New here... a long introduction

Discussion in 'General Parenting' started by Elret, Apr 20, 2011.

  1. Elret

    Elret New Member

    Hi everyone! I am so excited to have found this site.

    A bit about us - I am very happily married with two kids and live in Ontario. My husband is a teacher and I am a (very unsuccessful) aspiring writer. I have had to take a long-term leave of absence from my "real" job while we try to get things figured out with our difficult child. She is almost 5, beautiful, smart, funny, and wonderful. We also have an almost-two-year-old son who so far at least is a easy child. (Though I admit to watching him probably more than I should for signs of impending GFGness...) My husband and I both have some bi-polar disorder in our families and I was an explosive child. When I was about 8, our family doctor suggested removing caffeine from my diet and from then on I was a easy child. My husband was always a easy child.

    daughter was a relatively easy baby - ate and slept beautifully and was happy and healthy. She has been on-target or early with all of her milestones, and has always been very advanced verbally. I stayed home with her for a year, then my sister lived with us and watched her for the next 18 months. daughter always had a bit of a stubborn streak, but no issues at all. She was involved in various mommy-and-me activities and had playdates regularly. When she was 2.5, my sister left and a friend of the family watched her at first. I remember the first day I picked her up, the friend said, "She is too easy! So polite and well-behaved!" And I was not surprised to hear that in the least, as that had always been our experience as well. By the end of that first week, the friend was no longer willing to watch her because she had started hitting the other kids. We put her in another home daycare and that lasted only a few weeks, during which there were many days I had to leave work to pick her up early because she was having tantrums that disturbed the other kids. We were finally able to find her a spot in a large centre where she seemed to thrive (though still had tantrums regularly). At that time we were able to sort of brush it off as her just being a typical two-year-old and sort of pooh-poohed the two home daycares who hadn't been able to handle a cranky two-year-old.

    When she turned three, her brother was born and after a very brief adjustment period (for about two weeks she would give him a casual smack every time she walked past) she was, and continues to be, absolutely fantastic with him. We kept her in the daycare a couple of days a week over the summer because she enjoyed it and it gave us some time to adjust to the new baby, then in the fall she started attending preschool 3 mornings a week. Her tantrums continued at home and at school, but everyone just told me oh, 3 is really worse than 2... she'll grow out of it... After about a month, the preschool teacher sat me down and said I should have her checked out by the family doctor. We did, and were told that the preschool teacher was overreacting and that daughter was just fine.

    The tantrums started increasing in frequency and intensity, and we started journalling. We found patterns that seemed to imply a connection with food, and we tried gluten-free, casein-free, and eliminating additives. The only thing that seemed to make a difference was the additives and we still have her on a very strict diet of what we call "clean" food - no MSG, artificial flavours or artificial colours which seems to help substantially but has not been a cure-all. We have also noticed possible connections with the weather. The other thing that raises a red flag for us with our family history of bi-polar is that there are distinct cycles. She will go weeks or even months being completely perfect, then weeks of nightmare behaviour, then we get "her" back again. It's not just the tantrums, either. When she is in a "bad" period, she is just...different. It's very hard to explain, she's just not herself. She's not exactly miserable, but she's not cheerful and pleasant either. It's sort of like she's "non-pleasant", not all the way UNpleasant, but a sort of lack of joy. She reminds us of a sterotypical sullen teenager sometimes. When she is in these periods, she has some sensory issues - picky about food, clothes and having her hair brushed.

    We went back to the family doctor the January of her preschool year and pushed until we got a referral to a pediatrician. She declared her ODD, though admitted at 3 she was too young for an official diagnosis. I am not really ok with the diagnosis of ODD - if anything I believe that it's a symptom of other things as opposed to a diagnosis in itself, but in any case she said to come back if things got worse.

    We had a very good summer - she was so good that we really thought we were through it. She was 4 now, and we figured maybe everyone had been right after all, that 3 was the new 2 and now she had grown out of it. In the fall, she started junior kindergarten. We had her enrolled in the school daycare and were easing her in in anticipation of my return to work in October. After the first week, we were told we would need to find other care as they were unable to handle her behaviour. At that point, I took a leave from my job as we just couldn't go through it again, the looking for a daycare, the constant calls to come get her early, the stress of wondering what it would be this time every time the phone rang. She was doing ok in kindergarten at first, and the teacher was reasonably prepared to cope with the tantrums. But then she started running off in the middle of tantrums, and we started to get calls to come pick her up early. The school is as supportive as I could hope for, but it's a very tiny school and they just don't have the resources to manage her, and without a diagnosis it seems impossible to get extra resources.

