I just had a rant at my HV and now I am shaking with anger and worry and stress

[hereidrawtheline]

I phoned my HV up (again) to chase up DS's appointment to see a doctor to be DX on the NHS. This is the 4th referral as they keep "losing" it.

She told me she has heard he will have an appointment offered to him in April - I was annoyed she hadnt called to tell me as she knows I have been chasing it up. Then she said "I can see you are having trouble coping" which pissed me off as she always goes on about how it is me who has the problem because I am shit parent. I need to do more time outs, more interaction etc total and utter bullshit I do nothing but interact with my DS and he doesnt need TO for going into meltdown because of bright light, whatever, you name it.

I said "I am not having trouble coping, it isnt me, I am doing fine, I am having problems watching my son suffer from Autism while the health service isnt remotely interested"

She said "well who says he has autism?" and I had to go through the whole fucking thing again for the 10th time both in person, over the phone AND in writing about the private doctor and THE VERY OBVIOUSNESS of it all. I am just shaking. I told her I was tired of her making me feel I had to justify myself or that it was all in my head when he has met him once one fucking time in his whole life and on that basis she thinks she knows him better than me and all our friends and family.

I am not a bitch and I am pretty shit with confrontation and whenever I ever "have a go" at anyone, even if I know I am in the right I am racked with guilt for ages afterwards and feel sick to my stomach. I wasnt horrible to her, you know I didnt shout or swear I just expressed my anger over the way the whole thing has been handled. And she was just saying "ok Mrs. HereI..." etc like she was placating a stupid mother and I just feel so ANGRY.

Calm me down please. Tell me not to phone her back and apologise because that is just the stupid sort of thing I would do. For gods sake it really isnt that I dont have a backbone, the core of me is made of steel, especially when it comes to DS. But I am just so crap about the rare times I have a go at someone.

Actually it sounds like you handled a very diffucult situation extremely well, not crap in any way.

Don't phone back -have a cup of tea and mumsnet for a bit. Later on you will start to see you did a good thing and feel proud of yourself.

Hope you get the NHS DX you are waiting for soon.

HV know nothing.

How old is your DS?

We are waiting to get a DX for dd2 (3), i was told in November that we will recieve an apointment with a SALT and they would push it through as urgent but it wouldn't be before christmas, we are still waiting .

Don't phone back and apologise she sounds like a PITA.

She hasn't got a clue what she is on about, time out doesn't work for ASD.

Now sit down and have a cup of tea .

hereidrawtheline so sorry its still not sorted i myself is losing helping ds hes got a dx but the school just wont help even says hes not got it i am on the verge of giving up!

I have to collect the DCs now, I hope you are starting feel better - you did a great job of standing up for yourself and your son.

thank you thank you thank you

DS is 2.6

I wont phone back and apologise and thank you for telling me not to. The thing I said to her is "you are all leaving me solely responsible for sorting things out for him, I have basically done a crash course in ASD because none of the people whose job it is to help are even listening. I am writing things down and no one wants to read it. (keeping records etc)"

Does she think I want him to be autistic???? Thanks very much I would rather he didnt have traumatic 6 hour long meltdowns in the middle of the night when all DH and I could do was sit there on the floor next to him and cry because he cant be touched or looked at. Does she think I want to spend £100 on a weighted blanket in desperation of anything out there that will help him feel secure? Do I want to say the same sentence 10 times in a row? Do I want him to shriek in agony when a baby cries near him and get horrible looks from other parents? No of course I dont want any of it. He is a gorgeous, bright, happy little boy who deserves the best in life and no one is going to hand it to him on a platter so for fucks sake I am his Mother and its my job to take it for him. I didnt ask for any of it, a prem baby, a labour where we both nearly died, months of crying, routines that must never be touched. But he is my baby and I love him more than anything on this whole planet and I would be a totally shit parent if I didnt try to take action when he needed me.

ok. sorry. Really I am sorry I know you all know all this and you are the same as me. But I am just so angry. "who says he is autistic" My answer was "did you get the letter I delivered to you last week detailing it all again in writing with names, addresses, dates etc?" No its just me saying he is autistic because I am bored and havent got anything better to do.

I am angry too, angry on your behalf that you have to go through this, angry on behalf of your son that he isn't getting the help he needs. I had alot of rows with health visitors on the way to recieving my 3 year olds dx. I wrote alot of complaint letters. In the end I recieved an apology, so I was right about complaining. ANd so are you! You are a great mum, and your ds is lucky to have such a fantastic and capable mum. You are doing so well, I cried in front of my ds's paediatrician a couple of times, and in front of the salt. I don't even think about it now
Have a few chocs, and give your ds a cuddle or whatever makes him happy, and remember that most health visitors are quite stupid, know nothing about asd, and certainly do not have valid opinions.

I've had exactly the same from paediatricians. Nothing wrong with dd, it's just that I'm such a hung-up parent that I actively want to take her round in a wheelchair and watch her in pain, because I am so insecure. I was still having doctors questioning the diagnosis 4 years after it was made (by a consultant rheumatologist and a specialist NHS clinic). I know it's going to happen again.

Do NOT apologise. It can only damage your ds longterm.

