Newbie with a difficult child

Discussion in 'General Parenting' started by Ohio, Jul 14, 2007.

  1. Ohio

    Ohio New Member

    Hi Everybody!

    I have been lurking in the forums, but haven't had the courage to post up until now. I am a married stay at home mom with a 5 year old son. He is a brilliant little boy, but he struggles with many issues. He has been to a therapist who diagnosed him with ODD, and his pediatrician recently referred him to an Occupational Therapist for an evaluation. I hope that we can find an accurate diagnosis for him before school starts, because I am starting to wonder if he will need to be placed in special classes.

    Here are some of my difficult child's symptoms.

    -He has strange hand movements. He curls his fingers most of the time, clenches them into fists, and has weird hand postures.

    -He is extremely oral. He sticks EVERYTHING into his mouth.

    -He has encopresis, but I think it's due to chronic constipation.

    -He talks incessantly, and is very CREATIVE. He talks just to hear himself talk, and makes up wild stories.

    -He doesn't respect others personal space. He puts his face, hands, and feet in others people's faces all of the time. He used to rub our arms up until the age of 4.

    -He has threatened to kill himself, and to kill his grandmother. He talked of putting poison in her drinking glass, drowning her with the pool cover, and electrocuting her with the lite brite electrical cord. When he was mad, and didn't get his way, he pretended to cut me up with a chainsaw. I have no idea where he gets this stuff.

    -He has difficulty following directions, and he doesn't like to be given instructions.

    -He was afraid of jungle gyms until the age of 3 1/2. He wouldn't ride his tricycle until the age of 4, and just now started to ride a bicycle with training wheels. He is doing OK, but it's slow going. He mostly walks the bike and rides slowly. Plus, he can't seem to figure out how to stop the bike or turn it.

    -He likes to dominate others, and doesn't really like to have 2 way conversations. If you say something that he doesn't like, then he will have a tantrum. If you ask him a question, then most of the time he won't give you an answer, or he will ramble on about something else.

    -He is intellectually gifted, but socially immature.

    -He has a lot of energy, and bounces off the walls; although, he does have a really good attention span. He can sit through a 2 hour movie, or through other activities.

    Anyway, I will stop there. He is pretty much on target developmentally, with the exception of what I have noted above. Does anyone have any idea of what he could be suffering from aside from ODD? I am not looking for a diagnosis, or medical advice. I am just looking for some insight, or for someone to point me in the right direction. Any words will be greatly appreciated.

    Thank you.
  2. SRL

    SRL Active Member

    Hi Ohio. I'm glad that you found us. Given what you are describing, I think you are wise to keep looking for answers. ODD and the Occupational Therapist (OT) issues you are describing usually are signs of an underlying neurological condition.

    You really need to add a complete speech/language evaluation to what you already have. The difficulty in following instructions is often due to what are called language processing problems. The lack of two way conversational skills can also be due to the same, but also can be indicative of deficit skills in an area called speech pragmatics (social language). My son had some variations of most of the issues you describe above (except encorpesis) and it was the subtle speech issue that finally triggered my search for answers. Because he was functional in preschool and the outside world, no one else caught what was going on.

    We are only parents here, so obviously we can't diagnose. Take a look at this information on Asperger's Syndrome and see if it doesn't ring a bell. It's very frequently missed by doctors in young children, especially if the child has have good solid home support. Asperger's is the highest functioning of the Autistic Spectrum Disorders.

    There is another disorder called Nonverbal Learning Disabilities which presents fairly similar to Asperger's in young children. Kids with NLD often will have more heightened issues with personal space and gross motor skill problems.

    At any rate I think you do need go further evaluationwise. Pediatricians tend to refer to therapists to get the parent help with behaviors when the child really needs more in depth assessment. Beyond Occupational Therapist (OT) and speech/language, you should also include an evaluation by a developmental pediatrician or a pediatric neuropsychologist, depending on what's available in your area. Also, gross motor skills such as riding a bike fall are gross motor related which are under the umbrella of physical therapy so you may want to look into PT as well.

