what have professionals done that has helped?

[BBBee]

i am a regular (narnia gate, fanjo etc. etc.) I have started a course training me as a profesioinal working with children with sn and their parents.

Could you tell me what helped and didn;t so i can become better and more informed when i work with childrfen and parents?

thanks.

exercises we can do with her have helped.

OT and SALT.

just stuff we can work with DD1 on.

she has dyspraxia and has experienced gross and fine motor skills all her life.

she's nearly 5 now.

particularly OT stuff as now she is about to enter school we are working with her on pencil grip - she has no 'handedness' and will even switch hands in the middle of a task and other things.

I really appreciate people who try and work with me - rather than ask me what I think and then do what they think instead.

It's important that parents feel listened to - personally I am far more willing to co-operate with someone who has taken on board my views, even if they then point out I'm wrong!.
Try and keep things positive - it's all too hard to get into negative spirals (sorry inner-hippy takes over at midnight!) But I know you kind of have to make things look grim to get things like statements/Dla blah blah but there is a difference between outlining problem areas and listing negatives.
Plus, how children act in an assesment situation is often not how they normally act and is v. stressful for parent and child.
Not sure if this is at all what you are looking for - going on hols tommorrow and kinda got in the spirit a bit early!

Sorry - started going off on tangents. What I mean is that what has helped for me has been Ds1's school working with me to overcome problems and even when behavioural issues have come up it hasn't been awful because I know we can tackle it together and they aren't just going to focus on the bad stuff.(negative spirals - tee hee).

The best person I have worked with was a neuropsychologist. The best thing about her was her amazing knowledge as she worked not only with children but with teenagers and adults. Her patients had all types of neurological conditions.

But what I really REALLY liked about her was that:

1- She was always honest about her opinion on DS's progress, if DS was improving she would say so, but he was NOT doing well, she kindly but firmly let me know what she thought. And sent me "homework". I hate those really patronising therapist that say, "oh but he is doing so well he can do this and that".

2- She always told me that 45 minutes with her every week was not going to do any difference, I had to do the exercises three times a day if I wanted results. (Other people have told me to just enjoy DS and be his mum, but I know he wouldn't have improved if she wouldn't have given me this advice).

3- She put 100% of her attention to those 45 minutes with DS. In fact she didn't even look at me during the session, we just had a conversation at the end about things. She had the patience of an angel. She made me feel like DS was her only patient and he was all that mattered during those 45 minutes. I have had therapist that spend too much time talking to me during the session rather than concentrating on DS and it really pisses me off.

I am sure there is plenty more, but those three stand out for me. I truly value this person's help, I will be forever grateful to her, it is a shame she doesn't live in this country.

Agree with TinySocks. People who tell you kindly but firmly when you have to sort something out (such as the SALT who told me to get ds1 out of mainstream).

Recognising that every child is different, so seeing the child not the diagnosis.

Pros who act as if they like ds1 - that helps!

Also realising that there's more going on in there- especially when compared to what a stranger is likely to see. So people who believe me when I tell them ds1 can do something surprising and don't take it as a sign that I've lost my marbles.

Pros with whom you can have a dialogue- ds1 has just started work with an OT. He knows a lot about autism, I also know a lot about autism- we swap ideas and share the things we know. He's not threatened by my knowledge and he understands I want to learn what I can from him.

yes, as others have said, honesty and rapport with/attention on your child. I think make it clear that although you may appear to be focussing on the negatives, it's because you need to work on areas the child has weaknesses in.

otherwise:- if a service is inadequate due to lack of funding, then don't try and defend the indefensible.

I like honesty. J's CAMHS psych consultant has spent a year gently but firmly slapping down my hopes that he'll somehow grow out of autism if we do enough 'stuff' to help him. And I needed that, because my instinct is to try to problem-solve, and I needed to be told that this isn't going to help here.

I also like empathy. The same psych is always v patient when I get upset and it does help to not be sneered at. She really supports me, as well as J, in things like DLA applications and coming to meetings at school. She's the best professional that I've worked with about J - and I've worked with a lot. She doesn't seem to have another agenda - she just gets it. She is never patronising (and most people who work with J can be at times).

It also helps that she really sees the positive side of J and makes a real effort to interact with him (though doesn't get much back). She's v patient with his obsessive little ways, even when it means that our appointments take far longer than they should do. She never makes me feel like we're taking up too much time - she will always call back if I ring when we're having a major problem, and nothing seems too much trouble.

She is GREAT - can you tell and I am so glad that J has her because the previous psych who was supposed to be an autism expert completely missed the autism and dx'd ADHD. This new psych noticed the autism from her first meeting with J last summer and then pushed to ensure that the dx process was quick, open and problem-free. And that dx has opened so many things up to J, so, though I wish he wasn't autistic, I'm glad he got the dx (if that makes sense).

the people who have helped me the most are the ones who put my DSs needs first and foremost. MAny professionals who we have dealt with appear to have other agendas (finance/time etc) the ones who have been fab are the ones who have put themselves out for DS, been evry honest about what DS needs and actually taken the time to express their hoinest opiniions and views despite the fact that it may make them look like they have failed IYSWIM.

