DS with ASD starting school Sept 2018 - I am feeling overwhelmed

[Hurricane74]

Hi

My son has a diagnosis of ASD and is due to start school next Sept. We are in discussion with the LA about an EHCP and have a Joint Assessment Meeting for early December. I had hoped he would go to a mainstream school and see how it goes, with the option of a school with an autism unit or a SS is things don’t work out. But now am feeling very doubtful a mainstream school could meet his needs. We had a report from the LA yesterday based on observations of him at preschool and it makes such sobering reading. It puts his developmental age at 8-20 months for most areas (he is 40 months) and his understanding and listening skills at 0-11 months. (His moving and handling skills are almost age appropriate). His main issues are social anxiety, sensory issues around noise and his lack of understanding and speech. Has anyone experience of a child with similar issues managing in a mainstream setting? If so, what kind of provision did you ask for and receive? Thanks for reading.

Dimples I’m so glad your weekend went well. Bless your ds, it must have taken so much out of him. It must have been hard for you to deal with. I wonder if some of us will get more of that once school starts. Ds is not masking yet, I don’t think. It doesn’t mean he won’t start to though, particularly when he becomes more aware of his differences.

Soulcakequack I’m so sorry, your poor ds. How awful for you both . I agree about the scaffolding and modelling what to say to other children in nursery. My ds is similar. He wants to join in but doesn’t know what to say, they are going to work on that for the rest of term. Can you push the SENCo some more?

Light did you make a decision on the school? Have you thought about applying for an EHCP yet if you are worried about support at school?

liv it sounds like your ds is making progress with turn taking and sharing. We seem to have been working on this ages. Sometimes he does, other times he won’t. We’ll keep at it!

Thanks for the EP info everyone. We’ve had some low level behaviour so far these hols but nothing major yet.

We haven't decided yet. It's half term so we can't talk to either school. Will put some questions together this week to send to both schools along with the report as soon as they are back on Monday, and then hopefully have meetings with both and make a decision. The thing is if the state school works I think it would be really good. But I do worry that with a large class in an inner city area however good the school is DD might get a bit lost and not get the support she needs to build her social circle.

I do worry that things like the behaviour Dimples saw are going to get worse: what kind of age were those kids Dimples - you said a bit older? I can already see with DD that some of her friends get frustrated if she won't answer or runs off to play her own thing, and I can imagine that can very quickly/easily translate into being mean as they get a bit older and more sophisticated. I have no idea what to do about it though ...

From my own experiences being bullied as a child, I can say that I think it is amazingly helpful/important to have a really strong base at home where you are safe and loved and accepted for who you are. It gives you a respite and also a core of confidence that you can draw on when things get tough. I had that and am so grateful to may parents for it. It's not a solution to what happens at school, but at least gives you a break from it and a chance to recharge.

Soulcake that is tough - positive that your boy is trying to join in though. I have never known such anger towards other people's kids since I became a Mum!

My son is often called a baby by his peers (he is tiny and developmentally delayed) and I have often seen them snigger at him (he seems oblivious to that at the moment). My boy is v chatty with adults but seems at a loss as to what to say to peers. We are practising asking questions at home e.g. what's your favourite colour and he has recently started posing the questions to other children.

On a lighter note I took my boy to Pizza Express today. When he was served his dough ball starter he didn't say anything to the waitress. I said 'what do you say?' and he said to her 'where's my pasta?' She moved on and I said to him that he needed to say thank you when someone gives you something. As the waitress walked by again he called out 'I need to speak to you' (I thought great he's going to say thanks). She came over and he said 'I need a poo'

dimples76 that is priceless! What did she say? It sounds like his speech is really coming on though which is great. I need to practice questions more, why is there always so bloody much to think about and work on? I am also very jealous of you being able to go to pizza express. Feels like a pipe dream here, especially with him eating anything. Great you’re able to do stuff like that.

Light thanks for the perspective on a solid home life helping with difficult times at school. Hopefully that’s what we can provide. I’m sorry you had to go through that though . Hopefully you’ll be able to make an informed choice about school. Does where you may want your ds to follow later have any bearing? I imagine separate drop offs are tricky, especially when you’re working.

