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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Let's have some shiny happy thoughts! Can you think of anyone who...

21 replies

twoisplenty · 04/05/2007 10:23

is a real fairy godmother in your life, you know, someone who really helps your sn child, or yourself? I'll start you off...

My ds (8yo) escort, who takes him to/from school each day is wonderful. She is a real grandmother figure who loves him and helps me get him to the car in the morning.

She remembers his birthday and Christmas, and buys for BOTH my chiildren.

She rings to see how his appointments went, and if he is poorly, she rings to see if he is better.

Anyone got fairy grandmother figures in their lives?

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coppertop · 04/05/2007 10:50

Ds2's portage worker.

If ds2 has IEP meetings on her day off she still attends. When it was ds2's case conference she offered to look after him so that both dh and I could go - again on her day off. She goes out of her way to track down things ds2 needs and also brings me copies of interesting articles and research that she's found. When things go horribly wrong she's just on the other end of the phone. She rings around for us and liases with everyone so that we don't have to spend ages on the phone or writing letters. She's lovely.

Original poster

twoisplenty · 04/05/2007 11:29

Wow!

Anyone else?

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2shoes · 04/05/2007 11:50

Maggie
she works at dd's school and has been her friend for about 9yrs. When dd's friend died. Maggie was there for her.
When dd was rushed into hospital . Maggie phoned.
maggie is just wonderful

AttilaTheMeerkat · 04/05/2007 11:57

Unfortunately these people don't figure much in DS's life any more but they really helped him in the past, not just to say myself:-

his LSAs in infants who performed above and beyond their call of duty
our original Health visitor aka National Treasure

sphil · 04/05/2007 12:23

In our old house:
Our HV - so helpful and supportive (despite going p/t during time we knew her). She has an adult son with SN, so knows the ropes.
DS2's 1: 1 at nursery - just because she loves him!

Here:
DS2's Headteacher-to-be (in Sept) - couldn't have been more welcoming and has given me loads of useful info already.

My Mum - doing sterling work on DS2's home programme, which is really paying off in terms of his progress.

Old friends of ours, who offered to give us money to help fund the home programme and who absolutely refused to take no for an answer.

Makes me realise how lucky I am - good thread, thanks!

eidsvold · 05/05/2007 11:01

our surrogate grandparents for the dds - although my mum is here she still works full time and so we don't see much of her. We have family friends who are the same age as my mum and they are fabulous. As my dad lives some distance the husband is the closest thing to a grandfather the dds have. They adore dd1 and are brilliant with her.

lourobert · 08/05/2007 18:13

What a lovely thread

I think i would have to say my sons portage worker- i find myself looking forward to her visits and my son reponds to her so well.

and I would also say my sons fairy godfather would be his neurologist. He s the loveiest down to earth man you will ever met. At our appt the other day my son wasnt quite himself and didnt want to sit on my lap but lay on the floor. after 10 mins f me trying to calm him enough to sit still I let him lay down and the neuro laid down on the floor next to him- then as my son started to roll so did he. He cuddled me ds for ages at one point just talking to him etc. It was nice to see a neuro who didnt mind getting his posh suit dirty.

He also emails me articles and things that he knows id find interesting....!!

Original poster

twoisplenty · 08/05/2007 20:24

lourobert, my eyebrows were raised in awe of a specialist lying on the floor! Wonderful. My ds had a special sort of eye appointment recently, and the optometrist also got on the floor to do some tests on my ds reflexes!! Although my ds thought he was a bit strange, no other professional has ever done that sort of thing!

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Pixel · 08/05/2007 20:37

Absolutely anyone involved with ds's school or the taxi service. Also my old HV although we don't see her now, she was still wonderful.

Having read various threads on here about what some of you have to put up with I know I'm very lucky with my friends who all accept and love ds and go out of their way to include him in things as far as possible. I know some of you have lost friendships due to the realities of having children with SN so I do thank my lucky stars for my great friends. Oh and most of my family aren't too bad either .

lourobert · 08/05/2007 20:57

twoisplenty- i was in awe too esp as most of the professionals weve come into contact with since my sons dx have been not particularly 'nice', theyve been very good doctors but didnt have that personal touch.

saucisse · 08/05/2007 21:42

My dd's paediatric neurologist. He was an absolute gem (he dies last Oct suddenly ).
His empathy and kindness made a very difficult journey with dd much easier.

saucisse · 08/05/2007 21:42

that's 'died'

nightcat · 11/05/2007 10:49

our pediatrician (NW Surrey) and our neurologist (Sheffield) - both worth their weight in gold

ShinyHappyPeopleHoldingHands · 11/05/2007 10:54

Well you can have a ShinyHappy person! [waves shinily (?!) and happily!]

