language or speech advice needed

Discussion in 'General Parenting' started by Dara, Jun 14, 2008.

  1. Dara

    Dara New Member

    Hi all. I have a question for all of you. We dont really know who to call or where to go for this one. Sammy has speech. It has improved greatly his comprehension has improved a lot as well. It is still lacking the clarity and fluidity that it should have. That I know we need a speech pathologist. What we dont know is what to do about the randomness of words. WHat I mean is he will just randomly start saying a word is totally out of context. He will tell a story that has no meaning. They are just words together they dont actually mean anything together if that makes any sense. He has no problem screaming nonsense but some of the time definitely not all of the time, he speaks so quietly that unless you have supersonic hearing, you have no idea what he is saying. Where does one go to get help with that? Is that also a speech pathologist or is that someone else?
  2. smallworld

    smallworld Moderator

    Dara, my guess is that a well-trained speech/language pathologist can help you with any speech issues you're having with Sammy. Have your docs made specific recommendations about which SLPs should work with Sammy? Have you contacted thos professionals to explain the extent of the issues and see if they can help? That would be my recommendation for the next step to take.
  3. SRL

    SRL Active Member

    Yes, at his age a speech/language pathologist would deal with those issues. They work on a wide variety of communication issues: enunciation, volume, combining words properly, social speech, eye contact, and difficult child's even worked on telephone skills with him when he got to the point of wanting to talk on the phone with friends.
  4. Marguerite

    Marguerite Active Member

    Yes, this is definitely a speech pathologist's job. I've got to know a lot more since becoming good friends with maybe the best speech pathologist I've ever known.

    Speech pathologists deal with a lot more than speech. They also can help with people who have trouble swallowing (such as after a stroke or other brain injury, for example).

    Dara, what you describe is a LANGUAGE issue, rather than speech. We had the same sort of thing with difficult child 3 - he could read aloud (accurately) but not have any understanding of what he was reading. However, when he was learning to read we found that once he could read a word we had a chance at teaching him what it meant and having this stick.

    difficult child 3 also would sing along to the radio; he could sing an entire song and get all the words right. But he also would vocalise the more obvious sound effects/backing music AS IF IT HAD EQUAL IMPORTANCE to the words.

    The reason for this - for difficult child 3, he had no concept of meaning. WHat he was reproducing was, to him, simply a random series of sounds. The fact that he was capable of remembering such a complex sequence but with no understanding of any meaning to help him remember was simply remarkable.

    An interesting effect we noticed when difficult child 3 was reproducing lyrics or movie text like this - when he didn't understand it, the words had a 'blurred' sound. Have you ever heard a visiting children's choir singing in English when it's not their native language? You can get the same effect in how they 'mangle' the English text in the song. It's less obvious in singing (because accents often disappear in singing, it's the artificial way certain phonemes get lengthened).

    All this was happening with difficult child 3 when he was about Sammy's age.

    You need to distinguish between what you mean when you talk about "speech" and "language". Speech is when you vocalise. It doesn't have to mean anything, but we usually do speak with some degree of meaning. Language is not necessarily vocalised but is more complex in that it requires the brain to connect the sound (where it's vocalised) to the meaning. There needs to be some sort of abstract connection - the sound becomes a symbol.

    A baby babbles. There is not necessarily any meaning to it. Even when a baby first begins to say, "ma, ma, ma" they're not saying "mother", they're simply making sounds. WE are the ones who put the connection there, to meaning. It doesn't take much longer, as a rule, for a baby to learn that "mama" means "mother".

    But with difficult child 3, that connection didn't happen when it does with other babies.

    Also, think how soon babies learn to respond to their own names. Think how quickly A DOG can recognise its own name. Well, difficult child 3 didn't. It was as if he had no understanding that the sounds we made had any meaning at all. He could mimic our sounds, but had no understanding at all. I could be searching for him, calling him, frantically turning the house upside down and finally running up and down the street looking for him, calling him, asking the neighbours - only to find him happily sitting playing under the table hidden by the tablecloth. This happened a few times. When I found him he looked up and smiled - not in any "aha! You found me at last!" sort of way, more along the lines of, "here is a face I like." Absolutely no sense of knowingly having hidden. Despite the noise and the turmoil he just hadn't realised I was looking for him.

