Is there anyone here that can help??

Hiya Sanders :)

thank you so much for your post. its so sad that we all have to go through this period of overwhelming stress and frustration isnt it? ive been feeling far more positive that things will resolve since joining the NAS forums, and it has given me strength to stand my ground whereas normally i would try to be too polite about it and through it have my thoughts on my childs needs ignored. Things are going really well dare i say it this end at the moment. I can cope with Callum n Brad, im there mum and theyve never been any different but as they age they mingle with more people and that then means more opinions etc etc which doesnt help situations. Im sorry youve been having a hard time of it lately but its fab news about your support group!! i wish you all the best with the school meeting as i know how hard they are :/ i check the website daily, so if youre ever on and fancy a chat it'd be lovely to hear from you and how you are all getting on :) thank you so much for your post :) best wishes Lisa.

Hi there , 

I have just read your very first post and i've got to say that you sound just like me a few months ago ..we are still waiting for a full diagnosis and we have good days and bad days ....today for me is a good day ..i attended my very first carers support group and the relief i felt talking to other parents with children just like mine has been unbelievable ...after a few trying weeks i feel as if a weight has been lifted off my shoulders and has made me a little stronger for the meeting i have at his school today ..hope this has given u a glimmer of hope that there is people out here just the same as u xxx

Hello romariosmummy,

I'm sorry but I've had to edit out your link to facebook. Unfortunately we have a strict rule against users sharing personal contact details. I hope you'll understand that this rule is in place to protect all of our users and we are not able to flexible on it at this time. Thanks.

Sandra - mod

Not a problem my son is 7 he will be 8 in january

Hiya Romariosmummy,

thank you so much for your post, ive been meeting so many lovely people on here, it gives me alot of hope and energy. It can get so stressful at times cant it?! how olds your son nif you dont mind me asking, is he primary or secondary? Im glad you have found a school that he is settled in. We have made some head way with their school and am slightly more positive that this will enable better communication to tweak things as we need to with the educational needs and emotional needs that they both have :) hope you are having a fab evening and thank you so much for posting i really appreciate your support and advice :) best wishes, Lisa :)

This sounds a lot like my son he has autism and adhd also, we exhausted the mainstream route and he is now in a special school he has full 1:1 the full school day every day and 2:1 when on trips. He now has a male TA and it's helped a good bit. It is a lonely exsistence having a special needs children as other peoples level of understanding you and your childs lives and needs is low. I'm always here if you need a chat and you can add me on facebook if you like, you arent alone ill be here for as long as you need me *** link to find me on facebook

Hiya :)

Well thats fantastic, surely that would benefit all of you and meet your childrens and your needs? I would be very inclined to look into it more, sit the kids down and give them the options and together work out something that is great for you all. Aww yeah i imagine that he mightve noticed that something wasnt quite right with the reaction. So maybe now you have reitterated it to them that they might have a better understanding, sometimes i find it is literally just repeating it over and over and showing in different ways until it clicks. I know it hurts when you see your little ones trying to make friends and fails, but i do try to look at it and think well actually it is awful BUT it isnt stopping him trying again and again and again and again, its when someone give up hope that all is lost :) Does your school have a 'buddy' scheme? in ours they have buddys, and their job is to look after / play with kids who are not having as much fun on the playground as they should be, or the other scheme we have at ours is like a structured play activity leader in break times so everyones always involved and they learn about appropriate friendships etc (however this didnt work for Callum as he is very boisterous, head strong and stubborn!) Speak to the school if they havent got this scheme maybe they could try it? I do get tired mentally more so than anything else, and generally its about other people inrelation to my boys rather than my boys themselves as they have always been who they are, so meeting their needs has always been the same, its others annoying and ignorant behaviour and comments that grind me down. Im here anytime you want a chat, im on the comp at least once a day :) hope you are having a good evening, Lisa :)

This is so weird. Our school has just announced they are looking at a pilot scheme where people can flexi school their kids. Basically as long as you register your child at the school and attend at least one day in 10 then you can take part in the activities. Feels like a light at the end of the tunnel...I coulnd't believe my luck.

