dyslexia & HMS?

[christianne]

Hi Ted
The issues with concentration and forgetfulness/disorganisation are echoing my son Ewan's characterisitics. He was referred to the Dyscovery centre in cardiff by Dr Hakim where Dr Kirby has become a specialist in EDS/HMS in kids because of the volume of kids she was seeing with suspected dyspraxia who turned out to have EDS/HMS. She says(and Dr Hakim agrees)thatthe pain and proprioception issues that these kids have can cause their lack of concentration and that teachers could be thinking they have dyspraxia(because of clumsiness etc) and a.d.d because of the concentration issue, when in fact they have EDS/HMS. Ewan has no other condition that she tested him for, he has EDS 3. It was s relief because he didnt fit the pattern for dyspraxia etc even though some of the symptoms were similar. Of course, Carrie could possibly have some other condition but I wouldn't worry at the moment, 5 is very young to have clicked with reading anyway. Just a thought but have you had her eyes tested?
Christianne

[jez_the_cheetah]

hey!

i have this sort of problem. I was diagnosed as dyslexic in 2000, aged 7. This was mainly affecting my spelling. After many years of extra english lessons i am now just borderline dyslexic, but it still effects my spelling quite a bit. i.e i have to think about the spelling of words and sometimes when typing i have to retype it quite a bit. I am also severely hypermobile in my shoulders and am also 'normally' hypermobile in many of my other joints

jez

[christianne]

Hi Jez and welcome to the boards.Glad you were able to get specialised help, well done for working at it. Typing is hard enough to do without mistakes even when you aren't dyslexic!
Christianne

[jez_the_cheetah]

hey christianne

this may sound a little weird but thanks for welcoming me! I have been reading these boards for a little while now but have only started posting. I mainly got all of the specilised help through my school, but i go to a private school. I would definitely agree with you about how hard it is to type even when you are not dyslexic. It is possibly not helped much but HMS!

jez

[christianne]

Hey no problem you can pm me any time if you want a chat. i just moved my son to a private school for the extra small classes and the extra attention he will get to help with his EDS/HMS. Hope your shoulders improve
love Christianne

[TED]

I did these on line tests for adhd, dyspraxia and dyslexia for my daughter Carrie and it came back saying for all of them moderate to high risk of having all three!!!!!! I know this is not a formal diagnosis and that some symptoms can be attributed to hms/heds but I am going to discuss this with Prof Bird when we see him as Carrie has been awarded the funding to go and see him and I am hoping to be going with her and 2 of her sisters during the easter hols (not definate yet)

She is only 6 I know but things are not really changing and the problems she was having at 5 and still there and she is 7 this year. She mixes up her numbers. She get emotions mixed up and actually does not fully understand what some of them mean but that can be still to do with her age. She is chaotic and we are still always hunting for her stuff. She has lost her library book and we have hunted and hunted for two weeks for this book and I cant find it anywhere so I am going to have to pay for it. At school the teacher has established a routine for her which seems to be working & helping her. She needs that. She has been moved to a lower/slower paced reading group and is coming on great the teacher said she is at the top of that group but feels it is the right place for her and I agree. She needs someone to prompt her to do things and to focus her as she gets easily distracted. You can't give her more than one instruction at a time if you do her mind selects one option only, so if I tell her to put on her jumper,brush her hair and then teeth she selects option one.

Anyway i could go on and write loads more as she really is quite a character with her way of thinking but I wont.

TED

[Retro]

Hi TED,

They say everyone has some Autistic traits Can't remember where I heard it. For many years I thought Mark may be dyslexic because he get's letters round the wrong way etc. he still does at 12 Mark is very easily distracted (nearly all of his teachers mentioned that at parents evening) and is terrible for not reading questions...try not to worry, Carrie is really young still.



Lindsey

[TED]

Just wanted to say I'm taking on board what you are saying Retro, she is still really young. It is just that some of these issues are coming up in class. At the moment it is not I suppose so obvious to the other kids which is good but the teacher is noticing it. Of course all these things may simply be her eds/hms. I will ask Prof B when we see him soon and hopefully he can clear the matter up and I can inform the school etc.

