I love my son BUT

[wolonfab]

Sometimes it is really hard to like him.... or rather his behavior.....Yesterday he lost it on the walk home from school.....and after being berated for my lack of love and being a big fat cow (he is only 6 mind you) he then informed me that he was not going to go to his mental health appointment cause he didn't want to play.....Its hard enuf to get these..he hasn't had one for 5 wks cause his new woman says she doesn't really have the time for him (what the?)... :smile:

I tried to convince him as all mothers do but after he destroyed the lounge room(well he threw everything from one one end to the other and then started to come my way with his bad scary look in his eyes) I seriously wanted to walk out of our house and not come back .... I know being a single mum is not meant to be easy but i am sure its not meant to be this hard either......I put him out side to run off the bad energy and he proceeded to run his bike into his sister repeatedly laughing all the while at me when i threatened to do it to him to see how he liked it :thumbsdown: .....

He then took my newly acquired railway sleepers (which weigh almost as much as a train I'm sure) and moved them all around the yard knocking things over in his path...After i got him out of the yard I banned the use of his play station (hoping he would go to his mental health appointment...one can dream) and he went feral..(imagine a mum telling a 6 yr old what to do!) He screamed and swore foul words that a little boy shouldn't know or ever say

I was left to call his mental health woman to say he refused to come in.... Her reply was "so what your saying is you don't want to bring him in?" .... of course you cant explain a child like My difficult child to them cause they don't get the behavior i get... he is perfect for them....:crying:...Even mum was shocked on the phone by his outburst yesterday.....

Mind you the day before he attacked a 6th grader twice his size ...they were playing and difficult child just turned(no reason for it) and knocked this poor boy down... split his chin......needless to say he was not flavor of the month and after school care.....when i turned up yesterday i was informed he had put his hand down the pans of one of the boys and in retaliation 3 of the boys wrapped rope around him while he played the play station and chocked him(he has bad rope cuts now) :sad:

At his recent review they said he cant concentrate in floor activities, rushes his work, has fine motor problems, severe anxiety, is a loner who gets into trouble outside, cant understand personal space etc etc but is a good helper who has become the rule enforcer for everyone (but him) in class.... I guess i can be proud... I am very tired bing a :warrior: mum ...... i need either a big pay rise or annual service leave..... Yeh right......

 

[Marguerite]

Hi, good to hear from you. I've been wondering how you were getting on. Still not great, huh?

A kid that size moving railway sleepers - I don't think difficult child 3 could do that now, and he's 13. Your kid has a helluva lot of strength.

I'm glad your mum finally was shocked by what she heard - she really does need to take him seriously. He is more than just a handful, there is a lot really wrong.

Did the therapist get the message that this wasn't you, it was him? What would have happened if you had forced this issue? Has it already got to the point where you can't do this in physical terms? If so, this is very bad. He is calling the shots and without being able to get a handle on why he is like this, as well as set up some strategy where under certain conditions, you have some control at least, life is going to get a lot harder.

Is this therapist any help? Can you go see her without difficult child, if he's refusing? I know it sounds silly, but difficult child 1's first pediatrician used to see me without difficult child 1, just take a report from me, some of the time. Of course, this would mean finding someone to mind him, which I know is a huge hassle with him.

Have you considered respite at all? Even if the diagnosis doesn't seem to fit, you DO have a diagnosis. Mind you, I can't lecture on this because I've never put difficult child 3 into respite, although people tell me I should have. But I also have more support than you, so I have had less need of it.

And sometimes, with the sort of respite you and I could access under these circumstances, they are impartial observers who see him for more than just the consultation period, they have him for long enough to really see what you're dealing with, and maybe provide their own ideas on what you could try.

I talked to easy child (one of the advantages of staying with her for a few days!) and she said in-home respite which would be for a few hours, is what you would be most eligible for (I used myself and difficult child 3 a few years ago as the example for her) and you would probably be able to access it through various local Community Services. The other sort of respite where the person goes to a care facility, is mostly only available if you're caring for frail aged or similar. Using respite regularly would not only give difficult child another person to observe him AT HOME, but also another influence.