    After reading this, you're likely overwhelmed but it also might be good to get the ball rolling for a public school evaluation if you are planning to send him in fall. I was in your same shoes searching for answers when my difficult child was 5 (March birthday) and decided to delay entry to get our ducks in a row. Making a formal written request for an evaluation with the district will kick legal time lines into gear. in my opinion, it's better to contact them at this point than to wait until school starts becuase by waiting you're far more apt to get a "Let's wait and see how he does" answer as opposed to a Let's dig in and learn what we can about this child in order to help him be successful in the school setting".
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi. You got great advice and good sites from SRL. I also held my son back a year (he ended up being on the autism spectrum, high functioning). It's hard to get a High-Functioning Autism (HFA) diagnosis. in a young child because it shows up more glaringly as they get older (and start struggling even more socially and sometimes also academically, even if they are gifted). I think it's good to get Occupational Therapist (OT), but I wouldn't count on an Occupational Therapist (OT) or a Pediatrician to diagnose him--in my opinion you need somebody more specialized. A Developmental Pediatrician is a good start, but I'd also recommend a Multi-Disciplinary Evaluation at a Children's or University Hospital so that he can be assessed on all levels. At such a young age, you still may not get the right diagnosis, but you CAN get direction so that you can help your son with his problems, both socially and academically. THe school should also be involved, but, in my opinion, I wouldn't allow the school district alone to make a diagnosis. I never had good luck with the school district nailing the problem with my son--in fact they tried to gloss over things. It is in the school's interest to hold back supports because it costs them $$$ so I always got private evaluations, where the professionals were not biased. We had our best luck with a neuropsychologist, so that's another possibility. A neuropsychologist will do an intensive evaluation--hours of it--and can usually pinpoint problem areas and what they mean. All of us are just guessing, but sounds like it could maybe be Aspergers Syndrome. Many of those kids are brilliant, but very quirky. Early intervention is the key here. in my opinion, it sounds like more than ADHD, and ODD rarely stands alone. It's kind of a red flag warning that something else is going on that is causing the child to be defiant. Good luck :smile:
  4. SRL

    SRL Active Member

    Let me clarify this for you since MM's post and mine might appear to contradict each other. What we suggest is that you go for the most complete evaluation you can get so you aren't just treating symptoms such as behaviors and motor skills. Specialists can diagnose within their own specialty areas but only a professional such as a developmental pediatrician or a pediatric neuropsychologist can give a child (or rule out) a diagnosis of an underlying condition such as Asperger's. We really don't know what you are dealing with but think you need to get "the works".

    See your pediatrician to request a multidisciplinary evaluation at a Children's Hospital or university hospital. This should include the specialist to evaluate for any overall condition, along with an Occupational Therapist (OT) (fine motor and sensory), speech/language (speech and language processing, social skills), audiology (to test for hearing), and PT if there are gross motor issues involved. Doctor's are often reluctant to do this and may need pushing. We see way too many kids coming through here who are having issues due to piecemeal evaluations instead of digging in deep and getting to the bottom of it

    At the same time you want to get the ball rolling with the school district. Some of the assessments may overlap depending on the timing, but they can provide valuable information to supplement the private evaluation I've outlined above. The evaluaitons are free and by making a request in writing you have the first step done in determining whether your child qualifies for school services. Even by making this request now, if he were to qualify for support services at school, he probably wouldn't have any formal supports in place until well into first semester. If you delay and see how things go, it could be longer depending on how swamped the district is.

    Since you asked for info to dig into what might be behind this, I also suggest you look into Tourette's Syndrome. Here's a good site for that:
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Yep. What SRL said. That's exactly what I meant!
    I have a NVL (Non-Verbal Learning Disability). From my understanding, the only difference between NonVerbal Learning Disorder (NVLD) and Aspergers is that you have better social skills, however you still have many problems reading social cues and often with understanding other people. It's worthwhile to help anything that may be a problem earlier rather than later. You may encounter a waiting list for a total evaluation, but it's well worth the wait :smile:
  6. SRL

    SRL Active Member

    neuropsychologist evaluation costs vary widely depending on the number of hours of testing as well as the the area of the country that you live in. Very often you can get insurance coverage if your pediatrician does the referring. If there is no qualified professional within the systems, many will cover an out of system professional with that referral.

    Write a letter to the district requesting a full and complete evaluation. They don't need much info in that letter but you can mention probable problems in the areas of sensory processing, gross motor skills, and difficulty in following instructions. That should be enough to get scheduled for an initial appointment. Send a copy via certified mail to the director of special education of your district. Certified mail is important as it will give you a date of their receipt.

