Staring at other people's children (ie tantrums, crying etc.)

[Poohnatic]

Thank you so much for this thread. We are leaving in a scant 20 days with our 5 yr. old DS who has PDD-NOS. He is in the moderate range.

This year, we're hoping all goes well, but we honestly don't know. DH and I are just planning on letting him dictate (sort of) what we do.

If ALL ELSE fails, he loves to swim and we can spend the majority of the time at the resort with the parks as a "break" from the pool. There's always the parades!! Sorry to ramble. Thanks again.

Tracey,

Before moving here, we did twice a year trips with my sons from the time oldest was 5 (about 8 months prior to DX). Some things we've learned with Neil, that may help.

If your son doesn't mind wearing hats, get him a ball cap to help cut down on stimuli. Likewise, until six months ago, we'd get the park strollers, as it allowed Neil to 'cocoon' and minimize the visual overload.

Good deal following his pace-the loudness may affect him on some rides. YMMV, but we find that MK is the best park for my son-everything's close together and we can keep him moving.

We learned to take 'pool breaks'. If we tried to keep him going in the parks for five days in a row, we'd have problems. A pool morning every third day worked wonders. I can't wait to build a pool-he really enjoys it.

Go to guest relations, explain your situation and get a Guest Assistance Card. Our trips became much easier. I'd wear a lanyard in the parks, and it'd be tucked in there with our other stuff. More often than not, the CM's would notice we had one and would ask what assistance we needed before we even got to the point of asking for help.

Suzanne

 

[michelle9343]

Carrieberry thanks for starting this post. Education is a powerful tool. don8life I have read many poems but this one had never been shared with me before thanks It was like I wrote it myself, really made me shed many tears, thanks I will share it with many.
I just wanted to share some of my experiences. My DD has a rare genetic disorder. When we go to Disney she uses her wheelchair, but when she was younger her chair looked more like a stroller. Anyway I have had many rude comments any a multitude of judgemental stares. Last year I had a light bulb moment and it really change my life. I actually pity the people who insult me. If the biggest problem they have in life is being inconvenced by my DD crying or screaming imagin how boring a life they must lead. That being said the place I have the most problems in are restaurants My DD is blessed with a great love of food but has not mastered the waiting game yet. I do not take her to linen and china type of places just family friendly. Every time it is really a learning experience and I will not just remove her I need to help her through her issues. If it goes beyond a reasonible amount of time then of course we take her for a walk or something. I moved my DD to Florida because life is to short not to be happy and the amount of amazing things that happen while on poperty is nothing short of a miricle. My DD is non-verble and not toilet trained as only one kidney ,acid reflux, seizure disorder ,cronic sinus and ear infections. She is sick about 200 day out of the year and Disney bringd her so much joy. Her most amazing moment can 3 years ago when she startes saying MICK for mickey it is her only true word and now when she sees tigger she bounces and if she sees Donald she makes a funny ducaducaduca sound . Like I sais truely amazing.

 

[lecach]

I have a couple of questions for all you special parents - I hope you dont mind....

If I am out somewhere and see a meltdown in progress is it okay to ask if there is anything I can do? I know the answer is probably no....but I keep thinking about the dad at the football game that I mentioned on page 7. Maybe he could have used someone to go get his wife from her seat in the stands - he certainly couldnt go get her. I just dont want to take a chance of offending someone by asking if they need something.

Also - for those of you with ASD kids....did you have any signs when your kids were babies that something wasnt quite right? My son is 10 months old and having friends with an Aspergers child has always made me worry about my son. I really think he's probably fine....but I was just wondering.

Hope I havent offended anyone with my questions...but I figure that this is the best place to ask.

 

[Poohnatic]

We knew something was clearly different about my son at 3, but looking back, we had tons of signs earlier.

His diagnosis wasn't made until he was 5 1/2, his amazing principal initiated a meeting and offered to do all the testing.

Ironically, I manage a retail establishment that caters to children and see kids frequently that I can tell are probably 'on the spectrum'. Once you have a child there, you can tell. The hard part of this is that I want to talk to the parent, and have to do so in a way that I can bring the topic around to ASD without mentioning their child!

