At my breaking point...new here

Discussion in 'General Parenting' started by SmartGrl001, Oct 8, 2008.

  1. SmartGrl001

    SmartGrl001 Christy

    Hi. I am new here. My name is Christy, and I have a 3 year old and a 7 month old. My 3 year old has me exasperated. Most days I just want to break down and cry, or find a way to give her back to the hospital. She hasn't been diagnosed with anything yet, but I believe she has ADHD. She is angry, defiant, aggressive, hyper, can't sit still, won't complete any task, easily distracted, won't stop talking all day long, has to have the focus on her 24/7....the list could go on and on. This is not just at home either. It is at preschool, friends' houses, Sunday school....everywhere. I just am not sure how nature could create such a beast....that a child could be born and by age 3 be completely disliked by their parents because of their personality. Don't get me wrong, I love her to death, but almost every day lately I don't like her. I can't wait until bedtime, which is even a struggle as she doesn't sleep well through the night....and with a 7 month old...some nights I'm just practically up all night. I have an appointment with her pediatrician on November 4th....I just wish it was sooner. I know we're going to get referred somewhere, and then it will be another wait to get in there.

    I know this is rambling, and I'm sorry for that. I just don't know what to do with her any more. She acts possessed some days...well most days lately. I don't enjoy being around her...and I resent the fact that she takes up so much attention that the 7 month old is left to her own imagination most of the day. Thankfully the 7 month old is a very happy baby....and so much different than my 3 year old already.
     
  2. nvts

    nvts Active Member

    I'm on limited time (the demons are home from school and difficult child 1 is being a total creep = will post later - unless I'm in jail!) so sorry for being brief.

    There are a ton of things that could be going on. What was her early development like? Did she obsess on a certain toy or types of toys? Line them up? How was her speech? Did she have a high sensitivity to itchy tags, certain cloths, loud sounds, certain smells, etc?

    Could there be a food allergy involved?

    Are there mental illnesses on either side of the family? Alcohol or substance abuse?

    Sorry for sounding invasive, but a lot of the answers could shed a lot of insight! ;)

    Try taking a look at the book "The Explosive Child" by Ross Greene, it's a quick read and not a lot of techno terminology, but it really gives a lot of insight as to how she might be wired.

    Welcome to the crowd!

    Beth
     
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    How was her early development--speech, socializing with peers, motor skills, tranistions, eye contact with strangers, any odd quirks?
    Any psychiatric problems or substance abuse on either side of the family tree?
    He could have one of a ton of issues. I'd take him to a neuropsychologist.
     
  4. karif

    karif crazymomof4

    Depending on insurance you should see if they your peditrician will at least refer you to a neurologist. Do some research on line in your area before you go. Call your insurance company to see if you need a refferal or if you can self refer. Also check to see who would be the best doctor covered by your insurance. We have to be warriot moms when it comes to our kids. Hang in there it will be a long battle. We are still trieing to get accurate diagnosis and find the right help for our little difficult child. Don't beat yourself up all moms dislike there kids from time to time.:D
     
  5. SmartGrl001

    SmartGrl001 Christy

    Let's see....early development. She's had a rough go already even up to this point. I was in labor for over 24 hours with her, many times her heart rate dropping to 30, and finally had an emergency c-section. About 3 days after birth she started screaming...all day all night...never stopped. She was diagnosed with severe silent reflux (not so silent with the screaming) and she also had colic. At 3 months old she stopped eating. She ended up with an NG feeding tube. They hoped that the tube would stimulate appetite and she would start eating. She didn't. She ended up with a peg tube in her belly for about a year. It was an accident that she ended up with no tube, but has been growing still.

    She wasn't very cuddly as an infant, but she was always in pain and/or hungry, so that is a big reason. She always made eye contact. she never had a problem with noises...never did anything abnormal such as putting toys in order or staring at things. Everything was pretty much on track both verbally and with her motor skills.

    She does have textural issues with food, and has had them since I can remember her starting solid foods. She had a really bad gag reflex...fed her applesauce at a restaurant when she was a year and a half and she threw up all over the table. Now she has grown into also gagging if food looks "ucky" in her mind, but only if I am trying to convince her to eat things, so I don't try to convince her to eat anything she doesn't want to. She still doesn't have what I consider an abnormal sensitivity to noise, she runs from the noise of a siren if she is outside when she hears it. She IS very very loud herself, but has no hearing problems. Always loud. She has been known to throw up (only happened once) when smelling something she didn't like (her baby sister's dirty diaper). Every time she has a cold she throws up from coughing too much.

    Lately she has taken to going outside when she has to poop, taking her diaper off, and pooping in the back yard with the dogs. I chalk it up to the dogs being out there, but maybe that is a sign of something. I cannot get her potty trained, although today she did poop on the toilet, the first time. The second time was outside with diaper off. So much fun when she comes back to the back door and has a butt full of poop.

    Also lately with some clothes, she doesn't like the tags and wants them cut out.

