Need Advice From Mums Who Might Understand-Can you help?

[MissiMoo]

Hello there! I am new to mumsnet and I hope that I am doing this right! I am looking for advice, experiences, reassurance really! Hope that you might help!

This is the very short version as I could probably write an essay and will never get to the point so here goes....!

My DS1 was born very early (26 weeks) and was very poorly in intensive care for 6 months, ventilated on and off, 3 big operations and home on oxygen for 3 months. he has always been very undemanding and placid and until he hit nursery @ 3 we didn't really worry about anything other than his speech delay-we were blessed and grateful that he was here!

Has been dx as speech and lang delay, with Developmental delay and problems with fine and gross motor skills. Battled to get him a statement and have just secured him a place in special needs unit within a mainstream school which has seen great results and has a good reputaion (has anybody else had any experience of these units?) He has started abd has settled in really well - he is slowly making progess and is running about 1.5-2 years behind. His consultant is convinced that it is due to his prematurity and will take time to catch up - I know we were prepared for this to be the case but I am petrified that she might be missing someting! He takes well to new people and situations, rarely has tantrums (not often or regular) and is desperate to interact with his peers (although alot of his speech is still not clear) but I read on another website that spinning wheels on cars etc is a sign of autism, he used to do this but not so much now,-should I be worried? He aslso has an obsession with door handles - is that another sign? and he copies adverts off the tele - i don't want to push the cons if she is happy with her dx but I am petrified that something might be overlooked. He is so happy, friendly, non-assuming (too placid actually!) and he is really coming on now-should I give it time? or am i spending too much time on the negative and not enough on the positive?

Am I being over the top or should I just wait and see how he gets on at school - the unit seems fantastic and his teachers are great and all the people involved in his care are convinced he is well placed there- - I am just really scared that it is being put down to a catch up game or is that quite normal for such prem babies to catch up and run behind for some time??? I am going on-sorry! - ANY stories or experiences or opinions welcome PLEASE!- need some reassurance before I do my own head in!!! On my mind constantly - cannot sleep!!! Am I being totally over the top? My other half totally trusts the cons and her dx - maybe I should too?

[mymatemax]

Oh missimoo I could of written much of that post.
My ds2 is 5 just started ms reception. He was born at 28 wks, ventilated as his lungs collapsed & oxygen for a couple of months etc.
DX initially with GDD & was told that eventually he would catch up, I guess he still might?
he too was the easiest most passive baby, in fact if we didn't stimulate him he would lay all day didn't really even cry when hungry etc.

He still has the developmental delay but has also been dx'd with mild CP & is just in the final stages of a dx of autism, initially his social difficulties were not thought to be autism because he is so placid & was so obedient etc. But he is lucky to have a good paed who keeps fighting his corner & is on the ball.

You know your ds better than anyone if you think something may of been missed ask them to look again. Take care max

[TotalChaos]

Hello and welcome MissiMoo! My DS (3.6 )sounds very similar to yours, he wasn't prem though. I would wait a few months, to see how he settles in at school, then if you are still concerned about DX, talk to paed about it.

[EmmaJW1976]

Hi all

Hope this can reassure you a little??

My DS was born premature, although not as premature are your DS (34 weeks). He was always delayed with everything, never crawled, late sitting, walking etc.

When he was 1-3 years old he would line things up in colour order, copy adverts on the TV, stare at peoples shoes and basically just sit there not being at all demanding.

Autism was mentioned but never followed up - I think I just put everything down to him being prem.

Anyway, when he started the school nursery at 3 they noticed there was a problem with speech and developmental delay and referred him to ST. I mean, at 3, he really couldn't say anything that anyone could understand (except me!).

I struggled and struggled with him as he seemed so much younger than his friends (in every way), but was also so much easier to handle as he never wanted for anything and would sleep til late in the morning if I let him!

....2 years on, he went into Year 1 at school. Wow, did he fly. I mean he literally went from not really grasping anything to reading, writing, adding up and spelling in one half-term!

His speech became really clear and he zoomed to the top of his class, he was the first one to finish his word cards and move onto a book a boy was I amazed and thrilled!

He is now 8 and doing really well. He still lacks a little concentration sometimes and does like his own company a lot. But saying that he has loads of friends to play with if he wants to, he's not a loner, he just likes doing things alone sometimes. Oh, and he still acts out the adverts!

Autism was never mentioned again but I do sometimes still think about it and how scary all those years were and how I wish I'd have known it would turn out like this.

Sorry this is so long - just hoped it would help a little!
x

[MissiMoo]

Thanks so much all - so good to know that others are there in my world - feels so lonely sometimes doesn't it? Thanks Emmajw1976 - your story has given me a lot of reassurance - thank you! I am so glad that your little one has done so well and it is great to hear such a fab story - my little man has just started in a small unit in a mainstream school and is doing really well and for that I am truly blessed. thanks all again - I really appreciate it x

[spanish]

Hi MissiMoo, have you looked into dyspraxia at all? Your son sounds a lot like mine - also prem, also had a rough ride in the neonatal unit, and has speech and gross and fine motor difficulties. I found the Nuffield Dyspraxia system was the only speech therapy system that worked. At 3.5 he had only one sound "duh" (and like your son was desperate to talk) - after one hour of this therapy he could make six sounds. It was painstaking after that though, but he can now talk near-normally. There's a specialist called Madeleine Portwood who writes good text books on exercises etc to help with gross and fine motor problems. You'll find a lot more info on the Dyspraxia Foundation website. Good luck, and it does get easier as they get older, mainly I think because as a parent you calm down and get used to living with it.

[jessy1971]

MY SON AS THE SAME PROBLEM HE'S 13 NOW HE IS STILL DELAYED IN HIS SPEECH HE CAN'T MAKE FRIENDS EASY BECAUSE OF THIS HE IS IN A UNIT IN A MAINSTREAM SCHOOL AND IS COPIN REALLY WELL HE TOO LIKE YOURS AS LITTLE OBSSESSIONS LIKE LINING TOY CARS UP WHEN HE WAS YOUNGER HE STILL DOES IT SOMTIMES BUT I HAD TO PUSH FOR THE DIGNOSES IT TOOK THEM 10 YEARS WHEN THEY SAID HE WAS AUTSIC SO GO WITH YOUR GUT FEELINGS AND KEEP PUSHIN