Here are some suggested organisations that offer expert advice on SN.
I wanna rebel!(21 Posts)
I wanna rebel and refuse to attend ANY more meetings with ANY more "professionals" until my son gets the active theraputic input I've been screaming for over the last 3 years. Where do all these "helpful pros" come from btw- surely the list must have an end sometime?"
I do not want to repeat his early milestones, why his Dad & I split up, what his daily routine is yada yada etc, etc ever again. It's really irritating and I'm fed up with "proving " to each individual yet again that my son's behavioral issues are an intrinsic part of how he's wired as opposed to some simple basic parental failing on my part that can be spotted by a particular pro that the legion who came before must have missed. How much do all these people cost as opposed to genuine appropriate targetted intervention?
Pontius Pilate had no idea what a trend he started!
They conclude he has "complex needs" and refer him to yet another "do nought" professional before the whole cycle starts again.
The final straw today has been the non-disability specialist social worker I didn't ask for saying she doesn't understand DS's "diagnosis", after interrogating some random Cahms person who hasn't met my son or myself. I really resent someone with NO specific disability training talking to someone I've never met about my son's medical records and then asking ME why I'm on a self sourced and funded asd parenting course instead of being available for her to visit and nose some more in my business at home later this week.
It's not the individual SW's fault - it's a definate case of one pointless meeting request too many, but I've had ENOUGH! I have a child to raise & our life really isn't that interesting.
At what point are you allowed to say "fook off and come back when & IF you are actually in a position to stop wasting my time and DO something practical to help".
You are allowed to say it now, but think hard about what you might be giving away.
So little of what is on offer helps. I ask every person we see what they think they can do to help....very few of them can answer even a "What is the meeting going to be about?" questions let alone anything more to the point.
What an annoying woman....before Christmas I was given advice on how to make carrot sticks, had someone suggest a parenting course [always as you know an excellent cure for a language disorder], and a head teacher tell me that legally my child had to be in school [errrr I think she gets education otherwise now...though who knows], oh and also that not all schools would take a child who was not potty trained .
The world is full of idiots, seriously weigh up what these people are actually giving to the situation. Keep firm in your mind that you do not have to answer their questions and that you are allowed to ask your own and have them answered. I had one joyous moment where I asked a room full of bullies if they were really going to let the fact my child couldn't toilet independently stop him from accessing education, and smiling slightly as I told them they too would most likely be incontinent in old age so I was sure they would empathise with him.
Chin up, they no not what they do.
I totally agree with you bochead. Iv'e had 10 year of similar crap and thrown the towel in so many times but at the end of the day who else will fight for your dc. It's hard I know, try and turn off for a while in your mind, you will find the strength.
I know its hard but try to be a bit more assertive with them - I used to book" a week out every now and then (put big lines through your diary or calendar if the professional is likely to see it) and say we were not available that week. If need be I'd lie and say we were away or had an appointment elsewhere without being more specific.
I also used to dread the taking of a "history" with the same intrusive questions time and time again. I would say calmly that I was sure they would find it in his notes and perhaps they would like to ask specific questions about it rather than asking me to tell them (again) everything that had happened since conception! Of course they hadn't actually bothered to read the notes beforehand....... I would also ask them to explain the relevance of various questions rather than just answering - and whether I did answer would depend on their response.
I can only agree with the posts above about the ineffective nature of meeting after meeting that achieves nothing and the lack of real help, processes seem to inhibit people from actually thinking about a child in their situation and what that child and their family needs.
Its a really hard road us parents are forced to travel wearlily down and i know where your comming from the countless pro's who think they know best but dont know anything at all all well meaning of course then there is the lets blame the parents brigade i used to get asked to repeat my son/ our family story to each and every one of them (cant they read the notes before they visit or meet us?) and then i would remind them ive two ther older NT DCs and ive done nothing different so how can it be somethinng ive done or said thats stupid asking how my DH and were still together he was iin the forces what has that to do with dc he hadnt been born then hes our 3rd OHHHHH you must be soft on him spoil him lots then ahhhh that explains it no like you say bochead hes wired different he is just pklaiin different all the usual things dont work for him we HAVE to do things differently for DC i gave up after years of struggle then re took the reighns and started again with new vigor and now a bloody attitude refusing to be pushed and poked and humiliated any more as usually im the softest wettest burke your likely to meet scared of myself me wouldnt say BOO to a goose then i thought F* it they are not hurting my family and my DC anymore oooh im now for you so if your now at that point maybe you do need to re juvenate and change tack and decide "IM in control" cos the worst aspect other than seeing our DCs suffer is also the feeling of being powerless isnt it COMMON BOCH you can do it (((hugs)))
Many of us have been there. It's so hard.
My son was dx aged 4. He's ten now. I have found that the "fight" and justifying my every request didn't stop at dx. That was just the beginning. Yes, there were times I wanted to say "bugger this" but really, I had to just carry on.
My tactic was "go softly, and carry a big stick". I knew my ds better than anyone. I researched and kept diaries and wrote often to his nursery/school for their support. I went to tribubunals and just kept plugging away. I never lost my temper (though I actually felt like punching one particular professional) and never banged on desks.
