but they don't happen much. In public he can't stand sounds, smells which result in screaming or wandering in the restaurant. How do you do it? We end up with others starring as he hits himself. I would love any suggestions...."
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Well for years the wife and I have always told people that Kyle is very malleable. He would go with the flow.  He was Mr Mellow Yellow. And he was very unlike your typical asd kid... loud noises, crowded places didn't bother him, changes in routine didn't bother him...And he was like that for many years. We could and did take him anywhere and everywhere.

Now lately he goes thru ok stretches and bad stretches... but the wife always says that she never wants to be a prisoner in her own house.   I would be more ok with that.  :-)


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So besides his normal weekend activities (music therapy,  special needs gymnastics, special needs swim lesson), my wife's always coming up with plans of things to do over the weekend.  Ways to fill as many awake hours out of the house as possible.  For the most part Kyle and my wife like being out more than being home.  If he wakes up at 6am on a Saturday and we have nowhere to be till noon, by 11:30am he's usually wrecking the joint / jumping out of his skin / making it clear that he wants to get the hell out.  So we do our best to get the king out early and often....shopping, movies, restaurants, playgrounds, family's houses, even an occasional NY Yankee game...

Even during this REALLY bad summer of 2011 when Kyle was CRAZY with multiple meltdowns, tantrums, kicking, etc, we did our best to still take him out into the world... And for the most part his meltdowns would happen at home or in the car, but usually when we got to our destination he was ok.

Don't get me wrong, he still acts up big time and we go EVERYWHERE with a backpack filled with snacks, books, mardi gras beads, iPad, a change of clothes, etc, etc, etc.  And everyone knows he's autistic, I mean he's eating Cheerios at the restaurant while putting beads in his mouth while attached to a service dog. I mean if that doesn't make you stand out then I don't know what does.  But I've said before that we've rarely, if ever, come across people who are out and out rude.   I mean, yes they stare, but you've got an 8 year old kid licking the window while attached to a dog... I would stare at that.... But I think because it's so obvious that Kyle is different / disabled from the minute you see him we don't get the rudeness that others get.  If we do, we are own little world and are oblivious to it...

And now, since September 2011, the king is going thru a real good stretch and we feel like we have to play the hot hand, try to do as many things as we can while he's in this happy place and see how he does.  My wife's been pushing the envelope a bit and taking him food shopping quite a bit lately and not putting him in the cart, but instead asking him to walk alongside / push the cart.  Today we did the movies and I was the one who suggested, let's roll the dice and go out to a late restaurant and see how he does...

I don't know if my wife feels this way, but when it comes to taking Kyle out into the world and when it comes to leaving Kyle with a sitter and me & the wife going out... I feel like we are racing against time...and time is not on our side.  Maybe that's a morbid way of thinking and maybe some of you parents of severe asd teenagers will tell me differently... but I feel that as Kyle gets older it's going to be more and more difficult to take him out into the world... and it's going to be more and more difficult for the wife and I to have those SELFISH date nights that I keep writing about.   I mean who's gonna watch a 22 year old Kyle so the wife and I can go to the Foo Fighters Farewell Tour 14 years from now...   :-)

So I feel let's try to cram in as many movies, restaurants, Yankee games with the king now... And the wife and I should cram in as many dates nights now cuz I expect the road to get bumpier ahead...

PLEASE TELL ME I'M WRONG!!!

I got a bit off topic there at the end, but I hope that helped answer your question Heather!  :-)

THE END

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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20?  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!

35 comments:

  1. I understand completely. Plus its so good for them to get out in world. Our boys act up in public and my oldest one can not tolerate public places for very long periods but we keep taking them hoping that one day maybe we can spend more then ten minutes in a grocery store. Also I have found going shopping at night when there is less people around helps too. Going to restaurants is pretty much out of the question with them so we sneak as many date nights as we can :)

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  2. I agree with you and your wife. I always take my son out and we are always on the go. Each time is better and better. I want my son to be able to enjoy life and know that there is so much more out there. My kid is here to stay. My son is high functioining but he is 5 and still have meltdowns in public. He is such a sensory seeker he wants to touch everything. This fall I have taken him to every fall festival in a 50 mile radius..sometimes we stay for 10 min or somtimes an hour or more. I am a single parent raising my son and I can't help but think about what it will be like when he is 22 as well...I want him and the world to get to know each other as much as possible. My son loves the movies too and now he is getting used to going into restaurants. Sometimes I forget how small our world once was and now I am so glad we can get out so much more. My little one is still sleeping which is a miracle...but I am sure once he wakes up he will want to go somewhere...even though it is Thanksgiving...

