Developmental disorders/learning disabilities/genetic syndromes & more support group

[sequeena]

This is my FB you should be able to add me

 

[bananabump]

Deleted

 

[moggymay]

Ho hum I feel a little of a fraud still being here now Pickle was assessed a week or so ago by SLT and they are mega impressed with how he has come on, the explosion of words since he turned 3 has been amazing and they now assess him to be "at an acceptable range for his chronological age" which means were he assessed today for the first time they would deem him to be ok to leave with no specific SLT support. Due to the fact they have been working with him for nigh on 2 years they are keeping him on their lists but not giving any specific therapy or support only monitoring.

I feela fraud asking this because I know we are lucky to have seen the improvement and for the fact he is catching up and is level with his chronological aged peers. However my concern remains because he is only 22 days short of the next school year....were he younger by those few days he wouldn't be starting school in September, if this were the case I would have no worries or concerns regarding him catching up and being able to learn and cope with phonics etc and learning to read. I am full of what ifs but SLT say it isn't a worry until he can't do it....surely once that happens we then will be waiting again for our turn for help. I know and accept the list is long but I am really worried all the good work we and he have done mean he will struggle if the support of his key worker is withdrawn (SLT don't really do much other than support his pre-school key worker and SENCO as it is they who carry the load and work with him and us).

I am not expressing myself very well here but is it ok that he is with his chronological peers an ok point to cease support given his school group peers are 95% older than him....I know this will always be the case in terms of age but these years are vital in establishing his basic learning blocks.

What would you do? I have asked at the school if it is possible to meet with school/pre-school/ourselves to discuss and as they know us (we have an older child already at the school in the SENCO's class) they have agreed. Do I push for the SLT to attend the meeting if we get one?

To go from being behind to level is amazing and I am so proud of him just I worry if we take the support and bring about the change of pre-school to Reception will the momentum drop and he fall behind again.....I am finding it hard to just watch and wait and see

 

[RachA]

I can understand your worries as I too wouldn't want my child to drop behind sgain. You obviously know the school so know how they work. I know with my sons school they do a lot of small group work based on ability and they really support those that really need it.
I'm not sure if SLT really need to be involved once he's at school but it would be worth setting up a meeting with the relevant people in the SLT just for your peace of mind. You should be able to keep things that are in place now in place in the school setting. I know that in our area all schools use the first half term to assess each child and see what help they need. You will of raised flags already so they should keep an extra eye on him. I don't know for sure but my assumption would be that if she's caught up he shouldn't fall back again.

He starts this Sept doesn't he?

My son wasn't behind but he was also an Aug birthday and when he started he basically knew nothing - he's just about on target now but then he is a slow learner.

 

[Misstrouble19]

my son is also a slow learner.. but then again so am i so that may explain the way my son is... but yeah good to hear your sons in front now but if your concerned then go back to SALT and explain to them they can't refuse to help you or mention to your health visitor x

 

[sequeena]

Moggy I agree with everything Rach has said. I'm so so pleased for you you must be so proud!

Thomas got a magnetic fishing game from portage today still working on a 3 piece puzzle and shape sorter. We're getting there slowly

 

[Tiff]

Claire has a late birthday too (Dec 19th) and we opted to keep her out of JK as she was en route to a diagnosis and we didn't want her to start the school year without an IEP in place. We instead sent her to an inclusion pre-school for two afternoons a week.

I can understand your worries though hun! RachA gave some great advice.

 

[moggymay]

Aw thanks ladies. A lot of his progress has come from the mystery story bags and the alphabet bags that our initial group SLT/portage lady put us on to whilst we were on the waiting list for 1-2-1 sessions. We still do them for the letters he is less clear on; and for words of animals he needs to say better if that makes sense?

My older son is a July baby and has had no real issues with school, but I know other children who weren't able to get the phonics thing and fell behind in the beginning are still that little bit behind in the literacy areas now in Y2....but what of that is due to parents not putting in the time reading with them I don't know We were set a number challenge with school ages ago whereby they would give the child a certificate for every 25 reads they did at home so effectively it meant 1 certificate a month provided the children read most days of the week - a read is 10 minutes reading aloud an age a reading level appropriate book - certificates are being issue to children today who have reached 200 reads and there are still others who are yet to reach 25 Sadly school can only do so much. Makes me realise how lucky all our babies are in this group because they have parents who realise and accept we have to help our babies and to fight for outside support when they and we need it.

In a way I am hoping to be able to post in 6 months time that we don't need SLT support anymore even in the nominal sense. Wish it was made more aware that the "averages" of when and how many words a child has means some won't get those words until the very end of the age range as Jack's speech literally exploded after his 3rd birthday but since 18 months I was stressing he wasn't speaking enough as he had done the "average" thing from the get go with everything else.

