School District Evaluation

Discussion in 'General Parenting' started by Dara, Aug 8, 2007.

  1. Dara

    Dara New Member

    Sammy finally finished all of the testing at the school district. He had the speech evaluation on the 30th and thankfully he qualifies for speech. If he didnt, I dont know who qualifies! For that one they said he has a hard time putting together language. She said after 2 words his language was unintelligible which we already knew! Today, he had cognitive testing. They havent scored it yet but basically he is behind in comprehension and his behavior issues and inability to accept help and direction stop him from progressing. For instance: Sammy can do the pincer grasp well. Yet, he holds a pencil, pen marker crayon, whatever from the top so he has little control of it. He goes bonkers if you try to show him the correct way so, he stays stagnate in the inability to write or draw with control. Same thing with the spoon. We have been trying to correct this one for a year and still it wont change because Sammy wont allow it to. Same goes for his language. He will stand and grunt instead of using his words and when he doesnt get any response for grunting he throws a massive tantrum, so his language isnt progressing either. They also told us that he is unlike any child they have seen either. So far that is everyone we have brought Sammy to see! Noone has ever seen anyone like him. There has to be another Sammy out there somewhere!
  2. Marguerite

    Marguerite Active Member

    Oh yes, there are other Sammys. difficult child 3 was a Sammy. We were lucky, the 'door' was open a crack because difficult child 3 was obsessed with numbers and letters, plus he could use a computer to play some simple games. We showed him how letters make words and would write down the words he needed - one word to a page, with a drawing of the object as well. We labelled everything round the house and would stop and read them to him, pointing to the word and patting the object.

    Compics are definitely worth trying - the most important thing right now is to get him to communicate. If he has to use sign language, or point to a flash card on a key ring to do this, at least it is communication. It is a start.

    This is massively frustrating for them at this age and that is why they throw tantrums. They want it NOW and WHY can't we read their minds?

    Hang in there. You're getting answers.

  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Well, Lucas was a Sammy. He's on the high functioning autism spectrum and the schools never came close to catching it. They did give him speech, Occupational Therapist (OT), PT, but didn't know why he needed it. Lucas also could not hold a pencil right. In spite of years of Occupational Therapist (OT), he still can't write (his printing is finally legible). I urge you to take him to a private neuropsychologist. He'll get more services once he gets a more intensive, non-biased evaluation. Good luck.
    To Meg: What is it about letters and numbers with these kids? LOL. My son would stop raging if I starting reciting the alphabet! He knew all the letters and numbers by age two, yet he couldn't These kids are sooooooooooo different :wink:
  4. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    "They also told us that he is unlike any child they have seen" - isn't that what every parent of a difficult child wants to hear :nonono:

    Marg and MWM have assured you that isn't true! Hope the results of this testing prove helpful to Sammy and the family.

  5. Marguerite

    Marguerite Active Member

    MWM, the letters and numbers thing - being obsessed with letters and numbers but without the level of understanding that should go with it at least partly - that is hyperlexia, especially when there are autism-like symptoms present as well. My view is that hyperlexia is a subset of high-functioning autism/Asperger's. There is probably an overlap into normality, just as these conditions can overlap in other areas. But hyperlexia can be a gift, in my opinion, because it can open doors to communication early enough to be able to give the child more help than they might get otherwise.

    Maturity is much slower, but they do eventually get there, or close to it.

    difficult child 3 also has always had an immature grip - still does, but less so. His handwriting is messy, using utensils causes pain. When you watch him hold a pencil, a fork or anything similar, you can see the tips of his fingers bending backwards at almost 90 degrees - he has hypermobile joints. Interestingly, so does every other Pervasive Developmental Disorder (PDD) member of the family from husband down. I do wonder if there is a link. I have also heard of this in other kids - other Sammys - so I do wonder if we could get our heads together and maybe define a new condition, "Sammy Syndrome", which includes autism-like symptoms coupled with hypermobile joints, fine motor dysfunction to a varying degree, hyperlexia and so on.

