WHAT NOW?

[cmuir]

Hi

 

Probably heard this all before, but ... My son is 4 now. Since he was just over a year old I've been on and on and on at my Health Visitor and GP trying to persuade them that something wasn't quite right with my son (namely his extreme and off behaviour). Have to let off steam, but they're both a couple of useless so-and-sos. It took several nasty letters and 2 years later to get them off their backsides and refer my son onto a Paed. That was last July. Since then there are now 10 people seeing my son who say they've looking into possibility that my son "has something on the spectrum". I'm fed up that we're being passed from pillar to post. I work full-time and spend every night looking at this website for advice, reading books, writing letters, etc. Feel like I've finally ran out of steam. HV and GP don't return phonecalls (5 this week to be precise!). Been waiting on an emergency referral since mid January to CAMHS. Specialist is dodging my phonecalls too! Sick fed up getting nowhere. Meanwhile I have to put up with a barrage of physical and verbal abuse from my son. Breaks my heart watching him behave the way he does and he so desperately needs guidance and support and isn't getting it. Can't take him anywhere without him flying off the handle. He's so controlling. My husband has to be one of the most selfish, self-centred person that I know as he leaves everything up to me. Also having a battle with EP/Education Dept as son is due to start mainstream school this summer. The support they said that they'd be applying for hasn't been applied for. I'm livid. I'm fighting a losing battle. What now?

 

Caroline.

[jen]

Hi Caroline,

 

Sorry you are feeling down. We all have our down days now and again.

Have you applied for a statement from the LEA? Most LEA encourage you not to have one but you can go to tribunal if they refuse. A statement is a legal document which lists your childs difficulties and the support your child needs. You do not need a diagnosis but there does need to be concerns.

 

If I was you I would also change your GP. You need someone you can rely on and the relationship as already broken down.

 

When your child does start school there is a fantastic service called Specialist Support Service or Visiting Teacher service. These people are our childrens guardian angels. You could contact them before your child starts or you can ask the headteacher to contact them. They go into school and monitor your child and give the staff ideas and support. They normally run a parent course as well.

 

Please remember your childs behaviour is telling you he can not cope, do not take it personally.

 

MEN

Well some men find having a child with special needs very freightening and confusing. It took my husband several years to accept our sons diagnosis. He still does not attend any of the meetings or write any of the letters he says he would not know where to start

 

Sending lots of <'> <'> <'> <'>

Jen

[helenl53]

I feel really sad reading your post

 

I am sending you lots of these <'>

 

Why does it have to be so ###### hard. Things should just happen - but they don't and we have to fight for the crumbs that are thrown out.

 

You are amongst friends here. Stay strong.

 

\Love

 

HelenL

[bjkmummy]

hi,

i too was in the same position as you. my ds is 4 years old. last year about this time the hv went to see him at nursery and concluded he couldnt cope with change but he still was having problems. once he started school last sept it was quite apparent he was different. i moved to a new area in jan and changed doctors - the change of doctors was such a relief - they finally listened to me and instantly referred him. within 2 months he was seen by cahms and he now has a diaganosis of autism, dyspraxia, adhd and sensory issues - so it just proves that mum is usually right

 

i would definately change doctors and even hv. i have found every hv so far absolutely useless. i had a new on round to see my younger osn last week and she wouldnt have been able to psot an autistic child if they went and smacked her in the face!!! thankfully bens consultant also listened about my ypounger son and he has referred the younger son to a paedatrician so he should be seen soon.

 

dont give up - its so easy to - im made that for a year a believed the hv and old gp and my son started school with no help and is now struggling

 

good luck

[cmuir]

Hi

 

Thanks for the advice. Just discovered this morning after waiting 12 weeks that CAMHS won't see my son on the grounds that there are a lot of people involved already. They feel this could be detrimental. I agree, but it's clear the wrong people are seeing him and not damn well doing anything. I'm so upset and annoyed!

 

Caroline.

[bjkmummy]

hi, i think ive read somewhere that if your son is in nursery you can ask for a statutory assessment of him - failing that once he gets to school you could request on ethen

 

my heart goes out to you because it is so soul destroying. im finding that still now and i have a dx but now am findong out that if i had a dx years ago all the extra help i could have got.

 

dont give up - i know it is so hard especially at the moment because you seem to have hit a brick wall but someone will listen to you

[Suze]

<'> ........gosh you poor thing.If I were you I would concentrate all your efforts on the nursery /school situation.....try to find out about the hold up on his provision for sept.........do you have a named school yet??