    As far as not doing anything with toys such as stacking them or lining them up...no. She doesn't play with toys much at all, or watch tv much at all, or do anything much at all but run around, yelling and talking very loudly, and getting into anything and everything she knows she's not supposed to....even when she's outside.

    She interacts well with other children, although her temper sometimes gets the better of her. She has not hit purposefully or done anything extremely out of character for a 3 year old towards other children.

    she doesn't sleep well. her mind doesn't shut off enough for her to sleep well. She will "wake up" and in a half awake state talk about something that happened during the day, or something exciting I have told her is going to happen the next day. Occasionally she does have some bad dreams. some nights she wakes up around 1 AM and won't go back to sleep until 3 or 4 AM. Regardless of how early or late she goes to bed, or how much she was up in the middle of the night, she gets up between 7 or 8. Much better than her preferred time in infancy of 4 or 5 AM.

    If she doesn't get her way, or is told no, or something is taken away from her, even if she knows she shouldn't have it, she screams in a really high pitched tone. If she is put in time out she screams in a really high pitched tone. If she knows you are coming to get something away from her she will throw it, at anything and everything. And when she is really really angry, she will just get really ****** and start kicking or hitting the dogs, throwing things, screaming. All out temper tantrum. I know some of that is normal, but I did exactly what everyone told me when she was younger....ignore the temper tantrum since she was looking for attention. Did that for over a year, and she learned nothing from it.

    Also, just remembered, she sometimes doesn't seem to feel pain as much as she should and doesn't understand the concept of causing pain to others (dogs and cats mostly). When she was an infant she wouldn't let us know she had a dirty diaper, and ended up with numerous yeast infections, open bleeding sores...and didn't cry about it.

    Her diet and nutrition is a sore spot. the fact that she has no feeding tube anymore is merely an accident. She was getting fitted for a new tube, they put a temporary one in, and the balloon was defective and burst. It fell out and the hole closed. We had two options....feed her whatever she would eat, or go through surgery again and start all over with the feeding tube. We opted to try to get her to eat. She is still growing. She is on the chart, but at the very bottom of it. The problem is what she eats. The GI doctor even told me, go to the store and anything and everything you would NOT buy if you were on a diet...that's what to get her. Make her gain weight or she would end up back on a feeding tube. so...her diet consists of ****. She won't eat meat. She won't eat vegetables. She won't eat too much fruit. She will eat sugars, carbs, eggs, breads, cheeses, condiments, dips, yogurt, sometimes cottage cheese. That's about it.

    I have read a lot about ADHD and a lot of sites point to changing diet. Elminate the sugar, dyes, processed foods, and sometimes gluten. The sugar is a fairly easy task for me to try. Almost everything is made in a sugar free formula. There are many cookbooks on the market for sugar free cooking. Getting rid of dyes may not be as easy, and eliminating processed foods would be almost impossible. We'd be down to very little that she would eat.

    I do have an appointment with her pediatrician on November 4th, and got the phone number to a behavioral department in our county. I also ordered two books (which haven't gotten here yet) and natural supplements or remedies for her. We started fish oil on Tuesday night, and the other herbal supplement called "Focus" (I think) last night. There is one more that I am starting tomorrow recommended to go along with the Focus called "BrightSpark". Obviously it's too early to tell if it's doing any good.

    As far as mental illnesses or substance abuses....there is no substance abuse to speak of as far as me or her father. My dad is an alcoholic, but stopped drinking 30 years ago. My grandmother was bipolar, but was left untreated as her brother was into keeping up appearances. She died of alzheimers. I ended up going through rehab at the age of 16 for drugs and alcohol, but have not used or drank to excess for 16 years now except for the occasional drunk night out with girlfriends (probably 10 times in the last 16 years). I do smoke. I have smoked since I was 13. I have been on antidepressants, both as a teenager, and for PPD after she was born. Many days I think I should go back on antidepressants now. Her father's family history...both his parents are alcoholics, but do not drink anymore. He has two sons, one is 20 and one is 18. I have been with him for 6 years. The 20 year old was on Ritalin as a young child, and probalby needed to be on something for the 4 years he was around me. He had temper issues (punched holes in walls, tore things apart, threatened to hurt himself and others). he was a mix of hyperactive sometimes and totally tired and drained others. His 18 year old brother doesn't exhibit those behaviors. he seems normal. Just lazy. My daughter's father was also on some sort of ADHD medication as a child. Even to this day he can't sit still very much without falling asleep. I'm not sure if that is a sign of anything either. If he sits still, he will be asleep in 2 minutes flat. One of my father's daughter's sisters is a drug addict. What else is going on with her I don't know. She is an RN and using some pretty heavy drugs. His other sister supposedly has a psychiatric degree. and his third sister has jealousy issues about everything...never happy for somebody else's good fortune. They were all abused as children...the 3 girls sexually and physically, my daughter's father physically, from their father, and my daughter's father was in turn sexually abused by his sister, the one with the psychiatric degree who is now a lesbian.