NOOOOOOOOOO dont apologise to her,the silly moo, oh i could sit here and bore you for hours about my tales of the HV,s who came our way, i think we exhausted 4 of them in the end over DD.

and she IS a silly moo,HV,s dont know much about ASD or subsequent difficulties,we had to get on to the Chief exec twice about 2 different ones we had who were quite frankly completely unprofessional and downright disgusting in their behaviour to us.

have a nice cup of tea and a glass of wine when your DS is in bed, to try and relax you.

YOU have done nothing wrong and i feel peed off on your account that HV,s are still demoralising mothers who are rightly concerned about their children.

if you look under my history there should be a few tales of what we had to put up with,like deeja we wrote a lot of complaint letters about professionals and ive ranted and raved and been close to tears,but i dont care now, im gearing up for a HUGE battle with CAMHS,its coming i can feel it,and ill be on here no doubt ranting and raving.

sending you HUGS

jen
xx

also i find now what helps if any of the "so called" professionals question dd,s private dx of ASD or hemiparesis is by saying in quite a loud voice

"I BEG YOUR PARDON WHAT DID YOU JUST SAY"

they usually start muttering and change the subject.

Might be worth getting him to wear earplugs whenever you have to take him anywhere. I have sensory issues and on a wobbly day it makes everything so much more bearable.

You are a wonderful mother trying her hardest to get her son the support he needs. Ignore the silly HV who knows nothing in this case.

I hope your appointment comes along soon.

Thank you Tclanger for the link I might get those indeed! I just got him sunglasses as bright light hurts his eyes it was a 2 day coercion campaign to get him to wear them but once I did he loved it and now things they are very cool!

{thank you madmouse I am so excited I have never had a MN standing ovation before! hehe who would have known what dizzy heights moral outrage could take me to!}

I am going to do a complaint in writing. Add it to the list of things I have to do... DLA form, complaint letter, reading all the books I have got myself to learn how to do stuff, make a load of new notes in my ASD journal, oh hell there is a lot more. Really A LOT more! No wonder I dont sleep!

don't phone up to apologise, and don't have anything to do with the HV again ever if you don't want to. some area have SN HVs, such a person might be more clued up. Sorry you are having such a frustrating experience.

I agree - you handled it just right.

Very exciting about the progress with the glasses. These are the things that matter long-term.

HIDTL - Well done for standing up to the HV. She should be supporting you, not telling you off! My HV is crap, I wish I had the HV I had with DS1, she was the best!

And don't apologise to her. If anything she should be the one doing that!

Fingers crossed you get the appointment soon.

i second the SN HV,we had our area ne and she was fantastic,she was at a couple of meetings where the SENCO and my HV were trying to bully and railroad me into thinking that the CDC assessment DD had was wrong and DD couldnt possibly be ASD, and she was great.

she came to our house on the quiet and gave me 3 massive egg timers to help us with DD always needing routines etc.

i usually bump into her at support groups and help courses and she always gives me a big hug.

if you have an SN HV then would recommend getting in touch with her as they are usually very well clued up.

Sorry that your HV is un-supportive and put you in such a terrible situation, but it souns like you coped with it extremely well, and handled it better than I would - I am one of those people who spends ages after the incident thinking about what I should have said.

I dont know if its relevant, but where we live there are quite a few different 'drop-in' clinics within the area, which are run by different HV - could you access that?

I'm really impressed by the way you handled that conversation. I am also one of those people who think of the right thing to say after the right time to say it has passed.

I fought for years to get a dx for my son (AHDH) and came up against the attitude of your HV countless times. The first "expert" we were referred to said his problems were down to bad parenting and a father who worked nights (he was 3rd of 4 and the others were NT)

You did handle the situation well. I find if people doubt that Ds1 has difficulties I just get them to speak to him. It's not the full extent of his ASD, but it does give a very quick snapshot that there's somethign going on.

D HV o not apologise. Never feel mad/bad for wanting the best for your ds. We have 6 children, 4NT, and two with ASD-both boys, and one of these also has ADHD and the other Dyspraxia.In our journey with all our children, i have only found 1HV who saw there may actually be a problem-this with my son dx with ADHD.I find most HV are fine, if your child is following the normal developmental route, but they are totally out of their depth and not trained, to spot potential difficulties or understand them. Reading this thread has confirmed this for me. We have had run-ins with so-called professionals across the services, and when we accessed our sons CAMHS files could not believe what we were reading.(I would strongly advise anyone who is continually finding professionals hinting or saying that there is no problem with child, it is to do with the way they are parented, to access files-they can make the picture v. clear). ASD/Autism, are so misunderstood-even by many professionals who should know better. But, if they would LISTEN to what the parents are saying-routines, obessions, meltdowns,poor communication/social skills, not like other children,these present a consistent presentation of a pssible ASD disorder. I know this is turning into bit of a rant, but we have been sooooo let down by the NHS, and the consequeces for our son and us are HUGE. Our son with ADHD only received his dx of Aspergers last year-hes just turned 13.All those yrs of help he should have been getting, he didnt, and it has really impacted his mental health(and ours). So i would say to everyone concerned with their child,(no matter what the difficulties), keep going, do NOT be fobbed off-at the end of the day, you are the expert in your child not the preson who sees them a couple of times for an hour.