Meeting with Speech, Occupational Therapist (OT) and PT

Discussion in 'General Parenting' started by Dara, Jun 27, 2007.

  1. Dara

    Dara New Member

    We met with a speech and therapy center yesterday. Everyone, doctors therapists, us is in agreement that Sammy needs more speech and possibly some Occupational Therapist (OT). The school district is testing him at the end of july and doesnt begin therapy until school begins. In toddler time that is forever and a day away. We met with these people and at first I really liked them but the more I thought about it the worse I thought about it. They were obsessed with sensory issues. To clarify, Sammy officially has: Obsessive Compulsive Disorder (OCD), Anxiety, Speech delay, develpmtl delays, and behavior disorder not otherwise specified. First I said, did you leave anything out? Sammy is obviously quite quirky. We want to focus on the purpose at hand and get him talking properly and clearly, and teach him functional things like how to hold a spoon and fork the correct way, work on his fine motor skills things like that. They were so focused on sensory that nothing else will be accomplished. Brushing him for 30 minutes before we go out is NOT going to make him listen better and rage less. I am afraid if we do this, Sammy is going to be quite oppositional to do things like hold the spoon correctly...and they are going to say "Oh he is on sensory overload lets put him in the swing for 30 minutes" It will ruin everything we have gained behaviorly. Not to mention that inusrance will cover $30.00 of the $975.00
    I dont know what to do with him anymore! :hammer:
  2. smallworld

    smallworld Moderator

    Is this speech and therapy center going to be providing speech therapy in addition to Occupational Therapist (OT)? My understanding -- and I'm not an expert on Pervasive Developmental Disorder (PDD) -- is that when communication is improved, the child becomes less frustrated and raging will lessen, paving the way for new skills to be learned. The same holds true for Occupational Therapist (OT). When the child's sensory overload is reduced, he becomes less anxious and can interact better in the world around him, again paving the way for learning new skills.

    I hope SRL checks in here. I know she will give you good advice.
  3. SRL

    SRL Active Member

    I'm sure that had I gone to a preevaluation meeting expecting to discuss primarily speech only to be met with Occupational Therapist (OT), I wouldn't have been too thrilled. However, in their support, we didn't get a full private Occupational Therapist (OT) evaluation until age 7 and if there's any one thing evaluationwise that I regret not doing earlier, it was this one.

    For children with this cluster of issues, I don't see either speech or Occupational Therapist (OT) as being more important, but both being equally important in making forward progress if sensory issues are present. A child who is out of sync in the sensory area is less likely to be able to tune into therapies and more prone towards behavioral problems. Finding the right combination of sensory input at the right times in their days can make HUGE differences in outcomes. We used brushing only for a short period to help him settle down at bedtime, but it was a big help when he was asking for it. Swinging/spinning was his thing and it was amazing to see the difference in him after 15 minutes on the therapy swing we have downstairs. In his early elementary years swinging/spinning was the last thing he did before going to school and the first thing he did when he got home. While filling out the Occupational Therapist (OT) paperwork in advance of the evaluation it asked if there was any physical activity that he liked more than others and it was then we realized he'd go out and swing alone on the swingset for 20 minutes and come in feeling really good. Had we not gone through the evaluation process we would likely have gone on thinking of swinging as just play and not gone on to using it to his advantage.

    I am not saying that speech isn't important, nor am I saying that Occupational Therapist (OT) is a cureall. But what I think that they are trying to tell you is that it's possible that a child who is more regulated in the area of sensory integration will be probably be better able to participate in interventions.
  4. Dara

    Dara New Member

    Sammy has never been diagnosed with sensory issues. In fact the neurologists, the psychiatrist, his therapist, and his teachers think that he is ok in that area. The thing with Sammy is that he likes to be in control. He does not like to get dirty. He is very particular. I think that sensory sensitivity plays into his Obsessive Compulsive Disorder (OCD) but I have seen kids with sensory intigration disorder and life can be crippeling to them! Sammy knows how to manipulate people to get out of what he doesnt want to do. If they are focusing on the spoon and he is screaming about it and they put him in the swing, they will never be able to teach him how to hold the spoon. He will then scream everytime thus getting out of doing this activity. As for the Pervasive Developmental Disorder (PDD) diagnosis, Sammys therapist and pediatrician do not agree with it. He did take a test I think it is called CORE or something to test for Autism and the norm is a score of 34 and Sammy scored 32 so he is Barely under that umbrella. He is not in the middle as the psychiatrist suggested. In fact yesterday Sammy was observed in school by his therapist. He told me that had he not known sammys deficaincies, he would wonder why he was observing him. He was smothering shaving cream on his tummy..he wouldnt let anyone else put it there..he was playing with the other kids. Tantruming over normal things that 3 year olds cry about... Both his teacher and therapist said had the psychiatrist seen him there, it would be a completly different diagnosis. THe thing with Sammy is that he has many quirks. There are a lot of things about him that baffle the proffesionals. He really does not fit into any category. Our focus at this point is to try not to ruin his positive behavior. We want him to hold a spoon and fork so he can use them.(he doesnt let us help him and when he cant get the food on it he goes crazy) We want ro work on his language. He is a child who will come as high as he is expected to and no higher just because he doesnt feel like it. If he is not expected to speak clearly, he wont. I think, putting him in a swing when he is supposed to be doing another task is going to reinforce his manipulative defiant behavior and we will be back at square one.
  5. smallworld

