Please can anyone share ideas I can do myself while waiting for dx?

[Flook76]

Hello
Sorry about the long title, thought I'd try and make it clear!
First posted on here about 2 years ago, since then been chugging along but we're now referred and waiting for an assessment.

DS is 4.5, currently at preschool, starts (unfortunately a different) school in Sept.

Preschool, like me, definitely feel he's 'on the spectrum' somewhere (high functioning I think).

In the meantime, my heart is breaking over his interaction with his peers

He desperately wants friends, but he doesn't know how to interact, play appropriately with them.

His way of trying to join in is to push, which results in crying or fighting, when in his eyes its overtures for friendship! He's also fairly obsessed with Mario Brothers (he will watch You Tube clips of other people playing the game for hours if I let him and constantly talks about the characters. I've now really limited the time he does this and its rewards based only as was concerned about the battling element which he is particularly fixated on)

Things really came to a head last week when another (mild) little boy said he didn't want to play with DS and DS attacked him with a brick (I assume a toy one).

I have accelerated my concerns with preschool and they are seeing what resources they can access without an officially dx. My worry is that the parents of this child were understanding, but not all parents would be if their child was attacked. DS shows little to no remorse as on his eyes this boy is not a friend, so why can't he hit him?

Preschool agree his emotional and social development are delayed.

So. Preschool suggest doing social stories with him which sounds good.

But what else can I do to help him? I think he'd benefit some kind of anger management behavioural therapy stuff but can I only access this through dx, or is there anything I can do myself?
(This wasn't the first fight, I've had to stop taking him to soft play centres as it always seems to kick off in there, maybe the confinedness of it. He just isn't very good with boundaries and always pushes other kids).

I think I need to be braver and organise some structured play dates for him (he never gets invited to parties or to other kid's houses which is heart breaking. He's also asking to have 'friends' round as he knows that's what the other children in his class do, but its really hard as I'm not sure who his friends are, and neither is he. Because ultimately the other children don't play with him really as he's not that nice to them : ( )

I just want to do whatever I can to support him and try and communicate these unwritten social rules that come to easily to other children, but don't to him.

Any thoughts on where to go for resources / ideas that are tried and tested?

Thanks for reading!

Have you looked at the book - Out of Sync child? Seems like a lot of sensory stuff going on

Thanks no I haven't! Will check that one out.

Hang around the playground and take sand toys - 2 of each... Play with him - kind of take the part of w child yourself - and model how to interact with other kids yourself eg sharing the spades taking it in turns etc etc
Starting off with random kids in park might be easier as is more casual

Good book called Join in and Play by Cheri Meiners on amazon (a social story)

hi this is my first time here, you need to get it touch with your local childrens services team. Everywhere has one, they will hopefully offer you some home support and ideas to help your son join in with others. Do you have any older siblings? I had a really great one for my son. to be honest it didnt make a massive difference but it kick started to whole thing. My son now has a full statement of need at school which i have to say would probably not have happenned if was not for them and the school being so brillliant about it. he too has not any friends to invite round, its a hard time. i have shed many tears over what wiil be and mosty every day at school is awful but at least his there rather than somewhere else which i feel would make things worse. Dont worry. you can sort it out.

Oh thanks very much for the replies, all really helpful suggestions. It's really nice to be able to talk about it all here, I don't talk about it all that much in 'real life' but the worry is always there inside.

Will absolutely look into children's services. Have tried health visitor before on a few occasions but they weren't very helpful (just said he was fine!) and then this thing called Parent Pupil Partnership (I think!) but they could only help with a diagnosis which we don't have yet.

He has a younger sister, whom he absolutely adores (altho took a while to get there). She is an absolute godsend for him as they do play together and she's very forgiving of him. She is his protector despite only just turning 2! He often says he wishes she could go to preschool with him. They pretty much just play chase or hiding which are games he does enjoy and understand. So I'm very lucky there.

Hi Flook,

You can actually apply for a Statement of Special Needs from the council without actually having a diagnosis (presumably PP told you otherwise?. If so they are incorrect). You are already seeing that you are his best - and only - advocate here.

Have a look at IPSEA's website www.ipsea.org.uk.

Would also suggest you apply for DLA for your son as well and keep posting on here too. This forum is a mine of information.

No they didn't tell me that at all! Gosh thanks.
Yes already has more help on here than have got over the last 2 years (from professionals and family members)
Thank you.

Parent Partnership often work in close cahoots with their employers the LEA. In my LEA the PP work out of the same office space so I would not class them as totally independent or even impartial.