    We went back to the pediatrician, who confirmed her earlier opinion of ODD, and said to pretty much just deal with it. With some pushing, she eventually sent us to a cognitive behavioural therapist, who has referred us to the developmental pediatrician she works with. We're booked with him, but our appointment isn't until September. Meanwhile, we get called to pick up daughter from school as often as 3 times a week during "bad" periods, and while things at home are generally better than at school, she does have some extreme meltdowns at home too. She is not usually physical, but at school she has hit at her teacher and principal a few times (it's usually them being caught in the way of her flailing as opposed to her actively trying to hurt them, but not always) and a couple of times at home she has very deliberately hit at me. She also says really hateful things in her rages.

    She finds it almost impossible to wait her turn or share. She loses it instantly and over almost any trivial thing - not being able to get her zipper up, making a mistake in a drawing, her cookie cracking. She loves playing with other kids, and on playdates or at the park does as well as any kid her age, better than many even. At school she is starting to be shunned a little due to her outbursts and it's sort of a vicious cycle for her - she gets upset because kids won't play with her, and then the kids won't play with her because she gets upset, etc. One of her main triggers at school is not being able to sit beside the person of her choice during circle. Basically, she wants every little thing to go exactly her way and loses it instantly and intensely when it doesn't. Her behaviour has never, ever gotten her what she wants, yet she can't seem to get her head around that.

    It's beyond exhausting and heartbreaking. She is such an amazing kid! It kills me how hard things are for her. My staying home has been the best thing for us all though, the stress level in our house is a fraction of what it used to be. We are also very lucky that my husband and I have been the strongest team I could imagine.

    Whew. I think that's about it... A couple more random things:
    - we've read about six million parenting books... currently revisiting The Explosive Child and 1-2-3 Magic.
    - on a waiting list for an anger management workshop for 4-7 year olds
    - she sometimes has trouble making eye contact, usually just when in trouble or upset
    - she often speaks too loudly and has started asking people to repeat themselves a lot... booked for a hearing test next month
    - she occasionally has bouts of mild incontinence not related to a Urinary Tract Infection (UTI) - not just nighttime bedwetting, but small leaks throughout the day and sometimes full pant-wetting. This usually lasts for two or three days and then goes away completely (though she is still touch-and-go at staying dry through the night)
    - she sometimes will suddenly shout out a bunch of nonsense sounds. Not so much like a tic, more like some crazy excess energy suddenly bubbles up and bursts out. She seems to be in a certain amount of control of it, like she's just being silly, but it also seems to be something she feels suddenly and strongly compelled to do at times. She would never ever do it say, in the library or at a movie.
    - she fits the description of the inflexible-explosive child almost to a T, the only thing missing is that she does not generally feel sorry for the things she says and does

    I'm so sorry this is so long! I can't tell you how happy I am to be here... people just don't get it and it's such a relief to find a place where I don't feel defensive and worried that everyone is judging me and assuming I am a horrible parent!
  2. rlsnights

    rlsnights New Member

    Well, first thing - I would dump that family doctor and the pediatrician. You do need a pediatrician in my opinion. But you need one who gets mental health issues in children. Clearly that one does NOT.

    With a family history of bipolar and this behavior - well it just screams for further evaluation in my opinion. If it were just at home I could kind of see waiting but if she's being kicked out of preschool for aggressive and out of control behavior, now including running away??? How do you spell malpractice?

    Have you done any mood charting over an extended period of time? If not, I would start that right away. You want to track both up and down each day rather than try to give an overall number to the day. If you want more advice on tracking, just ask. I would suggest tracking up and down moods/energy levels, sleep and naps (how long and what times), level of irritability, whether she got sent home that day, any medical issues like illness or antibiotics, any special events like travel out of town or birthday parties. Whatever you think will help and that are particular difficult or hallmark behaviors.

    Next, I strongly suggest you get a neuropsychologist evaluation of your little girl. This is a comprehensive assessment of intellectual, emotional and developmental aspects. Often takes 8 to 10 hours of assessment plus interviews before and discussion of results after the assessment. $$$ typically $1,000 to $2,000 if you have to pay for it yourself. Ideally it should be paid for by your health insurance. Given the difficulties you have had getting referrals I expect you are going to continue to have trouble and may want to try to find a way to pay for this yourself or get help from grandparents/relatives maybe. It may be the best money you have ever spent or will spend for quite some time.

