hand holding for a long time lurker please :(

[Becaroooo]

This could be a long one..............

My ds1 is 7. He is a kind, sweet boy, an orange belt at karate, is learning to swim and is a member of the local Beaver pack. He enjoys watching his dvds (mostly top gear and david attenborough ones) and riding his bike. He is a great brother to my ds2 (aged 2.5)

He had undaignosed IUGR as a baby (was 4lbs 15oz at birth but received no special care) and therefore had significant developmental delay...didnt sit up unaided til he was 9 months, didnt talk til he was 2.5, was very floppy baby, poor feeder etc etc

He had prolonged jaundice too and - eventually! -the HV listened to me and sent him to the GP...cue rush to hospital and a week on IV ABs.

They thought he had CP (we were told one week that he could be deaf and blind) but after the IV ABs he started to feed and slowly gained weight and strength. He never met his milestones but did it all eventually.

I think that, because he didnt have CP or a similar major disability, I have just tried to put his early issues to the back of my mind and I have never made a big deal of it. I have not wanted to relive those terrible first months I suppose.

However, it is becoming clear to me that I have failed my son badly. I can blame the GPs, HVs, hospitals and schools as much as I like but the buck stops with me.

Ds1 went to pre school at 3.3. He wasnt ready. I knew that but I was under a lot of familial pressure to send him;
"he will come on leaps and bounds"
"he needs the social interaction"
etc etc

Anyway, after taking some time to settle he did start to enjoy pre school. Reception which he started at 4.5 was ok too, albeit he got very tired.

Year 1 was a DISASTER. Within 4 weeks he came home and told me he had a "stupid brain". He got increasingly unhappy. At the parents evening his teacher said he was "struggling" but when I asked what I could do to help was met with a blank stare....he was assessed by the SENCO at my request and she said he was a summer baby and would "catch up". She referred him for SALT which was a surprise as his vocab is amazing and when the SALT came it was a bit embarrasing as there wasnt really anything to do!

After ds1 started showing signs of clinical depression at xmas 2009 I took him out of school and home schooled him for most of last year.

He went back to a small village primary last november and he has settled in well and enjoys it...it is much more child led/less concerned with SATS..

It was parents evening yesterday. ds1 is well behaved and happy BUT is still struggling.....he cannot read or write very well (ORT stage 4) and there are some behaviours which, whilst I am used to them, I am realising they are probably cause for concern...

He "prances" (well thats what we call it!) and walks on tip toe a lot at home...more so when excited. He also has quite jerky arm movements at times too. He can get very anxious.

As I type this he is watching one of his Top Gear dvds and "prancing" up and down the room on his tip toes....he cannot seem to sit still.

He sees a paed twice a year due to his asthma and excema and I have mentioned these things to him but he dismissed my concerns.

Because he is a "good boy" (forgive the term) at school I think they dont think he has a problem. He also doesnt do tip toe walking at school AFAIK.

I have had some great advice from indigo and I am going to go to the GP and get him a child development paed referral. I am also going to look into some other therapies.

What else can I do???

Thanks if youve got this far!! x

your a good mum Becaroooo doing a darn fine job in very difficult circumstances we understand how hard it is and i totally agree with indigo the ref is your next step, just wanted as you mentioned Jolly phonics and reading and handwritings my DS worst areas has the school or anyone mentioned RUTH MISKIN,synthetic phonics to you you wouldnt believe my DS was so far behind and he went on the ruth miskin method which he suddenly as if struck by lightning really GOT IT see this link:
www.ruthmiskinliteracy.com/

he now has gone from reading the very basic biff chip and kipper to when he has his assesment books for his correct age heas nearly 11 hes on books for age 10.5 im so please and it only took about 6 months our middle school changed all the children with SEN onto this method and it has worked wonders for 90% of the children im gobsmacked with it

Becaroo - your DS sounds a lovely little boy and this is down to you, so you should be very proud at the job you are doing.

Please don't let the school fob you off with the gaps in his knowledge line. I did. My DD's worst problems are with maths - she is dyscalculic. At the last school I kept being told she had gaps in her knowledge so I kept doing work at home to try to plug them - surprise, surprise to no avail. Do get your GP to refer for a develomental assessment and apply for a statutory assessment yourself.

Don't lose heart as a little bit if help is likely to make a considerable difference. My DD has significant problems with her working memory and information processing. As such, despite being a good reader her literacy skills were very poor. The new school are giving DD self esteem classes and exercises to improve her working memory. In one term she made 2 years progress in this subject. 6 months ago I would never have believed that she could do this. In her previous independent assessment she wrote 2 very poor sentences ; at the end of the autumn term she wrote a page and a half in A4 in pen and paragraphs!

You say he is good at maths - encourage the school to reward him for this. If you can find anything out of school encourage that aswell. We recently discovered that DD was a natural at tennis (she had a couple of private lessons on holiday with a coach who told us this). She was so pleased with herself, we are continuing her with tennis locally. (we were amazed to discover this as she is very dyspraxic and has a lot of motor co-ordination problems).

