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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?

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.

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 20:57:15

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 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 ;-)

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.

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!

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.

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.

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

very pleased to hear it!

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