Had such a cr*p day!!

[Dingle]

Mum was back in hospital, Amelia thrown her breakfast all over the floor yet again, it's becoming a daily ritual! Rushing around trying to get the kiddies ready for school I had a phone call from dd's paediatrician- 8.30 in the morning, obvoiusly she doesn't have children- let alone one with SN! She was just confirming a new appointment for an assesment because of my application for a blue badge. I explained that we'd been on holiday and I needed to arrange child care for ds before I could definately confirm. I was just so low, I burst into tears, I am just so fed up with the constant battles.

Later on our portage worker rang, she is supposed to visit every fortnight and we have seen her about 4 times so far this year. She explained that she had almost finished Amelia's closure report and had stated that she was a proficient walker!!I am sorry but we are talking about a child with a wide gait, hyperflex knees and the need to wear AFOs and on top of that a learning disability!

Will the rest of my life be a constant battle, I just can't see the light at the end of the tunnel.

[Fio2]

i know how you feel, my GP said that dd wasnt 'physically' disabled as she could walk I nearly feel over, she almost 6 and needs constant sup[ervision, can walk up but not down stairs. my back is killing from all the lifting i have to do with her. then he asked if she was a burden I will not make an appointment with him again thats for sure

Hope your Mum feels better soon xx

[Dingle]

Oh Fio!! That's just the whole, sad, point!!! All my time and enery is spent fighting her corner- I have no enthusiasm about working with her ATM, it all seems to much of a chore. So instead of enjoying my wonderful little girl, I do feel she is a burden. I hate saying that but I just have no energy left.
I really wish that some of these people would take a busmans holiday as such, to find out how a child with SN rules your life to a certain extent.
Am I such a failure, should I just give up the fight and get back to being a mum?

[Fio2]

Dont feel a failure we all feel like this from time to time. I felt completely paranoid that i came accross as that dd was a burden and it really upset me. the whole incident. i was worried she wasnt well and didnt need a cross examination at the same time. her teacher has wrote in her book that she looks exhausted and she would be interested to hear what the Dr had to say as if she is questioning my judgement aswell. It makes me feel guilty. i am trying to do my best and it is such hard work but i still love her all the same. i have such moments of paranoia though as though i am somehow not good enough

this most probably isnt helping you

[Dingle]

It's good to know I am not alone Fio!

[Chocol8]

(((((((((((((((((((MASSIVE hug for Dingle))))))))))))))))))
and a
(((((((((((((((((((MASSIVE hug for Fio)))))))))))))))))))))

cos you both deserve hugs for being so lovely...and HUMAN!!! Don't beat yourselves up about not being good enough, you are both doing your best and that's all you can do. Some of these so called "professionals" beggar belief! (take off preachers hat and slink away).

[anniebear]

Sorry you are feeling low

Hope your weeks gets better

xxxxxxxxxxx

[coppertop]

No wonder you're feeling so low after such a cr@ppy day.

[Dingle]

I have started to doubt the need for a blue badge. Surely if our needs were relevant, these people would recognise the facts. Do I just give up?

I am still only half way through re-applying for DLA too! A few Mns have so kindly given info to look at, and I am sifting my way through it all!

I just feel that this is it, my life will be a continual fight with forms and authorities. Once I am up to date with DLA I will then have my battle for statementing to contend with.

Oh joy!!

BTW, my mum was sent back home from the hospital!!Despite her phoning several times last week, when she recieved the appointment letter, she advised them that she still hadn't had all of the appropriate scans she needed before her op. she was told that it was all ok and was scheduled for surgery Monday morning. Surprise surprise, they checked her notes and said they wouldn't operate without the last scan!!!
The system stinks, I have no faith anymore!

[maddiemo]

Sorry it is all so crap at the moment Dingle.
It is very upsetting when the people that are supposed to be supporting you have so little understanding of your dd.

I am also in the process of reapplying for DLA, I have heard of so many people being turned down recently it makes me anxious that we could lose it.

Good luck with the statement!

[Blossomhill]

So sorry you are going through all of this right now Dingle.

It does make me so that parents whose children have sn need to prove that they do all of the time.

Just to reassure you though. Usually once they are at school things do slow down and the fights do lessen.

Hugs to you Dingle. Remember you are doing a brilliant job xxxxxx

[coppertop]

The whole DLA system is just so cr@p. Ds2's application took ages to do because while I was busy trying to point out why he needed constant supervision, ds2 was busy demonstrating exactly why he needed constant supervision. Arrgghh! Ds1 was 5 last month so I should be applying for mobility but right now I just cannot face another one of those forms.

So sorry to hear about the way your mum's been messed about, Dingle.

[maddiemo]

My friend did not apply for mobility for the same reason CT.
When ds turned five I asked for his whole case to be looked at again and applied for mobility at the same time. I then got DLA awarded until seven.

Sorry for hijack Dingle

[heartinthecountry]

Dingle and Fio - hugs to you both. I had a really shitty week last week so know how you both feel. Felt like everything was just on top of me.

Oh how I long to just be a 'mum'.

[Davros]

Sorry to hear you've both had a crap time. Don't let them sow seeds of doubt though, you are right to fight for things and your children DO need them. BH is right, I find we go through periods of lots of activity, esp at the early states with dx, statementing, DLA etc all at once. There are phases when all this lessens but then I can always manage to think up something new or exciting like Direct Payments! Dingle, did you put the Portage worker right and how come she is writing a closure report? How did the Paed react when you blubbed? Does them good imo. I think training should include spending time with a family at home.

[JakB]

Agree entirely, Davros. Professionals would learn so much from seeing what life is like at home. So sorry life is so hard at the moment, Dingle and Fio. Thinking of you

[Dingle]

Davros- she completely ignored it, didn't even comment when I apologised!

Feeling much more positive today. Ds came home yesterday with a letter in his school bag. It was the feedback from Amelia's In school review meeting.

The comments they made were;

To make an appointment with SENCO ASAP
To remain on School Action+ and monitor regularly.
To provide SALT & Physio in Nursery
Staff to visit SN nursery!!