doctor appointment for cherub

[therese005us]

I had a good doctor appointment for cherub today. We talked about a lot of things, and where to start.
So, she gave her a general look over, and we slowly got round to checking for damage regarding the sexual abuse. She was very gentle with cherub, and said without a real internal, it would be hard to say whether there is any damage and as we don't want to alarm cherub (we told her we were checking on the 'nappy rash' that is out of the question at this stage.
She wants to refer her to a gastroentorologist as well as a paediatric urologist. She is doing a urine test in the meantime.
We're also being referred to a psychologist and she is making the necessary calls to put this in place. We'll see her again next week to put the Mental Health Care plan in place.
Once the urine test comes back, and we've seen a urologist we'll see where we go regarding medication.
The behaviour stuff is a whole new issue, which the psychologist will take some lead in.

At school, we have an AVT for 3 hours a week, and she'll take care of some of the toileting issues.
At the moment it's going haywire as the teacher aides have withdrawn all their help and basically just send her to the toilet on her own to clean up. Quite adisaster as was proved today when she got so messy they had to call me to pick her up. Apparently, she had excretement on the walls, herself, etc etc. Which wouldn't have happened if she'd been supervised properly. This is because the teacher aides at her school are not paid the proper allowance for cleaning up cherub! They were doing out of their goodness, till they learned some schools get extra pay or something. Makes me a little mad at their attitude.

 

[Marguerite]

Trish, I wouldn't get too mad at the aides. It is a messy job and to do it properly they need special training and whatever alalowances they're entitled to. If you must express anger, direct it to whoever decided that paying the aides what should be paid, wasn't necessary. Get upset on behalf of the aides' entitlements and you will not only get the aides back on your side (because you;'re fighting for them) but you also stand a much better chance of cherub getting the proper support and assistance she needs.

Push for funding for the extra pay as well as for training. Parents have much more success at getting funding through on appeal than staff do. Part-time aides are the lowst in the pecking order of who gets listened to in the education system.

If you need to, go to your local Federal MP and nag. It's Federal funding that pays for this; your MP is likely to need to work hand-in-hand with the Qld MP but generally they will do this even if they're opposite parties. It makes them look good when they help a kid with special needs.

Fighting for the pay rights of your child's aides is the best way to get what she needs.

Example - difficult child 3's local school was losing a teacher and a classroom because the total pupil numbers at the school had droppedbelow a certain critical point. It would have put difficult child 3 in a composite class of over 40 kids, including the bullies the school had previously protected him from. It was a recipe for disaster. All the mucking around had also meant he had had three different teachers and three different classrooms and class assignments, in less than a week. So I noisily removed him from attendance and began loud agitating. I did this while keeping the school principal informed of what I was up to, although it scared him. The school staff were unable to appeal the decisions to remove the staff & classroom; as DET employees, they had to do what they were told or face disciplinary action. But as a parent, not being paid by DET, I was a loose cannon and uncontrolled by DET.

My target - what I wanted to achieve - was to keep the teacher and keep the classroom primarily because any other option would be too detrimental to difficult child 3 and would greatly disadvantage him due to his disability. failure to meet his needs and give special consideration in this case would be directly discriminatory on the grounds of his disability, I told them.
But of course, they were all in meetings when I rang.
So this was my message left at each call - "I am ringing to strongly request that X school not lose a teacher and classroom because to do so will be to disadvantage my autistic son who will not cope as current plans are presented. I must talk to you about this urgently. I must talk to someone urgently. I am not waiting for you to return my call, I am instead telephoning the next person up the ladder and leaving the same message each time. I will keep on telephoning up the ladder all the way until I get to talk to a person. I am going as far as I can to the top on this. When I run out of DET people, I will be calling the media. If you want me to stop calling up the ladder, then get back to me as soon as you get this message and give me some good news."

End result - I got as far as state Education Minister (I had also earmarked to call the Opposition spokesperson, especially if I was going to the media). The Minister of course was not the person I really needed, but his PA. And this PA was a gem. I had also called the state head of the P&C, who also began to kick **** at Ministerial level. They had a few beefs of their own at that time, the beginning of the school year.

Outcome - I got increasingly apologetic phone calls coming in that afternoon, as rear ends across the city were getting kicked hard, from higher up the ladder back down. A meeting wascalled for me for the next morning at which time we were told that the teacher and classroom would stay "for now". I said, "Not good enough. I need a gurarantee that the teacher will not be lost for this year; difficult child 3 has had too many changes already and it has been damagingly disruptive, absolutely no consideration has been given for his needs due to his disability and I am very angry about this discrimination. We need stability, we need notice and we need to AVOID too much change. And putting an autistic difficult child in a composite class of 40 is just plain wrong."

We got what we wanted, but only for that year.

No school staff could have done tihs.

The fringe benefit - I had achieved my main aim, but along with that I lost some of the hostility form some of the staff who resented my vigilance and activism - because this time, I had won a battle which was to their direct benefit.

As I so often told the school - I am on record as being a person who can get action taken, who can get things done. I could be a school's best asset or their worst enemy. It's their choice.

I tend to push for "best asset" when I can because when the school owes you, they are more likely to be supportive of your child and give you what she needs.

I can be a manipulative cow when I need to be!

Marg

 

[therese005us]

Maybe I sounded angry (after my day) but I am not. Just frustrated. The Aides are lovely ladies, and I haven;t actually approached them regarding this. I already had inmind some kind of fighting game. Just waiting on some paperwork from the Dept of Ed Guidance Officer and I will be making those suggested phone calls.
Thanks

 

[Estherfromjerusalem]

Therese,

The best thing that you wrote is that your doctor wants to refer Cherub to a gastroenterologist. I hope it will be a pediatric gastro doctor. A Gastro is the doctor that your child MUST see if she has encopresis, whatever you think the underlying emotional reason is. The reasoning is that physical reasons for the encopresis have to be eliminated first.

Good luck with everything, both at home and at school. I've been through it with my difficult child who is now 23, but those years at school -- oh, I really don't want to remember any more, it was so awful. I really do feel for you. Hang in there, and stay in touch with us so you can vent and get support here. We are here for you.

Love, Esther

 

[Marguerite]

The reasoning is that physical reasons for the encopresis have to be eliminated first.

You also now need to deal with the funtional overlay - the physical problems which have now resulted from this ongoing, regardless of how it all got started.

Esther, I was hoping you would add your experience and wisdom to this.

Marg

 

[therese005us]

Yes, thanks Esther. We have an appointment with her usual paediatrician on Monday, and if the GP hasn't already called her, (we're seeing her again in the morning FIRST) then, I will probably take a referral or ask for one straightaway to the paediatric gastroentorologist. The paediatrician was also going to request an urgent referral to the paediatric urologist. So, hopefully, (because I do PUSH) it will happen quickly. Biomom tends to 'go with the flow' and doesn't hurry them up, which is probably why it's gone on for so long. I know that last year there was a referral to the urologist, but mom forgot or failed to attend the appointment. These appointments can take MONTHS AND MONTHS, unless you're constantly calling the clinic to see if there is a cancellation etc. Eventually, they get the message, and move you up the line to get rid of the calls!

The AVT is already on board at school, 3 hours a week, and we're hoping for more aide time as well. I intend to contact the District Guidance Officer at the week's end if I haven't heard anything about this, as I think it's important for cherub to have the aides that help with the toileting, so I need to keep on track with that, and get them to agree to the appropriate allowances etc. to make that happen.

I am being a 'quiet mouse' at the moment, but I can roar if I need to (Marg).