I've decided I'm not keen on Amsterdam, and would like the first available flight back, please [sad]

[lou031205]

For those that don't know, I am currently taking DD through the gamut and maze of assessment for undiagnosed delays, and collapses.

Today has been so hard [exhausted]

I went to our church toddler group, and whilst generally well behaved, DD got obsessed about being 'sore' down below, but nothing amiss and then saying 'not sore now', only to resume her 'sore' mantra. I eventually put sudocream on her in the toilets, which did seem to help.

Then she managed to get into the bookshop, and pulled cards off of the displays, with the finale of finding a big pair of scissors. I turned around to see her holding them, open, against her forehead, about to cut her nose and fringe off.

Walking back to the car park was a nightmare (it is only 25 yards away), as I was carrying DD2 (14 mo) and DD1 was stumbling more than usual, and resisting walking to the car. She fell over in the middle of the car park, and only the wrist strap I use saved her from really hurting herself, but she wouldn't get back up, and all I could do was grab her wrist and haul her to her feet because there were cars coming.

I had the health visitor for a visit today, and I spent the time having to explain why she had been seen by the doctors, then she asked "have you been concerned about her, then?"

Er, yes:
-When she didn't gain wait well.
-When she was puking all over me so much that I didn't change my top unless I had been puked on 4 times (couldn't be reflux because she wasn't losing weight ).
-When she only had 2 sounds at her 8 mo check.
-When she didn't crawl until 11 mo.
-When she didn't cruise until about 18 mo.
-When one foot turned out as she cruised (finally referred to physio).
-When she still wasn't walking at 19 mo (almost got pierdo boots, but physio decided against).
-When I couldn't control her and she was a whirlwind in public.
-When no method of discipline seemed to have an effect....

Anyway, you get the gist. So the health visitor mentioned Homestart, and said she could refer, but last time they tried to refer there were no volunteers.

She made no mention of portage, even though with 18 mo delays DD surely meets the criteria, so I had to specifically ask if she qualified for referral. Good job I have MN .

DD was tired this afternoon, so clingy, so HV said 'but she's not hyperactive, is she.'

YES SHE IS - it is part of the reason she is having 1:1 at preschool, and her assessment report says that she is very active and hard to focus, and I saw that the HV had a copy with her!

After the HV left, DD went wild, running, screaming, squealing, even climbed up the bannister but got stuck half way up. Fortunately the stairgate stopped it being higher.

Then I was late picking up DH from work because the phone rang and DD wouldn't allow me to put her tshirt back on or trainers, and I couldn't catch her because I had a phone to my ear.

Then on the way to get DH DD got obsessed with seeing the moon, and got hysterical every time we changed direction or there were trees hiding it.

Can I get my plane to Paris, now, please

oh sorry its been a tough day for you havent much to say apart from i know how your feeling my ds with ASD can really cause me a terrible day not wwalking home from pre school screaming laying on floor crawling not walking kicking and screaming when i try to carry him

its tough so you have my sympaphies xx

Just wanted to say well done for not running away!
I've decided to just politely decline HV visits, realised they were just a waste of my time, she had nothing to offer that I couldn't get off Mumsnet or via other health profs.

Sending you a large virtual cuppa...

Thank you all, feel a lot better for sharing with people who KNOW.

And Amber...that cuppa tasted GOOD

About your HV.
Is she one of the stupid normal HVs, or is she a special needs HV?
I've somewhat ditched my 'normal' one as she was becoming obsessed with me and how I was coping etc. - to which the honest answer was OK, sometimes good, sometimes not so - which she nodded knowingly at but did f* all else.
Any tome I asked a question about DS, his future, support etc. 'she used to say, all he needs right now is you and your love' in the most vom inducing patronising type way. Which meant she had no idea how to help me.
Yes, I bloody know that and he's got it, but much as I love him, it's not going to help him on its own is it?
So I pretty much demanded to see the special needs HV (quite a wait) who is coming to see us next week. I've spoken to her on the phone about my concerns and she already had answers for me. I am looking forward to meeting her.
Can you get one, if you haven't already?

Feelingbitbetter, that's exactly what my HV is like! Only with an extremely dull demeanour. I'm avoiding our paed too at the moment as DS has all he needs and visits to her clinic office are a nightmare. It's taken me a while to work it out but I really think it's important to avoid anything I know is not going to benefit my family! We have more important things to do.

hello lou that sounds like a tough day.

and ,< should really be a head banging against a brick wall emoticon >at your hv, though I have never got on great with mine, patronising would be a compliment.

is there anyone else with specific sn training that can give you better support?... maybe someone on here can advise?

