So worried and feel so alone... don't know what to do next

[Mollydolly]

DD2 was, following a major struggle to DH, parents and any health professional to beleive me, diagnosed with CP - mild right hemiplegia in September. She is now 16 months and I am completely out of my min with worry as I now think she may be displaying autistic traits. The trouble is again nobody will take me seriously, not DH, not the paediatrician who we see for her CP - nobody. I did mention to the portage worker that I had concerns but she was (not surpisingly) non-committal, however, she has told me to mention it again. A description of dd2 is as follows
What she doesn?t do
1.Doesn?t point to share or show something to others
2.Tunes out sometimes ? e.g. when going outside seems to stare and not be able to hear me
3.Doesn?t seem to be able to communicate wants or needs with others e.g. if she is thirsty, tries really hard to get juice herself, even if its out of her reach.
4.Doesn?t bring anything to me to ?show? me what she?s got
5.Doesn?t initiate play with me
6.Doesn?t hold arms out to be picked up unless I do it first
7.Doesn?t have many words ? has never attempted ?mummy?
8.Does not understand toy telephone ? putting it to her ear.
9.Used to wave ?good bye? but only does it occasionally now.

What she does do
1.Good eye contact most of the time
2.Responds to her name most of the time
3.If I say ?Ready?.? She will finish with ??steady, go!? and will attempt ??. .two, three!? If you say ?one?.
4.If you hold your hand out and ask her to do ?garden?, she will touch your hand and try to do round and round the garden and will also point to her toes if you say ?do piggies?.
5.If you say ?where are your shoes?? she will pick up her feet.
6.If asked ?what does the doggy say?? she responds with ?woof, woof?.
7.Will play catch with her sister and us and understands to throw the ball in turns
8.Will give you something if you hold out your hand and say ?ta? or ?give it to mummy?
9.Loves to play hide and seek and will pop up at her sister from behind the settee without initiation.
10.If asked ?give dd1 a love? will hug her sister and say ?aahh?
11.Will pretend to tickle herself and say ?ticka, ticka ticka?
12.If you show her, she will attempt to ?stir? with a spoon in a bowl and then vaguely put the spoon to her dolly?s/other persons face (not really the mouth).
13.If you reward something she does with ?Hooray!? and clapping, she will hooray and clap too.
14.Loves watching other children and tries to join in sometimes.
15.When you put her coat on she says ?tats? as in ?are we going tats??

Sorry for going on but just don't know where to turn - not eating, not sleeping, and not getting any support. Just want to do whats best for my lovely girl but feel that this might be missed and it may not be the best thing for her. Can anyone offer any advice or help? I have thought about going to my GP but don't want happy pills, thought I might be able to get a referral for counselling - just don't know what to do next....

Hope you are feeling less stressed now and are eating and sleeping better. You will find that parents of children with a special need are the expert in their child and their condition (hopefully all professionals recognise this). I echo what is said about looking at the 'can do's' as there are far too many people out there (not parents usually) who will focus on the 'can't do'. Keep playing with and enjoying your children and keep fighting for what you know is right. Don't forget to take care of yourself and your relationship though. Its so important that you both feel supported.

Socci, if Im derogatory about any alternative therapies theres a risk that half of MN will come down heavy on me! However there are some therapies that some people will swear by, but some people have had problems after.

eg patterning (I think BIBIC use this still?) I have seen children develop postural deformities after courses of this because the parents were encouraged to stop using their seating, standing frames etc. It also puts huge pressure on families (some break up) because of the amount of time and effort needed. IME if you put loads of time into any treatment you will see results - but you also risk breaking up your family and having a breakdown. If at all possible, any therapy should be integrated into everyday life, and made as fun as possible.

Hyperbaric oxygen therapy used to be popular with SCOPE, but apparently there is a risk of damage to developing eyes.

I cant think of any really harmful ones right now, but its worth investigating what is available on the NHS before spending money on something that may not be right for your child.

Molly - your daughter sounds very sociable and engaging! What ws it that made you think she had ASD?

fubsy - I think the lack of pointing is the thing I have focussed on for some time now - have read so much about the importance attached to it (even when all other signs are good IYSWIM)

Also, my god daughter who is only 12 mths next week has been doing it for some time, however she did walk at 9 months and seems incredibly advanced. I hate myself for doing the comparison thing, particularly when I know that dd2 has CP, but can't seem to help it. That said, i wasn't aware that the CP in itself may/could be responsible for slower development - had I known that I may not have worried/expected so much. I dunno, just worry that we have got our heads round CP that now she may have something else to contend with - want whats best for her I suppose.

sorry didn't make myself clear in last post - knew that CP would mean slower development for motor skills such as walking etc and use of right side generally, but didn't know it could cause generally slower development globally (hope that makes sense)

mollydolly
cp can cause global devlopemant delay
It is quite usual(talking from my own expierence and realise no 2 children are the same)to develope at a much slower pace.
normal for them to not do thinks like "telephone"
Sounds like you really need to speak to someone face to face(i faound this REALLY) helped.
what area do you live in?

