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SN children

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

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Original poster

Are we doing enough for dd?

18 replies

Caroline5 · 25/09/2004 19:01

I often wonder if we are doing enough for dd2. My Mum has just told me today that I am too accepting of dd's problems and should ask for a referral somewhere else for a second opinion to see if they can come up with a diagnosis. Does anyone think this is right, I don't want to annoy our local NHS team as they are pretty good I feel.

Also we only really do physio at home with dd, otherwise, as we no longer have portage, we don't have any set program of activities to do with her and just play with her as normal. For instance, should we be trying some form of speech therapy (she is 3 and barely makes any sounds and little obvious understanding) or PECS? I guess I should speak to her school about all this, but feel a bit in the dark and inadequate! Everyone else here seems to be so proactive doing lots of home therapy, but I'm just not sure what we should be doing...

OP posts:

Berrie · 25/09/2004 20:04

What stops you from trying?

RexandBen · 25/09/2004 20:08

Hi,

what specifically are your daughters problems? what did the paediatrician say?

Dingle · 25/09/2004 20:13

I am one of the world greatest for running myself down ,always thinking I should know more, be doing more.
Sorry, I am unaware of your situation but why is your dd not still getting Portage if she is only 3? Why is no SALT in place, or at least have given you a program to work with. (for what that is worth,sore point!!)

Original poster

Caroline5 · 25/09/2004 20:40

Berrie - it is not for lack of trying, it's a lack of really knowing where to start.

I think seeing my Mum always gets me down as she always makes a huge thing about how very disabled dd is, and how she probably won't advance much more than where she is now.

As background, she is 3 and a quarter, can sit and commando crawl maybe a foot but not stand or walk, makes very few sounds and cannot talk or do any signs, has very limited understanding (cannot wave hello/bye or follow any simple command e.g. 'clap'). No one is sure whether she will ever walk/talk. We have no diagnosis, other than microcephaly (unusually small head).

Sorry, this wasn't meant to turn into a long moan, was just feeling a bit down and wondering what more we could do to help her. Her problems seem so great, I almost feel there is nothing I could do to help her. I haven't pushed the Speech Therapy as I guess I have just felt it is too advanced for her, although apparently she has been seeing a SALT at her school from this term. (We don't get Portage any more as she attends a special school nursery for 2.5 days a week, so she is not eligible).

Sorry for posting this thread as it is just too whingy! (must be PMT ).

OP posts:

tamum · 25/09/2004 20:52

Blimey Caroline5, not in the least bit whingy! It sounds as though you're being left alone far too much. I am absolutely no expert at all, but I would have thought that the head of your dd's school might be a reasonable person to talk to. They would presumably have experience of what help other children at the school/in your region get. I don't honestly know whether a more specific diagnosis would help in terms of therapy, but at the very least it would let you tap into parents' support groups and networks. Have they ruled out Rett yet? Please tell me you're not still waiting for an answer....

Original poster

Caroline5 · 25/09/2004 21:10

Yes they are 80% sure it is not Rett syndrome, although she still seems to me to fit quite a lot of the characteristics. Apparently the test is not totally accurate.

On the plus side, she is generally quite cheerful, seems to have a sense of humour and sleeps well on the whole

OP posts:

tamum · 25/09/2004 21:13

Yes, they've found mutations in the Mecp2 gene in 80% of Rett cases, so that's probably where the figure came from. They think that the remaining 20% are probably in other regions that affect the expression of the same gene, but then you're in needle-in-a-haystack territory. I was just thinking how good the support groups are for Rett. It's great that she's happy though, bless her.

Jimjams · 25/09/2004 21:14

HI Caroline

Well first thing is that it is INCREDIBLY difficult to do any sort of intervention without support from somewhere. Secondly trying to get services from the NHS etc is like banging your head against a brick wall.

Something like PECS could be a possibbility. In your shoes I would ring pyramid and have a chat. They claim to be approachable (and were on the course). They have lots of experience of setting up PECS with children with cerebral palsy etc. They would be able to tell you if tehy could help, and the best way to do it (and the cost- for example they could come to your home/dd's school- but could cost too much so they may recommend the regular course!)

Another alternative would be someone like BIBIC Again just for a chat to begin with. They let you fundraise for your child (and will help you) so you can do it for free.

