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Here are some suggested organisations that offer expert advice on SN.

whoa! professionals are people too!

(81 Posts)
mogwai Tue 01-Mar-05 23:12:40

I've recently subscribed to this website and so far I think it's great. But...bear with me, this post will probably be unpopular - I really need to let off some steam about some of the things I've read here!

I'm dismayed to read how often professionals and their opinions are "dissed" on these boards. I have no doubt that some of you might have had negative experiences, I mean, we are only human and we all have bad days, and yes, some professionals are patronising. But the vast majority of us are trying to do a good job with limited resources.

As an SLT I feel that the parents know their child better than I do. The parent's opinion is invaluable to me in my assessment and I am always ready to accept that what a parent is saying is true, even when it might contradict what I have observed myself. In general, I think all my colleagues feel the same way.

But, being an SLT can be very challenging when trying to work with some parents. I find one of my greatest problems is that communication skills are so difficult to explain in a way that makes sense to everyone. People generally think they know about speech and language, but the reality is often much more complicated than they realise (just as a physio's job is more complicated than I realise). It took me four years to train and many more years to gain my experience, and my decisions and opinions are based on that knowledge and experience.

Some parents, consumed with worry and anxiety (understandably) come to professionals with an attitude of "I want you to fix this and I want you to fix it now". I have read many responses to threads on these boards advising other members to demand immediate therapy (usually from the same people who advocate trying to push your child up the waiting list through lying and complaining without thought for the people who have been waiting longer and deserve to be seen first). My knowledge and experience tells me that "immediate therapy" is not usually the answer. Parents usually expect the therapist to work with their child individually, even when this isn't the best way for us to help. Good therapeutic intervention is based on the right sort of help at the right time, and I get very tired of hearing parents demand "immediate individual therapy" when, honestly, they are not qualified to make the decision that this is what their child needs. I cannot understand why parents take their children to see an SLT if they are not prepared to accept the SLT's clinical opinion of what sort of help their child needs. When parents disagree with your diagnosis, they may have reason to do so, but I don't understand how a parent can disagree with the SLT's opinion of the best sort of treatment to offer, particularly when they don't know what the range of treatments are or the rationale behind them might be.

Finally, I hear a lot of complaints about therapists from any profession who leave their post or go on maternity leave. I am about to take six months maternity leave and the trust I work for cannot find a suitably qualified therapist to cover for me. This really isn't my problem, but it does mean that the weeks leading up to the birth of my child will be extra stressful as anxious parents are already expecting me to be working at double capacity to ensure their child gets as much out of me before I go on leave. I feel like a sponge being wrung dry of every drop of energy. Can you believe I received a direct "complaint" from one parent, via her paediatrician, because my going on maternity leave is "inconvenient" for her and "detrimental" to her son's therapy.

I entered this profession because I wanted to help children with special needs. I do this to the best of my ability, lord knows, I don't do it for the pay. Professionals have every right to change jobs (believe it or not I know many professionals who have changed jobs to get away from particular parents who were making their lives hell) and we have every right to take maternity leave, as like the parents we work with, we also want the chance to be parents ourselves.

I would like to think that the people we work with could see us in this light rather than viewing us as individuals placed on this earth with the sole purpose of helping their child, never allowed to change jobs or have our own children. To be honest, these opinions make me wonder why I will be putting my own baby into a day nursery so that I can go and help other people's children come next January. Perhaps I should stay home for good!!

Ok rant over. I feel better now. My honest advice to all those of you working with SLTs or other professionals is that if you are reasonable and nice, you'll get it back in bucketloads. It's not always easy to be reasonable and nice when you feel worried, but please, think for a minute about the people who have been waiting even longer than you and about who that therapist might be when they switch off the lights and go home in the evening. You can foster a much more productive relationship and get the very best care for your child if you are prepared to meet us halfway and with an open mind.

eidsvold Wed 02-Mar-05 02:23:36

In having dealt with professionals on both sides of the world...(medical staff and therapists) uk and australia and being a teacher and working with parents of challenging children - I can appreciate where you are coming from

HOWEVER one statement you made is the crux of the matter for me....

'As an SLT I feel that the parents know their child better than I do.'