    Now, you know how well difficult child 3 is doing now. At the dinner husband & I went to last night, a man spoke to husband about difficult child 3. This man has been working a lot with difficult child 3, spends a lot of time with difficult child 3 filling buckets of coal and lugging them round the train track for the drivers. And he had only just been told that difficult child 3 is autistic. He simply hadn't realised. Yes, he noticed he was slightly odd in the way he interacted sometimes, but he's a good kid, willing to help and very clever.

    difficult child 3 is now doing really well. He is studying a mainstream curriculum and doing well (in most subjects). He has an amazing vocabulary, sounds like a walking thesaurus. When he looks a word up in the dictionary, he also looks up and studies the etymology - the origin of the word. So there is a lot of hope for Sammy.

    What is needed - a speech pathology assessment. This is needed NOW. Part of tis will be useful in determining a diagnosis. And a big part of it will be important in setting the benchmark against which you mark Sammy's progress.

    Next - speech pathology intervention and support. We actually didn't get much of this because what was available was limited, for us. But we found difficult child 3 had his own ways of learning, of finding ways to function.

    This may not work for you, but somewhere somehow, Sammy is already giving you clues of what he is interested in and what he is capable of. Use these as your key, like a key to get into a tin of sardines.

    For difficult child 3 - because he was highly interested in letters and numbers, we used this. We encouraged him, we showed him numbers and letters and used them to help him.

    1) I made him lots of little, disposable books. You fold a sheet of paper in half. Turn, fold in half again. Turn, fold in half again. This should give you a small book with 8 leaves in it - 16 pages. Staple down one side and put tape over the staples for safety. Now cut the folds open to make the pages. Get out your pencils and draw for him. I drew difficult child 3's face on the front and wrote his name underneath. Inside, I began with the words he most needed and also seemed most likely to use. Words like "stop", "go", "exit" (because there was an exit sign he always pointed to in the building where his babysitter lived). I also would draw a picture to match the word. For example, "stop" was a stop sign. I also had a standing stick figure under it. "Exit" was a stick figure disappearing round a door with an exit sign above it. "Car". "dog", "cat", "truck" are all fairly easy. As a book got chewed, or forgotten and put through the washing machine, I would make another. By then he might have new words to learn.

    2) I used photo albums. You can also use those plastic folders with clear sleeves for displaying a kid's school assignment. Write a story about Sammy. Put in photos of Sammy doing whatever the story says he is doing. For example, with difficult child 3 I wrote his story - "My name is.. I am a boy [because he had trouble understanding what is a boy, what is a girl]. I live at ... I like to climb trees." and so on. I had a photo of him up a tree, I put in a photo of him standing outside our house and so on. As the story progressed to outline his daily routine (which the book helped to nail in place) we would have photos of difficult child 3 cleaning his teeth, eating his meals, having his bath, getting dressed for school and so on. Also, any special days (such as our steam train trip on the Cockatoo Run) we took lots of photos and then wrote a special story for him to put in a folder. We would then read the story with him, sticking to the same words, and showing him the words as we read. Because it had happened to him and he remembered, it made it easier for him to memorise the sequence but to also understand the connection between what we read, and what he remembered of the experience. This also helped put language in place (ie understanding) as distinct from just speech.

    3) We let him watch DVDs with subtitles on. He would watch them over and over, often zipping it back to re-watch a scene. difficult child 3's best friend's father commented on HIS son (also autistic), "He just watched them, over and over. There's nothing going on in his head, it's like he's just not there." I pointed out tat he definitely WAS there and working very hard to put it all together into one big bundle - the words, the meaning and the social context (gleaned from the action itself). Because they watch DVDs like this, they will often quote large slabs of text (often totally out of context). You should let them, because they seem to know instinctively what they need.

    4) He got involved with watching TV shows aimed at teaching adult migrants to speak English. This one worked especially well, because it fitted difficult child 3's love of reading (hyperlexia). It also didn't 'talk down' to him - difficult child 3 has always hated being patronised. The TV shows for adult migrants were wonderful - they were strictly to a formula, very predictable in what segment came next. First there was a short dramatisation - a serial telling the story of an Aussie family. In this dramatisation a certain phrase would get used by different characters which would be the lesson for the day. Next came the two presenters, each using the phrase and showing by their actions what it meant. For example, "Is he playing golf today? Yes, he is playing golf today. Is SHE playing gold today? Yes, she is playing golf today. Are THEY playing golf today?..." and so on. For "it" they had a dog. It was funny seeing the dog with golf clubs! Then they had "Professor Say-It" who would focus on pronounciation of a particularly difficult word (for some people). All of this was subtitled, of course. They would do a short quiz on the serial - "Did Andy play golf today?" and the whole thing went for about half an hour. Another really good one was for teaching English-speaking people to read. Now, these programs wouldn't be suitable for you unless you wanted him to speak with an Aussie accent! Besides, probably unavailable now. But this is what worked for difficult child 3. Unusual, but darned effective.

