not really sure where i stand

[Deafworm]

I posted this in SN education and was advised to repost in here, sorry for duplicate

Hi all,im not really sure if my dd2 is even classed as SN so if im in the wrong place please tell me.

my dd2 has epilepsy and speech delay. at one stage dyspraxia was mentioned and its becoming clear that she doesnt pick things up as easily as other children, she will be 4 in april and still cant count to 5 every time. I dont mind this and in her own way shes an amazing little girl, as long as she is happy i really dont mind that much what speed she is at. she loves singing and being active and giggles all the time so please dont take my comments about her learning pace as judgment or anything.

this is where the problem comes in though, before we moved here we had a 'learning plan' (mainly tied into the speech therapy) with the nursery she was at and they asked us to come speak to the senco etc. it felt as if they took her as an individual. DH is in the forces and when we moved she had a break from nursery till september when i had to nag and nag to get a 5 minute appointment with the nursery teachers simply to discuss what to watch out with her seizures and how to handle different scenarios, really basic stuff but very important. i also mentioned the speech delay and that despite being discharged on moving i had been taking her to the SALT drop in run in the town every 6 months or so since we moved to keep an eye on it and they were happy that although slowly she was progressing. in oct/nov the epilepsy consultant re reffered her into SALT over concerns of a crossover between the epilepsy and the speech due to new meds.

fast forward to a few weeks ago and i was pulled to one side after the session and told it wasnt acceptable to wait for the refferal i needed to take her back to the drop in as 'she never speaks in sessions, we dont like to push if we dont understand her first time and really she is starting proper school in september something has to be done about it' which if im honest ive been stewing over ever since, it concerns me that they say she doesnt talk or interract in nursery as normally she talks to everyone (including the headmaster when he came to a community meeting recently) and is generally quite happy to repeat herself a couple of times.

we did as asked and she is having a full assesment with someone from the SALT team on tuesday morning, and parents evening is after school that evening. essentially this whole waffle has been about me not knowing what i should be expecting and asking from them. Im not sure if she is SN, Im not even sure what the criteria for this is, should i be expecting something along the lines of what we had at the last nursery, is it too early to worry about the speed she seems to be picking things up at? im not a pushy parent but if she has got delays i want her to get the support she needs and from what i have seen that can be a battle, adding in the frequent moving it worries me.

sorry for such a long waffle, im just not sure what we should be expecting at this stage and whether anybody should be picking up on her unique little behaviors and her struggles.

ca you explain a little more about her "unique little behaviours"
If its just a speech and language delay you do need an assessment so that nursery know what they can do to help bring her forward.
They really shouldnt have discharged you, but referred her to new team when you moved, but thats done and passed now.

Ok, I will try and help here if I can but others with more experience may come along.
I have a son the same age and he has a mild speech delay with a serious speech disorder. (can't understand him).

Firstly, you may need to become pushy mum. You are your childs best advocate. If you feel there is something she needs help with then you need to push for it, because the experience of many on here is that schools often don't.

The fact that you are moving around will make it harder so I would say it is essential that you keep good paper records of all issues/dealings with professionals/current help etc, so that if you do move then in theory support can be put in place quicker.

Ok regarding the meeting, make sure the salt gives you a written report. Ask them whether there is a delay and if it is significant, or if there is a speech disorder present. (you mentioned dyspraxia, is this in general i'e related to movements etc or oral/verbal dyspraxia?) the two are often linked and this is important as while a minor speech delay not be a huge concern an associated disorder will probably require therapy.

Make sure you ask what their recommendations are , i.e does she need therapy, how often etc, try and get this in writing.

Is your child being seen at pre-school? If not make sure you tell the salt about the selective mutism at school, they may then agree to she her there as well.Also when school say she doesn't talk. Do they mean she won't answer direct questions or she doesn't talk spontaneously much? Have you noticed her do this in any other situations? If not then maybe there are issues at pre-school. Do you have any concerns other than the speech?

Sorry throwing questions back at you, its just the advice you get will differ depending on whether you think there is just a speech and language problem or whether there are other concerns.

sorry Lisa i didn't make myself clear, they discharged her as they were happy with her progress, some of that slipped back on a medication change but in general the drop in in new area have been happy too. nursery spoke to me as if not pushing the SALT drop in for more attention was me being lazy/ignoring her problems but have offered no help or even dialogue when i have brought up concerns.

as for her uniqueness(sounds silly now sorry) she is constantly falling over, covered in bruises head to toe.

she gets repetitive, e.g she sings one line of a song over and over for long periods. tied into this dh says she often sings sentences in the tune of whatever song she is obsessing over (i havent noticed this one but possibly because it doesnt sound like something id worry about)

has bursts of anger, and serious tantrums, not the sort where you deal with it and then move on (she has those too!) but she gets so angry she cant calm herself and anything we say or do just gets worse so we tend to step back and eventually she calms but when you ask her what was wrong she cant tell you, though not so many of those since the med change, we have always assumed they were tied to the epilepsy.

she gets quite fixated on facts/routine too, if you tell her something is happening or she decides it should be she can get very frustrated and upset at changes.

she forgets things all the time, in a senior moment sort of way, halfway through something or a sentence and she just stops and says i cant remember, she often gets upset about this and quite distressed.

i think i just cant work out if everything is covered between the epilepsy and the speech and if so does she need extra support or if there is something else in the background too, its mainly a niggling feeling but hard to put my finger on why.