I am a reasonable intelligent human being who spends all day with her children... whilst you may know your SALT i know my child and what angers me is the implications that I don't know what I am talking about when I point to something being amiss with my child. Given that I spend all day with them surely I would realise if something is not right.

WHat I expect is to be listened to - all my concerns and questions and to be spoken to with respect - not talked down to or spoken over as if I do not know what I am talking about..... I usually do my research and ask questions as I want what is best for my child......

Perhaps what is missing for some parents it the knowledge of the range of treatments available and the rationale behind your choices - that is where explaining it in an appropriate manner can make all the difference.

As we remember you are human too - put yourself in our shoes - parents who may be struggling to come to terms with the fact that their child has special needs - parents who some days don't have the strength to go on - but do, parents who have very stressful lives and who are dealing with lots of specialists and issues and appointments whilst trying to retain some semblence of normality for other children in the family and themselves. For some parents and children stability is important - so having SLT changing all the time can cause great upset - perhaps that is why parents are dismayed to learn staff may be leaving etc.... It can seem to the parent that all the good work that has been done with their child can be undone with the changing of therapy staff....

those anxious parents could be like me - I could not get SLT for my daughter in the UK for a number of reasons, ot and physio were just playing in a group with other children for an hour once a month.... came to Australia and she now has one on one sessions of OT, physio and SLT - the growth spurt in her development is amazing. My physio has had to take leave due to family illness etc and it has been hard as I have seen my daughter on the verge of so much and desperately wanted to help her. I had to search out the name of a paed. physio and look at costs - we can't really afford to pay out for therapy.... BUT we are lucky our physio is back and dd1 starts physio again next week. I was very anxious and worried that dd1 would not progress without that input having seen how much she did with the few weeks she had prior to the physio's leave. That is probably how your parents are feeling.

And at the end of the day - when you turn the lights out and go home - to your family - we still have our children and all our worries and concerns and our life goes on - it lasts longer than a therapy session. We are dealing with this 24/7 and we need help...... we rely on the professionals to help us - not to hinder or harm our children.

I was one who moaned about a professional but you know - if she knew the whole story before commenting on either of my children - she may have been able to approach me in a more appropriate manner......

You know - selfish as it is - I want the best for my child and what is needed. What I don't expect to do is to fight like a seagull over a soggy chip with other parents in order for ALL our needs to be met.

eidsvold Wed 02-Mar-05 02:24:32

wow did not realise it would turn into a rave - jsut wanted to share my thoughts.

eidsvold Wed 02-Mar-05 02:25:21

unfortunately 'good' professionals are hard to find and we parents love to hang on to the ones we have.

i'll shut up now....

MeerkatsUnite Wed 02-Mar-05 08:06:43

It took quite a long time to get the professionals to listen to us and our concerns which turned out to be justified. I am lucky in some ways in that DS has been monitored and helped since two. I would certainly agree with all the sentiments written in Eidsvoid's posting.

The kindest thing any professional person (private based paediatrician) said to me was the comment made when DS was diagnosed with developmental delay - "it is not your fault that this has happened". Many of the NHS people I have come across do try very hard under difficult circumstances and I have every praise for them, they have helped with good practical support. There have been some though whose communicative skills come across as patronising.

There is often more than one therapist to see and therefore more than one set of appointments to be kept. DS is an only child so I can keep track of things quite easily on the calendar (I still sigh a bit when I see any letter saying to Parent/Guardian) but other families with one or more children who have to do all this and more besides as well have my full admiration.

It doesn't help any when you are told you've got to wait eighteen months (for instance) to see an OT due to "lack of resources". Not everyone has the money to keep going private. I am both reasonable and nice when dealing with these people but changes of staff (primarily them moving to other positions within the NHS; not your particular circumstance) can become frustrating because you feel like you have a start explaining all over again. A lack of continuity of care doesn't help. Also when the child hits 5 you have to deal with school and issues pertaining to that if child needs extra help. You may have to deal with your LEA as well.

Sites like this are helpful; not everyone has heard of IPSEA for instance or heard about all the support groups in their area.

I wish you well with your maternity leave.

It doesn't surprise me in the least that families can break up under the strain.