[cmuir]

Hi

 

I've sent out several letters/emails to various people within the education department stating that they've went back on the support that was originally promised and that the proposed level of support is inadequate to say the least. At least it's in writing now. I've also pointed out that they'll be setting my son up to fail before he even starts school! They keep banging on about mainstream schooling being best and I'm willing to give it a try on conditon that they ensure my son has a level of support commensurate with his needs. Forgive me for being negative, but it will no doubt fall on deaf ears again!!! Feeling extra low because on top of the school/support issue CAMHS have decided they won't see my son ? took 3 months to tell me that. CAMHS specialist finally returned one of my calls this afternoon. I'm afraid I left her without any doubt as to what my feelings are and how they've turned their backs on my son. They won't see him on the grounds that there are other specialists involved. I pointed out that we've been in the so-called loop for over a year and nothing constructive has happened. In addition, the assessments that she spoke about are singular and happened over 3 months ago. She just wouldn't see reason. I'm livid. I promptly got on the phone to our consultant who's on holiday! 'Fraid this just adds fuel to the fire and I'm even more mad, especially when I discovered it took her 7 weeks to send the letter of referral. That will be going in writing in a letter of complaint. Talk about banging me head against a brick wall. Does anyone actually listen? My little boy is behaving the way he does because it's a cry for help ? he's not coping! I can handle the behaviour, etc, but what I can't handle is watching him 'suffering' and him not being given the support and guidance that he so desperately needs. I'm trying to hold down a full-time job and do the very best I can for my son and it's still not good enough. I feel like I've failed him (I really do). I'm desperate and can't get anyone to listen. What now?

 

Caroline.

[Suze]

You really must,nt think you,ve failed him, the fact is you have,nt the system has.Camhs referred to your son seeing other specialists....who are they??.............do any have the ability to give a dx.What support has your son been offered for when he starts school??............take care Suzex

[pumpkinpie]

It sounds as if your son needs to be in specialsist nursery provision now! Have you looked at what is available in your area - Sure start, resourse nursery special nursery school. Early intervention can make a big differnce. I would use sure start if you can ?

 

I would definetley change my gp , practice if nec because you arennot getting the help you need.

Is there a portage home visitor service in your area which could hlp? They are excellent!

 

Does your local lea have an early years service who can support you.Is there a support group inyour area, other parents are often the best ones at pointing you in the right direction regarding local facilities, being in a support group is about supporting each other even if its just a moan on the phone!!!!!!!!!!!

 

In our area we have a service called carers resourse they support carers and can make enquires on your behalf it is confidental if you want.

 

If work is too much remeber as the parent of a disabled child you can apply for special emergency leave - your health and well being is as important as your little one!!!

 

I am sending you a hug because you need one, <'>

We are all here if you need a good moan, good luck!

[mum22boys]

Hi Cmuir, <'> <'>

 

Sorry you are going through such a bad time but unfortunatly I know how you feel.

 

We too have been floating in the system for a year and have another six months to wait if we are lucky!! could be longer.

 

I have accepted now that we probably won't get any help for M. Harsh i know but it seems very unlikely. CAMHS are a waste of time in our area. They don't deal with M's problems, no one here does. So what I was after was help for his temper tantrums because holding down a 6 year old is difficult , I dread the day I have to hold down a 10 year old. I told them he needs help now but there is no one to do it.

 

I think it's disgusting we have to wait so long for assessment. Not to mention as you say trying to convince the so called 'proffessionals' that something is 'wrong' with our children. I too battled with several HV since M was two all who said he was normal.

 

Do you have access to a SEN Health Visitor, i must say ours is excellent she is the only one who ever gave me any hope that someone was listening to me.

 

I also agree you should try and change doctors. Do you just have one doctor at your surgery? If not then it may be easy to get a second opinion.

 

Not sure if anyone has suggested it but have you called the NAS helpline. I found them very useful when I was seeking guidance on which way to go. i also joined the NAS last week and got through lots of info.

 

I hope you are feeling a bit better today. It all gets us really down occasionally. Take Care

 

mum22boys

[carrieq]

Hi Caroline,

Have you made contact with The Lothian Autistic Society? They hold monthly meetings and I am sure the parents who attend will have experience of this and know how to help. They may be able to give you pointers as to how to push things forwards. Our early years system is slightly different to yours I think. Ds was assessed by EYCAT initially to work out levels of support needed for school but this was when his behaviour was said to be frustration caused by a language disorder. It was when he went to school and just couldn't cope and neither could the school that things started moving very quickly and the so called professionals started to listen to me.

