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84 replies

Becaroooo · 02/03/2011 19:22

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

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. Sad

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 Smile 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

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Becaroooo · 08/03/2011 14:07

Thanks moose you have helped me understand it all very well Smile

ds1 had an IEP at his old school. We only found out about it at the parents evening after ds1 had been in year 1 for about 6 weeks when the teacher informed us he was struggling and mentioned the IEP.
Didnt know anything about it, never had a copy of it and AFAIK, it was not reviewed often (if at all) Angry

I am a bit Hmm as to whether they are worth the paper they are written on tbh. ds1 is supposed to be having 30 mins 1-1 a week atm with a reading recovery teacher and its just not happening...she is off sick (which is fair enough) but there does not seem to be another teacher who does the job when she is not there. sigh.

Am hoping that, what with getting ds1 assessed at INPP tomorrow and by the private paed next week the school might put him straight onto school action+ which will at least get him seen by an EP.

The next few weeks are going to be really hard, I think Sad

Thanks for replying to me - again!!! Smile

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Becaroooo · 10/03/2011 10:48

Hi guys.

Quick update on yesterays appt at INPP.

Went very well. They assesses ds1 and lo and behold he has many retained reflexes. she also used the terms "dyspraxia" and "APD"

We are going back in 6 weeks and we will get the report from yesterdays assessment and he will have a hearing test for APD.

He is also being referred by the GP to the Comm paed.

Thanks so much to all of you who have taken the time to reply to this post. I cannot tell you what it has meant to me x

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Becaroooo · 10/03/2011 10:50

...oh, and the school will probably be putting him on school action after we meet after the easter hols.

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moosemama · 10/03/2011 11:16

Hi Becca, glad it went well.

Will they be working with him to help with the retained reflexes or will you get some exercises to do with him at home?

I'm a little Hmm that the school is waiting until after Easter to put him on School Action though. If they've already identified a need or problem they should really be acting on it now rather than waiting a few weeks.

Becaroooo · 10/03/2011 11:36

Hi moose

He has exercises to do every day at home. Takes about 4 mins. He will have his hearing tested next time.

The HT wants to see a copy of the report we get when we go back, which is fair enough. HOWEVER, she said this morning that, since I orginally spoke to her and outlined my concerns last thursday, she has been watching ds1 and has seen for herself that he has "issues" so I feel now that she and his teacher will be watching him closely up to easter and that they may even put him straight school action + (which is what I really want) after they have observed him and read the report from INPP.

So, all in all, I feel quite positive today.....probably wont last!!! Smile

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moosemama · 10/03/2011 12:17

That does sound positive, everything's heading in the right direction.

Hopefully your ds will soon have lots of support to help him overcome his problems and boost his confidence.

Well done for being such a proactive Mum and getting things moving.

I've just been chatting with the lovely EP that ds1 finished working with last week. He has made a couple of very subtle but significant development leaps over the past couple of weeks and she was so genuinely delighted for him that it almost brought a tear to my eye. [soppy Moose emoticon] It restores my faith that there are some truly fantastic professionals out there who really do want the best for our dcs. Smile

Becaroooo · 10/03/2011 13:56

Thats lovely moose Smile

Am hoping now that ds1 is in his new school and now that the process of getting him assessed has been started that things will improve for him - and all of us!

No doubt I will be back posting soon about something else though! Smile

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EllenJane1 · 10/03/2011 14:06

That sounds great, becaroooo. It's horrible when nothing seems to be happening to improve things. Let us know how it goes.

Becaroooo · 10/03/2011 14:15

Will do ellen

Thanks so much for all the help/advice x

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