Suzanne

 

[Nancyg56]

Carrieberry thanks for starting this post. Education is a powerful tool. don8life I have read many poems but this one had never been shared with me before thanks It was like I wrote it myself, really made me shed many tears, thanks I will share it with many.
I just wanted to share some of my experiences. My DD has a rare genetic disorder. When we go to Disney she uses her wheelchair, but when she was younger her chair looked more like a stroller. Anyway I have had many rude comments any a multitude of judgemental stares. Last year I had a light bulb moment and it really change my life. I actually pity the people who insult me. If the biggest problem they have in life is being inconvenced by my DD crying or screaming imagin how boring a life they must lead. That being said the place I have the most problems in are restaurants My DD is blessed with a great love of food but has not mastered the waiting game yet. I do not take her to linen and china type of places just family friendly. Every time it is really a learning experience and I will not just remove her I need to help her through her issues. If it goes beyond a reasonible amount of time then of course we take her for a walk or something. I moved my DD to Florida because life is to short not to be happy and the amount of amazing things that happen while on poperty is nothing short of a miricle. My DD is non-verble and not toilet trained as only one kidney ,acid reflux, seizure disorder ,cronic sinus and ear infections. She is sick about 200 day out of the year and Disney bringd her so much joy. Her most amazing moment can 3 years ago when she startes saying MICK for mickey it is her only true word and now when she sees tigger she bounces and if she sees Donald she makes a funny ducaducaduca sound . Like I sais truely amazing.

Oh Michelle, your poor baby! I keep reading this thread, and I keep learning something new. I cannot imagine the balancing act that parents with special need children manange on a daily basis, and never thought about the day to day experiences that these children must be allowed in order to learn to cope with the issue.

I agree that all children should be able to be happy, esp in a magical place like Disney, even if there are others around who need to deal with some "moments". I really do wish that there was a way to enlighten those around you so that we could make the matter easier for you, although I do not believe that you owe us an explanation.

Kudos to all of the parents and caregivers that keep braving the stares and comments to ensure that their kids are given the opportunities as kids without disbilities. I hope that, after you have shared your stories, and tried to inform us, maybe we can make offer some measure of support if a child has a meltdown. I know that I will NEVER use the word "meltdown" to describe my DGD's temper tantrum again. She has tantrums at times, but I know now that there is a difference between her acting out and that of a child who is experiencing sensory overload due to a disability that I may or may not be able to see.

 

[taximomfor4]

I have a couple of questions for all you special parents - I hope you dont mind....

If I am out somewhere and see a meltdown in progress is it okay to ask if there is anything I can do? I know the answer is probably no....but I keep thinking about the dad at the football game that I mentioned on page 7. Maybe he could have used someone to go get his wife from her seat in the stands - he certainly couldnt go get her. I just dont want to take a chance of offending someone by asking if they need something.

Hope I havent offended anyone with my questions...but I figure that this is the best place to ask.

I can only speak for myself, but there were times in bad meltdowns (or meltdowns with particularly bad timing) that I WISHED someone would stop and offer a hand. Maybe some would say no, but I can't imagine too many people would take offense. And even if I didn't need help at that particular time, at least I would know that SOME people around me are caring!

7yo Rissa is not ASD, but she has SID, Gross + FIne motor delay, impaired vision in one eye, hypermobile joints, and small stature. First signs of motor issues were at birth, but nobody pegged the signs correctly. SID, family gatherings, strimulating places, etc were impossible for us to go to. We knew something was up after about 11 mos. She is very tactile-defensive so it was pretty obvious! Her impaired vision idea came from her geneticist (who saw her for her motor delays, hypermobile joints, and small stature) when she was 2. She had, since infancy, looked at everything with her head tipped way back.

Try not to worry about whether your son might have something. If he does, you'll know eventually! And even if he does, he will still be him!
Beth

 

[marj70]

I have a couple of questions for all you special parents - I hope you dont mind....

If I am out somewhere and see a meltdown in progress is it okay to ask if there is anything I can do? I know the answer is probably no....but I keep thinking about the dad at the football game that I mentioned on page 7. Maybe he could have used someone to go get his wife from her seat in the stands - he certainly couldnt go get her. I just dont want to take a chance of offending someone by asking if they need something.

