Some positive and encouraging stories needed, please

[Lougle]

The DLA form has got me dwelling on DD1.

She has poor fine motor skills. Her fingers curl slightly. Grip strength low, can't draw beyond a scribble, (approximate) circle and (approximate) cross (she is 4.7). Hands/arms tremor slightly, but I don't know if it is the epilepsy (Paed thinks so because he only noticed it in January), or if it is a motor issue (I kinda think it was always there).

Anyhoo...

I got to thinking today, about school, writing and so on. I think she is a long way off writing. I wonder if she will write at all, but could be being very pessimistic.

Then I thought 'I suppose she could use a laptop.' But right now, she doesn't have enough fine motor control to use a laptop track pad. She can't even make a 'click' by tapping the pad. Her hands are too weak and she doesn't have a definite enough 'prod' or enough control to keep her finger in one spot. A mouse is impossible because her hands shake, so the cursor zooms across the screen when she tries to move it at all.

I know she is still young, so perhaps I am expecting too much (I just see posts on MN about their 3 year olds loving to use the computer, and friends who have DCs allow them 'computer time')

SO, who would like to make an orderly queue to tell me that their child was the same at this age, and is now writing prose and using a laptop with ease??

well

dd1 was similar. she is 6 at the weekend.

and no, she can't write (motor control and planning still too poor), nor can she draw.

she cannot use a mouse - she does not "get" the connection between using it and what is happening on the screen.

BUT. she enjoys computer games - she just needs help to complete them. this is far from where she was a year ago.

she cannot write, but she is beginning to read. and has started typing a little (random letters, but still picking out the ones she wants)

d1 plays the comuter games by tapping the screen where she wants to/needs to, and we move the cursor, then she helps us click it. we should fork out for a touchscreen, really , but I thik it's a little early to be doign so - she is getting by ok, and maybe one day the mouse issue will resolve itself...

so, not a very helpful post really, but lots of sympathy and hugs

DS2 can't write.... as we're having tremendous problems with the lea (have been turned down for stat assess twice) the paediatrician applied to the local lions for money for a laptop for him...

technology could be really helpful

No, that is encouraging, silverfrog - your DD sounds amazing, she has been on my list of 'MN SN board children I'd love to meet' for a while now

I don't want miracles, it just struck me today that it is a huge barrier to overcome. I suppose that I will perhaps notice it less with her going to a Special School this year. She will be in good company.

However, her NT sister will start school in September 2011, so I am expecting that to be a tough year emotionally. Hard to feel joy for one child achieving and developing while one of your other children struggles.

When ds struggled with a mouse we managed to buy a massive rollerball mouse so the ball was a few inches across so he found it easier to control. Don't know if you can still get them. Or if she can tap keys you can change the arrow keys on the keyboard to move the mouse.
Ds struggled with holding a pen in reception as he couldn't hold it hard enough to make a mark On the paper but unlike your lo he didn't tremor so I don't know if either of the above are possible solutions.

We have just bought dd2 i rollerball mouse Bigtrack, she was struggling with a normal mouse (couldn't keep it still and click]], we have had it a week and she is now surfing the net and using you-tube, she's 4.5, her hands are not too bad (just her fine motor skills) and can write and draw.

oh, yes, agree wrt school issues.

dd1 started at her SN (ABA) school last December. the changes in her are enormous - not all of them academic, but jus thtings that now she has the chance to relax, breathe a little, and take in her surroundings, she is able ot do so much more (her school is tiny - only 3 pupils!)

so, now we can have mini-conversations. she lays the table for meals, for however many people are eating. she helps clear after meals, and load/unload the dishwasher.

we went shopping in bluewater today, and she walked the whole time - was a bit jumpy and excitable, but able to be calmed. she waited well while I was paying (mostly - there was a bit of rolling on the floor) and when she didn't, she responded to "if you want raisins in the car after shopping, then come and wait with me" she behaved, on the whole, better than dd2 (3 and NT, possible AS)

she helped me push the trolley around the supermarket, and took turns with dd2 to put things in. she didn't try to put eveeything she saw in, as she would have done last year, and she didn't just pick up everything and drop it on the floor, as she would have done until recently.

so, not all her progress has been academic at all. and it has mostly come about (especially the social side of her progress) sincer her start at SN school.

but, in Sept, dd2 starts pre-school. and so she will be doing all the "normal" school stuff. and yes, my heart will split again - it is so hard to be happy for all the things dd2 will get to do at school without wishing it were possible for dd1 as well.

but then, i think we are going to have tears and tantrums form dd2 when she realises she is not going to dd1's school - dd2 loves it there too!

and thank you for your kind words re: dd1. I think she is great (althoguh she certainly has her moments!). mayeb one day e will achieve that SN meet-up!

