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

Right I am slowly getting this together

I would like to end the chapter on a positive note - without sounding glib - how do I do that?

And any suggestions for lightening it up a bit? I don't want it to be all doom

My friend (that I hadn't seen for 4 years) visited last year. She's always been lovely (and supportive in a matter of fact way) about ds1 and after watching him for a while said "well you know your life is always going to be interesting"

Which I thought summed it up pretty well.

HMM I dunno

interesting sounds like "Bad but varied"

It's the sort of thing my mother says about my appearance

It is a life changing experience and you cannot plan for the future the way other parents can or think they can. It is strange to hear 'mothers to be' talking confidently about the 'right nursery' and the 'right school' that the unborn child is going to go to. In their minds, it is an absolute certainty that what they are planning will happen. With an SN child, you have no option other than to think 'sufficient unto the day are the evils therof' and it can be surprisingly liberating.

Well a lot of it is bad tbh. Being housebound in holidays, having to constantly plan, trying to juggle siblings in the midst of all this. Years and years of lack of sleep. Fighting for services. And so it goes on. In many cases there are no conventional happy endings - it's not a case of Holland rather than Italy for us.

But ultimately you have a child who you love just like your other children and you adapt and your life is very different than expected, almost certainly a lot harder than you expected but it can lead to new careers, new ways of looking at things and an understanding of what really matters in life.

If you say 'oh but life's really great with with a child with SN' you're going to piss off the ones really struggling. If you say 'life's really shit with a disabled child' you come close to sounding like Julia Hollander and missing the point that however difficult the day to day is you still have a child you love.

It's hard, bloody hard, but if life is about experiences (and I think it is) then you can make the most of that. And that can be challenging, difficult, rewarding but also interesting.

agree cybers. With ds1's diagnosis I lost the luxury of certainty (for any of my children I remember the years spent analysing ds2 and ds3's development). But on the other hand my younger 2 will never come under fuss about things like GCSE's or doing something that's expected of them or of living up to our expectations. They'll be able to go whatever they choose, and hopefully they'll realise what a great gift that is.

But you did remind about all the day to day planning ( a great evil) that you have to do. You can't be as spontaneous as those with only normal children.

I also strongly agree with cybers. That there is so much that you take for granted as a naive first time mum, then suddenly your assumptions get completely thrown out the window. That if DS was able as an adult to live independently in a bedsit and work happily at a minimum wage job I would be thrilled.

cyber says she has found it suprinsingly liberating, this has definitely not been my case (please don't take offence).

I still have high expectations for DS, I know he will never be a neurosurgeon, but within his limitations I want him to be the absolute best he can be. I think maybe I am a pushy mum , and I push DS just as I would if he didn't have problems (possibly more so).

Probably if he had a more severe neurological condition I would feel differently? I really don't know, but although he has the tiniest concentration, only speaks in single words at 3.2yrs, has a weak right side, has all sorts of motor problems and cannot pulls his pants up I still believe he will be reading shakespeare, speaking spanish (my mother tongue) as well as english, riding a bike, learning to surf and (the list goes on...).

DS has taught me to be immensely patient (not at all a quality I was born with), he has taught me that it is a waste of time to worry about trivial things (which I used to), that all the little things we have in life that we take for granted are what make life wonderful, he has taught me to never give up and believe me, there are days when I am pulling my hair and not sleeping but then he gives me a big smile and I pull myself together (with the help of some chocolate as well).

I think the most positive thing is finding that I love him more, and more fiercely and protectively, because he's not been given the means to protect himself. I feel a bit like a mother tigress with a wounded cub - come near my wounded cub or do him harm, and I'll pounce! In my mind, he's been given autism, but he's also been given a bolshy, feisty, aggressive mum who will fight every inch to get him what he needs! My DH actually says now that he would not remove the autism, if he had a magic wand, as it's so much a part of our DS.

Agree with yurt1 about the new way of looking at things and understanding what really matters. And with cyberseraphim about it being surprisingly liberating.

It takes parenting right back to basics. It makes you appreciate the really ordinary things and you don't sweat the small stuff (well not so much!).

I took my dd1 to a museum the other day. When we got back my MIL asked which bit was best. "Being able to walk around a museum holding dd1's hand" was my reply. It's as simple as that.

I also think the connections you make with people in similar circumstances are not only life-saving at times but life-enhancing.

