parents with special needs children to rant !

[Emma2345]

Hi guys so I’ve started this thread so that us parents of special needs children don’t feel alone no matter what this is (ASD ADHD SWAN SYNDROME ANGELMAN SYNDROME RESPITARY ) Any special needs or disability and so anytime day or night anyone is here to listen and understand as well as communicate with one another because I no sometimes us parents we feel so overwhelmed and we feel like like we’re at rock bottom and don’t no if we’re doing right for wrong and sometimes we feel like we can not cope ❤️💙

Al start !! so tonight has been one of them days and nights where all 3 of my SN children have been at it all day physically violent towards me and one another trying to separate and calm them down to then letting them do what they want to have an easy day or night one wanted to play in toilet water🤣😩😩(we’ve all been their just let them do what they want to stop the screaming and meltdowns) one wanted to unravel all toilet rolls and the 3rd wanted pour all bath soaps on the floor and mess and slide in them ) they do not sleep I get betweeen 1-3 hours sleep a night and that’s if I’m lucky then it began again at dinner I made them what they asked for and apparently it didn’t look like it did last time so it began again currently still awake fighting sleep and having meltdowns !

It's so hard isn't it ? 1-3 hours of sleep is so less . I went mad when my son never used to sleep.

Yep it really is I have 3 children who literally never seem to sleep constantly crying having meltdowns or being violent even when they are asleep I have to watch over them because one or the other wakes up and they try to escape the house or open windows ( I have fire windows) so they open extremely wide have no sense of danger can not communicate or understand common dangers it’s so so hard honestly wouldn’t wish it on anyone don’t get me wrong I love my children to bits and would go to the ends of the earth for them but all 3 of them with SN and extremely violent behaviours is extremely hard to handle xx

Hi thanks for this thread, I actually feel like there isn't any support for us parents out there once you get a diagnosis well seems that way for me! My son was diagnosed with autism last summer and as soon as he was diagnosed they signed him of chams and everything said there's some leaflets he will get support he needs in school.. so what do I do now I am a mother working mother of 5 had to reduce working hours as no childminder can deal with him hes dad works away so is basically never home and he's the 2nd youngest so others have been no problem I've no experience of this although I've sort of picked up some things along the way as I've been battling since he was 18month to find out what was up with him he's now nearly 6! School now want to get him accessed for adhd what is taking up to 5 year and they can't pick up from autism assessment as its been a year since diagnosis. All this help for children and waiting is so shocking, and trying to battle it in little sleep each day is draining!!

I feel your pain with meltdowns and violent child I have one but he's younger brother is starting to copy his actions it's so draining isn't it. You feel awful but if you want an easy day you have to give in sometimes and think of the mess later, my son as sensory issues and likes to rub certain textures in his hands and face it's always a messy situation some days I go mad but other days I think it's not his fault it's satisfying his needs, very hard work at times isn't it especially when you living on little rest

Not a rant but just wondering if anybody can give me abit of info. I recieved a call yday telling me my son is now approaching the top of the list for an appointment for community peads....referal from school. What should i expect at the appointment?

Thankyou for this thread its really needed, my daughter is nearly 5 with constant crying screaming and meltdowns shes violent and i am physically and mentally worn out and now my 2 year old is mirroring her behaviour, i have 4 children and i am struggling with her extra needs im so mentally and physically worn down, she brings me to the point of tears most days. There dad is away at the moment so dealing with it all on my own plus the torture of the dla claim wait, a thread like this is good for people like me that have noone so thankyou 🙏 xx

Practically, OP, have DC had home OT assessments to make the house safer and better meet DC’s needs? Including looking at safe space beds or similar if appropriate and a lock on the bathroom door if they would help.

Do they take anything to aid sleep?

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DC?

Do DC have EHCPs?

@GemzZ92 it depends where you live. The process isn’t the same everywhere. They will talk to you about things like developmental history, family history, pregnancy, current difficulties. They are likely to weigh/measure and there may be a physical examination &/or tasks for DS to do and questionnaires to complete.

@Mamof2devils if it is something you would be interested in, Scope offer mentoring to parents of DC diagnosed within the last year. What support is the school providing? Does DS have an EHCP?

Great idea for a support thread.

My son is 7, diagnosed with ASD & epilepsy. He's also on the wait list for ADHD.

He's so behind academically, he can't read or write yet, asked his senco about an EHCP and she replied "i'll be honest he doesn't warrant or need an EHCP"

he has one-one in most subjects. I sometimes wonder if he has dyslexia but the school also said "we haven't noticed anything relating to that"

why is everything such a battle 😫

my son is under a community paed. He's been under her since he was 18 months old.