O has denied he 'showed' his bits but I can tell he's hiding it from me LOL. So I spoke to both of the boys and explained it's rude and can upset people..I think some of it hit home. Finger crossed. The situation you described would be what I expect to have happened with my son..the girl he flashed at he is a bit sweet on so he was probably trying to make her laugh and it backfired on him.

The other parent was very nice to me on my return to school this afternoon, which was good and I appreciated they did it very discreetly (despite my embarrassment).

The saddest thing for me is watching O trying to be friends and failing..breaks my heart BUT I do think it's the kind of school where they will try and include him and make allowances when they finally understand what the real issues are.

He been strressy again tonight but I coped better..you just get so tired don't you?

Thanks for sharing I have found it helpful to hear other parent have had these issues and that they passed.

Sending best wishes back to you too xxxx

Oh no :( well my eldest son did that a few times too, but thankfully hasnt done it lately. From what I  could understand it was his way of being 'silly' or 'funny' but didnt realise how inaproprite his actions were. Sometimes it was because he was in an awkward situation, for example one day a group of girls were laughing at him and being a bit nasty so rather than the obvious action of being cross or running off etc, he flashed. Ive been speaking to some really helpful people on here and from what i can gather its just best to treat them as a normal so whatever you do like time out, use a cross voice etc do it and then explain after. Youre right we do just have to keep trying and stick with it, if your unsure put posts on here someones bound to be able to help! You need to look at all the pros and cons of school and home school, not just short term but the long term. As much as i would love to keep my boys home me and my husband feel that they need to be out there in the big world where they have to experience things alone as we hope this will help them to try and pick up on acceptable / not acceptable behaviours, rather than them getting into adult life and still not understanding social rules etc. Apart from this we hope that it encourages them to enjoy friendship where they can, and to experience things that we couldnt provide at home. Its a big job and i honestly couldnt do it, i mean especially say if i was ill etc to keep two kids on a school timetable would be trying, especially with lots of distractions like tv, phone, my baby screaming. But you need to do whats best for your kids, i know you say you think the one may wish to stay at school, would it be possible to so part time school or something? that way he could get the playtime etc with friends? Try not to get disheartened, i know its far easier said than done though! Sending best wishes and hoping your week improves  :)

Great after saying all that I get stopped at the school today to be told my son exposed himself to another little girl on Friday..now I feel like laughing and crying at the same time?

SO where do you separate the 5 yr old from the ASD child? Should I even try? Also I thought he had exposed himself to someone at the park yesterday but I wasn't sure. I am at a loss but I think he thinks it's a funny thing to do for some reason.

I will speak to him but I am unsure as to whether he will get what I am saying. All we can do Lisa is keep plugging away for answers (not that we will ever have them all).

I feel uncomfortable about collecting him from school now incase he's had a bad day (tricky weekend all round here). If I am competely honest I am not sure whether school will be suitable long term and have been looking into home schooling for a number of months now. I am undecided as I have his twin brother to consider and I do think my other boy likes the social aspect of school more.

Today I saw my 'ASD' child pick an argument another child (common issue for us) because he believed he had brought toys into school when 'it's not allowed'. It was actually show and tell day but my son had forgotten. The other child (bless him) just went 'Oh Owen' and walked off shaking his head. Probably the least negative thing a 5 yr old could have done in the situation lol. Then O stands there looking all bewildered and hurt. He can't understand that he's very irritating to other people when he shouts in their faces like this. SIGH.

Sorry not  a good day and I can see it may be trickier as the day wears on as I know he wasn't in a good place to start with today.