    smallworld Moderator

    Dara, with all due respect to the fact that you know your child best, I think you should consider the fact that at 3 years old and with developmental and speech delays, Sammy is unlikely to have the cognitive skills to be as manipulative as you say he is. Manipulation takes forethought, planning, organization and impulse control. It is much more likely that with his symptoms, Sammy is reacting from anxiety, frustration intolerance and lack of impulse control. You should take a good hard look at Ross Greene's The Explosive Child and Treating Explosive Kids.
  6. Dara

    Dara New Member

    Sammys delays are mostly speech and motor skills. His intellectual skills are off the charts. He has an a amazing memory. We have to do something or go somewhere only once and he will remember forever. He is like his father in that sense. I always say that I married the human encyclopedia. My husband remembers everything he ever read, said or did. ITs like he has a rolodex in his brain. Sammy is exactly the same with that! His neurologists, pediatrician, therapist, and teachers all agree on how manipulative and calculating he his. That is one of the things that baffle everyone. If you sit and watch him, youcan see him in action. Some of it is so obvious that it is pretty funny to watch. We have been with 3 different neurologists and all 3 have noticed his manipulations and have commented on it. Sammy is one of those kids who enjoys a good battle. If he has noone to battle with he will battle with himself. That is why dicsiplining him is so difficult. He takes it as a challange and he loves it. Unfortunatly, the one neurologist who I like the least was right on when he said "Sammy is just a cranky kid" I know he has all of these other issues. I have worked with young children most of my adult life and never have I met any other like him. Every proffesional that we have been to have said the same thing. Most of these are people who have been in the field since the 70's and 80's and are amazingly good at what they do! I understand what you are saying. It is hard to imagine a young child being so calculating. I probably wouldnt believe it eithe if I havent seen it! Sammy is a unique little boy that has everyone baffled. The norm of what to do with a child who has these issues just dont work with him. Therapy doesnt transfer over to us. Everyone has their designated role according to Sammy. FOr instance: Daddy is the only one who can push him in the swing. If I try he goes crazy. His therapist is the only one who can use the toys with Sammy that is used durring therapy..If we try, he goes crazy. People cannot deviate from their roles in Sammys mind. It cannot change. That is why we are so worried about potty training. FIrst of all Sammy will use it as a weapon and secondly, His therapist will teach him and it wont transfer to us even if we are there helping. Sorry this is so long and it isnt that I am not listening to what you are saying because I am and I do take it to heart and look into all of these options. Its just Sammy often leaves all of us with our mouths hanging open and us scratching our heads!
  7. smallworld

    smallworld Moderator

    Cognitive skills aren't intellectual skills. Cognitive skills include executive function skills, language-processing skills, emotional regulation skills, cognitive flexibility skills and social skills. No matter how bright the child is, I can imagine that most 3-year-olds -- even those without disorders -- have deficits in these areas. Those with disorders have even more difficulty with these skills and frequently end up melting down as their maladaptive way of coping.

    I don't see the example of Sammy wanting Daddy only to push him in the swing or therapist only to play with certain toys as manipulative. Some 3-year-olds without disorders also have these very strong preferences and do outgrow them. In kids with disorders, it's a manifestation of anxiety or difficulty transitioning or having a very set way of ordering the world (very common in Pervasive Developmental Disorder (PDD) kids). Again, it may be a maladaptive way of coping and can get better when the behavior is understood and worked with.

    I personally would leave any professional who calls a child manipulative. I think that shows a very basic lack of understanding the deep issues that contribute to why a child behaves the way he does. My own son has been called manipulative by several professionals, and they are no longer part of our team. J's psychiatrist has told us on more than one occasion that it's futile to figure out whether he's manipulating or not. It's far more important to understand why he's behaving the way he is (look at those cognitive skill deficits), empathize with the situation and then work WITH him to find a solution that is acceptable to both him and us. It's time-consuming and challenging, but well worth it in the end because we are making progress with him.