TED

[Ruby]

Hey Ted,

I just read your post and I really feel for you. Being a parent is hard enough, but to watch your child struggle with difficulties you have experienced is heart wrenching. I have dyspraxia & Hms and the OT reckons dyslexia too but I got fed up of passing all the tests for rubbish disabilities so decided not to find out about the last one!
I have an 8 year old daughter, who is an absolute angel and very very clever but very clumsy and unorganised. For the past two years I have got myself into some states worrying she may be dyspraxic then more recently hms. I went to her school a year ago and explained to the teacher that I had dcd and was unable to remain objective, so could she keep an eye on my daughter for me, she didn't seem to know too much about dcd to i went to the headteacher who was fantastic and had just come back from a conference about dcd. I haven't mentioned hms to the school but will keep an eye on this. My daughters elbows bend upwards, I'm trying to keep it in perspective though as all children are quite bendy! It's hard but with the help of school I can keep an eye on her and if it does seem there may be problems ahead for her then I know how to help.
Perhaps you should speak to your child's school and let them know why your worrying and ask them to keep an eye out. Perhaps they haven't noticed anything as they are not looking for it!

Best Wishes

Ruby

[TED]

Hi Ruby it was the school who called me about Carrie saying that she was struggling with her reading & mixing up letters and numbers. I had noticed the same thing myself at home. Whilst doing her reading she was so slow and this did not improve as the week went on. Two of her sisters are older than her and they have all had the same books but always were a bit quicker with the reading and as the week went on knew it word for word. Carrie doesn't. She recognizes certain words but not all of it. She would/will guess the next word by looking at the picture etc. I went to a meeting at school last year and was told not to worry that they will keep an eye on it. They said she may be dyslexic/dyspraxic but at 5 years old is too young to test. She is now 6 and will be 7 in October.

I spoke to her teacher about this last week. I have told her that these things may simply be eds/hms and that we are due to see Prof Bird soon.

Now I know I should not worry i am trying really hard not to. But things she says and does I find worrying and upsetting. This morning for instance she ate her Cheerios and went up the stairs as I told her to go get the brush and brush her hair. I went upstairs to find her doing something else altogether which is not unusual for her. Today my eldest daughter and her class are doing a french cafe to raise money for charity and Carrie was excited about that and said "I can just have my breakfast at school mum" I said what do you mean "She said I forgot to have my breakfast, so I can have it at school" I then reminded her that she has only just eaten her breakfast 5 minutes ago and it was Cheerios and diluting juice and she said "Aw right" (which is one of her phrases.) Then we went down stairs and I showed her her school bag and pointed out her lunch bag and play piece in her school bag so she knew where it was. We then headed up the stairs to put her jacket on and she asked me "Oh where is my packed lunch bag" I then reminded her again it is in her school bag. Now I don't know what this is? Is this that she is thinking about other stuff when I speak to her. I Know for a fact she does faze out and go into a world of her own and doesn't hear me sometimes when I speak to her, but is there more to it than that? She has the ability to totally switch off to the world around her. Now I know everyone has the ability to do that to a certain extent. But this constantly daily trying to focus her in what she needs to do and I have to say it is tiring.
Last night she said to her wee sister "Your a disease" I told her who told you that and she said Katie in her class said it to her. Katie is bullying Carrie at the moment and has been saying a lot of nasty things to Carrie so I was at the school last week trying to sort that out. I told Carrie off and told her that this was a horrible/nasty thing to say and to never say that to anyone again. She was upset and said sorry. Now that worries me that she does not understand what things mean, of course I don't expect her to know what everything means but simple things I expect her to understand. But she also finds that one difficult and is easily carried along with other kids who are doing and saying the wrong thing but she actually does not realise that what she is doing is wrong until I or another adult explains it to her and this is only in P2 at school so what is ahead?

She is out of sorts just now and has been telling me that her back is sore and her legs so the pain issues are starting with her now too. Yesterday she was showing me her wrists and saying they are very sore also. She is very bendy and can do everything from the scoring system (9/9) with ease. This wee girl from her class is causing her to worry and I don't know what else to do about it. The teacher was going to speak to the 4 girls (they are in a group) individually and talk to them about being kind and nice to each other. Now I agree with this but it still has not sorted out this situation as last nights episode showed me. So Carrie for the past 4 days has been reluctant to go to school as she says she is feeling sick and on Friday actually was sick at school. I think this is nerves as she is unsure what to do about Katie. It is difficult as she hangs around in the same group as Carrie.