MeerkatsUnite Wed 02-Mar-05 08:06:43

It took quite a long time to get the professionals to listen to us and our concerns which turned out to be justified. I am lucky in some ways in that DS has been monitored and helped since two. I would certainly agree with all the sentiments written in Eidsvoid's posting.

The kindest thing any professional person (private based paediatrician) said to me was the comment made when DS was diagnosed with developmental delay - "it is not your fault that this has happened". Many of the NHS people I have come across do try very hard under difficult circumstances and I have every praise for them, they have helped with good practical support. There have been some though whose communicative skills come across as patronising.

There is often more than one therapist to see and therefore more than one set of appointments to be kept. DS is an only child so I can keep track of things quite easily on the calendar (I still sigh a bit when I see any letter saying to Parent/Guardian) but other families with one or more children who have to do all this and more besides as well have my full admiration.

It doesn't help any when you are told you've got to wait eighteen months (for instance) to see an OT due to "lack of resources". Not everyone has the money to keep going private. I am both reasonable and nice when dealing with these people but changes of staff (primarily them moving to other positions within the NHS; not your particular circumstance) can become frustrating because you feel like you have a start explaining all over again. A lack of continuity of care doesn't help. Also when the child hits 5 you have to deal with school and issues pertaining to that if child needs extra help. You may have to deal with your LEA as well.

Sites like this are helpful; not everyone has heard of IPSEA for instance or heard about all the support groups in their area.

I wish you well with your maternity leave.

It doesn't surprise me in the least that families can break up under the strain.

mfh Wed 02-Mar-05 08:19:14

Mogwai, I found your contribution very useful, and I hope you will stay on the site. One of the good things about Mumsnet is that professionals often post from their perspective - I can think of several teachers - which is very helpful.
I think most of us would say professionals are individuals, with individual strengths and failings. We are all working inside the restraints of the system, normally resources.
One of the most appropriate things said to me by a professional was that "we are all working together to help your son achieve his potential". In her case, that was very true.

Keane Wed 02-Mar-05 08:31:36

mogwai very brave first post

Just wanted to echo what eidsvold and meerkatsunite have posted. My dd was diagnosed with global development delay/microcephaly when she was approx 18 months old. I was heavily pregnant at the time and the whole period was very difficult. I was told by various professionals that my daughter would "never walk" "had Retts syndrome" "had regressed". None of that was true. Yes I wanted to scream and shout at them. I needed help and none was offered. I knew no-one had a magic wand and she was going to instantly get better, although I did fool myself that maybe she would. The services were rubbish and we saw a SALT maybe 3 times between the ages of 18 months and 3 yrs. She saw a physio, maybe 6 times in that period and OT NEVER! Portage was a lifesaver as it was weekly and we really enjoyed the sessions, and dd got along great with them.

I decided when she was 3 to send her to special school as I was so frustrated with the lack of services. Luckily in Staffordshire, they take SN children from 2 yrs of age. Something I was unaware didnt happen everywhere Infact when i moved to Kent, i was totally dismayed at the lack of pre-school services.

Luckily she has now started special school and has an outreach place at a mainstream. i can not tell you how happy I am with the standard of care she receives and the specialist input that is provided. i feel she is getting the best intervention possible and I dont worry anymore. I like her porfessionals and have no moans about it all. I think that is where there is a difference. If you are screaming and shouting and no-one will help, it is bloody hard. If your child gets everything they need from professional services, you have nothing to moan about.

I have met good and bad professionals tbh

Also i think a good service to be provided could be counselling for the parents. It is never suggested that you as parents are in shock and are finding things hard to cope with, it is just assumed you get on with it. I am not suprised alot of families split up under the pressure either

mogwai Wed 02-Mar-05 08:39:51

Exactly mfh

I agree that the waiting lists are awful, it would not be my choice to place any child on a waiting list of eighteen months. It's really frustrating for the professional too, but the best thing you can do in this situation is to complain to the health service about lack of provision. That way perhaps they will fund more posts. We can complain all we like - it has to come from elsewhere, and I can think of many instances when this has been successful.