It really seems strange (and very annoying/upsetting for you) that he is such a strict rule follower at school, but not at home where you really need it. And I know you do absolutely the best you can, you are a good mother. I could hear it when you and I talked on the phone, you have really tried everything and still done your utmost to be as consistent and firm with him as possible.

You have a difficult kid. He is not your fault. But you need to get on top of this - somehow - and I'm really at wits' end to know what you can do, with the state our health system is in.

With all the money our Federal government is throwing away right now in advertising campaigns for this and that (thinly disguised pre-election campaigning, with taxpayers money) you would think they could spare some to boost health services for diagnosis and intervention. Maybe the current negative publicity over that woman's miscarriage can open a door or two for you, if you approach your local state MP with the failure of the system to properly intervene here? The tricky thing is, some of what you need in terms of services and support is state-based, some is federal. And you're probably too exhausted to write letters or emails to anyone right now.

Hopefully someone else here will have more ideas. Meanwhile, my thinking cap is on - it tends to be anyway, where you are concerned. And now you've given me an update for my brain cells to work on!

Marg

 

[nvts]

Wow! Sounds like MY house a few years ago (as well on the rare occasion now!). I literally had to sit on my son when he was throwing his meltdowns.

Couple of thoughts:

1. Is there anywhere that you can get a neuropsychologist done nearby? (Pardon my ignorance, but I'm not familiar with how you "wonders from down-under" get stuff done - I swear I love reading Marg's responses because I HEAR that great accent while I'm reading!). It just seems that you don't feel comfortable with the diagnosis'.

2. I kind of get the impression that this therapist is one of those that believes "all problems with kids are a result of incorrect parenting". Gotta love 'em or otherwise you want to choke 'em! <span style="color: #CC0000">When you call the therapist and told her he wouldn't come "Her reply was "so what your saying is you don't want to bring him in?" .... of course you cant explain a child like My difficult child to them cause they don't get the behavior i get"</span> in my humble opinion she's not going to be able to help him.

3. I don't know much about medications. but a lot of people on here do. I know that they've mentioned often that certain types of medications can react differently with different diagnosis (sorry AGAIN for the ignorance, but I don't want to disperse incorrect info!) and some of them can cause more problems than they correct.

Trust me: most of the people on here have had the same feelings about their difficult child's. This doesn't make you a bad mom, it proclaims that you're a human being!

Keep in mind that you have another family here! :thumb:

Beth

 

[Sheila]

Sounds as if your child is really difficult. Hugs

I think we've all had days when we don't like our kids; it doesn't mean we don't love them.

I don't know how the system works in your country either, but if a mental health worker didn't have time to treat my child, I'd look for another. And the condescending attitude would probably be more than I could handle gracefully.

If possible, I'd place a camcorder or voice activated recorder in an obscure place to record difficult child. Seeing difficult child in action could help a professional in treatment.

 

[wolonfab]

Marg
Hmmm its been a hard few mths to be honest so I have been hiding and trying to get by.... I think I need a pysch though cause my head is a mess......
The therapist took over difficult child after pysch of 6 mths left... they didn't want difficult child to get new pysch cause they said she wouldn't get him... i am not allowed to say what life is like..she asked once and when I went to tell her she told me she is not there for me but only for difficult child and so she doesn't want to hear anything to do with behavior.... I am so glad that i have Burnside cause i was ready to throttle her......she now tells me that she will try and make room for difficult child when she next has time...she has had him for 5 weeks and seen him 1 time..she has hol's and time off and he misses out.......he said to me she musn't like him cause she doesn't see him so i get why he now doesn't want to go on her terms.....

difficult child has had respite twice in his life and both times it sucked...I told their team what I thought of their practices and their carers and needless to say they wont have us back on the books...the first woman lasted 3 hours with difficult child and the second lasted 1 night (while I was in hospital giving birth to easy child).....I now am to the point where if he is with me and I get hurt fine but what if he hurts someone else.....could do with a good sleep alone(difficult child wont sleep in his room still)....

