Autism and waiting in lines....

[ClaraOswald]

I think those would be great for my son when he is a bit farther along. Right now, he wouldn't understand any of that, unfortunately. He doesn't even understand if we tell him simple things like "we are going to the store" or whatever.

 

[Aladora]

I think those would be great for my son when he is a bit farther along. Right now, he wouldn't understand any of that, unfortunately. He doesn't even understand if we tell him simple things like "we are going to the store" or whatever.

Simple pictures might make all the difference at your son's age! The PECS that I have seen are a small (half size?) binder with velcro strips on the front. Inside the binder are laminated squares with the other half of the velcro. The squares are divided into different types of words like verbs, feelings, people, places, things. So, for a drive to the grocery store you could pull out and place on the front of the binder the squares that have the following:

We (photo or drawing of your family)
car (photo or drawing of your car)
store (photo or drawing of a grocery store)
food (photo or drawing of different food)
home (yes, you guessed it, photo or drawing of your home)

Then, you can sit with your son and point to the pictures while saying "We are going to get in the car and drive to the grocery store. When we are there, we will buy some food and then come home."

You can start very simply and then move to more complex ideas when he is ready for it. Eventually, you can work with him to use the PECS to tell you things such as "I am hungry. I would like an apple" or "I need to go potty" or anything, really. This can be a really useful tool for non-verbal kids and many times a lot of behaviour issues which are caused by frustration over not being able to communicate are lessened or even eliminated.

You also don't even need something as large as a binder, just a laminated sheet with velcro and a bag of laminated pictures will work! If you google "PECS autism" you can find lots of info.

 

[Angel Ariel]

I think those would be great for my son when he is a bit farther along. Right now, he wouldn't understand any of that, unfortunately. He doesn't even understand if we tell him simple things like "we are going to the store" or whatever.

Evn if he might not understand now, going through simple social stories like Aladora mentioned above will help him learn to understand.

My daughter is 4, and still functionally non verbal. She has a select few word approximations, but nothing is consistently used. We've struggled trying to figure out what she understands when she can't respond verbally and also has a difficult time responding physically (motor planning problems ).

The other day I randomly decided to ask her to point to thr letter A, and then to the letter B...something I'd never asked her before, never "worked on" with her at all...and she did it! Not just once, but again about 10 mins later for her father. It really made me stop and think that DH and I have very little insight into how much she understands, and that maybe we need to start taking an approach that she does (or will) understand, even if she can't show us in any way that she does.

I don't know your child, obviously, and I'm not claiming to I just want to offer some support and encouragement from someone else who has a child with communication concerns that our littles can surprise us with what they do understand..and if they don't understand, continuing to expose them will help them learn to understand

Have a great trip!

 

[bumbershoot]

So, you should think about HOW his autism affects his ability to wait in lines or in confined spaces in line

Yes.

Because that's what they need to know. They don't need to know why; they need to know how.

See how your son does and go from there. You will find out very quickly whether you need a DAS or not

I agree.

Lately he has been mad every time I strap him into his car seat...which is what we'll do on the airplane so that stresses me out.

Since he'll be almost 4, and if he hates the carseat, is it possible he would do fine with just the lap belt? He'll be too old for you to hold him (that ends once they turn 2), so he has to be strapped into the seat somehow, but the lap belt maybe could do just fine for him.

Get the das first thing. Our PT told us to on our first trip. She said things will be ruined for the whole trip (her kid has autism) and build up if we don't try to prevent overstimulation and flight/fight mode.

But if they don't know HOW he will be affected, they can't tell the CMs what accommodations they need.

If your son is like mine was at the preschool age he may do better if he can stay in a bubble of space and block out the world while waiting in line. We got a tag for the stroller that allowed us to use our stroller in lines that were big enough to get through.

Such a great idea for some kids.

Since you're a new autism parent I wanted to share that since going gluten free casein free my child's sensorybissues have decreased a lot. I heard about it on a FASD board. But it's only been studied in kids with autism.

I don't think it's true that it's only been studied in autism.

9 years ago when I finally realized that my son's problems were being caused by corn syrup, HFCS, and corn syrup solids (and colors...but once you go corn syrup free you rarely run into colors), I did lots of reading. The description of the OP of the tantrum sounded a LOT like my son when under the influence of those things until we realized it when he was 3. Once we got rid of those things, he was a new kid. (if I had taken him somewhere when he was having the reaction I can easily imagine a diagnosis of...and suddenly I can't remember the name of it...the one with HUGE anger and violence. Not autism, though he would run in circles...I think it was honesty to run off the high blood sugar...that was SUPER fun at Disneyland after he had some dole whip (which does NOT have corn syrup solids in it anymore, but I can't remember if it still has casein).

