Help!! I'm trapped in my son's bedroom....

Rachael - posted on 10/04/2010 ( 15 moms have responded )

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Anyone with a 7+ Sev. Autistic boy who has been through a similar "stage" your experience would be appreciated!!! My boy is REALLY happy when I, my husband or any other "unsuspecting" visiting adult is in his room sitting on his bed (or the couch we have moved into his room, as the timber floor near his window was not comfortable...) he "puts us" where he wants us as he watches his DVD's or swings on his hammock, but when we get up to leave to go and do something like make dinner god forbid!!! he looses it! Dragging us back up the stairs crying or screaming as the case may be and as soon as we are back up there he is happy again, smiling and laughing... Of course we have "pushed through" this and ignored him and tried all sorts of things like one person leaving and then the other, but he works it out and chases us... We have sat to eat dinner with him crying and screaming the whole time until we finished and then went upstairs with him! Not good for digestion... We had complete strangers in his room the other day as when they knocked on the door and he saw them, that's where they had to be to enable us to talk.... Thankfully they were lovely people and understood our predicament but I would love to know if anyone else has been through this and what they did to stop it or did it just end in it's own time. I had a friend who's boy barked at visitors when they knocked at the door and cowered and growled at them when they came inside and he grew out of it... Similar age and feels like a similar thing, but would be glad of any advice to "speed" up this stage he is going through! His Grandfather has MS and cannot make it up the stairs as much as he crys and drags on his arm to join him up in his pad! Some Saturdays I would like to be able to plant some tree's, instead I am looking at them waiting to be planted, from the balcony window in his room.... :-) I'm glad he loves us to be with him but would like a bit more balance. Thanks to you all who reply!

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User - posted on 10/10/2010

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Hi Rachel,

I know of a boy who did this...the family essentially "moved" into his room until he fell asleep....it lasted around a year...then he started to attempt to push more furniture in the room...his bed, the couch, a tv, and a couple of other things were moved in...so, it took some time before mom and dad found a therapist that they could all work with and this helped a great deal.

The first thing they did (after lots of getting ready through social stories) was remove the tv from the home. This was hard because all the kids liked the tv...but, so did the boy with ASD...so, TV was GONE (he would have attempted to get it back in his room had it been in the house)...then they moved the couch back to the living room...then they put orange tags on everything that stayed in the livingroom...TV came back with the orange tag...if it went back to his room, it would leave again...so, they worked through a tag system where he would only have blue tags in his room and then he could only have people in his room if they had a blue tag..and then they reduced who would be wearing the tags...so it went down from everyone with the blue tags, then his two siblings dropped their tags, then dad and then Mom's tag became orange OR blue...so if she was wearing orange, she was showing living room time, but if blue, she would go in if asked (dad also had this as well, but since mom was a stay at home mom, she was the one who was at the centre of this particular drama most of the time). He also had one "invite" tag that had a thirty minute time limit..

So, this boy was/is quite high functioning and he and the family worked together with the therapist...it took a while for it to gel, but the tag system seem to provide a visual cuing system that this boy could understand. As well, his room was very much his space, and he felt most comfortable there. The family worked at "streamlining" the other rooms to take away a lot of the items that were providing way to much stimulation (he identified that there were too many family pictures always "looking at him" and a print of flowers...he said he couldn't stop counting the petals going around and around...this came out later as they progressed...so the living area was essentially stripped of decorative touches...)

Good luck,

Sheila

Judi - posted on 10/07/2010

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Kitchen timer? so that your son knows that you'll come back - set it in his room for 1 min and say I'll be back when the times up. when it dings go back in. Extend the time each week (slowly).

Becky - posted on 10/06/2010

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Wow definately a hard battle to fight. I have a son with pdd-nos and have similar occurances. His are not to the extent of your son's but never the less my son directs me to where he wants me to be and then throws a fit if I move. Lot's of people will tell you, just don't give in, but what many people don't understand is this type of child's inability to control his tantrums. I have many family members that tell me just don't give in eventually he will stop throwing the fit, and you know as well as I do that after they leave the fit continues, and continues and continues. So for peace of mind and to for us to remain without having to have hearing aids before we are 50 we give in a little. This does sound like your son definately is seeking controlling behavior since he has so little control of the way his body makes him feel. Have you tried having him "help" you with heavy things like pushing the laundry basket around the house, picking up 2 liters and carrying them to various places in the house, or something to that nature while you are cooking dinner or whatever. I don't know the extent of your child's willingness to help, but my son will sometimes and I stress sometimes drop the obsessive need for attachment if I give him something heavy to help with. I have also found that if I place the Trains(my sons biggest obsession) in the litchen floor, albeit that he is in the way and under my feet, I can often get him to play while I do things. However some days are still really hard for us and I completely sympathize with you. I am pretty sure we parents who are chosen to have these unique children have some kind of prequalifications imbedded in our DNA that gives us the patience and understanding of these children. Good luck to you and I hope some of this possibly helps!

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Judi - posted on 10/14/2010

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Hammocks: you can make your own with a piece of lycra (about 1.5 x1.5 meters) and the metal or plastic rings from a yatching store. loop the corners thru the rings and then tie and then sew them closed.this makes them a cross between a hammock and a trampoline. then you just go crazy and get different colours and winter ones that are polor-fleece and the brown ones are trees in the jungle and the green ones grass and blue water ....and then your husband bans you from going to the fabric store....