    Okay....sorry...that was a long post and lots of info, but both Beth and "MidwestMom" asked some in depth questions. That's all I can really tell you.

    Today was a good day mostly, except for the pooping in the back yard incident and dumping a whole bag of chips on the table. She wasn't quite as loud and obnoxious today.

    That's another thing. Right at this moment we live with my parents, so in the house is my mom and dad, me, my daughter's father, his 18 year old son, my 3 year old, and my 7 month old, along with various pets. The more people that are home at a single time, the worse she behaves, and she acts the worst when her father is home....being loud and all. He is louder than most too, but definitely not as loud as her.

    Thanks for any insight any of you can give me into this. I'm willing to try whatever I can to try to get her closer to the world's "normal" before Kindergarten starts. She is a bright child, but cannot focus. I can't sit and read to her...she won't sit still and just starts flipping the pages so you can't read. I can't sit and teach her numbers, colors, letters, anything because she won't sit still, and if she happens to sit still, she is pinging from one topic to another and won't stay focused. We can't sit and color, do crafts, anything. I can't have her help me with most things because she is always rough (stirring things so they splash everywhere, throwing the food items into the grocery cart, throwing the dog food into the bowl instead of putting it in there nicely). I want to be able to sit with her, cuddle with her, read to her, teach her, and it's killing me that I can't, and that she's going to be behind, and possibly so disruptive, that she won't thrive in school. Like I said...she's bright.

    Tomorrow is my normal grocery shopping day, and due to financial reasons I couldn't go out earlier than that this week, but starting tomorrow she will be at least 95% off of sugar if not more.

    If it comes down to it, she will eventually end up on some ADHD medication, and probably back to a feeding tube as her appetite still isn't great at this time, and I have read that most of the medicines out there suppress the appetite even further.
     
  6. SRL

    SRL Active Member

    Hi and welcome to our forum. I'm glad that you found us.

    I didn't have a mover like you do, but so many things that you described took me back to baby/toddler/preschool days. I bet you're exhausted.

    After reading through your descriptions I am going to suggest that you push your pediatrician to refer you for a multidisciplinary evaluation, and because of her age and medical issues, at minimum with a developmental and behavioral pediatrician and an occupational therapist. These specialists can usually be found at Children's Hospitals and at some university hospitals. (In Illinois I believe there are developmental pediatricians on staff in the Springfield, St. Louis, and Chicago areas. Often pediatricians will be reluctant to refer to these right off, instead preferring behavioral therapists and psychiatrists, but be insistent that you want diagnosis first in order to determine a correct treatment/intervention path.

    With her sleep patterns and the dad's sleep history (by the way, check out the term narcolepsy) I'm thinking that a sleep study might also be good.

    We're not diagnosticians but the food and clothing issues (and possibly the constant motion) that you are describing sound an awful lot like something called Sensory Integration/Processing Dysfunction. Kids with Sensory Integration Disorder (SID) process sensory stimuli very differently than most of us. Tags on clothes or sounds might be legitimately painful to them. Foods or food odors that seem normal to us might elicit that immediate heaving feeling we might have had at our worst nightmare when we were pregnant. Take a look at the article here and if it rings a bell, pick up a copy of a book called The Out of Sync Child by Carol Kranowitz. Sensory Integration Disorder (SID) rarely rides alone, usually it's in conjunction with other neurological issues.
    http://www.tsbvi.edu/seehear/fall97/sensory.htm

    Until you get a handle on what's going on, I would lay low in terms of expectations. Get food into her, but don't be insistent that she eats certain foods or at certain times. It can actually make the situation much worse if it turns out to be Sensory Integration Disorder (SID).

    Hang in there--hopefully we can get you pointed in the direction of getting her some help.
     
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I would forget about ADHD. It could be many things and I'd keep an open mind. At her age, you can, at best, get a working diagnosis (which will likely change with time) but it can lead to interventions in the community and school (they are useful). I would take her to a neuropsychologist or for a Multidisciplinary Evaluation. No one here can diagnose, but it sounds like more than ADHD to me--you have mood disorders in the family. Substance abuse, even if resolved, are also red flags for mood disorders. She also has SOME red flags for some sort of autistic spectrum disorder. It can be a lot of stuff, and a pediatrician won't be able to diagnose it. It's out of his field. I like NeuroPsychs because they test very intensively and often nail problems others miss. Good luck.
     
  8. smallworld

    smallworld Moderator

    Hi Christy, welcome. I'm glad you found us.

    My younger daughter M experienced a very serious eating disorder characterized by the development of a choking phobia at age 8. She, too, stopped eating completely and lost so much weight that she ended up in the hospital and fed via NG tube. After hospitalization she attended a day treatment program for feeding therapy. She also was started on medications to reduce her anxiety, which helped immeasurably. Today she is a very healthy -- emotionally and physically -- 10-year-old girl.

    Along our journey in search for answers, we came across a nationally known specialist in pediatric feeding disorders who practices at Children's Hospital in Washington, Difficult Child.

