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

eandz INPP here

eandz If you go to the website you can fill in a initial online questionairre and then if you "tick enough boxes" so to speak you get sent the main questionairre via e mail. I faxed the questionairre back to them yesterday and the founder/creator of the INPP programme - Dr Blythe - phoned me this morning.

Had a chat with him, as he wanted to ask me some more questions re ds1. He thinks that the programme could help ds1 and wants to do the initial consultation himself so we are going on Weds next week. As far as I can work out, the programme is simialar to OT excercises but also with auditory tests/exercises.

We have an appt with the private paed on 14th March.....just need to go and get a referral letter from the GP which I will do next week.

Been busy havent I?

We are in the same boat with funding stuff. Dh gets a bonus every three months, so we try to squeeze some out of that, although truth be told its usually already allocated at least three times over. Other than that, my lovely Mum has also offered to lend us some.

Re what to tell him about assessments. I had a chat with ds about what things he felt he found difficult and what he'd like some help with. That went along with the - we are all different and have different strengths and weaknesses - chat. Then I told him that the people we are going to see are going to try and work out why he struggles with those things and what they and we can do to help him. I told him they just needed him to be himself, there was nothing to worry about and he wasn't expected to perform or achieve anything as they wanted to get to know how things really are for him rather than seeing him at his very best and on his best behaviour.

Ds was fine with that and relieved that someone was listening and there was the prospect of things improving for him.

We had a meeting with all the professionals involved just after his assessment and the agreement was that he wasn't ready to be told about his diagnosis - for various reasons. Unfortunately, someone then let the cat out of the bag (relative, not professional). He took it really well though, we had a repeat chat about strengths and weaknesses and what having AS means to him and who it was and wasn't appropriate to talk to about it. Then we read some excerpts of books about AS on Amazon and he chose which books he'd like us to buy to read together. He said it has helped him to know there is a reason why he struggles and why he is different to the other children in his class, as now he feels like its not his fault. I'm so proud of him for reacting in such a mature and measured way, especially when emotionally/psychologically he is at least a couple of years behind his peer group.

My dh struggled for a long time and absolutely refused to go for assessment or even to the GP for advice for quite a while. It was only when we actually did start speaking to professionals that he realised how hard things are for ds and that our being in denial was actually making it worse for him. He's not actively involved in most of the appointments etc, but he's supportive and comes along for moral support at least. I'm the one that does all the research, arranges the appointments and does all the pushing, fighting, talking, shouting and occasionally crying. He tends to sit there and make notes, which is a bit like having my own personal minute taker - so useful in its own way.

Still very of your mop!

14th March! I'm very impressed - you are really forging ahead with all this stuff.

becaroo

I just did fill out the form and ticked 7 boxes exactly.

why do I need to fax it back? can't they just have access to the form from their site anyway?

Eh, wonder if they have anything similar in London. 

moosemama

thank you for the link, very useful!

everyone

don't even know where to begin with my thread. i think i need to seek counseling--just too much in such a short time. my head is spinning.

eandz do you have a thread already? If so, point me in the right direction.

Sorry, I'm very vague at the moment.

eandz Thats just how I feel at the moment...like the world is spinning too fast
There is a similar place to INPP in London called (I think) Sound and Vision?? I will double check for you...hang on!

moose Thanks for that...will have a chat with him this weekend.

yes, i just revived my old thread by adding to it. i'll post a link to it in just a sec!

dreaded thread

my current thread is incredibly diluted right now. i haven't the energy to post every single detail-- but there are other threads that do highlight my plights and ds's behaviour. perhaps i should set up a directory on my own thread.

eandz

Sound learning centre
hemispheres

Google "retained reflexes"

(sorry too dense to do links)

;) it's okay. sorry i keep hijacking your thread.

eandz

Hijack away, honey x

Hello again. You have been busy. Don't really know about community paeds. We were lucky enough to be referred by the HV straight to a specialist developmental paed. She was excellent (and free) and DXed DS2 really quickly. Suppose that meant he wasn't borderline! Good luck with it.

eandz, have replied on the thread you linked to. Not sure how much help I am though.

