To relent and just accept that I'm a crap mum

[ByeGermsByeWorries]

I'm at my wits end after an occupational therapy visit for my DS. My son has been having appointments, reports, investigations etc since age two and I've gotten nowhere, I'm a useless mother because this seems to be what they are all pointing at. I'm frustrated about the help I'm being given and it all seems to suggest I'm to blame.

• He's 6, he's unable to follow simple and multiple instructions such as "kneel down" " put your hand on your head and the other one on your tummy", he can't understand rules for simple games like hide and seek/Simon says etc. he can't understand questions when I ask why he has done something his answer is always "I don't know" or crying.

OCCUPATIONAL THERAPY SAY I NEED TO PLAY SIMON SAYS MORE.
APPARENTLY BECAUSE HE CAN PUT A BALL UNDER A CUP AND RECITE / REPEAT A COPIED SENTENCE THERE ARE NO CONCERNS

• He cries whenever he is unable to do something or throws things and screams. If he gets too worked up he digs his nails into his face.

SCHOOL HAVENT SEEN IT SO HAVE DOCUMENTED THIS AS UNTRUE

• he breaks toys and electronics ect on purpose by pulling off the parts, stickers, buttons, or pushing the buttons all the way in, chews things, jams them into other things, plugs, dangerous things, picks wallpaper off, digs paint off his wall with bits of toys, pulls curtains down, shreds books, cards, jigsaws etc, climbs on dangerous things like shelves, windowsills and throws himself from a height.

PAEDIATRICIAN, OT, ED PSYCH ETC IGNORED AS APPARENTLY THIS IS WHAT ALL CHILDREN DO.

-He smears faeces and urine in toys and on walls, in his hair, on his body, in receptacles. Makes "soup" by dipping shredded paper into this disgusting concoction. Nobody believed me so I took pictures.

THE PAEDIATRICIAN ACCUSED ME OF CAUSING IT BY TAKING ONE PICTURE, ONCE.
SCHOOL SAY ITS NOT REALLY HAPPENING AS THEY HAVEN'T SEEN IT
OCCUPATIONAL THERAPIST SAID MY FAULT I DONT DO ENOUGH MESSY PLAY AND I NEED TO ATTEND A PARENTING COURSE. I have tried EVERYTHING to stop it, giving him paint, play doh, shaving foam, flour and water,mud,marmite, you name it.

• He eats hardly anything except dry toast. Dry crackers, cereal, breadsticks, crisps, sweets, yoyos and jelly, any type of real food and he will sniff it, look at it,cry, gag.

DIETICIAN SAYS ITS MY FAULT I NEED TO KEEP FORCING THE SAME FOOD IN FRONT OF HIM UNTIL HE EATS IT AND ALL CHILDREN ARE FUSSY

A bad sleeper, he won't sleep in his bed only on the floor between the door and the landing but he isn't afraid of the dark, he falls asleep only through exhaustion and that's around midnight he's up again multiple times and fully up and about from about 6am.

AGAIN MY FAULT AS A FEW, LITERALLY A HANDFUL OF TIMES WHEN IVE BEEN DESPERATE AND HE WONT SLEEP IVE ALLOWED HIM TO WATCH TV

• he repeats sequences constantly, numbers, days of the week, asks every day what day it is and will keep asking until he gets an answer, if we say we are going somewhere or doing something, he goes on and on and on asking about when we are doing it and reminding that we haven't done it, if we are no longer doing it/going he cries and tantrums. He is still asking if it's christmas and talking about Santa coming soon......

• cries and tantrums at everything, cries at being told no, cries at not getting things to fit together, cries when he can't find something, cries when something takes too long. If I say I'll get him a drink and I get distracted by a few minutes, he sits and cries.

• he has an obsession with glasses, he will make them out of paper,straws, pencils, string and want to wear them outside even if it's raining, cries if he can't.

• he makes sounds, often the same sound, in a loop for ages, oooooooooo, woo woo woo woo woo, aaaaaaaaaaaaaaaaaaaaa etc he often loses track of time doing this and can go for hours.

