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

I'm still very much in the toddler stage with DS4 so am happy if you want to CAT me and ask me anything, and I do mean anything I am happy to talk about DS4 who has SN but no diagnosis.

DS4 was very different from my others from the word go and I believe the fact that he was my fourth, and, unlike my others I'd had a tricky last week of pregnancy with him we were quick to realise all was not well and sought expert opinions very early on.

What I'm finding hard at the moment is that due to his developmental delay the toddler stage (which though charming can be frustrating at the best of times) is ddrrraaaagggggging on for ever, and fourth time around it's starting to take it's toll.

I've seen a lot of posts where people have said things like "I don't think my child is autistic because he is affectionate/has good eye contact/is bright etc". It would be nice if there was something in the autism section which explained that none of those things necessarily rules out autism.

At the same time just because a child likes to line things up or likes to spin round in circles it doesn't necessarily indicate autism.

yes Fio is dead on the money as usual

obv she has drunk less than me

but I was told it was all okay for ages and thought i was going mad

ask for referral to child development centre

tell HVs to feck off

it does make you sad thinking back

I tell you what I wish I knew that dd1 would turn out so bloody lovely (not so bloody minded however ) when she was 1

I was told by my paediatrician that one of the early signs of autism is a lack of pointing to "share attention" - eg when your child points at a plane, then looks at you to check you have also seen it and to share attention. Another very early sign is lack of eye contact when someone talks to them. And another sign is that the child will see the adult's hand as a "tool" to do something - eg they will take your hand and put it on a packet of crisps to get you to open it, as it does not occur to them that verbalising would get you to open it. As part of a GP's test for autism, they will often point at something the other side of the room and see if the child follows the point. I think it is called a CHAT test, and you can find it on internet. The other sign of autism is of course lack of speech , but it sort of has to be accompanied by lack of a "desire/need to commumicate" (for instance, a child with speech delay but no autism will have found other ways to communicate, eg gesture, or eye contact, or pointing or even made up a new language etc). An autistic child may have no desire or need to communicate and will often be described as "in their own world". All this I have been through myself with my autistic DS. One other big signpost is repetitive play, lining toys up or "stimming" (short for self-stimulatory movements) which is when a kid will bounce up and down or hand flap/rock manically for no apparent reason. Hope that helps! Good luck, it sounds a great project!

don't forget conductive education in your list. was a life saver for us. as it was something we could "do" to help dd.

also I remeber the greif like Cappuccino it was a long time ago. but that is one thing I wish I had known about. I just thought I was loosing it and giving up on dd.
I mean it can't be normal to get upset watching the little girl next door playing in her garden..
It was only latter I found a wonderful book and the greiving process was mentioned that I realised it was normal.

What's been most useful to us is speaking to people with older kids with the same as dd3. Someone that can tell me about their child rather than a doctor reeling off a list of facts. Support groups need a mention. My friends are great but they really don't know what we are going through.

also be warned that you can think really nasty things about your child

about not wanting them/ they have ruined your plans

it is normal and does not mean you are Bad

Just to confirm that if there is any mention of Holland/Shmolland then I for one will bring DD1 down to mumsnet towers to eat your desk. I rather like Holland, as it goes. SN is absolutely nothing like it.

Thoughts of the top of my head .... eek ...

Be prepared for friends and relations to let you down when you need them most.

Grandparents are as upset by the possibility there is a problem as you are. But they have the luxury of being far enough away that - particularly with conditions like ASD - they can pretend there's no problem. Would they rather think you were a bad parent or their beloved grandchild was disabled? It's just human nature to go with the most painless option, but it means you'll be undermined by your own mother when you least expect it.

Friends have two problems:

Firstly, the natural tendancy amongst parents to be reassuring: "oh, it's OK, little Jack does that all the time". It's comforting if you are talking about licking the window to see how it tastes. It's not comforting if you are talking about standing licking the window for hours and hours - in fact you will feel belittled and possibly want to kill them, but until you have an SN child yourself you don't realise the difference.

Secondly, there's still a huge taboo/embarassment around Special Needs. You won't see it any more, because your child is still just a child who now (hopefully) happens to have a diagnosis. But to them, however tactful they are, a tragedy has happened and your baby has turned into a freak. Good friends will get over this and quickly move into the same space as you. Bad ones won't. But again, the initial reaction is just human nature and generally leads to a period where no-one speaks to you for fear of saying the wrong thing. Keep talking to the good friends and educate them gently.