ANYWAY...even 9 years ago plenty of people knew that dairy and gluten can cause those symptoms! And it wasn't autistic kids whose parents I was talking to, but kids with other issues. It's WELL worth trying.

And when I talk about the corn syrup stuff now (he's 12 and doesn't *want* that feeling, and hasn't wanted it since he was 3 and realized the peace he had without it) with people, they talk about Feingold and FODMAP diets as being similar and VERY helpful. Even for autistic kids.

I don't think he'd tolerate it in line. At 17 months, he was still unsteady on his feet at Disneyland so he had to be in the stroller most of the time. He got REALLY sick of it.

Ergo or Beco, back-carry. If he's little enough to still be rear-facing in the car (he will NOT be rear facing on the place FYI), he's little enough to back-carry!

Evn if he might not understand now, going through simple social stories like Aladora mentioned above will help him learn to understand.

So true. You don't want to try it until he understands. Rather, it is what helps him understand.

I used the sign for "milk" from the earliest days. Many wait until their babies are 6months old, and they have to wait a few months until baby does it. I did it with every milky-meal (and the kid was voracious, where most days all I did was nurse him and read Harry Potter with an occasional bathroom break and nap thrown in for interest), and AT 6 months he started signing "milk" when he wanted milk.

Plus it's something for him to look at.


Another thing for the flight...consider NOT boarding in small-children boarding. With my son, and he was/is neurotypical (once off the corn syrup), getting onboard SO early was utter misery. He wanted to be going. Moving. So sitting there while the whole plane filled then waiting through everything was awful for him. Consider your guy's personality carefully before boarding earlier.

 

[ClaraOswald]

Lots of good advice here...thanks. I bookmarked a lot of it.

As for the PECS, we were basically doing a similar concept with cards I made and laminated. (I took pictures of a million things around the house that we use/play with/etc.) We didn't use a binder though. We used a large pocket chart on the wall. He never took to it or cared much about the pictures. Though he does love cards, in general. We hold up cards and ask what it is and he said the first sound of the word or some approximation. I also have laminated sheets with velco where I stick a few activities and show him before we do them. Then he pulls them off and puts them in a little container. So it sounds like what you guys are telling me about is basically the same concept. We've done it a lot even though he doesn't really get it. I feel like you can only do things for so long without them making a difference before you just need to take a break from it though.

For flying...technically he may be large enough for a lap belt on the plane. But we need the car seat for our destination so it makes the most sense to have him sit in it. He just doesn't like to sit, in general, so what he sits in likely wouldn't make a difference.

Diet advice...I appreciate that many have strong feelings about this. But I will only be listening to the advice of my doctors and my own research but thank you anyway.

We recently started with new therapists so I am hoping they have some good ideas for us along the way. It's all very stressful and overwhelming though. Some days are pretty hard.

 

[Angel Ariel]

I feel like you can only do things for so long without them making a difference before you just need to take a break from it though.

I completely and totally understand what you mean There's nothing wrong with taking a break! You don't want anyone - you OR your child - to get completely burnt out.

It's all very stressful and overwhelming though. Some days are pretty hard.

I am right there with you...#MomSolidarity. There are days I just want to (or sometimes actually do) break down into tears. I hate that "simple" things are so hard for DD and that she's had to struggle and fight for every milestone. We are blessed that she generally does it all with a smile on her face, but it is still very hard some days. If you ever need to vent, feel free to PM me. We're not dealing with autism specifically, but we have a lot of medical issues we're facing and lots of therapies every week...venting to someone helps!

 

[Butterfly123]

Lots of good advice here...thanks. I bookmarked a lot of it.

As for the PECS, we were basically doing a similar concept with cards I made and laminated. (I took pictures of a million things around the house that we use/play with/etc.) We didn't use a binder though. We used a large pocket chart on the wall. He never took to it or cared much about the pictures. Though he does love cards, in general. We hold up cards and ask what it is and he said the first sound of the word or some approximation. I also have laminated sheets with velco where I stick a few activities and show him before we do them. Then he pulls them off and puts them in a little container. So it sounds like what you guys are telling me about is basically the same concept. We've done it a lot even though he doesn't really get it. I feel like you can only do things for so long without them making a difference before you just need to take a break from it though.

