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

...should also mention he had real sleep issues too...as a baby he woke at 4am most mornings and had maybe 1 nap in the day and then was up in the night too.

He still doesnt sleep that well tbh but if dh or I are with him will sleep from 9-6 albeit restlessly.

Hi Becaroo, think you've done an amazing job tbh, he sounds like a lovely wee boy.

I'm not sure what else you can do, the development paed referral will be crucial in terms of ds receiving some kind of dx, I'm not sure what your thinking is around that? Are you querying autism or adhd, something like that?

I suppose with school I would be looking at getting him statemented if he is struggling just to ensure that the school is doing all it can to support him (it's a safeguard).

He's involved in all sorts of out of school activities which is great for his confidence x

I don't have any good advice, but I think you are doing an amazing job too. Keep it up and make sure he gets any extra help he needs xx

Becaroo, please don't feel guilty - he's been failed by the system, not you.

I can relate to where you are. My DD was a healthy baby when she was born. Within 24 hours she became unwell. I called a midwife at 4am (on the maternity ward) - she said a doctor would be round in the morning. I waited - no doctor came. By lunchtime she had a sepsis rash aswell as an umbilical flare. At 7pm (15 hours later) a doctor examined her - threw the water out of my glass and said "I think this is nasty - she's going upto SCBU for tests. If it's sepsis we'll move her to ITU, if not she'll stay on SCBU for IV drugs then home with oral antibiotics. She was taken away for tests and put on IV drugs and we were told she may become deaf.

After 3 days we were sent home , no antibiotics and no notes. At one stage the ward sister came over shut the curtains and said "I'm not happy" but wouldn't elaborate.

She appeared well for a few weeks but at 6 weeks became floppy. Back into hosp where she was diagnosed with tonsillitis, but told babies this age don't get tonsillitis. She had continuous bouts for 4 years aswell as many other prolonged illnesses. At 4 years she had a tonsillectomy. Immediately afterwards she developed epilepsy and confined with other serious illness. She developed learning difficulties.

I wish I could turn the clock back, walk her out of post-natal and down to A and E. I wish I hadn't just accepted their refusal to give us antibiotics, I wish I had insisted on her blood results (which they couldn't give me as the computers were apparently down, but I can't.

She is now 9. From year 2 she was so depressed, telling me she wanted her world to end. Her previous school gave her no support, she was bullied and kept telling me she was stupid and dumb.

We moved area and school 6 months ago and she is so much happier. She is now finally seeing an EP and we will push for a statement, but I feel like I've wasted so much time and feel so guilty at what she's been through.

I can't offer solutions as I'm still trying to find them myself - if I do I'll come back. I just wanted you to know that your not alone.

Can the school Senci help you. The one at the new school has referred DD for OT (she's very dyspraxic) and is also doing self-esteem work with her, which has helped enormously.

Sorry you're feeling so down.

Have you contacted CAMHS? Perhaps they could advise on his depression, and his anxiety. Agree about talking to the SENCO at his new school. And his class teacher too. They need to do more than simply tell you he is struggling, but need to work with you to find ways of supporting him.

Can you keep a diary of events that make him particularly anxious, might be worth seeing if there are specific triggers.

I don't know too much about it, but also might be worth looking into diet (if you haven't already done so), especially re the excema & asthma. Worth talking to a dietician?
Hope you don't have to wait too long for a referral.

You haven't failed him - you have done, and are doing, everything you can to get others to recognise and act on the difficulties you have identified.

He sounds like a lovely boy

Thanks for those kind words

newlife Thats just awful to hear...so sorry you and your dd were failed like that, but I can relate as I also believed HCPs and trusted them. Good to hear she is happier now. Ds1 is certainly happier ay his new school.

Not sure what I am expecting wrt dx tbh...I have never wanted to "label" ds1 but then again my reluctance to "label" him has probably harmed his progress.

I should have also mentioned I have tried several "schemes" with him to help his reading and literacy;
toe by toe
step by step
jolly phonics
headsprout
various online resources
etc etc etc

Nothing seems to help and I need to accept that I cannot help him anymore. I just want to be his mum, you know? Not his teacher or therapist

His new school have assessed him and have said they have "no concerns" but that he has "gaps" in is knowledge.

What do you do when a teacher/paed tell you there is nothing to worry about but you know there is!?

Thats what kills me BSAB (great nickname btw!)

He is such a great kid....kind, thoughtful, loving, very affectionate...if you saw him and his younger brother together your heart would melt

He tells me he loves me about 10 times a day (we are a very lovey dovey family ) and I just hate the fact that he feels "not good enough".

He will never be academic - not bothered about that at all - but I want him to achieve his full potential, whatever that may be....

Becaroo - my cousin, who is in her late 20s, is "slightly spastic" and, as a child always walked on her tiptoes - apparently that was the most visible feature of her condition.

I am using that phrase because I am not sure if it was CP or what but that is what my cousin always said. It was a prolonged and difficult birth but her father was also a "tiptoe".

