"I'm an SEN mum"

[drspouse]

Of course my child goes to a school you haven't heard of.

Of course I have a full pack of complaint letters in my back pocket.

Of course I'll leap on you to exchange stories if you're another SEN parent.

Of course I know what all the acronyms stand for, DLA, EHCP, AR, LEA, we've got it all.

Of course the LEA doesn't bother providing my child with the education they are legally entitled to.

Of course I don't want to discuss your child's grammar school application. No, not their prom dress or school trip woes either.

(Feel free to continue in the TikTok vein, if you have contradictory experiences just put them down, no need for discussion, this is Chat not AIBU!)

Unfortunately I agree with this statement as well. I don’t see my child reaching old age. It eats away at me every day.

I am an SEN mum I don’t give a shit that you judge me for giving my 18 year old a pizza on Christmas Day.

I can’t just change things because sometimes things change.

No she can’t just put up with it.

Been released from CAMHS banging my head agains the wall trying to get adult mental health involved. I just need help.

SandrenaIsMyBloodType · 15/01/2024 14:26

I’m an SEN mum and I believe that one day I may have to bury my child because her mental health struggles will overwhelm her.

Sorry that was in response to this.

@Lovemusic82 I think we will be pushing for Residential (I had a conversation with IPSEA this week) at some point. Dd1 will be off to university, dp is older than me, dd2 is 14 and we are currently struggling to manage her with 3 adults. School is struggling to manage her. I am not working, as it takes up so much of my time and energy. I honestly feel if I had committed a serious crime I would have a shorter prison sentence!

My eldest is at uni, I have to say it’s been much harder with it being just me and dd2, dd1 was very much my 2nd pair of hands when taking dd2 out, now I feel trapped as taking dd2 out alone is pretty stressful, this has also made me more lonely and isolated. You’re right, it does feel like a prison sentence. Adult services are looking for possible residential or housing dd with full time carers but that could take some time (years), if I can get her into a 5 day placement I have a chance of finding part time work and having some kind of normal life (until she’s home).

I agree completely. Out and about is very challenging and she's only just 14. It is only going to get harder. Atm, Social Services can't help us with Moving and Handling, as the body that do the training are not doing it for parents.

I am a parent with a SEN child, SEN brother in law who's parents have died (Adult Social Services have left us to it) a diabetic probably autistic father who's 83 and increasingly obstructive and just recently diagnosed with SEN, myself. My DNephew is SEN my two sisters as well (One ADHD the other HFA)

I also have a Schrödinger's label of a husband - he believes in SEN when his brother is being a pain - he's "A little bit autistic" 😡 himself but refuses to acknowledge his child's dx or mine - we're just lazy and disorganised, and of course we could chose to be better.

I am also aware of the fact that our family "quirks" are at the high functioning end but the pain and confusion of navigating a world that is full of hidden rules has impacted on both my own and my child's mental health. I am relived that my child's university takes his label seriously and has put the scaffolding in so that he will have a fair chance of succeeding, but it has been a long journey and I am exhausted. My sleep is buggered even though he's not at home any more. My anxiety is constant. I am trying to retrain my ANS to calm down. I fear that it's a lost cause and I will spend the rest of my life in fight/flight.

I take my hat off to other SEN mums.

What always pisses me off is some people (including professionals), seem to assume SEN parents have lots of free time, more disposable income and ready access to vital resources and niceties. Noticed that over the years when events, workshops etc are organised

I let mine have pizza Xmas Eve, day and Boxing Day. That's what they enjoyed and wanted. Don't care what other people think.

I always found this so insulting and an awful waste of precious time.

I’m a SEN mum and yet again it’s been a shit bedtime because he’s had to change from his clothes to pyjamas. Tomorrow morning it will be because he’s had to change from pyjamas to clothes.

I’m a SEN mum and I’ve got a black eye from tonight.

I’m a SEN mum and I’m tired. Tired of the screaming, the hitting, the heartbreak. Tired of my life.

So sorry, it's hard.

I'm a SEN mum and I was playing football in the park in the dark....in minus 2. It was great. Dc had fun. However, the hour before was not great and I was only at the park as it had all gone tits up at the park and ex was locked out of the car, and I failed at hostage negotiation over the phone.

I'm a SEN mum and I dread phone calls from ex asking me to ring dc. Because I need to talk him down over the phone and it pisses me off that ex can't deal with it because I just want a break.

I'm a SEN mum who has a dc with complex challenging behaviours

Today I was offered an Earlybird plus course so I could pick up behaviour 'tips and advice' from other families on the course. I wonder what tips and advice I could share with them? The best time to turn up to A&E after your child's injured you again? What's the best way of storing anything sharp/pointy/ anything that can be used to make weapons? * Where to buy such glories as one way screws, home office approved pick proof sealant, challenging behaviour radiator covers and sledgehammer proof TV cabinets?

That's the sum total of help in my LA.

