Long intro of a newbie!!

[CodysMum08]

Hello all. First a little introduction, Im Mary an American from Virginia currently living in Sydney Australia. My husband is Australian, yes we meet via the Internet---Dang Yahoo!! We have one precious little guy named Cody. Cody was born 25 weeks early Nov 02, he spent almost 3 months in the hospital and is a very healthy, active 5 year old. We are expecting our second child July 2nd---WOOHOOO 28 weeks along so far!!!!

From the very beginning of Cody's life he was one active kid!! As he grew, became mobile I knew he was hyperactive. When he was 3 we took him to the pediatrican because I suspected ADHD, but because of his age the pediatrician wouldnt label him. Sent us away telling us to just use positive reenforcment, and ignore the bad behavior. We tried, but Cody's behavior got worse, we took him to our local GP when Cody was 4. She sent us to have some tests done in May '07 and the report said he has "emerging" symptons of ODD. Cody has been followed periodically by the Growth and Development Clinic threw our NICU, who first mentioned behavior problems at 2 1/2 but I ignored them thinking he was just really fussy that day. Our last appointment with the G&D clinic, Nov '07, suggested he be retested to for ADHD to be added to his diagnosis.

Here in Australia the school year starts end of Jan. So Cody started Kindergarten this past Jan. At the orientation day I let the asst principal know he had these reports and that we had been seeing a behavior therapist since August 07. The school started immediate preps, having behavior people become involved to help Cody, his teachers and the staff learn to help him. To get the school extra funding for an aide we had to get him DEFINATELY diagnosis'd with ODD, because the reports we had said "emerging" and the school board wouldnt give him the funding the school needed for additional help in the classroom.

Cody started school 3 days after the other kids, to give the other kids time to settle in before Cody got there in the midst of all the excitment. The plan was Cody only attend 1 hour a day the first week, if all went well 2 hours the next week and so on until he was going full time. Well, it has not been a smooth ride!!!! He has been "in" school about 9 weeks and is still only on 3 hour days. He has been suspended twice for hitting. We have had to pick him up early about 3 times in the last 2 weeks, they are trying to be really easy on him and remove him if it gets too much for him in the classroom.

The school has recommended a behavior school in the area, we had a meeting there last week and REALLY hopeful he will get in next term. They said he probably would but not sure when because of shortage of staff. Tomorrow is the last day of this term, then a 2 week break from school and going back April 14th for the second term.

I am starting to lean toward medication, especially the past 2 days. Cody is serving out his second suspension and goes back to school tomorrow. Yesterday and today he has went into meltdowns, yesterday at the grocery store---screaming, crying, hitting. Today at the mall same thing, even started trying to bite me today because I had both his hands held in mine trying to get him to the car---practically dragging him!!! I got to the point when he was biting my arm, I put his hand in his mouth and told him if he wanted to bite to go ahead and let me know how it felt. Then I felt horrible later!!!

I just wanted to do an introduction of us in this first post. I have had a quick look around the forum and see there is so many posts I want to read threw. I so wish I had found this forum YEARS ago!!! I now have to go get dinner started and began bath, bedtime routine.

 

[SRL]

Hi Mary, and welcome to our forum.

I don't know your medical system but given the behaviors and the premature birth, if it were here I would want a thorough multidisciplinary evaluation done on him to include the following:

1) Evaluation by a developmental doctor
2) Pediatric neurologist to check for undetected seizure activity which can greatly disturb behaviors
3) Occupational therapy for fine motor skills and sensory integration
4) Audiology
5) Speech language for delays as well as social appropriateness of speech

My feeling is that you are probably looking at something more than ODD here. Premies often have sensory issues that contribute greatly to behaviors, recent research has shown a much higher incidence in Autism and Autisticlike behaviors in premies, or there could be a number of other things going on, but ODD rarely is a diagnosis on its own.