Ok, given what you have now said I would defo go to the gp and ask for a referal to a paediatrician. What you are describing might just be to do with the epilepsy and speech but there may also be other issues and the only way you'll know is by getting a paed on board as ultimatly they are the ones who can make diagnosis' etc.
If it helps, I had lots of concerns about 'little niggles' with my son from him being quite small. His speech was delayed and I got a lot of 'oh he'll catch up' and 'he'll do it in his own time' etc. I persisted as I wasn't convinced and whilst his speech delay is not too bad now, his speech patterns are all over the place. If I hadn't pushed for salt he wouldn't be doing so well.
Also is there a portage service in your area? We were refered by a health visitor. Portage tend to come and see the child at home on a weekly basis to offer early years support. Ours was very good but stopped when my son started pre-school. This might be worth looking into.

Thanks feynman, appreciate the help, feel like im being awkward and shouting about nothing as my concerns are hard to put my finger on.

I think you may be right on the pushy mum bit im just not sure if/what i should be pushing for, my dd1 is in year one with no issues and no family history. if dd2 needs me to be pushy i will, im just not sure if theres actually anything to be pushy about.

we have pretty good handheld notes which im working on getting all together into a folder, this has proven invaluable in both the moves since her epilepsy diagnosis

Thanks for the tips on what to ask SALT this time, dyspraxia was mentioned at one appointment in a passing suspicion sort of way and then never again but the drop in here have mentioned her mouth seems slow to make movements and she is massively clumsy.I was considering asking specifically about this even if just to rule it out?

I will try to grab the teachers after tomorrows session to ask the questions you mention, i was taken by surprise when she brought it up as we had noticed huge improvements (still nowhere near 'normal' but great for her) in speech around that time so i dont think i got as much info as i could have. she talks to everyone whether they understand or not! and is always singing usually we cant shut her up :o she is the middle of 3 and holds her own with them too.

as above she has some little quirks of her own but im not sure if they are issues or just her way if that makes sense, i think ive worked quite hard at being polite mum and not letting her epilepsy worry me about other things. im always that person who doesnt make a fuss, feels like im wasting drs time when im ill etc so it feels kind of wrong to be worrying about things that could well just be her personality, she is so lovely and such a happy cuddly little thing most of the time.

dont worry about throwing questions, i really appreciate you taking the time, i really dont know where we stand with her and im constantly putting a brave face on things but even with nothing else between the epilepsy and the speech and some of the above behaviours she feels like hard work at times. and that feels very disloyal

Thank you fenyman, i think the consultant we see for epilepsy is 'just' a normal peadiatrician as when we changed meds she went to get confirmation from a colleague who specialises in epilepsy. so i will try to talk to her about these things at our next appointment.

we had to really push for the epilepsy diagnisis, consultant tried ever other explanation he could find including saying i was lieing about how her seizures occurred to the extent he made me video one, im happy to push if needs be but reluctant to push if im just being oversensitive, lets face it all 3 year olds are a bit odd!

thanks justabout, i guess thats what i needed to hear, have spent quite a long time telling myself its just her way, dont like hearing it but i think i needed someone to tell me they were an issue, guess pushy mummy is back

oh and thank you for the portage suggestion fenyman, had never heard of that. have had a quick look and will look into it more tomorrow

Hi
Not giving you medical advice here but I have worked both in paediatrics and in children mental health services and worked with children with a range of special needs Epilepsy in itself can be a special need, ie if unstable, or if associated with behavioural difficulties etc. It might just mean that her needs are to access Paaediatric services and her medication.
At least to monitor her epilepsy, you will be justified to ask your new GP to refer your daughter to a local paediatrician.

Once you see a paediatrician, I would come with a written list of concerns (just print what you said above, that's quite detailed and add any previous letters or reports) and ask for a full developmental assessment, checking how she is doing with milestones in all areas. If they identify anything, you can choose to share this information with her school (you don't have to, medical info is confidential) and ask school to support her. School should have access to a SENCO (Special Education Need Coordinator Officer?, sorry can't remember the exact term)

Special needs are just that, needs not met with routine ways. It does not mean it has to be very severe or only medical. Most of the times, schools have a provision to support children with a bit of extra help, usually not 1:1, and if this becomes too complex or demanding, they may need extra money to support your daughter and they may go down the Statement of Special Education Need route. In my area, parents can request an assessment for statement if they feel that their children need more help than school does/can provide.
Maybe you can look this up in your area as this seems to change with each county/LEA.