Also - for those of you with ASD kids....did you have any signs when your kids were babies that something wasnt quite right? My son is 10 months old and having friends with an Aspergers child has always made me worry about my son. I really think he's probably fine....but I was just wondering.

Hope I havent offended anyone with my questions...but I figure that this is the best place to ask.

I can't see where it is ever wrong to ask honest questions. If my son is melting down there is probably not much you can do, but I would be touched to have someone offer assistance. Honestly, no one ever has before. I won't be offended at all by some offering support/help or anything positive like that.

With my son I just knew from the time he was a baby that he was different. He didn't interact like other babies we were around, didn't coo and make the talking sounds babies make, was always fairly cranky as far as going to the store, restaurants, etc (moreso than other children of the same age). He also did a strange thing with his hands, it looked like he was starting a motorcycle (he now hand flaps). I think the most important thing is just trust your gut and have him evaluated as early as possible if you have ANY inkling of something being not right. Early intervention is so important. I truly believe it may have saved my son in many ways. He started speech and Occupational Therapy at age 2 with the state's early intervention program, which is wonderful. I don't think he would have any words now without that speech therapy from the beginning. At 3 he started an all-day Special Needs Preschool through the public school and it is an AMAZING program as well. He has huge challenges, but can now eat in the lunchroom, wait in a line, play with other children, follow directions, do an art project--I could go on and on. Trust your instincts, and it never hurts to have him checked out. It took me 3 doctors to have one finally listen to me that something was wrong, and took DH a long time to see it. He kept saying "you watch too much Oprah, he's fine!".

On a side note the one comment from others that makes me crazy is when people say things like "that's no different than a normal 3 year old, they all have tantrums" or "that's like every 3 year old...". It makes me crazy, I finally asked a friend, when she said Alex's tantrums where no worse than her son's, "does your son give himself black eyes, bite his hands until they bleed, or bust your lip by headbutting you?". I know people are just trying to cheer you up or whatever with that comment but it always makes me crazy.

 

[lecach]

My son does the "starting the motorcycle thing" sometimes - usually just one hand. He looks at his hand and twists it back and forth. He also head butts me occasionally- but thats usually when he's very tired and ready for bed. He interacts really well at daycare. They say he is very social. And he loves to be held and hugged. I know I shouldnt worry - I think its just that when you know that something exists, you worry that your child might have it.

 

[marj70]

It's always better to worry, I think, than to deny and not get help. I'm not saying there is anything going on--as was discussed earlier in the thread self-diagnosis is dangerous. Better to find out from someone trained and qualified. But if your gut is telling you to have it checked it is better not to wait. Early intervention is KEY.

There are a lot of misconceptions about ASD. I hear the term "rainman" a lot, especially with my son because he is a lot like that, but there is no cookie cutter definition of how an autistic child behaves. For example, I thought my son couldn't have autism because he is so loving and affectionate, always has been. Now I know that they are all different and many are very loving. Just remember there is no one way a child with autism acts, and not all have all of the symptoms are markers either. And the range is so huge as has been discussed earlier--it is a spectrum disorder.

On a side note, I've also noticed that people are less understanding as Alex starts to look more like a child and less like a toddler.

 

[minkydog]

My son does the "starting the motorcycle thing" sometimes - usually just one hand. He looks at his hand and twists it back and forth. He also head butts me occasionally- but thats usually when he's very tired and ready for bed. He interacts really well at daycare. They say he is very social. And he loves to be held and hugged. I know I shouldnt worry - I think its just that when you know that something exists, you worry that your child might have it.

Remind yourself that one or two quirky behaviors do not add up to a diagnosis. Most of us with bona fide autism spectrum kids have known our kids were different from early on. My son was different from the get-go. By the time he was officially diagnosed, i was way past the scary "what if?" stage--I already knew. If you' are really concerned about your child, bring it up with your ped and ask him for an evaluation.

 

[Chicago526]

All I can say is that when I see a kid having a melt down, I just say to myself "well, somone is having a bad day!" and move on. I figure the parent(s) have enough to deal with, they don't need me to give unsolicited parenting advice! If they are bad parents then they are getting what they deserve. If they are good parents, then they don't need an audience or judgements from onlookers.