• no attention span. He gets bored of activities within 5 minutes and will want to move on, he can only listen for a few seconds before moving or shouting out.

TEACHER SAYS ITS MY FAULT THAT HIS READING IS POOR AS I DONT READ TO HIM ENOUGH!

• drags his feet everywhere and trips over everything, walks on his toes

DOESNT HAPPEN AT SCHOOL SO DOESNT EXIST.

-still holds pencils with a fist and breaks the tips despite being taught how repeatedly since around 2

I can't take any more, I just want some acknowledgement that something isn't right instead of everything being blamed on me. The school block the other services by telling them everything's fine mummy is being silly,the professionals say there are no concerns at school and therefore it's only at home, so it's down to my parenting. Blaming it on his father having him on weekends instead of us being together. For what it's worth his father has not lived with us since he was 6months as we agreed to divorce. We are still great friends.

My son can be a lovely cheerful happy little boy but everybody makes me out to be a liar as this is all they see, they don't see me crying in my bed at night because I can hear him oooooooooooing and flicking the light on and off, washing shit off the walls and my son at 3am, feeling ashamed at the contents of his lunchbox because I'd rather he eat something than nothing.

They keep telling me that because he's the correct weight he's fine
Because he can repeat a sentence or action, he's fine
Because he doesn't do it at school it's not true, he's fine,
Because he smiles and speaks he's fine
Because he can do do the massive zip in the OT office he's fine dressing himself
Because he can put a ball under a cup his understanding is fine
Because he can keep a pencil there for the time his hand is physically put into that position he's fine
Because he can count to 20 he's fine (copied sequence)
Because he can pick his name out he's fine ( copied routine)

I don't know what I am after I just wanted to rant.

This sounds so tough for you, made worse by the lack of support from professionals. Your op cries out Asd and dyspraxia to me, which often both go together. I would definitely look for a second opinion and I would even print off the signs and symptoms of both conditions and ask the teacher to look out for what is on the list. In my experience some teachers are better than others at identifying issues.

No advice but as I know what it feels like to have a school so oppositional to getting a child the help they need.

Oh you poor thing

From what you've written, it seems so clear that your DS is not neurotypical, and it's so incredibly unfair that nobody is taking you seriously.

My DM is an SEN teacher and my DH's sis has multiple additional needs. From what my DM and DMIL have said, parents have to fight so horribly hard to get the help they need. Help is out there, though. Grit your teeth and refuse to be fobbed off; you know that your DS needs additional support and anybody who thinks otherwise clearly doesn't have the full picture.

Agreed with PPs in respect of keeping diaries/records of behaviours and incidents, too: if you're able to present a really comprehensive wodge of evidence it can only help your 'case'.

Everything to me points to autism or maybe Fragile X as well ( don't take my advice , very much based on what you have said already. ) I have 2 kids with ASD when we weren't getting anywhere with school and unhelpful GP we got an initial private assessment which cost about £100 (10 years ago) then changed GP and doors suddenly opened : kids were referred to consultant and ed psych sat up and took notice and school were suddenly a bit more helpful. The initial assessment was not the full testing but a flag for further investigations done by consultant. Might be worth investigating that avenue.

Lots of you are not a crap mum, you clearly care very much about your son.

I'm so sorry, you have been treated really shabbily. Why the fuck would someone make it up that their child is struggling?

Speak to parent partnership and ask for them to attend a meeting with the senco.
Call Eric- children's charity for continence issues.
National autism society- get a reoresentive to speak to fuckwit senco and insist on assessments.
Go back to GP and tell them you are at breaking point, give them a list and TELL them that you are there on the advise of the national autistic society. Insist on a referral to consultant and to Camhs.
Yes to contacting local charities and asking for support.

A letter to the school governors complaining that your serious concerns about your child are being met with indifference and obstruction. Use the term 'safeguarding' ( should get things moving and will be very satisfying to write)

We ignored the report from the LA occupational therapist ( perfectly nice woman ) because apparently there's nothing wrong. We were able to pay for a private assessment which has stood us in good stead and has been the beginnings of getting diagnosis.