There will be other similar places out there worth talking to. (cerebra possibly??? don't know much about them...)

I think trying to do stuff without ongoing support is incredibly incredibly difficult. I've never managed it!

Christie · 25/09/2004 21:14

This reply has been deleted

Message withdrawn at poster's request.

Jimjams · 25/09/2004 21:16

only mentioned the CP wrt PECS to show that they have experience of adapting the basic system so that it works for children with mobility difficulties.

Original poster

Caroline5 · 25/09/2004 21:41

Thanks tamum - didn't know where the 80% came from and now all is clear!

Jimjams - thanks for those websites. Had wondered about BIBIC after reading about your visit there, must give them a ring. I really do feel I need to do more with dd and maybe that is the place to start. As you say, it feels nigh on impossible without any support.

christie - hi, I'm very happy with dd's school and her teacher, but could do with more practical feedback (other than "she was very happy today" ). We do get physio exercises to do but nothing else. Portage really was excellent so suppose I am feeling the loss of that. We are due a review with her teacher quite soon I think.

OP posts:

coppertop · 25/09/2004 21:43

We only really did therapy (SALT/OT) where we had outside support. The SALT gave us the exercises to do between appointments and our portage worker helped us with ideas for OT. Otherwise tbh I probably wouldn't have had a clue what to do.

I think it would be a good idea to talk it through with the school. It helps to get an outside view of things and they may have some good suggestions.

Jimjams · 25/09/2004 21:44

BIBIC use PECS as well- so would be able to give you an indicationof whether they would be suitable for your dd. If you do go- ask to book in at a time when the attached SALT is available- it doesn't cost any more for her assessment and sounds as if it would be useful for you.

Fran1 · 25/09/2004 21:45

Take a look at www.carers.org and click on find your local organisation (top left side of page).

If you have an organisation in your area, it could be worth contacting them. They will know what services you are entitled to in your area, help you to access them, and can also assist with other things such as DLA forms and other appropriate benefits.

Saker · 26/09/2004 21:57

I have been reading a book which I have found quite helpful because it sets out different areas of development and suggests games and exercises you can do in each. It is specifically aimed at preschool children and I have found it helpful in organising my ideas about what to do with my son who has some speech and motor delays. The author's son is autistic but the book is supposed to cover all areas of special needs and was started before the author had a diagnosis for her son. It also has a short section on your rights, statementing etc.

It is called "Small Steps Forward: Using Games and Activities to help your pre-school child with Special Needs" by Sarah Newman.
here

You might find it useful.

fio2 · 27/09/2004 08:30

caroline, how many days does dd go to school now? I only ask because we get no intervention at home because dd gets all her therapies at school (like she did when she went to the sn nursery) If I was yoy i would just ask the school to provide you with her physio program and SALT program, i would assume she has one for school.

I am sure you are doing everything possible for her, i really am. You and your husband sound fab with your girls, so dont worry. i sometimes feel like we are not doing enough 'therpies' with dd at a weekend, but to be quite honest i think she needs a bit of 'normal' time to, without being pushed all the time. plus she is usually just knackered at the weekend.

As for the Retts thing, we were told the same, only had it ruled out a few months ago even though the test was negative when she was 2 yrs old. It was very hard not knowing either way, but I was thinking about it yesterday and even if its the result you dont want to hear it would be better knowing and dealing with it. Not that I am saying your dd has Retts. i am sure the consultant will say either way if he still thought it was. I am waffling now, i hope you know what i mean! As you know I am DESPERATE for a diagnosis, being a complete control freak

Original poster

Caroline5 · 27/09/2004 16:47

Hi fio, I was feeling miserable on Sat night and posted this and now feel a bit of an idiot! Still, there is some validity in it as I do wish I had some idea of what to do with dd at home and have had some great ideas here - thanks for the websites and book suggestions, saker and fran, will have a look.

dd goes to school 2.5 days a week, so she does do all her therapies at school. I feel a bit cut off from it all now, especially with working as I don't get much chance to see her teacher. Next time I see her, I will definitely ask for a home programme, although feel bad giving them even more work!

Hope you and your family are all OK

OP posts:

maddiemo · 27/09/2004 17:34

Caroline5 We have also been to BIBIC. They give you a programme to follow at home. Something like that could help to make you feel more involved with therapies.

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