Continue to seek further advice on here and also use the services of fully independent charities like IPSEA and SOSSEN re school matters.

Would also apply for the statement asap as these can take six months upwards to set up.

dont give up hope for your boy. I too initiailly went to my GP who was no help wot so ever and referred me to the health visistor who never got in touch with me. Doc just basically said its a boy thing. Its not, dont be fobbed off. Keep going at it. You and your child need to be helped. Its a very upsetting time for all. Its lovely that his sister is so protective of him. My middle daughter goes nuts if he is in big trouble with us and when he is in restraint at school this really upsets her. Once you get the ball rolling it can all be sorted. It will never be a bed of roses but it can be so much better. Its really hard going to get the help and statement if thats what your family needs but its worth it in the end. Is there any teachers at school that can help. Or any other mums with SEN kids that could give u advice. Crack on. Good luck x

dont give up hope for your boy. I too initiailly went to my GP who was no help wot so ever and referred me to the health visistor who never got in touch with me. Doc just basically said its a boy thing. Its not, dont be fobbed off. Keep going at it. You and your child need to be helped. Its a very upsetting time for all. Its lovely that his sister is so protective of him. My middle daughter goes nuts if he is in big trouble with us and when he is in restraint at school this really upsets her. Once you get the ball rolling it can all be sorted. It will never be a bed of roses but it can be so much better. Its really hard going to get the help and statement if thats what your family needs but its worth it in the end. Is there any teachers at school that can help. Or any other mums with SEN kids that could give u advice. Crack on. Good luck x

by the way if u need any advice with the whole thing let me know, ive been there and got the t shirt with knobs on. x

I would also find out who your Area Senco is and see if they can give you a leg up onto the NAS Early Bird course. My EB had people awaiting a dx, but desperately needing the help as how to deal with their DC ASD.

If you can rummage about and find all the professionals reports, I agree that you should think about applying for DLA and also a Statement. You need to make sure that your evidence is good, and also that your own report paints a clear picture of him from birth to date, going through his issues in such a way that it leaves the reader in no doubt that your DS needs assistance.

My local Children's Disabilities Team have been excellent, very helpful and supportive. My HV ran for the hills as they would rather deal with the norm.

Thanks boy1

It really just helps actually being on here and knowing I'm not the only one. I've known for 2 years really but DH and others kept saying all was fine, but I knew in my heart.
It's taken preschool saying the same as me for others to finally listen (but even now DH very reluctant to get involved). Sometimes the worry just whittles away inside me with no outlet.
So all your support MUCH appreciated!

There's loads of stuff for me to read / look into now (and preschool have actually been great this week and given me lots of contacts and also invited me to a SEN seminar for the area which I'm hoping will really help).

Hi Flook, I had much the same with DH and my parents, and I felt very alone. DH has always been fantastic with DD and very supportive to me, but it took him much longer to come round to it - I know that he always hoped that everything would right itself. Once she got the dx though, he did take it on board and has just "business as usual" - which really helped me. I think I am still a bit more realistic about things though! What really helped me through the pre-dx time was reading here - I didn't feel so alone and I learned so much.
On thing that you might consider would be to speak to the pre-school staff and ask them to start doing some small group /one-to-one structured play sessions for your DS at pre-school to help with play/social skills. Ask them to start recording these, as this would be helpful for building up the evidence for statement etc. If they can access other resources, that would be great, but this is something that they could put in place themselves, I would think.
Apologies if you have already done this, but it might be helpful to contact the SENCO in the primary your DS will be going to in September so that you can work together to get some strategies in place from the start to help your DS settle into school and interact with his class-mates.
It's great that you have have got a referral in place, and it's brilliant too that he has a younger sister - the best therapy! Playing together is a great opportunity to do some initiation, turn-taking, sharing practice etc.
Good luck with your assessment, and your DS is lucky to have you.

One thing that you might consider would be to speak to the pre-school staff and ask them to start doing some small group /one-to-one structured play sessions for your DS at pre-school to help with play/social skills. Ask them to start recording these, as this would be helpful for building up the evidence for statement etc
I should clarify that I mean evidence based record keeping, as opposed to video recording -of course, there would be all sorts of data protection issues when taking video recording other peoples' children -not what I meant!

Hi Flook76. It sounds like you have a really good pre school there. It was nursery also for us that basically said what I too had known for a long time but didn't really know where to go with the whole thing. Good luck with the seminar. I really hope it helps. It will be good for you to just be with other people in the same situation who understand just how you and your family are feeling.