My little boy who when I first posted was delayed in speech and still in nappies and asking to be fed is now chatty, toilet trained day and night and can ride a bike on his own....just need to teach him better brake control

Thanks you for being here ladies

 

[annanouska]

Salt assessment went a little worse than anticipated. Based on his regressed level where has Been for some months he is between 12-14 months behind for speech and communication

The salt lady suggested his play was behind too but not sur that's her remit to advise really?

She wants to leave him under care of his paediatrician and a speech lady will be coming to our house. We are on a waiting list for sign a long which may be around September. I'd like to start sooner but can't find much about it.

Somebody will be going to his nursery to see how they can help

Autism was mentioned again, I'm frightened tbh. Although he's behind he's still funny and animated I'm afraid he will loose it all and become distant and vacant but I've not masses of experience with autism so I know it does vary

She gave us leaflets they were very pointless as ey all had activities that need the child to have atleast some words, nothing to help him who can say daddy and hiya

 

[sequeena]

Moggy you must be so proud of how far he's come I'm so pleased for you both x please keep popping in to let us know how he's doing

Ann 12-14 months sounds like a big gap but try not to panic. T is somewhere around 15 months behind (probably a little more now) but with the right support they can rapidly catch up.

As for autism being mentioned try not to worry until they are seriously considering it. For now work on building up his vocabulary and signing. I learn makaton signs off the internet and teach them and it's obvious but keep talking. It hasn't really helped Thomas with new words but I live in hope. I don't think he'll suddenly become withdrawn as you say there's a huge spectrum.

AFM I had a random letter this morning from the child disability team saying they're doing a visit this Wednesday I rang them and found out that the community nurse and disability health visitor will be coming out. I had no idea why... then she said the referral was from July 2013

Honestly I don't think they can do much for us but it's good to meet everyone involved with Thomas. I think I saw the HV at nursery on Monday but she was there to speak to another mother. The HV said she can help with things like sleep and oh is your son potty trained? No... Well we can help with that too. Yes good luck with that he's not even aware of his bowel movements oh they do make me laugh at times!!

If I'm ranting here on Wednesday you know why

 

[bumpin2012]

Annanouska. Its a scary diagnosis (G was evaluated) but remember that the spectrum is huge, and many kids who fall on the spectrum are funny and animated.

We were finally seen by Speech, and will be seen monthly for assessment and strategy planning. We are also looking into a pediatrician to follow G's progress. We are being seen at the clinic at the hospital, but I can't just make an appointment outside of the monthly clinic. Our GP office closed and left both myself and G without a dr. Because of Miss J, I was able to find a GP to take her and I on, but still have no one for G.

 

[nicki01]

Annanouska Try not to dwell on whether its autism, it sounds scary and to read about is hard but as someone already said the spectrum os huge, my daughter was diagnosed as autistic in November but she is still the cheeky little devil I had before!
It hasn't changed her, she is still a massive drama queen, the funniest person I will ever meet and has THE biggest character. Whilst she does have distant/vacant moments these are minor when you look past them and instead at how wonderful she is.
Its just a word, a label, an explanation of there quirks and struggles.
I'm still scared of the future but your little one will always have that character, because you know its there, you will see it.
Sorry I've rambled on a bit there! Just hate to see people afraid of autism, whilst it is hard going at times and very unpredictable its just a word really, the diagnosis changes nothing really, it puts support and help in place.
Hope that's a little bit of reassurance if you got to the end!

 

[sequeena]

What can your child say/do/massive brag threads... hate them but I'm always drawn to them.

I must really like torturing myself

 

[annanouska]

Me too sequeena it's hard esp when they moan at 18 months they only have 40 words!!

What has everyone's children done recently?

M tried to wave today. He also coped in a crowd better. He got upset and distressed but not a complete meltdown. X

 

[sequeena]

Well done M

I can't think of anything specific that Thomas has done recently my brain is feeling a bit fried it's been so hot today.

Today was my cousin's 5th birthday. When asked what he wanted to do he said he wanted to eat out so we went to our local family friendly restaurant. Thomas always enjoys being round his cousin's but now they're getting older they don't really want to play with Thomas Thomas doesn't care and I know they're only children but it upset me

Also today was the first day that I had to explain to a child that Thomas is a little different. It was.... interesting.

 

[annanouska]

shame about the others not wanting to play with him. It does happen with all children but hard when you know it's harder for your child to gt along anyway

I've had to explain to parents but never another child. Children lack the awkwardness so ask a lot more questions but tend to be more accepting on the whole i would imagine.

It is sooo warm isn't it? We have been playing in the water tub in the garden, he loves water.

Do any mummies here have bed issues? I know t struggles with sleep we seem to be alright Ish once asleep but seems so over stimulated to drop off its a big fight. We wind down have quiet time etc dark room but nothing really works then its up at crack of dawn again

 

[sequeena]

OMG yes T is like the duracell bunny there was a period of time where he got better but now he's back to being a shit. The other day he was up for 16 hours.

