Confused about 4.5 yo dd - does she have dyspraxia/something else going on

[13lucky]

HI there,

My dd is just over 4.5 yo and was diagnosed with hypotonia and hypermobility 3 years ago to quite a great extent. She copes quite well with it physically though all things considered, although she does fall a lot more than her peers, is very cautious, slow to do physical things etc...but she is getting there.

However, I've always in my heart of hearts wondered whether there is something else going on. This post could go on for ever so I will try and be as concise as I can.

As a baby, she screamed for the first 6 months and was generally irritable. She didn't feed at all well - had to give up breast feeding and bottle feeding was also a nightmare. She was late to talk but this has come on leaps and bounds - although she still mispronnounces a lot of words and has a limited use of language. She often finds it very difficult to explain simple things.

She has constant emotional outbursts about the tiniest things, and is very sensitive to touch - if she brushes past something she will yell 'ouch'. She seems to whinge and moan about most things - she can be happy and loving but is rather a jeckell and hyde and can change at the drop of a hat. I would say the majority of the time is whinging rather than being content. She also seems quite angry sometimes and gets cross if we don't give the answers she wants. She often tells us what she wants us to say! She is obsessed with routine and doesn't handle change well. She will have meltdowns if we go a different route for example, or do something a different way.

She tends to 'idolise' one particular child at a time and always wants to be doing what they're doing. Although to some extent this has improved with starting at school and she does appear to have a few friends in her class. Certainly she has been invited to a few parties so I think she is an accepted member of the class by her peers.

She constantly speaks over me and interrupts - I tell her not to but she just can't help herself. I find this especially difficult to deal with. She does not seem to be able to amuse herself when there are other adults around - her behaviour becomes quite rude and inappropriate.

On the other hand, she seems to behave perfectly at school - which is what baffles me...if she can turn the behaviour on and off, does this mean it's all just for my attention??

I've painted a bad picture of her - she is a gorgeous little girl who I love to bits and would do anything for - but I just worry there's something that I can't put my finger on.

Her physio suggested she needed to see an occupational therapist and she was the one who mentioned the word dyspraxia although she wasn't saying she had it specifically. She has suggested we go to the Christmas Children's Clinic near Tunbridge Wells - has anyone heard of this?

Sorry it's so long.

Bump

Sorry - anyone got any thoughts? Thank you.

I would suggest you maybe look into girls with ASD and dyspraxia/sensory issues. She sounds very much like my eldest DD who is 8 now and has ASD, but you really need to see a developmental paed. You need to see GP and ask for referal.
HTH

She sounds a lot like my Dd3 to 13lucky. She is 8 and is being assessed for a possible ASD, she has been seen by OT who found her to have hypermobility and poor muscle tone.

There are lots of people on here with loads of experience who can help. It just seems a bit quiet this weekend.

I agree with lisad... I would go and talk to your gp, make some notes about the things you have said on here. You don't have to take her with you but go prepared to tell him/her what you are worried about.

Good luck.

Meant to say, just because she can hold it in at school doesn't mean she is turning the behaviour on and off, it could be that she is working so hard to fit in at school that she is exhausted by the time she gets home.

13lucky - i would definitely check out the girls angle of ASD as Lisad said. Mumslife and i seem to have 'twins'. From what i have seen from this board girls are often harder to diagnose as they are more adept at 'fitting in' strategies. Only having DSs i have no knowledge of this.
I do know that with dyspraxia there are elements that you have mentioned that are very common. Over emotional/ heightened emotions, volume and frequency of speech etc.
I so know what you mean about the mispronunciation. Once they have learnt a word and 'filed' it away it is hard for them to 're-learn'. One of the good quick fixes that my SALT taught us was each time the word was mis-said to get them to repeat it quickly and correctly 5 times. This came in very handy over the summer when his new teachers name was being said more like a swear word than as it should be!

Ah thanks for your replies guys. I can't really think straight at the moment - I've got so much going on in my head and I'm worried about her a lot and also feel confused. My grandmother also died yesterday very suddenly and so emotionally I am all over the place.

Yes, mumslife, she does have good eye contact and seems to like playing with other children - so that side of things doesn't fit well with ASD but, like you say, I need to research more the girls' angle. She too can be very moodly, miserable, demanding and all those other things you mention at home.

I do need to see the GP I think but I tried mentioning it to him when I saw him last by saying I needed to come back to him and talk to him sometime about her behaviour and he kind of put me on the spot and asked what about and I got very emotional and teary and couldn't really express or give proper examples from the top of my head. I think he thought she sounded normal because I hadn't expressed it right and now feel silly to go back.

