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

39 replies

Mollydolly · 16/10/2006 16:34

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....

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lulumama · 16/10/2006 16:47

bump


for someone else ...no experience of this but i'm sure someone will be along soon...

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diNOLOOKINGOVERYOURSHOULDERsau · 16/10/2006 16:48

mollydolly, I've got all these worries about DS3 (aged 2.2) who also doesn't do all the things your dd2 doesn't do. However lots of people have been trying to calm me down about him. (My DS1 has a diagnosis of high-functioning autism, he's seven now, but doing very well in mainstream and most people wouldn't guess he had any special needs.)

So I wouldn't at all dismiss your concerns. But having said that, she is still quite young, at 16 months. Does anywhere near you teach baby-signing? I've been told that it's a really good way of enouraging communication with babies and toddlers, whether they have special needs or not. I am going look into it for DS3.

I do understand your worries though, it's horrible.

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Blossomhowl · 16/10/2006 16:51

Do you think some of her asd traits could be connected with her cp?

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lori21 · 16/10/2006 16:53

Just wanted to give my support. It sounds like you are doing a fantastic job and working really hard for your little girl. I am sure the portage worker has worked with children with ASD so the support she is giving to you and your little one will be the best for your little one regardless of any diagnosis. Have you looked into support groups for parents with children with special needs they may be able to reassure you or advice you. Counselling sounds a good idea, having to fight to get a diagnosis then coping with the diagnosis when it comes is tough so you deserve to have someone to listen to you. Professionals are often very wary of diagnosising Autism as many of the characteristics are similar in other special needs as well. It is important though that you get all the help and support you need so often this involves fighting.

The government has a website which maybe useful see here

Good luck and keep posting

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sorrell · 16/10/2006 17:05

She sounds a bright little button! And fiercely independent which may be a very good thing long term - if horribly frustrating for you short-term. One of my children is on the austistic spectrum and he is very high functioning indeed and he very rarely tried to join in with other children. It's hard as your dd is so young and because of her cp to know what is going on. how does her cp affect her physically and mentally? I mean, could not pointing etc have a physical cause or be part of a wider delay, though I have to say, she doesn't sound delayed to me.

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aaronsbefuddledmummy · 16/10/2006 17:26

My dd is the same age and doesnt do/say nearly as much as yours. I also have the constant worry that she will have asd like her brother, your lo mostly sounds fine to me but worth keeping an eye on her. Could you perhaps mention it to your hv - mine is fantastic

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charleypopspreviouslyntt · 16/10/2006 19:12

Hi Mollydolly,

I wrote a similar post to yours last year. I wrote a list of what my ds does and doesn't do too. My 16 month old boy has dystonic cp which affects his whole body. I wrote the post before we had the dx at 7 months. I too couldn't sleep or eat and felt sick with fear the whole time.

My ds only does numbers 1 and 2 on your list of what your dd does do and is just about the same as on your "doesn't do" list. Funnily enough, ds started to wave a few months ago, then stopped for 2 or 3 weeks, and now does it again!

You'll probably find that your dd is pointing, but using her eyes (it's called eye-pointing).

She sounds absolutely fine to me, her motor abilities are bound to be a bit hit or miss because of the cp and motor abilities don't really have any bearing on cognition. My son's motor abilities are far more involved than your dd's and he has no words whatsoever and I'm still being told there's no need to worry about his cognition. Of course I do worry, I can't help it, so I understand completely what's going through your mind. Maybe you should give the Scope helpline a ring - go to www.scope.org.uk x

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Mollydolly · 17/10/2006 08:33

Thanks everyone. Her CP is right sided so generally her right arm and leg are weaker and she has slightly limited use of both. She has started walking in the last month so a lot of her energies are going into keeping her balance e.g. she holds her right arm up at a funny angle and stiff IYSWIM as she is struggling with balance whilst walking - so this may have something to do with the CP. It is so frustrating and upsetting when nobody will take my concerns seriously - when I mentioned it to the paed we see for the CP he said he "had colleagues that showed more autistic traits than she did" and said with CP sometimes subtle learning difficulties become apparent at a later stage. whilst this seemed to reassure my dh I just felt that he hadn't taken what I'd said seriously. trouble is, I'm now starting to think that it is my paranoia and possible stress related state of mind that is causing these worries, and I'm imagining things - it really is having a detrimental effect on the family and I don't want it to take over our lives IYKWIM. After reading the messages though, she does seem to "share" with her eyes - she looks at something interesting and then looks at me and smiles - is that joint interest?? Not sure of anything anymore.
Dino - tahnks, will defo look into baby signing - it could be ggod for me to feel I am "doing" something for her.

charleypop-thanks for the post - it is good to share with others in a similiar position.
blossom - not sure whether the ASD traits are linked to CP - maybe someone else knows whether it can be?

