Had a diagnosis 2 weeks ago can I have advice please?

[queencat]

My 7 year old daughter was diagnosed 2 weeks ago with ASD possible DCO and ADHD.

I had to go private in order to get a diagnosis. However my ex-partner does not believe the diagnosis.

He tells me that I have paid to hear what I want to hear and I just can't handle my daughter.

I really don't know what the next steps I should take are: ex partner aside, I am continuing down the route of trying to get help and have been referred to see and OT.

My question are:

1. How do I handle my daughters behaviour. She is high functioning and to an outsider would just appear naughty.

1. How do i cope with this? I am finding it very difficult to cope with I suffer from depression and have self harmed in the past and have felt utterly suicidal lately.

1. How do I handle her siblings? They see her as getting away with being badly behaved.

All I seem to do us shout. I don't feel like I'm the right parent for the job. She is apparently very well behaved For my ex and his girlfriend.

I have not been capable of coping with much since my partner walked out on me two years ago but desperately want to turn this around but don't know where to start.

Insanityscratching suggested here would be best thank yoy'

Welcome :)
First of all I bet you anything she isn't well behaved for your ex, he is just being a pain. Lots of people will be along soon with plenty of practical advice. One of the best things I found to help me with ds (6 AS) and dd (4 NT) is 'how to talk so kids listen and how to listen so kids talk'. It gave me so many ideas on ways to deal with my dc without shouting and I credit it for changing our lives two years ago when his behaviour was grim and I shouted constantly. It helps you deal with the complaint about children being dealt with in different ways too.

Ah, the old "But they're fine when they're with me" line.

It's really quite common for children with ASD to behave differently in different settings, so don't assume that if your dd is ok elsewhere that the problem is you. Sometimes it can work in reverse too. Difficult elsewhere but great at home.

Depending on the age of siblings, I would sit them down and talk to them about what ASD means and what effect it can have. I think there are also books out there which are written especially for siblings, but other posters on here will probably know more about which ones are the best ones for different age groups.

Sometimes it can help to acknowledge that yes it does seem unfair that X doesn't get into trouble for something when the sibling would be told off for the same thing. Again, it depends on the age.

Being around others in the same situation can help, so see if there are any support groups in your area - either specifically for ASD or general SN groups. Ours arranges activities for the family but also has groups specially for siblings of children with SN.

Those may seem like big steps to take right now, especially as you suffer from depression. I would say that the best place to start is by realising that you really are the right person for the job. It's easy for your ex to sit back and criticise you because he's not the one who is doing all the day-to-day work and having to think ten steps ahead every time you want to do or plan something.

You're the one who stuck around two years ago and got on with things, even though it was a big job to take on by yourself.

At the risk of sounding patronising or trite, I would say that the first thing you need to do is to give yourself a bloody big pat on the back for hanging on in there for the past two years. :)

queencat
first of all, well done to you for pursuing a diagnosis for your DD at what must be a very difficult time for you.
Ignore ex's reaction....he has to say that to make himself feel good. Is he your DD's dad?
It may be true that she behaves marvelously for him.....well, she feels secure enough with you to let it all out, doesn't she? That you will still love her regardless of what she does?

I second 'How to talk' as a resource. It took me from a regular routine of shouting in the morning just to get to school, to having no problems at all in the mornings (slightly boasting there). It does require work from you in the beginning, but as kids adjust to your constant attention to their good behaviour, it becomes self-perpetuating.

And as for how will you cope? It seems to me that you are already coping with the worst of this. Getting a diagnosis, even when you have lots of concerns, is still a blow. And now that you have that in your hand, you can go after help for her, at school and with OT/SaLT etc

Get on the autumn terms Earlybird plus course (before she turns 9). Most areas run then as a partnership between the council and the national autistic society. They usually give 2 places for family and one for school, so perhaps ex-p, your mum or a big sibling could come.

Thank you for your help. I will get that book.

I have not had any other feedback from the doctors after the initial appointment but have been referred to see an occupational therapist. Can you please tell me what an occupational therapist
will do and how they help?

I don't know what the wait time is for the appointment and can no longer afford to continue with the private appointments (that was a loan from my dad).