    Dr. Chatoor told us that almost all children who experience feeding disorders at a young age have a neurobiological anxiety disorder fueling their eating difficulties. In addition, many suffer from co-morbid sensory sensitivities (as SRL discussed above). Just so you know, anxiety in young children can look different from how it appears in adults. It can include defiance, inattention and non-stop activity. Because of the overlap of many childhood disorders, it is wise not to settle on an ADHD diagnosis just because it looks like ADHD.

    That's also not to say that you shouldn't rule out all physical causes for your child's eating difficulties before you assume it's psychological. Has your GI doctor assessed your daughter for swallowing problems, motility issues and gastroparesis? Has your GI doctor done an upper endoscopy on your daugther recently to determine if there is inflammation from ongoing reflux or other causes? The physical issues must be ruled in or out and treated if necessary before moving on to psychological and developmental issues.

    I agree with SRL about the need for a multidisciplinary evaluation at a children's or university hospital, but I think it's imperative that someone on the team have expertise in feeding issues in young children. Getting the eating issues under control in my daughter was the key to resolving a whole lot of other issues as well.

    Hang in there. Please feel free to post further questions or concerns. We're here for you.
     
  9. SmartGrl001

    SmartGrl001 Christy

    No, I didn't think the pediatrician herself would be able to diagnose, but that's where I figured I'd start. She's actually a resident at the Lutheran General's Children's Hospital. She is open minded, but is also very young. I more want a referral from her, and I don't think she'd have a problem with that. They themselves actually have what they call a "healthy steps" program where they observe and discuss with you your child's development and behavior. I'm not sure I want to get into that as much as just get a referral.

    I also have a number to a Children and Adolescents Behavioral department. I haven't called yet, but they may be able to get me in earlier. It's through the county.

    As far as insurance goes, we are on the AllKids program....state aid insurance basically. That is good and bad. There's a limited choice of doctors, but I don't think the pediatrician. will have a problem referring us, and everything is free.

    She has always been a handful, but it's really coming out more and more lately....especially in the last month. It's like a switch is flipped and she is a handful more often than not now. She used to at least have stretches...good stretches and then bad stretches. This bad stretch is lasting quite a long time...and it's amplified and getting worse...and I'm just wondering if there's ever going to be a good stretch again.
     
  10. SmartGrl001

    SmartGrl001 Christy

    Oh by the way, I never force her to eat if she doesn't want to. Especially if things seem ucky to her, because quite frankly, I know it doesn't work with her, and I don't want to be cleaning up vomit at dinner time. :tongue: Anyhow, as stated before I have an appointment with her pediatrician on november 4th, but I also decided to call around here and I found a psychiatrist (or psychologist...can't remember) that is going to also see her...probalby next week. I know this is just a start, and we may need many more evaluations, but my quest at this point is to be comfortable with a diagnosis and direction as to how to deal with her before she starts kindergarten in 2 years. Then I can talk to the school and get an IEP set up for her, and at least the teachers won't think she is simply a spoiled brat who was never disciplined. I already know that most of the things I have tried with discipline do not work, and apparently trying to just communicate with her doesn't always seem to work. She understands what I am saying, but doesn't follow through with actions or words. But hopefully we'll start getting somewhere.

    Crazy...she is my first. I had all these thoughts about what childbirth would be with with her. I wanted to go all natural with no pain relievers. I ended up on a mild pain reliever after about 16 hours of labor, and ended up in c-section with her. I had dreams of what it would be like to be at home with her, cuddling, cooing.....playing with her. All she did was scream. Then she stopped eating. She ended up on the feeding tube. I imagined the day she would be off the feeding tube...grown out of the reflux...and be a happy girl, playing and learning. Now that I am paying more attention, I don't think she's very happy either. I just want for her to be happy....that's all I've ever wanted. ***** that she's 3 and hasn't really truly known happiness yet....and makes me very sad at the same time.
     
  11. tiredmommy

    tiredmommy Site Moderator

    Your last post brought up a lot of painful memories for me. My Duckie too was very unhappy. I have very few newborn pictures of her because she didn't smile until 7.5 months. She used to nurse for 8 minutes, sleep sitting up for 20 minutes, then wake of screaming. She'd keep it up until she was ready to nurse for 8 minutes again at the top of the hour. It was a nightmare to not be able to comfort her.

    Was your difficult child on medication for the reflux? We were told the her Zantac may have ultimately led to Duckie's food allergies. Also, you may want to look into attachment issues due to her early health crisis.
     
  12. SmartGrl001

    SmartGrl001 Christy

    She was on prevacid for the reflux. She did spit up quite a bit, but not really projectile like my cousin's kids did, but she sure did cry a lot. The severe crying stopped when she got a little more mobile. Of course because of the feeding issues and all she never had the real growth spurts. I can see what a "normal" child acts like with my second. She has been a very happy, content, smiley baby. I never knew.