In response to other points made - eidsvold, I was agreeing that parents know their child best. This statement wasn't meant to anger you, I was pointing out that I agree that your concerns need to be listened to very carefully. I always begin my casenotes with the heading "Parent's perspective".

We can't do much about the fact that healthcare may be more plentiful in other countries. I once had a parent complain that our provision wasn't as good as she'd had in Saudi Arabia. All I could do was nod my head. What other response can we possibly give? We are pretty powerless but try to give what help we can, nevertheless.

I understand it's tiresome having to repeat yourself to a new professional. Actually that person should have your child's casenotes from the previous therapist and this should give her most of the information she needs about what has previously been discussed. In our district, we have a careplan specifically designed to avoid repeating questions to a parent from professional to professional, it's shared with other therapy sevices and teachers so you don't get asked twice.

Yes, I know you we can go home and switch off the light at the end of the day, I know you have to live with your anxiety all the time. I'm not sure what to say about that. It's well covered in SLT training, most SLTs have highly developed empathy skills. I often drive away from a home visit wondering how that mother or father copes with those problems on a 24/7 basis, it's not like I think "ho hum, what shall I have for tea tonight?". At the end of the day, you simply could not do a job where you are faced with such parental anxiety if you could not switch off. There's nothing I can do for my patients and their parents at that point other than to understand that life can be crap and that unfair things happen to good people and that it's scary.

I dunno ladies, I think all this just confirms I ought to give up work and stay home with my own children. If our very best cannot be good enough, where can we derive any job satisfaction? It's also hard to think about spending the next 30 years in a job if that's really the perception of the people you are trying to help

Keane Wed 02-Mar-05 09:00:20

Is this your first baby mogwai? Just wondering whether you are unsure whether to give up work or not?

As for people moaning about you not doing your job properly. Think that happens with all jobs. I am sure it is not easy for you, as a resource to be stretched and complained to. But alot of people do appreciate your services. As I said I like the SALT, physio, OT etc at my daughters school. have certainly found SLT's etc to be provided for more regular by the education service rather than the health service.

Dont forget we need to come someone to vent. Of course there are two sides to every story. But if we didnt get it off our chest, either here or elsewhere, we would go mad !

SleepyJess Wed 02-Mar-05 09:10:23

mogwai .. I would like to reiterate something in particular which eidsvold said in that this 'parenting of an SN child' is our whole life... not our job.. and not something we can change. The situation is there when we wake in the morning.. it's there when we go to sleep at night.. and in many cases (like mine), the 'sitaution' doesn't even stop at night.. (hence sleepy Jess!)It is our whole life.. and although my son is literally one of the brightest lightsof my life and I love him to bits, being his mum is a challenge I never imagine I would have to face. And not something I ever thought I could do.. but that's irrelent... I have to. So, what I'm trying to say is the, re the professionals in our lives, we rely on them so much - especially in the early years - probably ore than we should.. because we're floundering and they are the only thing we have to cling to. And whilst we cling, we are going through some of the hardest times we have had to face, so even if we are lucky enough to have the best experiences possible with our physios.. our SLTs, our OTs etc etc.. we are are often not able to be the people we would normally be due to the extreme stress we are under.. especially in the light of a new diagnsosis, or sometimes, the agony of nodiagnosis.. just the realisation that the child you thought you would have, you don't have.. and he/she will never be that child. It's a type of bereavement.. I realise that now looking back.. and this can last years. Just as we wouldn't expect a grieving family member of someone who has died to be behaving normally/rationally etc, I don't think parents of SN children can be expected to either. And we get no training for this.. we just have to teach ourselves to cope the best way we can.

Having said that, that is no excuse for prolonged negative hegaviour towards professionals, who are, at the end of the day, trying to help us..and have gone into that profession in order to do so. I have had some fantastic expereinces with professionals. Ds's first physio was our 'rock'.. and we really did cling to her! She was the first person to agree with us that there was a 'problem' and then get us 'in the system' and we felt very reliant on her for a long time. Luckily, she was up to this.. which many aren't, and to be honest it is not in their job descriptions I'm sure to be nursing parents through their stress, grief, and shock. But nevertheless, there we are, stressed, grieivng and shocked about the situations we are in and cannot get out of.