For flying...technically he may be large enough for a lap belt on the plane. But we need the car seat for our destination so it makes the most sense to have him sit in it. He just doesn't like to sit, in general, so what he sits in likely wouldn't make a difference.

Diet advice...I appreciate that many have strong feelings about this. But I will only be listening to the advice of my doctors and my own research but thank you anyway.

We recently started with new therapists so I am hoping they have some good ideas for us along the way. It's all very stressful and overwhelming though. Some days are pretty hard.

Clearly you have a good head on your shoulders, and are already advocating for your son. He is lucky to have mom who is so in his corner. It's hard, so hard, to see our kids struggle. But the victories are very, very sweet. I wish you and your son the very best on your journey.

 

[Kindermouse]

For flying...technically he may be large enough for a lap belt on the plane. But we need the car seat for our destination so it makes the most sense to have him sit in it. He just doesn't like to sit, in general, so what he sits in likely wouldn't make a difference.
.

I feel for you as we went through that at right around 2- it was not fun times but it did pass. hopefully it will for yours too! and even more hopefully it will pass before your plane ride. I used the car seat on planes because my son would wiggle out of lap belts at that age-he just wanted to be free and running at 2.

My son was on the move so constantly at age 2 that I had a developmental pediatrician wowed and commenting about how she had never seen a child with such intense and sustained hyperactivity. He literally ran in circles for hours repeating the same motions of-flop onto the exercise ball, run to the mini tramp and jump 10 times, and run back to the exercise ball and begin again. Hours and top speed. Gosh when I look at him now at age 13 and think he is so lazy its actually funny to consider the difference and to remember how he seemed like a machine running on batteries at that age (not able to stop until he ran out of energy and then when he did he would fall asleep).

Even if your son doesn't use it now I would have my stroller handy and set up as a happy oasis with toys in case he suddenly needs to curl up. worst case scenario you or your hubby has to push and park it but at least it will carry all your stuff for you.

 

[ClaraOswald]

Yeah, we are definitely bringing the stroller. When we go to the botanical gardens...after about a mile or so he wants to sit in the stroller.

We will be staying at the Desert Inn so it will be handy for go to and from the parks.

Last time we gate checked it but I think this time we will just bag check it. I am sure I'll be pushing it around empty a lot but I'm okay with it. Sometimes I do like having all of our stuff handy. Pre-baby days (and I'm sure post stroller days) we would rent a locker at Disneyland/WDW.

 

[Aladora]

For flying...technically he may be large enough for a lap belt on the plane. But we need the car seat for our destination so it makes the most sense to have him sit in it. He just doesn't like to sit, in general, so what he sits in likely wouldn't make a difference.

For flying, he might be happier using a CARES harness. We rented one when we flew Victoria to Ottawa when DS was 3 or 4 and it worked like a dream!

It does not help with needing a car seat in Anaheim but it might make the flight easier?

Kids Fly Safe

 

[ClaraOswald]

I would love to use the CARES harness but we'd have nowhere to put the car seat, unfortunately.

 

[wilkeliza]

I would love to use the CARES harness but we'd have nowhere to put the car seat, unfortunately.

Have you considered checking it? Car seats actually don't count as a checked bag on most airlines. Same for strollers.

 

[Aladora]

I would love to use the CARES harness but we'd have nowhere to put the car seat, unfortunately.

I know you are not willing to check your car seat with luggage because of the potential for damage but what about gate checking it? Alternatively, you could skip the car seat totally and get a car/driver who provides one.

We gate checked DS's car seat on at least 3 trips and checked his booster (once he was big enough for a booster) on 3 other trips. Zero damage to any of the seats.

 

[Jaina]

Have you considered checking it? Car seats actually don't count as a checked bag on most airlines. Same for strollers.

(oops! Aladora already posted this! )
It's not considered safe to check it as luggage (unless its in its original box - the way luggage is handled is often the same forces as can be encountered in a minor car crash, and there is no way of knowing if its safety has been compromised) but you can gate check it if you feel he'll do better no being stuck in it during the flight. Whatever works for you!!

 

[wilkeliza]

Gate checked is handled the same as regular luggage so not sure why it makes a difference. I've watch gate check stuff just get dropped over the side to the guy/gal waiting below which seems just as bad as being toss from one belt to a person to another. The luggage still goes in the same spot on the plane.