    What can really confuse schools etc is that these kids seem very different - they may make much better eye contact, they may be more gregarious, when they do start talking they won't shut up and have an amazing ability to argue that black is white, they have amazing abilities in a number of areas, but then you realise - somewhere in their heads, they're still very immature, even if they CAN discuss quantum physics with you. Today difficult child 3 & I were watching a schools TV show on electric current; difficult child 3 was telling me how effective (or otherwise) he felt the model they were using was truly representative of the phenomenon of electric circuit theory. Back when he was 3 - he could say, "bird", "car", "stop", "shop" (because it looked like "stop" and he wanted to know the difference) but couldn't even answer a simply question. He had only just learned that he had a name, and what it was. Oh yes, and he could say, "Computer", "exit" and "quit". "Shut down" was in there as well. And he could read and count to three digit numbers.

    This world needs more Sammys - they are the Bill Gates' and the Stephen Hawkings' of the next generation.

  6. KateM

    KateM Member

    Oh, I can relate to this! When difficult child was Sammy's age, we were told he was a "puzzle" by several professionals along the way (teachers, therapists, psychologists)It really weighed heavily on me to hear that a child psychologist would be baffled by my child!

    It really helped to have an Occupational Therapist (OT) work with my son when he was little. The Occupational Therapist (OT) was able to help with fine motor skills, such as writing, that we as parents hadn't been able to.
  7. Sheila

    Sheila Moderator

    I'm glad they are seeing some of his problems.

    School district's are required by law to evaluate to see if a child meets eligiblility for services prior to any services being provided. In theory, the evaluation is a multidisciplinary evaluation that should be so thorough as to identify all problems. In actuality, this rarely happens.

    Additionally, it happens that when problems are identified only a portion are treated. Example: Your child has motor skill problems and the Occupational Therapist (OT) is limited to fine motor skills. Because overall motor skills are so important to learning now and in the future, limited Occupational Therapist (OT) is not the solution.

    Another example would be Speech-Language Therapy. Speech therapy is given, but the child needs language therapy also because of an auditory processing problem, or maybe a receptive language problem, or maybe a etc., etc., but doesn't get the language therapy.

    This is the long way of saying that school district evaluations are necessary, but I'd also want private evaluations.

    by the way, there are several theads in the Sp Ed Archives you may want to read.
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Megs, you certainly "get" these kids! Unfortunately, Lucas is not Aspergers. As he hits his 14th year, I can see that his life is a lot different than any typical teen. His reading level skills, once advanced, are now a little below average and, partly due to how hard it is for him to write and spell, he doesn't communicate well in writing either. He CAN communicate better than when he was younger, and certainly has an excellent vocabulary. Lots of what he says are repeats from television or of what others have said to Lucas is still "quirky." We were also told "I've never seen a child like him..." Bah! You're right. These autistic-like symptom kids are on the Spectrum and need THAT kind of help, not just treatment of the symptoms--like speech. They need to learn how to socialize with that speech and alternative ways to communicate if they cant. Lucas was being taught sign language before he broke into speech. But you know all that. It's very hard to get a Pervasive Developmental Disorder (PDD)-not otherwise specified or Aspergers diagnosis. here--and, once you get it, many school professionals know nothing about how to teach these kids or WHAT to teach them, so, yeah, they get frustrated and act out (not to mention that they insist that things be done in a certain way or they seem to freak). Lucas is more flexible about changes than some Spectrum kids.
    I don't know the answer. So many of these "quirky" kids are overlooked. And even with all of Lucas's interventions, he is too different to live alone as an adult unless there is a rapid change. As of now, without forcible prompting, he still won't shower or change his smelly clothes or do anything other than play videogames or watch television. THIS trait has gotten worse as he's gotten older, even though we've had him in activities all of his life. He focuses on just a few obsessive interests. I see my eleven year old daughter always with friends, always wanting to do stuff and then there's Lucas who doesn't want anything to do with his peers once he's home from school. He is not really all that interested in interacting with kids his age. If I didn't force the issue, he'd stay home 24/7. If he lived alone as an adult, I'm afraid he'd become a hermit who never dressesd or remembered to pay the I worry about him, yet he seems perfectly happy the way he is. Ugh. Anyways, vent over.
  9. Dara

