Scared, devastated & helpless

[Hallybear79]

Hi, was hoping to find some reassurance & comfort with my current situation. I've always had concerns about my DS's behaviour & always thought he had a few autistic tendancies & on 2 occasions i informed the HV about my concerns but she just said he was fine & it was just his personality & since then i tried to push any other worries to the back of my thinking i was just being a paranoid mother.
But since starting school, certain behaviours have become milder & others have worsened & i would also say hes showing signs of ADHD as well. His teacher had a word with me last week informing me his behaviour "was not acceptable" & would "cause havoc with the ofsted inspection" that is due. She then blurted out that she thought it was autism/AS & he needs to be seen.
As you can imagine i was shell shocked, mainly with how totally insensitive & umproffesional she was. At first i felt a fraction of relief that it wasn't just my paranoia but then since then i've become depressed. I've read that its normal to feel this way when theres been a diagnosis but not at this early stage. I've got an appointment with the GP to ask for a referral. I know its going to be a very long & painful road to get any answers & just scared that i'm not going to cope. It's really shocked me to how i've responded to this. My husband is coping really well & is very positive & level headed but i've just crumbled. Has anyone else experienced this?

You're right. She was incredibly unprofessional and insensitive. Under no circumstances should she have said what she did. I would suggest you make an appointment to see the school SENCo (special needs co-ordinator) to discuss your concerns. While there, I would also be saying in very strong terms how unacceptable her approach so far has been.

Her OFSTED comment was quite extraordinary and should be the least of her concerns!

I know that you will get lots of support here.

Good grief. I hope you asked her what the reason was for her lack of social skills. Ofsted aren't inspecting the children, they're inspecting her, ffs. They would be wanting to see what she is doing to try to help him to behave appropriately.

I think that what you're feeling is pretty typical. It's good to find out that you're not going nuts and seeing things that other people aren't. I knew all along that DS1 had issues and i had a pretty good idea what they were, since ASD runs in my family, but I was still shocked when he got his autism diagnosis.

Firstly, the teacher was totally out of order, it is not her job to diagnose your Ds.

As for him upsetting ofsted. There are several outstanding schools in my local area, all of them are totally inclusive and have many children with special needs.

The teacher is obviously struggling and needs to be proactive and find ways of supporting your Ds. I agree that you should see your GP and request an assessment but there are things the school should be doing too.

Is your Ds on the Special Needs register, if not he should be and if the school are wanting involvment from outside agencies then he should be on School Action Plus with an IEP with targets to support him and encourage progression.

Good luck

Hally i am new to the board like you but there are loads of really helpful people on here and I know that they will support you all of the way. I'm sorry you are feeling so devastated and it's ok to feel like you have crumbled, you're doing the right thing for your son and the fact that you are wondering whether you will cope shows how much you care and you will find those reserves of strength. Lean on your husband for now if he is coping well and take the time to gather your strength because you know y

You know you will do whatever you need to to get what's best for your son x

Welcome to the board. My DS has asd and is in mainstream part-time. Even when you are prepared it can come as a shock to have your concerns confirmed by someone else, even if they are not in the least qualified to say anything.

Diagnosis can take a long time but is not a reason to delay intervention. Look on your council website at all the resources the school can call on - there will be outreach teams for behaviour, communication / social difficulties, ed psychs, speech therapists etc etc. Most schools are expected to put in up to 20 hours of 1:1 support from their own resources and use all this external advice before the council will provide more funding.

There are loads of strategies out there and please know your child will learn and improve with the right help.

Addressing behaviour in a child with ASD or traits can be quite counter intuitive so often people reinforce poor behaviour by mistake. So for e.g. he may not be motivated by stickers / class reward systems and may need to have his own personalised reward system where rewards are much more instant and ones he really wants eg time on computer is popular one. It may be better to ignore bad behaviour and just reward the positive. Some consequences have no impact on children with asd eg having their name on the board / being told off would not necessarily bother them if they are not concerned what their peers think about them; being sent to sit on their own may be a welcome rest from having to interact and a treat! Also not being consistent in the messages they give on behaviour can be confusing for a child who likes rules to be very clear. So the first thing to sort out is a proper plan about what behaviour they are going to target - you can't do everything all at once - and then what they are going to do - and then most importantly they must evaluate if it worked or not and if not try something else.

My son has very good intervention which we fought for before he started school - a boy of the same age in the other class does not have good support. The school think my child is very well behaved and 'a lovely boy'. They think the other child is really naughty. The children are actually very similar but its easier for school to blame the child's personality than themselves for not knowing what to do.

Be kind to yourself and just take it a day at a time.

Thank you so much for your kind words. It really is a relief to talk to someone about it. My HV told us not to talk to family or friends about it incase he doesn't have it because the label will stick.
Also its my DS's birthday in the next 2 weeks & he desperatley wants a party but does'nt really have any friends to invite. It breaks my heart to hear the other parents talking about there childs party knowing that my son hasn't been invited. My husband thinks we should just invite children from school regardless but i know 99% of them won't come. I feel so selfish as i feel i'm trying to protect my own feelings about it.

