Awful Mum Sen Child WWYD please please help

[Bumblingbee101]

Looking for advice for anyone with a child with ASD/PDA/DA/Trauma/Struggling to regulate. I work in education so I know quite a lot about it but every strategy I have isn't working 😕

A bit of background I'm a Mum to 2 lovely LOs. My eldest who is nearly 5 has had a long journey (late to talk/walk/can't really read social cues etc) and recently had a diagnosis of ASD/PDA with trauma (the trauma came about when he was 3 - he didn't see me for 2 months as I was in icu and nearly died after his sibling was born and then spent everyday for the next 6 months either at the hospital or with hospital at home service) he also witnessed me collapse and bleeding out profusely at home. At the time his language was very limited, he is now very bright and has caught up immensely.

Fast forward and he recently received his diagnosis after years of fighting a battle and has been advised to get an ehcp which the school have said they cannot help with until the new year starts...

My lovely little boy has frequent outbursts, meltdowns, screams, is angry, shouts rude words. He overheard a nursery room leader say the 'f' word when he was 3.5 and it has somewhat stuck and comes out when angry as instead of ignoring it they made a big deal out of it and now it's ingrained :(

Tonight (it's my birthday) has been the worst night in a long time. He normally loves birthdays but we didn't celebrate because after being told to not jump on the sofa incase he hurts himself and come and sit safely for a cuddle. He went bang. Screaming, kicking, calling me stupid, I'm going to shoot you (all come since being at school where he heard other children saying it - we are very careful with anything on tv etc at home). This went on for about 20 minutes. I'm so exhausted with it all and being judged by other parents I snapped... I burst into floods of tears in front of him and said this is not how we behave anywhere lets take a moment. I need you to sit there with me while I cook dinner so you are safe. There were lots of tears on both sides. When hubby came in, he spoke to him calmly but said you need to apologise (which he doesn't mean or seem to understand at all. He doesn't like it if someone cries but empathy is learnt if yswim).

We've had 3 weeks where he has been amazing and quite calm.. he's had 4 days weeks due itninsets and bank hols and then bang. It's like jekyll and hide. It's getting worse at school as he can't contain excitement or will do something to another child and is very impulsive but doesn't know why he does things half the time... I know a lot about ASD/PDA but I feel so so lost... is there anyone with any useful advice or support. I feel so lost and like the worst mum. Thank you if you've got this far.

He has ASD, PDA and is a very small child. You can’t parent the autism out of him.

First things first. You are NOT an awful mum.
Is he 5 now? I’d say this is still really young for school, especially if he has SEN. The part where you say about bank holidays etc do you mean he coped better for 3 weeks and now he’s having longer weeks he’s struggling? That to me would say his limit is 4 days. Would school accept part time attendance as he’s so young and without an ehcp? If you can facilitate that?

You’re not doing anything wrong, it’s just really hard 💐

You’re not an awful mum (sending hugs). You can do an EHCP yourself and it’s often faster - the official 20 week deadline is the same whoever starts it, but if school do it they have to show they’ve tried a lot of other stuff first. Both school and parents will be consulted whoever starts it. Your local SENDIASS can point to advice. I have two bits of advice (I) don’t be too optimistic on it, tell it like it is and (II) it’s very emotional because suddenly things are in black and white. It took me weeks to do mine because I was thinking ‘is this really our life?’

Good luck

Yep. I feel you and you are absolutely not an awful mum. It really can be so so hard!
Enjoy the good/easier times when you can & remember them when it goes to shit.

Happy birthday 🍾Xx

It sounds as if he is not managing in his mainstream school and you are facing the brunt of his dysregulations at home, which will be his safe space, where he can let it all out.

Ultimately, he will need an EHCP, school can start this urgently if they are so inclined, but you will need to push hard for it. It does sound like his limits are being exceeded with longer weeks at school, it's nearly the end of his reception year too, it's a huge cumulative load on his lready struggling nervous system.

It is a very big jump into year 1, so much more structure and more formal. ASD/PDA/trauma kids find it very hard. School fell apart for my boy very swiftly into year 1.

I would see if you can meet with the SENCO to expedite things for him before school becomes to much altogether.

If he has PDA and was told to apologise and was actually willing to do it - even if he doesn't really understand the concept 100% - then it already sounds like you're winning tbh. DS has ASD but not PDA and saying sorry was not within his remit as a young child, he could never understand why he was wrong because his behaviour made sense to him. To have ASD and PDA, accept you've done something wrong and be willing to apologise for it when asked at just 5 years old - well that's pretty impressive IMO. So you must be doing something right!

I agree with a PP that it doesn't sound like he's coping with the current set up at his mainstream school. I'd also say that it might help help to rephrase how you talk to him, trying to avoid all demands as these are too anxiety inducing. 'No', 'don't' and 'can't' can really affect kids with PDA so I would miss out saying 'no jumping on the sofa' and try 'what would you like to do now? shall we have a big cuddle?' or give him a choice of things to do if that works better for him. Basically distract him like you would a much younger child.

Pretty sure you can start the EHCP process yourself, others will know more about that than me. But I think it should be started asap.

Be kind to yourself OP. You are doing your very best here. I am sure all your family and friends love you very much just as you are. Bet everyone around you admires you. Some days are great some are shit but tomorrow is a brand new day and could be fine.Fine is enough. You sound exhausted and I think bath,pyjamas and bed could be a fab way of spending your birthday or whats left of it.Bless you. Happy Birthday lovely lady.Keep going and stay strong. You are doing enough and you are enough.

