Need Advice and to vent

Discussion in 'General Parenting' started by BTCM, May 17, 2007.

  1. BTCM

    BTCM New Member

    I'm basically new here. I've written in on a couple of occasions, and read here often. My difficult child is an 8yr old boy. There have been questions with him since he was 3. Had him evaluated at 4 for asperger's. Although he showed some characteristics, he didn't fit the bill. They suspected some Sensory Integration Disorder (SID). We've been struggling through the years, but getting by. There are always questions and problems that arise in school, but then it seems to just quietly go away. Well this yr has been different. He is really having much more of a rough time. I feel like him and I hit a brick wall. We were fighting something terrible. I feel soooo bad about it. But feel like I am really having trouble with it all. I started taking him to see a childhood phsycologist back in January. It has been going well. The dr and difficult child seem to have a good realtionship and my son really enjoys going and venting. Which is a real blessing. A couple of weeks ago he got in to some trouble at school and said some horrible and threatening things about his teacher. Which he really doesn't like his teacher. But then again he really doesn't like any authority figure at all. The phsycologist was concerned with the matter and suggested that maybe it's time to try him on some medications to even out his moods more. He said right now the things he says are just empty statements out of anger, but as they get older is when you really need to start worrying. I am having such a rough time with these statements. They just blow me away. I asked the psycologist what we were medicating for. He said a mood type disorder. So I've been thinking about this. In the mean time I've gotten in touch with a neuropsyc, through you guys suggestions on this site. I was quite suprised with the cost of this. And would think about it. Yesterday my son had another rough day with some very tough statements, I called his psycologist who talks me through these times. He again suggested the medications and said the insurance is now really pushing for a physciatrist type evaluaiton and basically want to know why it hasn't been done sooner. I asked the psycologist what his gut feeling on my son is at this point and he mentioned a mood disorder, odd, Sensory Integration Disorder (SID), and he said he could probably put about 5 labels on him. But that is not up to him to do. He said my difficult child has a very different way of thinking. I have to tell you this all blew me away. I don't know if I'm ready for all of this. It all sounds so scarey to me. I thought he maybe just had a few little problems going on. I am so upset, I can't stop weeping. I just want this poor beautiful little boy fixed. I need him to be ok. How do you guys deal with this. It is breaking my heart, and I just don't know if I'm strong enough to do this anymore. I love him so deeply and this just all sounds so final and hopeless to me. I know I will pull myself together and do the right thing, but right now I feel so lost. I am so sorry to go on like this, but you all seem to know so much. Any help or suggestions would be greatly appreciated. So far we've had meetings at school but more just interventions on finding what works for him. Thank you, Tanya
     
  2. Marguerite

    Marguerite Active Member

    Tanya, I know the neuropsychologist is expensive, but once he's been assessed in detail a lot of that expense is an investment, it doesn't need to be done again. The testing is a snapshot of how he performed in detail at this time and age. Whatever is looked at in years to come, that testing and the results will always be there to refer back to, for any expert.

    I think it's time to do this.

    When the psychologist says he has a different way of looking at the world, this doesn't mean anything spooky or nasty, necessarily. A kid with Sensory Integration Disorder (SID), for example, will be more sensitive to certain sensory inputs such as noise, texture, light, sound - it means that what wouldn't be noticed by one person is like fingernails across a blackboard for one of our kids. And it all affects how they relate to people and things.

    Interventions are available, but more accessible when you have an expert's professional assessment. He needs this to get the extra support at school. You need it because you have to know. Whether he actually does go on medications is still up to you, but the neuropsychologist should be able to explain it better for you, specific to your son.

    Marg
     
  3. On_Call

    On_Call New Member

    Tanya,

    First of all, I am sending many gentle hugs out to you immediately. I'm so glad you found this site and at the same time sorry that you had to go looking for it due to your present circustances.

    Second, your little guy sounds very much like our difficult child, who is now 11. We started out at 4 with an asperger's diagnosis and have come full circle back around to it most recently - after a long road.

