Scared of what's to come 6yr old (this post took me 2 yrs 2 write *or have the guts 2

Discussion in 'General Parenting' started by lkleiv77, Jan 21, 2012.

  1. lkleiv77

    lkleiv77 New Member

    Hi everyone. I have been a lurker on this board for 2 days now and as read more and more, I find myself stopping to go back and read out loud to husband. There are so many threads on here that I can relate to. In the past I have done research on my own in ADHD, BiPolar, anything and everything and I seem to say yes to 8 of 10 items on a checklist for each and then I find something new and I can say yes to that as well. I am driving myself crazy and I need to stop. I need a plan and that is why I am writting this now - what should my plan be?
    Here is my background.
    My son is almost 6. He has been in daycare since 6 months old. He was a calm baby, good sleeper and eater. He was always and still is advanced academically for his age. Since the day he could talk he told me he saw ghosts in my house. He would say it was a man (I asked daddy or mommy ghost). He was never afraid and I never saw him talking or interacting with said ghost but he did often tell me he was there. The night terrors started at 2.5. If you have never experienced one, I hope you never do. I was ready to leave the house and run to the nearest church. Eyes wide open scremaing and shaking. It was horrible. Those lasted about 1 year and only subsided with husband sleeping on his floor. (Now at 6 he is in my bed when I wake up 90% of the time, at somepoint he comes in during the night) At 3 I was told he couldn't hear and needed tubes in his ears (in hindsight the 20 ear infections in 3 years should have told the dr that a little sooner then when she did a hearing test). The tubes were successful and just a few months ago one fell out. Around 4 years old he started acting out. Not too bad, just not listening and following directions. there were numerous conflicts at dayacre with him not listening, hitting other children and so on. Countless teacher meetings and incident reports came home. He wasn't too bad at home. At the time he had a younger brother only 6 months old. He is kind caring and loving to him (and still is). We would have good weeks and bad weeks. We have had reward charts for years now and sometimes they matter and sometimes they don't. Now he is in Kindergarten and aftercare. his behaviour is either great at one and terrible at the other or vice versa. He is an active boy, very smart. He is loving and still very protective of his brother and sister. Here is a list of what we deal with now:
    *Hitting at school - even the teacher is he doesn't like what she says *Flat out saying no I am not going to do that *Stomping and hitting the walls when told to go to his room *Screaming if he doesn't get his way *If something upsets his in a sad way he crumbles and cries hysterically *Throwing toys at other children at school *Replying I don't know when asked why he did something, he knows its wrong but has this glared look as if he really doesn't know why I wonder if he is even listening to the question *We went to Disney last Oct and he didn't smile once, he seemed to be so concerned with what was next he didnt enjoy anything *Bed time is a hassle and drags on for 30 minutes some times
    Now at home when I tell him no or to stop watching tv and come for dinner its a meltdown, but I just started, you just don't want me to watch, you never let me do anything. He recently has started saying you just want me to always be in trouble, you think I'm dumb.
    Here is a random odd one - he always has his hand either pulling up his shirt or down his pants
    Our family life is good. husband and I are happy and we have 2 younger children. I do not fear for them at all. In fact I find it more disturbing that my son can be so sweet and loving to them and so mean to others. Don't get me wrong at times he is such a little mush ball that you wonder what happens to make him act out so much. He is still ahead academically, he has no speech issues. He is always forgetting things, like returning books to school or leaving a drawing at after care. It always seems to be my fault for not reminding him to get it. I wanted him to forget it or so he says. He is a fantastic artist. Neither myself or husband have any ability there and I have always been amazed at where it came from. I have contacted centers and been asked over the phone if I want a medication evaluation. I hadn't even told them my name yet! I a not against medication but not as a first step. I contacted early intervention at the school and they gave me the run around that his behaviour has improved since his teacher did a reward chart for him - I guess the fact that the same day they told me that he hit is after care teacher doens't really matter since it isnt on their soil. I have been through such a wide array of emotions. I am no longer mad at him. I feel sorry for him. I have read the explosive child and I do believe he would benefit from cognative therapy but I am at a loss as to how to get it. No one seems to want to get to the bottom of the issues, they only want to bandaid the sittuations. I know in my gut that there is something just not right with my little boy. I am afraid that the school will call one day and WANT to talk to me because he did something horrific. I am scared for what is down the road if I don't address the issues now. husband used to be on the boys will be boys bandwagon and has recently come slightly over to my side of more deep rooted issues. This shows me that I am not crazy! I don't really even know what to say to someone when I contact them for help. DoI tell them I think he is ADHD, then they ask if he does good school work and he does. He can focus if he wants to. Is it ODD, he always seems to argue with me. - Example - me - the sky is blue, son - no its gray. me - no its blue. son - yes BUt if it were rainy and the run wasn't out it could be grey. me - yes, but it is blue today. son - BUT if it wasn't sunny... this is a typical conversation we would have. He seems to always need to have the last word. Something his teachers always said, he would try to negotiate his way out of everything. Unfortunatley with some of the younger inexperienced aides it would work. He's a cute kid, blonde hair , blue eyes, he just looks at you and you forget why your mad at him. I am trying not to say that he is cunning, but for a 6 year old - he is and that adds to the fear I have of the future. I don't want to think of where it will go. I guess I have rambled on enough. If there any kind hearts still reading... what do I do. How do I explain to docs and teachers what I want and why?
  2. lkleiv77

