Update and more questions..little long

Discussion in 'General Parenting' started by tjg4god, Jul 17, 2008.

  1. tjg4god

    tjg4god just me

    Ok- as some of you may remember I posted last week about my difficult child and him having another doctor appointment and speech therapy so I wanted to update and ask a few more questions. First we went to the therapy appointment. and I was really disappointed in the whole process. He cannot/would not cooperate with them. They wanted him to look at pictures and tell them what is was etc. all the while they are blowing bubbles at him and had a TON of toys in there too. He cannot concentrate on what they want him to do with all that going on, so he got upset and had a meltdown. The therapist did not even tell me what she thought about his speech, they were supposed to address his feeding trouble(sensory etc.) and it was never even mentioned. And she told him that next time they would play the whole time. Why would I drive 45 minutes and waste gas and insurance for him to go play?? So how should I handle that? Then he had his psyc. appoinment with the doctor that handles his medications and diagnosis. I told her about his symptoms getting worse and medication not working etc. She said she could not do anything until he was 4. He is only 3 weeks from being 4. Will 3 weeks really make a difference? She added a morning dose of Clonidine which I thought to be kinda stupid because the evening dose has NO effect either. She stepped out for a minute and I looked at her notes.(maybe should not have) She put on them rule out Apergers/Pervasive Developmental Disorder (PDD). She NEVER mentioned this to me. Why?? He starts pre-k next month and I am so afraid he won't be able to function but docs say he really needs to go. Should I tell the school that he has these problems? I am afraid that if I do they won't take him? Has anyone has this happen? How do I handle it? further more I feel like I am losing my mind. husband and I are at odds over all this because he thinks difficult child is too spoiled but I don't. Granted, we have tried all the time outs, spanking, taking toys away etc. and it has not worked and now seeing her notes I feel bad for punishing him if he cannot help his behavior. Plus financial issues add to the stress and I feel like throwing my hands up and walking out. I fhe thinks he can do so much better then he can have them and see how it is. He says difficult child minds him better which is not really true. I just feel like crying and asking God why??? Sorry this has been so long and drawn out but this is the only place I have to talk with people who understand. Any feedback would be MUCH appreciated. I am SO grateful to all of you who post reply's. Oh, one more thing, someone posted and link for a Pervasive Developmental Disorder (PDD) screening tool and based on it he has moderate Pervasive Developmental Disorder (PDD).
  2. Marguerite

    Marguerite Active Member

    If you can, get husband to do the Pervasive Developmental Disorder (PDD) questionnaire too. And remember, if he's unsure of exactly how to answer he can go to the link for each question and make sure he's not being too harsh or too lenient. It could be the best way to convince him - by having him convince himself. Also, I get my husband to read my posts here and he finally joined in his own right. It has really helped us both be on the same page.

    About the Speech Pathologist - it sounds exactly right. I know it seems like all they're doing is backing off and twiddling their thumbs but if your child had a meltdown in the room today, you can bet they took notes and have details on what happened, what possibly triggered it and how he is responding (or not responding).

    Think about how the average child would be, in a room full of toys with a friendly person wanting to talk to them and play with them - I bet your son did not react anything like that. And the difference - the Speech Path will have made a lot of notes.

    No, that went very well indeed.

    And if they want to play next time - again, that is really good. Because all the child has to do, is play, in the same way he normally plays. And it will tell the therapist a vast amount.

