Hi am New, scared and overwhelmed

I know what you mean...it can be so frustrating having to explain what seems very obvious to me to my partner then scratting about for paper to write it down so he doesn't forget...then I see how ard he is trying and I feel awful for getting irritable.

It's not like he can help it and I am guessing that once I get in to a habit and routine of doing this it will become second nature and I will be less verbal in my instructions. 

I have ordered some books which are supposed to be practical in helping you plan things more successfully. It's just that when I feel ill myself I just wish every now and again someone else could take the reins..but that is probably what most mothers would say anyway and I am no different despite our circumstances lol.

We'll get there in the end

J

x

Hi Oatcakes, I'm new too.

When I read your first post I was overwhelmed - it could have been me writing it!  My 4 year old son was given a diagosis of High Functioning Autism a few weeks ago.  He has the tantrums, the aggression everything that you said - but he can also be lovely, funny and very clever.

He is due to start school September, and the Induction day was a nightmare. 30 parents and 29 excited children in a classroom (29 because my poor boy was in a crumpled heap under my coat).

I am trying to find strategies to help him cope in September, but I am on a long waiting list for CAHMs so haven't had any advice from them yet.

My 11 yo son is Aspergers.  My husband, after reading the info about ASD and Aspergers now agrees that he himself is on the spectrum - probably Aspergers.  There are not many people who know what it is like to have to deal day to day with an Aspergers partner as well as ASD children - the tension in my house is unbearable at times. He tries hard to help, but its like I have to manage him too.

I really have to bite my lip sometimes when yeat again my husband doesn't know which child is doing what or has to be collected from a certain place - he syas hew can't take in and process all the info, so now I write lists everyday.

Anyway - I've just found this forum and it feels like I've won the lottery - other people with the same issues!

.

Gosh am so glad I found you guys..I am beginning to feel less of a lunatic...sometimes I have just felt..'Am I the only one who can see this isn't right'.

The hardest thing to get your head round..well one of the many things..is the contradictions in behaviour across the spectrum. Somethings seem quite clear and others seem to vary from individual to individual..so one minute you're thinking 'hang on that's typical AS' etc and the next 'oh that doesn't quite fit my idea of it'.

That's for explaining the jargon I will get there. I know what you mean about the short cuts..we have seem that already with the physical illness side of it..I have had to go in and say 'this is what our kids need now'..but to be fair once I have voiced it including part time schooling at times. the school have just said 'yes if that's what you think is best for the boys right now then that is what you need to do'.

I did speak to DS teacher about the violent outbursts and asked her if she had any suggestions about what we could do between us to help Owen and she was at a loss. She said I know you are worried about him becoming isolated and I am too but I don't know what to suggest as you are doing everything I would have suggested already. She then went on to say that she thought perhaps it was understandable because he had had such a lot of trauma.

So the physical illness may have thrown them off the scent a bit..which is no fault on their part..both boys have been through such a lot.

I have the chance to talk through the school reports before term ends so may broach the subject then..I feel a bit foolish incase I have got this all wrong and they just think I am neurotic.

Thank you for the support I do appreciate it.

x

Hi Oakcakes,

I'm new to. Just wanted to say a big hello to you.

lIke you, I also felt very alone in what feels like an emotional nightmare of a situation. Hang in there. Keep smiling and come chat to us

Take care,

Catherine

Hi

Sorry should not have used the jargon, it stands for Individualised Education Plan.  It is a bit like an action plan focussing on about 4 points with realistic aims/goals and details of how the child will be supported to try to achieve them, you both get copies and you have input.  It is useful to have this in place incase you do want to try for a statement and support later on.  They also highlight to teaching staff that your child does need support and has some emotional, social difficulties.

The fact that the teacher can see he has anger and can see it is frustration rather than being wilful or "naughty" she has picked up on his needs already. You could focus on how grateful you are that she has recognised his needs and say what can we do together to move it on so that he gets a fair chance at his education and his mental health does not suffer.  I know this may sound a bit hard hitting but as I am sure a lot of parents will agree, you have to be at times to get results as quickly as possible for your child as unfortunately the normal processes take forever and you will be fobbed off given the chance.  Sounds like you have a teacher willing to listen which is great.  Look up "Every Child Matters" if you get a chance.

Think that is you busy for the next 3 months so best leave it at that.  It is no wonder we burn the midnight oil!! 

You are doing great doing your best for your family.  They are lucky to have you.

Hi Oatcakes,

I know just how you feel. My daughter is 11 and has been arriving home angry, fed up, confused for as long as I can remember! There have been days when I've dreaded picking her up because I just don't have a clue what sort of mood she'd be in. However according to her primary school she's the perfect pupil, top achiever, the only comment I've ever had is that she lacks concentration at times (we now know that it's because she can't maintain eye contact which makes her look distracted!) So she'd hold it all in at school then have an absolute meltdown once she got home!!

After years of pushing, she's just had her initial assessment through Cahms and they've suggested there's a strong possibility of Aspergers, we're waiting further appointments.

Apparently the school/home thing is not unusual, I really hope you get some great help and advice and that your son can get to grips with school.

Take care

Andrea

Oh thank you that moved me to tears..I didn't realise I could speak to the school without diagnosis..I will ring them next week and make an appointment. Both my sons have severe respiratory problems so I have had to do care plans for that etc and keep the school informed of their health issues relating to this regularly . SO I have quite a good rapport with the head etc..and I am well known to them I guess !