I called the dept of educ on his current school and dobbed them in for being lazy and hopeless..... well woman called school and they called me... the following wk his teacher went to a seminar on autism.....and said to me wow I thought he was this way to be annoying to me..... she is now trying to understand and isn't making him feel uncomfortable...... they wont give me another IEP though cause the said they have done it and I wasn't needed to be there..... it was requested that it may be a good idea if difficult child goes to a special autism class in a suburb 2 times over...there are only 2 in this whole area and they are not easy to get into...I asked difficult children paed and he said it would be a great help for him......

problem with the rules is that he demands everyone else follow them but not him,...he doesn't like being told what to do so he doest listen......I wish the diagnosis and intervention teams were better..have to come up with money to get a occ therapy assess and more tests done and its not easy to find... Burnside said they will try to get us funding cause difficult child needs help now....

But even if i had the energy to write the letters i have no idea where to start and to whom to write to....


Beth
we don't have neuropsychologist here worse luck....the therapist has been having play time for 9 mths now...what she gets from it i am yet to learn...they say he is not pyschotic.....with re medications...we have tried 6 so far and i have left him off them only after he slit his wrist on Ritalin,.....sure they work but so far they haven't worked for him.....

Sheila
i have tried the video camera and he saw it and put on a show... he acted perfect........ i may try the tape recoder again...... cant do anything but try if i can find a little one that i can hide.....

 

[nvts]

I wish it would be easy for you to swing by and drop him off at my house! I know what it's like to have a little body in the bed every night - easy child (now difficult child 3) never has slept in her bed. We had 2 mos. when she did (I came up with the best trick EVER!!!) and it was heaven. The trick: The Easter Bunny put an alarm clock in her basket - "Oh" I said "the Easter Bunny must have decided that you must be so big and smart that YOU should be in charge of getting everyone up in the morning" she was GLOWING. "Here's what we'll do - we'll set the alarm for 10 mins. before I have to be up, and then you can come in, wake me, crawl into my bed and we can have our very own snuggle time before the boys get up. But you have to make sure that you stay in your room or you won't hear the alarm and then we'll ALL be late in the morning."

It lasted for 2 mos., then some idiot decided during lunch time the kindergarteners should watch "Monster House" which scared the crap out of her and she's back in my room every night.

Maybe if you tackle 1 problem at a time you'll get somewhere. I don't know, maybe "The Explosive Child" by Ross Greene could help?

I wish I could help! I'm praying for you!

Beth

 

[susiestar]

Not sure how your supports and schools and docs work, but sending hugs and prayers. I certainly understand how hard it is when the kid sleeps with you (or spends the night in your room. Do they ever sleep all night? at any age?). I also know how hard it is to cope with a defiant, demanding, mentally ill child bent on hurting others and himself.

Sending all the strength and support I can. Hugs, Susie

 

[Star*]

Hi there!

Don't believe we've ever spoken. My name is TLR aka Star. Glad you're here with us.

I read and re=read your post. No I don't have trouble with that Aussie accent haha, I just wanted to check something. Do you realize that you answer your own questions and very well at that??

You seem to already know that the mental health worker (a very fresh and out of school or non-interested one) is not a good match, fit, or worth the bother.

You asked yourself "Do I need a psychiatric?" Yes. We all do to be able to deal with these kids. No shame in that I'm finished after 11 years of once a week visits. IT helped my family, it somewhat (what my son would allow) helped my son rather he 'wanted' to go or not we went. Sometimes he would just sit with his arms crossed or a pillow over his head, or glaring at the psychologist, but we got in the pattern of going once a week. It's the repetition that pays off. OH and there were days when I had to drag him kicking and screaming but we went. That was just the way of it.

I went because I needed someone to talk to about the ABSURD life I was living with this child. Had I not gone a.) I wouldn't have the skills I needed to say "have a nice life" when he turned 17 and we couldn't do anything else for him and b.) It gave me the ability to effectively communicate with my son ie: no bargaining, no threats to take away this or that...What I said I did, and I stuck by my word. Yes there were days as a single mother I wanted to put him in a box and mail him to Australia. What I learned by seeing a psychiatric and eventually dragging my fiance into the mix was that everyone can use a little counseling - that would include your daughter too - she's as much a part of this as your son.