I have a SN child myself so I am not being "funny" but I think the more labels you can stick to a kid the better - the more help your child gets.

Year 1 was a disaster for DS2 (11 now) too, it is when the learning begins. I changed schools for him and found a school which had a really strong SEN dept and a really strong "inclusive" policy.

In some ways that was the right thing to do as I got the statement that he needed - but I don't believe in "inclusive" schooling any more.

Also, it is very hard to get diagnosis for an SN kid when their condition is "marginal".

My son is also a "good boy" and easy to shove to the back of the class. If he didn't have such a yappy mum. My advice would be to pay for a real diagnosis along the CP route. If you have no resources - there are educational charities in most Boroughs.

Thanks superhans

Is it even possible for a dx of CP to be so marginal it could be missed for so long?????????????.........

Just wanted to add my voice to those who are saying you absolutely haven't failed him. He sounds wonderful in all the most important ways and that's down to you.

I know its not the same thing, but my ds2 has only just moved up to ORT 5 and he'll be 7 in a month's time. (He lost everything he'd learned in nursery and reception year when he was hospitalised with severe pneumonia at the age of 4 and had a year of catch-up and extra literacy and numeracy support during year 1.)

I was told last night that his reading was assessed at 2b when they recently did some mock SATs and that's the level they want all children to reach at the end of year 2 (so 7 years old). As you said, he's never going to be a superbrain, like you, that doesn't bother me in the slightest, but he'll find his own path and I'm sure he'll be successful at whatever he chooses, because he tries hard and he deserves to and because I/we will always be there to fight for and support him along the way - just like you will for your ds.

He used to find it very hard and think he wasn't clever enough (not helped by his elder brother being top of everything at school) but more recently we've helped him realise that he does well enough and his strengths just lie in different areas to his brother's. (His elder brother has AS and therefore a lot of associated problems, whereas ds2 is highly imaginative and creative, very social and loved by everyone he meets.) He currently wants to be an artist and I can really see him doing that to be honest.

It breaks your heart when they say things like "I have a stupid brain" or "I'm not good enough" and its so hard, because nothing you say seems to make it feel better for them.

All you can do is continue with all the things you are doing regarding the referral and keep on keeping on with the love, praise and reassurance.

thank you moose What a lovely post....so glad your ds is better now and has recieved the help he needed x

Becarooo - yes I think it is. My DS2 was always "kind of/half" diagnosed with ASD - I absolutley knew it wasn't. I persisted until I got the right diagnosis of APD - I had been yapping since he was 2 or 3 that something wasn't right and it took till he was about 9 for the correct dx - then all the schooling fell into place.

sorry hans whats apd??? (my brain ceases to function properly after 9pm!)

star What a star you are x

APD = Auditory Processing Disorder - think Spanish kid sitting in a class of English kids. Will get it, but more slowly. I use hand signals, touch and making sure he's watching me.

Basically DS2 has learned English as painstakingly as we learn French, it is not instinctive.

I see, thanks.

ds1's grasp of english doesnt seem to be instictive either....he really struggles.

I get so frustrated with him sometimes which I hate myself for....he seems to forget things we have just covered! His teacher says that normal but I'm not so sure......

No-one knows him better than you. This board is full of parents who had to convince the professionals there was some problem with their child. I think the medical ones are really pushed and don't want to misdiagnose, and the educational ones don't have enough money to go around. None of them have your DCs best interests at heart. That's only you.

You sound like you have a lovely family and are doing everything right. Good luck with it all.

hey leonie

Wow, your dd sounds very bright

Glad you got the dx for ds2...not a surprise for you, I know.

becaroo

you are a wonderful mother and a great friend. i'm sure your support and love for your son has shown him that he can talk to you when he really needs to. just think about those poor kids who have similar difficulties and can't come home and tell their mothers how they feel. The fact that your son can tell you something that he feels so deeply (and wrongly) is something you should be able to see as a good thing. He's come to you because he knows you wont reject him and you'll try even harder to help fix his problem.

My DH couldn't read until he was 11. He went to one of the worst schools in London. While they were testing him for special needs they realized he could do math quite well, they kept testing to see how much further along he was and he tested 3 yrs ahead in math. he was then given an assisted place in the best school London had to offer. They taught him how to read by pattern recognition at first and he only really learned to read a full year after he finally grasped his alphabet.

Your smile and positive attitude will give your son the confidence he needs to be himself. He seems like such a fantastic little boy. :)

DS2 (11 now) has a chronolical reading age in advance of his age - I never thought that would happen. Just hang in there and remember they are "Spanish" and keep going. It clicked on his own for him when he was about 9. I think of DS2 as 2 years younger than he is and treat him that way.

Thanks eandz Its scary how some kids (like ds1 and your dh) just seem to fall through the gaps...ds1 also prefers maths and is quite good at it.

superhans ds1 is quite immature compared to other kids his age. Its never bothered me tbh as he is who he is and I wouldnt change him for the world (apart from maybe the sleep thing!!!)