    I'm sorry this is happening to you right now, but you are stronger than you even know you are. And, it's obvious that you love your son and will do whatever you need to do to make him the most successful.

    Our difficult child has always, and continues, to have problems in the school setting. He has made threats when angry and as he has gotten older and bigger (5' 2" and 125 lbs) we have had to take things more seriously. I cannot tell you that it is an easy road. My original post from 7 or so years ago must be almost identical to yours here.

    The psychiatric evaluation sounds like a good next step. At least you may be given some ideas regarding a diagnosis and some suggestions on where to go from here. It sounds like your difficult child has a good relationship with the psychologist, which hopefully will continue. Do as much research and reading as you can on whatever diagnosis the docs bring up so that you will have as much knowledge as possible.

    I want you to know that even after all of these years, I still get overwhelmed by difficult child's actions and some of the situations we find ourselves in. You will find the inner strength to handle whatever comes your way.

    Hang in there.
     
  4. Sheila

    Sheila Moderator

    We all go through the grieving process. It's hard. Big hug for you.

    Things are not as hopeless as they may seem. Appropriate diagnosis, implemention of an effective multimodial treatment plan -- it makes a difference. It just takes time to pull it all together.

    Medication? That's a really hard one, and it's just one piece of the treatment plan. Definately not a magic bullet. I hate that my son has to take it. But the fact is that difficult child's medication gave him the ability to take advantage of all the non-medicine treatments (numerous), perform better in school, smooth out some social skills and positively respond to behavior mangement.

    You may recognize yourself in "Helping Parents Deal with the Fact That Their Child Has a Disability." http://www.ldonline.org/article/5937

    But first, you need to know what you're dealing with. I'm a huge fan of multidisciplinary evaluations -- there's info on the FAQ/Board Help forum. While you're there, read about how to prepare a Parent Report -- they come in handy.

    When you're ready to tackle the school problems, visit the Special Education 101 forum -- it's another piece of the treatment plan.
     
  5. Crazy-Steph

    Crazy-Steph New Member

    I can fully empathize with you. We have been dealing with our difficult child for years now and are just getting up the guts to get the psychiatric exam.

    husband has been in denial about anything really being wrong with difficult child. He thought he was just a boy who needed more discipline. But, I finally got him to see that we have to know what the real problems are. Whatever they are, we have to know.

    We will still love difficult child, but maybe we will start to like him again, if we can figure out how to help him.

    Just remember, no matter what they tell you, at least you will have an answer now. Then you can move on to bringing back your beautiful son.

    Good luck and we are here for you!
     
  6. nlg319

    nlg319 New Member

    I feel your sorrow. I think that all of us parents want our children to be "ok", and be like other kids. It was very scary for me when all these issues started popping up. I still have a hard time dealing with it. I would say the best thing you can do to help your child is to educate yourself with as much information as possible. You will be your child's strongest advocate. I find this board really helpful. Sometimes I just read, others times I ask for help and a lot of times I just vent!

    Remember through all of this...Take care of yourself!
     
  7. flutterbee

    flutterbee Guest

    I'm sorry you are hurting. It's devastating to watch our children struggle and suffer. I think it's pretty common for our kids to be able to maintain to a certain point, but as they get older and more is expected of them just maintaining becomes harder. And then we see what you're seeing with your kiddo.

    I would strongly consider the neuropsychologist evaluation. It is expensive, but will give you some solid answers. I learned more about my difficult child through those few hours of testing than I did in years of seeing therapists. Will your insurance cover it at all? They told me that typically my insurance would come back and say that it's an educational issue and not cover it. However, I haven't received a bill so it must have been paid. At the very least, I do think it is time to see a psychiatrist.

    I'm glad you found us. Welcome to the board.
     