The weirdest part is by 8pm T is ready for bed. WOOHOO! However an hour later he's up... then he's up again... and again... and by the time 10pm rolls round I'm ready to chuck myself out the window because T thinks it's play time. I can get him back down between 12-1am which is better than 3am but my God I am so freaking ready for this kid to sleep through. I know now his separation anxiety probably has a lot to do with his horrific sleep but I do think that he needs melatonin... not just for sleep but to just calm him down as he looks like he's on crack 24/7 next time we see his pediatrician I'm going to ask. She only refused last time because of his age. I am not doing sleep clinic. I don't believe in CIO and T reacts very badly to it.

 

[RachA]

We started Esther's next block of ST last Thursday. She is consistently understanding on a 2 word level now and they are going to check her 3 word level this week.
I'm really frustrated though. Since she was 2 & 3 months her ST has been 6 weeks then a gap of 5/6 months then another 6 weeks etc. they are now changing it and are offering children 6 weeks in then 6 weeks off etc. it would of been so much better if Esther could of had it like that from the start!!! The good news is that they will keep offering her the ST at the clinic even when she's at school


Been feeling really down about everything for the last 4 or 5 days. It's getting closer to her starting school and I just don't know how's she's going to do it. All I can see is that by the end of reception the majority of the other children will be able to read a bit and write a bit. And unless a miracle happens there is no way she'll be able to do that. The only thing she can draw at the moment are scribbles and the odd circle! And she doesn't recognise any numbers/letters.
So many things are becoming obvious to us-she'll be entitled to the free hot dinners but I can't out her down for them at the moment because unless she has an adult there to help her she won't be able to eat it. We've had to fill in a load of forms to take to the school-we've signed them but we are going to have to talk to the teachers about some though. There are things like school trips-if she doesn't have someone with her she will just walk into the road or run off! And we has to sign a form to say she's allowed to use the school computers etc and she'll take care of them-she wouldn't have a clue how to take care but if we don't sign the form she won't be able to do any computer stuff.

I guess I'm just feeling sorry for myself at the moment and worried about the gap getting bigger. I'm worried that she's going to be seen as the 'odd' kid who doesn't get invited to any parties because she can't talk to the other children and who wants a child at their party that doesn't talk etc.

The only good thing at the moment is that she's been approved for being considered for a Statement and her SENco isn't having to go to panel to fight for this which means they consider her 'bad' enough and do a statement is more likely.

ETA: also took her passport form to the post office today to do a check and send and they said they might not accept her photo as she's smiling in it. Pre 4/5 they don't mind but as they get older they don't allow smiles. I had to say that there is no way I can get her to do a neutral face because she just doesn't understand - it was hard enough getting a picture as it was as she wouldn't look at the camera. So I've had to use my 'she has special needs' card for the first time and it's made me feel awful.

 

[moggymay]

Rach there is a child in DS1's class who has a full time TA just for him and to support him in school, he is statemented (I am not sure exactly what for) he is in class with them and plays with them at breaktimes, eats with them at lunchtime he just has support just for him throughout the day. At lunch there is a person to cover his TA and they are there to support him with whatever he needs.

He is one of the most popular children in the class purely because the children see him as "X" to them X is their friend who likes shapes (obessively likes shapes) he is prone to meltdowns but they accept him and the meltdowns and don't stigmatise him for it as to them it is just how X has always been. There is a little girl with a lazy eye, she sometimes wears a patch but the kids don't even notice. Whereas to an adult we notice ginger hair, skin colour, glasses, mismatched clothing etc a child of 4/5 doesn't know to do this unless they learn the behaviour from someone else, bullies are rarely born that way they learn the behaviour from someone or somewhere.

Esther will have your support and love 100% and so long as she is happy in school she will learn and she will cope, your job is to ensure she has the support she needs to make her happy and then she will start to learn. I am sure you found with your son that the key thing is parental support - be it reading to them and with them, drawing and practising shapes and lines and later letters and numbers with then, you have to be there and behind her. It is my biggest bigbear at school when parents don't support their children in their schooling, she has you so she is already on a winning path

As for school meals the consensus amongst many of DS2s peers is that they will be having packed lunches as we aren't sure they would eat the meal options except on a friday when it is fish fingers! A friend of mine is a dinner lady at school and if you notify the school that your child is a slow eater or needs assistance with cutting up food or similar then they will go out of their way to help - there is even a slower eaters table at our school, DS1 isn't aware of it but staff and dinnerladies have confirmed it is there.

In terms of the school computers, I doubt they will be too complex or valuable, they are quite hardy and letting her join in will help her. So long as they know she is respecting them as much as she can they can accomodate and adjust their expectations and supervision accordingly. Have you got a meeting date with the school to discuss your worries before she starts? Maybe even before the traditional meet the teacher just a meet the school head/deputy head/senco to help you get your head around how best to work together to help Esther.

 

[annanouska]

don't think I could add anything to what has been said

I did write lots but it didn't seem very helpful