    With difficult child 3, his Speech Pathologists (in the beginning) used play, a lot, in order to study him and determine where he was different. Part of the play was talking to him and getting him to talk in response. They wanted me to talk to him about what we were doing. difficult child 3 & I were playing with a farm set, and they gave me instructions on exactly how to talk to him and how to phrase things very simply (he was 2 and a half at the time). difficult child 3's reactions very quickly showed that he was not normal. He didn't rage, but if I talked in the short, simple sentences they wanted, difficult child 3 ignored me.
    Later on they let me do it my way and again watched to see how we interacted and how difficult child 3 played and communicated.
    The way a normal child would play - even at 2 and a half, the average kid would role-play with a farm set. They might walk the cow into the barn, gallop a horse around the paddock, maybe even have a cow head-butting another animal. But difficult child 3 - he picked up the animals one at a time and dropped them through the roof to make them fall. He then got a small ball and dropped that. He turned the barn upside down and tried to balance it. Then he found a sliding hatch and slid it back and forth, back and forth, over and over and over and...

    Speech therapists do more than just deal with the way someone pronounces their words. they deal with the development of LANGUAGE (which is not the same as SPEECH). Language is very complex - it's not just sounds but it's body language too, its the way we learn to communicate with another individual. A deaf person who signs must have language in order to do so. difficult child 3's language delay - he had perfect hearing, but he didn't recognise his own name. He didn't even seem to understand the significance of names. To begin with, he didn't even understand when we spoke to him. "Would you like a drink?" was simply a series of meaningless sounds to him. And yet he could sing entire songs from the radio, words and all. The words sounded "blurred" though. He hadn't memorised words, he had memorised sounds.
    By the time of difficult child 3's Speech Pathology assessment, he had some language. In play I could say to him, "get the cow," and he would reach over and pick it up (most of the time). But anything more complex such as "put the cow on the roof" involved two ideas at once and he couldn't do it.

    The Speech Therapist would have taken a lot of notes, but would need to go home and work through them all, with her textbooks open. I remember being frustrated like you with how long the process seemed to be taking, with so much apparent time-wasting. But this is a necessary step and frankly, the longer they take (within reason) the more sure you can be that they're being thorough.

    With difficult child 3, it took a number of appointments, each one an hour long, with us seeming to play most of the time (and towards the end of it, me and the therapist talking as well) before we began to get some answers. The written reports took at least a week longer, in some cases a couple of months longer, to be given to us.

    The things you describe the Speech Pathologist doing - asking him to talk about what was in the pictures, sounds like one of the formal tests that they do. The blowing bubbles etc also sounds like a combination of the tests plus their attempt to keep him happy and calm. His inability to do this also forms part of their assessment of his response. It is ALL relevant.

    Until the testing is finished (and it can take multiple sessions) they really can't give you any answers. There are too many possibilities which at the beginning can look a lot alike, superficially. For example, you might have emotionally neglected your child and not played with him. That can show up as language delay and disruptive behaviour. Or he might have a hearing problem - it can look very similar. Or any one of a number of possible disorders. Until they know for sure, they can't jump ahead any faster. For example, the feeding problem - if all his problems are due to a brain injury problem (which can happen before birth, or for any one of a number of reasons) then his feeding problem could be due to a spasticity of the swallowing muscles in his mouth and throat. If instead of a brain injury problem, difficult child has sleep apnoea which is causing him to sleep badly with many breathing cessations through the night, this can cause disruptive behaviour in a very young child as well as possible swallowing problems due to enlarged or infected tonsils.
    And if the problem is Pervasive Developmental Disorder (PDD) with language delay you're likely to be looking at autism, and the feeding problem looks increasingly like sensory in origin.
    They all need different methods to deal with them. So it is important to test properly to find out exactly what is wrong so you can then go rapidly to deal with the problem itself.

    Did you ask the psychiatric doctor why you had to wait another three weeks for him to turn 4? I agree that does seem a bit hair-splitting. Especially with pre-K coming up and you needing something to tell them and show them. Unless the doctor is expecting the speech path report in three weeks (at the current rate) and with that report, should have some answers.

    The doctor's notes saying "rule out Asperger's/Pervasive Developmental Disorder (PDD)" - I'm not sure if that means "we need to check this out, our first line of enquiry is to assess for Pervasive Developmental Disorder (PDD) before we do anything else" or "I am sure I can rule out Pervasive Developmental Disorder (PDD)".