  8. Sunlight

    Sunlight Active Member

    Tanya,
    when ant was only in grade school I learned he was different. I got so sad and depressed. it was hard tro swallow. then I learned more about ADHD ODD and knew he would live, but he would be a handful. he is still my son and thinks differently. I still love him and have to say it is disappointing to know things are going to be diff than we expect.

    hugs to you.
     
  9. BTCM

    BTCM New Member

    First of all, I want to start out by thanking all of you for your wonderful advice and your support. I know I will pull my self together and do the right thing. Another question I have is because my inurance and the psycologist are now pushing for the physciatric evaluation. Should I start there? Will that give us answers. The nueropsyc. that I spoke to was very nice, but said the price is $2000 and he doesn't deal with insurance companies at all. Do you think because my insurance is looking for an evaluation. I should call them and see if this would be covered? I am just so overwelmed right now. But I do want to do this the right way. You all seem so knowlegable, that I appreciate your inputs and opinions. If these kids get proper diagnosis and help, is there a chance for a decent future for them? Like I mentioned before this is all so scarey to me. Well thank you again for your posts and for listening. Tanya
     
  10. klmno

    klmno Active Member

    I'd call your insurance company- sometimes they will reimburse you, at least part of it.
     
  11. Marguerite

    Marguerite Active Member

    Tanya, I think contacting your insurance company is a good idea. And you can t ell this to them too, if you need to - the earlier these kids are diagnosed, the earlier they get help and the better their chances of NOT costing the health system and insurance companies much more later on.

    For an example of amazing progress, I need go no further than difficult child 3. He was very slow to talk, incredibly sow to even recognise his own name (or that names even existed) and we thought he was deaf, except he could hear a chocolate wrapper crinkle from the other end of the house.

    difficult child 3 failed his first IQ test. We were told he was "borderline" and autistic. He would never be able to go to a normal school and would be some years before we could even think of sending him to ANY school. We were told he would be dependent on us for life and to not expect too much, this was going to be a burden.

    difficult child 3, in fact, is very bright. The problem was, he didn't understand the spoken word at the time and so the testing was flawed (in my opinion). He has since tested as IQ of 145 which we were told was likely to be an underestimate.

    But whatever the numbers are, it's how he is performing that is more important. He works on his schoolwork fairly independently. he is self-motivated. I still need to help him get started (task-changing problems) but he appreciates my help in this and often now can continue on from there. He did today - he finished a unit of English but wanted a change, so chose to do a unit of Science and stopped it in time to do some German, purely to brush up his pronunciation. Then after he had gone overtime with study for the day but finally reached a logical point to stop, he told me he was now going out for a walk because after a day of studying indoors he needed a little bit of exercise.

    He had his day organised, he worked well, he discussed schoolwork with me at various times and he followed through on his organisation which eventually included play time with the neighbour. He then came home and did his chores, went through his evening routine with only minimal reminders and went to bed on time.
    Talking to his teachers today, he's mostly scoring between 8/10 and 10/10 in every subject. He is studying a mainstream curriculum in every subject (although about to change back in geography - separate story).

    Why is he doing so well? Because as soon as we realised what was wrong we set about trying to find out what the problem was, and what to do. A lot of what we did we worked out for ourselves, due to lack of services. He is still autistic, he still has problems and he will need a lot more support than the average kid/young adult (eventually) but his prognosis is much better than anything forecast, because we didn't take bad news for the final answer.

    What you do for your kids - who among us wouldn't die for their kids? They are our life, our future. We want them to be the best they can be, so we do what we can for them when we need to. Doing what we can sooner buys us more time and helps overcome problems sooner, with better outcome.

    I don't know if your son can be helped as much as difficult child 3. Maybe more, maybe less. We just don't know. But what I CAN say - if you postpone the possible bad news, he will miss out on help that could make a difference. The earlier we can start, the better the outlook.

    And the best we can do, is the best we can do. We can't do any more than our best, we shouldn't beat ourselves up for not succeeding, if we gave it our best shot.

    I hope you get some positive news with some useful recommendations.

    Marg
     
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