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.

Yes, being happy is so important.
That is why we never bothered with offered referral for DS borderline 2yo check, as he was happy then.

Ditto first two years of school. I had increasing poor reactions from DS going to school but only asked for help when I was dragging a weeping child who was screaming 'I want to die' into school every morning.

But if he had remained happy I would never of asked/looked for any dx...he is an awesome child...still is...but the underlying unhappiness is terrible to witness.

It was the unhappiness that triggered us to look for a diagnosis for Dd3, only for her it started as soon as full time school started.

I actually knew she was quirky long before then but it had been fine. Its when they are expected to fit in and conform with the "norms" that it all seems to go horribly wrong.

Also teachers measure their success with quirky children by how "normal" they have made them, not by how happy the child is!!

Good luck babies

Thanks

I tell my children to be the best person they can be. To do the right thing, to think for themselves and don't be a sheeple (I. E. following their idiots peers)

But you are right, school just want to squeeze square pegs into round holes.

Just reread my last post and it reads wrong. I meant, that I ask my kids not to follow those peers which are suggesting idiotic things...not that all their peers are idiots....most are very lovely children, who are patient with DS.

You are not a poor parent, far from it. None of this is due to poor parenting; he is being failed here because his additional needs at school are simply not being met by them. I would put a crisp £5 note on it that your son is on the ASD spectrum and it just has not been recognised properly by these people you have seen to date; they have not joined up all the dots.

I repeat you and your family are being failed and that community paed that you've seen is frankly crapola. Ideally you should be seeing a developmental paediatrician rather than one of those community bods.
You need to see totally different peads now, not this shower you have seen to date.

Re point 8 I would urge you to keep going re the support group; becoming further isolated will not help any of you. His school are failing him even though his education rightly comes first.

Have they expressed any thoughts to you about possibly excluding him, I do not wish to unduly worry you further but that may be something to consider.

I would also think about a possible school move as this school are failing your DS; just because they cannot see anything wrong (due to their own ignorance and failings) does not mean to say that there is nothing wrong.

I would also consider applying now and personally for an EHCP for your son as that may also rattle school as well. Some schools do not actually notice the children who have additional needs unless they are doing something like throwing chairs. Your son is being ignored by his school and they are clearly not able and are infact unable to be meeting his additional needs.

I would also suggest you contact IPSEA re his school and seek thier advice. Their website www.ipsea.org.uk is very informative.

You are his best and only advocate here; you are truly best placed to fight his corner for him. This is also because no-one else will do so.

Hi Babieseverywhere,

Re your comment:-
"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".

The above is absolutely bloody appalling, I have read of many examples over the years where children with additional needs (that have gone either unmet or unrecognised) have been failed in a similar manner and who have put too much emphasis on what the school say or don't say. This school of his do not want to help your son (even if he had an EHCP they would probably deny that as well) and deny any needs that he has. The above litany of excuses from so called professionals is actually one of the worst cases of a child being failed that I have read about.

I would throw the book at the school, outreach and MD panel (particularly them re their pronouncement re school) and beg and borrow to see a developmental paed privately.

I have to consider the possibilty that school are right and he might just be badly behaved. It is what everyone currently thinks

We went out to a wedding this evening and DS was running around, shouting and when told off hid under the nearby table. So we had to take the kids out of the venue to run off some steam and again DS struggled outside getting upset etc. DH felt DS was doing things on purpose, I tend to assume he is trying his best. Ended up putting him on a table with a game on a screen, sigh. Is this normal 6yo behaviour or not...how will I ever know for sure ?

We applied for a statement to assess last summer and they finally decined to assess in December, I currently don't see any advantage in applying again...when we have less proof than we did a few months ago iyswim. School will only act on needs and they see no needs.

TBH two years in and I just feel battered and tired of banging against a brick wall.

I just want to make things as easy for our family as possible and see what happens as DS grows up. and if the gap between him and his peers narrows or widens.

"I have to consider the possibilty that school are right and he might just be badly behaved. It is what everyone currently thinks"

Make them hear your voice and keep demanding to be heard.

As Gandhi once said
"First they ignore you, then they laugh at you, then they fight you, then you win".

What if you are indeed right and your child is on the ASD spectrum?. I have seen many examples of people being vindicated after the likes of school have simply blamed their childrens "poor behaviour" on so called poor parenting before its actually been properly determined by others that they do have additional needs. Some schools can be pretty much ignorant or in denial themselves about the child whose needs go unnoticed or ignored. Your family unit is suffering because his needs at school are going unmet.

You have parented all your children the same so this cannot be due to poor parenting. How could it?.

I would also consider filming his behaviour at home and keeping a detailed diary if you do not already do so. Show them evidence of life at home and his social interaction between he and his siblings.

I would also consider filming his behaviour at home and keeping a detailed diary if you do not already do so. Show them evidence of life at home and his social interaction between he and his siblings.