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  3. We try to get out and about a lot too. Right now he is a tiny six year old and still fits in a cart, and I can still easily carry him if need be. He still fits (and likes to ride) in my jogging stroller so I can take him with me on a jog or for longer sight-seeing trips. BUT what happens when he's bigger? He usually does pretty well in restaurants too, as long as certain conditions are met. (We too are always armed with a backpack of help.) I'm hoping that by the time he's too big to push/carry that he'll be better behaved in stores, etc. At this point he gets so geeked out by all of the sights, sounds, people, STUFF around him that he can barely contain himself. We're in our own race against time. :~)

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  4. My daughter is now 18 as a kid we took her every where holidays , days out & meals out kicking the crap out of us as we went but now she is older its harder she is stronger and more or less hates the out side world she is an adult now and no longer can make or bribe her to go so i see four walls most days , every day we still try but shall i say Epic fail most days

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  5. I would like to take my 4 yr old son out more.He's non-verbal and he does alot of vocal stim. He's vocal stims sound like vowels and get louder and louder as the mins past. I tell him quiet mouth and that sets him off to do it more and get louder. Sometime he even cries.

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  6. Don't worry, it hopefully will be easier to take him places as he gets older. My brother is medium to severe ASD, he is 30 now. Mom & Dad are in their 60's and they go out more than us now! :-) they take him to church with them, to town twice per week, to concerts, he just loves going along. They also have a girl who comes over to stay with him when they want to go out, and they have a favorite respite care home that he stays at for the weekend sometimes or if they come and visit us for a week. My 4 year old has now been diagnosed with mild ASD (he is verbal with some delays) and we are still trying to get used to taking him places, he's a bit of a handful sometimes :-) I really admire you guys and like reading your blog!

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  7. Heather, my son has the same reaction as you described. I used to take him when I absolutely had to. It doesn't benefit him. He has sensory overload and gets too overwhelmed. He will start pounding his temples with his fists. I'll be a prisoner in my own home for the rest of my life if necessary. NOTHING is worth doing that to him.the last place I took him too he wanted to get way and get home so bad that he went after me and then took off running.he ouldnt get away fast enough. He's gotten a little older now, a little calmer and we may get there. We may not. But lime I said his safety, well being and comfort are my goals. Having hi life comfortably in his own skin is the priority. Some kids just can't do it and should never be pushed to

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  8. My son is 18, non-verbal, does not read or write, suffers from sensory overload, seeks constant hard sensory input and at age 15 began having grand mal seizures. We take him out, but, we have to limit our time out with him. Big box stores with bright lights and
    many people are overwhelming. Eating out is very difficult as he does not understand the concept of waiting for food, and when he is done eating he wants to leave immediately. His stims draw alot of attention; spitting into his hands and wiping the spit into his hair or just spitting on the floor or tabletop and wiping with his hands. At 18 we had hoped that perhaps his behaviors and his need to be constantly moving would lessen...not at all! He is harder to control as he is powerful and for us, it is difficult to find people who want to watch him for a "date night". But for our SANITY we do everything in our power to go out when we can.

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    1. Just a suggestion on the waiting for food thing. Call ahead. Most restaurants will take a call a head order so it will b ready when u get there so no waiting or very little. Hope this helps. I waitress and have a 9 yr old asd son.

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    2. Another trick we had learned was as soon as the food is delivered, get the waitress to bring your bill and pay it then. That way when your son is done eating and ready to go, you don't have to wait for her to do that step when she may be busy serving other customers.

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    3. Great tips - thank you for sharing these ideas!

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  9. understand it to the full! we do the same thing! we have to .. we dont have family nanny´s to take care of our sons both with ASD....... my hubbi works in diffrent shift and the time we have togther as a couple is very little so we DO have to play the selfish card now and agian!! when he is of from work and the kids are in school we go out to eat and stuff like that.... we are taking the kids out to eat and so on but the meltdowns is for the moment Very tuff (in the bad steam roll) at the moment so we order in pizza.. and i have to go shopping at night because if i have to take the boys with me, there will be NO store left when they are done ;O) but i hope we hit a good role SOON so we can go out everybody at the same time that would be nice

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  10. I completely understand why your wife chose to NOT be a prisoner in her own home. My daughter is ASD as well and has been accompanying my husband and I out in public as much as possible since her diagnosis in 2004. My husband and I know the harsh reality is that we will not always be around to take care of her. So, it is our job as her parents,as well as advocates to see that she learns to the best of her ability to function in society and experience as much of the real world as she can handle. And in order to do that...we must take her out..Society goes well beyond the walls of our home and she has just as much right to be out there as the rest of us.