I'm not sure what kind of children you'll be working with and in what capacity but these are things that I like 'my' professionals to know:

1. DD is a person and not simply a collection of symptoms/delayed milestones;
2. I am the expert on day to day care for DD and should be treated appropriately, empathically and with respect, ie not in any circumstances underestimated or patronised as 'mum'; at the same time professionals should be aware that appointments can have an emotional impact and parents may not always take in info delivered, hence need for prompt report provision, see below;
3. If they haven't had time to read relevant information about DD before the appointment, say so and ask me what would be best to read, rather than waffling;
4. If they don't know/can't help, say so!
5. Keep promises about follow-up appointments and (especially) reports--because in a lot of cases children with SN work with various professionals in various hospitals, who don't appear to know how to talk to each other or how to use email. So reports, carried by parents, become the only way that professional (a) at X hospital can understand what professional (b) at Y child development centre is doing.

I could go on....

like what she said!
but on 3 - read the reports that other professionals have sent you so that you aware of all current professional viewpoints of dc - there is nothing worse than waiting six months for an appointment for it to be immediately apparent that you haven't read anything and have no idea why dc is there. reports are sent out for a reason.
and on that note 5 - try to keep abreast of all professionals working with dc and family - not in a nosy way, but so that you are aware of all areas of concern
but mostly
listen
and respond appropriately...

this would be easier if we knew what course you were doing...

The best professionals are those who:

• understand that nobody knows a child as well as that child's parent
• listen to, and remember what, the

parent tells them

• do not suggest strategies and techniques that will (a) not work for the child in question and (b) will make the parent feel bad for not wanting to try them because of (a)
• can appreciate the difference between working with a SN child and living with a SN child
• offer to be contactable if you have any questions

I think it depends on the parent a lot. One thing that I have realised since becoming governor at our SN school is the approach that I desparately need as a parent (tell it straight, give me every little piece of info so I can do what I can) is not what some others need (keep it positive, don't want to know about progress if there isn't any, want to feel you are the responsible expert, not me) So I guess some of us would get on with different practitioners - but a "holy grail" practitioner would be one that first listens for long enough to find out what the parent wants, and then delivers it.

Other thoughts

• a mostly medical issue, but 95% of our appointments are routine check-ups where I spend an hour enriching the practitioner's knowledge and go away empty-handed. Yeah, sure you can't do much for DD1. But try. Any news about research, people to contact, something we haven't tried yet ... just something that makes me feel I haven't pissed another n hours of my life and DD1's away trawling across the country and back for no reason at all.
• at least consider the possibility the parent knows something. Possibly more than you in some instances. I've kept score self versus Medical Profession where we've disagreed re: diagnoses, action to take. Currently running at Mummy 13, Medical Profession 4. And school last year wasted a year of DD1's time investigating something that I told them wasn't developmental ... to belatedly conclude it wasn't developmental and adopt the strategy I asked for a year previously.
• feedback - God Yes. Write your fecking reports and post them. And if an admin person does that, get on their backs.
• also agree about defending the indefensible or criticising a parent for fighting for funds/treatment/schooling for their child as if that is a "selfish" act. It's good to sound a note of realism about their chances and how the whole budget fiasco works, but any pressure applied to you by parents should be communicated up the chain by you to your managers - if everyone did this, it would eventually translate to a deafening demand to government for better funding. Reflecting it back to the parents in a "jobsworth" fashion "oooh no, we don't ever fund that sort of treatment" is just asking for budget cuts.
• make time, where appropriate. DD1's consultant doesn't block out time in his schedule for "emergency" clinic appointments. In an emergency we see him at 6pm on the children's ward or in his lunch hour or by pushing back a lecture session by 10 minutes. He always makes a way but will only do this for genuine emergencies so I don't get the impression he's working more stupid hours than anyone else.

Oh, there's loads more. Give us a clue and we might manage to post something appropriate!

I love my DD's paediatrician who we have known since the day she was born and its mainly because I feel she really cares about DD and always seems so pleased to see her. This means she has a good relationship with her and is now the best person to get blood out of DD as she is not scared of her.

I prefer that it is acknoledged that I will have a deeper understanding of DD's condition in cases such as a and e when the doctor is not overly familiar with it. A doctor in that situation recently asked what we would normally do and admitted that she didn't know much about the condition but was following procedure etc, I liked that much more than people pretending.

I had a health visitor when DD was tiny who was so good at her job. DD had recently been in hospital and I was very shaken as I was very much still learning all the medical stuff she needs and very anxious but I hate to cry in front of anyone so was trying to put a brave face on. The HV said she could see that my anxiety levels were through the roof and undrstandably so and did I think it would be a good idea for me to meet her on our own one morning so we could go over how to do DD's injection and practise on oranges (!). I thoght that was such a tactful way of seeing me again and helping me to stay in control because she was obviously aware that I didn't want to cry in public or open up my heart to her but was in need of support.