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Scared, devastated & helpless

(34 Posts)
Hallybear79 Tue 29-Jan-13 20:57:40

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?

Levantine Thu 07-Feb-13 20:35:55

very pleased to hear it!

Hallybear79 Thu 07-Feb-13 20:19:23

Well i'm pleased to say we had a really productive & positive meeting with my DS's teacher & SENCO. I went with a list of procedures, policies that should be set in place etc but didn't need to refer to my notes once as they brought them all up & between us have come up with ideas for an IEP & discussed what will happen next & all the ways we can support him. I feel like its a really posiive step & just got to wait until next week to see the GP & get a referral for the next part of the rollercoaster. Finally feel like i'm doing something constructive to help my beautiful little boy. Thanks again for all the support & knowledge you've all given me.

Samantha9136 Mon 04-Feb-13 19:44:26

Hi Hally, Good luck for Thursday. I'm also trying to take things day by day as I too have worried myself sick. We saw our GP this morning and she gave us some good advice to help keep the situation calm. So have just tried to go with his flow a bit more today. Today has been a better day, I have a 4 month old son as well and a calm home is obviously going to have a better effect on him too. It's a worrying time for us but we care for our children and we're doing our best for them - keep telling myself can't do anymore than this.

MadameSin Mon 04-Feb-13 18:29:37

Hally haven't read all thread, so hope not repeating anyone. My son is now 9 and got his ADHD dx aged 7. His teacher thought it would be a good idea to call me into the office 5 minutes before i was due to spend an hour with the kids reading 1-2-1 as a parent helper. She looked hurried and uptight .. said something to the lines of "I'm setting your ds up to fail, there's something wrong with him, think it's ADHD but he's definitely got something". I felt sick to my stomach, in total shock. I was shaking all afternoon and had to wait until I got home, shut the door behind me and locked myself in the loo where I sobbed for 10 mins. It was the worst day of my life. Nothing has compared, not ever the formal dx. Some teachers are just shite and they need to be told. I took the OFSTED inspection as an opportunity to let them know what my experience had been. You should get a letter from the school detailing who the inspectors are and an address should you wish to write to them. I saw one of the inspectors around the school and handed it to her directly as I did not trust any staff not to open it first. Their SEN report came out satisfactory, not good as they had had before with some very strong recommendations. I suggest after you have spoken to HT and SENCO about your concerns, you write the letter when you get the opportunity. Made me seethe when I read this. Good luck!

Hallybear79 Mon 04-Feb-13 13:47:13

Thanks again Levantine. My meeting is on Thursday & i'm all prepared so going to try & just have a bit of "normality" for a couple of days (famous last words). I've spent the last 2-3 weeks constantly thinking & worrying about autism 24/7. Just really want to enjoy my family again.
Samantha it sounds like are stories are very much the same. It's so reassuring to know i'm not alone in such difficult times. Also its great to keep in touch on here as i've already had some excellent advice & its good to compare notes about the "system". As i keep telling my husband (& myself), you just have to deal with a day at a time to keep yourself sane.

FightingForSurvival Sun 03-Feb-13 21:03:09

Hi between 3.5 and 5 my son was a nightmare and then all the probs in school. Delayed speech, poor comprehension, massive meltdowns and anxieties, a really really rough time. Things are coming together, we have the diagnosis and I think we will get the statement but more importantly he just seems to have developed a bit more understanding and maturity and he's been quite a poppet lately, I can see progress. Hang in there, I reckon things will get better for you but I can honestly say last year was a dreadful year! Not quite sure how I've got through it tbh but we are stronger than we think ;-)

Samantha9136 Sun 03-Feb-13 20:57:15

Thanks FightingForSurvival - I just don't know how to turn the corner. We spend all our time with our children, have routines, praise and encourage him, try to be firm and fair. Just don't know where it's gone wrong - he just seems angry or something - almost like terrible two's - constant frustration. I don't know which special need this would fit into which I suppose it feeding my complete desperation as I have no idea where a diagnosis is going to take us. Sorry I sound so negative but feel at a complete loss.

FightingForSurvival Sun 03-Feb-13 20:43:41

Hi Samantha. There is light at the end of the tunnel. I think it's incredibly tough when you have a little one in school without a diagnosis. I have just had the year from hell, but things are looking up now. We are going through statement process, just got diagnosis but best of all seem to have turned a corner with my lo behaviour wise. He still has all the same probs but things have got a bit easier.

Samantha9136 Sun 03-Feb-13 20:16:47

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.

Levantine Sun 03-Feb-13 16:27:01

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

Levantine Sun 03-Feb-13 16:25:47

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

pollypandemonium Sun 03-Feb-13 12:44:55

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.

smile

Levantine Sun 03-Feb-13 00:26:02

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

Hallybear79 Sat 02-Feb-13 19:38:41

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.

Levantine Fri 01-Feb-13 12:02:18

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

Inaflap Thu 31-Jan-13 18:09:25

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.

WillowinGloves Wed 30-Jan-13 23:57:07

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.

WadingThroughTreacle Wed 30-Jan-13 21:09:14

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.

Hallybear79 Wed 30-Jan-13 20:12:16

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?

Inaflap Wed 30-Jan-13 18:26:30

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.

Mollyweasley Wed 30-Jan-13 18:02:10

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!

bochead Tue 29-Jan-13 23:19:58

https://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.

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

Hallybear79 Tue 29-Jan-13 22:56:42

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.

bochead Tue 29-Jan-13 22:09:50

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.

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

3. 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.

Ineedmorepatience Tue 29-Jan-13 21:49:20

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 rottensmile

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