    I'm not sure what you mean by attachment issues. She is a very independent girl in all aspects except for sleeping. Never had separation anxiety or stranger anxiety. I have thought of a few more things as I've been thinking about her though. As a baby, she needed a lot of stimulation to go to sleep....she needed to be rocked hard and patted on the bottom fairly hard (harder than I knew even then for being normal), and she always slept best in a swing. And I can't remember off hand now, looking up the Aspergers, Sensory Integration Disorder (SID), and ADHD, which one it was that said that children with it like to spin, swing, and they like water. Yeah...she likes to spin to the extent that we bought her a sit 'n spin about 6 months ago....the thing she likes best at the park is to swing....and she loves water, to swim in, wash her hands in, play in, transfer from one cup to another...anything you can do with water, she loves.

    Also in reading, I don't think she has Aspergers. It just doesn't fit real well with her. As I recall from my readings last night, she may have one or two symptoms of it, but they were symptoms that overlap with Sensory Integration Disorder (SID) and ADHD. Although she spent a lot of her time crying as an infant, she did make eye contact all the time. She was always very very alert. She held her head up off of my shoulder at 2 days old...actually she did it at about 4 hours old for a second or two as well. I also have realized from the reading that I really truly think she has Sensory Integration Disorder (SID) big time, and a touch of ADHD, although the situation we are living in may be aggrivating the Sensory Integration Disorder (SID) so bad that it just looks like ADHD. She covers her ears sometimes when the baby cries...the more people that are around causing "commotion", the worse she is...she hates the feel of grass, that used to be worse, but she hates shoes on her feet even more than the feel of grass. lately she would rather be in only a diaper while in the house, although she's been known to strip down naked in the back yard before. She herself likes to create lots and lots of noise, but the noisier the situation is that she's in, the more frantic she seems to get. If her father and I argue, she starts yelling at us. She also doesn't like to be dirty...if her hands are sticky or dirty, she needs them cleaned immediately. She hates having her hair brushed, and lately washed, and she will not keep a hair tie or barrett in for more than 5 minutes.

    Although probably symptomatic, I found it comical tonight. We were at a relative's house all day, and left when it was time for the kids to go to sleep. The 3 year old fell asleep right away...as did the baby...but the baby woke up and started crying. After about 5 minutes of the baby crying, the 3 year old woke up enough to say "be quiet baby kenzie" about 3 times, real stearn like, and then fell back asleep. For some reason that did quiet the baby down, but it was funny.

    Now I have a question since I'm new to this type of board....what does "difficult child" stand for? I know it is referring to the children with behavioral issues, I just can't figure out what it is an abbreviation for.
     
  13. tiredmommy

    tiredmommy Site Moderator

    difficult child = Gift from God; the child that brought you here. :winks:

    She does sound like there's some Sensory Integration Disorder (SID) going on. You may want to check out The Out of Sync Child by Carol Krankowitz (spelling?). What's important to note is that sensory problems can stand alone or be co-morbid with other conditions. The big three seem to be ADD/ADHD, autism spectrum disorders such as Aspergers, or mood disorders such as depression or early onset bipolar disorder. Anxiety is also quite prevalent.

    Sleep problems can also manifest like ADHD. My Duckie slept the requisite hours each night, but her sleep quality was poor. She would become more and more revved up until she would crash with exhaustion. Then the cycle would begin again. There's a book called Healthy Sleep Habits, Happy Children that I found very helpful.

    Attachment problems have a spectrum of severeness like most behavior disorders. Be careful if you look online about it because many sources cite only parental abuse or neglect as the cause. It can also be caused by children suffering from significant illness in infancy. Here's some symptoms (from http://helpguide.org):

    Emotional Problems
    low self-esteem; needy, clingy or pseudo-independent behavior; inability to deal with stress and adversity; depression; apathy
    Physical problems
    susceptibility to chronic illness; obsession with food - hordes, gorges, refuses to eat, eats strange things, hides food
    Social Problems
    lack of self-control; inability to develop and maintain friendships; alienation from parents, caregivers, and other authority figures; aggression and violence; difficulty with genuine trust, intimacy, and affection; lack of empathy, compassion and remorse; negative, hopeless, pessimistic view of self, family and society
    Learning problems
    behavioral problems at school; speech and language problems; incessant chatter and questions; difficulty learning


    FWIW, it's most likely not an attachment issue, but rather Sensory Integration Disorder (SID) and something else. Our family was concerned about it because she came from a loving & stable family but still showed symptoms across the board. Her behavior improved drastically, however, when she was aggressively treated for her allergies after a health crisis. The ODD was still there but she was able to begin learning different better behaviors.
     
  14. SRL

    SRL Active Member

    Sensory Integration Disorder (SID) can be improved and kids can learn coping skills but it takes a coordinated effort between a private occupational therapist, home, and if applicable school. Call your pediatrician right away and get scheduled for an evaluation while you are researching, etc. Start keeping a journal of your observations--some of what you will see are overreactions (negative) but you may also see positive (self-seeking calming) and you can tap into those. ie Swinging/spinning was very calming at my house so we put in a therapy swing in the basement and would direct to there during transition times such as before or after school to help bring about regulation again.
     
