Frustrated and angry

[Babbs]

Although I don't post much, I've been reading this board on and off for some time and appreciate the opportunty to vent when its desperately needed.

I have an 8 year old difficult child whose current working diagnoses are AD/HD - predominantly inattentive type, major depression, generalized anxiety, and rule out Asperger's Syndrome. difficult child has significant social skills issues, written expression difficulties, and can become very physically aggressive (thrown knives at me, fireplace tools, glass vases, punched me in the stomach and face, spit, and bitten all in the past 6 months). We've been working closely with a behavioral specialist who is an ARNP (she's awesome) and a psychologist who has 25+ years experience working with-kids with-significant behavioral problems. In the past two years we've come a long way - but difficult child's violent outbursts are primarily between March and June leading up to the end of the school year and then a summer long visitation out of state with difficult child's father.

I had filed a motion with the court requesting that difficult child's father be found in contempt - long story short, ex has refused to provide weekly counseling per the divorce settlement, he refuses to provide Rx medications (says that I medicate difficult child into a state of compliance), refused to provide a summer school program equivalent (per the divorce agreement) and refuses to pay his 50% of uncovered medical expenses unless he tactitly agreed to the visit. And of course, ex denies that difficult child has any of the above diagnosis, so he will pay none of the $5000 of uncovered expenses for the past 3 years.

Well, I just got ex's response to my motion - he is representing himself due to financial issues (he states) which I'm sure he expects the court to automatically be sympathetic to him. Apparently, the loss of 7 weeks of summer school and counseling would not be truly detrimental to difficult child's well being. Arg, how many of us know how hard it is for our kids to catch up every fall??!?!! And he had 3 months to arrange weekly counseling, but as of today, ex is awaiting a call back from a psychologist to place difficult child in a weekly adolescent social interaction group - um hello? difficult child is 8 years old with the social skills of a 4 year old - needs to be around typically developing peers! Oh, and ex complains about why such a small supply of medications are sent with difficult child every summer... hmm, perhaps, as I've explained for 3 years, they are class 2 drugs and can only be prescribed for a 30 day supply and my insurance won't pay for the refill until 5 days before it runs out?

Oh, and because I'm an Occupational Therapist (OT), apparently I have all the medical training to know and understand what needs to be said and how to coach our minor child into saying what is needed to be said in order to convince any healthcare provider that difficult child is a special needs child with ADHD. Ex apparently has decided to completely disregard three separate psychological reports which are based on direct observation of difficult child in school and in an office without my presence, which are also based on direct IQ testing (25 point spread between verbal IQ and processing speed!), direct testing before and after medication administration on the NEPSY, and reports from both child care providers and four years of teachers reports on school behaviors and performance.

And last but not least, I'm apparently suffering from Munchausen by Proxy Syndrome - completely disregarding the fact that MPS patients create physical ailments in the child and target age for children is preschool age. Apparently I divorced a doctor (he has a GED) who can diagnose a syndrome without direct patient contact.

So as a result of this, ex is requesting that I have a psychological evaluation, practitioner to be appointed by the court, requesting that he be relieved of summer school and counseling responsibilities because he just wants to enjoy the summer with difficult child, that visitation be changed to increase his time with difficult child, and that he receive primary custody of difficult child.

I am soooooo hoping that the judge takes one look at this document and writes off my ex. I have affidavits from both difficult child's psychiatrist and behavioral specialist, emails for the past three years where I calmly ask for information and ex tells me he's going to do what he wants and that I need to go seek psychological help, and a lawyer.

What really worries me though, is that I haven't been able to talk to difficult child in over a week - last contact indicated no medications being given, in daycare with babies and 2-3 years (no kids same age group let alone no kids school age at all!), taken to play dates with 4 year olds, allowed to shoot BB guns and paint ball guns at things to destroy them, taken to PG-13 movies (difficult child though Transformers 2 was hilarious - when I asked "is blowing up people and things funny?" I didn't get a response), and according to ex difficult child's "behavior changes drastically when call...more prone to acting out and communication skills revert to a younger child."

I've tried so hard to keep calm every summer and especially this summer knowing that difficult child wasn't going to get medications, counseling, or summer school. Not being allowed to talk to difficult child is even harder - but listening to difficult child bounce around for 5 minutes and then want to be off the phone to get dessert was even harder. I'm sick with worry after reading this response and so desperately want to belive that the judge won't side with ex on any part of the contempt request - the lawyer's secretary forwarded the reponse via email but haven't been able to talk to the lawyer. And on top of it all, I'm 22 weeks pregnant and my blood pressure is going through the roof and so I'm worried about the baby as well at this point.