Another thing is it takes her ages to settle at night and this often drives Chloe mad as Chloe is exhausted and is trying to settle and Carrie wants to talk. They share a room and Carrie is in the top bunk. Carrie loves to draw and does so every day & night. Carrie's bed is always full of stuff and this often tumbles down on Chloe so this as you can imagine causes upset and fights. Then the morning is a whole other story Carrie is often bright and Breezy and yap yap yaps at Chloe. She does not understand that Chloe needs time to come to. I have explained it several times but it just goes into outer space. So there is often shouting at 7 in the morning from Chloe as Carrie annoys her so much and wont stop yapping or whatever she is doing even when Chloe asks her to.
So this is a problem too. She just does not understand that what she is doing is upsetting or annoying to Chloe.

Interaction with her sisters is a real problem. She does not understand their way and they don't understand hers. There is age difference issues and that is one reason but it is not the only reason. Chloe prefers Heather to play Bratz with as she feels they have the same ideas of what to do and how to play however, Heather is now getting older and is not interested in playing Bratz, she is interested in music/fashion/make up etc... So I sat Chloe down and had a talk with her about Heather changing and how she will not want to play with toys so much... but she has Carrie to play with. So I have said to Chloe she can play Bratz with Carrie but this always ends up in a fight. Chloe feels Carrie does not play it right but I have explained that her ideas are just different from Heathers and just to go with it and enjoy new ideas and a different point of view in playing these games. But Chloe does not like Carries ideas. Carrie perhaps wants them to go into outer space or something like that when Chloe just wants them to go to the mall. So I am constantly trying to sort this out and encourage both her sisters to include her even though she has different ideas from them & to embrace them and not to squash her personality because she is different. This is a battle.

So even though she is so young whatever this is whether it is hms/heds symptoms or dyslexia/dyspraxia it is causing real problems at home and at school.

TED

[Retro]

Hi TED,

Alot of what you're saying about Carrie reminds me a lot of Mark. I was worried about his reading/writing right up until he was in p6 or 7, even now I go mad at the state of his spelling and handwriting but he just say's "the teachers don't care so why should I" His reading and to a degree his writing did improve suddenly in p6 or 7. His writing was especially helped by getting him Yoropen pencils but he refuses point blank to use them now he's in the academy.

Mark can talk for Scotland! It was always a problem in primary school although it seems to have calmed down a little in the academy (his teachers didn't complain about it at parent's evening...the next one might be different). He also doesn't seem to listen to/remember simple instructions. He's told to tidy his room but always gets sidetracked, he's told repeatedly about leaving drinks cans and sweety papers in the computer cabinet and yet he still does, even tho' he's now banned from the computer for a day for each can left there. We've been telling him to not interrupt conversations since he started talking and yet he still does it, remember, he's 12 now! His teachers did nearly all complain that he's off in a world of his own a lot in class...I offended his science teacher by telling her I thought he was bored and he's really easily distracted, when I spoke to him about this, he said he can't help it, it's not his fault it's his friends who keep talking to him! I suggested he not sit near them but he said that's not an option so this is something I need to take up with the school. These of course are just examples.

Mark is incredibly intelligent and has been moved into the top group for all subjects despite all of these problems. I can't for love nor money get him to not leave his homework until the last minute and he has been caught out by this on more than one occasion but still, he does it, even tho' I ask him every night "do you have any homework, not just any due tomorrow"!

