Officially a poor parent....where next ?

[Babieseverywhere]

More an exercise in organising thoughts don't expect responses

1. No dx for DS, yet all his quirks and difficulties remain. I think this is the most misunderstood bit....failure to find an official label does not result in a well behaved child but in a child who has unofficial labels. DS is now labelled impulsive, ignoring instructions, unsocial, badly parented and many other terms. I have to endure the same meltdowns but feel I am to blame for them all somehow. Glad that the appointments are over (for DS) I really hated them and wouldn't sleep on the run up to them.

1. Do I redo the parenting course in real life that I have already done online. Just because it might magically help ? Where do I find help from otherwise. What help is there when poor parenting only affects one (maybe two if we include toddler DD3) child out of four in the same family. Maybe find an alternative course as the Triple P course, taught me nothing new.

1. I need to reduce the anxiety. We all need more sleep. DS needs to move into his own bedroom at some point. We want him to be able to stay on a floor on his own OR go upstairs to toilet without one of us going with him. Would prefer for him to stop talking about death and dying but I remember DD1 having such a phrase and this might be avoidable.

1. School. DS has a lot of issues surrounding school. Especially getting into school in the morning. The last 18 months have been hell in this respect. But I have learnt to handle DS better but it can still take 40 minutes to walk the 10 minute walk in the morning. DS still kicks out, hits, cries, shouts and refuses to walk. This makes our mornings stressfull for everyone. The temporary favour of being able to drive into the school carpark really helped. I am unsure whether this will be extended beyond the Easter deadline. But this is the single most stress relieving thing we have atm. Fingers crossed it is something we continue to do, I cannot explain how massively helpful this is to our morning routine.

However DS continue to be told off and punished for his behaviour in school, on a nearly daily basis. Shouting out, not listening, not following instructions are the main complaints.

1. Friends. DS really struggles with other children. He stands too close and shouts a one sided monologue at them usually about Minecraft or Skylanders. DS wants and feels he has 30 best friends in his class but that is not true. He rarely gets any playdates or party invites. Could I stand doing more play dates when DS will only play the computer at them and not do anything else. He doesn't even play with a family friend child who he has known all his life. Just sits in the corner and plays lego/PC.

If SALT continue their social classes..which we are on a waiting list for. These would be very helpful to DS. If these are cancelled would more after school groups (which he hates) help ? Or can I read enough self help books to help him at home. Or just accept he will be an lonely child.

1. Younger Sister DD3 is also going though assessments too, as HV were concerned. My current thoughts are to discharge her now for two reasons.

One she is a total mini DS, why endure loads of pointless appointments to the same ending. Two surely her quirks are mainly due to the same poor parenting I am doing to both children. (Excluding DD1 and DD2 who I am parenting wonderfully well and who are happy and bright at school, I am only poorly parenting 2nd and 4th children in our family) I am sure DD3 will catch up verbally and get toilet trained in time for September and if not will keep her home a few months longer till she is ready OR maybe just send her in for mornings. For sure she us too young too label.

1. Me. Just feel heart broken that the things I see, are not believed unless it is also witnessed in a clinical situation or school see it.

School sees nothing mainly as they have 300 kids to watch and the behaviour they do see is labelled naughty. DS deals best with adult women on a 121 basis and worse with groups of his peers. So only small traits are noted in clinical settings but enough for every clinician to note some areas of concern.

I am broken hearted as I still have to take DS to doctors, dentists, supermarkets with his siblings and everywhere we go people will see his behaviour and tut/comment or ask me directly what is wrong with him and my answer will have to be 'There is nothing wrong with him. It is all my fault, I am a poor parent'

1. I will be withdrawing from the local support group I was attending weekly and withdrawing DS from the two groups he was going to (one is in school time and his education must come first and it is very difficult to get him dressed and out in the evening for the other group. He meltdown screaming and crying on the floor and he is too big to pick up and dress nowadays.

The lady who runs it will tell me yo attend and that I am bring daft but I can't take resources I am not entitled too....I need to find my own solutions and not rely on others.

Sigh...I just want all our family, including DS to be happy.

Just so I am clear - are you saying DS was turned down for a diagnosis of ASD?