I'm so sorry you are being let down. Of course your son needs some help and support, sounds like you are both struggling (hugs)

Also I hope I didn't sound stroppy, I'm furious on your behalf! Please don't feel alone, lots of us have been through the dance of trying to get support.

Sounds like classic ASD to me.
I've met parents via work who had similar troubles and went for a private diagnosis. No idea what they had to do for that but when nobody was listening there was no other option.

Try calling your local SENDIAS or carers charity for advice.

No you aren't a crap mum. You have done your absolute best for him. You must be exhausted having to cope and getting no help from a specialist which your son clearly needs.

There are certainly a lot of asd traits there. Are the professionals actually saying that it is your fault or just suggesting things that could help some of his issues? Because even if your child does have asd there are still things you can do that will hep and things that you can do that will make things worse. If factual things are being said that are incorrect like you don't read to him/do messy play enough then correct them!
My ds was diagnosed when he was 3 and I have to say that a diagnosis really hasn't brought any understanding or help from school or anywhere. The good thing is there are a lot of things you can do to help your son with the difficulties he has - whatever the reason.
I think communication is the first thing to work on as once his understanding is better it is easier to tackle other issues. I found the asha, talking point and teach me to talk websites great for activities and modifications you can make in how you communicate to help your child. You can also find lots of activities online to help with attention skills - Simon says, freeze, traffic lights etc. And read as much as you can - use his interest in glasses. Read books with characters with glasses and talk with him, draw glasses, get catalogues with glasses from the opticians and practice cutting out glasses. Basically if you want him to learn a skill he will be a lot more motivated if it's related to his interest. It could also be used as a reward once he's able to understand the concept.
As for the smearing we found that zip up bodysuits put on backwards prevented that problem at night.
If he is destroying things and endangering himself then you need to control what he has access to unsupervised. Childproof what you can and keep delicate things out of the way until he's older.
The food issue I would stick with how you are doing things. I wouldn't introduce anything that would upset him. The best way to introduce new foods I have found is through play. You can do games like making pictures with sliced carrot for eg to get him used to the feel and having it in front of him. Then maybe progress to how long can you hold it in you mouth and make it in to a competition. The important thing is to let him feel in control. The minute he feels forced or under pressure it will set him back.
These are just some things that I have found useful so I hope they help. You are entitled to a second opinion re diagnosis but really the school should be supporting the difficulties he has regardless. It may be that he does display less traits at school as some children find the predictability of the day reassuring.
Things will get easier as he gets older.

Perhap start looking at schools that have sen unit in the primary. They are more likely to show awareness of issues. Some schools are not set up for sen.

I haven't had time to Read the whole thread.

Please consider contacting the Save the Children charity. They fund family support workers who come alongside parents that are not being heard.

These family support workers cover all bases. They are not biased and are funded independently of Heath, Education or Social Services They will support you at case meetings and with the school.

They can be a God send.

I wish you well, you are really going through the mill and it sounds as though you need support.

I remember asking the gp for ds to be referred to a pediatrician, as the health visitors had suggested. The gp was horrible, dismissed everything I said and refused to refer us for any help. As I was getting up to leave, he called after me: "Did you drink and smoke during your pregnancy?" I just replied No, walked out with my ds and cried in my car. I should have complained, and I'll never forget it.

Yes these are actually the things they are telling me, they just try to sugar coat it, in a "silly mummy" kind of way for instance when I went to the OT's office where I'd filled in a form beforehand which asked me if he struggled with fastenings such as zips, I ticked the nearly always box, he usually ends up crying trying to get the zip together at the bottom or ends up sort of cross threading it when it gets stuck pulling it up, getting it off again if the zip gets stuck going down he pulls the clothing apart and breaks the zip. I chose nearly always, because he can do poppers. He came home from school with his jumper and shirt inside out yesterday. He struggles to work out how to "right" clothes that are inside out, even with help.

She put him into a special jacket with an absolutely enormous zip on it, did the zip nearly all the way to the top, then asked him to pull it the final 2cm or so, so basically did the zip up for him as I do, and said to me, " see, he had no problem doing that up there so I think we can change that answer. I felt like she thought I was exaggerating despite sitting around at night more than once seeing buttons or zips back onto his clothes!