Thank you all for understanding. I could cry, really I could.

Today is starting out badly, tbh. I took DH to work, and on the way back DD was obsessed with my friend's little girls. "I want H, K." one hundred times with screaming tantrums.

Then she peed in her trousers, a new thing at the moment, she has been toilet trained consistently for at least 6 months. When I came through I realised that 14mo DD2 had crawled through the pee, so that was a new pair of trousers for both of them by 08.45

Bizarrely, DD1 has asked to go to bed, so perhaps she is coming down with something.

On the HV front, I am rapidly coming to the conclusion that the HV are great with the parents who are needing support to care for their NT child, but flounder when it comes to SN.

I did think that me having to ask about Portage when I had just told the HV that there were 12-18 month delays at the age of 3 was a bit much

I suppose that I am at that stage where I know something is not right, but don't know what is 'wrong' so can't determine what support I should be asking for. I just know it is hard work and with another on the way, can only get harder.

No-one even seems to be telling me how severe an 18 month delay at the age of 3 is classified at, and all the google results talk about standard deviations from the mean - great if you have access to charts, but not too good when you don't!!

Feelingbitbetter, you can probably see my dilemma, I don't even know if DD qualifies as SN, because they just talk about 'delay' and don't classify it, and I have nothing to compare to. Equally, I then think would they give 1:1 funding until she turns 5 if they thought she was suddenly going to catch up? I'm not so sure.

I'm not shy about difficult subjects, I'd rather they just told me the facts, and then I could get ready to fight for her. Instead it seems that I have to ask the right questions or I don't find out.

You might be right, I've read on here that extra infuriating behaviour often precedes illness.

Have you seen the checklist here? (scroll down)

lou, so sorry you are having a hard time , DS3 can be very hard work so I know how you feel.

DS3 is 4 1/4 now and things are a lot better than they were one year ago, although he is still basically non-verbal. But we've had a lot of help and support - doesn't sound as if you are getting any . Shocked at the delays in portage in your area!

Lou,
From what I've read on your posts/threads, DD must surely be classed as SN. What you are experiencing with her must be an incredible strain . Please phone your Paeds secretary, she will be able to help re; ref to SNHV and portage. I'm still shocked at the lack of support other people get , we must be very lucky.
Developmental Delay, though a bit limp-wristed and vague, is a Special need in itself. If I've read this correctly and can add up you have a 3 year old functioning at the level of a toddler. I'm sorry if that sounds blunt (I truly don't mean to be), but that must qualify her and you for extra help.
Please phone them, GP, useless HV - anyone who can get put you in touch with the people to give you the support you need.
Are you claiming DLA?

Hi again. Can't tell you how much your comments are lifelines!

Buckets - she doesn't tick many of those things on a list. Loves nothing more than to wave bye bye and tell people she loves them (a bit too much, really). She gives eye contact well. She is verbal, etc. But just thank you so much for even thinking to point me in that direction.

Sixspot, I can only guess at delays for portage, because I only asked about it yesterday, thanks to MN knowledge. Hopefully won't be too long?

feelingbitbetter - thank you, so much, for saying you think she has SN. In a wierd way it seems like I feel that I am trying to muscle in on an exclusive group that I don't belong to. But if I don't have a child with SN why is everything so hard?

I am not claiming DLA yet, nobody has mentioned it at hospital etc, so I kinda figured that maybe they don't consider it something we qualify for, but I don't know if they would say? To be honest, it is a bit of a whirlwind given that we weren't even alerted that our experiences were because of a 'problem' until 18/09/08, so it has all been very sudden. I feel a bit of a fraud even considering applying when I read what some of the parents on here have to do for their children over and above others of their age. Yet then I look at others of her age, and could only dream of being able to be like their mums You can see my head is a little mixed up by all of this.

Lou,
I don't know much about DLA as DS only 5 months and thankfully, only needing a teensy bit more care than others his age at the mo.I honestly don't know if Developmental delay is enough of a diagnosis to apply, but please have a look.

I found this website very helpful.

Look at caring for someone section then (apologies in advance) caring for a disabled child. 'Tis a mine of useful info on whats available, who's who etc. Perhaps some things you don't even know about yet. You can fill in a DLA application on line there, tho I recommend you look at the cerebra website first who provide help in filling out the dreadful thing. I say I recommend, lots of other MNers recommend really, but I bow down to their vastly superior knowledge.

