Clueless in New England

[Brenle]

No greeting at all generally, since it is a social event. No need to say goodbye either. Sometimes a half wave is OK. Looking in the eye is typically an extreme anxiety generator. Believe me he knows you are there.

boowkormde

Thank you. Didn't know looking in the eye causes anxiety. Poor kid! He must think I'm a psycho aunt.

 

[Brenle]

It is sort of like the force fields in Star Trek. The more you push the stronger the force field. It is like chasing butterflies and then laying down to sleep. You wake up and find butterflies all over you. Resistance is futile. The kid may be a future rocket scientist but it will take a lot of time to sit there and just ignore him. Also do not forget to read the boards here for some insight like the lady who sat for days just signing the word ball and playing with her daughter.

As for the parents being in denial that is possible. Another possibility is that they do not know about this board. The parents may not have a lot of knowledge in dealing with an autistic child. Maybe they were told the diagnosis then what the school can do and what they can do but not a lot of the other stuff like the tips the people here share. Some people like myself and bookwormde go out and hunt down all the information they can find while others do not.

Thank you. I have read other posts and they are very helpful as well. The last thing I went to do is ignore my nephew, which I don't. But I don't want to cause him distress, either.

His parents have gone to classes and spoke to professionals, parents and children with autism who are now adults. My niece has even gone to classes for siblings. And that is great for them. I just wish they'd share some of that knowledge with the rest of the family.

 

[mechurchlady]

I mean that you ignore him and play your game and he plays with his game. In time he will get used to you and make contact. the NT such as yourself is trained as a child to greet people and often make contact such as hugs. To a neurovariant they do not do that as they lack social skills.

There was a Reader's Digest article on Why Johnny can Read. Someone decided to find out why people were successful in life instead of failures. The poor kid might have a local grocer who encourages the child, the famous pianist might have had a neighbor who gave her free lessons, and the astronaut might have had a grandmother who encouraged him. You are very important to that kid's future. You do not know me and my campaigning to get every kid a full and rich life as possible. That is my thing.

Just ignore the kid and when he is comfortable then you can interact with him. I would never mean to actually just walk away. I have spent too much time online trying to teach and help kids who are having a bad time in life. I never give up on kids, never.

Sorry if I upset you as I should have got my 3 hours sleep but I also had to see about getting my computer fixed.

 

[Brenle]

I mean that you ignore him and play your game and he plays with his game. In time he will get used to you and make contact. the NT such as yourself is trained as a child to greet people and often make contact such as hugs. To a neurovariant they do not do that as they lack social skills.

There was a Reader's Digest article on Why Johnny can Read. Someone decided to find out why people were successful in life instead of failures. The poor kid might have a local grocer who encourages the child, the famous pianist might have had a neighbor who gave her free lessons, and the astronaut might have had a grandmother who encouraged him. You are very important to that kid's future. You do not know me and my campaigning to get every kid a full and rich life as possible. That is my thing.

Just ignore the kid and when he is comfortable then you can interact with him. I would never mean to actually just walk away. I have spent too much time online trying to teach and help kids who are having a bad time in life. I never give up on kids, never.

Sorry if I upset you as I should have got my 3 hours sleep but I also had to see about getting my computer fixed.

Thank you for clarifying. And honestly, I'm running on empty today myself.

You are doing a great service trying to help me figures things out for the sake of my nephew and our family. And from your postings, you're obviously helping a lot of needy kids. The world needs more people like you.

Well, my nephew will be here this weekend. I'm going to give the recommedations a try and sit beside him while he plays. I'll keep you posted. Thanks again for your time.

BTW, your DIS name reminds me of SNL's church lady, although I'm not sure that was your intention.

 

[Brightsy]

The advice on "ignoring" the child until he's comfortable reminded me of when my DSs were younger. My younger son wouldn't even parallel play for a long time. But my older son would still play around him. Then one day, about 4 months after his Dx and therapy started, I heard a strange noise in the living room. I came out of the kitchen to find my older son smiling.
"Mommy! Guess what? *brother* just crashed his car into mine!" And sure enough, my younger son would wait his brother to move his hot wheel then my younger one would crash his car into it! I haven't thought of that one in years... Who'd've thunk such a small thing could be so bloomin' huge?