I think that the vast majority of professionals do a wonderful job.. and without them, we would surely be up the creek without a paddle! But when we come against a frustrating problem connected with out SN children, we do need to vent about it because we live to do the best for our children and help them reach their potential, however lowly that potential may be. In fact, our goals are the same as yours as a professional.. but for us, the stakes are so much higher. And if we need to vent, we are very very lucky to have places like this to do it in. Sometimes, just the act of venting makes us feel better and more able to cope.. and that's without the invaluable advice we may get from other parents..and sometimes, professioals who stop by. (And I have to say, advice from other parents with SN children has been a MAJOR part of my way of coping.. and the internet has been my main access to this.)

I know you must feel frustrated, if not a bit 'wronged' by some of the posts on here somwtimes.. but not everybody in your postion would look beyond the child and the challenges their problems are presenting and see the family struggling to cope. Some may be wonderful at the 'therapy' (eg) part of their jobs.. and less so at the 'people' aspect.. it's the same with any job I guess. But because we rely on you all so much, and we are so stressed.. this is why we so often feel let down when our 'rock' which are clinging to doesn't take our weight.. we sink for a while so to speak! And have to find a way of carrying on, dealing with our emotions. disappointments etc whilst still being the best parents we can.

Will shut up now. Hope what I'm trying to say has come across ok.

SJ x

eidsvold Wed 02-Mar-05 09:16:03

I am not angry mogwai - I just wanted to put across a different perspective - which some people ( not saying you) can't seem to appreciate. It is a shame to lose a good therapist.... but again you have to decide what is best for you and your family.

Like anything - you have good and bad therapists and it is the bad that give the rest a bad name....

as others have said - you are very brave and we need people like that who can help us understand different things and perspectives.

what I found frustrating in the Uk was not that I knew I could get better or more appropriate resources here in AUstralia BUT that someone who lived not far from me had acess to far more resources than I did - here child also had down syndrome. That can be very frustrating for parents.

Jimjams Wed 02-Mar-05 09:18:40

If professionals deserve respect they get it from me. Some have been invaluable and I have praised them on here.

Re maternity leave. My son's SALT went on maternity leave last year for 8 months. Now he is non verbal and at the time was in a mainstream school (joke yeah I know)- He had SALt specified in parts 2 and 3 of the statement - which meant that he should have received SALT. I was told that there was no-one. In his case he did eventually after waiting 8 months g the LEA paid for his private SALT to go in. I took this up with the health authority and the LEA (their responsibility) and have always been pleasant to his NHS SALT (nice woman, does her best, is drowning - now she's back 3 days a week and expected to do the same amount of work as before- I feel for her). She did her bit and put my son at the top of the list as the child most in need of SALT in the city- privately she is happy to say exactly what she thinks of the situation and I followed her request too try and improve it. TBH I find it offensive that you woould assume that me complaining about my son not receiving SALT is the same as me assuming the SALT shouldn't go on maternity leave. Of course she has every right to maternity leave, she also had every right not to come back, and whenever we chatted the first thing I asked her about was her dd.

HOwever not alll SALTS have been as good. DS1's first therapist down here was truly awful; dreadful attitude, wouldn't listen to anything I said, completely misread my son (and definitely thought I didn't know anything about him)- something I have heard from every parent who has seen her and also from other SALTS and portage workers (once they became friends- usually followed by an "oh dear that really isn't very professional of me... but...") The onmly good thing about her is that she is so truly awful that she proviides a good bonding session foor parents. I've made many a good friend bitching ab0out her over a cup of coffee.

I think for most parents professionals are like any other person- we take them as we find them. I went to see ds1's paed last week and was dreading it as he is crap (alcoholic who mutters into the desk and bleats on about MMR irrelevantly). Instead I had one of his underlings and she was brilliant. Great because she listened, sympatrhised, reassured me that the approach I as taking was right and looked interested (even said she'd try and see ds1 at the shcool this week- as I couldn;t bring him to the appointment- as he won't go in the building).
Likewise his OT - great- as soon as it was clear there was no way he was going into the building she arranged to visit him at school and at home.