    FWIW, crankiness or irritability is frequently a manifestion of anxiety or depression in young children. It needs to be taken seriously as a part of Sammy's symptom complex.

    The only other thing I would add is if you keep doing what you're doing and it's not working, you may need to look at another way of doing things with new professionals on your team. Good luck.
  8. SRL

    SRL Active Member

    I agree with smallworld on manipulation in a child this young. Behaviors that appear manipulative frequently have other reasons behind them. While the behavior may appear the same, the internal motivation is very different between a child who is purely manipulative vs. one who for instance has an extremely high need for routine.

    I wish I had a dollar for every time I thought difficult child was being manipulative when he was young which I later realized were linked in some ways to his neurological makeup. Personally I'd also be shopping for a new medical specialist if I had a child with this degree of developmental issues who was chalking behaviors up to being primarily manipulative in nature at this young age. Most of the time behavioral problems to this degree have a root cause in a child that comes from a stable, loving home.

    If I were in your shoes I'd do a private Occupational Therapist (OT) evaluation for a number of reasons:
    1) No amount of input from professionals outside of Occupational Therapist (OT) can replace the opinion of a reputable master's degreed Occupational Therapist (OT). A professional in the field will see subtle things that even observant parents or other specialists will miss.
    2) I wouldn't trust a child psychiatrist's opinion on my child's sensory issues any more than I would trust a speech/language pathologist prescribing medications.
    3) Sensory issues tend to ebb and flow--what looks like a non-issue now can flare up tomorrow to sky high levels. Age 3 is an excellent age to get a baseline private evaluation in both motor skills and sensory issues from a fresh set of eyes. We usually recommend a thorough Occupational Therapist (OT) evaluation for any child this young with difficult child issues.
    4) You may find some unexpected help even if you aren't looking for it in the area of sensory. For instance we bought a weighted blanket for difficult child but myself and my two other kids all use it when we have trouble settling down at night.
  9. Dara

    Dara New Member

    I think you might be misunderstanding me. I am not saying that only daddy swinging him is a manipulation. That I am saying is he is very specific in roles. Everyone has their roles. I also am not saying that his manipulations are extremly deep. They are very obvious. He is 3 after all. You can see it in his eyes what he is doing. The thing you have to understand is that we have been to MANY proffesionals. We have had many opinions of people in th neurological field, many therapy evaluations of different places and people that are not connected. psychiatrists and pediatricians. I do not trust a lot of these people easily. There are about 3 people I trust and those are the ones who know Sammy the best. These people are all in agreement about how Sammy operates. The thing is that noone can figure out why. Bipolar is one of the suspects but will not be determined until years from now. Obsessive Compulsive Disorder (OCD) is a definate, anxiety definate. Pervasive Developmental Disorder (PDD) was what he was put under because he didnt fit anywhere else. He was tested to see if he would fall under the Autistic umbrella and he is on the line. The psychiatrist did not test him for this. NOONE agrees with the psychiatrists report. Mostly because he did 1 test and the rest of the info was taken from us 2 months before the appointment. As we all know that 2 months in toddler time is like years developmetally. It is very hard to test someone who is anxious around new people. If he saw him in the school enviornment the results of his test would be different. He is happy and social at school. He plays in the shaving cream and water under his control. I do not argue the fact that there is something playing a role in his behavior and everything else. But he is indeed manipulative he has the need to be in control of every situation and cannot handle not being in control. I understand that there is a cause for this. Noone seems to know what it is. He is in fact manipulative and quite calculating about it. It is done with screaming and violence and in order to control a situation but it is manipulative none the less. For instance: When he used to throw head banging tantrums all of the time we were taught to not make eye contact due to that being a reinforcer. We would literally turn our heads away and Sammy would move so he was right under your feet tantruming so that you were forced to look at him. He has done that since he was 1. It is obvious what he is doing. At this moment I cant think of the better examples of him manipulating but he does and he is good at it. I know my child I also know there are reasons he does this.
  10. SRL

    SRL Active Member

    Dara, you're the parent and you have every right to choose whatever therapy you feel is right for your child and to ignore the recommendations by professionals as well as those of us here that you aren't comfortable with. No doubt many of us here have done it many times. Due to your child's developmental history including motor skill problems especially I doubt that you'll find a lot of people here suggest skipping a baseline Occupational Therapist (OT) evaluation though. Maybe looking for a therapist you're more comfortable with would be a better idea. Most parents whose kids have been through Occupational Therapist (OT) for any length of time would see it as a postive that a therapist would be using whatever equipment is at her disposal to achieve the goal but if you feel differently then you need to find someone who you're more comfortable working with.
  11. Dara