And tiny kindnesses and acceptances mean so so much. My dh had an acquaintance round for dinner the other night. he ended up reading dd1 some books and spending some time with her. he didn't understand her signs but they communicated. As he was leaving he said 'it has been a great honour to spend time with your daughter this evening'.

have no idea how you translate any of that into a coherent 'upbeat' ending. But there are true positives to having a child with SN.

sorry Tiny, I know that what i said was one of those phrases that could be meaningful in some sense but could well be complete rubbish too

cyber, rubbish?? Goodness no, what you said is not at all rubbish, I can completely understand what you meant and it makes a lot of sense, it just hasn't been MY case, it hasn't been liberating for me. Maybe because I am still hoping for a miracle!

Only just seen this thread & have only skimmed through. As someone with a toddler who has SN (and a lot of appointments) I would have loved to have been prepared for/read about:

Choices I can make re: venues for consultations with health professionals (eg until I pressed for alternative options I didn't know that DD could go to local hospital eye clinic to get the same service offered at Moorfields, a longer journey)
Geting home visits
Getting emotional support for the non-SN sibling
Getting emotional support for me/DH
What all the different specialisms are and how many sessions will we get with each therapist
Early support and keyworking scheme
How I can meet other parents with children who also have no diagnosis and similar issues (no drop-ins in my area)
many more but got to go

Should I write Special Needs or special needs?

Arabica: Your points are all really good and helpful to know, but I think they are a little outside the scope we can offer

OK I am adding this box at the end - what else do I need to include in it?

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A SN List for of things to Google (or to come and ask about on Mumsnet)

The following list is a selection of things that you might want to research further. Some of the following may be applicable to your situation. Make sure you are aware of what you can and cannot claim for, and what is available to make your life easier.

ABA (Applied Behaviour Analysis)
Biomedical approach (for children with SN)
Blue badges (Parking Benefits scheme)
Carer?s Allowance
Council tax rebates
DFG (Disabled Facilities Grants)
Direct Payments for Disabled Children and Young People
Disabled parking spaces outside houses
DLA (Disability Living Allowance)
Exit Passes (for fast-tracking of SN children at tourist attractions etc.)
Free or reduce price entries for tourist attractions
Higher Rate (Mobility Component) of DLA
Insulation Grants (for homes with disabled children)
PECS (Picture Exchange Communication System)
Portage
Respite
The importance of putting SALT in parts 2 and 3 of the statement
Water meter cap (for homes with disabled children)

Places to go for support:

Face2Face Network
Homestart
IPSEA (Independent Panel for Special Education Advice)
National Autistic Society
Portage
Social Services

www.earlysupport.org.uk has some useful pamphets that can be ordered or downloaded, and a family support pack (with lots of pamphlets and places to keep notes). In theory these are now given at diagnosis, but as as a diffinative diagnosis may never happen, or take years, knowing where to order from may be helpful.
The things I wish I had known when Ds was a toddler was the importance of trusting my gut feelings (I am my childs expert!) and persistance! Often parents know very early on that something is different, but either get ignored or subjected to the 'wait and see, he's a boy - might catch up' approach which can delay help and interventions that could have been helpful! Respect and work with professionals but you most probably need to push quite hard to get what you child needs. HTH

Thanks Magso

I found this quote on another thread which made me snort:

TeeJaye:
Having a child with special needs can have its advantages; one of them I find is not having to queue to use rides in playgrounds, because one excited scream from my son sends all the kids running!

www.steps-charity.org.uk/ (for talipes and other orthopaedic problems)

www.ican.org.uk (for speech/communication info and advice)

www.adders.org (online ADD/ADHD support group)

I can understand the 'liberating' bit. Of course having ds brings its own worries and fears, but they don't include the possibility of him smoking/joyriding/taking drugs/mugging old ladies etc etc. There are so many things about dd's life as an NT almost-teenager that I'm having to worry about (internet safety, the secondary school lottery fiasco, walking home from school by herself aargh!) that will most likely pass me by when ds gets to that age.

I am not sure if you are going to mention BIBIC? www.bibic.org.uk
I think they have been helpful to some people.

please don't forget conductive education

please don't forget conductive education

could you explain a little more

info about Conductive Education here:-

www.rainbowcentre.org/rainbowcentre.asp

2shoes will know more than me, but it's therapies to help children with physical disabilities that affect their movements.

a useful site for people without diagnosis