    Has he been in preschool and if so, how did he do in that setting?

    For what it's worth, I thought my difficult child knew exactly what was expected of him and was choosing not to follow instructions out of stubborness and when we got to the other end of the evaluations it turned out he had a slew of auditory and language processing problems that he was compensating for as best as he could.

    Hang in there. We know how hard it is, and even harder with you doing this on your own. If you haven't already done so, please pick up a copy of Ross Greene's book "The Explosive Child" and check out the thread on it at the top of this board.
  7. Sheila

    Sheila Moderator

    Hi Ohio

    It's very important to send the letter to the school district requesting the evaluation via Certified Mail.

    There are sample letters in the Special Education Archives if you need them.

    Welcome aboard.
  8. SRL

    SRL Active Member

    Which is better would really depend on the qualifications and skills of the individual specialist. Professionals that look good on paper can turn out to be duds, and visa versa.

    A neuropsychiatrist is a psychiatrist that delves more deeply into neurology. This is not a common specialty area used by parents who visit here so I really can't offer much of an opinion but there is a definition below. This comment "Psychiatrists or neurologists with many years of extensive clinical, educational, and scientific experience in the field of neuropsychiatry may also merit this specialty designation": makes me a little nervous since it suggests doctors may be able to just attach it to their qualifications, since it's only recently become a formally approved medical subspecialty.

    Neuropsychiatry is the medical specialty committed to better understanding brain-behavior relationships, and to the care of individuals with neurologically based cognitive, emotional, and behavioral disturbances.

    What is a neuropsychiatrist? A neuropsychiatrist is a physician (M.D. or D.O.) qualified to practice neuropsychiatry by virtue of either 1) primary training in either psychiatry or neurology followed by a period of at least one year of fellowship training in neuropsychiatry/behavioral neurology, or 2) formal residency training in both psychiatry and neurology. Psychiatrists or neurologists with many years of extensive clinical, educational, and scientific experience in the field of neuropsychiatry may also merit this specialty designation.

    Which patients are best served by neuropsychiatric consultation or treatment? The Neuropsychiatrist treats people with neurologic illness and cognitive, emotional, or behavioral problems; individuals with combined psychiatric illnesses and neurologic conditions; and individuals with atypical or refractory primary psychiatric disorders in which there is concern that an underlying neurological condition may be causing the "psychiatric" symptoms."

    As for psychologists, there is a wide range of degrees and skills. Check specifically for one that lists pediatric neuropsychology--you may have to check out clinic or hospital links to find a description of the specialists.

    I would call the insurance back and ask if they have a developmental and behavioral pediatrician in the system or a pediatric neuropsychologist. If they don't, ask what the process is to get an evaluation approved. Thihs should allow you to check out all your options.

    Parents of special needs children in the area are usually excellent resources to find out about the various professionals in the area. Check to see if there's a group of parents meeting in your area. School districts sometimes sponsor such groups. Even if you don't suspect Autism an area Autism Society might be able to give you some local direction. This can be an excellent resource and can turn up some options you might not think about. For instance we have a top notch ADHD/ADD clinic in our region that does such a thorough and excellent job in diagnosing that I'd be comfortable in referring a parent there whose child had ADHD and any other combination of issues (including Autism, Bipolar, Sensory Integration Disorder (SID), etc) because I have complete confidence they'll get to the bottom of whatever is there. I wouldn't make that recommendation to the general public though because I know it to be true of our local clinic only.
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    in my opinion neuropsychologist evaluations are far better. They test areas of function. I'm not sure what a psycological evaluation is--I'm assuming to see if they feel he has psychiatric issues, but that's vague. I'd go with the neuropsychologist. I thought my son had ODD too, but he doesn't. Now that he's had the therapies he needs, he's a really compliant kid (and I never thought it would happen). There is a difference between being socially interested and being socially appropriate. Most kids WANT to interact with kids, but some just don't know how to do it, and it becomes more glaring as the kids get older. It's more obvious with my son at 14 than it was at 5. He didn't seem that different at five. I would worry more about it now, except my son seems perfectly happy alone once he gets home from school. In fact, he doesn't care about interacting that much. But when he was really young, he did like to run with kids and get silly with them. His eye contact was good with us, but not good with people he didn't know. It's best to get an evaluation rather than guessing, which is all any of us are doing.