    lkleiv77 New Member

    I did't realize how long this was until I saw it posted, I am sooo sorry!
  3. TeDo

    TeDo Guest

    You did just fine. The more information the better so your start was great. I can sympathize with your struggles. We still have days like that and I KNOW what I'm dealing with. Since you didn't really leave me with any questions, I'll save that for someone else to ask.

    You asked what your plan should be. All I can do is tell you what I would do....actually, what I HAVE done. First, find a neuropsychologist to do a thorough evaluation. It usually takes a long time to get in to the good ones. In the meantime, look for a PhD level psychologist with experience with young children. Tell them you know something's not right and you want an evaluation done.

    Second, SEND a letter to the Director of Special Education at your school district asking that your "son be evaluated for possible Special Education services including, but not limited to, academic, psychological, behavioral, Occupational Therapy, and Speech evaluations." Send it CERTIFIED MAIL with RETURN RECEIPT REQUESTED. This starts a Federal timeline for them to evaluate all areas to find what issues are affecting his school experience. They cannot refuse to evaluate him as long as the request is in writing. Keep a copy for yourself and start keeping records of all phone calls, notes, emails, etc with the school both to and from.

    Third, find your own Occupational Therapist (OT) and Speech Language Pathologist (SLP) to do FULL assessments. For the speech, ask them to evaluate his language processing and expressive speech. For the Occupational Therapist (OT), ask them to evaluate his gross and fine motor skills as well as sensory input and processing.

    Hope this helps. I know it is a lot but you need to find out WHY he's acting the way he is and unless THOROUGH assessments are done, you can't help him or get him help. The reason I say to find you own professionals as well as have the school do evaluations is because school assessments are generally very superficial. You need to have something more thorough.

    Good luck and keep posting. Other WISE and more experienced parents will come along. Week-ends are generally slower so hang in there.
  4. buddy

    buddy New Member

    YOu did great!

    Random thought to go with his random shirt/pants behavior... SENSORY issue... could really bug him in some way... sometimes they are ok for a while but at times things bug them.

    ok, now... welcome.... There are many possibilities and highly doubt from what youre saying that this is just a willful defiant child. Just my impression because he has such good moments when he can. when he his comfortable maybe...

    I would say if it was my situation (and you have to decide for yourself) to get a neuropsychologist evaluation, an Occupational Therapist (OT) evaluation and a speech/language evaluation-audiology evaluation specifically looking at auditory processing inc. language processing and it may have had nothing to do with the ear infections but it could have made things worse. The Occupational Therapist (OT) will look at sensory issues...