The school have often said they wondered if DS problems were related to all the hospital admissions (he has has severe obstruction to breathing many many times)..and we all thought it was the trauma..which it still of course could be..but like you say given my partners issues we may have been overlooking DS other symptoms due to coping with the acute admissions too. But my other son has settled and is very sociable..it's a good happy school and I see DS watching and puzzling over how his brother has made so many friends and why he can't 'get it right' with the other kids.

I adore my partner but it is hard to know the best way to get him to participate fully with the family at times..but I am getting better at this now I know he's ok as long as I do lists and plans for him...wish I'd known that 7 years ago lol.

I am not sure what and IEP is sorry? So I suspect we haven't got one. DS likes headphones a lot so that would work well if the school can go for it.

OK I will speak to the school before they break up and see how that goes..then cahms will come in August to talk about what issues we have. I feel better now I know I don't have to wait for diagnosis..thank you so much I can't tell you how much this is helping me cope and feel less alone.

xxxxx

Hi

Poor you, that is tough to deal with on a daily basis.  Nothing hurts more than seeing your kids hurting and us parents feel that pain.  I totally relate to all you are saying.  My son is 9 with HFA and our first year in Reception was one of our toughest. 

It is great that you have Cahms involved.  Just incase you have not already, push to get to the Educational Psychologist, Speech and Language Therapist and a Paedatrician involved as they will need to give the input on the diagnosis so the earlier they are involved the quicker it will be and any statement process that may follow.  The SENCO at school should be able to make a referral to the Ed Psych.

School can start making adaptions now for his needs without a diagnosis.  Does he have an IEP?  Quiet place to go to when the background noise is too much or a special desk away from the main tables which would reduce it to some degree?  Some kids have headphones to put on when it gets too noisy.  The other kids accept these differences without questioning it if the teacher simply says something like "joe does not like it being too noisy so wears his headphones sometimes to make it easier for him to concentrate". This is a great time for school to plan some adaptions for his next school year and consider transition for the next class.

The NAS parent support group in your area may be of benefit to you.  My partner also has HFA traits and I love him dearly but it can be tough at times to live with.  It is important you get some support for you.

Loads to do and think about, but take it 1 step at a time and you will get there together.  Keep your chin up and be proud of yourself doing all you can for your son.

It wasn't as bad today (mainly I suspect because it's Friday)...although angry and frustrated he just growled a bit and I could see he was making a huge effort to not shout at me. Bless..but how hard must that be?

I got the school reports today and the teacher says once engaged he is an eager learner and very bright, loves books and has a very caring side, she did add that often he will talk at length about things that are not relevant to what they want. He is a complex chap..he can be utterly sensitive to younger children, and to me at times (I am ill quite a bit and he tries so hard to help).But he can be very violent and aggressive too for what seems very little reason..he's head butted me and his classmates.

I think you are right about too many demands and too much noise..he is extremely sensitive to noise and light..says it hurts..I have severe migraines so I understand how you can become over sensitive to stimulus like these..at first I thought maybe it was migraines in my son but obviously now I am getting to grips with my partners problems things are making more sense.

My boys not SEN'd as we are only just at the start of the process, I am hoping we will be well on the way to sorting diagnosis out by the time the new school year starts but I realise that's ambitious.

Thanks for the links I will look at those with great interest. I really appreciate you taking the time to write.

J

x

Hello Oatcakes

Sorry to hear you are going through a rough patch.  I havent been through exactly the same (ie relentless screaming) but I have been through my son being unhappy and frustrated at home and at school.

We eventually ended up setting up our own school for children with autism here in Oldham, as we couldnt find a placement that really understood him and met his needs.  Your son's teacher sounds understanding - which is good.

You havent said whether your son has a statement of Special Educational Needs - if not, that may be something that could help as it looks at a child's needs and what sort of educational placement may be best to meet the child's needs.

The other thing that helped us as a family was an autism intervention that helps parents to help their children develop better social understanding, improve their emotional regulation and work on the rigidity that is at the heart of autism.  We are now using the principles and practice from this intervention in our teaching approach at school.

What I like about this intervention is that it doesnt use external 'therapists' (like many other interventions) - the whole purpose is to help parents to help their children.  It enabled myself and my husband to become better parents and enabled us all to communicate better as a family.  You can read about it here if you'd like to know any more: www.rdiconnect.com

If your son is saying ''all the people talking all the time..it really bugs me mummy" this may be a clue that too many demands are being made on him and/or he is having difficulty processing lots of information (the different people talking) at once.  Both of these difficulties are common in autism....my son has experienced both of those difficulties, and still does, although this has improved over time thanks to our work at home and at school.

I'm sure other people will also offer their experience of what's worked for them.  I hope that is a helpful start.

Zoe

Hello Oakcakes and welcome to the community.

It sounds like you are facing a number of difficult situations at the moment with both your son and your partner.  Hopefully other community members will be able to support you and provide both practical and emotional support where they have been through similar experiences.

It sounds like your biggest concern at the moment is with your son and diagnosis and support in school.

You might find some of the NAS information and services useful:
Our Education Rights Service might be able to help you in thinking about other ways he can be supported at school to try and avoid the difficulties you are facing after school:

www.autism.org.uk/educationrights

Also, you might find it useful to contact our Parent to Parent service which may be able to talk you through some of the specific problems you are experiencing and suggest some ways forward:

www.autism.org.uk/p2p

Hopefully these will provide some useful information to you and I’m sure other members will also have ideas they are willing to share.

Alex - mod