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

Fio - PMSL at 'holland (er)' making you feel sick .

Please put in something that SENCOs, however well meaning and trained cannot give a diagnosis.

It may well be a good idea to follow their recomendation if they tell you to push for a consultation with an Ed Psych/ Other medic who can give the Dx, but the SENCO cant diagnose, or for that matter tell you that there is nothing wrong. they are not qualified to do so.

When you go for a statment, however bleak it is to lay all the bad stuff on the line, and however much you don't want to see you beloved child decribed in such negative ways, grit your teeth and do it. That way you might get the help that you both need.

Targets on statemnets have to be SMART. Shite like, 'Must try to behave' is useless, patronising , frustating and pointless!

I'd be really disappointed if you just focused on ADHD and ASD - there children I know of who have not been diagnosed with things like cerebral palsy until well into toddlerhood. I know you can't cover every single type of SN but there is certainly more too it than just Autism and ADHD. will post more later with ideas but have two very niggly hungry toddlers here!

Have only skimmed thread, so will probably be repeating loads.

Getting a diagnosis will be hard. Apparently, it's not on to "label" children (even though this is the only way to get appropriate help). I noticed there was soething up with dd from around 7 months (possible earlier). she was diagnosed asd at 2.8. In between, I had lots of people looking at her and saying "but she's lovely", almost i nastonishment. How could I think there was something wrong wih the lovely baby in front of them. People still say "but she's lovely" - I now ask them why the "but" is in there.

Most of the time, the only way to get any help for your child is by being the parent who asks loudest. Not necessarily in a stroppy manner (although this can help), but being the person who phones to check an appointment has been made, then phones again when it hasn't. and then phones agin to check when it will be made, and so on.

In the pre-diagnosis time (when everyone is amazed that you think there is something wrong wiht your child) you will feel alone. You are having what appears to be unacceptable thoughts about your child (ie not perfect) and the health professionals are seeing nothing wrong. This can lead you to question yourself. I was assessed time and again for PND when I took dd1 to the clinic saying htere was something wrong with her. I think if I had stayed in that area, I would have ended up being assessed for munchausen's, as the health visitors really did see nothing wrong with dd1.

god I completely agree about labelling. When I was telling GP how concerned I was about DS having been waiting for specialist appointments for a year I got a lecture about not labelling.[hmmm].

There seems to be an insidious myth that paediatricians are desperate to label children with conditions such as ASD for the fun of it, and that one should be wary and dismissive of any other child or health professionals who suggest a referral. Whereas the sad truth is children are far more likely to suffer from needing appointments, diagnosis and help and not getting them in a timely fashion, than from having a possibly unnecessary paed/salt appointment.

Jenkeywoo good post.

a ragbag of other points:-

1.as other ladies have said, don't overlook SN such as Cerebral Palsy or others that involve mainly physical impairment.

2.I think one of thing that many of us have in common when it becomes clear our kids may have SN, is that it's like the rug is pulled from under you - your assumptions and hopes for your child's future life (moving out of home, career, marriage etc) that you haven't really questionied, are suddenly all up in the air.

3.Toilet training. Can be a particularly contentious area as people can end up under pressure from family and nursery, or for the very unlucky, even from health professionals, even where the child's SN hinders developing continence/awareness. DDA should however prevent children from being excluded from m/s settings due to continence problems.

1. In many areas parents do not need HV or GP to permit referral for speech therapy - so always worth phoning up to find out if that applies if you have concerns about your child's speech.

1. Which leads on to 5. There are massive variations across UK in standards of help available and length of waiting lists. Some areas have portage and specialist HVs and good early intervention programmes. Some offer very little help.

1. The stress of looking for mainstream schools for a child with SN. It's horrible having to emphasise your kid's problems and quiz teachers/sencos as to the kind of support available, just to get a feel for whether the school will be a suitable place.

oh I have even more to witter on re:social impact of realising your child has SN

1. as previously mentioned, the friends who try and be positive and so end up making you feel they think you are a negative nutter for thinking anything is amiss.

1. difficulties with the usual bitch and titch circuit; if your child is differing from NT, then you feel they are not seen as ideal playdate material, so parents aren't as keen to cultivate friendships.

1. difficulties with insensitive friends; e.g. those who proudly thrust their PFB's achievements in your face. It can be painful and obvious enough when your children's contemporaries are outstripping them, or even worse, when younger children are outstripping yours. e.g no, I don't want to compare toilet training problems when your child is literally half the age of mine, thank you.

1. sometimes friends without children can be surprisingly supportive. you get understanding and compassion in the unlikeliest of places.

Just wanted to echo what others have said about pushing for referrals and diagnosis.

Also (don't know if it's been mentioned) the importance of community peadiatricians if you have more than a couple of medics involved. The problem is you may not be offerred one and may have to ask. It was upon seeing the consultant comm pead that we were finally referred to the right person and got our diagnosis at 4yrs old.