 

[minkydog]

I thought my son couldn't have autism because he is so loving and affectionate, always has been.

You know, the lack of eye contact and affection was the thing that first tipped me off to my son's condition. I remember crying because I felt I could handle anything but having a child unable to give and receive love. Christian was almost 3yo before he made eye contact with me. He would sit stiffly in my arms like he couldn't wait to get down. He cried a lot and was hard to comfort It was a long, hard wilderness road.

With intensive therapy of all kinds, we opened up his world. He's 10yo now and one of the most wonderful, loving kids you could ever know. He smiles, he plays with us, he seeks us out for hugs. He hums the tonal sounds for "I love you". Last year he learned how to kiss, big open-mouthed slobbery licks on the cheek. I'll take 'em

It's a privilege to be Christian's mother.

 

[popeyeohoh]

When we were at our resort myself and children were standing at the top of a landing. A woman and her small son were coming up the stairs. He was having a royal fit. We stood to the side so she could come up the steps, she assumed I had some bad thoughts in my head because she said something to the effect that I thought her parenting skills were lacking. What!! I never said anything and tried to ignore her screaming child and her rude comments to him. I just kept on going. What a hag.

 

[Nancyg56]

I also say you know yoru child. If there are questions, please follow thru with your DR. I will share my DD story about my beautiful little grandaughter. She cried EVERY time she was fed. My DD was nursing, but needed to change to formula, and change and change and change. When she was introduced to solids... she cried after one or two small bites. This was especially true after fruit. Her ped said it was "normal" to cry and that she was fine. She did not gain weight. My DD insisted on tests, and the ped again said not to worry. My DD scheduled tests with a Ped endocrinologist....ped canceled when the specialist asked for a referral/ DD fired pedi. Called another Dr who saw my DGD 15 minutes after the call when told her weight. Turns out she had acid reflux and failure to thrive. She needed medication to stimulate an appetite that was nonexistant. She could have died at that point in her life had my DD not looked for answers. For 3 years, she was in a danger zone regarding weight, and was in for weekly weight checks. Thankfully, she had no lesions or ulcers, but her little throat was so inflamed she was always choking on food. One day she was with us, and choked on a small bite of bread that had puffed up in her throat. Thank God the Dh was there, he knew how to do the ped heimlich maneuver. I still cannot hear a child choke without holdng my breath and get a rock in the pit of my stomach. Today, she is out of danger, but has not outgrown the reflux. We feel so bad as she takes her prevacid twice a day, but are aware that there are children who suffer so much more than she. I never thought that I would be so grateful that her DR would say that she could not have the flu vacine as there were children who needed it more thatn she. The previous year we had almost lost her with a bout of stomach bug.

Anyway, always trust your gut. There are some Dr's who are afraid of a second opinion. (Her new dr actually asked my DD if another could check to see if he had missed anything.) And always remember to tell your precious babies how much you love them and how special they are to you.

 

[jann1033]

what causes this and why do so many have mutiple problems? guess i am really wondering as a friend' s little boy is developmentally delayed ( physically, is 16 months and doesn't really roll over back to front, can't pull himself up ,he did scoot around some if on his tummy(Dr. recommended and they are doing testing) and has always been a little "different". he has a very domineering older brother ( 4,who is mean imo and ocd (or headed that way as his dad is also) but also spoiled...every moment of the parent's attention is on this older kid, to the extent the woman doing the testing on the younger one mentioned it to the parents( said to put the older one in preschool to get the baby relief from him) parents deny it but it's true. they always say he is "just a hard baby" but he seems very sweet and loving to me except he screams when his brother is mean to him( which i would too) just wonder if it is something chemical, physical, environmental or maybe different or undetermined causes?

 

[taximomfor4]

what causes this and why do so many have mutiple problems? guess i am really wondering as a friend' s little boy is developmentally delayed ( physically, is 16 months and doesn't really roll over back to front, can't pull himself up ,he did scoot around some if on his tummy(Dr. recommended and they are doing testing) and has always been a little "different". he has a very domineering older brother ( 4,who is mean imo and ocd (or headed that way as his dad is also) but also spoiled...every moment of the parent's attention is on this older kid, to the extent the woman doing the testing on the younger one mentioned it to the parents( said to put the older one in preschool to get the baby relief from him) parents deny it but it's true. they always say he is "just a hard baby" but he seems very sweet and loving to me except he screams when his brother is mean to him( which i would too) just wonder if it is something chemical, physical, environmental or maybe different or undetermined causes?

