Mumsnet Book on Toddler: Special Needs information

[morningpaper]

Hello all,

As you probably know, MNHQ has tasked me with editing a Mumsnet Guide to Toddlers.

In this book we want to have a section on Special Needs, with paragraphs on:

• What are the signs?
• Autism
• ADHD
• Coming to terms with diagnosis
• Special issues with coping with a SN toddler

Most of the books on the market seem to contain this information, and they do seem to be common questions.

I'd be grateful for your thoughts on this section because I have no knowledge of these areas and I feel rather like I've been asked to write a few paragraphs on horse-racing. And to be blunt I really don't want people to feel as though I am mis-representing their advice.

I'd be grateful for your thoughts on what sort of advice you think would be appropriate and useful.

If you've got ANY questions about ANY aspect of this, please ask, or CAT me.

MP X

What's VI?

VI is visual impairment - my DS is partially sighted but it covers blindness as well.

Useful people sounds good. For us a very important person has been:

O.T. (occupational therapist)- can be absolutely invaluable in evaluating child's day to day situation and coming up with practical solutions to physical problems

also the physio, who not only teaches strengthening exercises, but also useful tricks like how to negotiate stairs when you're on crutches (our trips to A&E have been cut dramatically)

DDA is the Disability Discrimination Act.

Nurseries also have Sencos.

People in the system (not exhaustive!)

(speech and language therapists (SALT) - deal with much more than speech - other areas they deal with are eating/swallowing, pre-language communication, alternative communication (ranging from Pecs and makaton/sign to computerised aids/switches)

occupational therapists - don't know too much about these, know they deal with sensory problems and dyspraxia type problems

physiotherapists

educational psychologist (advise about school placement/support in school)

genetic counsellor/geneticists (depending on the type of SN, geneticists may be involved in looking for a diagnosis, and genetic counsellor may be involved in planning further children).

social workers can be involved in helping with respite care etc.

orthotists (?sp) with some physical problems, kids may need special footwear and or splints - orthotics department would make and issue them
problems.

Been thinking about this a bit. I think it would be wrong to put a special needs section under health. Because for the most part I think the issues that get picked up at this stage are more likely to be developmental. Even with something like CP you are more likely to notice something is wrong from a development point of view (i.e not crawling/walking).

And a lot of the stuff that would be important to include seems to be the how to cope stuff not really the medical stuff.

I think I would start with a section something like
'I'm worried things are not quite right with my child' which could cover all the stuff about trusting your gut instincts and how to go about getting a diagnosis or at least some proper assessments. Could even include some autism 'red flag' stuff here.

Then it could move on to the 'how to cope' bit including common experiences and feelings i.e the grieving for the child you thought you were going to have etc and the stuff about telling other people and the avoiding normal toddler groups etc if they are too hard.

The next section could be more practical. Brief overview of therapies that might help (Physio. SALT, OT, dietry, ABA etc). And suggested resources and places to seek out advice/help. Plus advice on benefits etc.

Totalchaos - I tried to get funding a few years ago for a website that would include all that kind of info about local groups and resources etc. I was told there wasn't any need for it..... fuckwits.

/hijack in response to HITC. No need for it, my arse! in an ideal world, HVs would know this sort of stuff, however.......

Oh there are many things HV's would know in an ideal world - like anything about child development . But I digress.

I think a lot of parenting books put special needs in the health section and it just seem odd to me to have Cerebral Palsy and autism shoved in next to Chicken Pox and Ear ache.

I agree heart re. placement

HITC - the structure looks good.

You get two extra types of specialist with VIs: QTVIs who are teachers specialising in children with VIs - as they're very big on early intervention with VIs they seem to do a huge amount with toddlers. You also get mobility officers or rehab officers (a bit like an OT who teach things like using canes), or rather you don't as there are so few of them and they are the bane of many parents lives as so few know how to work with children as they mostly work with OAPs. I guess there would be other types of specialist for with other SNs.

I keep thinking that a real biggie in this age group is the lack of suitable childcare for toddlers with SN - this is also the stage where you find yourself filling out the forms for carer's allowance and ditching your hopes of combining your fabulous career with motherhood.

ok, have had a quick skim through here and there are loads of good ideas.