    Dara New Member

    The problem is, Sammy is his own worst enemy. It is not that he cannot hold a spoon or pencil the right way, it is he will not accept direction or help to do it the correct way. Sammy does not accept directions or instructions at all. He has a hard time accepting from others but especially not from husband and myself. For a long time the therapists wanted us to do the tasks at home and thought we just werent doing it. We video taped it on several occasions and they saw that we cannot do these things with him. Sammy does not generalize. If you are the one to teach him something than you are the only one who can do that task with him. For instance, at school, at the beginning of last year, one teacher helped Sammy with his yogurt. She was the only teacher who was "allowed" to do it. I am the only one who can give Sammy a bath. husband is the only one who can give Sammy a shower. IT CANNOT CHANGE! Examples for Directions: When we were first showing Sammy how to use a fork he would not hold the bowl with his other hand. All you had to do was say "Hold the bowl" and it was over. He wouldnt eat with a fork. Language: This morning Sammy wanted the "clock light" that is what he calls this clock. He sat and pointed and said "UH" I know he knows the word. I said Use your words to tell me and he wouldnt so he didnt get the clock...Not to mention he could stand up and get it himself but that is something completly different. He is holding himself back and nobody is going to be able to help him if he doesnt accept the help. He has quite a vocabulary of words. He has the ability to say what he wants. We have never not known what he wants. His speech troubles lie in trying to put 3 or more words together. His frustrations do not come from lack of peoples understanding. He is literally trying to pick a fight. Knowing that he needs to say what he wants he is choosing not to. When he REALLY wants something he tells you and sometimes it is in a phrase not just one word. It is so frustrating because he has the ability to do so much but his behavior and need to be in control at all times is the main thing that is stopping his progression!
  10. Dara

    Dara New Member

    Sheila, I meant to tell you it is funny you mentioned the language receptive disorder and auditory processing problems because I have both and have wondered that about Sammy but I know he is probably to young. I also know that his diagnosis will change a million times between now and tomorrow!
  11. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Dara, his rigidity is also an autistic trait. It may not be that he is his own worst enemy--it may just be the way he knows how to be. I'd seriously have a child with these symptoms evaluated by a neuropsychologist. A laundry list of symptoms similar to Sammy's often means the real problem is Autism Spectrum Disorders (ASD). UPDATE: I see he HAS a Pervasive Developmental Disorder (PDD) diagnosis. That is Autism Spectrum Disorders (ASD)! You know this, don't you?
  12. SRL

    SRL Active Member

    Have you looked into using sign language? Sometimes when children seem highly resistant to putting bits of verbal language together there are reasons that we as parents and the professionals in their world simply have not yet understood. Sometimes providing alternatives such as sign language, picture systems and keyboards can open up doors of communication for them.

    I was also told that the district hadn't seen any child like mine before but it turned out that once the staff started working with him, they had indeed seen kids like him, only they didn't have formal diagnosis's or else not full diagnosis's on them at the time. They also had worked with kids who had some of the same traits and were able to do a good job despite encountering a child that was new to them.
  13. Dara

    Dara New Member

    I think I am having a hard time typing this so people understand what I am saying. SAMMY IS NOT AUTISTIC! It has been decided for the time being by 4 different doctors that while Sammy does possess certain tendencies, he does not fit under the spectrum at this time. I know that can change at any point in time. The problem we face is mostly behavioral. He has the ability to do so much. H can speak. He has thousands of words. He can hold a spoon and a fork and a pencil. He chooses not to use his words. Instead of saying "juice" which he is more than capable of saying, he will point and grunt. Not to mention the fact that he can stand up and get it himself! If it is something that he is desperate to have he WILL use his words and tell you. His main form of communication these days is screaming and grunting. Again, if the mood strikes, he WILL use his words to tell you what he wants. Sammy's pincer grasp is perfect. We have tried over and over again to show him the correct way to use a spoon. He WONT do it. He can use a spoon or shovel correctly to scoop sand or water, he just wont use one the right way to eat because it wasnt his idea. What you have to understand is the second that you suggest anything to Sammy is the second that whatever it is, is over. He is one of those kids that you can say to him DOnt touch the stove it is hot. And he will touch the stove because 1) you told him not to and 2) he doesnt believe you, he has to find out for himself. Basically what I am trying to explain to you is, that all 5 doctors that we see are in agreement that Sammys biggest problem is his behavior, Defiance and inability to accept direction. That is what is holding him back the most not his inability to do the tasks at hand.
  14. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Lucas wasn't diagnosed until he was 11. More than four professionals told us he's not autistic, rather autistic-like (now I wonder what the difference is). We saw psychiatrists, his pediatrician and psycologists. They all missed it because he is high functioning. The older he got, the more obvious it became, but we still couldn't get the diagnosis. I do think you will eventually visit the diagnosis. The main thing though is to address the interventions. Lucas had behavioral difficulties too at one time. Most Autism Spectrum Disorders (ASD) kids do. However, there is no real reason why a child would point and grunt rather than speak unless it is an effort--unless you are believing that he is just doing it to drive you nuts. Lucas is very bright too! He could read at two years old. As time went on, we found out he didn't understand as much as he could read, although he had GREAT expression. I guess it's a waiting game, but I'd be prepared. On the hot stove, I have to laugh. Lucas used to touch hot stoves, even after burning himself. It is more sensory than anything with Lucas. He used to be unable to resist touching stuff that interested or intrigued him even if it hurt him. His interventions have really helped. Take care and good luck!
  15. SRL

