Hi Matty's Mummy, I was wondering how you were getting on.
First things first - breathe. Take a big deep breath. It will be OK - although we can't make all the hassles go away, your life is already stressful without piling more stress on top of it.
The way through from here is to stay calm and to reason it all out. You can do this - after all, look at what you have managed to do in your life, look at all you manage to live with and juggle. You are stronger than you think.
Now, let's look at your situation. You clearly have a family with strong trends running through everything. To paraphrase Cary Grant from "Arsenic & Old Lace", Asperger's, Obsessive Compulsive Disorder (OCD) & anxiety dont just run in your family, they gallop.
Now, to look at your life in general - your life is stress piled on stress. This means you are likely to have any underlying anxiety problems increased. The same goes for your family. You therefore all need to find some way of coping. If your way of coping is to increase your rituals, then that would mean your Obsessive Compulsive Disorder (OCD) would be more apparent. I'm not saying it's right or wrong, it just IS.
Is is possible your 4 yr old has learned this behaviour from you? Let's consider this. Think about it - how obvious has been your own Obsessive Compulsive Disorder (OCD) tendencies? What do you do, that is Obsessive Compulsive Disorder (OCD)? Now, think about it - what does HE do that is Obsessive Compulsive Disorder (OCD)? Under what circumstances? You say he started after he broke his arm on the trampoline (a common cause of broken bones in kids). A very young child (and I count 4 as very young, in this) is likely to have anxiety issues increase after an injury. Again, Obsessive Compulsive Disorder (OCD) is one way of coping. You may have noticed in your Aspie child, the occurrence of stims, or certain repetitive behaviours that seem to calm him down. It's pretty much the same sort of thing, him finding ways to help him feel safer. There is also the possibility that your 4 yr old is another Aspie, in which case what you are observing could be Obsessive Compulsive Disorder (OCD) or it could be some form of stimulant. And in that case, I doubt there would be very much learned component. If any.
I can really 'hear' your anxiety in your post. I don't blame you feelnig anxious and upset by this, but looking at it from the outside plus remembering my own experience, I'm fairly sure you're going to all be fine. I think this is unfortuntely a process you are going to have to go through. I was feeling anxious when it happened to be, but even more, I was ANGRY. I felt they were wasting my time and wasting the precious time available to my child, who each day was getting more set in his patterns and losing more time in which he should have been getting help. And while they fussed about me and my health problems (and tried to blame me) I felt they were squandering my son's chances of getting early intervention.
I'm sorry to have to say this - but especially considering how isolated you are, I think you have to endure this, to a certain extent. You just don't have the luxury of finding someone else. You have to educate the ones you do have, hopefully the paediatrician, when she calls you back, will help correct the misinformation for you.
Now, as to who you've had these problems with - is it a Community Health Service (or Area Health Service)? I'm not sure what they're called in your state, but they are commonwealth based, I think. I could ask my Occupational Therapist (OT) daughter, she's pretty good with the ins and outs of the health care system. She's based in Newcastle (a bit far south of you!).
We had our problems with the Community Health Service, but we stuck it out and in the end, it all turned around. We had to endure the process and show willing, in order for doors to finally open. And yes, there was a lot of nasty misinformation and assumptions being made to begin with, including the statement tat difficult child 3 was not talking already, because he was emotionally neglected (which was bunkum). Then we got the statement, "He's not talking because you don't talk to him, so he's not exposed to language."
I repied with, "That's crazy, we're a very verbal family, we talk to him all the time, not just me but the other kids and his father, we all talk to him."
They then said, "Oh, well then he's probably not able to get a word in edgewise."
In other words, at least initially, they have ALL the answers and will turn it around to always have an explanation that blames the family. That seems to be the first line of enquiry.
However, it is a FIRST line of enquiry. When the evidence quickly mounts up that it is far more than simply learned behaviour, I'm sure they will rapidly move to something more appropriate. I mean - how can they continue to hold that view, when it is so easy to assess and evaluate?