  15. smallworld

    smallworld Moderator

    Just so you save yourself some time and effort, make sure you go to an occupational therapist who has experience with feeding issues. As I mentioned above, feeding difficulties in young children are often connected to Sensory Integration Disorder (SID) as well as anxiety.
     
  16. Marguerite

    Marguerite Active Member

    Don't rule out Asperger's. I know people put a lot of emphasis on eye contact not being made, but it's more complex than this. Both my boys have a diagnosis of Pervasive Developmental Disorder (PDD) - difficult child 1 is Asperger's and difficult child 3 is high-functioning autistic. Their sister in the middle probably is also Aspie, but the pediatrician says no, because she makes good eye contact. But he said this about someone who is now an adult and who can discuss this for herself - she says about herself that she DOES make good eye contact with the pediatrician because she knows him, has done for many years now (since she was 10). She has noted about herself that she doesn't make good eye contact with people she doesn't know.

    All three of them have ADHD diagnosed as well.

    The boys - they both made good eye contact, with us. Once they got to know people, they would make good eye contact with them also.

    When difficult child 3 was being assessed (multidisciplinary clinic, second opinion, he was just 4) they had asked us to bring baby photos (to assess eye contact). In those photos you can see difficult child 3 making good eye contact. Not always with the photographer, but for example a baby photo of difficult child 3 with his older sister, you can see him looking right into her face. And this was typical.

    The Sensory Integration Disorder (SID) stuff - for us, this is part of the Pervasive Developmental Disorder (PDD). A lot of other things you describe would also fit with Pervasive Developmental Disorder (PDD). The water, the spinning - Pervasive Developmental Disorder (PDD).

    Of course, there could be other explanations. That's why you need someone with their head screwed on to thoroughly assess her. But what you describe - oh yes, very familiar.

    I've been told that the diagnostic criteria of Asperger's in girls are currently being reassessed. I'm trying to find out more.

    Something for you to play with - if you go to www.childbrain.com they have an unofficial Pervasive Developmental Disorder (PDD) questionnaire. You can do the questionnaire on your daughter (there is some very good explanation on how to answer each question, if you need it, without biassing it unfairly) and then whatever the result, print it out and take it with you to a doctor's appointment. From experience of other members, keep your own copy so if the doctor wants to keep what you take in, you still have your own copy.

    Even if the result says, "no Pervasive Developmental Disorder (PDD)" it's a worthwhile exercise because it can show the sort of problems that ARE concerning you and can thereby trigger some useful discussion.

    She's had a lot to deal with so far in her life, it's also quite likely that a lot of the problems have coloured what is going on here. But the sort of problems which have led to the feeding issues, the gastric issues etc could also have led to other as yet undiagnosed problems which could fit with Pervasive Developmental Disorder (PDD) (for example). Or other things.

    I'm glad you found us. Have a look at "The Explosive Child" and especially the sticky on this forum on adapting this book to young children. It can't hurt, and it just might make your life a bit easier, while you're waiting for some answers.

    Marg
     
  17. SmartGrl001

    SmartGrl001 Christy

    I did the questionnaire at that childbrain website. She still doesn't fit the bill. The more and more I read on all of these I am still pretty convinced that it is Sensory Integration Disorder (SID) and ADD/ADHD. I am not ruling anything completely out though. Obviously I am no expert. If a professional tells me she as Aspergers or Pervasive Developmental Disorder (PDD) I won't get upset and disagree with them. I do, for some reason, have a fear of any kind of autistic diagnosis, but I will not let that fear overpower my will to find what works for my daughter so she can be a successful and productive adult. I'm willing to put the work in...I'm willing to listen to professionals and to try whatever they ask me to try, within reason as to safety (obviously I'm not naive enough to do something harmful to my child), because what I am doing is not working. Traditional parenting does not work with her, because I don't understand her.

    I have noticed though, now that I have been reading more and more about the Sensory Integration Disorder (SID), I have changed things. Not even necessarily intentionally per se, but because now I know that the things she finds annoying she may actually be perceiving as hurting her, such as wind in her face, getting her hair washed and brushed, clothes being annoying. Until I have been "taught" how I can help her get through some of these things, I am just trying a gentler approach because now I'm not seeing her as just being a brat, I'm seeing her as a tortured soul. She has been quite a bit calmer the past couple days because I have changed my views towards her through research.

    I also agree, after reading a bunch, that she needs an occupational therapist, but when you're on state insurance, finding one is the issue. That's why I made the appointment with the child psychologist first, because they can probably point me to an occupational therapist that will take the insurance. I also do have an appointment with her pediatrician, but I couldn't get in there until November 4th. The child psychologist is next week. And I already figured with the issues she has that I will definitely be having several meetings with whatever school she is in. She is in a 2 day a week preschool now. I have talked to the teacher a couple times. The last day she had preschool was last Tuesday, before I found this board. I told the teacher I was thinking she had ADHD, and I still believe she probably has at least a touch of it, but all the things I'm reading are telling me HEY, YOUR KID HAS Sensory Integration Disorder (SID)....she fits so much of that criteria it's not even funny.