Kids, who'd have em

Lindsey x

[hannah]

One of my sisters is as forgetful as anything. For example: she cleans my floors for pocket money each week. The other week when she arrived I asked her to make sure she puts things back when shes moved them - like not leaving the rug on the chair . Her response was "but I don't!" looking bemused - actually she had left it on the chair for the past 4 weeks. she was about to leave and I said "did you put the rug back?" "I just did it" - look in the room and hey presto rug on chair.
She wasn't lying, she just forgot she hadn't. She also lives in a world of her own on occaision, and can seem slow on the uptake in some things, but she is actually very bright (age 13). I think she just gets wrapped up in what she is thinking about and forgets to register what is said to her/what she has just done. She requires a lot more supervision in doing chores than her 11 yr old sister. (they are both diagnosed HMS/EDS) Overall, she is a normal 13yr old though, and as a family I guess we've learnt to just accept it as a facet of her whole character - and tried to ensure that if something is really important, we follow it up and make sure she doesn't get that 'far away look' half way through the instructions. If the 'far away look' appears I try to remember that she hasn't registered whatever it was and try to tell her again later. But key is I have learnt that she likes to be spontaeous - just do things now, so although I will mention things in advance, I have found it much less stressful to tell her things when they become relevant. 2 of my brothers are also similar, (21yrs and 19yrs) but they have both improved with age - as in they are more able to recognise when something is important and actually register it. 21yrs brother is extremely dyslexic, the others aren't.

Incidentally although 21yrs brother found school pretty tough - he was really behind at primary school with reading etc, he is now studying at uni and doing really really well, and says if they found a miracle 'cure' for dyslexia he wouldn't touch it, because it is part of who he is.

Dunno if this is any help TED. can't remeber what point I was trying to make either
I too can talk for england - in case you hadn't noticed

[TED]

Hi I wouldn't change Carrie for the world as I love her the way she is. I just hope others can accept her for who she is as I do and as I encourage her sisters to do.

I just don't want her treated by others in a bad way because she is different.

Carrie is a chatter box and could talk forever and I am told at times has to be reminded at school when to be quiet.

Yip, totally recognize that far away look we see that every day.

She is also very bright but struggles to get her intelligence down on paper . She is very arty. She calls herself an artiste!!!!!

Yip no one said having kids would be easy!!!!!!!!!! But I truly love them all and am glad they are mine.

Ted

[janey]

My son Joe, now aged 20, was similar to Carrie throughout his school days. He could not sit still, do what he was told, clumsy etc BUT was always happy and had lots of friends. He now holds down a full time job, works hard and plays harder and has an enviable social life. I wish I could have seen all of this when he was younger and I was stressing about him! I do think schools put an awful lot of pressure on kids to conform but we are all different and schools sometimes don't allow for those differences. Joe's school reports always described him as a 'most interesting boy'!!

[TED]

I was talking to my older daughter last night as she is having problems with Carrie. She takes Carrie to school in the morning and back home after as I cant do this as I have to see Chloe off as she gets transport to school in the morning and that arrives 5 minutes after the others leave. I Wish sometimes I had the ability to be in two places at the one time!!!! Heather was telling me of the difficulties she is having keeping control of Carrie on the way to and home from school. Carrie gets caught up and distracted by seeing her friends and starts shouting at them from the end of the street at the top of her voice and Heather told her to stop doing this as it is embarassing and there are houses next to them where people live. She also has no sense of danger and walks right out into the road. She is so in her own wee world that she does not even look and Heather has told me that she has to shout to get her to stop. They cross two small roads and one main road and the lollipop man is at the main road. Heather was saying that Carrie sometimes steps out in front of the lollipop man onto the main road and this road is very busy. So I am going to have to talk to her about this when she comes home but am worried will it really sink in that this behaviour is dangerous. She also gets fed up with Heather telling her what to do sometimes and runs away from her and Heather is worried that something bad may happen to her because of this and all these things she does. So this is a worry the danger element. So I am going to talk to her tonight about danger and see if it hits home if not them I am going to have to make another arrangement for getting her to school.

Last nights Maths homework was a nightmare for her, it was a sheet with a list of numbers like 34,37,43 and she was to colour the largest number one colour and the lowest another, she just couldn't get this. Then it had a list with some numbers missing and you were to put in the missing numbers. It was a sheet about what comes before and after and she really does not get it yet. The teacher told me last week when I went to see her that she has been struggling with this for a few weeks and she has given her a hundred square home to help with it. Things like adding and take away are an issue too. Anyway to be honest I am not too worried about the academic side of things as I know she has the potential to be whatever she wants to be. I am just mentioning what is going on with her at the moment.

TED