what would you do? bad OT and ST

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my 5 year old has been seeing his OT and ST since Oct last year. Lately they have been giving me nothing but bad reports about his behavior. He is normally a VERY well behaved boy and eager to please. I had no complaints with anybody with him ie school, social skills groups, or family members. However, he is very controlling, rigid, and overly anxious and that can effect what can look like a behavior problem. First off, I HATE his OT, she has no patience for us and lacks understanding or sensitivity. She told me when she met him for the second time that she doesn't think he is autistic. So that is her first strike, she doesn't think my son has a problem, she just thinks he has sensory integration dysfunction. He has OT and ST combined for 45 mins twice a week. She is working on handwriting with him right now, his worse subject, he absolutely HATES writing. When he comes back from the weekend and tries to write something and messes up, she immediately says "what are you doing?! !!" He shuts down after this and his behavior is then negative. He refuses to do anything for them after he shuts down. Their explanation for this is that my son wants everything his way, because he can't get his way, he acts up. Which is somewhat true, he is very rigid and controlling. On the other hand, I don't want his self-esteem to be diminished by these idiots. I don't want to completely yank him out of OT or ST because then we have to be on a year long waiting list with someone else. I tried talking to them and they just think it's behavior with him and I should be tougher and they aren't backing down. I don't know what to do, I don't approve of how they treat him, but part of me feels like sometimes he needs it to make him realize that he can't always get his way. I'll give you an example of how his controlling behavior effects our home life. He is taking a shower that he is obviously enjoying, it's been a while so I come in and shut the water, because he is not done, he flips out on me and starts to follow me around and say negative things and whine and cry until i apologize for not asking him if I can turn the water off first. I feel like since I'm his mother, I should be in control, but most of the time he wants to be in control. The OT and ST feels like if I don't stop his controlling behavior it will get worse when he's older. That is why I haven't yanked him out of therapy, maybe he needs this toughness from them that I am lacking? what would you do?

Is there any way you can request another provider without quitting? My son sounds very similar to yours. He's 9, and he likes/needs to be in control. He has said to me before that I need to apologize for disciplining him when he wasn't listening, etc. He's not an easy kid. However, I do believe that if your son saw OT/ST as a fun thing, he wouldn't put up as much of a fight, and getting yelled at for messing up certainly doesn't help at all. That would make me upset too. I don't blame him for shutting down.

I probably would search out another ST/OT, but continue to go to her until you find one. My son is exactly the same way. If you ask him "what are you doing?" in a condescending way, that just makes him feel that he is getting in trouble for something when he is trying his best to do what is asked, and it's hard for him to deal with that. It would be hard for anybody. With my son, negativity in any form doesn't go over well at all, either does changing up on him without warning. The shower thing is a perfect example. If I were to turn off the water off on him he would melt, but if I say I'm shutting the water off in 2 minutes, or say I'm counting to 10 and the water is going to be turned off, he usually is fine with that because he knows it's coming. If he asks for 5 more minutes tell him OK...then say 2 minutes, one minute, water off. You don't even have to wait that long. He won't know what minutes are.

Your child is 5 years old and still very young, so is behavior is his age too, and his developmental level, and his autism. You have plenty of time to teach him that the world doesn't revolve around him, and IMO right now at this age there is nothing wrong with giving him a little control. He probably needs it to get through his day. Choices work for my son. Do you want to play with your video game? then you need to do this...It's your choice. I'm in control, but he is too. He has the choice to do what is expected, or experience the consequences. Isn't that what we do every day as adults? Try to find some strategies that work for you and ask your therapist to do the same. Explain that coming at him head on is counter productive and does not facilitate learning. Give them some strategies that work for you as an alternative, explain it plainly and ask them to please try a different approach. Make sure you are not criticizing them or making it personal (which is easy to do, especially when you are frustrated), and don't worry about what they believe his diagnosis is. Concentrate on the work they are trying to do instead despite the diagnosis. Learn to stroke and manipulate. It sounds awful to have to do that, but you gotta do what you gotta do.