    A lot of doctors prefer to wait until they're fairly sure of things before telling you, in case they are wrong and panic you over nothing. For example, a lot of doctors will ask for further tests in hospital if they find a shadow on your lung in a chest X-ray, and will wait to tell you that it's lung cancer they're looking for in case it all turns out to be nothing to worry about at all.

    Part of the doctor finding out if this is Pervasive Developmental Disorder (PDD) and if so what sort, IS getting the Speech Pathology assessment done. They can't do that bit themselves and to diagnose Pervasive Developmental Disorder (PDD) you generally need a number of specialists each looking at their particular field and then one specialist combining all the reports.

    Can you talk to te pre-K people? Or are they all on a break?

    When you can, I would talk to them and let them know that he is being checked out for Pervasive Developmental Disorder (PDD) in some form, currently being tested by a speech pathologist. If they have advance warning they may be able to apply for some level of support funding.

    Back to your husband - it is possible that difficult child DOES pay more attention to him. That doesn't mean he's doing things right and you're doing them wrong. It just means that difficult child sees you more, you are more familiar, he feels more accustomed to you and safer with you, and "lets his hair down" with you. And tat is a good sign on a number of levels.

    First, it means he's more likely to try and hold things together at pre-K and then let it all out when he comes home. Not good for you, but very good for pre-K.

    Second, it means he is functioning more highly than perhaps you might think, if he can make a judgement call like that, even subconsciously, between you and husband. And THAT means he has potential, he should be able to improve with support and the right handling.

    You've discovered that the usual strict punishments don't work. In which case - don't try them. All they will do is make him worse. And as you said, if he cannot help his behaviour, punishing him for it is not only pointless, it is cruel. Up until now you have certainly not been spoiling him. But the funny thing is, the method from here is going to SEEM like spoiling, but it should work.

    What you need to do, behaviour-wise, while you're waiting for all the medical etc stuff to catch up, is try "The Explosive Child" methods on difficult child. The book really is brilliant, with the strategies and insight it offers into exactly how to help a kid like difficult child, and WHY they behave the way they do. You could go out and buy a copy of the book but as you said, money is tight. besides, if I instantly bought every book recommended to me, I'd be broke. So I always try to borrow a copy first. Also, on this site, people discuss this book all the time. There are websites with sample chapters. So much info out there that you can grab without spending a cent. Later on when you want to, buy a copy.
    Have a look at the top of the Early Childhood forum, there is some good discussion on how to adapt "Explosive Child" methods to very young children. I think you will find that very helpful. Also, look online and try to find the sample chapter - I think it's the first chapter.

    This is something YOU can do, NOW.

    So what to do:

    * read the posts on the book
    * go to the speech path appointments because I really do think she is doing exactly what needs to be done
    * ask the doctor outright if you can get something from her in writing, to give to the pre-K in order to get some urgent help
    * try to get husband to do the online Pervasive Developmental Disorder (PDD) test and see what score he gets for difficult child
    * tell husband about us, invite him to come and read, or even post if he wants to. We have blokes on this site as well as women. Parents come in BOTH genders!

    And don't worry about the long posts. I'm shocking at that, I have some long ones indeed! If you need a long post to tell us what you need to, ten it's not too long.

    Hang in there. A lot of us have been exactly where you are now. Those who haven't been there exactly have still had their own major panicking battles to fight for their kids.

    And if the PDDd label is too scary for you or husband to cope with, if you feel it's too depressing - take heart that I have a handful of them. My older son, the Aspie, is getting married in November to a lovely girl. And my younger son, fully autistic and who was non-verbal for a long time and even when he started mainstream school (well after pre-K) he still had obvious language problems, is now doing really well. Talks a lot, has an amazing vocabulary, falls into the superior range in a lot of language areas, has a very high IQ, is turning in some impressive work in HIGH SCHOOL where he is doing a mainstream program. Although he DOES study high school by correspondence, but it's the same correspondence school that also deals with elite athletes and kids who are actors.