*For those not in the know EBP is like your introduction to having a child with SEND. It's also hugely patronising

**Builders toolboxes. The contents can't be seen and they are pretty impact resistant. Lockaboxes shatter on impact.

I used to.have a link to a furniture company that made tough furniture... Locked cabinets for TV.

We had furniture made. (It was as cheap as buying good quality stuff and more robust) The maker kicked one of his demo products hard.

I'm a SEN mum and I assess furniture for it's ability to withstand a meltdown.

it was interesting explaining to the OT for one DC that we did not have mirrors in the house to look in.

Thanks for the tip about pointy sharp objects most of which are hidden.

Luckily my PhD came into play and I quoted the research studies on this programme.
There is actually an evidence based parenting programme for ADHD parenting (New Forest) so I politely asked if we could do that but they don't have anyone qualified to run it.

Yes!

My daughter was late diagnosed at 18 with autism.

I was offered a parenting course.

I was like she’s 18!! Don’t you think it’s a bit late? Maybe we figured all this shit out for ourselves over the years?

Anyway, I went, showed willing and all that. Hoping for some kind of magical secret. No. It was useless and borderline insulting. The person running the course spent most of the time asking for my input like I was a qualified expert being paid to teach your grandmother to suck eggs

Gosh I feel heard

I'm a SEN mum and no we can't go abroad she won't just get over her fear of flying.

I'm a SEN mum and she isn't a 'bit anxious' she is falling apart.

I'm a SEN mum and yes she might seem fine it doesn't mean she is.

I'm a SEN mum and no I'm not paying for private school because I want to I'm paying because at 7 she was suffering from such severe anxiety in her state school it was becoming dangerous and KCC was at least a 2 year wait.

I'm a SEN mum and I worry if she will ever get a job.

I'm a SEN mum and so few understand.

DH is retired now and I think he should set up his own SEN legal consultancy. We are not really the experts in some of the in-house stuff but school and EHCP and LEA we have it nailed. I think we saw it coming when we adopted from overseas (enough paperwork to destroy a forest).

@Joey1976 we managed to get DS over his extreme reaction to flying by some visits to air museums/the half a plane at Manchester airport/a very short hop for our first family flight. But I am aware this might not be for everyone.
We had done long haul with the DCs as small children and we managed that again this summer so we're very proud of DS!

I think you have misunderstood the point. This is SEN mums being able to say what they struggle with. No one is laughing. I did think the same as you for a split second and then realised what it was.

I'm a SEN mum and the chronic sorrow I feel is so hard to live with

I'm a SEN mum and I feel a hundred years old

I'm a SEN mum that misses her old life, and does not recognise the woman in the mirror at all (when I actually get to look in a mirror)

Thank you for this thread

I'm a SEN mum and today I have cried a lot. I expect tomorrow I'll cry some more.

-I am too bovine to have an actual name. I am to be referred to by my reproductive function.
-I am too dull and inexpert to have any worthwhile insight as to what my child needs, despite 100,000+ hours caring for them.

-I am too insignificant for my correspondence to be responded to, even when seeking basic factual corrections of my child's official records.
-I am not allowed to have views on interventions, or ask questions about the evidence base and possible benefits and disbenefits for my child. For I should know that the experts always know best and I am just a Mum.
-I am too inflexible as I become distressed by being punched and sworn at on a daily basis as a result of my child's distress. If I could only accept the violence, rather than seeking to reduce it, then apparently I wouldn't feel so distressed.

-I am responsible for repairing the damage caused to my child by a social environment in which they are poorly understood, victimised and on occasion, brutalised within services that are meant to be supporting them.
-I am responsible for all of our problems (but absolutely none of our progress).
-When I uphold my child's basic human and legal rights I am 'difficult'.
-When I flag that treating my child punitively for behaviour arising out of their disability is potentially unlawful I am 'uncooperative'.
-My child remains a superstar despite their miserable experiences and the daily distress this results in.

I'm a sen mum and we've been up for 2 hours and likely to be for another 2 more. I've got work in the morning

me too, @SandrenaIsMyBloodType. One day I won’t be there and the phone will ring and this thought terrifies me. But also knowing I have to let her go and have her life, I can’t wrap her up forever, for all our sakes.

I am a sen mum and exhausted. Every day i wake thinking what will it be today. By 9am I am already running on caffeine to get me through.
everyday constantly in the back of my mind, how will my dd cope when she legally becomes an adult. Will she be able to get a job, live independently. What if something happens to me. I walk into work with the smile plastered on my face as though I’ve not a care in the world if only!
but for now I’m hoping she gets through the school day(which she will, as masking all day) and that the minute she leaves school to get in my car she won’t start kicking my doors, and that we manage to get shoes and coats off before she starts lashing out at me. And no I don’t need a parenting course my dd needs help but no one can help as she doesn’t meet the thresholds and even if she did there is a 3yr wait. But I will carry on as my dd needs me and I will always be here for her.