Why dont you just plan a lovely day out somewhere.

Tbh, I wouldnt bother organising a party for people who are likely to not turn up.

Many children dont have parties and a day with you and his dad can be really special, you can spoil him rotten

How utterly cruel - my heart goes out to you.

You need a swift change of mindset. What this spiteful woman has done is tell you in so many words the following.

1. Your child has some as yet undentified needs (she's entitled to her suspicions but at this age there are a myriad of far less serious wholly treatable conditions that can mimic the symptoms of adhd/asd. Until someone medically qualified to do so tells you to start fretting about ASD don't take this to heart.

1. She has done absolutely diddly squat to help your very young child adjust to one of the biggest transitions of his life.

1. In direct contrast to all teacher training guidance, disability and education law she has been too lazy to ensure that any additional needs your child may have are adequately supported.

She should fear OFSTEAD - a parental letter from yourself to the Inspectors describing her failure to do her job wouldn't look good would it?

suggested next steps.

1. Go to your GP and ask for an appointment with a developmental peadiatrician with knowledge of neurological disorders. Awful though it is, if there is anything wrong the sooner you find out the better the long term outcome for your child. (It may be that you are told there's nothing the matter bar a child made a bit anxious by an unsympathetic first teacher at big school btw!).
2. Go to the school SENCO for a documented meeting where the school tell you what exactly they have done to date to help your child, and even more importantly exactly what they intend to do going forward in terms of support.

- Has the educational pysch seen your child in the classroom yet? If not why not and when is this going to take place? - Is your child on the SN register? Do not walk away from this meeting without a documented & agreed way forward. With Ofstead looming it's in the schools interest to make this happen asap.

While you wait to see the pead use the time to keep a diary of your child's behavior and DEMAND that the teacher does the same. Include in your diary any sensory issues that crop up as it's amazing how often these are missed by schools (eg my son has hypersensitive hearing - causes him actual pain if the classroom gets too noisy - this was mistaken for adhd for years by teachers yet the therapies for the 2 conditions are totally different). You may well spot a pattern emerging over the couple of months it takes to get the pead appointment.

Also go get your child's sight and hearing tested + get the GP to do a general health check just in case there's something obviously physically a bit off. (eg glue ear can cause slight deafness which means he may not always hear the teachers instructions in a busy classroom).

Sleep and diet can adversely impact behavior - this is something else you can look at to keep yourself from worrying while you wait.

Thank you bochead. I'm going to go into school tomorrow to arrange a meeting with the SENCO. I feel like i've got a bit more knowledge under my belt to get the most out of it. At the same time its angered me because its made me aware of how little she has done to help & support my son as none of your advice & info had been done. I'll keep you posted.

www.gov.uk/children-with-special-educational-needs/overview

The link above gives you a quick outline as to the SN process - well worth having a quick overview before you meet the SENCO

The link below is the code of practice, the "bible" (and just as hard to digest). It's well bookmarking for the future in case you need specific advice on a technicality, but don't bother with it just yet or you'll scare yourself silly.

www.education.gov.uk/schools/pupilsupport/sen/a00218772/sen-code-of-practice

I understand exactly how you feel, I've been there. I think what might help is to read as much as you can about ASD and ADHD so you are armed with knowledge to face the route ahead. Since my son has been diagnosed, I have come across some wonderful people who understand and work with ASD children. This forum is brilliant because you can talk about it (my DH was exactly the same about keeping it private for the same reason), get advice and find support. Good luck!

I was you 14 years ago. Hell isn't it. I was faced with a nursery who had 'observed' my son without e knowing and then realed off a three page litany of all his behaviours. Ok it turned out they were right but it was handled badly. My son did things there that he never did any where else or again thus showing how unhappy he was. It is a hard road but you get through it and your son has many fab qualities that will get him through. Do take ADs for a short time to get you over this time you won't need them for ever. Over the years I think Reception was the worst year. He needs some support poor love and clearly the teacher is struggling so you need to start the process. The next year isn't going to be nice but you will get through it. You are the best mummy he's got so look after yourself.

My son is 18 on saturday and is lovely. He's achieved some good things and is great to be around.

We've organised a meeting with his teacher & the SENCO to discuss everything so we're getting the ball rolling. i've read so much information my head is ready to explode. Some of it had really got me in a state. I've read that if he does have it then his baby brother has got a 1 in 5 chance of having it as well. So i feel like i'm analysing his every move as well.
I'm really just trying to take each day as it comes as i've spent sleepless nights worrying about what his teenage years will be like & if he'll ever have any kind of regular life.
Also i feel strong enough to start telling grandparents but really don't know where to start as its such a complex condition & their generation aren't as aware it. Any advice?