But, it WAS horrendously stressful and frustrating. If hadn't carried on, who would have, on my son's behalf?
You have go carry on bochead. (hug)
I remember applying for a Blue Badge for my ds. I filled in the forms and sent copies of the various parking tickets I'd accumulated over time. I got a letter from his ds's behavioural psychologist and took info from the NAS. I sent the forms in on a Tuesday. Phoned on the Thursday to see had they received them. Was told by a rather officious woman that because my son was fully mobile, it was unlikely that he would qualify. She told me I'd need to see their doctor who, as it happened was there that very afternoon. And then, not there for 6 weeks due to holidays and workload etc. I said, I would be happy to speak to him. Today. On the phone, please. We spoke. For nearly an hour (clearly, he wasn't THAT busy). On Saturday morning, my ds's Blue Badge arrived.
Unheard of apparently. It has made a huge difference to our lives. And my bank balance (parking tickets).
I sympathise Bochead big time! I am only 12months into this world of meetings and am also sick to the teeth of repeating myself over and over and then going home frustrated and thinking its your fault even though it isnt. I have told myself the next time I go I am going to say ........."I tell you what I will answer a question of yours if you answer one of mine directly after and so forth. If I dont receive a satisfied answer that I am seeking then I will know you cant help my son and the meeting will be over and I will stop answering your questions and ask you to direct me to someone who can actually help.............
I always ask for an email address and then send the so called professional a brief description of my child, background, dx etc and explain the reason for this is so the meeting will be productive for my child and not wasted on too many introductions. I also ask for a quick description of what the meeting will involve so I can be prepared and be able to ask the right questions explaining that it is very difficult with so many appointments (the reply also proves she/he has recieved the original email). It sounds very grovelling but it puts me in a strong position.
I did this Utah. Still do. That way, the precious meeting doesn't get frittered away in same old same old crap. We can, and do, get down to it straight away. Sometimes, I would just type a letter and explain that I wanted it handed in BEFORE I ENTERED THE ROOM to achieve the same end.
Was told by someone at my son's new school today that he doesn't need SALT cos he doesn't have a diagnosis. When I asked who she was cos I thought "X" who did his diagnosis was in charge of salt at the school.
she then pomposly told me she was in charge of salt delivery in the school. I smiled sweetly and said I hoped she would be there at Friday's meeting with the lea officer to explain why I'm going to tribunal in large part (not true but I was cross!) due to DS's salt provision as set out in his statement not being provided. She looked shocked, & said she'd read his statement today, I smiled sweetly and strutted off - away from the ds in melt down mode being restrained by 3 men straight to the GP's.
Luckily I saw one of the GP's who is a parent themself who let me rant for five mins and agreed to my "request" that DS be sent for a secondary diagnositic opinion at GOSH. So my rebellion did have some small glimmer of positivity at the end of it, as I've been too nervous to go ask for a 2nd diagnositic opinion before but red hot rage it seems gives me courage!
Thank you so much for your words of advice and support - I wonder sometimes if these people set out to make you feel isolated, powerless and at their mercy. If I feel that way sometimes, how much more so a little child? I shall lift my chin and start asking my own questions and expecting reasonable answers after 3 years of trying to access appropriate help then I shall be unavailable to ijeets for the month of August to give myself a break from foolishness before I catch it too.
Well done you! Great news on the referal I am so glad the doc backed you up!
Am oscillating between
roundy roundy arms and "go bochead, go bochead" chant with sexy wiggle [bare in mind I am a mother of 5 so this is all int he minds eye or the ripple effect in my stomach will kill a small child].
and [to the tune ??? of I'm to sexy for my shirt] "I'm too shitty for my SALT, to shitty for my SALT so stroppy it...... works"
Well done use that rage girl.
Now overcome with my Rikki Lake moment I must read 5 bedtime stories [pray not Topsy and Tim again....].
Well done for putting the frustration to good use! And good on the GP for backing you up and getting something useful done for your DS.
The school "Salt" (actually think she may be one of the TA's?) woman got me SO angry cos all this was said in the playground in full public earshot of any other Mums dropping off their kids. Call me old fashioned but when I did teacher training referring to any pupils medical stuff in public like that was considered seriously unprofessional and plain rude.
How DARE anyone be misrepresenting personal medical details about my son in public without even giving me their name and proper job title. She does it again I'll impersonate a VD nurse and ask how her sores are healing ; ) As it stands I'll catch her tomorrow in private and inform her of the rules on confidentiality in relation to safeguarding children uber politely.
Hopefully my response today wasn't too Vicky Pollard but we were in the playground ; )
BOCHEAD.....my dumb iPad doesn't like you're name (above)
I am also frustrated at repeating DS history, quirks, difficulties at every different appointment especially when DS is present.
At the last appointment with a different paed DS said "why are you telling her my weaknessess?"
I flatly refuse to do this. Like Utah, I write it down and insist they read it before I go in the room. it's damaging to my ds to talk endlessly about his difficulties in front of him. Also, don't they have the previous notes from whoever refers the child, in the first place. Speak out......
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