    The developmental pediatrician may be helpful but they are usually focused on identifying autism and that does not sound like it is the issue here. Her relatively normal social development as you describe it is atypical of kids on the spectrum. That doesn't mean she doesn't have some spectrum issues or has an atypical presentation. Just cautioning you not to count on that assessment to be comprehensive enough to give you good info.

    You can also look at taking her for evaluation by a CHILD psychiatrist (psychiatrist). A psychiatrist can diagnose and prescribe medications if that seems appropriate. Frankly, if she's running away from school at age 4 you are probably going to be faced with that decision really quickly. psychiatrist's are not any good usually at helping you with behavioral measures or practical stuff like school. They just don't have time.

    You are absolutely entitled to an evaluation for special education services from your public school district, assuming you live in the US. She is old enough that she would be assessed through the public school rather than early intervention. You get that by writing a letter to the special education department asking for an assessment and stating the things that concern you and why you believe your daughter is going to need help in order to benefit from a free and appropriate public education. The school's assessment will be focused on the school's priorities and should not take the place of a neuropsychologist assessment.

    It sounds like you are taking the realistic measures some families resist in dealing with your little difficult child. Many families find that they cannot have both parents work outside the home and that close supervision is always necessary. High school is harder if anything than the early grades. Sorry to break that to you.

    Has she actually been tested for celiacs? Are you certain that her diet is truly gluten-free? I know this can be very hard to accomplish and some people are much more sensitive than others. The University of Chicago has a fantastic program and website about celiac's that you might want to check out.

    Welcome to the board. Sorry you needed to look but glad you found us.

  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I'm going to ditto Patricia here on that neuropsychologist...and to dump the pediatrician as a go-to person for your daughter's behaviors. Pediatricians are good for colds, but they don't have much training in childhood disorders. NeuroPsychs do.

    Keep in touch and let us know how things are going :)
  4. tictoc

    tictoc New Member

  5. HaoZi

    HaoZi Guest

    She sounds a lot like Kiddo, too. While mine has a diagnosis of bi-polar, psychiatrist doesn't believe that's actually the case because she doesn't have actual manic periods, just "normal kid" phases and that she's really uni-polar depressive from the Asperger's. However the medications that help her are only covered if she has a bi-polar diagnosis on her chart. Her moods are subject to changes in weather, season, food (especially highly processed stuff like the corndogs she loves so much), allergy season, moon phase, you name it. Bottom line in my Kiddo's case is the Asperger's is likely most of it with the other issues being part of it or stemming from the struggles with it. I had to fight tooth and nail to even get her tested instead of just being a human guinea pig for medications geared towards symptoms alone. She's highly intelligent, was speaking in full sentences before she was 2 with wonderful grammar and enunciation compared to her peers. Can pronounce the Latin names for animals better than I can even when I'm looking at the phonetic spelling.

    It was other parents of high-functioning autistic kids that watched her and asked me if she'd been checked for it. She was 4 the first time that happened. I looked at my bright (if sometimes temperamental child) and said "No way!". As she got older and was held to higher expectations and more complicated social situations, I started seeing more temper than child.

    She's 9 now. The final verdict - we're BOTH high functioning Aspies.

    On a side note, if you've roamed these forums much you already know most of us consider ODD a symptom and not a useful label or diagnosis, so you're far from alone here!
  6. Elret

    Elret New Member

    Thank you all so much for the replies!

    I only have a second so I apologize if I miss something, but a few quick thoughts in response:
    - I have wondered off and on about autism spectrum but have been told by doctors and a good friend who is the mom of an Aspie that it seems very unlikely based on what they see of her so it's sort of at the very back of my mind...
    - Nope, she hasn't been officially tested for celiacs and I do admit that our attempt at gluten-free was probably not as strict as it could have been, but she doesn't have any physical symptoms that seem to match so I guess I just didn't have my heart in it... Should I reconsider?
    - She never seems flushed or unnaturally happy, I'd say... This is really a perfect description:
    - She has always slept like a champ, down easy then out cold til morning. We do wonder about the quality of sleep sometimes though, as she seems really tired at times despite full nights of sleep, complete with circles under the eyes and yawning.
    - I would like to do more intensive journalling/charting, but I don't know where to find the time! I'm especially interested in the weather right now... Any tips for how to get it all down?
    - I would LOVE to get a neuro psychiatric but we spent so much on the CBT that we'll have to be really careful about finding the right place. I mean, obviously I would spend whatever it takes to get the right help, I'm just wary of further throwing money down paths that lead nowhere...