I have replied too eandz x

thanks girls! i know my real buddies are. :)! xx

Becaroo - I found what really helped was employing and independent Ed Psych.

If you can scrape up £300 or so it really helps - I think it speeded up my DS2's statement by 2 years.

I could be wrong.

We have an appt for a physio for DS2 soon but all his back pain (proprioreceptive poor feeback) (can't spell it) has gone due to us getting a dog and long walks and DS2 losing a little weight (not fat, just tiny bit chubby).

We still have the appointment. I juat feel it will be a waste of time but don't feel I can turn anything down.

I know what you mean about not turning anything down whatever We are going to see a private paed but will still see the comm paed too whenever we get an appt.

After all the appts over the next week I have a meeting with the school so will see
a) what the paed and therapist say
b) what the school think about it

Hi all, back again!

Just wanted some advice re: my with ds1 appts over the next week...

On weds were are going to INPP - do you think it would be a good idea for me to write down ds1s issues since birth - timelines and all that sort of thing - so I dont get confused/upset on the day?

Am going to get a referral from the GP tomorrow fro the paed appt on monday.

Hi Becca

Definitely a good idea and will probably be asked for anyway by the paed (at least we were asked). I keep a copy on my pc and update it term by term, so I always have the latest version to give to any new professionals that might become involved.

The assessment centre said it was a really useful document and worked well to back up all the questionnaires etc.

Ours is a comprehensive report style document with an index, mainly so they can jump around and only look at the most relevant parts to their specialty if they want to. I then broke it down into a more succinct, sort of prompt list for me to use myself during the meeting.

Good luck x

Thanks moose

Will keep you posted! x

Hello again....

Been talking to ds1's HT re; the help ds1 is receiving at school and at the moment he is just being "observed" as he hasnt been at the school very long (3 months).

She says that he will probably be put on "school Action"....can you tell me what that is and what it will mean in practise?

I know I could google it, but that will only give me the definition and I know you guys will tell me what it really means!!!

Thanks x

School Action means very little in a lot of cases.

Basically with regards to the Special Education Needs Register, first there is School Action, where the school has identified specific needs, which they will try to address internally, either through extra sessions in a group with other children or with some 1 to 1. To do this they should create an IEP (Individual Education Plan) for your ds and best practice is for this to be done at a meeting involving yourself, the SENCo and any teacher that have regular teaching responsibilty for your child.

The IEP should list the identified problem areas, how the school wants to address them and what support they will provide to make that happen (ours also includes a section on what they expect from the parents and the child themselves). The targets should be SMART, which is Specific, Measurable, Achievable, Relevant and Time Limited. All this means is that they should be something the child should able to achieve with extra support and should be clearly identified and able to be monitored in terms of progress and achievement. (So for eg, ds will have asked for help from the teacher X number of times across X number of lessons - rather than just ds will learn to ask for help.) The IEP should be reviewed 'at least' termly by the same team of people listed above, but can be reviewed sooner if any of the people involved feels its necessary.

In reality School Action can often be a waste of time, hence the reason IEPs are often called Individual Empty Promises on MN. There is no legal requirement for the school to supply the support outlined in the IEP. They only become legally bound to provide support once a Statement is in place.

If after a couple of IEPs the child doesn't appear to be making progress, he can be moved onto School Action Plus (SA+), where the school brings in outside help to assess and support him (eg Ed Psych, SALT etc). In some cases, such as my ds, he was shifted up to SA+ because I brought in the Ed Psych and Inclusion Team myself and because he was going through assessment with external professionals - he had only had one IEP at School Action prior to moving onto SA+, because the school was refusing to see his additional needs and I'd been fighting to get them recognised.

If the child then doesn't make progress, the school should go for Statutory Assessment for a Statement of Special Educational Needs. You don't have to wait this long though, as you probably know, parents can apply directly to the LEA for Statutory Assessment themselves.

Sorry, that's quite a wordy description - you would probably have been better reading this which actually sets it out quite well for a government website.