Either way, I would highly recommend that you rethink the school situation because I don't think it's right for a 5 year old to be sitting in suspension for behaviors that are probably neurologically based, undetermined, and untreated. Frankly I would pull him out of school until they had an opening or request a 1-on-1 aide to assist in the setting he's in because a great deal of damage can be done to a child by forcing the wrong situation. Do they have any type of homebound instruction or could you get him leave for a medical reason? Could you pull him out and delay entry until next year when you've been through the evaluation process and there's a plan in place for him? I'm not sure of your system but I would not want this to continue--his behavior is telling you something is really wrong in his world.

If you've been reading the boards you'll see that we highly recommend a book called The Explosive Child by Ross Greene for help with behaviors.

 

[SRL]

Also, I wanted to mention that some kids who are on the go constantly do so due to sensory integration issues and not ADHD. Treatment is different for these kids so you'll want to explore that:
http://www.tsbvi.edu/seehear/fall97/sensory.htm

Has he had any speech delays or differences?
How about lining up toys or other household objects into lines or formations?

 

[Lulu]

Hello and welcome! We're just starting to find our way with our 4yo boy, so I don't have any ideas or answers yet. But I think the more experienced parents on the board can send you in some helpful directions.

 

[Marguerite]

Mary, I'm not sure where in Sydney you are, but I strongly recommend trying to get him assessed ASAP for more than just ODD. From what I understand, especially given his history, I suspect Cody has something else underlying which is now emerging as ODD (in terms of how it presents).

Grab a copy of "The Explosive Child" by Ross Greene, get it from the library first if you need to (the bookshops will order it in for you too). There is also some good discussion on this book on this forum. Definitely it helps with the ODD issues, although it's not a cure.

Depending on where you are, I think you need to try and get a referral to either Sydney Children's (Randwick) or Westmead. Both have some really good staff that can help with complex diagnoses, especially with the history of prematurity. But they can be hard to get into, you may find yourself referred back to your local Community Health Centre. And THEY can take ages. If you do get referred back to the Community Health Centre in your area, nag hard for urgent assessment. Be prepared to have to go through some tedious and apparently time-wasting courses (such as 'how to play with your child') because even if it's seemingly pointless, they are still observing you and you HAVE to show willing in order to get to the next stage of assessment, report and therapy. At the age of 5, I would hope they will prioritise him.

Alternatively you could choose to 'go private' which will permanently cut you off from access to the Community Health staff, but at least things are more likely to happen faster. Similar to what SRL suggested, you need to find a combination of a psychologist specialising in learning problems, a pediatrician who similarly specialises in this area and also a speech pathologist. In the interests of a fast diagnosis for educational support purposes, put the pediatrician at the top of the list.

If you've not been given a clear diagnosis before this, you may need to shop around. Check with various organisations such as Learning Difficulties Coalition, see who they recommend.

difficult child 3 was diagnosed at age 3, although we'd been trying to get help before this. His initial diagnosis was via a pediatric psychiatrist who specialises in learning problems. He's based in Strathfield area (roughly) and although he gave us an initial report (which opened some doors for us) he referred us on, and it was finally another pediatrician who put difficult child 3 on stims a few months later. The result, for difficult child 3, was almost miraculous. I know they're not for everybody and I applaud doctors who choose caution, but for us it was the right path to take.

Your son should not have started school without a diagnosis. It's not your fault, it's the doctors reluctant to take a chance. They should understand the need for the schools to have access to support. Frankly, a wrong diagnosis is far less damaging than no diagnosis, because ANY diagnosis can get you support. No diagnosis - no support. From my experience, the pediatricians who have a better understanding of the interconnection needed between a diagnosis and the education system tend to be the ones who can best steer you through those years of education of your child.

And for those in the US - in Australia, it tends to be pediatricians (including pediatric psychiatrists) who are the most appropriate ones to diagnose and treat this sort of problem. However, if you bear this in mind but use SRL's list of who to try and see, you can't go far wrong.

The annoying thing is the time it can take to get the vital help the child needs. Given the problems he's having, plus the school being on side, you might have enough leverage to speed things up.

Good luck with getting the behaviour school placement, I hope they can help and that it is a good fit for him. Let us know how you get on.

Marg