 

[mechurchlady]

BTW, your DIS name reminds me of SNL's church lady, although I'm not sure that was your intention.

I have had this name about 8 or 9 years and it is because of my love of church and SNL.

Resistance is futile.

It will take you a long time to undo your NT way of thinking. It is weird to those of us raised in the NT way of HELLO and hugging and fussing over each other to be told to just walk in the house and plop down and play without greeting each other. Just remember that even though he is stone cold to you that inside there is a trapped person who might someday invent something or save the planet.

Time for more hugs and chocolates and snugs.

 

[DisDreaminMom]

Hi. I'm so sad reading your posts. Sounds like you are a great aunt. Can I say a couple of things, having been through this? Sounds like parents of child are embarrassed and afraid to confide in you. You are going to have to do this on your own- try to make a bond with this child despite them, not because of them.

My advice- notice what calms him down when he gets flapping and "stimming". Is is the fan? Is it running water? Maybe a flash light? Amybe make a straight line of Legos across the room and see what he does. If there is no effort from the parents to calm the child down with a dependable "thing", then you'll know why the child is having problems. All autistic children have an abnormal interest in something- you may need to help him find out what that is. Try running water when he is in the room. Does he come over and want to see it? Don't talk to him. Just have a stool nearby for him to stand on if he wants to. Turn on the lights and the ceiling fan a few times. Does he like it or get mad when it's off? Let him play with the switch by inviting him to play- non-verbal gestures are less threatening. Have a flash light or a hand held fan and play with it. If he wants it, he will have to interact with you to get it, even if he just moves a few feet closer to you. Maybe a jar of beans or some sand. Dig in the dirt in the front yard. Blow bubbles. Just keep trying. Play with it yourself- only one thing per visit. Get a small pop up tent and put it in your living room so he can have a quiet place from visiting relatives. Sit in it quietly. If he wants to come in, get out and let him have it.Get the picture?

Many of these children are PLACE specific, not people specific. My son, now 6, remembers people's houses where he was comfortable and found something that was stimulating to him from when he was just a baby. 100% of the time, he had a meltdown when leaving these places, and I did not understand it at the time, but it meant he wanted to stay and would rather be there in that "happy place".

Another thing- you somehow need to convince parents of the child to leave him with you or another trusted family member- but only after you have shown them you can make a "happy place" for the child. Children like this have no concept of time, so if you can keep him occupied playing in a running faucet for 4 hours, then let him play. These people need to get away and trust others more. It sounds like they cover up their anxiety about his behavior by overstating his abilities and underestimating his/their coping skills. All children, autistic or not, should be allowed- you got me- allowed- to develop relationships with other people. Did it ever occur to them that's why he is frustrated?

Just lower your expectations now for that "Auntie" relationship with hugs and games and know that someday very soon, with patience and love he will see you as his wonderful auntie, but in HIS way. And his behavior is not a reflection of their failures or yours, but you are speaking two different languages and it takes a while and an open mind to understand each other.

I used to have the attitude of your family, and I changed mine when a dear friend showed me what I was doing. It saved me from a hard life and frankly, it saved my son. He has wonderful adults in his life that know he'd rather have a trip to the top of the tallest building in town for his birthday, or a jar of old pennies or a set of bells for his Christmas present, things I never would have thought of but he treasures.

My son first smiled at a herd of goats at a petting zoo when he was 1. I dreaded the trip, but was forced to go by family. He laughed for the fifth babysitter (the other four got scared off by his constant screaming), uncontrollable, delighted laughter that he never did for me. I cried when I came home and heard him. Maybe your family hasn't had this breakthrough yet, but it can happen. You sound like just the girl to help.

 

[Brenle]

Hi. I'm so sad reading your posts. Sounds like you are a great aunt. Can I say a couple of things, having been through this? Sounds like parents of child are embarrassed and afraid to confide in you. You are going to have to do this on your own- try to make a bond with this child despite them, not because of them.