I would have to nominate DS's respite carer Dot. Ok so it's her job.. but she is bloody lovely with it and does much more than is merely the call of duty. For instance, when children start going for regular overnight respite at her house, she buys them a duvet set with something they like on it... her family are always taking the respite kids out to McDonalds, bowling, trips etc.. and she has a disabled teenager of her own plus one long term fostered teenager!

(She has two other teenage kids of her own too!)

The woman is a saint.. and it was worth the long wait and fight with social services to get respite, just to get her.

Woooozle100 · 11/05/2007 11:50

Have met so many lovely people through dd and the various groups / therapy & support stuff it would be hard to single people out. Everyone at KIDS, Conductive Ed, her support worker, her general paed.. so many people who you can see aren't just doing their job but give so much more.

Pff - unlike me who's not even doing my job but rsing about on here

Original poster

twoisplenty · 11/05/2007 11:53

Oh oh oh!! ejb - my ds does conductive ed!! Don't really know of anyone who does it (except for Ds schoolmates of course!) Is your dd school-age yet, is she at a sn conductive school? Very interested!!

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Woooozle100 · 11/05/2007 12:16

twoisplenty - dd is only 2 so we just go to parent and child sessions twice a week. She was about 8 months when we started going (1 to 1 sessions / play suggestions) and has been in the group since oct 06.

Its fab! DD has made much progress since starting the groups (she wouldn't even put feet flat on the floor before and is now standing holding on to something for short periods) I know an older child who is at the school (is getting on grand)and all the kids put on a play at xmas which was great to see.

Dunno whether dd will go to school there yet. Her parent and child place is funded till her 4th birthday. She'll be going until then deffo.

How's yr ds getting on? Where abouts in the country are you (hey if you've waited aaaaggees for some twit to do the panto video yr prolly at the same school as us!)

ShinyHappyPeopleHoldingHands · 11/05/2007 15:18

My DS used to do conductive education too. First at Rainbow House, Chorley and then when we moved down South, at the CP Care Centre, Cliffe Woods. We tried to keep it going until he was five but once he started school the routine became unmanageable. I know how much he benefited from it though and his pic is all over their promotional leaflets

Original poster

twoisplenty · 11/05/2007 15:29

My ds did conductive parent and child sessions called "School for Parents" twice per week, then we discovered a conductive school, one of only about 5 in the country that are LEA schools, so managed to get a place when ds was 3yo. Now he's 8yo and will leave when he's 11. It's fantastic because he gets loads of physio all day with classes that are at his level (learning problems) and the school is very supportive. Couldn't wish for better.

The school for parents were very good for me to learn and have support, and very good for ds because he progressed really well. I don't think I would have stayed sane without them tbh.

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delllie · 11/05/2007 17:01

My DD's nursery teacher who she has had for the last 2 years, she is a real angel sent from above!!. She is so passionate about the children she looks after and is so caring and patient. She has been paramount in helping up to 'fight' for more help with DD's feeding (she has complex feeding problems) after we were told that the feeding problems were part of DD and we had to put up with them . She accompanied us to DD's next appointment and now something is finally being done!! She also came with us to look at new schools for DD (she has to move in September ) and has helped us choose the best school. I am gutted that DD has to move on, I wish she could stop with the teacher forever.

mymatemax · 12/05/2007 22:07

Got to be without doubt my sister, She really is the best auntie & sister.
She was there at the birth of ds1 & shortly after ds2 was born & spent many a night in SCBU with me when dh was at home with ds1.
She seems to have a 6th sense when it comes to ds2's appointments & will just turn up on my doorstep & say "thought you might like some company today" we've shed lots of tears together & laughed together.
She always gets the best out of ds2 & treats both my boys as equals they go mad with excitement when she walks through the door, I could go on & on.... She is just fantastic!

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