I paused my reading of Alien in the playground for now and started reading Toast. I felt like I needed to read a Mum’s account to get some perspective and to feel like I wasn’t a failure. Yesterday I took ds for a walk to the shop. He was fine the way there (about 1/2 a mile), fine in the shop and then on the way home (a different route) he decided to sit on the floor, then lie down. He said he was resting and then wouldn’t move. Eventually I managed to get him to move by threatening to cancel our afternoon plans. I hate doing that but all other pleas seem to be ignored. He sat down a few more times on the way home but was easily moved along and we did some running too. Really not sure if he was tired or just a sensory thing, in the past if he’s tired he just asked to be carried. It wouldn’t be so bad if I weren’t worried that he might get up and run into the road before you could stop him. It’s times like these that I feel most alone and that other people don’t have to deal with things like this post toddlerhood.

Open that sounds like an exhausting walk.

Fortunately the waitress found it hilarious.

I am really pleased with my son's speech at the moment - I just wish he would talk to kids. We did have to make 12 trips to the toilet yesterday during our lunch and I was not sure if it was due to want to escape the noise of the restaurant or because you had to go down and unusual staircase to get to them (my boy has a stair obsession). In terms of food we have seen a lot of changes recently - this time last year he wouldn't eat any veg. Yesterday he ate some cucumber and cherry tomatoes - you could have knocked me down with a feather!

Light good luck with the school choices.

I am taking my boy on a solo visit to school next week ahead of all the new starters visit the following week. Absolutely dreading it

I hope we make some progress soon with food. We’ve had two and a half years of this now. He’d live on oatibix and toast if he could. In fact he often does

Good luck with the school visit. Not sure when our first one will be. We have a parents evening next week so hopefully we’ll find out then. They do a picture book of the school for all children so that should be helpful.

You have encouraged me to try a restaurant like pizza express. If we can find one conveniently located then it’s with a try. Usually quick service. He won’t eat but he may sit, he does in a cafe usually. I’ll speak to dh.

I love that story dimples! Glad the waitress found it funny. Isla asked loudly if a waiter was a boy or a girl a few weeks ago. Not sure he found it very funny (very masculine guy but with a huge man bun which is what confused DD - that's Hackney for you!) but his colleagues found it hilarious

Separate drop offs is definitely a big consideration open. DS is 3 years behind, so if we go private and follow's DD's path it means he'll never be in the same school as DD for more than a year. One of the schools she could possibly go to at 7 has a school bus, but then it's a very long day between pick up and drop off (so makes the logistics super easy for us, but I worry it's a long old day). I'm working FT at the moment but hoping to drop to very PT when they are both at school so I can do most of the holiday and wrap-around care myself... will have to see how that works! If she goes to the state then they'll overlap for 4 years I think... Of course this also depends on whether DS is NT or also needs help - and if so what kind of help - so the right school for her may not be the right school for him anyway. He is a funny mixture - no words yet at almost 15 months (which is behind where DD was at the same age) and doesn't clap, which DD did a lot - but he points (loads) and waves which she never did. So who knows. I think it's a bit early to start doing anything about the lack of words, I'm sure they'll just tell us to wait and see. But it means it's hard to really know what's best for DS as well as DD.

I think getting more confident talking to adults is a great first step talking to kids. We've found with DD that everything she does she feels much more confident with adults first and it can be months before she has the confidence to then try that skill out with her peers. She'll do it with us first, then with adults at school or grandparents/uncles/aunties, and only eventually with other kids. That has gone for pretty much every social/interactive thing, and I'm hoping it will still hold true in the future. At the moment she is starting to really play "with" other kids (even doing pretend play e.g. building a camp fire and both coming up with ideas for what kind of sticks to get, how to "light" it, what to cook on it, etc.) - but she tires much more quickly, so after 15 minutes she'll be done and the other kid wants to carry on and can get frustrated with her.... so there's always a difference, but there's also always progress, so I guess I just try to focus on the latter! I think it has helped her to do lots of pretend play with us at home and turn taking games - means she doesn't have to think "from scratch" if she wants to join in something the other kids are doing - she already has some practice with us. I'm hoping as she gets older if her special interests align with some of the other kids then she'll be able to find some friends that way, as she has really good staying power if she's doing/talking about something she finds really interesting.

So funny dimples! Good luck with the school visit, hopefully it will go well.

That does sound exhausting (and familiar) Open.

Yes that is a good way to think of bullying light. I guess at the moment my ds is only partially verbal and very rarely tries to interact with the other kids this isn't such an issue for us yet. Things will probably change once he gets to school.
I also wanted to say that my dd, who is a couple of years younger than ds has been slow to speak too. I bought it up with the health visitor at the 2 year check and she's now under SaLT. Initially they didn't want to asses her (as sometimes speech doesn't come on till 2.5years) but did because of ds's diagnosis. So worth bringing it up with them if you are worried. Apparently it's quite common for younger siblings speech to be delayed if the older child has difficulties with speech. I don't know how verbal you dd is at home, but maybe that could be something to do with it?