    SRL Active Member

    There are children of different diagnosis's with many overlapping symptoms represented here on our forum, Dara, and it's natural for parents who recognize similar symptoms to offer advice based on their experiences. It is natural for parents of children on the Autistic Spectrum to go there when Pervasive Developmental Disorder (PDD)-not otherwise specified is currently listed in your signature and Pervasive Developmental Disorder (PDD)-not otherwise specified is generally grouped with the Autistic spectrum. If 4 different doctors have agreed that Sammy's not on the spectrum then you might want to clarify in your signature Pervasive Developmental Disorder-not otherwise specified/Autism ruled out. If those doctors believe his primary problem are behavioral in the form of defiance, stubborness (or whatever) then perhaps it would be prudent to add that into your signature as well since it's rare that we see that as the primary underlying issue in a child as young as yours. Otherwise posters here will likely continue to interpret it as Autistic Spectrum.

    As always, take from the the replies what is helpful and disregard the rest. If you've covered your bases assessment wise, then diagnosis is probably not as important as interventions at this point anyway.
  16. Dara

    Dara New Member

    Sammy does have Obsessive Compulsive Disorder (OCD) which does have a lot of behavioral issues that come with that diagnosis as well as anxiety. Like I have said before that I know that the diagnosis can change with time. All I am saying that there are a million disorders out there. A lot of them share similar symptoms or traits. I am not in denial about Autism. We have visited and revisited that posibility many a time. It is just seems that when I am posting here instead of actually reading what I am saying, you are more focused on trying to tell me it is Autism. I have worked with many young children and have seen autism on many different levels. I have also seen and worked with many children who have similar traits to autism bud dont have autism or are not under the spectrum. I have been feeling lately when I have been trying to vent or explain something, I am being told that it is not possible for my child to be doing what I know and other profesionals know that he is in fact doing. Sammy is quite difficult in the fact that he is flat out defiant. He does in fact choose not to use words when five minutes before he asked for the same thing he is refusing to say right now. There is no question with any of the Doctors, therapists, and teachers that Sammy is defiant and that defiance gets in the way of his progress. There is no debate about that. The question is what do we do about it. That seems to be a mystery to many.
  17. SRL

    SRL Active Member

    There are scores of parents coming through here and especially on the General board where many people post it's hard for those who reply to remember specific details about a child and their diagnosis. Omitting Pervasive Developmental Disorder (PDD)-not otherwise specified from your profile may help because most people here (and I suspect elsewhere) do typcially equate that with Autism. The more different your child is from those more typically represented here, the more important it is to represent that clearly in the profile.

    Very occasionally we do have kids come through here that are different enough that few of us can relate to but that is rare (and often there is something neurologically unusual going on in those cases). It's often hard for us to help parents in those circumstances except by being a listening ear. If that's your situation and you aren't finding the advice here helpful but you need to vent, it would be good to just state in your post you are venting and aren't really looking for advice right now.