You’re not a bad mum at all. Happy birthday and I’m sorry your day has been ruined by everyone getting upset.

My wee boy is not diagnosed but defo has ND traits and has meltdowns with the screaming, swearing etc you describe too. He’s 7 now. He has some health stuff that could easily have made him more overwhelmed (e.g. toileting issues).

With him it’s full fight mode (fight or flight) because he’s overwhelmed. There’s no point debating it as he can’t process anything we say. We keep him and ourselves safe and he calms down and is sorry. He has more frequent outbursts when he’s anxious about things even if he doesn’t know what he’s anxious about.

We encourage him to take breaths, to talk about when he feels wound up or worried even if don’t know why, eat well, sleep as well as possible etc but it’s an emotional immaturity and hopefully will improve as he gets older.

Thank you all so much for taking the time to respond to me - I really am so grateful. School have said they are too busy and likely it will be September or October before it's even started ;( I usually follow my gut but I feel so confused as to what the right thing to do is.. new school? Move away? I just feel full of panic all the time!

I was reading through looking for the “awful Mum”
That isn’t you. You are doing your best.
Sounds like you have had such a tough time. Hard enough getting a diagnosis and support without all the medical trauma you have experienced.

If you are in education you may know about service level agreements for the EP service and specialist teaching service. School may have used up their allocation slots for this year.
As others have said you can apply for an EHCNA yourself.

For home try not to put too much pressure on yourself. I’d focus on one thing at a time if there are lots of needs or difficulties. Use “ planned ignoring” when you can and if the behaviour is not dangerous or harmful.
Look at the book The Out of Synch child has fun. Lots of activities for sensory needs with things you will have at home.

Maybe look for local parent support groups or SEN play schemes for school holidays. Meeting other parents who “ get it” should help.
Look online at the Local Offer for your LA for support and services.

Hello, i would suggest starting the EHCP process yourself by writing to your local authority requesting an EHCNA, IPSEA website telks you how to do this.

At home, i think you need to make allowances. If he has ASD he may take a long time to process what you are saying. You may need to repeat it three times. So it isnt realistic to expect him to react to a request about jumping on the sofa straight away.

With the f word, many children his age will have heard swearing but they arent repeating it. The reason he is saying it is because he has big feelings he cant express. If you and the school can see it as linked to his trauma it might help. Try giving him a replacement word to use when he feels angry or overwhelmed, like “stop”. Dont tell him to stop swearing but really listen to him when be says “stop” and show you are giving him space and you understand he feels bad. Basically you are trying to replace the f word witg stop by making it as effective or more wffective in meeting his needs.

You're definitely not an awful mum and it sounds as if you've been through some serious trauma yourself. A near death experience is not something you recover from just because youre medically fit after treatment.

Give yourself some grace. Can your husband tackle the school? I hate to suggest this, but I have a suspicion that school admins pay more attention to well prepared and articulate dads than mums. I think they need to be pushed very forcefully to provide an appropriate educational environment for your child, and sooner rather than later.

In daily interactions, sometimes the phrase, "I can't let you x/ y/ z.." takes the direct confrontation out of a situation. There's no right or wrong here though, and what works well one day has the opposite effect the next.

Hang in there.

Great advice from others. Nothing to add except you’re doing brilliantly.

happy birthday. Double celebration next year maybe.

I found a book called The Explosive Child was really helpful when dd was like this.
Definitely apply for an ehcpna yourself too, don't be put off.

Dd is much more regulated these days, with an ehcp in place and great support from her school (don't underestimate the importance of a great teacher who takes the time to get to know the child!)

It's rare that dd swears or lashes out now, but we've been in your position, and still have the odd blip. You'll be on your knees at the moment, so it's crucial to look after yourself first and foremost then you'll be in a better place to help your ds.

With support, improvement is absolutely possible so do please try to hold onto that at the darkest times. The fact that you're doing everything you possibly can for him shows you are not a terrible mum, you're doing an amazing job even if it doesn't feel like it. There are lots of us in similar situations, even if you feel alone sometimes. MN SEN boards are great for advice from others in your position.

I really wouldn't move schools. You'll lose the evidence at the school you're at with no guarantee the new one will be better.

You don't need the school to do anything to apply for an EHCNA (the first stage of an EHCP process). You can submit yourself with the evidence you've got already. Look on the Ipsea website for a model letter.

You can ask the school for copies of any support plans and reports he's had. You could also do a Subject Access Request which will give all correspondence concerning him, meetings he's been discussed in. Telling the school that you'll need to do an SAR if they won't write you a report for the EHCNA might make them do it.

You're not a bad mum. My son is autistic and sometimes I snap, or shout, or am less patient than I could be because I'm human.

Thank you all for your replies. It has been a stressful week with it being half-term. I have started all the paperwork for DLA and have written his EHCNA and am waiting for a independent sen advisor to read it through before we go forward. He didn't want to go bsck to school and when he came home he was angry, upset, and has learnt a new word. Idiot. I've tried ignoring him and explaining why it isn't very nice and the continued to praise all the good but it doesn't seem to work. He said some very unkind things to his little brother last night but they seem to be things that are said to him and unfortunately they stick. My gut feeling is it isn't the right place for him. It feel very lonely and isolating at the moment. But thank you lovely munsnetters for replying.