Here's some things that would have helped me out a year ago when dd was first diagnosed - 1) a list of all the people you might encounter and what they do - eg - orthotist, community paed etc.
2) links to places you might find support eg: homestart, face2face network, portage (reminder that you can self refer to all of these organisations)
3) info on benefits out there that may apply (DLA, carers allowance etc) and where to get help to fill in the forms etc.
4) other 'perks' (I use that with a sense of irony...) eg: it was a lifesaver when someone here told me that you can often get into attraction like zoos etc for free or reduced price if you're caring for a disabled child. It's not always advertised so always good to ask. Also that in some circumstances you can apply for a disabled parking blue badge (from birth for certain specific conditions requiring bukly equipment and from 2 for those with mobility problems).

Loads of great ideas here.

Totally agree w Crimplene. If you have an NT child, you have the option to put them in a paid nursery 8-6 and go back to work before your mat leave runs out. If you have an SN child, you don't. But they don't extend your mat leave, they terminate your employment. Right to return to work meaningless with many SNs.

Another thought - to set reasonable expectations of medical professionals. If you're facing anything remotely out of the usual, GP's can't spell it and HVs have never heard of it. The best bet is to read up enough to convince them you know more than they do - they'll refer you up the food chain to a specialist soon enough in that case. Even the specialists only know about the cases they have seen, often at the point of diagnosis rather than through life which is why their predictions can be over-gloomy or over-optimistic. With unusual conditions, take what they tell you as opinion only and accept they probably can't tell you where you are going - however much they feel obliged to give you that impression.

r3dh3d - don't get me started on 'professionals' my toes curl when anyone describes themselves as a 'professional' instead of by their job title. You get good ones who are wonderful, but who the good one is for you varies according to the individuals, not the role. So many of them seem to be defending some very scant knowledge or experience of the issues you're dealing with. I wish they'd just fess up when they don't know instead of getting creative or defensive, or even occasionally agressive.

You need to hook up with other parents locally or virtually.

Things I've learned from other parents:

1. IPSEA (for advice on all things to do with education 2)DFG (disabled facilities grants
2. ABA
3. the typing method we're using with ds1
4. PECS
5. Portage
6. direct payments
7. DLA
8. Blue badges and higher rate mobility
9. Exit passes
10. council tax rebate
11. Disabled parking spaces outside houses
12. Water meter cap for homes with disabled children (in some cases)
13. Free insulation for homes with disabled kids
14. The importance of putting SALT in parts 2 and 3 of the statement
15. Biomed
16. Respite

I haven't followed up on all of those - but a lot have been life changing . Thinking about it I've learned bugger all from pros. It's all come from parents. Getting in contact with other parents of SN kids (whether RL or virtual or a mix) makes such a big difference.

That was off the top of my head- there'll be loads more

Agree with Yurt about the lack of information about help/treatments accessible via the "system", so you end up finding out loads more on sites such as this.

Other areas you might want to cover:-

where SN is apparent from birth/very early on - which probably means that a child has spent time in SCBU and/or having to face depressing predictions from the medics early on

acceptance - as part of the feelings side of it eg. how you get used to looking at your child's progress within their own framework of abilities, rather than comparing to their age group, and in general.

This age group is where you have to get to grips with how the education system works - much earlier than for a child without SN. You can apply for a statement of SEN from age two and the system is so complex and obstructive that you need maximum lead-time to understand the situation with its local oddities and sort out something acceptable by the time your child is ready to start school. You're more likely to need to think about moving house and you need so much time to gather tips from other parents and sound out the possibilities. I think you should have a chunk on the education system.