    So it's not necessarily doom and gloom. There is hope. A lot of it. But you need to go through the current processes with the doctor and the speech path to get there, otherwise you'd be going back to start, like a snakes and ladders game where you just landed on the longest snake of all.

    Keep us posted on how you get on.

    Because I'm in Australia, I'm often posting when everyone in the northern hemisphere is sound asleep. So if you don't get a reply very quickly (especially if it's late, or a weekend) don't lose heart. Someone will be along.

  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    It's not a waste of time at all. His lack of response and way of playing Or not playing) and his reaction to this stranger is extremely diagnostically important, especially when he has some red flags for a Pervasive Developmental Disorder (PDD).

    My son would not answer simple questions when he was three. He had really tough times with "W" questions (who, what, where, why). If I said, "What's your name?" he would say "Name" echoing me rather than answering. Yet he KNEW his name. If I said, "Lucas!" he would look at me. He didn't understand how to answer the simple question, which is common for a child on the autism spectrum, even if that child is bright (and my son was and is bright).

    My son's speech therapy progressed from his echoing to short sentences. At four he burst into speech and hasn't shut up since, but he's still on the spectrum. But it's mild. It could have been worse.

    Also, my son also got confused with a lot of stimuli going on in the room. I'm sure all the commotion was a test to see if he is sensitive to stimulis. He also had food issues and still does. There are some textures he will not eat. He tends to eat the same things over and over again. This is one thing that has not improved with time! However, in almost every area, my son has gotten better with age and with lots of supports and understanding both at school and home.
    in my opinion you must see this process through, even with hub in denial. Your son's future prognosis depends on his getting help ASAP. My son was in interventions before two years old.

    What kind of evaluation is your son receiving? Is it headed by a neuropsychologist? I wouldn't want a speech therapist to be making a digagnosis--a ST wouldn't really know how...

    As far as school goes, if they are thinking possible autistic spectrum disorder (and if he's not speaking yet it's not Aspergers, which is another form of the spectrum) then I would want him getting high level services in school--speech, social skills, life skills, academic supports, Occupational Therapist (OT), PT. My son got all of these and the outcome was worth it. He did not go to regular Pre-K. If your son is on the spectrum, he will likely have A LOT of trouble in a regular classroom since he hasn't had any help yet.

    Also, he is NOT spoiled. He has a disorder. Your husband needs to learn that this is a real problem, not a problem with your parenting or a behavioral problem.

    Good luck.
  4. SRL

    SRL Active Member

    A lot of therapy for preschool aged children is based on play so that is not a concern to me. Typically a speech therapist will work the therapy into play time. Play is kids work and it's good for a therapist to meet him where he is instead of parking him at a table and expect him to churn out XYZ for 30 minutes. Now if 8 sessions from now it's all play and no speech that would be of concern.

    If she wrote rule out Pervasive Developmental Disorder (PDD) on his chart that may be a notation for her to address Pervasive Developmental Disorder (PDD) in future appts. Did you print off the screening tool showing possible modertate Pervasive Developmental Disorder (PDD) and show it to her? If so, and she ruled it out there on the spot, or refused to look more closely, I'd be shopping for a new diagnostician.

    Most moms and dads are at odds with each other at this point. If what you were doing discipline=wise hasn't worked by now it's not going to work. Can you get him to read The Explosive Child? I told my husband he either needed to read it or follow my lead. When he saw it starting to work he did a little of both and got on board.

    If you haven't already, this would be a good time for you to contact your local public school district to see if he qualifies for special education preschool. Usually they do a wonderful job and the speech and occupational therapy and behavioral work is built right into the preschool work. Assessments--and if he qualifies--transportation, school, and services would all be free. If you plan to send him to private preschool then yes, I think you should tell them so they can observe him closely for you and so they aren't caught off guard.