DLA WAIT TIME THREAD 43

[Tracy37x]

DLA wait time thread 43

Its weird isnt it. It totally reacts different to her. She hated the feeling on medication. But even now she is 17 and it still has the same effect. Im so glad you commented as i get some weird looks when i mention coffee 😂 x

This!!! Are you living my life? 😂 it’s so strange for me to speak to someone who knows EXACTLY where I’m coming from! You only truly know if you have lived it, it’s a minefield! The level of stress when she’s screaming and the little ones are crying in fear is unreal, won’t remove herself to calm down and will follow us round the house 🤦‍♀️

Shes 12 and just started high school. I’m thinking hormones etc will also be contributing. My daughter is the same, I have to do a mini interrogation to get any information out of her about her day to find out if anything has happened to upset her. I’m still getting used to trying to word things carefully. Thank you for giving me hope that it will get better 💗 it’s sometimes hard to see it when you’re in the thick of it! .

Was it you that is going for an MR? Forgive me if I’m wrong 😅 if so wishing you all the luck in the world and hope you get what your baby deserves🤞 xx

Wow that’s amazing 😮 I never would have thought of trying this, will definitely give it a go. Made me chuckle at the end too 😂 I needed that, thank you.

Sorry I’ve been taking a while to respond to you she is kicking off as we speak 🤦‍♀️

I have noticed you are continuously here supporting people despite your own struggles and being awarded. You are a diamond 💎 hope you are looking after yourself too xx

I wont lie to you its bloody hard. And il put my hands up and say best thing i ever done was call the police one night. I was in a state. My home was trashed, i had knife marks in cupboards. It was like she was possessed as she was laughing as she was doing it. I got the blame for years!!! Oh young mum its all my fault. A lovely police officer came. Put a safety plan in place which was lock on cupboard to lock away sharps, bathroom was the kids safe room, he spoke to the mental health nurse at the station and called us back with info. And he got us a family worker. It took me calling the police to feel listened to. Reward charts is like throwing an insult. Worry monster lasted a week. Cant take her phone off her omg DONT TOUCH THE PHONE!!!!!!!. You will get there. Just be prepared for rock bottom as trust me you havnt hit it yet. My own mother told me to put her in care 😡. No one understands unless they go through the same. What works one night wont work the next time. My advice. 1. Dont try punish her the day after, she has no memory of that event anymore. 2. Stick to routine, shes now 17 and still gets into bed at 9.30pm. 3. Dont change plans last minute. 4. Always let her know what is for dinner in the morning. 5. Keep bath/shower days the same every week. 6. No surprises she wont be able to handle the emotion. 7. Get school to pre warn her of any sub teachers.
Yeah im waiting for MR hun xx

Awarded Friday scan date 13.02 did post on last post jut always handy to have some insight on the new post where we could be at. New claim. My question how long does uc take to make a decision on back pay please x

@Emjones32 Hopefully someone can help give you some advice. Iv seen it varie for people with some being few weeks to worse end people having to submit a complaint 😬

We went to Dudley Zoo and I was so happy as we saved a bit of money but at the end my son had a massive meltdown, had everyone staying, I had to wreste him into the car because he refused to get in , he screamed all the way to Flame and Ice . Then I cuddled him for a while and he calmed down . So I was thinking about the fact people make out that your just taking DLA and and benefits when I'd rather have had a healthy son who didn't need benefits in the first place.

You have to get HRC for them to even consider HRM under the SMI rule and you have to be able to tick all the boxes for the test under SMI rule if that is what your hoping

Fee that’s right!
we feel like we walking on eggshells constantly. That is a good way to describe things.
And yes we have definitely learned what to say/not say to avoid any meltdowns!

Yess my whole day is also like walking on egg shells with my 3 year old, his own mind is his worst enemy and sometimes I can't even identify the triggers. Very particular in his ways and shows signs of ocd so I'm trying to keep routine ( now and next ) to help him feel less anxious. He is only doing one hour with me present at nursery at the moment and absolutely everything bothers him, I get hit because I'm his safe space 😞
I have tried walking him in the pram to the nursery and the sensory overload causes massive meltdown before even in the door which means I have to drive. Parking is costing me £20 for 5 days for one hour a day. His diet is non existent, digestives and doritos only. Meltdowns can last 2 hours 😪 wakes up almost every night from 1am until morning singing and babbling away to himself, banging the walls, shredding his blind. Such a clever boy with numbers, shapes and colours but no expressive or receptive language yet.
6.2 I'm praying for news soon 🙏

Parking 08/02 🚘

Everything is trial and error. But we pay the price when it comes to error 😬. For years i felt so alone. Im glad people are openly talking now. We dont have naughty kids, our kids just need parenting different and we have no manual on how its meant to be. But everyone giving advice helps another parent in their journey xx

Keep focused on the positives. I cried when i went to camhs as i felt all i was doing was putting my daughter down. I wanted to them how shes great at drawing or now has a top gcse mark in photography. And amazing with kids. But we get so lost in having to talk about the negitive we forget at times what they are amazing at 🥰. Our little humans love us all dearly because we are safe to them 💖 xx