2shoes - I live just outside Blackpool - anyone else close?

I defo could do with meeting up with someone who has experience of our situation.

2shoes - I live just outside Blackpool - anyone else close?

I defo could do with meeting up with someone who has experience of our situation

Molly - if there's no-one on MN who lives near you, try contacting an organisation called HemiHelp. (www.hemihelp.org.uk) They do a newsletter and lots of leaflets and are definitely worth contacting.

Fubsy - thanks, will do. Did you see my post in answer to your question re what made me thin dd2 had ASD?

Fubsy - thanks, will do. Did you see my post in answer to your question re what made me thin dd2 had ASD?

Mollydolly

So sorry to hear about all your struggles. I had a similar concern as my ds was not pointing at all at 15m. Like you I have scoured the internet, never know if thats good or bad! I mentioned it to my HV who said he should be pointing but to give him until he was 18m to see what happens. He had very little speech but otherwise there were no real concerns. He had a hearing test which was OK and the HV arranged to come and see him at 18m. He started pointing but with his whole hand (that worried me even more)at 16m but now at 18m his pointing is very much in place, with his finger and using it to get things or point out things of interest and he also follows my point which he wasn't doing at 15m either. Same as you I have friends with much younger babies who are all pointing like mad so I was worried sick. His speech is also coming along with lots of new words although very few people except those close to him can tell what they are but he is trying!

Just really wanted to let you know that there are some late pointers out there amongst us so hopefully your DD is just one of them. She has lots of other things to cope with also. My DS also mimics like mad and I had found out that was a farily good sign. One book I did get which I think has helped is called Baby Talk. When I read it I realised how much I either wasn't talking to him or I was questioning him all the time - probably testing him to see if he could do stuff that I thought he should be. I have stepped right back from the 'testing' him and I am sure that has helped with his development. My HV came to my house to see him and she didn't have any worries. Have you got a HV that could maybe do that? It was really interesting actually as she said that I anticipated a lot for him, ie getting toys for him that he wanted and giving him stuff before he had a chance to point for it. He also has a rather bossy sister who doesn't always give him a chance to express himself, she made me see the bigger picture and I feel more relaxed now - does anyone ever stop worrying though?! They change so quickly at this age hopefully she will begin to do some things that will put your mind at rest.

Wags - dd2 is 16months next week and funnily enough I'm sure she pointed with her whole hand at a picture of herself on the wall last night - I was almost dancing round the room and then convinced myself I'd imagined it!! How mad is that!? And what you say about the questions and getting everything for her rings so true - I hadn't realised. I am going to go on Amazon and look for the Baby Talk book too - it sounds interesting. Thanks for sharing - it makes me feel so much better to think that I MAY be worrying a little too soon

Molly - What Wags says makes a lot of sense. Also remember that there are loads of milestones that the books say kids are supposed to achieve at certain times - in reality there is a lot of variation around these times. If a child hasnt achieved one milestone but is doing lots of other things, then it usually isnt something to worry about. I remember getting all hot and bothered because my daughter didnt roll - turned out she had better things to do! Pointing is important, but so is joint attention, which you have described your daughter as having.

Anyway, sounds like she is trying to point know, which is brilliant! Keep up the good work, youve made so many lovely observations about your daughter, and you have been given some good advice on this thread.

Mollydolly

Your DD sounds fab, she really does

Have been through very similar feelings to those you describe, tears, sleepless nights, constant worry and feeling of sickness at the thought that there could be something else 'wrong'.

But... my DS (26 months now) sounded much like your DD at the same age and I was sooo stressed about his not pointing. Then he started whole hand pointing at about 16/17 months but by 18 months he was index pointing like he'd always done it - amazing! They really can just click sometimes.

He also has other birth related issues - not formally DX as CP but has extreme low tone and hypermobility in both legs attributed to oxygen starvation at birth, but apparently it's not CP. And he gets lots of help with that from physio and is making great leaps.

I guess what I'm trying to say is that you do get to a point of acceptance and the constant nagging fear ebbs away as things fall into place - and I think there are so many good things that your DD is doing, you have lots to be proud of and so many positives in there - I hope you can see them.

I also have to echo what Charleypops said - I wish wish wish that I had spent less time focusssing on the what's and maybe's but I also know 'tis easier said than done. Hindsight is such a wondeful thing