I just needed a place to vent and get all this off my mind - I don't know if anyone has good advice that I can follow at this point. I know I have a good lawyer who will take care of things courtwise, difficult child has good medical and psychological care that can help with depositions if need be and has a good team to come back to to help with transition to home, but it still makes me feel helpless.

 

[Marguerite]

So I gather that difficult child is spending some of the time living with his father? That does make it difficult because kids such as you describe need consistency and he's not getting it.

Besides, how can he have Munchhausen's by proxy, if you're not always totally in control? Your ex sounds like an idiot.

What you can do - play along, at least with the request for you to have an evaluation. The best defence you have for this, is your own clean bill of mental health. Ofcourse if they find you are stressed that would be understandable and shouldn't be seen as an indication that you have a problem. Of course you would be stressed - any parent in your shoes would be. But you need to make sure that you don't display the hallmarks of Munchausen's. The trouble is, you already have some of them (as do I, so I do understand, I've had the same accusation).

For example, you are medically knowledgeable. THis can make some people suspicious. Of course with both you and I there are valid reasons for this. But you do need to make it clear in consultations that while you have good knowledge in your own field of expertise, you need the doctor's professional eye in the areas outside your scope. Kowtow a bit. Admire. Ask questions and appear to value the answers.

Your relationship with the patient and with medical staff - the definitions of Munchhausen's are contradictory here, they can get you coming or going. But maybe the best thing you can do is make sure that even while you are with your child, where possible encourage your son to speak for himself. Don't answer everything for him. If he can't answer a question that is OK, because you do have the info yourself and sometimes, the child's inability to answer is itself an answer of use.

Most important - when anyone suggests Munchausen's, NEVER run away. Some parents respond with anger and by removing their child from the care of whoever suggested it. But that is exactly how someone with Munchausen's would respond because if they suspect someone is onto them, they can't risk getting found out. So instead of running, stand your ground and say, "here I am - examine me!" Someone with Munchausen's will have no continuity in their medical file. They are constantly on the move, constantly getting angry and storming out in a huff to go find another doctor more willing to beleive their malarkey. Of course after a long period of time it becomes increasingly difficult to do this and not meet someone who has either heard of them or crossed paths with them before, so the typical file is one of increasingly short stays here and tere, usually with attempts to cover access to past history. So if you make sure past history is an open book and actively cooperate with copies of files, names of past doctors, have a long history with one practice - that is the biggest nail in the coffin of a Munchausen's label.

The trouble is, someone who is genuinely ill but frustrated with lack of a diagnosis can show a very similar pattern. That's why I always tell people - if you go elsewhere and get the answers you have been searching for, always feed back to previous doctors. Let them know, for the sake of closure, because one day you might need to have your name cleared of all suspicion.

Not all Munchausen's by proxy create physical ailments in teir child, nor do their children need to be pre-schoolers. One sad case I know of, the condition was tricky and the one the mother was trying to prove (and which the teenager was diagnosed with) was a fairly new condition which was getting a lot of publicity at the time and the mother was determined to prove that the condition was potentially fatal. Whenever anyone suggested that the child needed to see a psychiatrist to assess for depression or the long-term effects of being chronically ill for all her teen years, the mother would have the child discharged from hospital and often would change doctors. As the child got sicker and sicker, all information on the child's condition was increasngly withheld and only divulged to a narrowing circle of supporters. Finally they had run out of doctors and hospitals, the child was discharged and died at home. The child became a martyr and symbol of the frustrating fight between mothers and unsympathetic medicos. The mother would spout loud and long about how she would prove tihs and confirm that but her pattern was, if ever she made a statement which later turned out Occupational Therapist (OT) be wrong, she would never correct it. But she would crow constantly if she was NOT proven wrong. The teeneager had apparently requested a post-mortem to be done; the results were never released. I suspect the results were either inconclusive, or indicated death due to lack of medical intervention because te moter was at tis point refusing to allow any doctors near the child if they so much as mentioned "psychologist".

So when the accusaiton was made at me, I did my best to do the opposite.