I find it interesting that an OT, who is trained to deal with kids with sensory issues just assumes that you aren't a tough enough parent, especially with a 5 year old. They, of all people, should understand.

Good Luck!

thank you so much for your response, advice, and understanding. it's so hard finding someone that understands what im going through. half the people i talk to say i'm overreacting and they are "professionals" and know what they are doing. the other half is appalled at how they treat him and tell me to get rid of them right away. i went to his neuro appt today and the neuro was also appalled at the things i was telling him about the stuff they said to him and why he is shutting down. he actually told me he will call them himself instead of me talking to them because if i say something it may just look like i'm telling them how to do their job. im sooo happy the neuro sided with me. i totally agree when you said that he has plenty of time to learn life skills, it's not their job to teach him. they are just being immature and picking fights with him by being so negative. i've really never met a group of people that were so negative in my life, esp therapists. again thanks for the support.

I'm glad your neuro will speak to them. It sounds to me like THEY are the ones with a control issue.

I get very sick of people thinking that my children would be fine if only I was stricter. I'm amazed that someone who's trained to help kids with special needs would be so insensitive to them. I love our OT and SPL, they are both a huge help in any way I ask them. I'm not a huge fan of our developmental pediatrician, because she tends to be very curt with my son. I'm confident in her abilities, but her "bedside manner" stinks.

I know my in-laws and some people at our church think I'm "coddling" or something when I give my kids a countdown to transition to something else. Sometimes I do it when they are doing something they're not supposed to be doing, for instance, playing with the pool table in the church youth room. I give them two minutes to finish up, then we're done. It's not that I'm giving up MY control, it's that I'm controlling the situation in a way that makes them feel like they've had a say. If I were to come in, and haul them out of the room, there would be a 30 minute meltdown.

Anyway, it sounds like YOU understand what your son needs. I'd suggest finding therapists with bettr attitudes.

that's exactly how i feel about his OT, she has a freaking control issue!! she is very smart but she should NOT be working with special needs children. im surprised no one has reported her yet. it's just really hard in our town to get any services, once place just shut down and the other ones have waiting lists. i hope his neuro does call them though, he tends to be a slacker, even though he's an awesome doctor. i really don't fancy my kid's pediatrician as well, similar to your dev ped, her bedside manner stinks! she is very critical but i stay with her because she is smart and supportive.

It's really hard to deal with people who think you coddle your child. They have NO idea. I have a renter in my basement that constantly spits out comments like "you get away with murder", "you get everything you want" la la la.... It's really frustrating because people just don't understand. They see our children as NT and their not. My daycare provider actually told me to have my 7 year old son to write 25 times I will not say a bad word. I almost rolled my eyes right in front of her. Like THAT is going to make an impression. I told him the word was bad, now he knows, he hasn't said it since...that's the "rule". (I wish all behaviors were like that )

Hang in there! You will run into these people everywhere you go. Do the best you can with what you have to work with. One thing you can control is the support you can give to your child at home, and the better you are with that, the more he will be able to deal with people like them. Don't ever feel you are overreacting...you are protecting your child and you're a good mother for doing that.

i can so relate to people criticizing us and telling us we need to be stricter. my husband's sister, who has a severely autistic child (of all things) told me my son wasn't potty trained by 4 because i took too long to train him..ugh, how ignorant. little does she know i've been trying since he was two without any success.

My son is still sleeping in a pull up. He does things when he's ready. There is not point in trying to potty train when he isn't ready so why stress everyone out? It's not like he'll go to college in a diaper.