Deep breathe - he won't be the first nor the last. What do you think? Might be time for a private assessment? Private consultants do not have an underlying agenda - they are simply answering the referral. There are some authorities out there that won't diagnose - and shame on them.

DS2 was diagnosed - undiagnosed - rediagnosed as autistic - not - atypically autistic: over the last 6 years. It is nothing if not a roller-coaster at times.

This is the part where I throw ideas at you - ignore all the ones you do, have tried, hate:
visual timetable - the misbehaviour is usually symptomatic of underlying anxiety and trying to control the world to make it more manageable
autism groups - our local one runs lego and xbox sessions
there are prompts for teaching spacing and volume control - will go away and look them up, if you are interested
speak to your local autism people - having people who get it is such a relief
try CBT - works a treat
ask for an OT referral - there may well be underlying sensory issues kicking off the rejection of school

Don't give up - on yourself, on life, on DS. Build in treats, breaks; be kind to yourself - you are doing your best.

However DS continue to be told off and punished for his behaviour in school, on a nearly daily basis. Shouting out, not listening, not following instructions are the main complaints.

Is he telling you about this, or are school?

If it's school, since they've told the assessing paed that he has no problems, remind them about this every time you have them complaining about his behaviour. He's (for example) impatient and not waiting his turn, say? What strategies do they plan to use to help him not to do this? He refuses to line up? Have they tried to find out from him what his problem is? Have they done anything to alleviate his problem with lining up? What do they mean they've tried xyz and it doesn't help? Is it not a tried and tested method with NT children....

And paper trail.... Every single conversation you have with school about how he's not matching up to expected standards of behaviour needs to be relayed back either via email or letter. Be that parent. It won't change the lack of diagnosis (for now) but it will be an important paper trail if things come to a head at school, over the next few years.

Not badly parented at all.

Sounds like you're in the same boat that we're in, no dx?
If that's the case have you had any recommendations to help?

I don't really know what to say, but I know exactly how you feel. This was us a month ago, no diagnosis but still facing the same problems day in day out.

I really feel for you it sounds like hell what you are going through.
Are you able to look into a private assessment at all? I know it's a lot of money and i'm sure you have already considered it. I'm sorry i've got nothing useful to say to you.

Dear B - you so clearly are NOT a bad parent! You are right - if you had been a bad parent you would have affected all your kids.

What lots of parents are told is that they MUST be bad parents because their kids behave badly at school. How about SCHOOL must be doing a bad job because dc behaves badly at home. And school.

And if they are labeling as naughty behaviour that dc cannot control, then they are definitely poor at their job, at least as far as dc goes.

I think your thought-organising is pulling out stress-reduction as a priority - that sounds spot on from what you say.

Remember the stress is being caused in some part by the majority-mainstream world being ignorant or unreasonable and that is most definitely not your fault.

Hang in there

I've no practical advice but ditto what everyone says. You are not a bad parent. You are articulate, insightful, dedicated to your DCs and very caring.

Shame on the school and other professionals involved. You are not a bad parent - you and your DS are not getting the help you are entitled to. Sorry it's so hard.

If you were a bad parent you wouldnt be on here beating yourself up!!

Dont give up, it took 3.5 yrs for Dd3 to be diagnosed. The first time we went to CAMHS the MH nurse suggested putting into place some strategies that are recommended for children with Asd! She said it couldnt do any harm and if they helped they might make our lives easier, which they did!

We still had another 9 months of hoops to jump through before the diagnosis came but we had put loads of things into place and our life was better.

You are already doing some things that are helping your Ds, carry on and keep a diary too.

Dont give up

Your not at all a bad parent. A bad parent ignores a bad parent shouts at their anxious confused child.

I was told I'd never get a dx. Less than a year later we had one. If it is asd time will give you more evidence.

Don't do yourself down. You are soooo not failing your child!

The school have a 'positive' behaviour app...which they put +1 or -1 points on a daily basis.

DD has collected around 80 points with a weekly average of +6
DS is around 14 points with a weekly scores ranging between +4 and -6...averaging -1

I can look at points per child on my phone. It tells me the category (trying my best/not trying my best/listening well/not listening well etc) and whether it is a positive or negative point.

DS is very stressed on days he gets negative scores. Every other child that I know of has only had the positive points.

