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Can't take any more :(

30 replies

armani · 10/06/2013 10:37

Sorry I just need to vent. We are going through a very tough stage with dd. we are in the midst of having her assessed through pead and ot/ physio. Results of her assessments have all come back really delayed (

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infamouspoo · 10/06/2013 10:42

hugs. Didnt want this to go unanswered. Can you have a restful day? Try and recharge your batteries? Maybe take a nap if you dont get much sleep. How old is dd?

armani · 10/06/2013 10:53

Thanks for your reply infamous. I'm trying to take it easy but the house is a tip from dcs this morning and I need to go to the doctors to get dds latest meds. Dd is 7 and in year 2.

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sammythemummy · 10/06/2013 11:03

HUGS Its a terrible feeling isn't it? I dont have any wise words as Im yet to go through assessments with my dd.

Sometimes I just let myself collapse and have a day where I "grieve" and usually feel much better the next day, we don't need to be strong all the time Flowers

Badvoc · 10/06/2013 11:17

I remember that feeling well op.
It's almost suffocating at times.
Am so sorry - I wish I had anything to say that would help.
I think recognising you are feeling overwhelmed is the fist step to feeling better sometimes...you can be kinder to yourself, not expect so much etc.
X

armani · 10/06/2013 11:25

Thank you for your replies, it's helpful to know other people go through this, although I wouldn't wish this on anybody. I am just going to take it easy today and have an early night tonight, I know I have to take it easy so that I can be strong for dd.
it's also not helping how school are not supporting her in any shape or form, I have req statutory assessment but this takes time. I feel awful sending her to school when I know they can't meet her needs but at the same time o feel torn as I know she needs things to remain constant at the moment, to prevent her becoming anxious.

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Handywoman · 10/06/2013 11:44

armani. i know that all the uncertainty is like getting sucked into a vortex. BUT, although it's taking it's toll hugely on you, you are succeding, by keeping things constant for her while at the same time fighting for longterm support for her needs. It's an incredible balancing act. You are overwhelmed, but doing brilliantly. Wishing you a peaceful day of 'time out' and recharging the batteries for tomorrow.

infamouspoo · 10/06/2013 16:21

I hope you got some rest. ds (10) has just gone off to the hospice so I have 3 days rest. I wont answer the phone so 3 days off from fighting for his seating needs, VOCA, hospital, therapies. All that overwhelming stuff before I step back into the fray thursday when we have a social services review.
And I have wine Grin

armani · 10/06/2013 22:28

Thank you handy. I'm feeling a little less anxious now, ready to face the day again tomorrow :)
Infamous I hope you have a relaxing 3 days!
My next step is to gear myself up for EP meeting this week, I'm feeling incredibly nervous.

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NourishingButtons · 11/06/2013 14:38

Hi Armani, so glad they decided to assess, tough now but best in the long run to have professionals state her needs, and school will have to meet her needs. You are doing a brilliant job :)

I really do empathise with the feeling, it really gets too much. Mental and emotional overload. Do you feel a bit clearer today? I have the first child free day in ages and have spent the day crying, just cos I can!

I dropped in all our evidence for SA yesterday and we hear if they will assess on 19th June - my birthday ironically.

Hugs xxx

Bluebirdonmyshoulder · 11/06/2013 14:52

Sorry to hear you're going through this.

Were you given any idea of when the cp / neurological investigations would start? And therefore, when you'd get some answers?

I know that anxious and sick feeling all too well. I have no 'cure all' to offer but I've found that when I'm feeling like that, really nice food, cake and wine all help. Blush Can you get an online delivery of some really nice food? Stuff that's easy to cook like some lamb steaks or duck legs. Spoil yourself a bit. (Apologies if you're a vegan!)

I hope that doesn't sound like a really flippant suggestion, it's just getting nice food in makes you cook it really well and enjoy the process which is a bit of a mental break in itself. And then you feel well fed and a bit spoilt and a bit recharged.

And leave the housework too. It really doesn't matter.

fanjoforthemammaries7850 · 11/06/2013 14:54

Sympathies ..have been through all these tests and it was a dreadful time.

Nothing nasty was found and I hope it will be the same for you.

Hope they don't drag the process out too much.

Badvoc · 11/06/2013 15:04

My gp referred my son for assessment for poss cp and poss brain damage when he was 7.
I left his office feeling like someone had kicked me in the chest. I had wanted him to tell me I was being silly, or imagining things. But he didn't. He was so kind when I broke down in tears. I told him I just wanted my son to reach his potential and he said;
"he will reach his potential because he has you for a mother"
My son was not found to have cup or bran damage as it turns out and we have been doing a lot of therapies at home (rrt, ait etc) with him for his sen.
He will be 10 this week and is doing very well in year 5.
:)
Your dd will reach her potential - because she has you for a mother x

NourishingButtons · 11/06/2013 15:29

What a beautiful thing for your gp to say Badvoc x

Badvoc · 11/06/2013 15:34

Yes.
I think it's probably the nicest thing anyone has ever said to me!

Pouncer1 · 11/06/2013 16:49

Some days are so hard and I think the uncertainty of not knowing is the worst.

You sound like a brilliant Mum. Big hugs.

armani · 11/06/2013 17:53

Thank you everyone for your kind words. Just to clarify - LEA haven't agreed to assess, the school have ref to EP.