The clinic that the physio recommended (the christmas children's clinic) say on their website that they cover: - Dyspraxia

• Developmental Co-ordination Disorders
• Perceptual Motor Problems
• Sensory Integration Dysfunction
• Sensory Processing Disorders
• Autism Spectrum and Allied Disorders
• Attention Deficit / hyperactivity (ADHD)
• Complex Sensori-Motor Conditions

I rang up and they are expensive but in the grand scheme of things I feel like I need to get to the bottom of this. They apparently do an 'assessment' which I think would then give weight to going to the GP if I needed a referral. Does this seem like a good route?? I don't know - I'm just confused! Thanks for your help guys.

I know private route may be quicker and easier but please know that most proffessionals eg education ect arent keen on private diagnosis.
I would keep a diary for a few weeks, then do some reading on girls with ASD and then go back though the diary and highlight all the ASD pieces of your DD, then take that to GP.
Girls are very different to boys with asd. My eldest holds together fairly well in school and has a few choosen friends. Girls tend to manage the social side better than boys but then you have to look inot the way they start social interaction and the "rules" they create for friendships.
HTH

and so sorry to hear about your grandmother.

Hi, I lot of the things you say sound like my DD who is the same age. My DD has no acual problems (no diagnosis and no suggestion she needs one) I just looked at Special Needs out of interest and came across your post.

My DD has always been a tricky one, very emotional, highly strung, controlling about things, talks constantly, gets very upset when things happen that aren't the way she was expecting. If she is even a tiny bit unwell it affects her mood massively and makes her very difficult, she also does the getting angry if we don't give her the answer to a question she wants thing and constantly asks questions and tries to tell us what to say. Her playing is very intense in that it never stops and she goes from one thing to the next sort of playing with everything but no "one" thing at a time. Oh and mine was a difficult baby and toddler too. Always upset and I could never get through to her like I can her sibling. It had no affect so I felt like a terrible mum. Impossible to calm down and would scream and scream.

We have taught her not to interrupt and she sticks to that most of the time but if she is told to wait for something and not ask for it again or to be quiet she just can't do it! Sometimes it's like she just forgets instantly that we have told her to wait/not ask/be patient or quiet. She really doesn't want to get in trouble and wants to get her rewards for being good which is a thing that we do. She has no problems with speech at all and is infact an excellent talker and was from an early age.

I'm not sure what I'm trying to say. Maybe that a lot of the things you have said sound normal to me (although often when you add lots of info together it means something else and I'm no expert).

I have been wondering if my DD has a "problem" of some sort though. I've posted a lot in parenting lately as I have been trying to get to the bottom of it. A big part of me though thinks that she is just at the extreme end of "normal" although her teacher has said recently that she is very wiggling and can't pay attention for very long and gets easily distracted.

As I said I'm not sure what the point of this post is!

13lucky, your dd sounds incredibly similar to my ds1, who has hypotonia and hypermobility. He was recently diagnosed with aspergers. He is much more even tempered at home, now, and was always perfectly behaved at school, but as he got older, it became more obvious that there were issues at school - good behaviour is not the same thing as joining in properly, socialising in an age appropriate way and learning to the level expected of your abilities. I used to think he was dyspraxic, when he was very little, but it became clear that he could actually learn to do physical things quite well, he just needed to be taught. Dyspraxics normally find they gain skills one day and seem incapable the next (ie their motor skill acquisition is very uneven), often have a poor sense of direction, poor sense of time, poor working memory (he most definitely doesn't have this - his verbal memory, short and long term is phenomenal) etc, etc. Aspergers does fit him more, now - he seems incapable of keeping his less polite thoughts to himself! But he is also hugely imaginative, loving, adorable and mostly very well behaved.

Thanks for your replies guys. Can you let me know what you think of my idea to take her to the private clinic for an assessment and, if they come back with possible this or possible that, then I have this assessment as back up to take to the GP? Does that sound a reasonable course of action? I am a bit worried about going to the GP as a starting point as I did vagualy bring it up with him before and he doesn't seem to think there is an issue.

Thank you so much for all your replies so far. She does seem to fit with a lot of the aspergers traits...but agree with monkeyflippers that sometimes I'm just not sure whether she is just at the very extreme end of 'challenging' rather than being anything specific. I think generally I'm just confused and emotional at the moment!