If parents ask for an assessment for SEN, it does not mean that children will always get extra help, sometimes it's just strategies, eg support in play ground with no need for a SEN statement, but the Local Education Authority has to justify if they choose not to assess for a statement, ie that these special needs are being met already.

You seem to have a lot of questions and genuine concerns so asking your GP to refer you to see a Paediatrician would seem appropriate, I think, at least to check how your daughter is doing and agree a plan to monitor/support her. I would hate to be stuck with all these worries and not have anyone there to put my mind at rest one way or the other. Good luck, I hope I did not make it sound worse than it is.
A

Good. Pleased you found your way here. I knew the ladies would be able to help. :)

hi zzzzz good luck with the weaning and nursery.

dd from an epilepsy perspective. she was put onto epilim originally which didnt control her very well at all and kept upping the dose. in august we switched to tegretol (not sure what you have experience of) the reason for the change is that from what id been told by an epilepsy specialist nurse i was concerned hers was more focal, and therefore mainly absences, consultant sent her for an eeg/ecg i can never remember which is which, the brain one, where she had them in stitches as she just couldnt keep still, so she was absolutely still from the waist up and dancing her legs all over the place :o the upshot of this was that it showed 'dozens of small seizures' over a 45 minute scan (if i remember rightly in her left brain) tegretol is meant to be controlling it but i was tempted to ask for a follow up test to see how its doing as im a bit concerned she has got one of the side effects of the drug too,i know none of them will ever be perfect but it seems best to have the facts on the table. they are going to love me arent they!

she is having a full SAL assesment this tuesday and is back at the hospital in just over a month, she is having breakthrough absenses at the moment but she has just had a growth spurt so we arent too surprised.

The school should tell you in writing that they have the training to deal with your child, they can get training from your gp's practice or pead. i think right now this is a huge concern, i dont think they are taking her seriously at all and i couldnt work out if we were treated really well before or poorly here, i know there is a new SENCO in post so im tempted to talk to nursery at parents evening and contemplate asking tosee SENCO after consultants appointment.

I thought the tantrums were tied in to epilepsy, they are (99% certain) not meds related, as they started about 2/3 weeks before her first seizures at 18months. how do you deal with them with regard to other people? we live in a very closeknit area and being 'incommers' everyone knows us and we have had a few well meaning comments which have left me feeling i have to explain and then i feel like im just making excuses.

dont worry about rambly,im doing quite a good job of that myself!

thanks carpediem, our consultant, i assume she is a peadiatrician, its never been specified is lovely. we were once an hour late into an appointment as she had sat with one family and gone through all of their concerns so im hopeful she will listen. I think this has all been floating in the back of my head without me acknowledging it. its taken a while for me to start to feel like actually the nursery arent supporting her well, and then when i started this thread it sort of opened the floodgates, thank you everyone for your support, and thanks Ben10isthespawnofthedevil for the suggestion, i guess i just try to avoid making a fuss and thought all of these things were dd being a bit unique and not worth fussing about.

Deafworm

The first time I posted on here I was nervous too - nervous of the knowledge and also that my son's issues are minor compared so many of the other children discussed on the board. However you will find that this board is unique for the helpful and informative responses that you get to guide you through where to go next.

Hope you get it sorted

Deafworm - nothing to add to the good advice you have already been given; welcome to the SN boards!

Thank you all for being so welcoming and helpful, i'm pulling this thread apart into jobs and people i need to talk to, i really appreciate all your help and intend to act on it.

Special needs to me just means that your child has needs that aren't in the normal run of things this has been floating through my head all night and i really thank you for saying it, ive been reluctant to post or to push for anything as it hasnt felt like she fits with 'just' epilepsy, and when ive asked for support in the past ive been met with blankness and comments about how its never been seen as neccesary, but without other parents to talk to i dont know where her behaviour fits. i do think the best was asking a local charity who support sn children whether we fitted their remit, being told probably not, going to a course at the surestart centre later and being asked if i had any advice for this isolated parent of a child with epilepsy!

I typed up and printed out a set of questions for nursery mainly about her speech and behavior from suggestions on this thread and took it in this morning, i gave it to them explaining i would catch them at the end of the session but it gave them a chance to see what i wanted to ask before i actually grabbed them and it seems to have opened up the lines of communication far better than anything i have tried since September.

i have caught them on a few occasions to try to get answers from them and been brushed off. not sure if its the writing them down or the fact that having them written down made me feel more confident about being a bit pushy and saying i expect answers to these questions but they've said a few bits and given a few recommendations as well, about taking things she does at home in for them to discuss with them as it gives them a context to work from that is easier. They have said they will write down some answers for me by the end of the session so and then tonight i will gather my thoughts for the SALT then again tomorrow afternoon for parents evening, busy week but feeling a lot more positive so thank you all.