The other odd thing I wonder/noticed was that your youngest has allergies. Is it possible that your son does? Could this be a place to start with his rages? Get a copy of the Feingold diet or go on line to his web site. IF the sister has allergies it is probable that your son does too. It may/may not stop the rages.


And know this. Despite ALL THE BEST intentions and love, caring, reading, therapy, sacrifices, time invested, crying and anger you fell eventually your child will be who he is. Therapy can help, having yourself learn effective communication skills can help, preparing yourself for the future, will help, but in the end the therapy prepares you for the worst so you can realize that you and your son are not ONE person. You don't OWN his problems and he will some day be moving out. IF he's 6 (mine was) I can tell you it took me 11 years to prepare for 17....and even when the day came that his behaviors were such I could not endure it one moment longer...my brain was ready for him to go live on his own and do the best he could because I did the best that I could.

You're a smart mum....and you have great insight, seems to me you just need help putting the pieces of the puzzle where they belong and when you have a difficult child in your home? THAT is almost impossible to do by your onesies.

Get help.....you deserve it. And not from that namby pamby counselor. She's in my humble opinion worthless for your cause.

Hugs
Star

 

[Marguerite]

The IEP - I can't understand why they say they won't do it any more. From what I saw, they didn't do it last time either. And you DO need to be there, they can't say you're not needed, because YOU have to sign off on the funding and also you're supposed to have your own copy of the IEP.

The special class - go for it if you can get him in. It is the best chance regarding school, by the sound of it. I didn't know there was one anywhere near you, that's marvellous. I know of two possibles, both I would have thought way too far away from you. If they offer you Peakhurst, grab it. I know the principal there, she's amazing. But chances are, it's a totally new class placement since I last was "in the market". DET seem to be finally getting the message that a lot of kids with autism simply aren't coping in a full-on mainstream class - and neither are the teachers.

The video taping - if having a tape running means he is behaving for the camera, then keep taping. At least he is behaving! If he misbehaves, you have a record of it; if he behaves, you get a break. It's win-win.

The letter-writing - I would love to help, I could send you a sort pf pro-forma, something you could use as a template, and also work out a list of your own people to write to. Once you have one letter written, the rest are easier because you pick up the pattern quickly. PM me or phone me if you have the time/energy/inclination to have a go. I will understand if the thought is too overwhelming, but I am ready to help when you feel you have the strength.

The counsellor - is she psychologist or psychiatrist? I gather she's through a Community Health kind of clinic? I haven't heard of the name you mention and I can't ask easy child this minute, she's already in bed and asleep for the night.
But whichever it is, you should be able to access a psychiatrist through Medicare (for either of you) and if you get a referral from your GP, you should also be able to get a block of psychologist appointments for either of you. And if an appointment gets missed (because of you, or her) then this doesn't come out of your allotment the way it often does with Community Health (we had that experience with Speech Pathology with difficult child 3).

Allergies - I may have already suggested this, but have you contacted the Allergy Clinic at RPA? They have a unit which is working with food sensitivities and allergies in kids with a diagnosis of autism. Or do I recall you tried there already and had problems? If so, ignore the suggestion. To get to RPA you can go by train to Newtown or Redfern, or you can drive and they give you a parking voucher for free parking at the parking station below the medical centre. It's all bulk-billed, too.

Another suggestion - join the ASPECT forum and ask a few questions there which are more specifically relevant to a kid with an autism diagnosis in Australia. They might be able to point you to the info regarding your rights concerning IEP, for example, and other issues regarding education. Also, if you are a member of ASPECT you can register for Metropolitan Outreach. Ring them first and ask if this applies to where you live.

All you need now is the energy to do all of this, somewhere in your ample relaxation time!

Just one step at a time, one fragment at a time.It's all you can do. Don't feel guilty about what you can't manage, you have a great deal to cope with.

Marg

 

[trinityroyal]

Hello there,

You have already received some great advice about other items, but I want to chime in about food sensitivities/allergies and a diagnosis of autism.