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charleypopspreviouslyntt · 17/10/2006 09:58

Sorry but lol at your paed saying he had ".. colleagues that showed more autistic traits than she did" that did make me smile! I'm sure he totally believes there's nothing to worry about in that department.

I know where you're at. Once you've had your instinct and suspicions finally confirmed after not being taken seriously by anyone for what seems like such a long time it's difficult to believe any assurances any professionals try to give you.

You're still reeling from the shock of an actual diagnosis (when you were desperately hoping you're instincts were wrong).

You're new to sn so you're probably going crazy looking stuff up on the internet, finding out about all possible implications of insults to the brain, visiting boards with postings by mums with kids of with kinds of different sn and because you're so raw you're incredibly hypersensitive and scaring yourself silly at every minute opportunity. (I went through the "is he autistic?" phase myself).

Your brain will wear itself out soon and you'll calm down, honestly, you've just got to ride this phase out. I'm not going to say enjoy your baby because that used to pee me off so much in the early days, however you will look back at this time (and they're at such a lovely age) and regret that you didn't x

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SparklyGothKat · 17/10/2006 10:04

Hi, I know how you feel. I struggled to get a Dx for my DS who was finally diagnosed with CP at the age of 2 1/2 years. He does display some ASD traits, but many children with brain damage do. My dd1 is 6 and was diagnosed with CP at 13 months old, and we have only just got a diagnosis of ADHD for her last month, as noone believed me.
Its a struggle, and you are very new to the world of SN, but it does get easier.

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Mollydolly · 17/10/2006 11:43

charleypops - when did you get into my head!!?? Crikey, you have just described me to a T! DH and best friend tell me to stay off the net (not mn of course) as I'll scare myself S***ss and they and you are probably right. You say you went through the "autistic" phase too - do you still worry? What do the health profs say to you about it? You're right of course, I defo don't want to miss out on any part of her growing up.

Sparkly - Thanks for telling me it gets easier - lights at ends of tunnels seem very scarce these days - I wasn't aware that children with brain damage could display ASD traits - does this mean that they have ASD or that the brain damage shows itself in a similiar way to ASD? Sorry if I'm prying or questioning too much.

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fubsy · 17/10/2006 11:54

Mollydolly your daughter sounds lovely, and she is doing some really appropriate things for a 16 month old. The smiling and looking at you definitely sounds like joint attention. Remember that if she has a right sided hemiplegia and was going to be naturally right handed, than she will have to learn to use her left hand for the things she would have domne with her right, so I am not that surprised if she isnt pointing. Toy telephone - does it look like your phone? If not, then quite natural that she doesnt put it to her ear.

Do you see a physio and/or an occupational therapist? If not, ask for a referral straight away, as they will be able to advise on development. Portage is a great scheme but it is based on some quite rigid checklists that were originally devised for use with children with learning difficulties and developmental delay without altered muscle tone as found in cerebral palsy. SCOPE can be helpful, as can an organisation called Cerebra. But beware of seeking lots of alternative therapies - there are endless ones and some can be positively harmful for some children. Stick with Portage, physio and OT for now - they are usually used to working closely together with preschool children.

Good luck, and please enjoy your daughter and her achievements!

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Mollydolly · 17/10/2006 12:02

Fubsy - Thanks for your advice. The telephone thing - she doesn't put our phone to her ear, she prefers to push the buttoms for the beeps they make, although she did put our phone to my ear after I did the other day! Could have been simply copying but I am on it a lot!! We see the physio and OC every three months and they are delighted with her progress.

A good point well made re her maybe being right handed - never really thought of that. DH thinks she is so busy with mastering the movement things like walking and going upstairs every 5 minutes if we let her that she is putting all her efforts in to that for now and forgetting the other things.