My advice- notice what calms him down when he gets flapping and "stimming". Is is the fan? Is it running water? Maybe a flash light? Amybe make a straight line of Legos across the room and see what he does. If there is no effort from the parents to calm the child down with a dependable "thing", then you'll know why the child is having problems. All autistic children have an abnormal interest in something- you may need to help him find out what that is. Try running water when he is in the room. Does he come over and want to see it? Don't talk to him. Just have a stool nearby for him to stand on if he wants to. Turn on the lights and the ceiling fan a few times. Does he like it or get mad when it's off? Let him play with the switch by inviting him to play- non-verbal gestures are less threatening. Have a flash light or a hand held fan and play with it. If he wants it, he will have to interact with you to get it, even if he just moves a few feet closer to you. Maybe a jar of beans or some sand. Dig in the dirt in the front yard. Blow bubbles. Just keep trying. Play with it yourself- only one thing per visit. Get a small pop up tent and put it in your living room so he can have a quiet place from visiting relatives. Sit in it quietly. If he wants to come in, get out and let him have it.Get the picture?

Many of these children are PLACE specific, not people specific. My son, now 6, remembers people's houses where he was comfortable and found something that was stimulating to him from when he was just a baby. 100% of the time, he had a meltdown when leaving these places, and I did not understand it at the time, but it meant he wanted to stay and would rather be there in that "happy place".

Another thing- you somehow need to convince parents of the child to leave him with you or another trusted family member- but only after you have shown them you can make a "happy place" for the child. Children like this have no concept of time, so if you can keep him occupied playing in a running faucet for 4 hours, then let him play. These people need to get away and trust others more. It sounds like they cover up their anxiety about his behavior by overstating his abilities and underestimating his/their coping skills. All children, autistic or not, should be allowed- you got me- allowed- to develop relationships with other people. Did it ever occur to them that's why he is frustrated?

Just lower your expectations now for that "Auntie" relationship with hugs and games and know that someday very soon, with patience and love he will see you as his wonderful auntie, but in HIS way. And his behavior is not a reflection of their failures or yours, but you are speaking two different languages and it takes a while and an open mind to understand each other.

I used to have the attitude of your family, and I changed mine when a dear friend showed me what I was doing. It saved me from a hard life and frankly, it saved my son. He has wonderful adults in his life that know he'd rather have a trip to the top of the tallest building in town for his birthday, or a jar of old pennies or a set of bells for his Christmas present, things I never would have thought of but he treasures.

My son first smiled at a herd of goats at a petting zoo when he was 1. I dreaded the trip, but was forced to go by family. He laughed for the fifth babysitter (the other four got scared off by his constant screaming), uncontrollable, delighted laughter that he never did for me. I cried when I came home and heard him. Maybe your family hasn't had this breakthrough yet, but it can happen. You sound like just the girl to help.

Dear DisDreaminMom,

Thank you for the lovely post. I read it, reread it and posted a reply. However, I must have taken too long to reply because the system said I was logged out. So here is the second attempt to post.

You opened my eyes to many things. I can forget the parents' help and I will do this on my own. I never thought of us speaking two different languages - that's a great point. He must feel so frustrated when we can't communicate.

Your suggestion of a tent is a great one. He'll be at my home this weekend - which usually causes him stress. He always gravitates to an "empty" room. However, this isn't good because he touches/licks all things he's not supposed to and uproots plants, plays with the lights, etc. So I'll try sitting with him, with the tent and some interesting toys and see how that goes.

My expectations for that auntie relationship are low and that is okay. I just want him to be comfortable around us - that's the most important thing to me. Bonding and relationships can come later. I can wait.

Honestly, most of my family members knew something was not quite right by the time he was 2. Unfortunately, when we addressed it with his parents they denied any problem and said it was because of this, that and the other. But also became extremely angry with us for thinking anything was wrong. Thankfully, after prompting by his pediatrician, he was tested at 3 and shortly after diagnosed. Since then he's been getting professional help/schooling and has improved significantly.