LittleMissGreen - welcome to the SN section, I don't think I have seen you here before. Thanks for your advice, I will look at the keyboard settings.

Marne, that looks like a very cool mouse. $79 dollars! though. I might wait until she is in school and ask them what they recommend.

silverfrog, I am really hoping that the school can unlock DD1. She really is a treasure. I don't give a stuff about academics, if she could be content and less anxious and hyper, I'd be over the moon.

Hi Lougle
Thanks for the welcome, I have only been here a few days, DS1 is 8 and probably has AS, just awaiting final assessment, posted a few messages , but learnt loads from reading other peoples.

I took a film of her telling her bedtime story (round up of the days activities - meals feature heavily ) a little while back. I might try to upload it, and show you what I mean.

she is just so much more chilled, able to listen, able to respond to questions/others' conversations. It is unbelievable. And all because she now goes to the right school, and is less stressed overall.

I too couldn't care about the academics - I want dd1 to be happy, and as able as possible to be as independent as possible.

give your dd1 time to settle at her new school, and I bet you see big changes too - you are bound to, with a better environment for her, she willbe less stressed too.

jsut re-read your first post, littlemissgreen - thanks for that, will let school know when dd1 goes back. she loves her computer time, and if that helps her a bit, it will be great.

DS has fine motor probs, now 9 can't write though can read and spell. He eventually had an assessment through the school and we got an excellent report. We were told what would suit him and the school applied for funds to get it. He uses laptop at home with mini mouse. She also recommended websites to help get coordination www.helpkidzlearn.com was one of them.

If anybody wants it FFP I have one of these keyboards I don't need. www.amazon.co.uk/Special-Needs-Qwerty-Coloured-Keyboard/dp/B0012LDDY6/ref=sr_1_1?ie=UTF8&s=electroni cs&qid=1280949065&sr=8-1

Oh, thanks Star! That is fab. I will book mark it.

ohmeohmy, that keyboard looks great. I won't make a grab for it, because DD1 isn't even seeming to be approaching letter recognition except 'M' right now, so don't want to be greedy if someone else's DC is further ahead and will benefit. If you don't get any takers though, I might reconsider, thank you.

ds2 was v like as you describe at the same age

he was statemented from the age of 2 (spastic diplegia cerebral palsy), and although his main issues are from his waist down, he also has issues with his fine motor skills as a result, so his writing and drawing etc is not on the same level as his peers (he is 9 now)

also if he uses his hands for too long they do go into spasm and tremor and his arms stiffen, then his posture gets affected etc

he was given a laptop at infant school to help him keep up with his school work, initially it was one adapted with a special mouse to make it easier for him to use, and they kept up with encouraging his writing skills as well

his laptop will go through his entire schooling as he will never be able to write as legibly or quickly as his friends or people his age, but he now can use a non adapted one, and when he does write it is significantly easier to read

there are options available for your dd , dont worry

ds is also allowed to have someone else scribe for him when his hands get tired at school (he has full time one to one help, though they do encourage his independence and they are brilliant), and i do often write for him wrt homework, but he does do as much as possible himself and there has been a huge improvement over the years

hth

Thanks lou33, that is encouraging. Again, I don't have an issue with writing or lack of it as she gets older. Although life will be much easier for her if she could just scribble a note on a scrap of paper, etc. But obviously the thought of her not managing a computer either was a bit scary! I'm glad there are lots of options out there.

it is scary, i think it gets overwhelmingly so of we think too far ahead and too globally iyswim

provisions for children with special needs is always improving

does she have a statement in place?

ds has had one since he was 2, this area is one that will routinely statement children before school age, which helps, but i found with that sorted things were put into place often before i had even thought that far

i do seem to be in a particularly good area for this i think though (sw surrey)

Yes, lou33, she has had a statement since 4.1, but it hasn't really been implemented yet, because she was at a mainstream nursery and they couldn't action the statement particulars because they didn't have the environment, the knowledge or the resources. The statement was written for a SN School environment. But we knew that was going to be the case. She had full 1:1 at the preschool.

She is affected in every area through her condition, although only moderately affected, I suppose. The combined effect is fairly devastating though. Although I am led to believe that on paper at least, she will be one of the most able children at the Special School.

The thing with DD1 is that she is so determined, and she has no barriers, no social 'norms' have sunk in, so she just takes what she wants from life, which means that she barrels on in there and does whatever it takes to get the best out of every situation.

