careful eye on my 5 yr old's development

[bzymomto4]

I am new to this board to day. I had earlier posted a very breif synopsis of my family history on the general boards(with a title of ODD), but mainly looking for people to share what information they know with about odd in young children. If there is someone out there who doesn't mind reading that post, and commenting on this one, I would be so appreciative. With 4 children and 16 yrs as a parent I'm sure you can imagine the whole story could never be said in one post, but if there is someone who can offer thoughtful reflection on their experinces and parenting sucesses and failures, it would certainly be worth the typing. I am such a believer in awareness and prevention, but more and more all the time I don't think psychiatric professionals let that happen. I feel very much on my own to be the perfect parent and prevent it all, or watch another child sucumb to a life of mental illness, descrimination, and lost opportunities.

 

[tiredmommy]

Hi BZ and welcome. Here's the part of your post in General that references your five year old:

My real concern comes with my 5 yr old. I tried to go back to work when he was 2 - I worked for about a yr and during that time he suffered with first an imature and neglectful nanny and 2nd he spent a short time with a boarderline psychotic nanny (we figured her out rather quickly). It's difficult to know their total effect on him ( he lost lang for 6 mo) but I have noticed that while he is getting more outgoing and conversant in many settings , he is still defiant when it comes to what is most difficult which is fine motor. He trys to control me when we are working at home and says no to the Occupational Therapist (OT) when at therapy about everything, but is cooperative with his swimming instructor or his skating instructor, as well as in nursery school. My question is does anyone have a chld with odd that young? and what types of parenting techniques can help? or help to prevent these behaviors.

I have a child that received an ODD diagnosis at age three, it's not easy to swallow. Using The Explosive Child by Ross Greene has been a lifesaver for my family.
I have a few questions:
What sort of evaluations has your son had? Language loss or regression for any substantial period of time is a huge red flag for autistic spectrum disorders.
What triggers his ODD episodes? Most of our kids (though not all) have some kind of underlying condition. I imagine frustration plays a big part in your son's difficulties.
Does he have any other apparent delays other than fine motor and speech, such as sensory issues? This too can make it near impossible for a child maintain good behavior.

 

[bzymomto4]

My 5 yr old is very much the way my 16 yr old was when he was little. As I talk about one of them having odd, and worring about it in the other, they were both quiet, placid infants, easy to transport and very flexible. my 5 yr old rarely cried as a baby, even to eat. I always thought it was because I had been a labor and delivery nurse who was nursing a 4th baby, so naturally I picked up on feeding cues quickly. My 5 yr old has had a full evaluation by a developmental pediatrician at the U of R as a result of his kindergarten screening. screeners thought he had selective mutism ( he does come from a very long line of shy kids) The developmental pediatrician said that all he was just shy , all he needed was a teacher to wink at him. He loves to play with other kids and historically has made friends very easily, I think now he takes a little longer with that than he used to. He generally will not talk to adults unless they are very engaging or pretty 20 yr olds with big smiles. He hasn't expressed any complaints with physical sensations or bothersome noises, but he is peticular about germs. doesn't like anyone touching his drinking glass, food, or other similar utensils. he also doesn't like kisses, except on the far side of his cheek. about 6 months following his developmental evaluation we had an evaluation done by the school psychologist as part of getting the Occupational Therapist (OT) services. He felt like J should have trauma counseling as a result of the nanny's - but it's very hard to get an available p doctor to see you if your child isn't cutting themselves. he said j is very oppositional and at risk when he gets to school - I kept him home from kindergarten for an extra year. He will have difficulty getting along with teachers and compling with classroom rules. fortunatly we have gotten some great adults into his life this year which I am hoping will help. He adores his nursery school teacher, his skating instructor, Occupational Therapist (OT), and swimming teacher. with the exception of nursery school, these are all private lessons and i truly hope they let him trust again. We have also seen huge improvement in his behavior at hockey - this had previously been a problem and though we would have to take him out.

 

[SRL]

With the loss of language, motor skill issues, quirkyness about germs, and oppositional behaviors my mind went to Autism Spectrum Disorders (ASD)'s as well.

How would you answer these questions, going back from birth to the present?

2) Does/did the child
a. Favor objects for play that aren’t typically used as toys by their peers (such as wheels, sticks, magnet letters, etc.)?

b. Seem fascinated or obsessed by objects/topics that aren’t typical for kids of their age(such as numbers, the alphabet, words, math, geography, mechanical things such as air conditioners or vacuum cleaners, things with motors, etc)?

c. Play “differently” with toys or household objects (such as spin them, line them up instraight lines, set them up in formations, etc.)?

d. Exhibit weak or unusual pretend play skills such as:
-Act out memorized scenes from books/films/TV/DVD instead of
creating situations and dialogue
-Move toy trains around but not pretend to be the engineer, go places, or pick up passengers
-Arrange pretend people or action figures but not create imaginary situations with them or have them interact with each other, etc?
-Display behaviors and/or routines that seem unusual or quirky?