School reassure me that plenty of other naughty children get negative points.

School also told us that all children get two warnings before a negative point is given.

So on a bad week -6 points, DS has been spoken to 18 times in a week..at least three times a day...no wonder he hates school.

But that is normal 6 yo behaviour.

I am still very confused as to what we are looking at and if it is a thing.

Maybe it is just personality like last Comm Paed said.

Every NHS person saw subtle but real issues and considering DS behaves best in 121 with adults, I am surprised they saw anything.

School and Outreach teachers saw nothing. Despite daily negative behaviour points and DS upset after leaving school and reluctance to attend in the morning.

The ADOS surprised me. How they marked it was unclear. They said he played with toys well but it appeared he didn't do much at all.
They had a book to test his theory of mind, he got the question wrong first page and the lady corrected him and the other pages he gave the corrected answer. If they gad not corrected him...he would if answered wrong throughout iyswim.

They noted how hyper he was moving around climbing and rocking the chair...I noted that was the calmest I had seen him in ages! They also noted sensory elements, stroking skin and excessive affectionate for assessor. He loves adults females.

OT saw lots and recommended daily OT sessions due to hand writing and core muscles issues. One visit to chat to Senco at school and IT withdrew her earlier report and said no longer any OT issues. DS still holds pen weird and falls off chairs daily.

Multi discplinary panel said Social communication difficulties which need looking into further but as 'school see nothing and they would if anything was there' no dx.

But the more I think about what we see that school and clinics don't see. The meltdowns, spinning, ducking skin and socks, endless monologues about his obsessions , anger, kicking, hitting, stroking our skin, poor understand rules, poor ability to wait/queue, literalness, anxiety so bad that he would rather die than go to school (threats only would never do anything), won't be on his own ever or even on a floor of our house without another person, won't sleep/play in his own room ever.

But that last list is what us parents say/see aka unproven facts.
Where as school lack of observations is proven fact, even when their reports contradict other NHS reports !

Unfortunately the behaviour app only shows last week scores...so all last data gas been lost...but I will start storing it somewhere.

Sigh, just feel a fool. I can see why the think it is me, as he masks so well elsewhere.

Unless he breaks down at school, they will never 'see' anything and even if he did...then I bet it would be given as further proof of his naughtiness and our bad parenting.

Of course I hope he continues to do well at school and keeps on masking...better for his education.

I love hearing about your DS..A happy success story ...is he still doing well at high school ?

I am in two minds about the ASD support group. I am 100% sure I would be allowed to attend and they would continue to be lovely and supportive to us.

But I would now worry as ASD has been ruled out, that the other parents would privately think we should not be there taking up another child's place ..After all we are not pre diagnosis anymore...We are past that.

I had looked at boy clubs for him.
The local village one is run in our school with boys from his class who are nice but not his friends.
The one in the next town sounds promising and supportive but run at the same time as the asd support group. I think I will recontact them and see where we are up to waiting list wise.

The oldest three including DS restart swimming lessons shortly...interested to see if he learns better at this new pool.

We do use visual timetables and various other daily scheduling things and they work ok.

I just wish by not having an dx, we also no longer had any difficulties with DS and his behaviour either.

ouryve The school have tried to stop DS shouting out in class for two years now. It is even in his iep and yet he still does not have the impulse control to not shout out.

Private assessment is not an option and even if it was, I would be worried about wasting the money iyswim.

Just need to work out how best to keep our little family calm and happy.

I will feel better when DD3 gets discharged too. The HV referred her not me and I don't want another two years of pointless meetings with the same result.

Rather skip that, so will be asking Comm Paed to discharge DD3 at next appointment. If Comm Paed feels DD3 speech requires attention I will respect that. I think DD3 will catch up verbally eventually but no more social communication difficulties testing iyswim. Surely of DS has a quirky personality so will his sister.

Plus I am withdrawing permission for school to assess DD3 records in Sept when she starts. I do not intend in making the same mistake twice.

Ironically I don't want help with DD3, she is happy (if a bit screamy) and we are getting much better at handling the asd traits/personalities at home.

The speech is the main concern fir HV but I reckon she will catch up once she gets to nursery.

Toilet training will come in it's own time probably again when she starts nursery (just like her brother)

We will get there at some point :)