Can we have an update from experienced parents?

[Bpeep]

Dear Mommies,
Just curious to know how your loved ones are doing now. Moms or parents who had posted thread earlier seeking suggestions for your then little ones, can you please write here how they are doing now. Let's say, who had posted threads five or ten years before for speech delay or developmental or for ASD.
Your update will help parents like us to choose the correct ways, if we have missed something.
Please tell us,

1.What was the concern you posted in mumsnet or on other forum.

1. How you kids are doing now?
2. Things that worked for you and

you suggest strongly to us.

1. Things that didn't work and strongly don't recommend to us.

I am talking to various people involved in my son's diagnosis for ASD. He is two and half year old. Things I recommend to moms like me are:

1. Don't go for wait and see approach, if you have any development concern in your child or if someone had brought up to you? Check with relevent professionals for advice.
2. Don't believe in boys are always late bloomers. In my case, my ds1 talked in complete sentences even before he was two and half. Ds2 is using single words and just started joining two words.
3. Keep talking to them whole day.

I was you guys many years ago and I used to post on and give advice to this part of MN quite a lot.

My child is now an adult and is working full time. It has been at times a long and dark road but I learnt much and developed a rhino hide along the way (you people will have to do the same and become your child's advocate as well as their mum).

Do not accept the word no.

You will need to be persistent in order to get answers. Be persistent

No-one is better placed than you than to help your child with their additional needs, this is also because no-one else is going to do it for you.

Develop a rhino hide; this will happen over time

Find some good quality sitters for your child (I used an agency). You need a break sometimes from the grind which at times seems relentless. I went to college and enrolled in a language class

You will really find out who your friends are particularly when it comes to school and collecting your child from there. I was fortunate to have had some good support when needed from both parents and teachers. I myself remain very grateful to those people even now.

Do ensure that your child's needs when it comes to education are fully met; become clued up on current educational law and EHCPs. Apply for one of these asap and certainly long before your child reaches secondary school age. Too many people with special needs fall apart when they get there in particular mainly because their additional needs are not met.

Use the services of sites like the Special Needs Jungle, IPSEA and SOSSEN. IPSEA have been going for years now, their site is ace and they now have a phone helpline in which calls can be booked (something that was not around back in the day). IPSEA and SOSSEN are very good when it comes to educational issues.

Watching this thread.

@AttilaTheMeerkat Thank you for your post. I am happy for your adult child who is now working and for your family. Your update means a lot to me and for parents like me. When read your reply, I feel more positive now in my journey with my spl need child.
Your are right, moms or carers need to take break and takecare of themselves to help their child better. Yes, tough times will shows us real friends. Tight hugs to you. Thanks a lot for coming back to us. Wish you and your family a happy life.

Hi, my daughter is now 11, but I have been posting here under various names since she was about 8 weeks old and really I already knew something was different in her development.
I posted about my worries and fears, my desperation for things to be ok and schools. Endlessly about schools. In fact I am now going through another massive anxiety about school now she is transitioning to secondary.

Now my daughter is older and I can see who she is more I realise that those dark, dark days are behind me and Maybe only now with hindsight can I see how dark they were.

I guess I would want parents to know that from my experience it won’t always be so scary, the worries about who they will be will lessen when you ge to know them and realise all they can do will be more important than what they can’t do.

I wish I had enjoyed who she was more rather than trying to get her to be what she wasn’t.

And school. Find the right school. Moving her out of mainstream and in to a special school was the single best thing we did for our whole family in terms of stress.

My daughter has ASD and had significant speech delay, learning disabilities and has poor fine and gross motor skills. She is funny, confident, sociable, chatty, loving, brave, determined, I think I thought she would somehow have no personality as she had ASD but she has it by the bucket load.

I have a lengthy post under a previous username from about Aug/ Sept 2018 with my concerns about my then 7yo at the point that I was facing that his meltdowns were clearly not age appropriate and that there may be SNs involved beyond an obvious undiagnosed dyslexia that we were having to wait for.

Last spring at 8, the dyslexia and dyspraxia were diagnosed through a private specialist organised by school costing about £300.

Last autumn, shortly before his 9th birthday, he was identified as having high functioning autism.
It was a relief to have a concrete reason underlying his quirks, emotions and a range of unusual difficulties.

The mindmap of every detail I listed and sent to the GP basically diagnosed him along with supporting evidence from school and a QB test. Because he masks so well at school, it hasn't presented as an issue there... yet... I'm the safe place where he can vent a 4 hour meltdown because being asked if he changed his reading book was enough when his dyslexia was drowning in SATs. I was pleasantly shocked that the consultant felt she had plentiful evidence to diagnose without refering on to psychology because of how good his mask is (until his function fails). There was evidence from the early days when he had SALT, and I'm glad that I did flag things up from the begining when they were just a little off and too small to join up the puzzle. If only I'd known when I had a screaming, writhing, indestractable toddler who was beside himself for lengthy periods because we didn't go to the toy aisle on a quick trip to the supermarket, or I'd drawn the car-transporter-steam-train wrong because the cars weren't arranged to his specification. I used to be totally bemused on AIBUs about the need to watch 4 year olds hawk-like when he'd engross himself in Lego for hours without blinking.

We're still early days. Next stage is to go through the EHCP process so he can have appropriate secondary transition and select an appropriate mainstream school. But knowing is so much better. It doesn't solve the hard moments, but it depersonalises them. It doesn't absolve him, but it makes it easier to manage triggers and discuss his choices.

He's still the same warm, funny, loving, explosive tempermental, encyclopeadic, perfectionist, quirky, individual boy he's been all along, we've just got a better window into what makes him tick and to make his world a bit more managable

Been posting about 10 years. Mine is 16 now. Got an EHCP in time for secondary, fought for special school placement and got it, got DLA, applying for PIP now. It hasn't all been easy or fun but on the whole life is good. So much of what I know has been from MN.

Keep all your paperwork, you will need it over and over again. Scan it, back it up, file it.

Network, network, network. Children's centres, SN suppprt groups, FB groups. Seek out other parents and support each other.

Sorry mommies for the late post.

@LadyLuna16, Thanks for coming back with your experience. Sweet girl is lucky to have as a mother. God bless both of you.

one of mine had salt aged 2-3

given that their vocabulary is, ermm, extensive, colourful and loud, one sort of wonders why I bothered...

At 3 years my boy was non-verbal, had poor receptive language, wasn't toilet trained, showed no interest at all in other children or pretend play and he screamed half the day.

At 6 he is verbal (although I suspect he will always find speech and language a challenge.) is toilet trained. He can read and count. He has really imaginative play - albeit mostly focused on trains (his special interest). Whilst he is more of a loner than most kids, he definitely has children he likes and plays with at school. He's in mainstream education and very happy there.

Challenges still mostly focus on motor skills (he can't really use cutlery, use scissors or write- although his grasp of spelling etc is really very good.) He also has poor focus and attention - he often wanders around the house with socks half on because he loses track halfway through dressing himself. However, he's come so far in 3 years that I know now not to underestimate him. We'll keep working on it.

@BatleyTownswomensGuild how did you find toilet training? We are currently trying with our ds age 4 and really struggling. He never lets us know he needs to go and if I dont catch him in time he will just wee anywhere.