I have a good friend who is also a health professional who had some worrying symptoms. She had enough medical knowledge to try to discuss her case with her specialist who immediately got snaky about it and accused her of "Ulysses Syndrome" (which I had never heard of). It's one of those labels thta gets you coming and going. As a result, the specialist refused to operate on her until she was "symptomatic."
"But I'm already in a lot of pain and having trouble walking," she said.
She waited another 18 months before tey operated (another specialist) to remove a tumour the size of a grapefruit from her spine. The Ulysses Syndrome label had prevented surgery earlier when the tumour was much smaller and more manageable. She now is permanently disabled due to the damage tey had to do to get the tumour out. "Ulysses Syndrome" states that the person is over-concerned with their own medical welfare and imagines they have things wrong withthem when in fact there is nothing; they go searching for answers until they get something. In this woman's case, she already had a big problem and they were ignoring it almost to punish her for her medical knowledge.

If she had been male I doubt they would have had this attitude.

You shouldn't have any problems with the reports, surely - how can you persuade a neuropsychologist to 'fake' an assessment?

Good luck with tihs, makesure your medical history has a very long arm and get a letter from your doctor stating how far back your records and your son's records can rach. If the doctor has access to records form other past doctors that also should put paid to that accusation.

It's a nasty one. I hate it.

marg

 

[Babbs]

Marguerite,
thank you for your insightful response. I've had difficult child with the same behavioral medicine specialist (ARNP) for 3 years now and the same therapist for almost 2 years. I have established a long history with both, have always signed for releases of records for other medical practitioners (e.g. the therapist difficult child saw last summer during summer visitation), and have had my own therapist for the past 1 1/2 years as well. So I do at least have that long record.

After writing my vent yesterday I had a long conversation with a friend who is the CHADD chapter coordinator for my area. Apparently, in the US, there has become an increasing trend among school districts to accuse parents of Munchausen's by Proxy when they attempt to advocate for an AD/HD's needs and many of the CHADD coordinators have started hearing this from CHADD members. <sigh>

difficult child spends approximately 7-8 weeks with ex every summer, alternate winter and spring break holidays so approximately 8-10 weeks total out of the whole year. It's a hard transition between households and takes difficult child about 4-6 weeks to get back into routine once home with me. My main hope at this point is to stay focused on that I requested ex be found in contempt for not following the court order and ex basically documented that he wasn't doing summer school and counseling per the court order and hadn't paid for medical expenses per the court order. And that the rest of the **** is just smoke and mirrors on his part...

 

[Marguerite]

As long as you can easily deflect the smoke and mirrors and keep the spotlight on ex's failure to meet court orders, you shouldn't go far wrong.

it's annoying, frustrating and upsetting to get the Muchausen's accusation and frankly I think it's defamatory (and actionable) but I agree, keep your eye on the ball for now.

It's a common (and nasty) tactic, to "play the man, not the ball" as a means of distracting people from the main issues. It's common in politics too.

Go get 'im!

Marg

 

[AnnieO]

I'm glad you've posted this. I don't feel quiet so frustrated any more. husband's ex sounds a lot like your ex.

I have some good news - it's fairly tenuous, though, so just keep it in the back of your mind.

IF you keep presenting stability to difficult child...
IF you don't disparage ex to difficult child...
IF you continue down the path you have already started...

SOMEDAY difficult child will (likely) see what's going on. And make a decision about the person who truly cares.

I wasn't sure difficult child 1 would ever be saveable. But I know now that she is.

As for the Munchausen's by Proxy... as Marg said, don't run. Let them examine you. You'll be fine. {{{{{HUGS}}}}}

 

[Babbs]

So I've been playing phone tag with my lawyer who's been out of town and finally got to talk to difficult child for the first time in a week and a half. Lawyer's pretty sure the judge will see through the Muchausen's stuff - after reading up more on it, my ex is basically accusing me of child abuse and I'm sure not going to stand for that!

I asked difficult child if he's told his dad he's going to be a big brother. Response was "I sort of told him." When asked how did you sorta tell him, difficult child said "I told him I didn't want to live up here with him for the school year because then I wouldn't get to be with my little brother." Oh man, now difficult child is getting pressure to say that he wants to live with his dad. <sigh>

Just keep swimming swimming swimming just keep swimming...

 

[susiestar]

I am glad you got to talk to difficult child today. It is so sad when a parent pressures a child to live with them. Especially when that parent is setting the child up to fail by not getting the help the child needs. It sounds like your ex is a total jerk and not a great dad.

A big high five to difficult child for telling his dad he didn't want to live with him.

Sending patience for the phone tag with the lawyer, and hugs for your battered mommy heart. It is so rough to see someone you once loved act so cruelly and use your baby as a pawn.

Be gentle and kind to yourself. Treat yourself to something that will help recharge your batteries. Paint your nails, use a special conditioner on your hair, go for a nice walk, whatever sounds good to you. You deserve it!

Hugs!

Susie