I initially went to the GP and asked to be refered to the community paeds who then refered to mental health at Sick Kids. They have weekly meetings at the beginning of the week when they review the waiting list and prioritise so I phoned every week with additional info as to why ds needed to be seen. He got his appointment after 3 months which was last June and things have moved at a good pace since then.

Carrie

[cmuir]

Hi

 

After hearing that CAMHS are refusing to see my son for the second time in six months, I've spent the past couple of nights drafting out a couple of very strongly-worded letters. One is going to my son's consultant to get her the chase things up and the other is going to CAMHS. I've basically said that it is imperative to get a diagnosis in order to get help and support from some services which are only accessible with a diagnosis. I've went on to say that they are denying us the help by failing to assess my son which would contribute towards a diagnosis. Finished off by saying that the letters and responses would be going to my MSP. Feeling quite smug just now ? hope that puts a rocket up their backsides!

 

Meanwhile on the education front, got a response from the parent and pupil support education manager who seems really helpful. He's contacted our EP to get more information. Don't think they've got a leg to stand on as the EPs very own report states that my son poses a danger to himself and others and needs very close supervision. Nursery Manager's report says the same. Think I may have them by the dangly bits after quoting various Acts!

 

Fingers crossed. Here's hoping! Would like to remain smug for a bit longer and hope that I don't end up feeling like I've fallen on my face again.

 

Caroline.

[pumpkinpie]

Well done, hope all goes well. Remember you are fighting for your son so if you have to be firm with professionals so be it. I think they often play on our sense of fair play and dont act fair themselves.

Let us know how you get on.

I now put a time limit on letters ie 2 weeks to help focus peoples minds and keep a note of all your phonecalls.

[rainbow queen]

hi cmuir

im still trying to get my son dx so know how you feel

i think what you did was right-its what i did too ,wrote some detailed letters about it all,as i felt i was getting no where.

if you dont write or make a fuss they will not bother -well they didnt much in my sons case so u have no choice to battle on

 

wishing u good luck

 

iv just had first few appointments with camhs aftyer waiting over 6 months for them-still waiting to see what happens ..........

xxx

[cmuir]

Hi

 

Seems my letter-writing exercise and phonecalls have finally got some people to take notice (course I did threaten legal action as well as getting my MSP involved!).

 

Got 3 very positive responses (which I hope doesn't turn out to be a load of flannel).

 

I think there's a lot to be said for pester-power and I'll certainly not be giving up!

 

It's a start ...

 

Thanks for all your responses/word of support. Have to say that it's not comforting to hear of other peoples battles, but it is comforting to know that we're all in the same boat if that makes any sense!

 

Caroline.

[cmuir]

Hi

 

Just a little update ...

 

Seems like the phonecalls and letters may finally pay off.

 

On the education front, seems like they've done a U-turn (but as yet aren't willing to commit formally ? though I have emails as proof!!!). Seems like a learning assistant for 10+ will be granted.

 

On the health front with regard to the possibility of finally getting a diagnosis, I've managed to get in contact with a specialist who really seems to know what she's doing. She's read my son's file and says that a diagnosis should be given as a matter or urgency now. I've heard nothing but good reports said about her and whilst I'm trying not to set myself up for a fall by being naaive, I'm hoping for the best. An appointment was arranged on Friday for Tuesday. Brilliant! Fastest appointment ever.

 

Watch this space.

 

It's been sheer hell (and there will be a lot more moments like it), but I've got faith in this specialist. I like what she had to say and I've heard lots of people sing her praises.

 

Got everything crossed!

 

Caroline.

[Kathryn]

Oh Caroline, that sounds really hopeful, at long last you seem to be getting somewhere. I hope the appointment goes well this week - keep us posted.

 

K x

[cmuir]

Hi

 

Finally landed a major breakthrough over past 3 weeks. Now have a diagnosis of Aspergers as of 5/05/06. I had been phoning the consultant's secretary every couple of weeks until finally the consultant called me one Friday. She arranged an ADOS on the Tuesday and 10 days later (which was an agonising wait!) we got our diagnosis and she identified where my son's problems lies.

 

The relief was overwhelming ? I ended up howling in the consultant's office! I was just so petrified she would say she didn't know what was wrong with my son. Hope this doesn't sound cocky, but my message to those who are still battling for a diagnosis is to keep going. All those people that told me that a diagnosis doesn't matter, haven't a clue. Now that we have a diagnosis, there is help that is now being offered that previously wasn't available to us. It's damn hard fighting all the time, but the relief is overwhelming! Don't give up.