Her SN were only identified when she was 2.9, I had had concerns prior, but HVs dismissed them, essentially, and it was only when she started preschool that they said 'she needs help'. All the things that we thought were signs that she was advanced (no separation anxiety, ever. Very intense staring at things, seemingly taking it all in. Detailed examination of working parts of things, etc.) were actually her SN.

having the statement is good, they can take a good few months to kick in though, but at her age it will be reviewed every 6 months, then later every 12 months, so make sure when they review it you push for what you think she needs and dont be afraid to do so

ds is in mainstream school, they spent about 350k adapting it to make sure he could go there, with another girl who also has cp and is the same age but has different needs

it has become almost a beacon school in this area, for children with sn in a mainstream environment now because of this, i have to say i am really v happy with their efforts
his one to one helpers are great too, one of them lives in my road and one is not far away, and also has an older son with cp

I doubt they will bother to review it, this time, to be honest. In fact, I know they won't because it was finalised on January 20th, and they need to give 6 weeks notice of the review. Review would be due on August 20th. Additionally, it is the school's responsibility to call the Review, and her old preschool wouldn't have the first clue about doing that (they've never had a child as SN as DD1). Finally, her statement says 'til July, MS Preschool, from September, Special school', and the statement is written as if she were already at Special School, so there is nothing to modify.

I don't think they have accurately identified her needs yet though, simply because the NHS SALT was useless, and only started seeing her regularly since I put in a complaint. Also, her very good OT left the NHS at Christmas, and her new OT has never actually met her

The Special school sound fantastic though, and the Head has already flagged DD1 up for a Sensory needs programme, and is convinced just from meeting her once that she has ADD/ADHD (I agree) as part of her presentation, so is very on the ball.

oh thats a slight bummer in which case

no harm in bugging them though, but it sounds as though once she starts her school thinks will get easier, if that is any consolation?

Hi lougle, I have the previous version or the trackball, called microsoft easy ball, my Dd3 doesnt use it anymore it is the same connection as a ps2 mouse , if it is any use to your Dd she can have it. Its quite old and a little tatty but it still works on our system.
Let me know and will get your details. I am not very well up on private mailing but I am sure someone will tell me how to do it.
If you don't want it maybe someone else on sn might.

Lougle, dd2 is also starting school in Sept and I am hoping for some positive changes in her, and I would be over the moon if some of those changes were like silverfrog's dd has made.

dd is same age as your dd. She cannot make any markings on the page other than scribble and seems to have little control over hands with pens etc.

However we have a Mac with a user friendly mouse and she can now use it but has found it impossible to use a PC mouse, she can't get that the bit in the middle isn't what you press.. She tried a laptop at nursery.. No good at all.

She loves the cbeebies website especially the music and some games but I would always click on her selection as she couldn't control the mouse for a long time - it would just roll off the mouse and off the table, and she didn't work out the cause and effect bit at all..

Then after a couple of years of this.. I was called away whilst doing this with her and after a few moments returned to see her struggling but managing to select a song and click the mouse to play it.. She was so pleased with herself! We have never looked back really and that was about 5 months ago..

It still takes ages to get it right at times and sometimes she gets frustrated but last weekend she came down in the morning and turned on the the computer, clicked on the internet icon and selected her favourite song from the cartoonito website! From her drop down menu favourites list! Amazing - in about 6 months!!

She is barely verbal and can only use one word at a time. Appears to only have 1-2 word understanding.. She is identified as moderate learning disability and has such an uneven profile of learning,e.g really struggles with toddlers shape sorter, or matching game toys, or building bricks, large lego - all pretty impossible BUT has really grasped these complex computer skills so don't give up hope yet!

It has changed our lives and allows her to make choices about things we do or watch/listen do and that's been wonderful..

Fingers crossed she works out how to use the mouse at school or she'll be very frustrated.

I know your dd has different problems to mine but hth.. sorry for long reply.. Hang in there.

ds is 5.1 and cant hold pen in correct postion uses a fist grip and really only scribbles .September he will be in year 1

But i would reccomend a tracker ball mouse and can always get a switch for the clicking .

Not quite sure what going to do about handwriting with ds am currently waiting for private ot assesments

Sorry can't help in any way but can empathise with your concerns as DD (age 3) has similar difficulties. Her not being able to write keeps me awake at night but I can't see how she will as she also has a slight 'tremor' and weak, curling fingers

My DD has 'subtle' basal ganglia injury which apparently always affects ability to write...