The other thing that worked for us was at his frequent hospital appointments I would ask to see the consultant afterwards if I felt all of my questions had not been answered properly.

Also availability of services can vary so much from region to region, my ds went for nine months with no SALT last year due to lack of provision, despite him having a severe speech delay, being deaf and having a cleft palate. When things like this happen don't be afraid to complain and create a bit of a fuss.

Oh and if your child has to have frequent invasive medical intervention don't forget to ask for a play specialist to be available to help.

Sorry is a bit of a garble - I still get nervous about posting on special needs! You are all very knowledgable and I am a still a newbie.

I agree that it would be much better to have something about the more physical disabilities rather than just ASD, ADHD etc. I know there won't be room for every single type of SN but the number of people on the SN board with experience of things like CP and DS means there must surely be a demand for more info about them.

Oh definitely don't be afraid to complain if you have reason to. Last year we were booked for a dev check for dd1 (actually, we had to chase the appt, as the promised "oh it'll come through in good time" did not happen). Dh took the day off work, as it's easier to have 2 of us there. We got to the appt, to be told by the paed that she was not qualified to do the checks we were there for. The clinic had known htis for 2 weeks but not bothered to tell us. Not only was it a waste of our time, but it was also a wasted appt that coud have gone to someone else. we complained, and actually got referred on (prob just to get rid of us ) to the clinic that then diagnosed asd.

Each time we have dared to complain (mostly nicely) we have ended up with a better service. It seems that the standard service is to provide not much, and only kick in to gear if the parents then make a fuss. Sad, but true for our area (Kent)

Perhaps there are some arguments either way for going into the specifics of some types of SN - most of the readers won't have a child with SN, but it might be possible to de-bunk some of the more annoying myths by doing so. Against that, there are, numerically speaking, lots of children who have rare SNs rather than ASD or DS or CP, its'just that their parents talk about it in more specialised forums.

I'm not so keen on lots of advice about self-diagnosis 0either in such a general book about parenting - my DS would come out as likely to have an ASD in all of the DIY tests, but I'm pretty certain he's NT, and these are effects of his VI instead. It also makes you feel more lonely when there are so many things set up for the more common SNs and bog all for whatever your LO's got. I do agree about following your instincts and having to be very tenacious to get support/ services.

I agree with Crimplene, I think it would be better not to provide advice about self-diagnosis. If you do go down that route, I think it would be best if any advice was vetted by a developmental paediatrician.

Milestones are there for a reason - you don't get one month old babies running round the garden or three month olds chatting in paragraphs. So it should not be seen as normal for a child to show no signs of walking or talking at an age when it would be expected. You get variation either side of the milestone but not enormous differences.

As it;s a toddler book I'd also say that it is perfectly normal when you have a child with (any) SN to come out of NT toddler groups and feel sick and awful and more upset than you were when went in.

If you feel like that, give yourself a break and don't go.

(and if you ask the local rag to run an article saying that you're hosting a coffee morning for parents of kids with disabilities you'll be overrun!)

god yes yurt! so at the same time as feeling desperate to escape the m & t groups, the health professionals are likely to recommend you go to toddler groups like a magic bullet cure for social/communication problems, adding to the guilt even further.

Agree with Jenkeywoo Although I have an ASD DS, I don't want to live in an autism bubble, I fin d it very educational to learn about all the other kinds of SN - how they are seen by parents, the problems getting help and diagnosis etc

and this talk of "groups" leads me onto several points:-

1)difficulties in attending mainstream groups when your kid has SN. I feel far more comfortable going to Surestart type groups, where their remit is for inclusion, and workers should have some basic awareness of SN, than to the privately run jojingles etc type groups. And I would not feel comfortable with leaving DS at a say dance class unless the teacher had experience of kids with communication problems.

2)in my area finding out about groups/activities suitable for kids with SN seems to be by happy coincidence, rather than there being a central point/website with this sort of highly useful info. When I have asked all sorts of professionals - HV, child psych for advice about groups they have tended to look rather blankly at me...

I wouldn't go to Mother and Child classes now but I must admit I was so lacking in knowledge about child development that I had no idea DS1 was ASD until he was at least 22 months and although I saw some differences with other toddlers at the group, I didn't realise how significant they were. DS2 has been a revelation!

This is fantastic, I am going to try and tease out a structure from this thread

I agree I will stick to the affect on parents / family / friends - what you might feel - how to get help - how to cope

rather than "signs of autism..." etc

keep 'em coming

See I was TERRIFIED of coming on the SN boards and you have all been AMAZING

What's DDA?

Do SENCOs work with toddlers or just kick in for school-aged children?

There are lots of things here I haven't heard of:

eg.g.

Community paed
Play specialist

Do you think a list of Useful People In The System might be a good idea? Who would they be?