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  11. Taking him out now helps assure that he will be flexible about being in new places later in life, too. It's always best to take the asd kids out just as you are. ~~Teens: I've worked with 'em and they are all different, just like the kids. Some of them are surprisingly good with the right person or people. Only time will tell if Kyle is okay hanging out with someone else eating popcorn and watching a movie, or not.

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  12. We have three children with asd. While all verbal it is all but impossible to take all three out in public at once without people's lives being at risk. My two eldest (11 & 6) are good by themselves and they are in a few groups to assist them socially (Scouts, Church Group, Special Needs Sport). our youngest (3) is a runner and although he destroys the house when at home, he is a complete danger to himself when out. We have had a few near misses of late, and now only go to places that are relatively safe like an enclose playgroup where we can park without having to cross a road.

    It is very important that they go out, but the activities you do really do depend on the child. We do all their activities with them individually and spend very little time as a family so hoping that as they get older (as they are only moderate) things may change and become a little easier

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  13. totally concur. not going places leads to more not going places. i used to dread it, which made it worse for everyone. iPad or iPhone is great backup plan. And we do have to still succumb to what basically amounts to blackmail and let daughter pick one item out at grocery store. Trying to break this habit and have had mixed results. She totally gets the "you can have 1 item thing" and I have had to add disclaimers after she wanted AN ABOVE GROUND SWIMMING POOL that came in a box bigger than out car at Sam's once.

    PS - Xanex also great for Dad.

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  14. Have to be honest and say that we used to be able to take our son anywhere with us before as he was small enough for me to simply pick him up and carry him out. Once he hit about 9 or 10 and started to grow, he started to have more melt-downs while out in public and would not only lash out physically at us, but also strangers. This really cut down on the number of places that we could take him. It wasn't until we got him in a residential program when he was 16, that the support workers, worked with him and with us, visiting different places in public, that he was able to make successful trips out to public places again. We are still on guard though because he has no impulse control and will lash out at someone when least expected. We are now able to take him out to eat at restaurants, grocery shopping, shopping at Walmart and to the Mall, church, etc. but we are very much aware of his mood and keep a close eye on how he is coping. He is 19 years old and loves going out for pizza and garlic sticks with us.

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  15. The more you go, the easier it gets. The less you go, the harder it gets. Although torture at first, we made a point to go back to trouble spots. IE - have a meltdown at Hobby Lobby over not getting some item, we go back to that exact spot. Meltdown at the bookstore over not getting something, go back.

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  16. I agree the older an bigger my son get the harder it get not just going out,but getting people to help even family. No one want to fight a 16yr old boy or change his diaper. It's just not worth it to them and I can't blame them,most of the time I don't want to deal with him It's hard damn hard. I quit a support group because all I heard was how they wouldn't change anything about their child,well I have yet to reach that point. I would except change in a heart beat.

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  17. My suggestion is to start small. Go places that are less crowded and noisy. Places that might intrest him. You can also help him by trying earplugs or headphones with music or sounds that he likes and are calming to drowned out noises that might set him off. Bring a bag of fidget toys, his favorite things. Be flexible and take his lead. When things start overwelming its time to go. Eventually it will be less dramatic for him as he gets use to being out and about and you will be able to do more. It all takes time and no one reacts the same. Just show your support and dont force it. Let him learn he can trust you and his surroundings and that he is safe but if he needs an out that he has one and you will help him. I hope that this helps you and that one day you will not have to worry about it. And dont worry about what others think. There are many kind and compassionate people out there and the only thing that really matters is that you love you child just the way he is and no one can take that from you and you and your child are not afraid to live your lives....good luck!

    Vallerie

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  19. My oldest is HFA, so I take her everywhere. My son is moderately Autistic and non-verbal, and is quite the handful. He runs and screams and gets upset. If I put him in the cart, he will start ripping open food and eating it. The last time I took him to the grocery store, he screamed and screetched because I wouldn't let him wander off while we were in line to check out. I got so many filthy looks from other people, and he's not obviously Autistic like your son, so people think that I'm not being a good parent. Of course, the store was busy and the staff was slow, so it took forever. It was humiliating. We can't take him out to eat because he won't eat anything on the menu (even if he likes it at home) and wants to run around and jump off the chairs. We rarely go out as a family of five. It's just too much.