It is their job to try to find out what is going on. And because they are a clinic (I suspect) they will try for the easiest answer first. And for them, the easiest answer is "blame someone else". because if they can prove that this is simply learned behaviour, then it's easy to unlearn it, and in treating you they're treating the child(ren). That's effort for one, with multiple benefits for the family. An easy, inexpensive answer.
Here's hoping that your paediatrician comes through with some records for them to make it clear that they have got the wrong end of the stick. YOu have done a good thing in having a history with past practitioers tat you are happy to have out in the open now. That proves that you are not a Munchhausen's by proxy parent (and there is increasing debate thatMunchhausen's by proxy doesn't even exist, anyway). The people most likely to attract a Munchhausen's by proxy label, are the ones that always run and hide when someone makes an accusation of "you did this to your child". Even if such an accusation has not been made - yet - but just hinted at - eventually, if you keep running and hiding, you will run out of people tosee and word will have got around. And then they WILL investigate the label, often to the extent of ignoring any genuine health problems becuase the repeated running and hiding seems to vindicate their initial idea. Therefore - especially in an isolated area, unless you know you will get a clearer hearing elsewhere, you may need to stand your ground and face them down.
You've begun thinking more clearly in your later posts on this thread - your mind is a whilr trying to find ways of sorting this out. That's really good - keep it up. You were thinking of contacting your psychologist form Brisbane - do it. Any evidence you can come up with, any advocate you can find who is prepared to say, "I have known these people for some time, the mother's Obsessive Compulsive Disorder (OCD) is mild and of long standing, was not readily apparent for some years, the youngest didn't start showing Obsessive Compulsive Disorder (OCD) until sudden trauma in the form of a broken arm sustained in play on a trampoline."
The psychologist may have something to say about your dream - but frankly it seems inappropriate for her to make such a suggestion to you under the circumstances (that you had to be careful you didn't start seeing your childrens' faces that way). I mean, really! A dream is not under your control, you clearly could distinguish between dream and reality, the symbolism in your dream is very much a matter of semantics - different meanings for different people - and on the first meeting, to analyse your dream so precisely, is a worry. You know what you feel about your sister in law and why. I doubt you would have been able to accurately convey this in a single session. If you were seeing all the people in your dream looking like monsters, including your children in your dream, and you then reported seeing monsters faces on people you were looking at while awake - then MAYBE she could have said it.
If you have no alternative route to take, I'm afraid you might have to keep seeing these people. "Show willing" and prove that you are prepared to stand and fight, rather than run and hide. And with these people, you stand and fight with evidence. Write your own analysis onto a sheet of paper, if you feel it will help. Do what I have done here - face the 'accusation' and go for it directly. Analyse it. Challenge it. Then if you have produced the evidence, dismiss it. If you feel you can justify dismissing this crackpot idea, then they should give your analysis consideration and hopefully it will speed up the process for them to also dismiss it and move on.
From the sound of your phone call to this person, I suspect she's already regretting what she said to you (about your son's Obsessive Compulsive Disorder (OCD) being learned behaviour). It may have just been a throwaway line? But from our point of view as mothers, we hear a comment like this, especially from a new person we're anxious to make a useful impression on, and we magnify it in our own minds to terrifying proportions.
So I do recommend you stick it out with this mob. However, you're the person on the spot, you have to make the call. You can't communicate a "vibe" to us effectively, perhaps if I'd been at your elbow during the appointment I'd now be screaming at you, "Walk away!"
What alternatives do you have? If you're isolated, there's not a lot of choice. You either find someone in the city to trek to regularly (and petrol ain't cheap) or you hunt around in your area to find a series of various health professionals you can consult with as part of a Health Care Plan. I'm not sure, ask the GP, but I think the various health professionals on the same patient's Health Care Plan are automatically permitted to talk to one another? They ARE authorised to feed back to the GP.