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sorrell · 17/10/2006 12:11

There is no such thing as 'just' copying!! Copying is absolutely vital to learning and is one of the key things that children on the autistic spectrum either just don't do or do much less of than other children. Copying is great
Smiling and looking at an object and then at you is joint attention and pointing. If she is naturally right handed and has a weakness there then of course pointing will be more difficult for her. She sounds lovely btw.

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r3dh3d · 17/10/2006 12:12

The other thing is that the social centre is on the right side of the brain, so you have dodged that particular bullet. DD1 has hemimegalencephaly of right hemisphere which (amongst other things) presents like autism due to lack of social processing - and we have no copying, no shared attention, no interest in others etc. All of which are prerequisites to eye-pointing, pointing etc and communication generally. So - total laypersons' opinion, but - it doesn't sound like the sort of ASD-type-disorder which I would imagine comes with some cases of CP.

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Socci · 17/10/2006 12:21

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Socci · 17/10/2006 12:24

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Socci · 17/10/2006 12:43

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Mollydolly · 17/10/2006 13:30

Sorrell - Really wasn't aware how important copying is - she really is a mimic and will attempt to copy most things me, dh and dd1 do, except the pointing and the things I mentioned in my first post (sigh).

Incidentally last night dh was playing with DD1 (shes 5)putting her over his shoulder and saying "penny a smack!" and dd1 was laughing and screaming. DD2 watched this, and then smacked her own leg and screamed a couple of times! She seemed to like it that she had a good excuse to scream and make a loud noise! BTW we weren't really smacking - don't want to start a whole new thread!
r3d - that's really interesting re the right side of the brain Iwas completely unaware.

Socci - did the CP diagnosis come before the ASD diagnosis for your friends dd?

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sorrell · 17/10/2006 13:32

Oh wow! That puts a very different light on things. While I do think mothers are very, very good at noticing differences in their children, a child who imitates all the time is really much less likely IMO to be on the spectrum IME.

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Socci · 17/10/2006 13:36

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Mollydolly · 17/10/2006 13:47

Oh Socci, you have been really helpful and tbh couldn't be any more worried than I already am IYSWIM. It is simply a real relief to be able to share my thoughts and feelings (good an bad) with others who at least take me seriously. Already feel better "equipped" to cope if a dx of ASD is what the future holds.

Sorrell - yes she does seem to copy a lot, raspberry blowing, strumming her lips with fingers to make funny noises, arms up when we say "Sooo Big!" Actually writing all this down has brought a lump to my throat when thinking of DD1 - she is such a patient little girl who loves her sister dearly and plays with her constantly despite having to take a back seat somewhat lately, what with visits to therapists/paed/portage etc. I love them both soooo much

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butty · 17/10/2006 13:50

Hi Mollydolly,

sounds like your doing a great job.

Regarding the trita you have mentioned, it definately does sound more to do with the CP.

My son has had many tests and yet fail to come up with a conclusive answer.

He is dx'd with globak development delay, hypotonia and more recntly ataxia.

All very much similar to CP, but wont dx it as brain scan came back normal whatever that really means!!!

DS is nearly 4 and can still only say 3 words that arnt entirely clear, he struggles with walking, but one thing for sure is that he totally understands.

At the end of the day, try not to worry too much on what she can't do and more on what she can do, i'm sure in time she will get there at her own pace.

In the meantime, good luck and take care.

Butty.xxx

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gracej · 17/10/2006 14:20

HI MollyDolly,
DH and I also thought DS was autistic, before we had a diagnosis. He has a brain attrophy most likely due to lack of oxygen.
I am now absolutely sure he is NOT autistic. In his case, many things like pointing, bringing things over, etc, were delayed due to his brain injury. I think this is probably the case with many children that have brain injury, things are delayed but they eventually happen.
Your DD at 16months sounds amazing!! I wish my 21 month old DS was doing half the things you mention. She really sounds very bright. And her social skills sound fine to me as well.

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Mollydolly · 17/10/2006 14:29

Butty - sorry if I'm being a bit dense but what does "trita" mean?

gracej - I was completely unaware that other things could be delayed due to brain injury such as cp. I was under the impression that her Cp would manifest itself as a physical thing only as the injury was in the motor cortex. I am really learning today.

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