It would be also useful to tell all parents that if they want to request a statement they should put it IN WRITING to the Head of SEN at their LEA. The letter need only be two lines: - "I would like to request a statutory assessment of my child for a statement of special educational needs. I am making this request under the 1996 Education Act." The reason for this is that if you do NOT put it in writing like this, they will fob you off for years ("dont worry yet dear, it's far too early, you may not need a statement, it's a lot of work, don't get him assessed too early as he may improve and you'll label him too early... etc etc "). The basic problem here is that the LEAs want to give out as few statements as possible and get as many kids as poss into the (cheaper, and far less effective) School Action plus system (or Early years action, or some other name like that). Whereas we as parents have an entirely different agenda: that is, to get our kids the help they need and the right school. I learned the hard way that parents and LEAs have totally different agendas, and would like to pass on this learning to other mums. You are going to have to fight to get a statement, and a statement is the only way in which you will get a legal right to extra help for your child (School Action Plus etc can be cancelled at the whim of your LEA at any time).

Please put something about the dangers of consulting doctor google. You have no idea how many times I have scared myself stupid!

If you have a chunk about education (and useful I think for a toddler book on SN) then you could get away with a reference to IPSEA for further information. They tell you how to get a statement etc and can support you in doing that. They're the education gods really.

I knew my DS wasn't "right" when he was about 11 months.
i don't know why or how i knew, there was nothing that sticks out in my mind. i just knew.

I spoke to my HV and was brushed off. "your a young mum" "it's your first child" "your just worrying over nothing"

But i knew. he just wasn't the same as other babies his age.

As he got a little older and he learned to walk life became one long shadowing session. i couldn't be any more than 2 feet from him at all times. he was agressive and would have violant outbursts for no apparant reason, then be happy as larry seconds later.

When i asked about the possibility of ADHD (i never in a million years thought it could be anything as "bad" as Autism) i was just laughed at. i was made to feel like the reactionary parent who was trying to excuse her poor parenting skills.

Thankfully however often i doubted myself i knew i was a good mum. My job had given me so much training in chellenging behaviour that i knew that i was dealing with him ok.

It took just 2 weeks in a nursary aged 23 months for them to call me in.
They said that they had somce concerns over ds and wanted to bring in an ed Psych.
The nursary manager told me, worried as to how i would react...she shouldn't have been. i was so relieved i cold have kissed her.

At last someone saw what i saw. finally someone agreed that Yes, there was something not quite right with DS.

that meeting started a very large, very slow moving ball rolling.
We are now some 5 years on, still only have vague diagnosis but it is aknowledged by all concerned that he does have difficulties on the autistic spectrum.

Those early days were probably the worst. i felt guilty that i was trying to convince people that there was something wrong with my son.
Of course all i wanted was for him to get teh help he needed, but i can see why some would bury their heads in the sand.

having a child with an "invisible" disablilty is incredibly hard..especially in the early years.

dd1 has down syndrome - one of the most common genetic conditions - I can give you info about this BUT want to stres what others have said...

If you think something is not quite right - speak up, seek help. If you are not happy about the treatment your child is receiving - again - speak up. If you do not advocate for them - who will.

Someone once told me x may be a cardiologist and specialist in that field BUT you have a PhD in dd1. You are the expert of your child.

Make contact with parents groups - we found that very helpful to talk with someone who got it - it being - to parent a child with sn - some of the common things that we as parents face regardless of the sn.

Do not be afraid to complain about crap service - you and your child deserve good quality care. If it is not up to scratch - they need to be told. I have found each time I have complained and offered suggestions for improvements - I have been listened too.

Sadly in order to get the DLA you are entitled to - you need to make things as bleak as possible. It hurts like hell to focus on all the negatives and difficulties as you tend to focus on all they have achieved and know how far they have come BUT unfortunately the 'hidden' formula seems to need a worse case scenario.

hth

Have just been reading the SN section in another toddler book.

Please please please do not put anything like this in:

A beautiful child: A child with special needs is a child to love, respect and celebrate as any other.

Most parents of children with special needs (whatever Julia Hollander would have the world believe) know this instinctively. They do not need to be reminded to love or celebrate their child any more than any other parent.

Anyone who doesn't feel like this isn't going to have their mind changed by a few words in a book.

So it is totally pointless and deeply patronising.

God that's dreadful HITC. Well done for pointing that out!

It does kind of suggest that you have given birth to a monster doesn't it