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  20. My son loves to stay home and so do I!! We do go out too but not as much as we stay home. Since he loves to swim so much but does not like dealing with all the sensory issues, my Dad got us a decent size inflatable pool and we are both happy as clams! He is 8 now and taking him out us easier for sure but still love our beautiful sweet home!

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  21. I offer some hope for his teenage years - our son had a tremendous change in his attitude when he hit puberty - for the better! He has never been as severe as Kyle, is vocal, etc. But he had a lot more issues before puberty hit. For him, puberty has been like a wonder drug!

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  22. How has the service dog helped you? Does it make things easier for you?

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  23. Great post! I wish more parents felt this way! It is so critical for children to be exposed to new experiences!

    - Sasha
    The Autism Helper

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  24. Part of our jobs as parents is to help our children learn to navigate the world. We take our severely autistic son everywhere we can, with our unique backpack of "tricks" and hope for the best. We leave early sometimes, and sometimes the food is packed to go before it hits the table. But we would be doing ourselves and our son a disservice to shelter at home and never expose him to others, or allow others the opportunity to learn and understand.

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  25. Glad we're not the only ones who feel our children need to be out and about. Our son had a few places he's comfortable going and we've found that letting him pick allows us all the opportunity to enjoy it more. I LOVE your posts. Thanks for letting us share in your journey!

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  26. We take my son out - he is 14 but it does get a little harder now that he is older, bigger and very strong. When he says he is ready to go he means it! We can usually get him to wait for a short time though. We go to restaurants, playgrounds and theme parks. We have not been able to do movies - he won't sit still long enough. He loves the beach too - but sometimes will only stay for 30 minutes. I monitor his mood also - if it looks like it's going to be a bad day we don't go.

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  27. I would hate to be stuck in the house with my 16 yr old daughter. I much prefer to be outdoors and doing things too. My daughter loves the countryside, parks and nature and appears to be very relaxed and ease when at anywhere like this. We have to be careful if there is water around but apart from that, she is really good. Restaurants etc...well sometime she will sit with us and other times, she has sat on a completely different table ! We experience people making not so nice comments a lot sadly. You keep on doing what you do and what suits you. You have to make the most of every opportunity - totally get that :-) x

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  28. Not sure if you've ever read anything by Susan Senator but she has a blog post about this called "Experience Breeds Ability" (http://susansenator.com/blog/2011/01/experience-breeds-ability/comment-page-1/#comment-15980) It's been very encouraging to me to think that the more we expose our boys to, the more comfortable they could possibly be with it. Although that's hard to remember when my kid is having a royal meltdown because we dared to go into a store in the mall instead of just walking by.... And I'm like you, I worry that our days of finding people who can competently watch our boys may be limited. I hope I'm wrong because that will be a tough pill for me to swallow.

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  29. Carpe diem <3
    Live for the moment

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  30. My sister is 19 years old and severely autistic. She used to be like the so-called typical autistic child: quiet, afraid of loud noise and crowds, the works. She's gotten a lot better, though. Even though we can't send her to therapy for a multitude of reasons, we can help her in other ways. We started taking her out more and more often, and she loves it! She's grown calmer, more verbal, and happier as time passes. I attribute a lot of this to her being able to go out, see new things and meet new people. I personally think it helps, avid hopefully it will help your young King as well. :)

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  31. My son is 16 years old and I totally agree with you and your wife. My husband and I push the envelope as much as possible. I do not know when our son will plateau. We cram as much into his (our ) life as possible. In the beginning is was very difficult. now we have reached the point that most of the time he looks forward to trying new things and food. I could not be prouder of my son and the great young adult he is becoming. As I write this post my husband is taking him for a driving lesson. Wish us luck. Can not wait to see Autism Daddy on March 18, 2016 at the FACES for Autism Conference at Stockton Seaview Resort in Galloway, NJ

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  32. Push the envelope and GO when they are young (and you are still able to physically control them if necessary). They will learn (probably slowly) but by the time they are enormous in size, they will have the skills to handle the outside world (and you will have the tough skin to handle it too). We took our autism wonder twins everywhere when they were younger. Can't learn to eat out at a restaurant unless you GO there. Our first movie theater experience was 10 minutes long when they were 6 years old. Last weekend I took my now 15 year old sons to see Star Wars with absolutely no problem - it was REALLY enjoyable!

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