Sorry, am so new to all this and a bit dense...what is a statutory assessment? How do I apply for one? do I do it through the school? He was assessed by the SENCO at his old school almost 2 years ago (I pushed for it) and she said he was a summer baby and would catch up. He hasnt. She also referred him for SALT he didnt need...I think it was just to shut me up tbh.

He has been assesed by the SN teacher at his new school (not the SENCO) and she was the one who said she had "no concerns" but that there were "gaps".

His teacher is nice and I do feel I can talk to her and the HT...would that be my next step?

I have sent off the questionairre re: NDP therapy so should hear back from them next week.

sigh....feeling pretty low today, but better for your support x

becaroo

DH eventually made it to Oxford and did a math degree...so it turned out pretty good. He also remembers coming home from school as a younger boy and not being able to tell his mom how hard things were for him. If he had a better relationship with his parents as a child he would have gotten help a lot sooner. To this day he can't share his feelings with them. Although, they are nice-ish. I think his parents were very occupied at the time with a large load of burdens and he just wasn't enough of a priority.

Becaroo, where has the school assessed your DSs needs to be at the moment. Is he on 'school action' where the school make out an individual education plan with SMART targets with progress to be reviewed each term? SMART just means specific ie not woolly ( improve his social skills is woolly, teach him in a social circle of friends to say, "will you play this with me" at least once a week) measurable ie can they measure progress, achievable ( in a term so not unrealistic) repeatable and .... T? can't remember, sorry.

That's the first stage. After that comes school action + which is much the same with some outside help from Ed psych or SALT or OT or LA advisory teachers.

If he doesn't make satisfactory progress the next stage is Statutory Assessment for a Statement of SEN. You need to google SEN code of practice for lots more information. Sorry, on phone ATMo.

If you as a parent are really unhappy with his progress you can shortcut the process and apply for Stat assess now. But if there isn't enough evidence of problems or lack of progress you may get nowhere fast. Start to keep a written record of all your concerns, all the meetings formal and informal with teachers, doctors etc as evidence. Read the SEN cod and find out from the school senco what stage your DS is at. HTH and keep posting for advice.

I would definitely query with the school whether he is school action / plus. My DD was SA plus at her old school but we never had an IEP. Maybe you could request a meeting with the SENCO which somebody from Parent Partnership could attend with you. They should also be able to give you a bit of advice on this.

Info on statutory assessment on IPSEA website including letter to start the process. It does not matter if the school don't see problems - I mean it makes it more difficult but its not always a dealbreaker.
You need to download and get a hard copy of the SEN code of practice.
You can also refer directly to the educational psychologist.
All schools have one attached to them - you could ask the school for your child to be assessed on the next visit but also contact the service directly and request an EP assessment. EPs are the experts in what educational help a child needs (allegedly ).
You should get an EP referral if your request for statutory assessment is accepted but I'd request it direct anyway.
As the school do not appear to be doing all they should at school action / action plus (all explained in SEN COP) it is quite possible your request for stat assessment will be refused - if so just appeal it. What should happen as a minimum is the SEN Officer should put a rocket up the school's backside to ensure they are doing everything they should be doing at action plus so a statement is not needed.
My advice is always to just plug away for a statement and appeal anything you are not happy with because it takes at least 6 months to get to tribunal and if you are made promises about statements not being necessary they will have 6-8 months at least to prove that to you before you get a tribunal date so always always push it to tribunal as you can always pull out but if they fob you off without a statement you have to start the process all over again if the promises turn out to be of the rather empty variety.
If you have funds you can also get a private EP to assess.

Hi. Thanks for all your replies. I really appreciate it.

Had a busy and upsetting day....

Saw ds1's HT and have briefly outlined my concerns and the result is that dh and I have a meeting with her and ds1's teacher next week. I have explained that we are happy with the school and that ds1 has settled in well but that there are issues from his early childhood they need to know about and that he is showing behaviours at home that he does not show at school. She agreed we all need to sit down at talk about it.

I have also seen my GP this evening and requested a child development paed referral (I should point out that this was not the GP/surgery that ds1 and I were registered with when he was born so he doesnt know/didnt see a lot of the issues ds1 had as a baby)

I dont know what I expected....but I was not prepared to be listened to!!

He listened as I explained my concerns, was nice to me when I cried and has made me feel that someone actually takes me seriously for once.

I told him that I felt I had allowed myself to be "fobbed off" by "experts" wrt ds1 in the past and he smiled and said
"there is only one expert on ds1 and she is sitting in front of me!"

He is referring him to the Community Paed (I think - he is going to talk to a colleague who deals with the developmental issues).

He also said something which has had me crying - on and off - since 4pm

He said that, from what I had told him of ds1's medical history, a lot of his issues could be caused by the prolonged jaundice he suffered as a neonate. I asked what he meant and he told me that prolonged jaundice can cause some brain damage and that its irreversible.

My poor, poor boy

Sorry, am crying again......

leonie

AFAIK he has never been diagnosed with anything. I had to fight to get the HV to admit he was still jaundiced at 6 weeks old.