    The neuropsychologist is a psychologist with specialty training in how our brains are connected to behaviors and they can help sort thru different symptoms. They are not so focused to one area such as psychiatric diagnoses or only developmental diagnosis... they can give a more balanced perspective. It is a long may even get some items to do at home to bring and give them....parent checklists and assessments etc. It can be one to two days usually. WELL worth the time if you are with someone good.

    In the mean time... you have identified that he has trouble with stopping things he prefers and going to a non preferred activity so it may be worth it for you to have a very very strict schedule. If it is made with pictures and matching times to a clock he can check off things himself. If this is too much for your family life, you can at least set routines and allow only X time for certain things, and set a visual timer preferably so he can see it is nearly done... with is being so bright you could use a digital one.

    Once you get a handle on his social skills issues, sensory issues, processing issues etc. (if they are a problem or at least what levels he is functioning at) you can start then seeing which things you want to try... medical, therapeutic etc.

    He sounds like a kiddo who has lots of potential to improve but could end up a real handful! You are wise to be looking around but do not let anyone who does any evaluations know of any ideas you ahve for a diagnosis because it could lead them.

    Many many kids get an ODD/ADHD/anxiety diagnosis early on and this can be real but is often just a start. Much better to check what is driving those symptoms, like motor skill issues, language, etc. He is advanced in some areas and may have limitations that are subtle which frustrate him.

    I know several kids who have amazing artistic abilities who are very high functioning autistic/Aspergers. Have lots of friends but unable to navigate social situations very well at times. Get frustrated are rigid in their ways and have anxiety. Most have super high interest areas (trains, art, space, history, cars, pop stars, japanese anime, etc)...and some have sensory issues. But most kids I have known have super close relationships esp with family and are funny and gifted true, many are academically fine...makes getting help in schools frustrating at times because they dont get how much the organizational issues, rigid thining, social problems, and attention/memory etc. can be making life tricky. Others will discuss other ideas, but this hit me with a few of the things you were talking about. It is just another thing to pay attention to as you go along. May be totally off target but at this point it is worth checking along with all the ideas you mentioned too.

    And wow can I relate to a kid who is always on to the next thing and not enjoying what is happening at that moment. Until something is routine that is the way it is with my son. He also has a need to make sure he checks out everything and is really afraid he will miss out. It is almost a family joke now.

    Anyway, just wanted to let you know I read your post and sure think you seem on top of things with him. I think writing this all out will help people you go to with their assessments. He sounds like a great if not challenging kiddo and lucky to have you.
  5. SRL

    SRL Active Member

    Hi and welcome to our forum. Your post definitely isn't too long--it helps us to give you some possible directions to go looking for help.

    I know you're afraid of what's to come but I think you'll feel less afraid and more enabled once you have some answers. There are signs for a number of possibilities and I'm going to suggest you pick up a book called "What Your Explosive Child Is Trying to Tell You: Discovering the Pathway from Symptoms to Solutions by Dr. Douglas Riley". It's probably not going to give you answers but it may

    I also would like to see you schedule an evaluation for him with a reputable diagnostician in your area. You will need to schedule an appointment with your pediatrican to discuss developmental issues and ask for a referral--they like a heads up so they leave more appointment time than let's say just checking for a sore throat. Be sure to make a list of concerns to bring in with you.

    Here's an article about getting a referral from your pediatrician. This is specific to Autism but is applicable to most any disorder usually represented here.

    For specialists who usually do a thorough job before talking medications we suggest a pediatric neuropsychologist or behavioral/developmental pediatrician, but that may vary in your area or due to your insurance coverage. (Personally I wouldn't start with a therapist or psychiastrist.) I'd get as much done privately as reasonable and that I had insurance coverage for--a primary developmental/medical workup, speech, and occupational therapy should give you a lot to start with. I mention speech even though you're not suspecting that area because sometimes there are things we don't tune into (like ability to pick sounds out from background noise) that have a lot of impact in various settings. If he hasn't had a recent audiology appointment that should be done as well. Not following instructions can be a sign of auditory or language processing problems, both which fall under audiology and speech/language.