We have an appt with peads at the beginning of next month, as OT felt that from the results of her assessments and the physio assessments dd should be seen earlier than the four months the pead initially wanted to review.

Badvoc what signs did your ds have? I have never heard of anyone else being investigated for possible cp so old. Dd is also 7 and I feel like I should have spotted something was wrong before now :(

Thank you so much for all of your lovely words.

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Badvoc · 11/06/2013 18:30

He was an undx iugr baby and had lots of health issues from birth.
We lived away at the time and were not at the gp practice that we are now.
He had prolonged jaundice (which can cause brain damage) and was a query cp dx as a neonate. The care he got was truly diabolical :(
We were told, variously, one week that he might be blind, the next week that he might be deaf and the week after that he had cysts on his brain.
It was a very difficult time.
He was 4.15oz at term.
He had major feeding problems.
He was floppy and missed many of his milestones. For example, he did not sit up unaided until he was nearly 10 months old.
His sen became more apparent once formal education started in year 1.
It's been a long and distressing road for us, but he is doing well now.
We have done rrt and ait and are currently almost at the end of the tinsley house programme.
They have all helped ds very much.
I didn't even bother going down the SA route.
I knew it was pointless for us. Ds had issues, but it was made very clear that he needs were nit considered as important as other children with more complex needs.
It's all about the money ime.
Ds is 10 this week :) and will be leaving year 5 academically exactly where he should be which would have been unthinkable to me 2 years ago.
If you would like any more info or to discuss your dd, please feel free to pm me x

Badvoc · 11/06/2013 18:31

Sorry= iugr = intra uterine growth restriction/retardation.
He basically stopped growing at approx 33 weeks :(

Badvoc · 11/06/2013 18:34

Oh, and we paid an EP as school point black refused even though paed asked for it.
Didn't tell me anything I didn't already know tbh..ds was severely dyslexic and had some spld.
Waste of time and money in our case.

armani · 11/06/2013 21:50

Thank you for sharing that with me badvoc, you and your ds have certainly been through alot! Your ds sounds like an absolute credit to you :)

My dd was born overdue, normal birthweight, normal apgar etc. She was very hardwork as a baby, constantly cried and was a very slow feeder, fed slowly and as a result constantly day and night. She didn't suck well, would constantly drop her dummy, up to a point where I would be up in the night up to 20 times putting her dummy back in.

She reached her milestones although never crawled using all fours, she only ever cammando crawled, she would also only kneel not sit.

Like your ds her sen only became apparent in year one. Dd has dx phonological disorder, global learning difficulties, severely delayed fine and gross motor skills, delayed visual perception, bone deformation in her left tibia, shortening of left leg, increased tone in both legs plus possible adhd and sensory issues.

All of the above has only been confirmed in the last year and its come as a huge shock to me. Now dd is getting older it is becoming increasingly obvious how different she it to her Peers :( her movement is generally very lose and she is always on the go and making strange noises. I literally have to watch her like a hawk.

OT and pead have both recommended SA although school disagree and say they are meeting her needs, although she is working at p levels and has made limited progress. She isn't receiving any salt, OT or physio.

Her needs are clearly complex, salt keep discharging her as she can't engage in the therapy due to her attention problems, although school claim she doesn't have any attention problems. I just hope the EP can provide some guidance that the school will act on.

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Badvoc · 11/06/2013 21:56

I am sorry to hear that Armani.
I don't want to be the voice of doom here but don't hold your breath for the EP report to change anything :(
I would urge you to check out rrt = retained reflex therapy.
I went to INPP in Chester, but there are others around the UK.
If you go to www.inpp.co.uk you can fill in an online questionaire which may indicate whether they could help your dd with her gross and fine motor skills, spld and delay.
My son couldn't ride his bike, swim or use his scooter before we went. He was a very anxious and het up little boy.
Within 2 months he could do all 3 and his anxiety levels had reduced.
His gross and fine motor skills improved immensely.
X

Badvoc · 11/06/2013 21:57

...and it is very very common for a child's problems to only become apparent/obvious in year 1.
You hear it all the time on the sen/sn/primary education threads.
So dont beat yourself up about it, ok?

armani · 11/06/2013 22:00

Thanks badvoc, I will look into rrt, this is the first I've heard of it. Can I ask what spld means? Sorry I'm not used to all the abbreviations yet Blush
Dd can't yet swim, ride a bike etc so it looks promising, thanks x

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Badvoc · 11/06/2013 22:05

I heard about it from MN :)
It means specific learning disability.
My son is now off the sen register (had been in it from start of year 1) and is working at level 4s across the board :)
2 years ago he was level 1s.
I was also told everything you have been told...making adequate progress, even though he demonstrably wasnt!
Something someone wrote on one of the sen threads really stuck with me and I will share it with you now....
You are your child's best and sometimes only advocate
It took me far too long to understand and accept that.

armani · 11/06/2013 22:14

Thanks :)
Yes I am beginning to realise I am her only advocate, school clearly couldn't give a damn :( they have tried pulling all sorts of tricks out of the bag since I've applied for SA. Suddenly she is now making adequate progress, despite being graded at a level 1 last year and a p7 now.
I was told it would take at least 6 months to get an EP in, within a week of me applying for SA I have an appt with one!
They have even suggested OT and pead aren't qualified to recommend 1:1 support at school as they haven't observed her in her educational setting :(

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