 

[bzymomto4]

humm, he made friends with two sticks, bob and george, when we cut down the bushes out front. And he did replace them with the additon of Jeremey after they had been thrown away. he does just move train cars along and set up staged scenes with action figures, but he occasionally uses then to talk. Much of his efforts go to playing sports outside with his siblings, roller blading on his own, or playing the wii - which he became exceptionally adept at in just a few days. As far as pretend play he has only recently begun to do it alone. He would typically rely on my daughter to guide the game - which usually involves him dressing as emily and playing babies. He has no problem playing this with his sister, but he runs and hides if I, or anyone else sees him dressed that way.How does this sound? what should I think about doing?

 

[SRL]

When his speech emerged (either the first time or after the language loss, was it "different"? ie did he echo back questions you asked of him instead of answering? ie You ask "Do you want a cookie?" and he replies "Do you want a cookie?" instead of anwering "Yes"

Did he repeat segments of tv shows or books verbatim?

Also, at what age was he evaluated by the developmental pediatrician and how long did the doctor spend with you/your difficult child during that assessment?

 

[BusynMember]

I think he should see a neuropsychologist. Sounds like both big brother and five year old have some really strong signs for autistic spectrum disorder. That can often be seen as ODD, but it really isn't--it's a frustrated child who is wired differently exploding with frustration. I don't know any other disorder in which a loss of speech is common. Also, many autistic kids appear friendly--they just don't know HOW to socialize. My son always appeared friendly. Every child with this is different. I'm not diagnosing him--just saying there are red flags. I wouldn't trust any school evaluation, and often Dev. Peds. won't diagnose this young. However, I'd want him to have Autism Spectrum Disorders (ASD) interventions, no matter WHAT "they" say his diagnosis. is. My son wasn't diagnosed at five yet either, but I fought for the interventions anyways. I figured it couldn't hurt him and not getting them, if it turned out he had it later on, WOULD hurt him. He wasn't diagnosed until 11, but I knew it way before that, and he's doing great. I totally think the early interventions are what made him so high functioning. He isn't frustrated anymore or a behavior problem either. And this kid used to bite himself AND us--we really worried about how he would turn out. He's the world's sweetest teenager. Sometimes you kinda have to go with your gut. I'd want the oldest one evaluated too--they sound similar. Autism Spectrum Disorders (ASD) wasn't diagnosed as much--they didn't know as much--sixteen years ago, which is why it took my fourteen year old so long to get diagnosed. We went from ADHD/ODD (and the medications) to bipolar disorder (and the heavy duty medications) to finally taking him on a trip to meet other kids with bipolar. He sure didn't act like them and a few parents asked if he could be autistic. We evaluated him again. He's been off medications for four years and never been better. He is indeed on the high end of the spectrum. Don't let any diagnosis scare you. I totally recommend getting your youngest interventions and maybe checking out the oldest too. My own preference for diagnosticians are NeuroPsychs because they do intensive testing. Good luck!

 

[jannie]

So often we suggest to parents to get "interventions" Let's make a list of interventions that have been highly effective so that parents know what they looking and or should be asking for.

MWM, I'd love to hear your suggestions as you always tell us how effective and essential interventions were for Lucas.


I also want to preface...that special education and an IEP is definately the direction to go....but, and this is a huge, but...not everyone qualifies...there must be educational impact. Just because you have a diagnosis does not mean that a child is eligible for special education. I think as parents we need to fight and push for this, but many times parents the child are not found eligible for an IEP. The shcool says wait and see for impact. In my child's school, there are four kids diagnosed with aspergers and only two of them have qualified for special education services...This is a different issues...let's just focus on interventions !!

I'll list a few that I can think of...

Get a complete Neuropsychological evaluation !!

1. Contact the school system and let them know your child is disaplaying symptoms of autism spectrum and or let them know your child is diagnosed with Autism Spectrum Disorders (ASD), Pervasive Developmental Disorder (PDD), etc...

2. Get a complete speech and language evaluation. Ask or insist the school system to proviide Speech and Language therapy and/or consider private therapy (many insurance programs will allow speech therapy, especially with an autism specturm disorder) The therapy should focus on not only langauge development but pragmatics; which includes therapy for social language and communications. It teaches children skills such as turn taking, sharing with peers, give and take during conversationa, using eye contact, wait time and personal space. Ask for social skills training during the therapy.