As for me, I will go back go the doctors and see if I can get some
Anti depressants.

Can you please tell me where you started when you got your diagnosis?
And how you implemented the changes?

Thank you again!

An OT working with children will use play to work on issues that the child may have whether these are play skills, development of age appropriate skills, sensory processing problems, handwriting etc etc

When I got a diagnosis, I prioritised. I found it overwhelming as there is so much to learn and new agencies in mine and DS's life. I started with home TBH (as above with the How to talk). Then I started on getting help for him in school. Next was sorting out OT for him. Some people can do all of that at the same time. Do what you can as you can for her.

Can you talk to the school and the SENCO?

Hi

I have emailed the school however before the diagnosis they were quite unwilling to believe there was an issue and for over a test kept telling me she was 'where she should be' despite my concerns about the fact that she is really struggling with her writing. Then two week before end of term when I got her report it confirmed what I ha been saying and that she was way below the level she should be at. When I went into the school following the report the senco had not even seen the report.

Part of me wants to get a bit shitty with the school but I will need them
On side so don't really know how to handle it.

That was supposed to be over a year. Bloody autocorrect.

A little bit shitty might be the way to go if they are so slack.

Sorry you are having such a hard time queencat. It is stressful but if you can get and keep the school onside then hopefully you won't feel as if it is all down to you and obviously your daughter will benefit.

Put in a parental application for a statement - the IPSEA website has model letters you can use. This will force the school to really LOOK at your child's issues in a timely manner as the deadlines for EP assessment etc are set in law. Stops them playing the fob off game till kingdom come, even if your application is not successful.

Ring the NAS and book yourself on the next Earlybird Plus course in your area. It's really useful at the start of the journey you are on. While you are on the phone to the NAS ask if they have any parental support groups and sibling schemes in your area. If they do - sign your family up to both. (I've found that other parents have given far more support to us over the years than any official agency.)

Ignore the ex - if he's so stupid as to willfully ignore medical advice then he's probably in denial and may stay there till kingdom come. Your focus needs to be your child, not salving his precious ego. I'm presuming you are the main carer - in which case concentrate on yourself and your child for now and let him take responsibility for his own actions - at least until you are feeling well again. You'd be better off seeing the doc and getting more help for your depression than making yourself ill arguing the toss with a tosser at this point.

The OT helps with physical stuff like writing, a sensory diet for the classroom etc. eg we have excercises set to help with Ds's balance - just a couple of months ago he couldn't do up buttons, use a knife & fork, write his name - now he can so it's all good. Sensory issues also contribute in a MAJOR way towards behavior - so once you understand these you can manage them better - results in a much happier, calmer child as you'll see.

I have just emailed the earlybird adviser. I've also booked onto a number of courses for behaviours management as well.

Thanks for your help, will have to see what happens at the school, the headmaster told me he doesn't really take a private diagnosis seriously and I have to 'watch myself' with those places when I told him my an.

Surely you can't pay for a diagnosis?!

You can't pay for a diagnosis. Professionals working in the private sector have to watch their reps even more closely than in the NHS + for neurodevelopmental stuff the individuals usually straddle both sectors. The HT may not take a private diagnosis seriously - but the LAW does! (just a lil summat you might wanna point out to him next time your paths cross ).

BTW you apply for a statement direct to the education authority - nought to do with the school at this stage. The school will then be asked what measures they have put in place to help your child as part of the assessment process. That's partly why I advise parents to go for it - saves a lot of daft tail chasing and being fobbed off. You can't reason with the unreasonable. I'd have saved myself a LOT of grief and time if I'd made my own application sooner.

If it makes you feel more confident you can take the private diagnosis to the GP and ask to be put on the list for an NHS assessment (might even be done by the same person lol!). I wouldn't not get on with everything else though while you wait. Some areas won't waste their resources on an NHS assessment once you have a private one though, and just move onto the next stage.

Thank you! One of the other mum's at the school has told me the head teacher will not support a statement. The school they go to currently appears to be all 'for' the bright children but not for kids who might need assistance. Can I demand they help!? By law do they have too?

Thanks again