My difficult child has a lot of food sensitivities which cause him to spin completely out of control. He becomes manic, paranoid and completely unreasonable. His therapist and psychiatric have compared the effect of the "bad" foods on my lad to the effect of cocaine on a neurotypical person.

What makes it even more curious and difficult is that the pattern of foods that he reacts to seems almost random. We haven't been able to find a clear link between the different groups. (Lemons, limes, melons, papaya, cranberries, mustard, most brightly coloured foods and drinks, etc.) The safe foods seem to be anything brown (e.g. meat, tea, coffee), white (rice, pasta, bread, milk), or green (vegetables). Fortunately that results in a very healthy diet.

When we started to recognize the food issues, we started tracking everything that difficult child ate, and observing its effect on him.

After several months, we were able to put together a chart of foods that difficult child mustn't eat. We have provided it to the school, the Residential Treatment Center (RTC), and anywhere else that difficult child is likely to eat or drink something. It has helped a lot with managing his uncontrollable behaviour.

I agree that it's probably worth a trip to the allergy clinic, but our son's issues were not technically an allergy, so I just had to make it up.

Don't ever think that you're a bad mom. You're doing extreme parenting. It's hard.

All the best,
Trinity

 

[susiestar]

Diet stuff often seems truly overwhelming. If you can just keep a log of what he eats for a few months it may put you on a certain road and sometimes the results are just amazing.

I kept a food diary for over a year, and had the help of a team of docs and nutrition phd's at a MAJOR university working iwth me. It was part of a migraine study and was very very interesting.

I learned that there are many foods I cannot handle, most of them not occurring in nature. There are many foods that I con only have a small serving of very 3-4 days. We make lots of our own convenience foods, and for us it is habit and easy.

But trying to make big diet changes always seems hard. Just keeping track of what he eats for a while may provide some interesting patterns, esp if you include short behavior descriptions on the page. Meltdown in pm over chore would be the note my kids logs would get.

You are doing EXTREME Parenting, where no parent wants to go!

(Should we get EXTREME parenting shirts? Just kidding,

Hugs,

Susie

 

[trinityroyal]

I like the idea of Extreme Parenting shirts.
Maybe with Warrior Mom on the back?

Trinity

 

[wolonfab]

hmmm did go to prince Alfred and difficult child almost died after the visits as it was way too restrictive at the time however may be worth another shot esp as he just did another wrist this week and has stitches...just missed the artery and so am watching him again.....
hmmm this kid has a death wish it seems sometimes

might have to call them and see what they say...he was not diagnosed with autism last time he went... wonder if that makes a difference?

cheers

 

[Marguerite]

The diagnosis of autism may make a HUGE difference. Did you see anyone in the paediatric section of the allergy unit? I'm trying to remember the name of the paediatric allergist difficult child 3 saw there, a lady doctor whose husband is also a prominent immunologist (and he may have been the one you saw before?). There is a number of very good dieticians there - the one we saw let us off a lot of the restrictions because we'd already tried them ourselves. I don't know if they'll be much help over the cutting problems, but hey - who else is helping? And you never know, especially if you ask and say, "Can someone tell me what to do, who to see and how to cope with this? I can't watch him every second," and see how they go.

They have an absolutely amazing large Brio-type train set in the waiting room, difficult child 3 loved going there just to set up the track with bridges, points etc. He would make me draw the layout design he's made. It should still be there, they made a big thing of it. It might be a carrot to get him there (but make sure it still is there when you make the appointment, if you want to use it to entice him).

And if you feel the diet they want you to try is too restrictive and he simply won't cooperate - tell them. There is no point trying a diet if you can't get the child to cooperate. Plus, you need to be sure that he is getting enough nutrition.

We were never able to complete the trial, because GHFG3's symptoms never subsided enough on the diet. But that very failure of the symptoms to ease, even under those conditions, told us a lot more about what WAS causing the trouble.

Any more news on the special autism class they offered? Or is it impractical? They DO help with transporting him there and back, if that is an issue, but for us distance itself was a problem. But then, we were offered Corrimal which is just too far away - it would take me an hour to drive there direct, in my car.

Marg