Well, I think you guessed many of the possible causes. Chemical, physical, environmental, different or undetermined. For dd7, it is as yet unknown. The sad thing is that without a "diagnosis" she is disqualified for many special programs. School won't give her an IEP or even a 504, many many special needs camps I have looked at have a list of diagnoses they accept. She has NO diagnosis. She has a left eye coloboma, hydronephrosis (pyelocaliectasis) in her left kidney, a cyst on her pineal gland (brain), short stature with genetic "markers", gross motor delay, fine motor delay, tremors, poor motor planning, Sensory integration dysfunction (tactile, movement, sound), and hyperextensible joints (too-loose ligaments). Oh, and what we think are occasional partial seizures, but those have not been caught on either EEG so unproven. She is under watch by a geneticist, and her pediatric opthalmologist is also a geneticist himself. They are sure, based on some facial abnormalities she has, that she has a genetic "syndrome" but most of those have no definitive blood test. Her advanced, not delayed, mental abilities exclude her from many syndromes right off the bat. So who knows. We just know that she can really impress an audience when she Irish Dances... many strangers approach us after shows, ask her age, and say how she stole the show. She is always the smallest one up there but is very precise and earnest, and if she looks out at the audience and someone winks or smiles right at her (happens ALL the time), she gets the biggest smile on her face as she dances. What makes this more impressive is that #1) after the dance is done, the line of kids go down the steps...but she wavers and hesitates until eventually she gets down them herself VERY slowly, or a teen dancer gets her hand and helps her....and #2.) When they are in class learning new things, she gives up on trying, memorizes what they are learning, and practices for HOURS AND HOURS every day till she gets it right every time. I have often thought, if she had to be cursed with the physical difficulties she has, she was thrice blessed with 3x the patience and perseverence of an adult!

Sorry I rambled so long, I just am so proud of her. Heck, she even danced at EPCOT with Off Kilter. The bass player kept watching her as he played, grinning all the while. Then afterward, we got a picture. I'll try to post it here...... We didn't even know (Bad Mommy!) that one of the band members picked up dd3 until the pix got developed. My special needs dd is front + center, in pigtails that you can't really see.

 

[Nancyg56]

Well, I think you guessed many of the possible causes. Chemical, physical, environmental, different or undetermined. For dd7, it is as yet unknown. The sad thing is that without a "diagnosis" she is disqualified for many special programs. School won't give her an IEP or even a 504, many many special needs camps I have looked at have a list of diagnoses they accept. She has NO diagnosis. She has a left eye coloboma, hydronephrosis (pyelocaliectasis) in her left kidney, a cyst on her pineal gland (brain), short stature with genetic "markers", gross motor delay, fine motor delay, tremors, poor motor planning, Sensory integration dysfunction (tactile, movement, sound), and hyperextensible joints (too-loose ligaments). Oh, and what we think are occasional partial seizures, but those have not been caught on either EEG so unproven. She is under watch by a geneticist, and her pediatric opthalmologist is also a geneticist himself. They are sure, based on some facial abnormalities she has, that she has a genetic "syndrome" but most of those have no definitive blood test. Her advanced, not delayed, mental abilities exclude her from many syndromes right off the bat. So who knows. We just know that she can really impress an audience when she Irish Dances... many strangers approach us after shows, ask her age, and say how she stole the show. She is always the smallest one up there but is very precise and earnest, and if she looks out at the audience and someone winks or smiles right at her (happens ALL the time), she gets the biggest smile on her face as she dances. What makes this more impressive is that #1) after the dance is done, the line of kids go down the steps...but she wavers and hesitates until eventually she gets down them herself VERY slowly, or a teen dancer gets her hand and helps her....and #2.) When they are in class learning new things, she gives up on trying, memorizes what they are learning, and practices for HOURS AND HOURS every day till she gets it right every time. I have often thought, if she had to be cursed with the physical difficulties she has, she was thrice blessed with 3x the patience and perseverence of an adult!