I've managed to find SENDIASS so I'm hoping I'll be able to write my concerns nicely and send it that way, I don't want to phone I'll just end up hysterical and forget things

Then you need to point out that it was a large zip and was mostly done for him and that he struggles with zips on regular clothes. Maybe even get him to have a go at some zips/buttons on his own stuff to demonstrate. And don't change what you've ticked on the form. Schools will tend to downplay issues at school imo. Firstly because teachers can be reluctant to admit that they need any help in managing a child and secondly because the school don't want to pay for support. You need to be assertive. If the school are saying he's fine point to specific examples. Clothes on inside out, no firm friendships/invitations to parties etc. They can't deny facts.

Couldn't help feeling teary reading your OP... This sounds soul destroying, you are doing so amazingly well not to have caved under all the criticism and stress. Have no practical advice, but just wanted to say I take my hat off to you. You are doing your absolute best to get answers for your son despite all the hurdles, and criticism being thrown at you. You're clearly a wonderful caring mum. Will be thinking of you and hoping someone with practical advice can help you in some way! Hugs xxx

This sounds a lot like my DSS1 who is 7. He does many of these things, maybe not to the same level but so much of what you said rang true.

He too cannot follow simple instructions, he gets incredibly frustrated when something doesn't go his way, and he never gives anything a second chance, for example he made one mistake whilst playing a computer game and threw the controller at the wall as hard as he could, paying to regard to either controller or wall.

He makes many strange screeching noises, when he is angry, but also when happy/tired/excited, he also makes this horrible noise that I cannot compare to anything, goes right through you.

He is never asleep before 10pm, and is up with the lark.

Oh, so many things are the same..

My DSS has Aspergers Syndrome and autistic traits. Please go back to the Dr and push for more tests and diagnosis. Everything you said screams autism to me.

The advice and support I've had so far has been brilliant thank you all.

I find it difficult to speak up against the professionals because then I'm afraid they will refuse to see us at all or put me down as strange or concerning. When I try to speak up they either just railroad me into feeling ridiculous or brush it off.

The school he attends was my choice out of two, when I went to look around, the head assured e repeatedly that his needs would be met. Since he joined the only reports the teachers give is "minigerms is a bright happy chatty boy who is getting on great in class and likes maths" I doubt he finds time for his poo smearing etc during school time, it's usually at night.

Regards to the unthread suggestion of the backwards sleep suit, I did try it previously, but he struggles and arched his back to break the zip, pulled at the sleeves etc and manages to get out of them

It does depend on the suit. Some of them you can pull and force the zip. And popper ones just open easily. I ended up getting some with feet and cutting the feet off if I remember because it had a good strong zip. It will get better when his understanding improves. You can use things like rewards in the morning but while he doesn't understand it's harder.
It can be difficult to speak up with the professionals - especially if you are in meetings on your own. Is there a relative or friend who could attend meetings with you for support or you could try and get someone from parent partnership or similar organisation (I think a pp upthread has suggested another organisation). So long as you aren't being argumentative and state your case with facts to back up rather than opinion then you should be able to assert yourself without fearing you will be written off as strange or anything. I always make sure I'm extra polite, friendly and complimentary so will tell them any strategies they've suggested that have helped and they've always been fairly receptive to what I have to say. Don't let anyone make you feel as though you are going mad - they only get a tiny snapshot whereas you know your son best.

I cannot say this enough.... Get a different paed. You have every right to do so.

I just wanted to hug you. You must be absolutely exhausted.
I hope at the very least this thread allows you to be heard.
Not everything can be laid at your door love.
Playing Simon says
Messy play
Limiting TV
Reading to them
These four things I should also do with mine a lot more....but it strikes me that it's like putting a plaster on a gaping wound. Those four things are not going to be a magic cure-all for the extremes of behaviour described.
I feel for you, I really do. Keep posting xx

Buy a diary with a page a day and start detailing everything. Everything he does, everything professionals say. As soon as you have an appointment write down who said what. You've both been let down terribly, unfortunately it's common. I'm incensed on your behalf.

I really hope you get some help op