I don't think it's that liv as DD is "on time" with speech (first words at about 13 months and progressed at least in line with expectations from there - she's always had quite a big vocabulary). So she talks a lot at home (including to him, as well as herself, us, visitors - it's only really peers that she's quiet with). With DD it's more about how she uses language (i.e. to describe things rather than to ask for things) that got her picked up, and more recently that she doesn't talk to peers much.

I did mention to the Paed/SLT at DD's assessment that DS wasn't talking yet and they didn't suggest anything, but we have another call that we are allowed to ask any follow up questions, so maybe I will ask then... My area is actually quite good for SLT (drop ins almost every day of the week somewhere in the borough), so if he still doesn't have any words in a couple of months I could just take him to a drop in.

Yes light that does sound quite different from our situation. 15 months is still so young too. Great that you have a good SaLT provision. Ours is pretty rubbish with big waiting lists!

There’s a thread in AIBU about saying no to kids. These people who are excellent parents who just tell their child what’s what and it works, how do you think they really do it?

Ds quite often refuses to get in his car seat when he doesn’t want to leave somewhere. How on earth you just ‘put him in it’ and all’s well I’ve no idea. I’m too chicken to post, I’d be accused of being one of ‘those’ parents!

That should have been ‘excellent’ parents.

I know. I have to admit that I couldn't bring myself to read the thread. We're lucky that DD's behaviour is pretty good but when she starts to lose it any action other than backing off and giving her a few minutes to get it together is doomed to failure.

I mean, the example in the thread could be bad parenting. But I know a few parents who seem quite indulgent and maybe their kids are a little naughty but still not melting down all over the place. You have to guess that actually something else may be going on...

Ignore me, I’ve just been over sensitive the last few days. Feeling like I need a better plan for today and to start thinking about the long summer holiday. Feeling more positive today.

I do read these sorts of threads through gritted teeth though. I do not think I am a permissive parent but often my best efforts fail.

Try not to beat yourself up open. From what you've written on here you sound like a great parent and it is hard. We're lucky to be going through an ok patch at the moment but it doesn't take much to set everything of again.

Also I'd like to see other people try and get my ds in a car seat if he didn't want to!

Thanks liv. Indeed, and even if you got them in they can get out again!

So true Open! We got a Crelling harness a few months ago which has been amazing but he still refuses to wear the shoulder strap part of the seat belt. At least he isn't wondering around the car while I'm trying to drive anymore!

Open I’ve spent a long time thinking I’m a bad mum. What I’m coming to realise is that I’m not. My child’s differences make the world hard for him and parenting hard for me. People who stare and tut and whisper have no clue really.

Absolutely no clue. I don't think I was judgmental before (or at least, relatively not judgmental - I definitely would never have said anything, though I remember being shocked seeing an older boy in a buggy and it literally didn't occur to me that he might have SEN or able to walk but not long distances) but I certainly am not now. You just have no idea what anybody's back story is. Always safest to start from the assumption that people are doing their best and have the best chance of working out what is best for their own family, unless proved otherwise.

Anybody want to share some more book ideas? Just got a really good book about emotions/feelings and am really feeling excited about it. It has about 12 different emotions in, and you choose one from the front page and each one has a pair of pages with lots of ideas of different things you can do if you feel that way. It's called "How are you feeling today?" by Molly Potter. She has another one called "Will you be my friend?" that I thought I'd try over the summer in preparation for school. It says its for 6+ but I got it out last night and DD seemed to really enjoy it. Wanted it for her bedtime story and was asking what the different pictures were showing (and for a girl who doesn't ask much, this is in itself good!)

The other feelings books I love are "The Colour Monster" by Anna Llenas. The pop up version is particularly beautiful and there is also a colouring/activity book that goes with it. And finally "Miss Hazeltine and the Home for Shy and Fearful Cats" by Alicia Potter. Just about feeling shy and scared but such a lovely one. DD loves it and we act bits out and talk about being brave.

Anybody else got good books about feelings?

Our EHCP has just been to panel and has been approved!! I know we still have to go through all the finer details but I am so relieved!

That’s fantastic liv, congratulations

That's great news!!! And in time for the weekend!

Thanks for the support everyone.

Light I’ve no suggestions I’m afraid but I’ve put a couple of your recommendations in my Amazon basket, thank you.

Well this afternoon hasn’t really gone to plan. Ds has fallen asleep so late bedtime for him now too.

Thanks!

Thank you for the book recommendations light. I don't have any to add either unfortunately.