New to the Boards - A bit overwhelmed

Discussion in 'General Parenting' started by artana, Oct 23, 2008.

  1. artana

    artana New Member

    My son might have Pervasive Developmental Disorder (PDD)-not otherwise specified. He will be tested, but the behavior therapist watching him at the school used to be part of an autism clinic and recognizes behaviors. I am nervous about posting mostly because I feel like others go through so much more than I do, but I guess I feel like I need some comfort that it's ok.
    Another thing is that as I go through his diagnosis, I realize it's my diagnosis as well. I am constantly feeling like a failure as a mom because I feel like I can't stand up well enough for my kids at school. Emotional conflict leaves me very stressed, worn down, and shivering even though I might not have uttered a single angry word. So now, I feel like I'm a possible Pervasive Developmental Disorder (PDD) parent raising a Pervasive Developmental Disorder (PDD) child and there are moments where I wonder what made me think I could raise kids.

    To my son's story:

    He is extremely gifted. Last year he was in a one day pull out gifted program and he loved it. He was behaving really well in regular class. He would melt down now and then, but I didn't think anything of it because his younger brother was the one having behavior difficulties.

    I had been noticing that he had sensory overload issues when very stressed, but I do too, so I just tried to keep him calm and get him away from those situations until he calmed down. When he is not stressed, he can handle sensory input for long periods of time.

    This year, I moved him to an environmental charter school, because the regular public schools could not accomodate him academically and they promised that he would progress at least a grade level a year, which is huge for a gifted child.

    This year he has progressively gotten worse in school and better at home. Before, his meltdown lasted a long time, now he generally gets himself under control in about 5-10 minutes and apologize to me and we will talk. In school on the other hand, he has been disengaging from almost all group work, has been reading continuously, has melted down spectacularly a number of times, and the teachers are having a hard time getting him to re-engage. The school has a behavioral therapist starting to create a plan for him, an Occupational Therapist (OT) working with him, and we have a diagnosis test in the works for him...but it really scares me to see my child going downhill at school.

    I feel like he's in a spiral. He's learned that he can get out of group if he disengages, because the teachers are not going to handle a meltdown well, but because he gets what he wants, he disengages more and becomes more likely to have meltdowns when reintroduced to a situation he doesn't want. So...suddenly he is not handling situations that he would maybe have been uncomfortable in last year, but he would have been able to deal with. It really worries me, and despite the reassurance from the behavior therapist that when he puts together his plan and helps the teacher implement it, my older son will be worse off than he ever was.

    I feel like maybe I made a horrible mistake in choosing this great school. They are supportive and really wonderful, but he misses his gifted center and I think that maybe I took him from the one thing that made school palatable for him.

    I know this might not really be as bad as many of you have to deal with stress wise. I feel very sheepish asking for support, but I feel very lost and worried.

    Thank you.
  2. totoro

    totoro Mom? What's a GFG?

    First of all welcome! And everyone's journey here is different! There are no rule as to who can ask for help, support or advice! As long as you want it and are willing to listen and try to give back!
    We have all different types of kids here. Some more extreme than others. Some doing better at different times than others!
    Some are doing better because of this place and the support!
    Have you gotten or started the process of an outside evaluation?
    If not I would, by a Nuero-psychiatric and I also feel strongly about an Occupational Therapist (OT) evaluation. Both outside of the SD.
    You then get a unbiased feel for what is really going on with your child. If the person doing the testing is good.
    I would call around, ask questions. Read up here! And start researching...
    THis is a long journey.
    We all feel weak and shakey on many days.
  3. nvts

    nvts Active Member

    Hey Lya! Don't feel sheepish or shy - sometimes we have some fun goofing around on the board. We are always looking for or giving support. Don't feel like anyone's got it worse than you - there's always going to be someone who has it worse off - that shouldn't stop you from asking for help or even a sounding board.

    I'll stop in later tonight - we're in the throws of spelling test rehearsal (if I call it studying, I'm a dead man! ;)).

    From what you described, you might want to dig up a little dirt on kids with Asperger's Syndrome. He sounds A LOT like my boys!