    I would also send a letter to the school district requesting an evaluation. This would be in addition to the medical workup. This will get the ball rolling on that end. They should take the medical assessment results into consideration.

    Start a notebook and keep copies of all paperwork in there to bring with you to various appointments and meetings.

    Don't sign to authorize release of diagnostic reports to the school district. Reveiw and then deliver yourself if you agree with the contents.

    When you say he's academically bright, exactly what are you seeing? As in way ahead (reading at a very young age, doing advanced math, unusual geeky interests for his age, etc) or just academically doing well for his age?
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there, hon, and trust me...we understand.

    One thing stuck with me and I can't get that out of my head. Your son thought he saw ghosts and had night terrors: Do you feel it is possible he has hallucinations? Does he talk about people who are not there telling him what to do? Is he afraid to go into rooms by himself? Does he ever talk about "imaginary friends" that he seems to think are real? Ever complain about voices in his head or seeing things BEYOND the ghosts? That would be soooooooo terrifying to a little one.

    Is there any thought disorders/mental health issues on e either side of his GENETIC family tree? I know some people are thinking Aspergers and he could have that, but I'm wondering if it goes deeper than that. There are children who hear things and see things that are not really there and they really need help to bring the hallucinatnions under control.

    Welcome to the board. So sorry that you had to come here though.
  7. InsaneCdn

    InsaneCdn Well-Known Member

    What kinds of things were happening in his life, when the night terrors started at age 2.5?
    I always hate to bring up this angle, but... it does happen, and the effects are enormous... is there any chance that he has been abused at daycare? Not current... but back around the 2.5 age? Because, that seems to be when the behavior started going downhill. And, while abuse is horrific at any age, the younger it is the worse it is, because they have no way to communicate, no way to handle it, no way to process it...

    If there is ANY chance at all - or maybe even if you don't think its a problem, but just to rule it out - please get a referral to a therapist who specializes in treating young children who have been sexually abused.
    Not just any therapist. Not just a therapist who specializes in young children. They cannot help, and will make it worse.
  8. lkleiv77

    lkleiv77 New Member

    Thank you all so much for the quick replies.
    The ghosts - here is the odd part, right after it started, we had a stuffed ghosts on our front porch for Halloween. L said, its Halloween, why do we have a snowman out? We told him it was a ghost not a snowman and for 10 minutes he insisted it was a snowman, that wasn't what ghosts looked like. He hasn't mentioned it since he was about 4. I am the type of person that does believe there are powers out there that could be watching us and keeping and eye out so as scary as it was at first, it didn't really bother me. He never interacted with "it" and he never seemed scared. I can be 100% certain that there was no abuse at daycare. I was very closley involved with the school and the people he would have interacted with. With the night terrors, I would always hear him tooting. Research told me that this was normal - mostly for boys starting potting training. Their bodies would be starting to recognize "having to go" but not enough to wake them up to do it. Hence the terrors. He still has very restless sleep. He is in the bottom of a bunk bed and I can't forsee anytime in the near future I would allow him to go to the top. The acting out all seemed to start when I was pregnant with my middle guy. Of course that was the reasoning everyone put to it. L was not at all upset by E coming along, in fact he was overjoyed.
    When he was little I would call him the mayor. He could walk into a room and start playing with anyone. It isn't' like that now. He seems to preffer to be alone and play. I think it has gotten to the point where he has to because no one wants to play with him because he can be so mean. He can be (dare I say the word) a bully. On the playground he would throw rocks at someone, I honestly think he is just playing and not trying to hurt them. Or he is just that kid that is trying to nudge you along to talk during class not caring if you will get in trouble. I have tried to explaain to him what a bully is and that people will not want to be his friend. He is sad for a minute then he (in the middle of this conversation) says, can I wear my red pj's tonight? Like we weren't even talking about something. It has gotten to the point where kids don't want to play with him and that kills me! If people could see him at home with his brother 3 and sister 1 - he is so different. If his brother took his favorite drawing and ripped it to peices and I was putting him in timeout, L would come and scream at me and be angry with me for putting his brother in time out. L would take the last bit of candy out of his mouth and give it to E just to make him happy. Obviously this doesn't do well for teaching E, lol. He is just so sweet and cuddly and loving when he is in a good place, but it changes so quickly and it seems to change much more randomly these days. I used to think he had no remorse for doing things (hitting kicking, stealing) now I just think he doesn't know why it was wrong until hours after he does it.
    Like I said earlier, my head is just so clouded with all of these actions and all the reading I have done that I can't be sure I am reading more into certain things then I should be.
    Here is an example from just tonight - Since L was downstairs playing so nicly on the computer and E was upstairs enjoying what he was doing I let them have an extra few minutes b4 bed. I did let them both know it was extra bcause they were being so good. When it was time I called L up and he unexpectedly came right up with no moans or fights. Getting pjs out he asked if he could have dessert. In my effort to pick my battles I said yes, lets just do jammies 1st. He moaned and whined and said "FINE" and proceeded to dramatically kick dwn his pants and then rip them off all in a giant huff" Calmly I asked why he did that, I had said yes! He just kept saying, I don't know.