Awww I absolutely get that feeling, the guilt of focusing on the hard times. The boy has been the absolute best teacher for me and actually made me realise who I am myself. I always felt different, struggled socially, 'needs to speak more' in every school report. I'm not diagnosed but I have no doubt I'm autistic myself. He made everything make sense.
I masked my whole life and still do but my little man doesn't, he walks on toes and jumps around like tigger and happy flaps until he is about to take off. I used to worry sick about hand flapping but now it's my favourite thing to see as it means he is happy ❤️

Parking 5/2 hoping it's soon now, as of this morning still not with DM

He is showing you its okay to be different 💖🥰. Always be proud of who you are. We are all different in great ways 🥰. If someone cant accept you for you......they shouldnt be in your life xx

I feel as though we are living the same life! With myself masking my whole life to how our children are!

This is why I love forums like this, makes you feel so much less alone in your situation. Just know you are doing amazingly because my goodness it isn't easy x

@Jodess hey. I made a carers allowance claim last Tuesday evening (7/5) I've just received a backdated amount into my account today xx

Thank you for sharing this, I’ve honestly been close to calling the police at times the behaviour can be absolutely terrifying can’t it, it’s as though they lose all control I’ve also thought of it like a possession, hurts so much to see our kids acting this way 😢

How awful that you were blamed for the behaviour though and told to give up on her 😡😡 people just don’t get it do they?! Honestly, I am so sick of the looks I get when we go out especially as I have two children with such behaviour, must be the parenting 🙄 Would put me off going out if I actually got to go out often anymore😅

I’m so glad you got the support you needed in the end but how awful that things had to go that far for you to get it 😔 your daughter is lucky to have such a strong mum that will fight to the end for her! I am fortunate as when I had more children and the behaviour escalated, I gained a health visitor so one day when she came to visit it all spilled out as I was petrified of her behaviour around the little ones, especially as she also likes to throw objects around when she’s lost it.

The HV ended up getting us a family support worker who has been invaluable to us for almost a year now. I didn’t even know they existed despite crying out to school for such help in the past. Best thing I ever did too! I would not have known what to do or where to turn otherwise. She has helped set up regular meetings with school, continence team referral, multiple online courses for me to attend and was also the one who told me about DLA. Not everyone knows what support is out there and how to get it and it’s the children who suffer but ultimately, the whole family too.

The phone omg 😂😂 so relatable!! Thanks so much for the advice hun, definitely gonna take that on board. Any tips getting her to wash/bathe more if you’ve any experience on that as she drives me insane with this 🤪 xx

Sounds just like my son also 3 except we haven’t started nursery yet as working with portage for now and starting stay & play sessions.

Frequent meltdowns, difficult to transition from one place to another, awake at night and impossible to settle, hits out mostly at me and his younger brother, I’ve already had two black eyes from him lashing out 😔 Same limited food everyday, screams if I even approach him with anything else.
Oh and don’t dare touch any of the toys he’s carefully lined up 😂

But he is soo intelligent (loves numbers and colours too) and is such a cuddly happy and loving little boy just cannot express his needs and struggles to understand things. I have found that singing has helped him sooo much with his speech while we are waiting for SALT as has not drawing attention to any negative behaviour. It’s so difficult, I’m still learning as I go along.

Not even filled out the dreaded DLA form for him yet, I just can’t face it after what I went through with my daughters form and still waiting to hear back 😩

Hope things improve for you, and that you get the news you are hoping for soon 🍀 x

100% it’s soul destroying feeling that your constantly putting them down describing their worst behaviour but it is the only way to get them the support they need to live their best life. I found writing all the positives down on a separate piece of paper and looking at it on the bad days to remind myself of all the positives helped me loads. My daughter is also an amazing little artist 💗

Aww love this, it’s everything to see them happy 💗 Same here I have questioned this myself after learning about how my daughter masks as I have always been socially awkward and felt different but put it down to social anxiety x

@Dani2612 Our gp actually ticked psychosis on the camhs form for them to listen. That was our 3rd referal in 8 years, then she stopped masking in school so they agreed to do form aswell. Im not back to stage 1 with the youngest 🤦🏻‍♀️ she isnt violent YET thank god. Let her play music in the bathroom while washing is what helped us. It makes it that bit easier knowing you have good support around you. My eldest is tiny, she is 4ft 11 and size 4/6. But when she is in a manic state god you would think she was the hulk. The strength that comes out 😬

Shouldn’t be so hard to be heard 😔 My daughter is struggling to mask as much now she’s in high school, but still tries, it’s such a big change for them.
Oh god I know, I have the same feeling of starting again with my son 🤦‍♀️ but feel a lot better knowing we are onto it early this time and I will be SO much better prepared to face the challenges that come, I’m sure you’ll be the same.
Music what a great idea, she’s massively into Britney Spears at the moment 😂 that could really work, thanks hun x