Esther - posted on 10/12/2010

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My son is 4 and just started doing this too...I don't know what to do either he won't let me eat or cook sometimes and wants me in ONE particular spot on the couch. It's horrible, I don't know if I make the situation better or worse by doing what he wants. I cry sometimes because it's really horrible when we have family or friends over. I'm going to try a few of the techniques they listed in the other posts. Thanks for sharing I've been struggling with this too. Best wishes to you and your family on your journey.

Michelle - posted on 10/10/2010

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thx :) I will check an see if I can find one for her.. Also my daughter loves to help with heavy items! She is so happy to do it, I think our children even tho they have dissabilities are so much stronger than children that do not.. Dont u think!! ?? lol my daughter is 4 and she amazes me with her strength .. omgosh! I am afraid sometimes she is going to hurt herself w this! She also has a photographic memory. I firmly believe where they are lacking or behind they make up with there special abilities elsewhere!! To Our Super Hero's lol.. :)

Rachael - posted on 10/10/2010

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Hi Michelle, I got it years and years ago from a homeware shop. When the OT suggested it, it was the first time I got it out of the wrapper would you believe!!! I'm sure you would be able to get one from a place that sells outdoor furniture, BBQ's etc.. I'm in Tassie, Australia so I'm not sure I could suggest a place that ""you"" would be able to get one from... Maybe post another request to people in your area?? Mine is material like a cotton/canvas in great bright colours, hot pinks, oranges, blues etc. He loves it!

Michelle - posted on 10/10/2010

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Where did u guys get the hammock? My daughter is having some major sensory issues as well as ur son,. she does this to us too.. How can I get the hammock? I am sorry I really dnt have any suggestions for u. other than jus doing what u can do to get thru it, I think eventually they do get better if u stick to ur guns and can stand the screaming. They just get used to there patterns and do not like any change in there environments. This is how my daughter is. I hope for the best and I hope for u he comes out of it soon.. lol :) They r soooo smart !!

Rachael - posted on 10/09/2010

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Yep got the hammock going and I'm putting his name up for a place within Cirque du Soleil. It has not calmed him but he swings on it from one end of his room - it's attached to steel exposed beams in his room - to the other nearly touching the beams with his head he's so high :-) He spins on it all sorts of things... quite something to see!!! My daughters asking for hooks and chains in her room,... he he....

Angela - posted on 10/08/2010

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wish i could help but i am stuck with spongebob at the moment.. our son is 3 and has PDD, NOS he is in preschool now from 8 til 11 and stuck in the routine of graham crackers and spongebob when he gets home.. i have put other things he loves on t.v. to be on when we walk thru the door but he wont have it.. has to be spongebob or else.. Good Luck getting outta ur sons room.

Judi - posted on 10/08/2010

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Can you put a sensory hamock in his room, it's just 4 hooks in the ceiling (in the beams not the board) and some metal rings and hooks (from your local hardware outdoor toy section) and lycra tied onto the rings. Check out the room at your OT's for ideas. Or make the spare room a sensory room at home - if it doesn't work then at least you can still chuckle to yourself at the look on the handymans face when you say "yes, we need some hooks and chains in the ceiling of this bedroom please"

Rachael - posted on 10/07/2010

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Yes we have a little dog who loves him - adores him, but it still doesn't fit as "company" in this respect and we are still chased for this even if Kippy is in the room with him as he often is. I like the timer idea, I'll give that a go... We have tried a timer for other things in the past and it hasn't worked but stranger things have happened and I have tried things for a particular reason on something and it hasn't done what it should then used it for something else and it has worked so hey...! Worth a shot! Brought some (about 50) of his books down and put them on the bench while I cooked last night and got about 30 minutes out of him!!! He had sensory room yesterday and this always makes him more "level" so not sure if it was the books or that, but I'll try again tonight. Thanks Becky for the train idea, I'll use his books! No where on the bench to put the dinner plates, but we will work around that!!

RoseAnn - posted on 10/07/2010

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We have trained our pet dog to stay with my son to keep him company. It has quite satisfied him.

Rachael - posted on 10/06/2010

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Thanks Becky, He's a smart little man and is onto the distraction thing and yes the weight carrying works at School when they get him to carry books ( in particular - loves his books ) to the library, but for some reason when I request him to do it at home, he's on to me!!! If I'm in the kitchen I will get him to put away cutlery or if I'm washing up he will grab the tea towel and stand there in order to hurry me up "come on mum, dry your hands and come with me "again".....He is patient and will wait in this situation for me to finish the washing up, but if it happens to be that I'm upstairs and want to leave to do something, this is when it all falls apart! Your right it is controlling, I'm sure to help him with an anxiety he is obviously trying to deal with and your right it does continue when they are long gone and I do get "don't give in comments" which are not the answer on this one - believe me I have tried...... If we have been chosen for this role someone is going to cop it when I finally make it up there... :-) Thanks for the idea about the trains, I haven't tried this and it may help at least while I'm trying to cook dinner for my family... I'll give it a go tonight. Thanks again!

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