I've complained to the right people about lack of SALT- including MP and councillors. And nothing has happened. I'm attending a demonstration on Saturday about the closure of a special school - and you know what will happen - absolutely nothing-0 becuase whilst individual therapists may care about our children- (not all do though the SALT i mentioned earlier definitelty saw autistic kids as slightly distateful- god knows why she was working with them) the system doesn't give a shit. It's why I try to get to know the people I'm complaining to- I get on well with ds1's statementing officer for example- and I'm sure that;s helped up get what we wanted int he statement.

And sorry- although ds1's SW is fine- I like her. Social services are crap crap crap. (although again provides useful bonding- at a coffee morning at ds1's new shcool yesterday I was the new girl, but when I said "I have found ss truly exhausting to deal with" the whole room feel about laughing.

Jimjams Wed 02-Mar-05 09:24:50

its also the wait. I waited 2 years to end up with the awful first therapist. I wasn't unpleasant to her- realised she was crap and we were going to have to make alternative arrangements (and refused to send him to the nursery she would have seen him).

I was in the situation where we can afford to make alternative arrangements (and tbh if you look on here I advise anyone who is desperate for therapy to go private if they can afford it). if we couldn't the frustration would have been immense. The therapy my son recieves now makes the difference as too how independent a life he will live. By not giving him therapy he is effectively being written off. if you've wiated years and years for therapy and then you get told your child (autistic, non verbal) will be seen once every other month and you have no alternative then I think its not surprising that you get upset.

Jimjams Wed 02-Mar-05 09:30:36

eidsvold - so pleased to hear your dd is doing so well now.
I do know what you mean as well. Now ds1 is in special school he is receiving the right therapy daily. In one week he gets hydro, aromatherapy, daily sensory sessions, daily PECS practice (all day every day) and the relief for us as a family is immense. I don't need to worry about individuals leaving, I don't need to worry about making up the shortfall, I don't feel the need to read up on therapies and try them out myself. The relief when you know that your child is getting everything they need and therefore being given the best chance to reach their potential is fantastic. All I've ever wanted is for ds1 to be given the chance to reach his potential- whatever that is- and finally finally finally it is happening.

coppertop Wed 02-Mar-05 09:42:11

I consider myself to be very lucky in that so far (touchwood!) the professionals who have worked with my boys have been fantastic. The SALT who works with ds1 attended ds2's multi-disciplinary assessment because she felt that her input could be valuable as she had known him for a while via ds1. She also went against normal protocols at his assessment an rather than just give her opinion she also gave me some recommendations as to what we could do to help while he is on the waiting list for therapy.

The reason I suggested to Nutcracker on another thread that she should ask for cancellations is because of something the SALT told me when I saw her last. We were arranging an appointment time for ds2 to see her at the clinic so that she could go through the paperwork. She told me that when ds1 had been seeing her we were memorable because I was about the only parent who bothered to keep appointments. A lot of parents decide that the appointment is inconvenient or unnecessary and just don't bother to turn up. If someone like Nutty was able to get there at very short notice then the SALT's time wouldn't be wasted.

The CDC team have been great with both ds1 and ds2. At ds1's last appointment with the Paed she told us that she felt almost useless as he was doing so well that there was nothing she needed to help him with that wasn't already being dealt with elsewhere. I know how lucky I am that ds2 was assessed at just 24 months. I was grateful to the pros for not thinking of me as an overanxious parent too.

The one thing that does make me angry is that this level of care and services isn't available to all parents. I hear far too many stories (on other sites too) about parents struggling to be taken seriously. Jaysmum's recent problems are a sad example of this. Instead of concentrating on her children's day-to-day needs she is having to battle her way through the system.

MN has been a lifeline for me and has given me a place to offload when it all gets too much.

mum38 Wed 02-Mar-05 09:49:43

hi

I have a ds (5) with speech and language impairment and from my point of view I've seen some very good therapists (also some not so great but the majority have been wonderful). The problem for us is that even jumping up and down and constantly hassling for appointments, courses etc doesn't result in ENOUGH appropriate therapy for ds. Maybe not the therapists fault but it is the situation. He is not reaching his potential because he is NOT getting the input he needs. Initially we waited patiently for the professionals to tell us what ds needed/what educational setting he should be in only to later find he missed opportunity after opportunity. I am a quiet easy going person who hates to make a fuss but making a fuss is the only way to get any input. I am never rude but I am persistant.