    As far as the hands in his pants, I made a mental note for today to tell him to stop each and every time I saw it. Finnally the last time he said would you stop telling me that, I'm itchy. I told him that if he was I need to make sure he is okay since he shouldn't be that itchy all the time. He took his hands out and not a second later was scratching his head. - could this be some sort of coping thing?

    Someone mentioned Aspergers below and I have though of it myself. We were in burger king one day and a light was flashing as if it was ready to blow out. He kept saying to my mother and I - the light is flashing, look look. He didn't stop until we all looked and acknowledged it. We told him it was probably going to die and someone would cahnge it. He proceeded to insist we told someone immediatley. Luckily we were able to distract him with something else.

    Well, I think I will be up for the next several hours checking my insurance plan for some names Occupational Therapist (OT)'s and Nuerophsys - thank you all so much.
  9. SRL

    SRL Active Member

    If Asperger's is something you are considering as a possibility, then you'll want to have a speech/language evaluation done too. They will be looking for such things as language and auditory processing issues and appropriate social speech (the latter is usually a huge hurdle for children with AS).

    Repetitive hand motions such as you're describing could be due to a coping response to sensory processing issues but also could be tics. Here's a list of more common tics:

    Since he has restless sleep, I would also request the pediatrician refer him for a sleep study. I don't think you'll find answers to all of his issues there, but there is a very strong link between behaviors and sleep. Restless sleep could mean there's something like Restless Leg Syndrome going on, which is very disruptive to restorative sleep.
  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    The second post sounded a lot like Aspergers to me too, although more or mimickers could be going on too. I really do feel that a neuropsychologist evaluation would be a very good thing for this child. He is rather complicated and different, but so are most of our kids.

    Keep us updated!
  11. buddy

    buddy New Member

    I agree second post confirmed what you were saying in the first (Yeah, I was one of them who mentioned it, sorry)...and I can see the sensory thing. Itching has always been an issue for my son and neuro says it can happen with kids who are wired like that. He feels things differently and it registers in a different way (by the way, she is mom to an aspie)... Dont let anyone tell you because he can interact with his sibs he is too social. Many kids with autism do have some successful relationships especially because their sibs grow up with them and are simply used to things being on their agenda and so naturally adjust you dont even notice it because it all runs so smoothly you may not realize the dynamics going on. His struggles with things not going on how he plans them in his head sound very familiar.

    Oh, the itching again.... my neuro said, can you imagine being nice to others if you had a for example... yeast infection forever????!!! Not that this is the cause of everything but what a layer of issues to have to deal with!

    My son scratched his head and his bottom would get itchy and he has had multiple exams across professions and nothing is wrong. now that puberty has hit, there is additional itching from the hair we other reasons to itch Know what I mean???? Poor kid. He hates it.