When my son was in preschool, the child find people kept telling me to take his sippy cups and straws away and force him to drink from a cup. He was 3. Who cares? He has issues way more important to work on, but the pushed and pushed for that. He can drink out of a cup now, but it's hard so I give him a straw. He can drink from a straw for the rest of his life for all I care. People are so dumb

malya2006,

My mother and father TO THIS DAY openly acknowledge that they had it EASY! I have never been bad, etc... I HAVE had "odd" requests/actions though, etc... STILL, people have LIED about me! It is like the bank(that interestingly is now SHUTDOWN but there message stays) that claims I was 90 days late on an account that I NEVER had any debt on(That has hurt my fico score a LOT!), or the company that says I hit a woman in a state when I was about 3000 miles away from it, and never even TOUCHED a person with the car.(Increased my insurance costs) At school, people said I started fights, or was the first to talk, though I was a QUIET pacifist!

People will LIE, EVEN in front of the kid! They believe that THEIR word trumps anything the kid could ever say. SSo keep that in mind!

Here is the interesting thing I've noticed with AS: the more you push, the more you stress the child out, the more controlling he becomes. It's a reactive response. The more you give choices, warnings, and explanations, the easier it becomes for him to adjust, and the less controlling he will be.

mommyjones, i can relate. when i bought my son for his 4 month check up, she gave him a shot on his leg and saw he had a pull up on and she said she couldn't believe it. i said, "we're trying.." and she said, "i don't believe you." i was sooo hurt, i went home and cried. that was before his dx. when i went back to her because i wanted to seek a dx, she had the nerve to say.."oh yea he looks like he has pdd, when he was born he wasn't looking at me curiously like most babies do." i wanted to smack her! potty-training my son when he wasn't emotionally ready was useless. all it did was put more stress on him and myself. like you said, he will be ready when he's ready, and there's nothing you can do to change it. the only thing u can do to help is make it a pleasant and normal experience for him.

DW i agree completely, his dumb OT and ST thinks they can break him, haha nice try, it's just going to get him to hate therapy and shut down even further. we have an appointment with them tomorrow, i hope to God the neuro already talked to them and they understood. wish us luck!

Good Luck with your appointment and be strong! The judgement of people will never go away, but trust me you'll get used to it and learn to ignore it. These kids have their own way of developing, and it's better to give them slack than to force things. I refuse to spend the rest of my life fighting with my son. He has his challenging behaviors but he's a happy kid and it's because I'm patient, and I work around him. I don't come at him head on. I teach, not punish.

I don't care who you are, doctor, special ed teacher, autism expert, you don't know what it's like until you have a child of your own with these needs. Try not to let these people get to you. Like I said, enjoy your child. He won't go to college in diapers, he won't control the world forever, he will mature and grow like all other kids, it just may take some things a little longer than other kids. On the flip side, if your son is like mine, there are things that are way advanced too. Their special...

Hang in there!

with that last post, i meant his 4 year well-visit not his 4 month visit btw. anyways, the ot and st class went great!! ! i am soooooo relieved! he's finally out of his behavior/sensory/dazed out stage. it took almost a month. now he's eating, more attentive, answering questions, and asking questions appropriately again. this is weight off my shoulder, i couldnt even sleep at night because i worried about him. things are pretty good again, until the next stage of course, it's like an up and down roller-coaster ride.

Sounds like your son is in control in your house. All parents want to think their child is well-behaved even if they're complete brats. I think you need a reality check. Yes Autistic kids like their routine and like things their way but they need to learn that life doesn't work that way and that they have to do as they're told. It's necessary for them to be able to function in life when the parent is not around to protect them from those horrible people that expect them to behave within socially accepted norms.

It's a constant battle but you have to be strong and dominant. It's a bit like having a German Shepherd or Rottweiler you have to dominate them and make sure they know their place or they become a liability and dangerous to themselves and others.

To not push them to me is tantamount to child abuse because you are consigning them to a life of functioning at the lowest level possible. (I saw your comment on another thread today and disagree strongly) To me you are the child abuser and your child should be taken away from you. If you don't like this comment don't go around saying it to others. I'm sure all parents on here have their childs best interests at heart and everyone has different ideas as to what that is.

If you don't like being put in your place don't go doing it to others. Your comment about pulling the legs of ants indicates that you, as an NT and not an autistic, have a tendency towards psychopathic behaviour.