    In the meantime, the living situation has to change too. We are actively looking (and I mean actively) for a new house to move in to. We live with my parents right now, so there are 5 adults, and 2 children. We've lived here a little over a year. I have tried so hard to implement my way of parenting as I wasn't crazy about the way my parents raised me, but every time I mention anything my mom gets really hacked off that I would even suggest she's doing anything wrong. I believe the living situation has just amplified the situation to a really severe level. My 3 year old is a completely different child when she's home with just me, or just me and her father. When everybody is here, she goes nuts, and I really believe it's because there's so much noise and commotion when everybody's here, it's driving her nutso.

    Anyway, I am open to going to whatever therapy I find helps my daughter. Because of her feeding issues as a child, we had a home nurse visiting 3 times a week for weight checks, we had to see the pediatrician every week for "official" weight checks, we had to see the GI doctor once a month for an "official GI" weight check, we had to go to the health department once a month for checks and such, and then of course all the regular doctors visits. I am a pro at the too many appointments in a lifetime thing, so it's no big deal...lol.

    Out of curiosity, when they go to occupational therapy, is that more work on them, or work on the child and the parents to figure out parenting? I'm only asking because I'm trying to figure out if both her father and I need to go, or if I can just take her.
     
  18. SRL

    SRL Active Member

    Very good. Recognizing that "they can't" instead of "they won't" is the first step in helping them.

    Occupational Therapist (OT) is most effective when all aspects are included: parents learning the ropes through research, observation, trial and error, and attending the therapy sessions to learn from/work with the therapist in order to carry out the therapy in the real world. However, I do think two parents at all the therapy sessions would be overkill and overwhelming to have three adults focused on one child.

    Sensory Integration Disorder (SID) can really throw a young child for a loop and impact behavior from sun up to sun down. But it rarely rides alone. It's possible nothing else is going to jump out at you at her young age, but keep that in mind as you're researching and having appointments.
     
  19. Marguerite

    Marguerite Active Member

    With occupational therapy, the first sessions are most likely going to be - what is she like? What are the problems? They may get straight into the sensory issues with some techniques for helping reduce her sensitivity. If you and your husband are good at communicating with each other, if you think either of you could give the full picture to the therapist and could in turn pass all the information back from the therapist, then by all means just go separately. husband & I have had to do this a lot - mostly I've taken difficult child 3 to appointments (or the other kids) but sometimes, if he can get time off work, he will come along too. There was a time when I was in hospital and there were lots of appointments organised, and husband had to take them; he arranged (where possible) for me to be present via speakerphone.

    Your daughter's problems are likely to be complex. The Sensory Integration Disorder (SID) stuff could be stand-alone, connected to her rough start and need for gastric feeding. Or it could be connected to something like Pervasive Developmental Disorder (PDD). So hopefully an Occupational Therapist (OT) will take time and not treat her like just another Sensory Integration Disorder (SID) case.

    As for a Pervasive Developmental Disorder (PDD) diagnosis being scary - I sympathise. I felt like that when I was younger especially when I read articles on autism. I always wanted kids and grew up with a mother who was chronically ill. I was always having to step in to get meals, to do other tasks. I also helped with various babies my sisters had, when they came home to stay for a while and learned to cope with the new baby. School holidays - I was babysitting. One of my sisters adopted some special needs kids, I was there helping. I could cope, I felt sure, when my time came. A kid with hearing impairment, vision problems, even learning problems - it would be difficult but I could handle it. As onlg as I didn't have a child with autism. I knew I'd never cope with that. There was something in the description of a kid who was emotionally cold, distant and uncommunicative that absolutely terrified me.

    Then I got three. Justice? I don't know. What I have learned, though - what I read about autism when I was younger was very, very misguided and very, very pessimistic. All the scary stories have turned out to be untrue, misguided, just plain wrong. Autistic kids can't love? Bunkum. They feel, they love, they are very loving indeed. They can express emotions, they feel deeply. Almost more deeply. But they don't always express emotions in ways we recognise.

    Autistic kids can't learn - again, rubbish. They can learn with lightning speed when they are ready to learn a new skill. But yes, they can sometimes struggle with something for a lot longer than you would think. Then one day the penny drops, often because someone has presented the information in a different way that just clicks with them. Life with an autistic child can seem monotonous with no progress - until all progress happens in one day. Then another period with little progress - then another leap of milestones. It can be very exciting. And once you learn what triggers the milestone leaps - it's make sure you have a tight grip on the reins, and hold on for a wild ride. If your daughter has any area of special interest, indulge her.