Sorry I rambled so long, I just am so proud of her. Heck, she even danced at EPCOT with Off Kilter. The bass player kept watching her as he played, grinning all the while. Then afterward, we got a picture. I'll try to post it here...... We didn't even know (Bad Mommy!) that one of the band members picked up dd3 until the pix got developed. My special needs dd is front + center, in pigtails that you can't really see.

You have a lovely family.

 

[SamIAm21]

Although I haven't read this whole thread, I find it enlightening and truly heartwarming to see how much "most" people truly care about one another.


I had a similar moment with my DD-5 at the MK right after the Spectromagic Parade. My daughter had been up on my DH's shoulders to see the parade. She has been going through "growing pains" lately and her legs tend to fall asleep rather easy if she's seated uncomfortably. Well after the parade ended, we went to set her back down to the ground and her legs gave way and then began to hurt badly with that numb, pins and needles sensation. She screamed so loudly everyone, and I mean everyone turned and stared at us as if we had just beaten her in the head. I heard some rude remarks and I really couldn't believe what I had heard. Disney World is full of children and most children have tantrums or bad moments every single day. I was sort of shocked at the lack of tolerance among what was most likely a large group of parents.

 

[TKERBELL]

I have been reading this post for two days and I have had the same reaction everytime with every post - I have full on crying - that is why it has taken me two days to read thru this

Please let me send my sincerest apologizes for the insensitve individuals who only "read a book by it's cover" and fail to see that there may be more to the story than they view with their own eyes - "Believe half of what you see and none of what you hear"

DH & I are parents to five children - four are living - I lost my daughter to an accident in 1992 - We have 3 boys (11,9 &4) and we are currently raising my 14 year old cousin (a girl). My 11 year old was the first child born after my DD death therefore perpetuating a spoiled child ( I admit it I was grateful and I did not want him to miss out on anything therefore I and my parents gave in EVERYTIME) I have been paying for it - I don't take complete blame as he does have an "anger management issue" - he does not do change at all - it brings on a full meltdown - they have gotten better over the years and I have been in therapy for my "parenting issues" and learning how to undo the damage that I am responsible for. I also know that my ex-husband (11 y.o. biological father) (current DH & I have been together since 11 y.o. was 6 mos. old)was an AVID anabolic steroid user and our pediatrician has informed me that his usage may have contributed to his meltdowns and his inablity to deal with his anger (chemical imbalance) - I have to make sure that he eats good carbs every 2-3 hours - I have chosen NOT to medicate him but rather deal with it by nutrition (no red dye...minimal white flour....etc..)

Please know that I an NOT comparing myself with any of the parents here that have children with Autisim, OCD, ADHD,ADD....etc I just wanted all of you to know that I do empathize with you - "But for the Grace of God go I "- and that if I am ever where you are and you need me - all you have to do is call - I will watch out for you whenever I see you and I will be the one who will give you the nod and wink of ackowledgement - so that you may know I will gladly lend you a helping hand in any way possible that will benefit you and your family in your time of need!!!!

Always remember that in those times when we only see one set of footsteps in the sand it is then that God is carrying us!!!

Thank you for allowing me a glimpse inside your lives - God Bless/Speed.

 

[cmonroe]

I agree with you completely. When I see someone having a hard time I will flash them a smile or a wink. We all need to be supportive of one another. Being a parent is so hard. People who make comments are just miserable people with big mouths. If we wanted any suggestions from passing strangers we would ask for them.
Tara

I do the same, because we've all been through a situation where are children have had tantrums in a public place. It's funny you feel some comradere when a parent looks at you with a sympathetic look saying, "I've been there, we understand".

I'd prefer you recieved no comments at all, but I hope most of them came from people without children. If someone tells you they have a child that's never acted up or had a tantrum, they're lying.

I know a lot of people that have seen my children and others act up and say some pretty arrogant/ignorant things. I say to myself, "you don't have children yet, you do not have any idea what it is like to stay up all night with your child and have to work the next day, etc. and do the things parents do."

Amen to supporting fellow parents.

Carrieberry your reaction speaks to your patience and self-control.
Take comfort that there are parents out there that consider what you do an amazing job!