My personal opinion with my ds1 was that his hypotonia was a big clue that he was likely to be more than a normal but challenging child. Hypotonia is not a diagnosis, it's a symptom, and it is more often than not a symptom of a central nervous system oddity. If it is, it seldom comes as the only symptom - children with hypotonia normally have other issues related to oddities in the functioning of their central nervous system, whether dyspraxia, co-ordination difficulties (not always diagnosed as dyspraxia), aspergers, autism, sensory sensitivities, visual perceptual difficulties, etc. These extra difficulties may be mild enough that no diagnosis is ever required, of course, although I still believe a child who is also hypotonic has less likelihood of growing out of these issues altogether than a child with no other markers of a central nervous system disorder. And when it comes down to it, whatever the school says now, hypotonia is going to cause issues for a child at school, and generally ones with respect to which schools have very little understanding. So the school will have issues with your child at some point, which they may decide to put down to clumsiness when this isn't the case; or low intelligence when this isn't the case; or with respect to which they may seek your permission to investigate further...

In summary, I might hold off doing anything if my child had your child's symptoms but was not hypotonic, but would be more inclined to act now given the hypotonia.

You have described your daughter's behaviour very eloquently. You are the first post in helping her and by identifying her behaviour in such a clear way you have made a really good start. My son has severe developmental co-ordination disorder - your description has many echoes for me. It is fairly new to identify these things and I got no help at infant school. But like all parents with these worries, and like you we have left no stone unturned. The trouble with private assessments is to find the right assessor, so starting with GP, school special needs teacher occupational therapist is a must first base. It is the start of a long journey. (Our saviour was Professor Amanda Kirby of the Dyscovery Centre.)You will go round in circles many times and you will find other parents appear from nowhere and give great support. It sounds to me like you have made a super start.

Hi, I've just come across your post and thought I would see if I can help. I am an occupational therapist who worked in paediatrics in the NHS for some years - I now do some private work in paediatrics and work in adult neurology in the NHS (though am currently on mat leave with ds2). Had to leave NHS paeds after having ds1, was an emotional wreck! My opinion is that it sounds more like a sensory processing problem than dyspraxia, and my advice would be to explore NHS services further before taking her to a private assessment clinic - can the physio not refer her to NHS Paed OT for you?

I read the posts on this thread to see if the description would match my DD's issues (she's very dyspraxic and epileptic). Many of the issues do (is sensory, motor co-ordination, poor memory etc), but others such as the controlling behaviour, poor eater, tantrums, fine at school but meltdown when gets home) match my supposed NT DS.

We are seeing CAMHs next week with him, but we'd put his behaviour down to attention-seeking due to DD's frequent illnesses. Am quite concerned now.

Also interesting to see Clare87's post as we were looking into seeing a private OT for her (she's had no help for dyspraxia to date) but maybe we should be pushing for an NHS referral.

NHS as slow as it can be is the way to go i have asked around about this for myself and opted not to as was told by quite a few people inc PP that they wont listen about private assesments esp the LEA so no pint spending a fortune as it does cost a fortune,(would gladly do so myself but no point if there going to ignore results) do you have more than one GP at your surgery if not what about asking your gp about a ref for an OT as they can then ref you to child development paed your entitled to a second opinion so if your GP isnt playing ball OT or speak to yr DD's schoola sen teacher explaining yr concerns. good luck

Agree with getting a referral to a NHS paed Occupational Therapist - either via the Physio you see at present or via your GP. I'd consider private assessment if the waiting list is really really long, but possibly not the best port of call first otherwise?

Ok, thanks so much for your replies. I phoned and spoke to my dd's NHS physio yesterday and told her my concerns and asked if she could refer her to an OT and she said she will look into it and find out how long the waiting list is etc, and let me know in half term when we next see her. She said she could either refer to an OT or to someone who would also look at coordination issues and dyspraxia and also deals in occupational health so I opted for her to look into this option. Is an OT the way to go then - they can diagnose aspergers / ASD etc??? Sorry to sound really thick - I don't know anything about OT (clearly!). She also mentioned something about an ABC checklist - do you know what this is and what it would test for?

Thanks so much for your advice. Does this sound like I'm on the right lines? Thank you all.

Ot's can diagnose dyspraxic like conditions and advise on how to help. They will have awareness of aspergers asd but won't be able to diagnose it. For that you need a paediatrician. The OT might be able to refer you onto a paediatrician if they think it is appropriate. Otherwise your GP for that!