 

Caroline.

[board]

Hi

 

Finally landed a major breakthrough over past 3 weeks. Now have a diagnosis of Aspergers as of 5/05/06. I had been phoning the consultant's secretary every couple of weeks until finally the consultant called me one Friday. She arranged an ADOS on the Tuesday and 10 days later (which was an agonising wait!) we got our diagnosis and she identified where my son's problems lies.

 

The relief was overwhelming ? I ended up howling in the consultant's office! I was just so petrified she would say she didn't know what was wrong with my son. Hope this doesn't sound cocky, but my message to those who are still battling for a diagnosis is to keep going. All those people that told me that a diagnosis doesn't matter, haven't a clue. Now that we have a diagnosis, there is help that is now being offered that previously wasn't available to us. It's damn hard fighting all the time, but the relief is overwhelming! Don't give up.

 

Caroline.

well done i know how you feel when people dont listen to what you say my daughter 6 has a dx sapergers on the 12 of last month we as mothers now when there is some thing wronge all the best jill

[Bagpuss]

Well Done Caroline Your child is very lucky to have such a determined mum We've been thru lots of "battles" over the years, and have found many times that we've had to get very stroppy and persistent to get our daughter what she needs.

 

Take care,

 

Debs

[sam1414]

Hi

 

Probably heard this all before, but ... My son is 4 now. Since he was just over a year old I've been on and on and on at my Health Visitor and GP trying to persuade them that something wasn't quite right with my son (namely his extreme and off behaviour). Have to let off steam, but they're both a couple of useless so-and-sos. It took several nasty letters and 2 years later to get them off their backsides and refer my son onto a Paed. That was last July. Since then there are now 10 people seeing my son who say they've looking into possibility that my son "has something on the spectrum". I'm fed up that we're being passed from pillar to post. I work full-time and spend every night looking at this website for advice, reading books, writing letters, etc. Feel like I've finally ran out of steam. HV and GP don't return phonecalls (5 this week to be precise!). Been waiting on an emergency referral since mid January to CAMHS. Specialist is dodging my phonecalls too! Sick fed up getting nowhere. Meanwhile I have to put up with a barrage of physical and verbal abuse from my son. Breaks my heart watching him behave the way he does and he so desperately needs guidance and support and isn't getting it. Can't take him anywhere without him flying off the handle. He's so controlling. My husband has to be one of the most selfish, self-centred person that I know as he leaves everything up to me. Also having a battle with EP/Education Dept as son is due to start mainstream school this summer. The support they said that they'd be applying for hasn't been applied for. I'm livid. I'm fighting a losing battle. What now?

 

Caroline.

[sam1414]

i no exactly how u feel i sometimes think i can t cope ,but there some good days too, it does take a long time to get a diagnosimy son was nine . keep your chin up

[annie]

<'> Caroline <'>

 

It may have taken a while...........but you got it..........well done

 

Annie

xx

[rainbow queen]

oh my god cmuir

 

IM SO PLEASED FOR YOU

 

i know how hard you have struggled as i have followed your posts for a while-im also nearer getting dx and i felt what you did-getting scared in case i get let down again.

 

well done honey <'> <'> <'>

 

best wishes to you

regards marie xxx

[carrieq]

Well Done!! I know what you mean about the relief, that little bit of paper will act as such a lever!!

Keep in touch and let me know what kind of support you find for your son and I will do the same. It will be interesting to see how City of Edinburgh and East Lothian compare!!

A busy week at Sick Kids!

Carrie

[LittleRae]

Well done Caroline for not giving up. So pleased for you.

 

It's great that you have the diagnosis before he starts school

 

a

[kirstie]

<'> And you know how pleased i am for you too!! <'> <'> It is so true to say go with your gut feeling. I did.

Be good to yourself over the coming days/weeks and have alittle YOU time. You'll need the batteries re-charged for round 2.......Education department!!!!!! seriously, take time to digest it all. And well done hun, YOU DID IT!!!!!!!!!!!!!!!

[carrieq]

Hi Caroline,

Do you know about the Help courses run by NAS for newly dx? They are hoping to run a course in Edinburgh if they get more names. The info is on their web pages.

Carrie

[CarerQuie]

Well done on persisting to the end.Hopefully,your child will now get all the help that is required to make progress and stand a chance of succeeding.xx