One of my frustrations which my stupid HV was that I felt I needed to do things and know things, but she couldn't help me. Some other knowledgable MNer led me to that website and just being able to read things, even for waaaaayyyy in the future has been so helpful in making me feel on top of things. More in control - well, a bit anyway . Knowledge is power, as they say!

Damn......with my stupid HV. I wish I would read before I post

Must be horrible not to have a DX, we've been very lucky to get DS's at age 3 (Aspergers.) Hopefully one day you'll get some definite answers and can put all the maybes and what ifs out of your head.
You don't need a diagnosis to get DLA, just send every report you've ever had with the app. The application is incredibly painful to do as it forces you to face up to your whole family's status as a SN family but it's worth it. It can increase your child tax credits depending on your income and if you don't work, you might be eligible for carer's allowance. Keep asking questions / crying/ranting on here and good luck.

i have just got dla as my ds doesnt sleep through the night still has poor undertsnading etc no danger awareness

claim the pack and fill it in only thing is you have to be so negative and its truly heartbreaking but even if they give yoyu low rate its a little something extra you have to basically make the point of why your dc is different to another child of that age they will then write to anyone involved in your dd life gp SALT etc who will tell them there points of view and dla will make the decision on what rate if any they think you are entitled to

i woudl definatly apply its worth it as every little helps but dont attempt to fill out in one day as its too much you can go to local cab who will help fill it out or you could ask hv good luck my sn group and social worker friend helped me so might be best to ahve someone who is aware of the forms to help as they are scary and repetitive x

i give up with my typos not apologising anymore lol

how old is your dd?

Hi Buckets and bubblagirl,

DD is 2.11, and I only realised that she was so behind in September, when the preschool approached me. She was swiftly assessed for full 1:1 during sessions, and then she had falls, resulting in a hospital admission, which bumped her into view of a great consultant, who fortunately would have dealt with her eventually through the educational route.

I am not seeing the consultant until Feb now, but I suppose we will have contact eventually when the referrals get through for SALT, OT & Physio. Perhaps they can assess and advise also. The HV was not much use, to be honest.

ther enot to my knowledge either much use in sn awareness as most of the time you get the just being lazy comments

my ds was dx at 3 its hard and the wait to get there is hard but best thing is just to keep fighting and keep on at the proffessionals too if you ahvent heard from them in few weeks chase them at all times as from my ds being dx i have had huge fights getting what he needs but just ahd tom keep fighting

dla is worth applying for and if you get awarded middle or high rate you can apply for carers allowance

its not easy time especially as there so young you still have the normal toddler behaviour to contend with and hard to know what is what at times but this board has been life saver for me have had so much support help and advise would be lost without it

not many poeple in rl understand what im doing from day to day see my ds problems and miniscule not seeing what i have to contend with at times but on here its great as get lots of virtual hugs but most of all someone to talk to who understands xx

Best thing is to do the research online about what you need/want/is available then if you need a referral from HV (eg portage? don't know much about it myself), tell her rather than ask. If that's all you need from her, you can just say no thanks if she keeps wanting to visit.

I know what you mean Bubbla, my DS is very highfunctionning and when people ask exactly what he does/doesn't do it's really hard to describe all the little things. It's very much a 'walk a mile in my shoes' thing isn't it, that's why this board is so good. RL people are always nice but I'm sure many of them can't see the problem or think I'm over the top / making excuses for poor parenting.

How are things today? A bit better, I hope x

Thanks for asking. Not too bad today.

Last night DD was up on and off between 2.15 and 4.30 because she had decided that "Millie wake up, now" DH went through for about 20 mins, then I went through for 25 mins, then convinced her to go to sleep by threatening to remove her plastic straws (latest obsession). She then called out at the door for another 15 mins, but settled, then again at about 4.15.

Took DH to work, and DD had a complete meltdown because she didn't want to go back in the house before preschool. Fortunately my parents live only 1 mile away, so I phoned them and said we were coming for a visit.

But on the way out of preschool I had almost 15mo DD2 in my arms, and had foolishly thought "oh the car park is onsite, no need for the strap..." and DD broke away and ran across a field, so cue chasing and convincing her to get up when she had fallen. Lots of cars leaving the preschool, so got to car, but keys in wrong pocket, and couldn't risk letting go of DD long enough to switch arms for DD2, so stuck. Ridiculous! Fortunately my very good friend was walking past and saw my predicament, so took the keys out of my pocket and helped DD1 into the car whilst I did DD2.

But DD2 slept while DD1 was at preschool, so I also had a nap, and DD1 is in a good mood, so that helps. Silver linings, and all

CT scan at 17.20.

Hope your days are all well. I really do appreciate you asking.