Other key things: there is a huge amount of advice and moral support (if not practical support) out there. It's mostly unofficial like this forum and no-one in the official agencies will point you this way. But this is where you learn about DLA, Portage, SALT, statementing, AFOs, DAFOs etc. etc. Jump into a relevant forum as soon as you can bear to.
What else: oh do not be fobbed off by the ignorant (usually social workers and health visitors, training seems a bit patchy in those professions) wittering on about the perils of "labelling" your child, as if this was somehow going to wreck their life. I don't know what poisonous little political weasel thought that one up to save money, but it's bollox. It's not a "label" it's a "diagnosis" and a diagnosis is the gateway to therapy and services which can change your child's life.

I also agree with trusting your instincts. Also, there is such a big element of self doubt when you start questioning if there is something atypical about your child. It is normal to feel guilty and one of the things that always niggled me, was whether he really did have a problem or was it my imagination. sometimes he would be unmanageable then maybe he would have days when I could think maybe he was NT. It was a big relief for me when I found out that was normal and his problems weren't somethign that I was projecting.

It's also really important to know where to go for help, I agree. A lot of support that is available such as DLA and social services support I would never have known about if it wasn't for mn.

Oh that reassurance thing drives me up the wall too! I get people saying 'oh he doesn't seem that bad' when they haven't ever been called into school to clear up the poo that he has spread all over the place. Or the best one was a guy who said he thought his toddler might have dyspraxia too, the toddler that was 3 years younger than ds and could outrun him and pin him down!

"a tragedy has happened and your baby has turned into a freak"

you might well feel this yourself as well

not everyone thinks "oh my little baby s/he is perfect just the way she is"

you may well be really freaked out

and if you are it will sort itself eventually and you will love them

For me, the best way of teaching my autistic child how to speak has been ABA = applied behavioural analysis. It sounds complicated but it isn't - example, our ABA tutors got my DS to say his first word (badly pronounced, but who cares) by waiting with a big grin on their face to push him on a swing, then prompting him to say "push" , then eventually dropping the prompt and he would say "pu" of his own accord when he wanted a big push on the swing. Sorry, you are going to end up with way too much info.!

Agree totally with r3dh3d. Epsecially about some family members preferring to think of you as a bad parent than a child as disabled. If they have real problems with the dx they can manage that even when the child is a non-verbal almost 9 year old who requires constant supervision

And bloody Holland. Please don't take that tack

Agree with CT- affection - nothing to do with autism. My severely autistic son is, if anything, over affectionate. He has great eye contact too.

my DS is totally affectionate, always kissing and hugging. Think the thing about autistic kids not showing affection may be a myth or just a stereotype. One of my ABA tutors works with 20 ASD boys and says every single one is affectionate!

I agree that there should be a asd section. My ds1 has aspergers syndrome(dx at nearly 4 yrs) and the specific to asd thing he did before he was 2 was never pointing or waving - as he was my first I had no clue that this should happen and thought nothing of it. All the things like not playing with peers/insistence on routine/ lining up cars and so on were dismissed by me because lots of other 2yrolds are the same.
However, googling and then the paed that the HV referred us to did pick up on the reversal of pronouns and echolalia(started when he started to speak and he is only starting to use pronouns correctly at 6) as something unusual(if it is prolonged) and quite particular to asd.Also the extent of his obsessions - spending most if not all of playgroup sessions in the toilets because he loved toilets/running away in shops, but only to get to the toilets, being able to be bribed with the promise of visiting the shopping centre toilets!
My ds1 is affectionate, has great eye contact with family and has had limited imaginative play at some points - this does not preclude a dx of asd - you just have to tick some boxes across each section of the triad of impairments.
The dx was like a brief period of mourning for me - for the future I thought he would have - and then a slow realisation that he probably would have it -just differently.This was combined with extreme panic about getting the right help for him and just understanding my son - so a list of other websites/books would be very helpful.
I think Yurt recently said that you might not know what is different about your child at this point, but you do know they are harder work than your friend's children. I would heartily agree with that point.
My ds1 has a mild condition in the scheme of things, but it has a big impact on his life and ours and I would say an early dx was crucial to him getting help, settling into school and most importantly being accepted and reasonably happy.

oh wow there is so much here

thanks so much

I will have a proper read through tonight

THANK YOU

Fio is spot on about the labelling thing- and I think that goes for all kinds of SN. There have been times when I've felt like telling the doctor I'd be happy for dd to have her diagnosis tattooed to her forehead if only it meant we could get some BLOODY HELP!!!

Ffs when a patient comes into A&E with a broken leg or a heart attack, they don't refuse to diagnose them for fear of labelling them.

I would definitely say something on the lines of:

parents of SN children are sometimes made to feel guilty about pushing for a diagnosis, as if they were somehow "making" the child disabled. This is nonsense- a parent who fights to get her child the help he or she needs to lead the best possible life is doing a parent's job. That's what we're there for!