Do I accept help?

[MooMummyMoo]

I am on these boards for DD1 who is PMLD/global development delay/chromosome disorder.

My DD3 has always been a bit 'odd' and reading other people's threads on this board has given me suspicions about her (asd stuff). Anyhow, finally today the conversation with pre-school came. I knew it would but it has still knocked me a bit.

DD3 will be 3 next week. In some areas she is very high functioning - knew numbers 1-10 backwards and forwards by 18 months, whole alphabet upper and lower case by 2 - probably the most odd thing is that she is entirely self taught (alphabet was a machine thing we have that she spent hours and hours playing with). Current day she can read all numbers certainly up to 100, and is self teaching herself phonics with another toy we have.

On the other side of things, her speech is not great. Conversation skills even less great. Big 'tantrums' if things are wrong - banana taken out of skin at snack time today at pre school lead to massive breakdown.

Anyhoo. Don't want to go on about this just wanted to give a bit of background.

Preschool talked to me today as they would like to get someone in to see her at preschool and to help give them techniques to help her - how should they deal with the tantrum stuff, how much they should expect/force or not force her to join in certain activities (things generally are all on her terms currently!), and also what stuff educationally they should be doing (as she'll have exhausted their resources soon but still have a year to go)

However they were very much leaving it for my decision, as they said we can leave it and see how she goes for a while longer/ don't want to label her so young etc

So what do I do? Do I accept the help now? Do I risk slapping a label on her unnecessarily that will affect her later on?
Or am I silly to reject any help when it comes our way??

I am going round in circles here...

[Lifejustis]

Hi. My DS is nearly 3 and has a diagnosis of ASD. He attends a mainstream nursery. In my experience it has been hard to get nursery to help him even with a diagnosis. I've passed on the strategies suggested by professionals but nursery hasn't always implemented them. So I think its positive that your DD's nursery is offering help. Also if the nursery is proposing to bring in outside professionals you can ask to meet with them and discuss your concerns and the strategies they propose to help your DD. You can then decide if you want DD to be referred further.

I'm sure someone with more experience will share their experience here.

[senvet]

If you can get an assessment of your remarkable dd then I would take it.
There are people on these boards taking years to get help and primary school is not so long away.

I really liked the assessment reports that look at the different centiles of different parts of the brain.

Even if there is a diagnosis eg of ASD, the huge variation within that diagnosis makes it very unlike a label, more like a vague pointer. But a pointer that can help you and dc navigate the mainstream world with a bit more ease.

Good Luck

[MooMummyMoo]

Thank you both.

You both talk a lot of sense! I think I need to try to see this as a positive. I suppose from a selfish point of view I was quite happy with my head in the sand stance I was sporting :)

[MooMummyMoo]

Do you know what. I think I am actually scared of them labelling her and making it all real.

With DD1, she lay there in the cot at the hospital, just 10 days old, as the doctor started "I have some very bad news for you..." And suddenly my beautiful baby went from just being a bit small, not able to latch on and having some holes in her little heart, to being a child with a chromosome disorder and life long challenges ahead of her.

And I suppose that's what is happening here. DD3 will go from being my clever but very quirky one, to having a diagnosis which she has to live with forever.

I know they are the same children before and after any diagnosis but at the same time it changes everything. Absolutely everything. And to be honest, just breaks my heart.

Sorry to be self indulgent. Will get a grip before school drop off tomorrow, promise :)

[MooMummyMoo]

And thank you Polter. I will be positive tomorrow, I promise.

[LonnyVonnyWilsonFrickett]

Getting a dx for ds was the single worst day of my entire life. The day after that was the day when everything started getting better. Not all at once, not in a straight line, and I'm certainly not saying a day with a school meeting in it is ever a day with sunshine in it...

But getting a dx was like banging at a door for years, and then someone comes along and hands you a key. They don't tell you what to do with it mind you, you still have to work it out for yourself and often the lock is really bloody stiff. But suddenly doors made sense again.

What I'm saying in an incredibly long-winded way is, of course it's hard and you are allowed to be sad and upset. But getting help and/or a dx will help.

[Lifejustis]

Moo, just wanted to share my experience. DS is nearly 3, diagnosed with ASD and SPD few months ago, also speech delay. I had been concerned about his speech since he was 18 months but I was reassured by the professionals that he'll catch up. I became increasingly concerned about other issues last year and everytime I researched his traits, I came across ASD. As everyone kept saying "wait and see" we went to see a private developmental paediatrician. We had further assessments and DS was diagnosed privately. NHS then confirmed the diagnosis. Although getting the diagnosis is hard, it means that I now understand my little boy so much better. Whether DS got a diagnosis or not, he had ASD. Diagnosis has pointed me in the right direction to help DS. As devastating as the diagnosis was, it has really helped DS. Just as an example, nursery was complaining about some aspects of his behaviour prior to the diagnosis, however now they are more understanding and trying to help.

Hope you have a better day tomorrow

[senvet]

The thing for you and dc will be the ways that her brain performs in the minority, when the bulk-mainstream-majority assume that she performs like them.

That is their assumption, and they are wrong.

To help her navigate through a world of poor assumptions of the majority folk, you will need to understand the things that put her in the minority. If that is by way of a report with centiles for each of the brain-functions it may well help.

Hope this helps

[bedelia]

Moo I was in a similar position to you a few months ago with my youngest DS, just after he turned three. He'd been attending nursery for a few weeks when his teacher asked for a meeting to discuss how he'd been settling in. Having secretly thought she was going to tell me how well he was doing (similar abilities to your talented DD) I was utterly shocked to learn that he had so many difficulties and barely engaged with anyone.

When we had the conversation about referrals, the thing which stuck with me was that we could withdraw the "help" if it was no longer needed.

Honestly I would agree to the outside help now and get the ball rolling, especially if there is a "waiting list". It can only help DD in the long term and any future diagnosis will provide a map showing the best route to help her reach her potential

[AgnesDiPesto]

An interest in numbers, letters, patterns and amazing rote learning are red flags for asd, my ds did all of that at 2/3. In fact he loved vtech machines so much vtech was the first word he wrote - at 2. We thought we had a genius until he lost his speech at 2.3 and realised it was asd. Have you looked at MCHAT and scored it? I know it's hard but early help does make a big difference. She's clearly intelligent but might need help directing that to things society deems important - speaking, socialising, life skills rather than learning facts. My ds spends hours memorising people's doors, but it's not a useful skill.
He's still adorable, in fact much more so than the average 8 year old, everyone who gets to know him adores him because he's so quirky. He's a master at using his intelligence to get out of work though. Good luck whatever you decide. Some parents don't go the diagnosis route but use something like ABA at home, so even if you don't choose to formalise it you can still put interventions in place.

[MooMummyMoo]

Thank you everyone. She definitely learns a lot by rote. Can recite many books off by heart etc etc. vtech is also her favourite!!

So yes, you have all told me what I needed to know. I will get the help. A dx will probably help too if we can go down that route.

So thank you to you all. I can see what we need to do. Onwards and upwards x