Worried about my son

[motherrunner]

New to all this so please bare with me!

We’re in the process of having our 4 year old DS referred for a multi sensory assessment. From birth I’ve always felt he was ‘different’ - physical delays, only been speaking in last year. Those differences have become more pronounced since starting reception. He goes all day without eating as he only eats a small range of food and when I say all day I mean from 7.30 when he’s dropped off at breakfast club until 5pm where he is collected from after school club. He is managing by eating crackers (which I pack in his bag) and drinking milk. He’s been at school a month now and has been sent to the head teacher’s office a couple of times for hitting other children, he does this if he feels his space has been invaded.

Up til now I’ve been relatively coping - spoken to GP, spoken to his teacher, spoken to school cook - all to try and find strategies to help him cope. Yesterday though was the first day I’ve truly felt defeated. He was invited to a party (whole class). For 2 hours he sat by me. That would’ve been fine except he didn’t engage at all with the party. He sat and got his cars out and played at the table. When it was food time he didn’t want to eat, just wanted to play with his cars. I could just see all the other parents looking at us, especially when their children came over to ask if he wanted to join is but he didn’t even look at them.

I haven’t slept all night. It’s the first time where I’ve felt sad for him and worried that this will really have an impact on his future.

The GP is writing a letter for a referral but apparently that can take months. I’m not sure what to do now. How can I make him happy? He’s miserable and tired as he doesn’t eat and he tells me he plays on his own. I can’t tell how he’s feeling as he can’t express it and doesn’t really show emotion apart from when he’s frustrated and then he screams.

Not sure what I’m hoping for by posting, just don’t know where to turn at moment.

Anyone? 😊

I have a DS with ASD who is 7. It's really hard and there is endless problem solving to work out what is bothering him and what to do about it.

My DS cannot go to breakfast club or after school club. He just couldn't cope with the noise and the anxiety. So we have to have a nanny. He has also spent periods of time coming home for lunch from school to give him a break from the noise and pressure at school.

It's really hard

I've no idea on your financial situation but it might be worth getting him an assessment privately so any support he needs is put in place quickly. Does the school have a SENCO? He sounds like he's really struggling and being sent to the head for hitting isn't fair if he does end up with a diagnosis of ASD.

A diagnosis would open up a lot more avenues of support for him and the school should work with you to make him more comfortable.

It sounds as if your lovely boy has lots going on. Hopefully other professionals will help you unpick what, and find some strategies to help him deal with it without the fight/ flight response.
There are things to help extend emotional literacy, and to develop / support sensory overload.
In the meantime- look after his and your self esteem. Enjoy playing cars with him. Look at his strengths. It won’t make the worry go away, try to hold on to different does not mean less.

Thanks for your reply.

Up until this year he went to a childminder but I returned to work full time Sept and she couldn’t offer him a place for wraparound at true end of the week, I think he would’ve coped better there as she was really accommodating towards his needs.

My husband and I are teachers and we have no family near by so I can’t take him home in the day. That’s another thing that makes me feel guilty. After mat leave I was working 3 days a week but now I’ve gone back to being full time and I’m regretting it as I feel I’m forcing DS to be out the house 10 hours a day when he doesn’t need to be.

The school does have a Senco but I’m not sure how great he is. Occupational therapy thought a year of the ‘Cool Kids’ programme would help but there’s no-one to run it at the school. Maybe I should speak to the head? It’s hard when I haven’t got a diagnosis, just a case of me going on a feeling.

Thank you for all the replies. Please keep giving advice. I have to go to work now so won’t be checking in again til this evening but any help/advice will be gratefully received!

I can’t address everything, but I also don’t wa t to leave this unanswered.
DD(7) is generally confident, bright and sociable, but also hated parties and would not join in until about 6-12 months ago. She just found them completely overwhelming, and I don’t think that reaction is that uncommon.