He went "under the lights" at 4 days old (when he was readmitted and had the NG tube in) but it obviously didnt work/help.

He was given IV antibiotics for a week (at 6 weeks) and his feeding improved - albeit slowly - after that.

My dnephew was a 27 week prem and he was healthier than my boy

I'm sorry you've had such a hard day, Becaroo. It sounds like such a shame. You need some time to be upset about all this. Once you are feeling better and up to it, (in a few days maybe) then remember life goes on and get on to the next hurdle. What's happened has happened and it wasn't your fault. Your lovely and loving little one is the same today as he was yesterday. And you are doing all the right things to help him.

Yes you are both right.

At least I have set some things in motion now......

I am looking through the new lakeland catalogue leonie (its my version of porn!!)

Thanks for the sympathy.....tomorrow is another day and all that

........I have decided.

I am buying a steam mop.

So there.

Is it Friday yet? I go away for 5 minutes to take DSs swimming and everyone's talking steam cleaners!

heh heh sorry about that ellen

Can I ask a question? I have mulled it over last night and, although I am happy to for ds1 to see the community paed, I am wondering whether we could/should pay for a private child development paed referral?

My GP is on hols next week - typical! - but I can get in to see the other GP that deals with developmental issues and chat to her.....what do you think?

ok....sooooo....

Have got an appt. with INPP for next week.

Am looking into a private paed referral too so we dont have to wait for the community paed appt as I know it can take ages to be seen.

Anything else I should be doing??

Becaroooo, we went the comm paed route, but would definitely have preferred a developmental paed.

I think you're probably right to pursue a private referral if you can afford it, as the comm paeds we've come across are a bit like higher level GPs, in that they are generalists rather than specialists.

That said, we were lucky with the first comm paed we saw. Our appointment was 6 weeks to the day from the GP appointment and it turned out the paed concerned was attached to the multi-disciplinary ASD team, so had enough knowledge/awareness to say he felt ds would likely get a dx of AS - which he did.

Would it perhaps be worth getting on the waiting list for an OT assessment as well at this point? The waiting list round here can be up to 18 months. For ds1 it was a revelation, someone finally explaining why he struggles so much with writing.

Finally, have you considered eyesight? I always thought ds1 had no problems with his eyes, but we have now discovered that, although he has excellent vision, he has considerable problems with convergence (binocular vision) and visual motor control as well as sensory issues around sight. He's done amazingly well considering he's had to circumvent those problems for all these years, but I feel awful that we didn't know earlier. Apparently the type of eye problems he has can contribute to both reading and writing difficulties.

We went to a highstreet optician in the first instance and it was them that told us his vision was really good, but his convergence was poor. We were just about to book an appointment with Aston University Vision Sciences Dept for a complete assessment, when by chance ds2's consultant optician mentioned that they have a behaviourally trained orthoptist in the paediatric eye clinic and we should ask the GP for referral to her in the first instance.

A good place to find out about visual-motor and behavioural optometry is the British Association of Behavioural Optometrists website. That should give you some idea of whether or not you feel your ds might perhaps have some visual issues contributing to his reading problems. Be warned though that BABOs are VERY expensive. We just couldn't afford the prices to have ds assessed privately - hence having to go the teaching/university route. Mind you, if we could have afforded it, I would have booked him into our local BABO in a flash, as we have heard some really good things about them.

I would love to take ds to INPP as well, but there's no way we can afford it at the moment and I think we've had (and still have) enough appointments to be going on with at the moment.

Oh and by the way, I am very about your steam mop - I've been coveting them for ages, as I'm convinced they'd be the best way to clean my ancient quarry tiles.

(I'm another Lakeland lover! )

Moosemama,

whats INPP?

moose Hi.

Am a bit about comm paeds tbh...I have not heard very good things about the local ones.....

I live on the border of 3 counties and ds1 goes to a school in a different county to where we live. My dnephew has seen the one attached to the school and my dsis wasnt impressed. A friend's ds has been seen on and off for 3 years by another counties comm paed and also isnt very impressed. That being said, the guy we are going to see is on the other counties comm paed team!!!!!

We shall see...

re: funding the tests...dh gets a small bonus from work at the end of this month...thats that spent My mum has also offered to lend us some money which we may have to take her up on. I realise we are very fortunate in that regard.

Was going to book a holiday for next year with the bonus money...oh well.

Dh isnt happy about how much its costing tbh - he thinks that the INPP thing could be a scam (??????) to trick people desperate to help their kids out of their money. sigh. Its just how he is. i.e. bloody annoying I have told him I am going ahead with the therapy and the private paed referral with or without him so its a bit of a fait accompli for him really

Dh did ask me something that made me think, though, and I hope you guys dont mind me asking, but what do you tell your dc when they go for these assessments/tests etc? Dh is concerned and doesnt want ds1 to feel pressured/upset. Any tips?

I think he is really struggling with the idea that there is something "wrong" with ds1, you know?

I cant wait to use my steam mop....I love lakeland