My ds is currently in yr 1 and under the school SALT service so far he has had NO therapy at all just one assessment and it's nearly Easter. I'm sure the pofessional are doing what they can but for my ds it's not good enough.

Best wishes for your maternity leave. Everyone has a right to maternity leave and do do what's best for their own family. I never resent anyone doing that. I'm sure when you hold your baby you will realise as a parent you will do anything to get that precious child the support needed to fulfil his/her potential.

Saker Wed 02-Mar-05 10:25:06

Mogwai

I take your point and I am sure that we are often unfair to the professionals, and also that we sometimes blame problems with the system (ie the NHS and the LEA) on the individual professionals. But I think you are overreacting a bit here to what is on this site. It is a forum for parents with special needs children and it is bound to throw up all our worries, complaints and grumbles about the things we deal with in day to day life. We have to let off steam here to cope with a less than perfect system. I am sure that the majority of therapists are doing the best for our children but like all jobs there will be some who aren't so good. Certainly when I was working there were people who contributed more and tried harder in my company than others.

I would never say that someone doesn't have the right to maternity leave and I agree that it is not your responsibility who covers you. But again you can understand that it is hard for the parent who is beginning to see some progress in their child to feel that the person who is helping them will be going away. Maybe you should see it as the compliment it is to your help rather than as a criticism.

My husband is a GP and he gets fed up with patients thinking they know what is best and sometimes wonders why they bothered to see him when they are not prepared to take his advice so I can see what you are saying with that. However when you have a child with special needs, it is so hard to know what the best thing is - all you know is that if you don't make the right decisions now, you could have lost valuable time and regret later that you didn't act. Therefore you question everything you are told and the ability of everyone you work with. It's not just the professionals, we all ask ourselves each day are we doing enough for our children?

beccaboo Wed 02-Mar-05 10:33:24

Mogwai, sorry you feel under attack - I've found it's not the therapists who are the problem, it's the system. Our SALT is very nice and has been really helpful. But her caseload/waiting list is so huge that we get minimal support. She finds it difficult to address the issue (perhaps because like you she has had confrontations with parents in past?) so she is very evasive about when our next appointment will be. She told me in December that we would be seen in January, I still haven't had that appointment, it now looks like it will be April. This only adds to our frustration.

Before we knew that our son has SN, I assumed that if a child needed SALT, OT etc, then the NHS would provide it. It has been a horrible shock to discover that this isn't the case and that essentially you're on your own. When I hassle our SALT for a quicker appointment I'm not trying to make her life difficult, I'm just trying to get what I'm entitled to.

The NHS has very little to offer ASD children - they just don't know what to do, or can't afford to pay for it. For us, SALT is the one thing we could get from the NHS at this stage that would make a really significant difference.

I think we are going to go private now. We can't afford it, but I am worn down with the constant battles, it really is depressing to constantly make oneself so unpopular. At least by going private I feel I can regain a little control over the situation, and we will be able to get quantity as well as quality.

I hope that you won't feel you can't return to work, it's a vicious circle where the less SALTs there are, the harder the job becomes for those who remain.

Saker Wed 02-Mar-05 10:33:44

Also meant to add - I don't know if you are referring to me about trying to queue jump because of what I wrote on nutcracker's thread. I wasn't suggesting she could get an appt ahead of others just that it was worth trying to find out if it had been booked because they often don't send out details until 2 or 3 weeks before. Also I have had several appts just forgotten - the worst example being, our paed said he would set up a meeting between all the professionals involved with ds2. I phoned up two months later to ask if they would include the health visitor and the secretary had no idea what I was talking about. The paed had completely forgotten to tell him. So I always think it is worth checking if you haven't heard anything.

MeerkatsUnite Wed 02-Mar-05 10:59:42

When we last saw the developmental paediatrician it was late afternoon and her case load of files was stacked up heavens highest. They are working within a confines of a system I would argue is at breaking point or at the very least highly stretched. I am certainly not knocking nor would ever knock a professional trying to work for the best interests of all the children they see. I think if you were to leave a job that you truly love because of the perceived flak you get from some parents then it would be a sad day for the profession you work in.