3. Get a complete Occupational therapy evaluation which includes testing for Sensory Integration Disorder. Ask or insist the shcool system to provide occupational therapy and or consider private therapy (Many insurance prorgrams will cover occupational therapy, espcially with an Autism spectrum diagnosis).

3. Enroll your child in social skills classes and groups. Consider looking for small structured play groups in your area.

4. Read about social stories (Carol Grey writes many of them...and many others on the board have websites)

5. Use picture symbols to help your child with communication.

6. Consider play therapy

Personally I believe there are many benefits to private therapy..I definately suggest you contact your insurance companies. Even if your child get's services through the shcool system it is always helpful to have private therapy as well.

 

[SRL]

Jannie, I'm going to move your post on interventions to a seperate thread. It's a great idea and deserves seperate attention from us helping this mom sort out her difficult child! Thanks.

 

[bzymomto4]

Thank you, I have actually st up neurpsych evaluations for 3 of my kids. this doctor went through years of acedemic difficulty as a kid and really turned it all around as an adult. It's a good bio for my 16 yr old to see what determination and comittment can do for your life. I have done tons of reading this weekend and have concern that they all sound dyslexic as well. My 8 yr old has had anxiety disorder for ever. It was first noted that her anxiety levels were developmentally excessive and practically not even plausable for her age by her pediatrician at 6 weeks. They were noted by me from day one, and by her pediatrician at 6 weeks. She said she wouldn't believe it if he didn't see it but she had the most severe and youngest case of seperation anxiety she has ever seen. Over the years the intenisty of her symptoms has varied, the psychologist in NY said she could have bipolar, but we'll leave the diagnosis at anxiety for now. Here in MA I haven't been able to find an available doctor to call me back. I live down the street from McLean hospital, but they cannot see her unless she cuts her self or worse. Do you think this neuropsychologist will potentially make the diagnosis from their testing and medicate her? - or do they concentrate on other things?

 

[SRL]

Just so I'm clear: they've all had neuropsychology evaluations or they are all scheduled for one?

A neuropsychologist specializes in diagnosing neurological conditions. Heshe will take into consideration family history, parent input and interview, and results from previous testing but they also will do their own testing (usually fairly extensive) and base diagnoses on the whole works. They will make recommendations for further testing and seeing a medical doctor for medication evaluations, if needed.

 

[bzymomto4]

Some of them have had different degrees of testing over time, but the Nueropsych evaluations are coming up in February. I saw the office has a psychopharm person, but If they just recommend I find a psychiatrist we'll still never get in. Just to many seriously troubled kids locked in to all the spots. I had old charts and treatment summeries and I can't even get a doctor to consider reading them at this point. Violence sells around here. Preventive care and early treatment are only for friends of the family. In a time of research that clearly indicates that early treatment decreases the intensity and severity of illness and inproves life success, I am getting the impression you need to be to far gone for successfull outcome before being deserving of help. I my case I was only able to find treatment because I previously worked with the psychiatrist. I just don't have those connections anymore.

 

[SRL]

I believe it's more a factor of a shortage in these specialty areas as opposed to not recognizing the need for early help that's at work here. Currently there is an acute shortage of child and adolescent psychiatrists inthe US today which is forcing facilities to make extreme criteria such as you've mentioned.

 

[bzymomto4]

I believe that's true but I still feel resenetment for every Doctor that won't even give my daughter the opportunity of an evaluation before taking away all chances of saving her quality of life. If the illness gets bad enough, it isn't something you can get back... ever. I am from a family of young suicides. We are now at a point where non psychiatric doctors won't treat her because her anxiety level is too high - such as we experienced at the orthodontist yesturday. We called her primary doctor to prescribe a pretreatment for a anxiety and he said no way. so her treatments have all been cancelled. This dispite the fact she has some rare tooth pesentation that will abcess if not fixed. But now they feel her anxiety is too much and they don't do sedation because this isn't a proceedure that should be anxiety provoking. Shortage or not psychiatry is a shamful specialty who desides who is deserving of an appointment and who can't even get a shot. I m a medical nurse and it doesn't matter how many beds and doctors are available, every pnuemonia, heart attack etc etc gets treated. Even when it means I am at work 6 hours later than normal - leaving the hospital at 4 in the morning with BiPolar (BP). Doctors need to develop a conscience for their profession and find a way and make a way - Just as they want the hospitals and nurses to do when they deem a pt in need. Obviously this is a very hot button subject for me.