    When you go to an Occupational Therapist (OT) or speech lang person, make sure they have experience with aspergers/high functioning autism so you dont have to endure the ...he is too social, he makes good eye contact etc...comments. If they have trouble modulating social situations in different areas, they can be on the spectrum. Your son, from what you have said sounds like this is an issue. Not bossy, just can't take on the other's persepctives well, even when you try to is all rote, not a true understanding inside.

    Best of everything to you.... if you can get to the bottom of things, whether spectrum stuff or other little pieces that cross over but when all put together, add up to big struggles, you will be able to get therapy and support. Keep us in the loop, will be nice to know how he is/you are doing!
  12. Ktllc

    Ktllc New Member

    I don't have a whole lot to add, just: welcome!
    I know the feeling others give you like "crazy mom" or "this kid looks too normal".
    The problem with invisible disabilities: they are INVISIBLE. It take more than just looking at the kid. You need to digg, analize and digg deeper again.
    husband even had a comment about that: "I thought we were done, but apparently we can go even deeper yet. We have not reach the bottom...".
    It takes several experienced eyes and it takes time. All of it being a very frustrating but necessary process.
  13. lovemysons

    lovemysons Well-Known Member

    Just wanted to say I think you are a very brave and wise mom to follow your gut for your little guy.
    You have been given alot of great insight and suggestions here and am sure you will follow up.

    Hugs and Welcome to the board.
  14. Scarlettudc

    Scarlettudc New Member

    My son sees the angel of a dead parishner from church. We do believe in angels. He also sees the devil. It is like the Donald Duck cartoon with the good Donald on one shoulder and the bad Donald on his other shoulder. Only this angel is all over the place. When the man died, is when my son started to see him. We thought that when my divorce was over and I had full custody, that the angel would go away. He hasn't.
    My son is a 6 year old in a 14 year old 150 pound body. He hits and kicks and hurts us at home, although it is mostly his sister he goes after. She is almost 13. The doctor is recommending a boys home for him now. We can't even find a decent place in the tri-state area. I am afraid that he will really hurt his sister before I get him in some place.
    Last edited: Jan 24, 2012
  15. buddy

    buddy New Member

    HI Scarlet, I hope you post a thread of your own too. sounds like a scary situation. I do believe too that there are some kids/people who are more sensitive to these things. But I also believe there are some, those who have serious behaviors and other mental health issues who need care regardless of if it is true for them or a symptom of mental illness or seizures.

    Your child is bigger than my 15 year old son! I can't imagine that a child so young with such impulse control issues can be happy living like that I hope you are able to find a good residential setting for him. When you say "boys home" do you mean a therapeutic place where they can work with him to help him work on skills to function more appropriately? I really pray you can find such a place. It would be hard to have him far away but the best placement is the most important thing. I too would allow my son to go further away for the most appropriate placement.

    My best to you, hope you post a thread.
  16. Confused

    Confused Guest

    Hi lkleiv77,
    Everyone else has already told you great advice.Your post was very helpful in understanding your situation.:) You were already told to keep the papers on everything,so continue daily journals good or bad. Hugs
  17. lkleiv77

    lkleiv77 New Member

    Thank you again for all of the wonderful encourageing advice. We have an appoint for the middle of February with a therapist at our area hospital. The therapist is inthe Behavoiral Heath Center. Apparently they will meet with him and then advise if testing will be done. Hey, its a start!
  18. SRL

    SRL Active Member

    Good for you for pursuing an evaluation. I will caution you that if you are in the US, what we're often seeing reported here here are behavioral therapists offering to help the parent work on improving the child's behavior. Therapists are not qualified to do evaluations and not suggesting needed assessments in the various disciplines that the child needs. This clinic may be an exception and your pediatrician may have referred you there as a stepping stone, but be sure you aren't just going there for behavior help. Behavior help without knowing what the underlying cause of the problems is along the lines of giving medications to someone for an unknown illness.
  19. buddy

    buddy New Member

  20. TeDo

    TeDo Guest

    Ditto SRL!!!!! I would be VERY curious what the "therapists" credentials are?