If you haven't already got this, and if there are enough services in your area (there should be in Mackay) you should be able to get the same sort of services through a Health Care Plan. You go to the GP who you feel comfortable with and ask for a Health Care Plan (for yourself, or for any of your children). You usually need to book a double appointment for this. The GP lists all your medications, all your health issues, then between you decisions are made as to what sort of specialists/ancillary services you want to try. You can see a psychologist, a physiotherapist, a dietician, an Occupational Therapist, a Speech Pathologist - a number of these, all under Medicare. It's not unlimited, I think you get 8 sessions? But it can be extended by the GP. And not all psychologists etc are registered for this, you need to check with the ones you wnat to see, if they are or not. You can't readily change (I don't think - ask the GP) so my suggestion is to try out the psychologist of your choice first to make sure you're comfortable with them. At least, that's what we did.
The success of a Health care Plan depends very much on the range of quality of health professionals you can get access to.
Now, to neuropsychologist assessments - they ARE available in Australia, I've finally discovered. OK, difficult child 3 is 15 and I've only just found this out, so they're not widely known about. But difficult child 3's new psychiatrist has requested a neuropsychologist assessment through his clinic, so they do exist. But considering how difficult it has been for me to find out about them, I suspect you might need to go to Brisbane for it. Hhowever, ask the GP. Again, it could be included in a Health Care Plan which would be fabulous.
The GP also gets extra money from Medicare for doing a Health care Plan for you. Once a Health Care Plan has been done, you can't go get another one from a different doctor for about 18 months (not sure of the exact time-frame). So don't just go to any GP, find one you're happy with. Of course, this doesn't mean you can't take your kid to another GP for something, it only refers to the Health Care Plan consults. The GP who writes up the Health Care Plan gets to be the spider in the middle of your health care web, getting copies of all letters sent to him/her, and also writing all the referrals.
With what you signed giving permission for people to talk to one another - if you really want to cancel this, you need to do it in writing and to include, in your letter, a request that your letter refusing permission be forwarded to everyone to whom the orignal signed permission was circulated. However, if this is aclini situation, two likely outcomes could eventuate:
1) The clinic may refuse to see your child/you any more, as it makes it impossible for a multidisciplinary team to coordinate their efforts; and
2) Especially in a small town, it may not stop them comparing notes. It should stop them, but a lot of rules get broken in a small town. It could even increase their talking to one another informally.
So before you actually send such a letter, ask them (over the phone) what will happen if you do, and how you deal with the copies of your signed permission that have already been broadcast.
Besides the experience I described earlier, of difficult child 3's language delay being squarely blamed back on me and my "neglect", there was an earlier interaction (at a different Family Health Clinic) concerning the pediaitrician there who was treating difficult child 1. With hindsight, I should have made formal complaint about the ratbag. But he used my health issues as an excuse to attack me through difficult child 1, blaming difficult child 1's "depression" on my "primarily depressive illness". In fact, he was trying to play psychiatrist with me, even in the face of my having seen a psychiatrist (who at the time was actually his boss, head of the clinic) who gave me a clean bill of mental health.
That time, I ended up walking away - you can't keep taking your child to see someone who you have just called an inappropriate practitioner with an unhealthy interest in the mother of his patient, to the detriment of that patient. And I called him that in writing, and the idiot was showing my letter all around the clinic. Definitely time for difficult child 1 to find a new pediatrician!
But the clinic with difficult child 3 - we stuck it out, even when they made us do family therapy. At the time I was an emotional mess, suffering from PTSD as well as some serious physical health issues. husband was falling apart from the stress (and undiagnosed physical issues) and they were having fun finding things wrong with us, the parents, which could take the blame for your child who was "odd". But as we talked and they did the therapy thing, they very quickly recognised that this was a door they could close. Subject checked out, investigated - and dropped. I think we had two sessions of family therapy, before they said, "We can stop wasting everybody's time, and get your son assessed. He is the main concern here."
Matty's Mummy, it's your call. But social services are stretched too thin for them to make any moves on your child. You love him, you're trying to get him help - no judge in his right mind would support an intervention, and I think you're a vast distance away from THAT likelihood! You've just got too much legitimate history, showing you've been doing what you can and more.
So relax. You'll be OK. But just to make sure, follow through on contacting old therapists and doctors so you can quickly debunk this false trail.
Hang in there.
Marg