You sound like a wonderful mother. You opened your eyes and listened to what your friend had to say AND acted on that. For that you are blessed and your son is truly blessed to have a mother that changed her way of thinking and made his world a happier place because of it.

 

[mechurchlady]

The licking and playin gwith switches can be stimming or seeking input/information. IF he is self stimming then you can try other oral things that are not dangerous like wall licking. A chew toy for example. The danger of licking besides germs is lead paint.

You are a wonderful auntie and the kid will go far with you in his corner.

 

[DisDreaminMom]

Thanks Brenle, sometimes people don't like my honesty too much. But it's nothing like the truth to set you free...One thing to remember- there are things he wants to do alone, and one of those things he must have space for is to calm down- so----do him a favor and DON'T sit in the tent with him until he "invites" you. He comes to your house. You greet everyone like normal. Tent is in room that he likes. You make sure he is watching and make a big deal out of needed to go to your "quiet place" and go sit in the tent. He needs to be the one who decides he wants to sit in it, he has to make the effort to "ask". And when he does- even by looking repeatedly at it, THAT is the moment you get out and let him come in. Don't try to join him until he lets you know it's OK, which may be a while from now. But make it clear that it is YOUR tent and it stays at your house.

Also- I know it's hard, but go ahead and clear the room of anything he might be tempted to "get in trouble with" so that he can be given the gift of freedom from constant hovering. Ever think of it like a lab rat in a maze? Just when you find something interesting to explore, some mean adult comes running in to tell you to stop. Makes one give up the fight after a while- his sin is that he uses his mouth to learn. Granted, it's not how we do it, but plenty of animals do-horses, cows, pigs, goats, dogs, etc. He's not strange- we "normal" humans are.

Can you get baby toys that he can chew on that he can't tear up? Even a Kong ball for dogs? My dog loves to suck and chew on Polar Fleece. If you braid it and sew up the ends it's a wonderful texture and you just toss it in the wash to clean. One sure trick since he likes light- get a flashlight- needs to be a small Maglight- one that has no swallowable parts and is not plastic- and make sure he sees you play with it inside the tent. Keep it to two things to play with max. Too much choice is frustrating. Maybe get a smaller flashlight for him to take home with him so he's not so sad about the tent.

I used to be a horse trainer for many years and I'll tell you that there are some breeds of horses that need to think everything they do is their idea. If you tried to force it, or even train them in one thing too long, they will just lose it and become hysterical. Calm focus and the ability to change a plan that isn't working are the key here. If he gets upset about the tent, then turn on the water. If he becomes frustrated with water, then give him a Tupperware bowl of beans. (One note- you said he does not like noise- but often it just means he is upset that he can't control the noise- often they will LOVE making as much noise as possible with bells, whistles, xylophones, etc. This is a constant source of joy - the ability to make it start and stop on command). Help him transition from one stimulating thing to the next. This is one of the most difficult things for ASD people- the transition. Be prepared to bargain- "If you come out of the tent to go home, then you can keep this pretty flashlight!"

And you can't teach anything when a mind is becoming upset- so don't even bother. Calm, calm, calm. Because what you are "teaching" him is that you and your house are calm, feel good places to be. This opens the door to communication and bonding.

 

[Brenle]

The advice on "ignoring" the child until he's comfortable reminded me of when my DSs were younger. My younger son wouldn't even parallel play for a long time. But my older son would still play around him. Then one day, about 4 months after his Dx and therapy started, I heard a strange noise in the living room. I came out of the kitchen to find my older son smiling.
"Mommy! Guess what? *brother* just crashed his car into mine!" And sure enough, my younger son would wait his brother to move his hot wheel then my younger one would crash his car into it! I haven't thought of that one in years... Who'd've thunk such a small thing could be so bloomin' huge?

What a heart-warming story. Thank you for sharing that with everyone reading this thread.

 

[Brenle]

The licking and playin gwith switches can be stimming or seeking input/information. IF he is self stimming then you can try other oral things that are not dangerous like wall licking. A chew toy for example. The danger of licking besides germs is lead paint.