DS(10) also used to have a very limited range of foods he’d eat, also largely cream crackers. It was school dinners that got him a bit more experimental. He also used to scream when stressed/worried/threatened etc. When he was about halfway through Reception I spoke to our GP and his teacher about CAMHS referral, although both were reluctant. He did get as far as appraisal by the school nursing service, who pretty much dismissed him as he can make friends. His Y1 teacher was amazing with him though, and helped us with lots of coping strategies. He was on an IEP (individual educational plan) for about 18, to help him and school staff manage the more social aspects of school better. He’s Y5 now. He has always done ok at school. He’s never had loads of friends, but has always had 2 or 3 really close friends.He is very immature for his age, and this is masked by having a September birthday, where he is grouped with children up to a year younger than him. I am not convinced that he has not got some element of behavioural difficulty, but school is clearly not interested in supporting this. Tbh, his behaviour at school had improved no end in the last couple of years.

Your ds’s combination of behaviours does sound like something worth investigating. Your GP sounds supportive. Writing that letter is the start. Having some strategies at school/dinners might help. Does your DS ear better at home? I’m not an expert on this at all, i’m Not sure I can offer any advice, but I wanted to share my experience with my DS. His behaviours sound less extend than your DS’s though, which is why I would encourage you to pursue support. Good luck - in my area CAAMHS referrals can take 3 years!

Food wise , can you not make him a packed lunch of food he will actually eat? With extra to eat at afters choose club? If he was getting adequate food then everything else might get a smidgeon easier?

I think you need to arrange a meeting with the senco and class teacher, diagnosis doesn’t matter at this point because it’s about looking at his needs and getting support in place.

Why isn’t he eating? Is it the food itself or the noise and chaos of the hall? Ds doesn’t eat his dinner in the hall any more which has helped massively.

As for the parties we soon realised that ds got nothing out of going to them and actually they where just stressful for him so now the few invites we do get we politely deciline.

Any chance you could defer his school entrance? Perhaps he just needs more time. Could you or your husband go down to part time? I know that’s a hefty proposition, and the answer could just be no... I only ask bc you mentioned the change to full-time was recent so perhaps it could be readjusted? Especially if he was doing well with the childminder.

On the other hand, it’s still early days. Perhaps he just needs more time to acclimate. A person could do worse than crackers and milk, really. Perhaps it’s just a case of abiding with him for awhile as he starts in his own way, as you’ve been doing. Playing with cars is so fun and four really is very little yet. Talking with the head would be a good idea to get him/her on his side.

Gently does it, for him and you.

I would see a private OT who is qualified in sensory intergration. They can assesss your DS sensory needs and give you and the school daily activities to do (a sensory diet). If his sensory needs are met, he will find it easier to cope with other things.

Are you able to go back to 3 days a week? As you say, it’s long hours, lots of NT 4 year olds would find this hard so I imagine he is really struggling.

What are the limited foods he will eat? Can the school not accommodate this?

For the party, it sounds like he did really well. He sat and played nicely and by getting the cars out he’s actually solved the problem of being unable to join in. In situations like that, I would just model the correct response to the other children so he hears you saying it so he knows for the future. Then obviously tell him how well he did for going to the party and for being so well behaved, etc.

Look up SN groups in your area, you don’t usually need a diagnosis. There are often adult drop in ones and this is where you find out things like who is a good OT, which schools are really good at managing particular SN, groups going on for children, etc.

One of mine didn’t really join in at parties until the end of year 1, he found them completely overwhelming. He also couldn’t cope with full days for the first term in reception so we stayed on half days, he would have really really struggled with an extended day. He also had a speech delay and struggled with frustration and aggression. If there is any way that you can cut back your hours at work or get a nanny then I would absolutely do this. How did he find nursery?

Thank you for all the messages and kind responses - feeling a emotional just reading them.

I’ll try and address all points, apologies if I miss anything!