    You're already learning how giving way on sensory issues can make everyone's life more pleasant. Even my easy child has some sensory issues, perhaps it's as much of the Pervasive Developmental Disorder (PDD) as she has, being a sibling of Pervasive Developmental Disorder (PDD) kids. But I have always had to 'vet' all knitwear coming into the house, for example. husband has been a campaigner for the use of good Aussie wool in clothing, nothing else is good enough for HIS kids. Only his kids refused to wear pure wool, because we just couldn't get any that wasn't too scratchy for them. Now, it IS possible to get wool that isn't scratchy. But to our kids - ALL of it was scratchy. We have had to compromise with acrylic.

    I grew up with only the cheaper Aussie wool products and I could sympathise with my kids - I hated the scratchy feel of wool, too, I learned to put up with it. We have more choice these days. husband has finally had to accept that some synthetics are a good second choice, because at least the kids will wear them!

    Shirt labels - cutting them out wasn't good enough. It can often leave a scratchy raw edge, so I learned to unpick the label entirely, then re-sew the seam. It can be fiddly trying to find the source of discomfort, but it's worth the trouble. You get more compliance form achild who is comfortable.

    Sometimes you have to go back to what you would do for a baby - if you want to show your new darling off to doting relatives, you make sure the baby is comfortable, fed and rested. That way she will be more likely to behave and not scream over-much. It's much the same with a Sensory Integration Disorder (SID) child - keep them comfortable, they will be more malleable.

    The same logic has me keeping food available to my kids, especially after school. I would expect the kids to come home tired, hungry and cranky. Feeding them as soon as they walked in the door went a long way to putting a smile back on the cranky face. I often, when they first started school, had to give them their evening meal right after school. If they were still up later on and hungry, they would get their afternoon tea snack then. But if they were too tired to eat their dinner later on, it didn't matter if I'd already fed it to them.

    Your daughter is your daughter. She has problems, you can see that. If you can help her at least with the Sensory Integration Disorder (SID), you will be making life a little more comfortable for her and also showing her that your aim is to help her. You hopefully should see some improvement in her behaviour.

    Whatever is wrong with her, is already wrong. Thinking about possibilities won't make them materialise out of nothing. I know you know this, but sometimes we forget; our fears drive us to stay away from some areas because we just don't want to go there.

    I've learned some wonderful things about Pervasive Developmental Disorder (PDD). This isn't just me making the best of a bad lot - I have been finding out for myself that whatever Pervasive Developmental Disorder (PDD) is, it's nothing like the "autism" that was described, when I was younger. It's almost diametrically opposed. Of all the things that could have been wrong with my kids, I now feel I've been handed the package I could best cope with. I've also realised how wrong a lot of the information has been. In the time I've had to deal with this diagnosis (a bit over 10 years) I've learned a lot. I've also had to re-learn a lot and I'm seeing my own independent learning now being independently recognised as researchers constantly rewrite the guidelines. Just in the last two years, our education department has done a complete reversal in how they manage students with autism. Not just a change in how they manage - but a complete 180 degree turnaround.

    Your daughter may be just Sensory Integration Disorder (SID) plus ADHD. However, she will still be similar enough to my difficult child 3, that something we do may help you - watch her. See how she functions, the sort of things that comfort her and seem to calm her. Then try and help her continue to have access to this. Because one thing these kids are already good at even when very young - they have learnt at least partly, how they learn best, how they feel best. A lot of this may change later, but for now, if it works - do it. Go with the flow. Relax, follow her lead at least as far as your parenting allows you.

    Some things we've allowed our boys - difficult child 3 loved to cuddle a towel, especially when he was tired or sad. So I made him some shorts out of an old towel. I covered a pillow in towelling. I keep an old towel in the car so when he was tired, he could cuddle the towel to go to sleep in the car.
    Something else - we got a new washing machine, it came in a giant cardboard box. We left tat cardboard box in our living room and let the boys sit inside it to do their homework. difficult child 1 cut a small window in the box and filled the box with cushions. The boys would sit inside the box and watch TV through the hole. They liked the feeling of being enclosed, but I could still use it to get their work done.

    A hammock - the boys liked to be completely wrapped up in the hammock, but because it was net, they could easily breathe. Again, feeling enclosed. The swinging also helped a lot. There are other good exercises for them - throwing them a ball (and having them throw it back) while swinging. Since then, the Nintendo Wii has come out and seems to mimic a lot of these really good exercises that were once so popular with occupational therapists before a certain entrepreneur began marketing this as his own method (long story, I ranted about it a year ago or more). The Wii Fit will do a lot of these exercises - again, talk to the Occupational Therapist (OT) about it or try one at a friend's house.

    You may find some very different things that work for your daughter. It's just a matter of being open to it and watching what she does with her environment.

    Anyway, I hope you are seeing some improvements already. Have courage, you are back on track to finding your daughter and getting her the help she needs.

    Keep us posted on how you get on with the Occupational Therapist (OT). I think that is a really good next step.

    Marg
     
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