You are a wonderful auntie and the kid will go far with you in his corner.

He does have something his parents call "chewies". It seems to help him a lot. Thanks for the kind words.

 

[BeckyScott]

DS has a GigaBall. http://www.amazon.com/51%22-Giga-Ball-%2d-Yellow/dp/B0006NDCLU Same idea as a tent.

However, I certainly did NOT pay $112 for it. I didn't realize that they'd become a collector's item. Some of the reviews are bad, but I think the key is to not take it outside, which I guess is what it was intended for, ours has always been inside and we haven't had trouble with it popping.

Not such a good idea to use inflatables if the child likes to poke on things. In lieu of a tent, you could also try something like a small ball pit, one of those tent-like covers that goes on top of a twin bed, most of that stuff is easy to collapse and put away when he's not at your house. DS likes to put my collapsable laundry basket over his head.

Another thing I don't think anyone has discussed (???) is making a visual schedule of what he's going to be doing at your house. DisDreamin touched on that, the ability to willingly transition. If it's possible to lay out a plan for his day with you, so that he knows what to expect next, that might help quite a bit. You can have him help you arrange the pictures in the order he'd prefer, he might like that.

This site http://trainland.tripod.com/pecs.htm has tons and tons of PECs. If you go about halfway down the page, there are links for just about any PEC you could imagine.

 

[DisDreaminMom]

I don't mean a real tent- sorry- my idea of camping is no room service. I have, and so does DS's teacher at school, one of those wire hoop pop-up tents made from mesh. DS's is Thomas the Tank Engine and it collapses when you bend the wires toward each other. It's super light and air moves well in it. DS's teacher has a bigger version in the shape of a tube. Sorry- camping gear is off my radar- should have been more specific.

 

[Brenle]

Thanks BeckyScott and DisDreaminMom for your advice. There is a store near my town that specializes in toys for autistic kids. I'm going to head over there and see what they have.

Thanks for the clarification about a tent. I think I still have a small one the kids played in when they were young. The Gigaball on the website looks cool. I knew my nephew has a ball pit at home but I haven't seen the ball.

 

[Brenle]

To everyone who has taken the time to post and/or read this thread, thank you.

My weekend went well with my nephew. I took the advice and let him play on his own as I sat and watched. He let me play with his musical instrument and would copy my tapping. After a couple of hours, he started to get antsy but he didn't falp his hands at all.

The best part was he was HAPPY. He had lots of smiles and I could tell by his actions that he was having a good time. I made foods that I know he would eat (he is very limited) and he did just that.

I feel bad for his parents because they have to shadow him or he "gets into" things. But if they let him go on his own, bad things happen. No kidding here.

He did go into the formal living where it was quiet - but I know he always heads there. That seems to be his favorite spot to get away from it all. Ahead of time I removed everything he could get ahold of and hurt himself with or break if he threw. That also entailed removed all CO detectors and night lights. He went up to each outlet looking for it, too. He's smart!

Hopefully the next time he comes he can stay a little longer. Again, thanks for your help. It is truly appreciated.

 

[DisDreaminMom]

Glad it went well. Baby steps are progress, too. Did kid proofing house a little help lessen anxiety of adults? I know it's a lot of work, but well worth it in the long run. Yea you!

 

[BeckyScott]

I have to admit, our house is still child-proofed to a certain extent. It would very much depend on the kid. I am always on guard when we go to other people's houses, after you've done it a while you go on auto-pilot. So in that respect, you'll get it all figured out and pretty soon you won't have to think about it so much. The good part about it is if it's your own house, it'll keep you pretty decluttered.

I'm glad it went well for you. Now you have something to build on for next time!

 

[bookwormde]

Sound like a good first step.

bookwormde

 

[KirstenB]

Fantastic!! Sounds like you had a great visit. I have 5 brothers and sisters, and one of them really goes out of her way to accomodate and interact with Zoe. She and I have always been very close, and this whole experience has given me an even greater love and respect for her.