You never though forget the kind/helpful remarks and not so kind comments made. I will always remember DS's original ed pysch who said that if we made a request for a statement she would personally refuse it. Fortunately (and nothing to do with me!) she was replaced by another ed pysch when he entered school. She felt he needed statementing and after many hiccups which just adds to the stress you're under (LEA lost the paperwork) we now have a Statement. This woman acted in his best interests unlike the previous lady involved and he's doing fine on the extra help he's getting.

I received a letter from our NHS trust yesterday advising that the head developmental paediatrician is leaving to take up another post. I sincerely hope her replacement will be as helpful as she was.

Jimjams Wed 02-Mar-05 11:11:41

I had some mugs made up.

On one side it says " mother from hell" on the other side it says "advocating for my special needs child". the woman in the print shop was a bit bemused It cheers me up when I've had to phone and hassle someone yet again to do something that should have been done ages ago. I gave one to 2 friends for xmas a couple of years ago.

Dingle Wed 02-Mar-05 11:13:29

I haven't read all of this just skimmed over, so I will apologised for anything that is irrelevant.

It has been said that a good "professional" whether it be, SALT, physio or whatever, is worth their weight in gold but is very hard to come by for some of us.

With the extra work and stress having a child with SN brings, sometimes, some parents are at breaking point. Something said, done or not done by a proffessional that you are relying on for help, can unfortunately be the straw that breaks the camels back.

When you have phone calls from a physio, telling you that you don't need a major buggy, you don't need to be using the valuable resources, then sometimes that can be implying that I am a useless mother-I just throw dd in the buggy all the time and that I am not building up her endurance for walking!! What the physio doen't have to deal with is the day to day life that I do, and work on dd's SALT, physio, education,portage, as well as attend hospital appointmets and fit in a siblings life to boot.

When your have fought for SALT for 3 years, had one or two appointments and left in no-mans-land!
When you get that SALT group session and the SALT says "my! hasn't she grown!" and this little voice in the back of my head thinks, "well she was only 1 when you last saw her, she is now 3, what do you expect!"
I am afraid, that happens.

On the other hand we now have a private SALT, who is absolutely wonderful!

mizmiz Wed 02-Mar-05 11:20:01

This is so intersting. Mogwai, I'm an SLT too (as some of you know) and also the parent of a dd with communication difficulties so have a foot in both camps. You are all right.
There are some good slts, and some bad ones. The system stinks, mainly because it is hit and miss and you have to fight,fight,fight. I am so glad that I understand it as in the future I may have to 'fight' for my own dd.

Jimjams, please don't think that your protests and complaints make no difference. They do, believe me!!! We so need articulate confident parents to speak up for what is right.To use the example of special schools closing, well people really are sitting up and starting to realise that this is not such a great idea.
One thing to remember is that there probably is little point directing your complaints to the slt (who, I guarantee, agrees with you!) Send a letter to her manager, cc it to the head of the Trust and your MP. As the they say, the squaky whell gets the grease (eventually..)

Mogwai, I do however feel that one of the points of MN is to let people let off steam. I learn a lot by lurking here and listening to how parents feel about us. it has certainly changed my approach and made me think very hard. We often have to bite our tongues in real life, it's great to let loose occasionally.

I'm on maternity leave too, one that will last 3/4 years!! I had got to the stage when I felt rather burnt out by the enormous demands on my time. Just couldn't do it all which drove me mad, when I knew how much potential there was for an excellent service (and to follow to posters' points here, particularly with DS and ASD. You ladies wouldn't believe what can-and will-be achieved!!)
I felt that I needed to focus on my own kids for a change, especially bearing in mind dd's problems.

One final point. I've worked in Special Needs for 13 years. in this time, it has changed beyond recognition. The boundaries of what is possible for children with S/N (in terms of meeting their potential)are being pushed back further and further. So exciting and the reason why i am going to do an MSc in Learning Disabilities next year.

coppertop Wed 02-Mar-05 11:25:01

Jimjams - I like the sound of that mug.

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