    Talk to you later!

  4. Andy

    Andy Active Member

    Welcome Lya. You are in the right spot. Come and vent anytime you want to. Ask for input on anything. We will help you through this.

    Don't feel that you are a bad parent. None of our kids come with instructions and once we do figure something out, that stage passes and we are on to a new challenge. You must always follow your instincts. You spend more personal time with your child than anyone and you know your child better than anyone.

    Come by the Watercooler also - that is were we live our non-difficult child lives! Cause we know we are more than just a mom. :) We would love to see you in any section you feel comfortable. There is a health section also for healthy living ideas.

    Once in a while we have cyber parties - It has been awhile - I think we are overdue.

    Hope to see you again soon.
  5. TerryJ2

    TerryJ2 Well-Known Member

    Hi Lya, welcome.

    So, do you think it's because your son truly misses his other school that he's acting like this, or it's a combo of the sensory issues and other things?

    I re-read the note and can't find out what his age is. How old is he?

    Interesting that the behavior therapist at school picked up on some of his issues. I would think that's a good thing.

    I'm glad that your son is doing better at home, at any rate. Maybe it's a bit less stressful at the end of the day.

    No one (or almost no one) makes the perfect choice of schools every single time. It's really hard to tell until the kids get in there and interact. Don't beat yourself up over it. This is all a process, not a one-time decision.
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there, hon.
    Look, I have a son with Pervasive Developmental Disorder (PDD)-not otherwise specified and your son sounds NOTHING like him. Sensory issues alone aren't enough. He needs a total evaluation. Did he have any speech delays? Does he understand social cues? It is rare for a child with Pervasive Developmental Disorder (PDD)-not otherwise specified to function well in school to the point that he could do ok in a less structured charter school. I guess I'm confused. My son had delays in speech, eye contact with strangers, pottying, fine motor, and social skills. He is 15 and just kind of coming out of it after years of intervention. He is finally getting A's and B's (FINALLY mainstreamed) and was asked to homecoming. It took him this long. A regular behavioral therapist probably won't help a kid on the spectrum. They are too literal and don't really do much give-and-take conversation. I especially personally wouldn't trust somebody who isn't in private practice. My experience with my son was that they aren't as good as the private professionals. Maybe your son is an Aspie. Pervasive Developmental Disorder (PDD)-not otherwise specified is different. If your son can do that, I'd question the diagnosis. What do you think?
    Last edited: Oct 23, 2008
  7. Fran

    Fran Former desparate mom

    Hello and welcome.
    Learning to be a warrior mom is a gradual process. None of us were born that way. If your child needs you to advocate, you will learn how to do that. It's easier if there isn't a lot of angry talk. I tended to not approach schools as the enemy or the teachers as the bad guys. I figure they are part of the team to help my son. Sometimes they may not know what your difficult child needs but your son is protected by law to get what he is entitled to receive in school. The school district can't argue with the law. Educate yourself, research, ask questions, check in with knowledgeable parents and go to IEP meetings with your information.
    I am pretty sure there is large autism spectrum research program in your neck of the woods. (I grew up in SW Pa). Once you get your son evaluated, you may want to use them to find out how to help your son.
    We are glad you found us. We may not have answers but we can share what we know and our experiences. At the very least we give lots of support and you will know that you are no longer alone.
  8. artana

    artana New Member

    Hello all,
    Thank you sooo much for all the kind responses. The behavior therapist formerly worked in an autism clinic. He said that my son, who is 7, was exhibiting some withdrawal reactions, and has the sensory issues. So he wanted me to get him looked at.

    I did speak to an autism specialist on the phone. He stopped taking my insurance so couldn't see me, but did some phone consultation. He said that he thinks my son is just exhibiting signs of strong anxiety. He said that it depends on the specialist where the line is drawn, and my son falls into the gray space where some specialists might see him as having Aspeger's or something similar, and others, like the doctor I spoke to, set the line higher between Pervasive Developmental Disorder (PDD) and these anxiety behaviors. He did say that my son would need to learn coping skills, and he could get helped that way.