    As always, take what is helpful to you and ignore the rest. You're the parent and know your child best.
  18. Dara

    Dara New Member

    It is hard to keep up with the signature because the diagnosis keep changing. So far I have kept on there what we know for right now but that can change tomorrow! It is more pent up frustration than anything. I dont have any support system here. It is hard to describe Sammy as I am sure it is hard to describe most of our difficult children. They all hold certain quirky characteristics that are difficult to explain. When you see Sammy in action it is easy to see what we are saying but conveying that in writing is quite difficult. I think we have reached the end of our ropes with feeling any confidence of what to do now. I feel like we are fighting an uphill battle and unless Sammy decides to accept help or i dont even know the word I am looking for, there will be little progress. I am frustrated first of all because we are doing everything that we can possibly do and utilizing every service we can think to use and even with all of this, it seems like there is no progress. Sammy still doesnt walk in public, he is still throwing tantrums and physically violent towards himself and me. He always has new words. Everyday there are new words he just refuses to use them most of the time or he will whisper so you cant hear him. Secondly I am frustrated because we have no support. My in laws do nothing with Sammy. They tell us everyday how this is our fault and what we are doing to cause it. It just gets old. Something has to give before you completly lose your mind! We literally have spent the entire summer testing and going to doctors. To top it all off I have injured myself! I have a sprained ankle and it hurts and is annoying so I am extra irritable. Needless to say I am just frustrated with everything for now. I want answers and there arent any and there might never be any.
  19. Fran

    Fran Former desparate mom

    Hi Dara, I don't think I have met you. I have been scarce the last month. Sorry.
    When you mentioned that difficult child is his worst enemy because he will not do it the way it is taught, a bell went off. I think my son is his worst enemy. He could have mastered many of the skills that were horrid obstacles for him. Part of his personality is anxious to do it wrong, part is he is intelligent and tends to think he knows more than anyone else and part of it is the defiance that is a survival instinct.

    I wish I could give you some direction and paint a picture of where this will go in the years ahead but so many of our difficult child's do not fit in little categories.
    My son isn't bipolar and problably not horribly symptomatic of Asperger's but it's as close as they could come with the knowledge that is available. If it allowed my son to get treatment, then I didn't care what they called it.
    My son didn't tie his shoe until he was 13.
    He still struggles with making change. He can barely hold hold a job but he can drive and he reads voraciously and he can barely write or spell. He has high average intelligence.

    I'm sharing this with you because I understand the frustration of no one seeing the big picture of your son. The frustration of not having a set treatment plan. The frustration of being able to project forward in the life of a 3yr old.

    Your son is different. I think the term that was used when describing test results of my son at 7yrs old was "eccentric".

    My son learns different, has a different spin on what is important and how to do it. It's definitely not mine. It doesn't make him unintelligent but it does pose a lot of problems with function. The frustration for your son feels is equivalent to the frustration you feel. He can't articulate or release that frustration. He does what he thinks is right only to be shown and told over and over that this isn't the right way. Believe me when I say I'm not criticizing you. I tried over and over because I feared for his ability to continue in school. Funny thing is when I stopped blaming him for his learning disabilities (but held him responsible for things he chose) I learned what to go "to the mat" for and what to not give difficult child grief.

    I honestly say that my son brought me to my knees because there wasn't a therapy, a medication, a specialist or a test that I didn't seek out and try over the course of 20yrs. I felt I had failed him. I suffered for difficult child's emotional well being, his sanity and my failure to do what everyone else seemed to do without anywhere near the effort. I remember thinking how much easier his life would have been if he had accepted help and modeled his behavior after others. I know it's defiance but I'm pretty sure my difficult child couldn't change it anymore than a leopard could change it's spots.
    I wish I could tell you things to make this path easy but I can't. You have to keep mothering him. The teaching will come but the mothering has to be the priority. Look at his little face and ask yourself what does he need to help him master what he can master and hopefully you can work on him gradually mastering the other things. You may not see progress and then be surprised with his own development.

    A child who is a struggling student can be dealt with but a child who is struggling emotionally and socially leaves much bigger scars and is much more difficult to live with as a child and as an adult.

    I hope the suggestions that are being offered help you try something you haven't or to look at the child with a different set of eyes. It's all we can offer. None of us have a magic cure for a willful, defiant child. None of our kids can tell us what would have made a difference.