I was just about to type this, so glad I read through the thread first! Filming is a great way to collect evidence if your ds only does things at home with you.

Attila - Fab quote. I'm appropriating that one.

Babies - I don't think I have come across a single parent with kids on the spectrum who haven't doubted themselves at some point. It shows you are self-aware; it is a good trait but at the moment, it is being used against you. You are facing a system that works on denial - of dx, need, provision. It is a case of one obstacle after another. "They" are masters of stonewalling. Refusal to assess just says it all - if they were listening, they would be assessing.

Your summary further back is awesome - it clearly describes a child with sensory issues, emotional and social difficulties, obsessive traits - in other words, a child on the spectrum. The fact he holds it together at school is amazing and quite common. DS2 flips that and is OK at home but his world implodes at school.

Keep going. Keep posting. Take a breather if you need then, come back fighting. Your kids have you in their corner and that will make all the difference.

Babies Your experience here is sadly not unusual. So many professionals really don't have the expertise we expect from them, and that they SHOULD have, to diagnose ASD, and they give far too much validity to school's opinions about a child, when most school staff have nowhere near enough autism awareness to be able to interpret what they see when he's in their care.

From your descriptions it sounds like your son has autism screaming from every pore, but the 'right' people have to acknowledge that before a diagnosis can be made. Keep pushing and keep fighting, and make records of everything. And go to that support group if you can - you will find it very useful. And stay here, too .

Ds's story was very similar - glaringly obvious ASD and ADHD symptoms, appallingly misunderstood by school and other professionals, and no support in place because he didn't 'qualify' for it without the dx. He was nearly 8 by the time it was made official, and we'd had concerns since he was 2 - he'd suffered enormously in that time, struggling to get by on his own. But I should add, even with the dx he still didn't get any meaningful support in school, so it's worth bearing that in mind, too. You may be lucky and get support in place when it happens, but it's not something you can guarantee, not by a long chalk.

1. All experts only see small things that they feel is explained by behavioural traits and poor parenting.

1. Yes, DS behaviour is very different at home with us which adds to the experts belief in point 1.

1. Senco made it clear that parenting boys is different than girls. Which is why she feels I only struggle with my boy. Maybe she is right and he will mature in his own time. He is my only boy.

1. Lastly no proof I collect will be taken into account. This sounds paranoid but listen to this example.

a. I say DS rocks and spins frequently (i.e. repetitive movements)

b. School says he doesn't at school. -Despite spinning across the playground most home times and negative behaviour points which are linked to fidgeting

c. Comm Paed agrees he doesn't in clinic.

d. I explained to Comm Paed that I knew for a fact he does this at school and can show her a video that the school filmed and placed on their own website, which clearly shows him rocking in class.

E. Comm Paed said school would have no reason to lie

So I could filmed evidence but if it is filmed at home, it is evidence of poor parenting and anything school films is evidence of a normal naughty boy.

He is too subtle and there are worse children in his class. Maybe if he behaves the same way at 11 yo, it might be worth revisiting the idea of a dx but if all else stay equal and I can get him into school everyday, I will wait.

The only thing I am clinging to is the temporary access to the school carpark, which makes the morning school run bearable. But if it is taken away, I will just have to grit my teeth and get him in late.

I wish parents opinions were believed :(

Comm Paed said school would have no reason to lie

Or perhaps they do. The two schools ds went to certainly had good reason - they were failing to support him and if they'd admitted to that as an explanation for his continuing difficulties they'd have been in big trouble. So they lied, both of them, and a lot. To the point where they prevented ds getting an adhd dx and the medication he needed to make life easier, not just for him but for the school who were struggling to manage him.

And our experience is far from unique. Dozens of parents will tell a similar tale.

Yes, Babies schools DO lie, to cover for their ineptitude, but I have heard many times that other professionals (eg NHS) have great difficulty in getting their heads around that. The default is that the parent must be lying or must have misunderstood/misinterpreted what they are seeing with their child. Teachers are always regarded as honourable and acting with the best of intentions, even when they're not.

And, of course, it's always cheaper to blame the parents than to give some proper, practical, appropriate support .

Show them evidence of life at home and his social interaction between he and his siblings.

Ironically I had to take his younger sibling in with me this last meeting as I couldn't get babysitter for her (also under assessment and very screamy)

The Comm Paed and I were both talking at cross purposes. I was trying to explain that no dx, didn't make DS difficulties go away (Sleeping, school anxiety and social anxiety) and how he struggled more with his peers and less with adults (in clinic) and she was saying that she saw nothing in him.

Comm Paed broke of talking to address DS who was having a minor meltdown as DD3 was taking toy horses off him, which he was lining up and he does not know how to cope with things like this. She told him that he should be a big boy and understand his younger sister didn't know how to share yet....Ironically neither does he, which is why I am concerned

I asked if the school started to see things would it be worth re looking at DS and she stood by the door and said why would they see anything. So I thanked her for looking at DS and that I was sorry it turned out to be a waste of time and left.