    My son definitely feels emotions very strongly. He can't verbalize when he's upset, though we're teaching him slowly. But, at other times he is a chatterbox. He also experiences sensory overload issues, but at times when he is stressed more than other times. Or maybe he can handle the sensory input for a while, but eventually the stress of dealing is enough that he gets overwhelmed.

    We are working with an Occupational Therapist (OT) on his handwriting, which is very poor, and she did give me a sensory questionnaire to fill out. He is going to gifted for 45 minutes a week. The behavior therapist is working out an individualized behavior plan because putting him in the corner does not work for him, and when he's having a meltdown, threatening with anything only makes him worse, because he's mad at having done something wrong, and mad at himself for melting down.

    I am just concerned. I know that some of his behaviors are very unlike a 7 year olds, and are more like a younger child's. I know his verbal is much better than anything that is supposed to be associated with autism...This is part of why I am so overwhelmed. I don't know what the issue is. I don't know if he will settle down eventually.

    The practical things the behavior therapist is suggesting meet well with what I think will work with him. He is talking about a more rigid environment with clear rules and clear descriptions of the expectations for him. I think that this fits with my son very well. He has trouble understanding which rules are more important than others and gives equal weight to all.

    I really appreciate having so much feedback,
  9. house of cards

    house of cards New Member

    Just wanted to add my welcome. You have found a great group that will try to help with information, support and understanding.
  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Asperger's kids have extremely good verbal skills. Often they tend to sound like "Little Professors." They do not do well with give-and-take conversations and tend to monologue about their interests (which they are extremely informed about), and they have social problems. The older they get, the worse the social problems become if they are not addressed.
    There is no way to diagnose autism or lack of it over the phone. None. I would find a neuropsychologist (they are in children's and univeristy hospitals) who CAN see your child. Anxiety is such a huge part of Autism Spectrum Disorders (ASD). Without the testing, you won't know what your child has. Rather than a behaviorist who worked at an autism clinic (this is still not an expert) or somebody who claims to be an autism expert (exactly what credentials make this man an autism expert?), I'd go with the neuropsychologist. You can't help your child if you aren't really sure what is wrong. There must be a neuropsychologist in your insurance plan. I'd do it that way. Good luck :)
  11. Pookybear66

    Pookybear66 New Member

    Lya-Welcome! I am also in PA-near Harrisburg so we are somewhat close. Your ds sounds a bit like mine. Mine is 8 1/2 and very verbal and can fixate on something and have a complete meltdown over something so trivial. He writes very poorly. He was just examined by Occupational Therapist (OT) and they said he "just didn't learn how to write well". They are giving him a bit of extra instruction but nothing too urgent to them. He was tested at school and was said to have "a specific disability in reading". I'm still not sure what that means except that he doesn't read well. We are in the process of trying to find a neuropsychologist dr to do a full evaluation.
    Just thought I'd give you a little background. I just joined this board about a month ago. Already it has been a great place to come to vent, ask questions, and get/give support. As they say-"no question is a dumb question except the one that is not asked".
    You may want to make yourself a signature line which tells us all about you in a quick glance (see the bottom of ev1's posts). Also, you may want to read the book that is referenced here quite a bit called "The Explosive Child" by Ross Greene. And again, please kick off your shoes and post anytime you need.
  12. artana

    artana New Member

    I am getting the help of a neuropsychologist as soon as I can call around today and get an appointment. I know neither of these people are experts. I do know this behavior therapist has not recommended a diagnosis for many people in the school, so it makes me have more faith that my child does need to be looked at.

    I know on the phone is not accurate. The Doctor's main question was whether he had friends or not. Which he does. Not sure how relevant this just stresses me that until the moment of that appointment, which might take a while, I'm being bombarded from all sides. I think I will create the parent report that you guys have listed and try to be armed with that.

    I'm also talking to my son, who is smart enough to understand some of what he is doing, even though he says he can't help it. Still, I think discussions help him put things in perspective in his mind.