They will get an overview of your child, any troubles or concerns you have, they can refer to other health professionals if necesssey. We usually see her once a year now

she also prescribes my son melatonin which is a new measure to try and help him sleep 😫

My daughter has just been prescribed melatonin and shes been taking it for a month, have you noticed any changes in your sons behaviour, ive noticed an increase in her aggression x

@Shazzle88 he's quite aggressive anyway so i'm not sure whether it's increased it or not 🙈
it has an impact on sleep sometimes other times it doesn't so anything 🤣

Yea my daughter is aggressive anyway too thats why I'm wondering if its the melatonin or just the fact that she has more energy to be herself lol xx

@Shazzle88 just had a quick google and it definitely says mood changes are a side effect.

Is it slenyto she's on? what dose?
I find as my son gets older he gets more and more easily frustrated. I've always put it down to that but maybe it is the medication.

He's also on keppra and apparnetly that can cause rage 🙈

Shes on circadin 2 mg hun xx

@Ljstar you can request an EHCNA yourself. On their website, IPSEA has a model letter you can use. Don’t let the SENCO put you off. Some schools incorrectly tell parents their DC doesn’t need or wouldn’t get an EHCP but the parents go on to successfully make the request themselves.

I am exhausted trying to get the right educational setting for both dc's. Little support in place at the moment currently trying to ds referred to CAMHS is proving a challenge, referrals have been refused twice supported by school and GPS. Any ideas? I don't want to go down the private route for a couple of reasons. I know the wait will be long once accepted, however to be waiting so he can eventually recieve support will be a humongous weight lifted.
He is as big as me the behaviours are so extreme I can't pinpoint them to sensory issues or anything else except struggling with another condition possible adhd/ bipolar have both crossed my mind. He has a diagnosis of asd.

@Wednesdayy123 from other threads, I know you are appealing the EHCP, MH support can be included in there. You will need evidence though. I know you said you didn’t want to go down the private route, but an independent assessment for the EHCP appeal would help. You could also request the health sections are considered as part of the appeal.

I meant private psychiatrist/ adhd assessment.
I have secured a independent EP for dd she is doing assessment before July so that's good.
I didn't consider even know this however now you mentioned sounds obvious, if it was in F it would have to be provided.
I have consultation with EP for dd next week so I will ask some questions about this she is also seeing if/ when she can squeeze ds in. Other EP's are adamant that I have to wait up to 9 months, but i am on wait lists.
I mentioned MH in appeal paperwork however making it very clear that because the setting was so unsuitable sensory needs not being met etc. behaviours were extreme, MH has improved since not attending.

Aw you’re welcome for the thread yeah I totally agree once diagnosis have been done they just close the book on you it seems I don’t yet have diagnosis for mine but 100% I no they have it my 5 year old is currently awaiting referrals for ASD after the Half term and ADHD when she turns 6 she’s a girl and masks massively at school and both my boys are extremely violent excessively stimming no eye contact no peer relationships at skwl and non verbal and have already been accepted on the pathway for an autism assessment ,, but like you said it’s at least a 2-3 year wait just for this xx

Hi they just ask yourself questions and your child (if they can communicate) they also play games with them to determine fine motor skills language skills excetra and they also checked him for distinctive features or marks like birthmarks ears and stuff as some of the symptoms they display could be a genetic thing which is normally miss diagnosed for Autism that’s what happened in my little boys community paediatrician appointment sorry I can’t be more of help he had this done over a year ago and I can’t remember anything else they did x

I feel your pain I am a single parent to 3 children all with needs so I feel your Pain I cry most nights and days myself
i am physically and mentally Exhausted with it I don’t get a break even if it’s just to have a coffee or a bath in piece because no one will have them coz their too much to handle their dad comes 1/2 a week to see them and he doesn’t help when he is here he makes them worse 🤣😩😩 xx

It feels so lonely doesnt it😔😔 im always here if you need to chat xxx

@Wednesdayy123 Just wondering if you had to pay anything to get on the independent EP waiting lists or is payment only due nearer the assessment time? As this is something I’m considering for next year.

@Ponche some require at least some of the payment upon booking.

@Wednesdayy123 as well as EP and OT, if you can afford it, you could look at an independent clinical psychologist or psychiatrist for a report specifically for the EHCP. Some of their report would feed into B/F and some into C/G. If the EP you are using for DD can’t fit DS in, keep trying EPs because cancellations do come up.