    Thank you all so much - I just can't tell you how nice it is to be able to talk like this.
  7. AnnieO

    AnnieO Shooting from the Hip

    Elret - welcome!!!

    I know the thought of spending $$$ on a neuropsychologist is offputting. Honestly? I don't 100% agree with what they told us about Jett - BUT - since his diagnosis, we've been able to get some supports in place that we could not have, before. And It's not that I think they were wrong - I know the child has Fetal Alcohol Effects (FAE). Maybe not so much Fetal Alcohol Syndrome (FAS). See what I mean?

    Of course, I live with him. So clearly I will see things the doctor won't.

    I would say - if you post here regularly - you might see patterns. Onyxx has her blow-ups/rages worst in the spring, and to a lesser extent, fall. So far, that has held true even through this year (though I was hoping it wouldn't). And I noticed this while trying to put together a history for her, using many of my posts from the board. Just one way of keeping track. Not perfect, but available.

    Hugs - and welcome, again. I don't know a LOT, but I've learned most of what I know here!!! (And what I didn't learn here? I got pointed to - from here!)
  8. rlsnights

    rlsnights New Member

    So I am going to take you in a different direction based on some of your comments about her health and sleep. Since I have a child with significant hearing loss issues from a very early age who also has behavioral problems I may be projecting onto your description things from our own experiences with our difficult child 2. So take these comments FWIW.

    Fatigue due to poor sleep is a problem for kids but grownups rarely realize that the child is having problems. And lack of sleep can explain a lot of behavioral problems in children - especially younger ones who don't have the insight to say - I'm irritable because I'm tired.

    Which leads me to your hearing test comment combined with the weather thing.

    I am wondering (based on personal experience with my son) if she is having episodes of sleep apnea possibly caused by enlarged tonsils and/or adenoids or some other physical factor. Weather - specifically low/lowering atmospheric pressure - can cause significant worsening of sleep apnea if she has this.

    You can easily check for this by simply going in her room once she is sound asleep and checking on her breathing. If she is having periods where she isn't taking a breath at least every 10 seconds then she may have sleep apnea. I would check her over several days and at various times of the night if you don't see this happening at first if it's worsened by weather.

    Another sign of sleep loss is morning headaches. Again something hard to identify in younger children.

    Does her pediatrician do any kind of screening test for hearing? If they can, this might be something you want to ask them to do now so you know if there's a significant hearing loss. It's really, really important to catch this and figure out what's going on as soon as possible in a younger child who is still learning and making sense of the sounds of speech. Having excellent hearing through about 3rd grade is very important to developing the ability to spell and read because of the need to recognize what are called phonemes in speech.

    If she is having even mild-moderate hearing loss with any frequency then this may also be contributing to her behaviors.

    Up to 30+% of kinder and 1st grade students children will be experiencing a mild to moderate hearing loss at any one time in a classroom setting due to transitory factors such as colds, ear infections, etc.

    I have to run right now. But I think you would be wise to go back to her pediatrician and stress these signs of physical problems and see if you can get the hearing test moved up or at least an in-office basic screening when she's having a day where she's "loud". And if you find that she has signs of sleep apnea you should definitely bring this to her pediatrician's attention and ask for a referral to an ENT.

  9. Confused

    Confused Guest

    Hi Elret,
    Wow, you have been threw a lot already. So your daughter is now 4 and she has a lot of things going on with her. See if you can get the home daycares and pre-schools to document what they saw when your daughter was there. Then, you can take that to the Developmental Pediatrician when you go. Also, try to capture a 48 hr or more if you can period on camcorder or on those Nanny Cams. This way they can see how she is before an episode,during and after. And the foods, its good that you have expereinced what she can and can't have. I have heard taking these out of the childs diet helps as it did for you and your husband. Good luck
  10. InsaneCdn

    InsaneCdn Well-Known Member

    Just two tiny bits...

    1) Start a parent report plus daily logs of everything you can. We didn't. We need it now... (ours is 14). If you can, get school to document as well (logs, etc.). Paper counts.

    2) Be prepared that your child may be "atypical" for any particular label. The interesting thing with all the various disorders and issues that come with "developmental" and/or "behavioral" labels is that there really isn't a "typical" case, but professionals like to think there is! So... it may take more than one "label" to actually describe the problem. Keep fighting, and if the first diagnosis doen't fit or doesn't seem to explain some of the challenges... push farther.

    Good luck!