    We had to teach him the things most other kids learn by osmosis. And you need to keep remembering this - there is a tendency to think, especially with really bright kids, that "they're doing OK now, we can let him go on by himself from here," and this is a mistake. Even difficult child 1, now 24 and working full-time, needs my help in getting some vital paperwork completed and solving bureaucratic bungles. He's smart enough to know what to do (you would think) but couldn't organise his way out of a wet paper bag.

    Sammy is only 3. He should have some fairly obvious language skills by now but clearly does not. You can't let the grass grow under your feet with language issues. But while you should get a speech therapist involved, there are also things you can do. I can't tell you specifically what you should do, but if you stand back and watch him for a bit, see what he really plugs into, and then see what you can piggyback to that to link him in with some good language skills, then go for it. You will need to schedule regular time with him to sit and work with him (let him think it is play) and use every spare minute you have to help him link these connections in his brain.

    Compics are small cards with simple pictures on them, like stylised symbols. They represent different things. He needs to learn to use them to communicate with you instead of shouting random syllables. Once he gets the connection between a picture and its meaning, you can then teach him the word that connects in as well.

    For example - Sammy wants a drink. He might come and grab your hand to drag you to the fridge, so you stop. "Do you want a drink, Sammy?" You get the compics (usually kept threaded on a string, like keys). "Show me the picture for drink, Sammy. Show me drink."
    Sammy might be too impatient to do this, but the aim is to get him to use the card that shows a drink, to let you know he wants a drink. You reward him by giving him success - he shows you the right card, you immediately get him what he wants.
    Next step - keep telling him it means "drink". Let him use his compics, but if he is in a hurry and just asks by name, reward him with praise.

    If he is still struggling and you're fairly sure the methods I suggested won't work for Sammy (maybe he's not into reading at all) then a fairly high priority is to look for Compics. You should be able to find examples online that you can print out. A speech pathologist should give you some too, because although compics are a non-speech alternative, they ARE communication. Language. Grab some examples online, print them out on paper, and stick them to cardboard. Cut them out, put a hole in them with a hole punch and thread them onto string. Use them when you are trying to communicate with Sammy about something ("bathtime, Sammy" - show him the compic for "bath").

    It may seem slow and tedious, but the hardest step is the first - that first link between something and its symbol. Once a person grasps the idea that something can be represented symbolically, that's the big step done. The next is much easier.

    From there it begins to snowball.

    Some concepts may take longer. difficult child 3 started school (age 5) finally understanding the meaning of "who" and "where" but not comprehending "why" and "how".
    A few weeks ago he was discussing more complex words with his English teacher; words like "metaphorical".

    We are dealing with other problems connected to the language delay, but we are finding our own ways there too. Again, certain games can help a great deal.

    I hope this can help, Dara.

  5. Dara

    Dara New Member

    The thing is Sammy does have the ability to use complex sentences. For instance, he can say, "lets go to the woodlands and I go in the museum" His speech and language has improved greatly. A lot of it is part strong will and part lack of comprehension or not being able to say the words as fast as his brain is thinking a thought. Yesterday for instance he was telling us a story. It was just a collection of random words. There was no story or words that fit together. It was just random words. Other times, He does tell a story. Later he told us in house lives a little sammy a big sammy and a huge Sammy. He was making a silly story and we really went with it. The thing with Sammy is his behavior is always the thing that stops the progress. We also have all of the Pervasive Developmental Disorder (PDD) issues and typical behaviors. As his seizures have stopped these behaviors of become more noticable. He knows what he wants and has the ability to tell us! There are times he uses this voice and accent and we know as soon as we hear it, no intelligable words are going to come out. Nobody knows what this is or why he does it. I know it grates through us like a knife! We are doing the ABA at home but we need to find a good speech pathologist in our area. That is going to be the challenge. I allready asked the local Autism group and I will be asking the school on monday if they have any good people to use.
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    With a diagnosis. of Pervasive Developmental Disorder (PDD), he should be in early education. My son had many speech issues and started Early Education at age 3. It was AWESOME for him. He didn't just get speech (although he did get it daily) but had a long list of interventions. Can't tell you how much that helped him in the long run! I'd call your school district to set up an evaluation...and I'd push to get him in, if he isn't already.
  7. Dara