  13. 'Chelle

    'Chelle Active Member

    Hi Lya and welcome to the board. I too have a son who's been diagnosis'd Pervasive Developmental Disorder (PDD). We didn't get this until he was 11, but your story sounds very similar to ours. My difficult child's big problems in school started when he was 7, and the school psychiatric said many of his behaviors seemed like anxiety. It is partly, caused by his sensory overloads and that "not getting it" feeling that being in a school environment can cause. Our first evaluations didn't give any kind of diagnosis, and for the next 3 years he was in various school programs, that it turned out in the end were all the wrong ones for him as they focused only on his behavior and not what was causing it. He was in therapy, and I realized once he was diagnosis'd that much of what she did with him was a help in the Pervasive Developmental Disorder (PDD) area so I'm thankful we had her. The only thing mentioned was he might be ODD. Finally I said this is not working, came close to breaking myself and found this site. I got good suggestions here, requested reevaluations and he was seen by a child psychiatric who specialized in developmental disorders. Finally with his diagnosis, a teacher who understood him and accomodations at school we were able to get him back in regular school and now at 15 and in grade 10 he's doing ok. Better every year, his resource teacher just phoned yesterday and said how he's having a very good semester.

    It's good that your son's problems are being recognized earlier, so many of our smart, high-functioning kids don't get the right diagnosis early enough and have to struggle so much. The autism spectrum is just that.... a spectrum. No 2 kids with the diagnosis are exactly alike. My difficult child has friends, not a lot, 2 very good friends, and is friendly with other kids at school, so that's not necessarily a indicator that he's not Pervasive Developmental Disorder (PDD). My difficult child has a hard time making new friends, and told me the other day he thinks parties are pointless LOL. Many of my son's meltdowns in school were sensory related, too hot, too bright, too much noise. Just like you mentioned with your son, they can deal with this for only so long and then it just becomes too much. My difficult child had a hard time learning to tell someone when something bothered him, that things could sometimes be changed to help him out. He did get the accomodation that he could go to a corner of the room, or out of the room, if things were getting too much for him.

    Sorry, talking a bit too much about my difficult child LOL, but your story resonated so much with me. My son too was kinda in that gray area in the spectrum, but I think the Pervasive Developmental Disorder (PDD) diagnosis is the right one. I wanted to let you know that things can improve, and while I used to think my difficult child wouldn't even make it to grade 8, he's in 10 now and getting good marks. There will always be struggles, he will always hate going to school, but he's learned to cope with things so much better. And I just found out in talking with his teacher he's very friendly with a girl who's come from Japan and is helping her with English class. My difficult child, who detests English class LOL.

    I'm crossing my fingers and all for you that with your son maybe getting a good diagnosis earlier that you can get him started learning the coping skills sooner and he'll have good success at school. When they're so smart you always want them to do so well, it's too bad that the other things get in the way. Someone mentioned the book The Explosive Child, and I recommend it too. Helped me learn a new way of dealing with my difficult child that lessened a lot of the problems we were having. I think it helped me learn how to talk with difficult child, so that he could start to verbalize to me his frustrations.

    Good luck with your evaluations, hope you get some answers you need to help your son. And again welcome to the board, it's a great place for support when you need it.
  14. luvshihtzu

    luvshihtzu New Member

    Hello, sorry, I've never been on a site like this before and happened to stumble on it. I have no idea how this works, but I've been looking for advice about my son for so long. I don't know what "difficult child" or any of the abbreviations mean. Am I in the right room?
    Anyway, my son is 16 and has been a big problem his whole life. We know there is something wrong with him, but he has only been diagnosed with ODD. It seems like more than that. I'll write more about him if I find out I'm doing this right.
    Thanks so much!

    Sharon/Lancaster CA
  15. TerryJ2

    TerryJ2 Well-Known Member

    Hi Sharon, welcome.
    Start a new note and introduce yourself. Actually, go to User CP and create a profile and signature and whatever else you can fill in, and then post a new note.
    Yes, you seem to be on the right bb. But no one will see you at the end of this thread.
    Sounds like you desperately need a good diagnosis.
    Take care.