 

[ClaraOswald]

Yeah, I wouldn't check or gate check since they throw them around. (They broke the wheel on our gate-checked stroller last time.)

We do have the box the car seat came in. It had literally no packing material or anything which I found odd.

Upon further research, I don't think the CARES would work for us anyway. It doesn't have a crotch strap and I'd read of antsy/upset kids basically sliding down and the harness not being that great for them.

I think the best we can do is hope that when our trip arrives, he's going through a good sitting phase...ha!

The seat we got for travel is a bit different than his usual seat. So I might install it in the car and use it a little before the trip so he can get used to it. (Also going to be strange since it's forward facing but he's still rear facing.)

 

[Kindermouse]

Yeah, I would check or gate check since they throw them around. (They broke the wheel on our gate-checked stroller last time.)

They broke my 750 dollar Mclaren flying into nashville when my son was 1-I was so stinking mad when I went to unfold it and it basically fell apart. I ended up buying a cheapo while we were there visiting family and that became my travel stroller for a long time. Still burns me when I think about that Mclaren though.

I saw something like this recently and I thought to myself-where was that when my kid was little.

http://drprem.com/parenting/sit-n-stroll-for-a-smooth-ride.html

 

[ChloroformSdxn]

I don't understand this statement. Is your child adopted from an orphanage?

No, my child was not. My point was that there are many people who still believe in the "refrigerator mother" syndrome, and feel that mothers are the cause of autism. The point is that generally, autism is genetic and not caused by abuse. Many, many, people still think it's caused by poor mothering, which simply isn't the case. The level of abuse required to produce autistic symptoms is severe and quite rare.

His receptive language is delayed at this point so while we do explain things to him...he doesn't really "get" a lot of it yet. So we can try our best to prepare him for flying but I don't know if he'll understand it.

No behaviorist at this point. It hasn't been recommended to us. Just speech, OT, and PT. No ABA. I am on the fence about that and need to do more research.

You can get social stories about flying - I know with my son at 3, he understood social stories and visuals. We were working with a BCBA though (Board Certified Behaviour Analyst.) They introduced things like instructional control, etc. He had been in speech for two years at that point, with almost no progress. Within 6 weeks of starting ABA, he had words. He definitely has a speech delay, but ABA is what helped him start to speak. I'm a little surprised that ABA wasn't mentioned, since it's the only therapy with a solid evidentiary backing, and it's endorsed by the AAP, etc. It's come a long way from what it was 20 years ago, and the data tracking is invaluable.

I think those would be great for my son when he is a bit farther along. Right now, he wouldn't understand any of that, unfortunately. He doesn't even understand if we tell him simple things like "we are going to the store" or whatever.

My kid didn't understand that either. PECS was really helpful with that, and he got those things long before he got receptive language. Even now at 5, it's still more helpful for him and used in his kindergarten.

 

[smartlabelprint]

No, my child was not. My point was that there are many people who still believe in the "refrigerator mother" syndrome, and feel that mothers are the cause of autism. The point is that generally, autism is genetic and not caused by abuse. Many, many, people still think it's caused by poor mothering, which simply isn't the case. The level of abuse required to produce autistic symptoms is severe and quite rare.
You can get social stories about flying - I know with my son at 3, he understood social stories and visuals. We were working with a BCBA though (Board Certified Behaviour Analyst.) They introduced things like instructional control, etc. He had been in speech for two years at that point, with almost no progress. Within 6 weeks of starting ABA, he had words. He definitely has a speech delay, but ABA is what helped him start to speak. I'm a little surprised that ABA wasn't mentioned, since it's the only therapy with a solid evidentiary backing, and it's endorsed by the AAP, etc. It's come a long way from what it was 20 years ago, and the data tracking is invaluable.

My kid didn't understand that either. PECS was really helpful with that, and he got those things long before he got receptive language. Even now at 5, it's still more helpful for him and used in his kindergarten.

I agree that mothers don't give/cause autism. The case I was speaking of the child had been alone for nearly 3 years much of the time and many told me she had autism because of the circles, hand flapping, sensory with foods, when she has not been given that diagnosis.

 

[ClaraOswald]

OP here - So our trip is next month! EEK!

Yesterday we were somewhere where we had to wait in a line. So....yeah...I'm nervous now. He was screaming and crying after only a couple minutes.