    Dara New Member

    We had an evaluation done in the school district. he went to a speech program this past year which was 2 hours 2 times week. Sammy got nothing out of it. This was the only program he qualifies for. Nothing else was "serious" enough for them to help with. He has continued with ABA therapy. From nov-june he went to the day treatment center there 3 days a week and did the speech class 2 days a week. Everyone agrees that he needs to be around normal kids. Sammy picks out the child with the most severe disabilities and copies them. We are hoping that by being around normal children he will copy that behavior instead. We are doing the ABA at home and are looking for a good Speech pathologist to help us along as well. The school district did extensive testing and offered nothing
  8. SRL

    SRL Active Member

    There's a lot of good Speech Language Pathologist (SLP)'s out there. I'd suggest contacting your local chapter of the Autism Society of America and inquiring who in the area parents were pleased with.

    Also, it's important to keep in mind that where it might have appeared that Sammy got nothing out of it, sometimes the progress isn't apparent. Often they're absorbing it without your recognizing it and progress comes later in leaps and bounds instead of slowly and gradually when you expect it.
  9. Dara

    Dara New Member

    The other parents in the class agreed. The program stunk. I think it was the teacher we had. The parents in the other class were pleased. Our teacher was always frazzled and there was always an excuse as to why this didnt happen or this didnt get done. She also was out a lot so class was cancelled all of the time. We are happy with the school he is in. It is a private school and it started out as a special needs school. They are very good at working with Sammy!
  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Ugh. Dara, we had the same experience when Lucas was five. They said he'd "outgrown" his difficulties and he tested "normal." He did go to regular classes, but he still got speech. In a few years, we forced the school to continue Occupational Therapist (OT), PT and social skills classes. It wasn't fun to get them to do it. Lucas had a run of wrong diagnosis., including bipolar. But we found he did best in a combo of Special Education and regular classes. Eventually he did so well that, now that he is entering high school, his classification is only Learning Disability (LD) and he will be mainstreamed without an aide for all his classes. He has really "normalized" for lack of a better word, yet he is still different enough that we'll have to watch him carefully to see what the future holds. At any rate, his teachers and classmates LOVE him. We are considering a two year tech school for him when he is eighteen. At one time it looked like no college at all and assisted living. He may still need assisted living, but probably just an apartment that is supervised (maybe a roommate). It started out seeming so much worse. Try to get as much help as YOU feel he needs. He doesn't have to be away from "typical" kids to get those services. Good luck :)
  11. Marguerite

    Marguerite Active Member

    Dara, take note of the sort of things he is fluent with, and the sort of things where you get the more random assortment of phonemes. I'm betting his is fluent with fairly standard sentences that can be used regularly (or modified slightly, like a template). For example, difficult child 3 learned fairly quickly, while still at a one word stage in so many areas, to say, "please may I have..." followed by whatever he wanted. Sometimes it came out oddly especially earlier, such as when we got "Please may I have go to the beach?" He did stop that fairly quickly once he learned the right way to do it. Again, reading the special stories I wrote for him (with pictures etc) helped him a lot because he used the same phrases and sentence structure as a template.

    Also take note of the sort of things he can talk about fluently, and the sort he has trouble with.

    I first realised difficult child 3 had problems when I compared him to a friend's child, the same age. This little girl told me one day, "I like watching 'Mr Bean' because he is so funny. I really liked the one where he had a party and his friends came, and they left early. Then next morning one friend reached in to get his hat just as the paint can exploded and it left a pattern on the wall. That was really funny, I liked that."
    Meanwhile difficult child 3 was still saying, "Please may I have go to shops?" and could not answer a question about how his day at pre-school was.
    Now he is 14, difficult child 3 can tell a story that he knows by relating a sequence of events. He can put a story in sequence (one of the tests in a psychometric assessment and also speech pathology assessment is to see how well they can sequence a series of images). He can also make up a story, utter fiction, and has done well in this area (much better than difficult child 1 could). Sometimes he uses a story line or character from something else, such as "One day Yoshi and Princess Daisy were walking in the park when they saw a big dog." and so on. easy child kids go through a phase of doing this, often using their friends' names in their story-writing. But difficult child 3 is now much more able to make things up - naming pets, for example. In the past he named his pets after favourite cartoon characters or game characters. However,our recent budgie is called "Lucky". I don't think that's a character in anything.