We will hang on in there. I hope you get some quick responses soon from any support staff you are waiting on. The sooner the better really for you all. Keep ringing and asking, as people are busy and it helps then keep you in mind if wave your little flag now and again.;)

Speak soon

Oatie

Hi Oatie,

Thank you so much for your post :) its been amazing and so refreshing to meet such wonderful people, who are so helpful. its awful isnt it when they say such inconsiderate things. Im glad that you and your son are moving forward happier, thats what i am aiming to do, and i think there may be light at the end of the tunnel for us too :) I think as parents its our biggest worry apart from health for our kids is happiness, and when they appear so angry and frustrated and hurtful its awful as you just want to help them feel happy but its sometimes not that easy is it. I, usually quite a confident, outspoken person, and nothing tends to phase me, but i think ive just been ground down and the feeling of helplessness started to set in. But i have made some headway at school, it was a rather emotional day prior as it was my sons birthday who we lost some years ago, so where as i would generally pick my words well, i spoke my mind instead, and it worked! the school saw where i was coming from and the pros and cons of the situation we are in and its renewed the team and i now feel we are all walking forward together in this. Im struggling at the moment as me and my partner took the view that as it has been said unofficially (by the screening nurses and workers etc but not on paper as a diagnosis as yet) we decided not to say anything to the boys, and only to people on a need to know basis who have close contact with them as we wanted to have it right in our minds before sitting with them and explaining so that any questions they have we will hopefully be able to answer a little. I do feel the injustice of other peoples actions and i need to let it go, and be a little more like you and not care, as i used to be like it but we all have stressed times so maybe thats why. I really hope that your assessment comes through quickly and that you carry on making good progress understanding the triggers and that he continues to improve. Ive found some fun family outtings have really helped take the pressure off where its just us, no ignorance, no worries just us and the outdoors really gave us the laughs that we all needed, and a boost forward. wishing you all well and thank you again so much for your help, i look forward to hearing from you soon! keep in touch all our best wishes to you, Lisa :)

Hi Oatie,

Thank you so much for your post :) its been amazing and so refreshing to meet such wonderful people, who are so helpful. its awful isnt it when they say such inconsiderate things. Im glad that you and your son are moving forward happier, thats what i am aiming to do, and i think there may be light at the end of the tunnel for us too :) I think as parents its our biggest worry apart from health for our kids is happiness, and when they appear so angry and frustrated and hurtful its awful as you just want to help them feel happy but its sometimes not that easy is it. I, usually quite a confident, outspoken person, and nothing tends to phase me, but i think ive just been ground down and the feeling of helplessness started to set in. But i have made some headway at school, it was a rather emotional day prior as it was my sons birthday who we lost some years ago, so where as i would generally pick my words well, i spoke my mind instead, and it worked! the school saw where i was coming from and the pros and cons of the situation we are in and its renewed the team and i now feel we are all walking forward together in this. Im struggling at the moment as me and my partner took the view that as it has been said unofficially (by the screening nurses and workers etc but not on paper as a diagnosis as yet) we decided not to say anything to the boys, and only to people on a need to know basis who have close contact with them as we wanted to have it right in our minds before sitting with them and explaining so that any questions they have we will hopefully be able to answer a little. I do feel the injustice of other peoples actions and i need to let it go, and be a little more like you and not care, as i used to be like it but we all have stressed times so maybe thats why. I really hope that your assessment comes through quickly and that you carry on making good progress understanding the triggers and that he continues to improve. Ive found some fun family outtings have really helped take the pressure off where its just us, no ignorance, no worries just us and the outdoors really gave us the laughs that we all needed, and a boost forward. wishing you all well and thank you again so much for your help, i look forward to hearing from you soon! keep in touch all our best wishes to you, Lisa :)

Just wanted to add I can relate to what you are saying a lot. We haven't had the assessment yet for our child and he's amass of confusion.

The hurtful remarks and ignorance are the worst for me too. I do feel I am getting to understand my son better and things are improving for him..other people well they believe what they want and I am getting more thick skinned. I no longer apologise for my son but openly say 'he's awaiting assessment for possible autism and he is a very confused and angry boy at times, please bare with us'. Generally this has been well recieved. 

We moved schools which has helped to an extent. They do vary tremendously but them apportioning blame on you and your sons will not help anyone..not even them. Do not be afraid to keep looking and trying. Get the support worker to attend all school meetings where possible.