He went to pre-school attached to his school. He was undergoing speeach and language therapy at the time so his teacher was really accommodating of his needs. He didn’t have any friends but we out that down to the fact he didn’t speak and therefore couldn’t communicate.

I asked him when I picked him up from club whether he’d like a packed lunch tomorrow. He said ‘no, dinners’. He’s got into a routine of going to the counter that I think a lunch from home would confuse him.

I can’t reduce my hours. I moved schools this year and have been employed in a full time contract. I can request flexible working after 6 months. My husband has requested flexible working in the past but he’s always been turned down. His school doesn’t like split classes.

Not sure if there are any nannys in my area but that sounds expensive! Worth looking into though.

Have now requested a meeting with the head just to talk about strategies in the meantime, think that’ll help.

I’ve also taken the posters advice about not going to parties. Am also applying that to my life short term. I’m physically tired of putting on a smile and pretending things are fine. I haven’t got the energy to work, take care of my children and go out with friends. Something has to give and in the short term I want to hide away!

Thank you again for sharing your experiences. I’m sorry you r all had challenges but it’s a relief to know I’m not alone 😊

Encouragement and a cup of tea from here!

Re the parties. I didn't get the impression that you thought he was stressed out. More that he was uninterested in it and wanted to play cars. If you don't think he was distressed maybe you should reconsider declining invites.

It's ok to let him know he is ok as he is. You don't need to hide away. It's ok to let the other children see him playing in the corner. You, personally, might find it easier in the long run. He's going to be with these kids for a while, so be honest with the other mums, ask for advice even if you don't take it about eating, etc. Ask the party organiser if there will be a quiet corner where you can set up so he can play with his cars. Tell them he'd love to come, but is unsure about joining in. Don't isolate yourselves right from the start.

It’s easy to get overwhelmed when there is a lot going on. What helps me is to identify different things I am concerned about and have a plan of action for each.

The SN boards are full of knowledgeable people who might be able to help with how to get the system to work for you and get a diagnosis.

The food issues seem sensory. I have a DS also 4yo who eats very little and it is extremely stressful and frustrating. Have you heard of Direction of Responsibility? It was a huge help for all of us. There is a lovely, supportive and non judgemental group on FB called Mealtime Hostage that helps with DoR. There is a lot of helpful advice on there, if you are on FB have a look.

Just logged back in and caught up with further messages. Thank you for the support!

No he didn’t seem distressed at the party. He was happy to sit and play on his own. He only became anxious when I asked if he wanted to sit with the other children.

We had a meeting this week with his head and his teacher. They were very supportive and we’ve formulated a plan. He’s able to go straight from before school club into class, instead of on the playground, in the morning; they are letting him have snacks from home throughout the day if he’s not eaten; he’s being taken away from the carpet for whole class learning and is able to sit at a table with the TA for a more practical task. Tbh it was a relief just to talk to someone. We got a little emotional when his head told us to focus on the positives - that’s he’s happy and healthy and they’re glad to have him in their school. I guess we’ve been so focussed on his struggles we keep looking past the happy little boy inside.

No I haven’t heard of DoR, will check it out! Meal times are such a struggle, it’s be interesting to see other people’s experiences and maybe get some tips.

Thank you all again.

That all sounds really positive OP.

I would reconsider about the parties, and ask your DS how he feels about attending each one. I've taken my DS (3) to parties where he appeared to hove no fun at all, only to find that he remembers them fondly and looks forward to the next one. Sometimes I think as parents we suffer massive pain watching our DC's struggle socially, when they are actually enjoying themselves in their own (odd) way.

I wonder if he has autism and/or a sensory disorder. My ds1 has both.

Funnily enough he did say he enjoyed the party and I just thought ‘how?’ But if he gets another invite I’ll ask him if he wanted to go and let him lead the way.

I went to the GP nearly a month ago and told her if my concerns. She has written a letter requesting an ASD assessment but I’m not sure how long that’ll take. It took months before we got an assessment for speech and language a couple of years ago.