TBH I am hoping DD3 will get discharge next week and we can have no more meetings.

Remind me Babies, how old are your children?

8, 6, 4 and 2 all birthdays in summer.

DS is the 6 yo and DD3 is the 2 yo.

Unfortunately babies your situation is not entirely unusual but its certainly one of the worst examples of a family unit being failed that I have ever come across.

You certainly now need to see someone other than this comm paed who seems both entirely inexperienced and overworked. Small wonder you are at cross purposes. This person's assertion re school would have no need to lie is naïve at the very least and at worst plain wrong.

Infact I have myself come across examples of children being failed by their schools due to their own ineptitude and denials that the child in front of them has additional needs. They were failed and repeatedly so because their needs at school were not being met. In all these cases the parents were not listened to and were dismissed as poor parents.

A developmental paediatrician is one of the types of people you need to be seeing and I would no longer see this particular comm paed. This person is never going to assist you and your family. Just because they cannot see it does not mean it is not there. You are as a family being systemically failed here.

I would also now consider approaching your MP and making an appointment to see this person at one of their surgeries. Whether you voted for him/her or not, you are one of his/her constituents and their involvement may well be helpful.

Re school I would also talk to IPSEA www.ipsea.org.uk and seek their advice as well. They now have a callback service so you can book a call.

The Comm Paed is highly thought of...especially in ASD...she may be a little naive to assume that schools never miss things but I believe she is confident in her conclusion. I.e. Repeat parenting course might help. She is also referring to CAMMS re anxiety and sleep but has said they won't take refferal.

DH says it is ridiculous for me to repeat the parenting course and reminded me that while I did the course online, the behaviourist who runs the same course local visited our house at school's request....months ago.

Behavourist admitted the school did not believe us and said it was clear I was a good parent and who was following Triple P parenting (but it doesn't work for DS) and could give no further suggestions about getting DS to school. This lady suggested driving to school...and this currently helps.

There are no developmental paediatricians in this area, according to the GP. As I did ask for a referral that way two years ago. GP said everyone sees Community Paediatricians.

I did speak to IPSEA last year and applied for statement to assess on their recommendation and Starlights on here. IPSEA also suggested talking to MP but I didn't do that.

Just feel I have hit the end of the road...unless someone changes their minds iyswim.

I can only do my best. I think I will redo parenting course and take all my issues to the course and reask for more ideas.

If I could get DS sleeping and less anxious, he would probably not hate school as much.

Also will try a few more after school clubs, to build up social interaction, if I can get him there. He is getting to big to lift and dress whilst melting down and he is mainly naked or in pjs from the moment we get home from school....he hates clothes.

Thank you for all posts...it is making me think.

I second approaching your MP and asking for their intervention. They can be very helpful. Mine helped me get access to an Ed Psych for assessment for exam access arrangements, and that led to statutory assessment for a statement. Before that we'd been told we weren't allowed access to any LA personnel because we home educate . Sometimes you need to have someone else to act on your behalf.

With that in mind, look into advocacy services too.

"I did speak to IPSEA last year and applied for statement to assess on their recommendation and Starlights on here. IPSEA also suggested talking to MP but I didn't do that".

Please now consider talking to your MP; he/she represents you as one of their constituents.

"If I could get DS sleeping and less anxious, he would probably not hate school as much".

I do not think that this would make any difference; his anxiety is being fuelled further by his possibly being on the ASD spectrum. He hates school I would think because his needs there are not being recognised and this school thus is totally wrong for him to attend. They are failing him here and badly so. I have seen this happen before and your situation is indeed one of the worst I have come across.

I sincerely hope he does not have to actually arrive at secondary school before anyone other than yourself actually acts for him properly in terms of getting his additional needs met.

Would not bother repeating the parenting course at all; that just takes up more of your own resources and none of this is due to poor parenting.

You have not reached the end of the road yet, not by a long shot. You are your child's best - and only - advocate here.

Comm pead that you write of is to my mind hopeless and way out of her depth. I would try and find out whether there are developmental paeds in your area; I would think that they are around even if you have to see such a person privately. Ask another GP and contact another GP practice if the current one is unhelpful.

I feel this village school is the only option for DS. The children are reasonably accepting of his quirks...even though he is unoffically labeled the weird/naughty kid.

DS is also a very appealing child, hugs everyone (like it or not) and when he gets upset, the staff comfort him.

DS can't cope with a new coat at the moment, a new school and all the changes it would bring would break him.

We are lucky in that it is a good school with good staff and I have no concerns about any teachers (even though DS class teacher complained that I had upset her) Both older girls are there and both happy and learning.

I honestly do believe that we will have to wait for high school for a chance at a dx. I was hoping for a dx and a supported transition but that won't be happening now.

But an offical dx doesn't come with any real help, in the meantime I will have to find out what helps DS and do what I can at home.