I am thinking of you and everything you said made sense to me.

Take are

Oatie

Hi Sandra :)

Ok.. i can deal with a year :) I hope! well i spoke to Callums worker about a week ago and she was saying its really waiting for the phsycotherapist appointment. I got the impression that that was it then? but i may be wrong as im quite emoitional with everything whirring around at the moment as ive never been one for been able to stop my overactive brain! I mean Callums worker is outstanding, she is really trying to speed things up and as it seems the panel agree with her reasons due to the danger of him hurting himself or others, so i know shes going as fast as possible so like you say its going to be a waiting game :/ but we have to be thankful that its been recognised as theres got to be so many out there that just struggle along so in that sense i think we are very fortunate. thank you so much, hope your having a lovely evening :) Lisa

Hello Lisa

I'm sorry I don't know how much longer you're going to be waiting, I can only say that with my children it took many months but less than a year from first concern to diagnosis. Here's some website information about what to expect during the process:

http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-the-process-for-children/diagnosis-what-to-expect.aspx

Could you ask any of the professionals who've been involved with your sons so far if they could give you some indication? Alternatively if you have any specific questions or concerns about the process you could try calling the Autism Helpline (you can find the details through the link above) who are very helpful. I know it seems like a lifetime when everything's hanging on this important outcome. Thinking of you.

Sandra - mod

Thank you so much for your post :) it means alot :) I just feel so awkward at the moment as although theyre saying that Callum has Autism and ADHD i feel like a fraud been on this forum or speaking to anyone until its on paper. I know this sounds absoloutely awful but im so thankful you can relate to what i have wrote, as to most its like im speaking a different language. I think part of me doesnt dare believe that after 4 years of hell (not by Callum and Brad) but by others peoples actions, words etc that I might just be able to say actually, Callum isnt naughty he just sees things differently and Brad may not be able to concentrate but hes achieved alot in his 7 years. Some may feel that I shouldnt need a diagnosis to say and think this, and I dont, but when youve said all you can possibly say to ignorant individuals and youve taken as many stares, sniggers and hurtful comments as you can, youre left exhausted, hurt and alone. I keep going obviously for the kids and i never let on how I feel as kids should be kids, happy and carefree! but inside im am crumbling, im hurt, frustrated and worried. I know that once I have it on paper it will ease the load, in the sense i wont feel bad about being on here, and i will be more than happy to go to groups and places like S.N.A.P  but in the meantime we're stuck in limbo. Do you know how much longer in the process we have to wait? I know Brads got a long long wait but Callums extreme. Hes been screened twice, been to panel and is an urgent case (words of the panel) and is now waiting for the phsycotherapist? are we talking months or years do you think? Thank you so much for listening to me wittering on, I feel alot better knowing someone out there knows whats going on and the frustrations that all our little family feels. Best wishes, thank you so much, Lisa :)

Hello Lisa

Reading this has brought a tear to my eye and reminded me of the difficult times around diagnosis. I'm absolutely certain many of our users will also understand how you are feeling. It's such an uncertain time and there's so much to figure out. I wondered if you might be interested in looking to see if there's a support group in your local area, you can search on the Autism Services Directory:

http://www.autism.org.uk/en-gb/directory.aspx

That might be a good way to meet similar families locally and feel a little less isolated. You could also try the NAS Parent to parent service:

http://www.autism.org.uk/Our-services/Advice-and-information-services/Parent-to-Parent-Service.aspx

You'd be able to chat through your situation with another understanding parent, if you think that might be helpful. Also, here's a link to a booklet called "After Diagnosis":

http://www.autism.org.uk/about-autism/all-about-diagnosis/after-diagnosis.aspx

You might find some useful information in there, and further details about other services provided by the NAS (the section on education may be of particular interest to you right now). Of course, if you have any questions we can help you with here please let us know.

I'm sure our users will have more advice and understanding to offer too. Wishing you and your family the best.

Sandra - mod