Hi sorry don't have much time but you sound like me 18 months ago. A senior staff member bopped me between the eyes with it on his third day in school and sent me reeling. A very confusing year followed, can't really go into it all. To be fair, she was right about him and I am v close now to diagnosis I think. Things are getting better, at home anyway, but my god the year I just had with it all. Get the ball rolling though, I dithered for a bit and it doesn't help! You will be okay, you really will.

Yes, yes, crumbling is quite normal! I did all of that! You've got lots of good advice on this thread so I just wanted to say that what you are experiencing is so familiar. My DS was 8 or 9 when ASD was first mentioned and I couldn't even bear to read about it because all I could see was worst-case scenarios for the future and you just can't see ahead to where it will take you all. Find a good friend or relative to talk to, be kind to yourself and take it little by little. It is a horrible time but it will get better and there are lots of people here who understand.

Give yourself time. No need to tell anyone. Don't tell grandparents yet as there will be a lot of 'he's fine and he'll grow out of ot, he's just a boy....' I could go on. You need to be in a stronger place than you are now to cope with them. School is removed for them so they don't need to know. Friends, family, leave it for now and keep shtum. If you get asked just say 'oh he's getting some extra help at school to help with his literacy'. That covers everything and people get that. If it helps most people don't know My son's diagnosis and i have had people incredulous that he was at a special school (was at mainstream all thru primary but needed OT support for dyspraxia). I scared myself witless reading stuff (some of it very dated) and thinking that's how life was going to be. I wish I'd known then what I know now. Deal with the here and now and he is still your lovely little cuddly boy.

I am at the beginning of the same process, DS1 suspected of high functioning autism. While it makes total sense I still feel quite sad, in fact I came on here to start my own thread.

Bochead gives very good advice.

I am going to suggest that you think seriously about moving schools. We moved from a very strict church school that had poor DS1 not allowed out at breaktime, told him off for sucking his thumb (reception), used super nanny approaches. Basically, thought he was naughty and ill disciplined. I rmember the silly woman who was in charge of behavioural strategies recounting to me how a teacher higher up the school had reported that his reputation would follow him. He was four at the time. I could go on.

Anyway, we moved and he now goes to a wonderful school with people - both class teacher and SENCO who know what they are doing and who stress over and over again that they want to support him, whatever the diagnosis. They have a behaviour management plan that works for him at the moment (happy to provide details) and they are nothing but supportive and helpful to me.

I know it sounds extreme, and I may be off the mark, hopefully it is just that one teacher, but seven years is a long time at school.

Hugs to you and your ds

Levantine if it's not too much trouble please could you provide some details of the behaviour management plan that your sons school has in place. I'm just in the process of writing notes for my meeting with the school next week & want to have every last bit of information & ammunition i can get. Many thanks.

Of course, have been out this evening, will do it tomorrow

Hi Hally, so sorry your son's teacher was so insensitive towards you, but it may be that the worst is now over. As soon as he has had proper assessments you will be able to make sure that he gets the help he needs. If there are any autism groups locally it would be helpful to get in touch with them - you are definitely not the only one who is going through this!

Remember that your son doesn't think there is anything wrong with him and there isn't - he's different, as are all children. Try to keep thing light around him, don't discuss this around him if you can, and try to make sure the assessments don't make him feel that there is something wrong.

Hallo. I am about five minutes further down the line with this, but what seems to have helped my ds is very clear, visual materials.

So he has a home/school book, with the day divided into sessions horizontally and with a line down the middle, for listening and for work. He gets smiles/straight faces/frowns depending on how he has been and at the end of each session he gets something he likes - at the moment it's some Lego time.

He also does some small group work around social skills with the Senco - don't know much about this.

His old school was inconsistent with their approach, sometimes using 'supernanny' (their phrase) approach of removing him from class all the time. Also they used to keep in at break which was a disaster.

If I could do one thing differently it would be to insist that the school got in support earlier - they did get him assessed by an educational psychologist (at my suggestion) about five weeks before he left.

I would politely put it back on them, this isnt working for ds, how do you suggest we can work with you, we would rather access professional support sooner rather than later etc

I am absolutely no expert, I am sure others will give better advice. Very good luck xxx

Sorry, should have said if he gets smiles in both listening and work he gets Lego, if he gets frowns he doesn't get punished.

My ds has just turned 6 though (yr 1) I don't know if this would have helped last year

Hi. I've always thought my son to be a handful and this was reinforced by feedback from his nursery. He started school in September and we were advised there were concerns about 'his level of understanding' at our first parents evening, this has now escalated to him being referred for a special needs assessment. He is very active, has difficulty sitting for more than 5 minutes, doesn't have good listening skills, will argue his point if he doesn't agree with you etc etc. I always thought he just didn't want to do what he didn't want to do, and it was up to me/nursery/school to bend him round. I am so deeply troubled by it all I am struggling to cope. I do feel the school are doing their very best for him, but even this isn't reassuring me at the moment. I'm doing my best to be calm and patient with my son but it's so difficult. From what I've read it sounds like we have a long road ahead before we get a diagnosis (18 week wait in my area) and then guess we have to learn what works best for him, I see no light at the end of the tunnel.