    Dara New Member

    We will find Occupational Therapist (OT) and speech for him. We cant afford this place not to mention they arent going to focus on the needs at hand. A big part of our problem is we are running out of funds and insurance wont cover any of it. We are doing all that we can and taking him everywhere we can but eventually when you pay 20 thousand per year out of pocket, the money will run out! We have done that for 3 years and are desperatly trying to find a place to help us and one we can afford. Luckily the ABA place we are at is more concerned with Sammy than money. We will probably have him tested there again in the next few months becuase they are quite thurough. We are waiting for the school district to finish those tests and see what other tests we will need to do with him. We need a place who will be willing to work with him through his defiant behavior to get the task done. He is not willingly going to work with therapists. He fights it to the death! This is a child who would rather scream for hours than take one step. He is stubborn and strong willed. He wants to do it his way which isnt always possible.
  12. Babbs

    Babbs New Member

    I can hear in your posts your pain and frustration. My heart goes out to you.

    A few things I suggest you consider. First - you mentioned that Sammy has significant language delays. Considering this, could it be possible that what you interpret as being manipulative behavior is his way of attempting communication due to a lack of language skills? Most children with severe language delays have "behavior problems" related to their inability to communicate at their developmental level. Developmentally 3 year olds do not have the cognitive processing to be so highly manipulative. They do understand cause and effect however - and if certain behaviors got them what they wanted once, then yes, they will do those behaviors in order to get what they want again. That is not manipulation - that's simple ABA.

    Secondly - children with sensory processing problems often have motor delays as a result of the processing problems. If you react to the sensory stimulation in your world differently than most people, then your motor development will occur differently. Instead of viewing the sensory processing treatment as "wasting time" why don't you view it as building a good foundation in order to build good motor skills on top of it?

    Finally, for some children with sensory processing issues, every new experience is an opportunity to be bombarded by uncomfortable and painful stimulation. So I can easily see why Sammy wants people to stay in their "roles" as you put it. He has been able to get his sensory system to tolerate that single particular type of input and if someone else does it, it's still a novel, unfamiliar experience for him sensory wise. No two people do anything alike - so why would the sensory experience between two people be identical? This can create distress and anxiety in an already overwhelmed system.

    Yes, two months in toddler time is a long time. However, getting a good foundation now to build motor and language skills on will help Sammy more in the long run then having to backtrack later on and perhaps spin your wheels for months or even years without the good sensory supports.

    The best of luck to you and Sammy. Sammy is very fortunate to have concern parents who identified issues early and are seeking help and support.
  13. Dara

    Dara New Member

    Sammy has always been able to get his point across even with no language. Now he is speaking in small phrases. We are working on cleaning it up so we can understand better and putting more words together. When he speaks, in my mind, I hear the whole sentence he is trying to say. If that makes any sense...
    I would not classify his language delays as severe. They are certainly delayed. He is indeed manipulative. I know that people do not want to believe me in saying this. I know that everyone is telling me here that i dont know what I am talking about. But, everyone who knows Sammy and who has evaluated him all agree that he is manipulative and calculating. These are very basic moves and tactics. He is not sitting somewhere in a lab plotting his next move.
    Sammy DOES NOT have sensory issues. He has been tested and does not have sensory problems. He is sensitive to sounds and sights around him. However, he likes loud noises. The louder the better. He likes to do things on his terms. He doesnt want to touch something you say to touch. However, on his own terms, he will go touch whatever it is.
    As for the therapy, Sammy is resistant to doing what you ask of him. He will scream and tantrum and cry. These therapists at this place we went to said that when a child acts that way, they will put him in the swing for 30 minutes. The session is only 50 minutes. So, if Sammy is in the swing for 30 minutes and screams for about 5 or 10 minutes, when do they teach him how to use the spoon properly or how to use the fork? After the first session, Sammy will know that all he has to do is scream to get out of what they are trying to make him do. This is just fact. It is the way he is. If you dont make him do it he wont. He will try and find any way he can to stop you from doing the task at hand. I have watched him do it for 2 years. Luckily, his ABA therapist doesnt fall for it.
    We are working on finding the right team of people to work with Sammy. We are not saying forget this or that. We are looking for people who will be able to handle the tantrums while trying to teach him the things he needs to know. Finding the right place for help is a very challanging and costly task. We cant afford to keep testing him here and there. Our inusrance doesnt cover any bit of it. We pay in full for every therapy and dr and test that we do. In 3 years we have paid almost 50 thousand dollars for all that we have done. At this point we have to look at all angles and see who we can afford and who will work best with Sammy.