    We did have early intervention for difficult child 3 but only one morning a week which was woefully inadequate. I think it was more disruptive for him than anything else. Other than that, difficult child 3 attended a mainstream pre-school and mainstream school with normal program. He had an aide for about half the time. We used a communication book between home and school which helped a great deal. And again - we used the computer a lot to teach him. He had big learning gaps at school which we didn't realise were as bad as they were, until he began to spend a lot of time home due to being sick so much (due to anxiety).

    Basically, we found what worked for him and used it as much as we could. Games, lessons, tutoring - mostly games, though. Museums, galleries, DVDs, educational TV shows. I remember reading years ago that Downs Syndrome kids do better in a stimulating environment. We surrounded difficult child 3 with the sort of stimulation he seemed to be seeking, and then linked it back to what he needed to learn, as much as we could. We ignored age-appropriate. For example, difficult child 3 was having trouble conversing at an age-appropriate level but there was no point pushing harder when his brain just wasn't ready. Meanwhile he WAS learning algebra, so we let him. Currently he's (of his own volition) studying senior high school poetry, organic chemistry and inorganic chemistry, all at senior level. Sometimes it's beyond him but he chooses to do it. When the TV lessons come round again, he picks up a bit more each time.

    We were told to not let difficult child 3 study another language until he had mastered English. We finally let him learn German two years ago. He isn't studying it this year but is still sometimes practising it in his own time. I speak a little German and a little French, so I can talk with him when he wants to.

    It's all part of keeping that massive intellect stimulated and constantly improving. It sounds like Sammy does have a lot in common here. We also must remember - when these kids do well, it is often very much due to their own impressive abilities and their intense desire to be as normal as possible. Sammy's story-telling (with random words) sounds to me like a desperate attempt to do what others are doing. I remember as avery small child, making up my own songs and singing them. I was putting random notes and random words together to make a sound that I liked. I was very unselfconscious about it but when people began to notice and make comment, I got shy about it and soon forgot how I had done it. I began to use music in "more appropriate" ways, but they were less creative, to my very young mind and I regretted what I had lost. It was before I ever went to school so I had to be under 4 years old at the time.

    When he tells you 'a story' listen to him and thank him for such an entertaining story. This is encouraging fluency, even if it's random. It's also boosting his confidence to try even more and hopefully soon he will string known words together for a longer fiction.

    Also ask him to tell you a procedure that you know he knows. For example - what is the procedure for starting the computer? I could ask difficult child 3 - what is the procedure for making noodles? Or ask him to tell you about a happy adventure you shared, perhaps a holiday or trip to the shops. It is interesting to hear what they consider of value.
    difficult child 3 wrote (for school) the story of his trip to "The Summit", a highly regarded Sydney restaurant - it's revolving, it overlooks Sydney Harbour and we went there for difficult child 1's 21st birthday. It was a very important day and we all had a really great time. In difficult child 3's story, he emphasised that the restaurant was on the 47th floor. The trip in the elevator was of paramount enjoyment for him because he could watch the numbers changing really fast on the indicator board. The impressive views as the restaurant rotates once every 90 minutes - not important to difficult child 3. He would go stand by the elevator to watch as people came and went. He got at least as much fun out of that as other people were getting out of the view, so we didn't feel the trip was wasted on him.

    Give Sammy what he wants intellectually, encourage him, stimulate him and help him learn as much as you can. Love him and help him learn what love is. Talk to him, listen to him. Involve him. And watch him - what he chooses will be signposts to where to go with him next.

  12. busywend

    busywend Well-Known Member Staff Member

    Dara, what else does on while he is speaking jumbled and softly? Could he be having a seizure?
  13. Dara

    Dara New Member

    No he is not having a seizure at that point. He is literally speaking very quietly to tell you something and then you tell him say it louder I cant hear you, he gets frustrated. It doesnt happen all of the time. For instance, the other day we were in the mall and he was practically whispering that he wants a grilled cheese sandwhich. It took about 10 minutes to figure out what he was saying. Other times he says it loud and clear. I always find he does it in places that it is hardest for us to hear him. Always in the car. Again, if he is speaking in nonsense words or just being silly, he says it loud and clear. It is not all of the time that he whispers everything just sometimes,