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Here are some suggested organisations that offer expert advice on special needs.

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Here are some suggested organisations that offer expert advice on special needs.

SN children

DS broke my heart!

32 replies

StarlightMcKenzie · 13/10/2011 18:33

He is excited about his forthcoming 5th birthday (he has ASD).

He said, I will be 5, and then I will be 6 and then I will be 7 and then I will be 8, and when I am 8, I will be good at talking.

I told him he was already good at talking but he got cross and tearful and said he was not clever at it.

These things are always so heartbreaking because the fact that he is aware and able to articulate his feelings about what he isn't good at is incredible and amazing progress, but at the same time, look what it does!

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Becaroooo · 13/10/2011 18:37

Oh star

I really sympathise, really I do.

When ds1 was 5 he came home from school and told me he had "a stupid brain"

It does break your heart.

BUT it is amazing progress. It IS. Try and focus on that.

xx

PipinJo · 13/10/2011 18:43

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PipinJo · 13/10/2011 18:44

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Becaroooo · 13/10/2011 20:38

I think I did pip

StarlightMcKenzie · 13/10/2011 21:32

Thanks Bec and Pip. I was indeed VERY impressed with him for saying it and wanted to jump for joy and amazement, but how can you?

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coff33pot · 13/10/2011 22:51

Awww bless his heart :)

Dont know what to say but yep if it was my DS I would be happy and sad at the same time bless him. Hugs to you x

WilsonFrickett · 13/10/2011 23:56

Och Star. So much of the work is about getting them to link it all up. And then they link it all up ...

zzzzz · 14/10/2011 00:50

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unpa1dcar3r · 14/10/2011 09:30

Oh my days, got tears in me eyes Star...and the others for their children (ZZZZ)
Your son sounds gorgeous to me...and clever bless him.

My boy keeps saying he's stupid when I tell him off for something. He's 14. He smacks himself in the head and goes 'stoop-ed boy stoop-ed boy'...it breaks my heart. I try and emphasise 'No you're not a stupid boy, you just did a silly/rude/naughty thing but you are a very clever boy' but it's so hard to watch.

justaboutstillhere · 14/10/2011 09:34

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StarlightMcKenzie · 14/10/2011 11:19

zzzzzz I know. I really am SO proud of him but not happy that it leads to him getting hurt.

It's so unfair isn't it? That, we are all hoping that our children will eventually be capable of this level of understanding and more, but in effect this level of self-awareness is very sad.

upaid How awful. I hope you find away through that. I'd be beside myself. Poor lamb.

Thanks Justa It's only cost us just about everything to get where we are and in the face of the LA insisting that any progress is either down to them or just natural maturation . Still, we are lucky to have been able to and we must always remember that.

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StarlightMcKenzie · 14/10/2011 11:21

And in the run up to the tribunal we have just got in our independent witnesses and I forgot how awful it was.

You kind of reconcile things in your mind and believe that somehow everything will be okay and that he is doing very well, then they insist needs a hellova lot more support than you originally thought and way above what the LA are suggesting, rather than just a bit extra.

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StarlightMcKenzie · 14/10/2011 11:24

Sorry, ranting away, but what they all agree on is that ABA isn't the most suitable but it is the best bet if I insist on a maintained mainstream.

What they say he needs is an Independent school for academically able children with HFA, which I absolutely cannot consider because almost all of them are boarding and ffs he'll only just be 5.

Not an option.

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WilsonFrickett · 14/10/2011 13:45

Nooo sweetheart, you can't even consider boarding him at 5! What would that do for his emotional development? Do you think you'll get the ABA though?

blueShark · 14/10/2011 14:34

It's excellent that his speech is coming along nicely, i have to admit had a tiny tear reading it....and secretly wishing my DS speech gets to that level soon. It's great that all financial and emotional effort is showing results. Well done to you and DS.

unpa1dcar3r · 14/10/2011 17:08

Something I saw on FB earlier and thought of you Star; (A bit corny but kinda sweet)

"Mummy's are those who understand the things their children Do Not say"

StarlightMcKenzie · 14/10/2011 17:27

Perhaps it is the pregnancy and hormones etc but I felt a bit low today too when walking along a footpath we had to go into the road for a minute as two men were repairing a wall. DS was really interested so I prompted him to ask 'what are you doing?' to which they gave a good answer (too language rich etc. but they weren't to know)

Then one of the men said to ds 'so work hard at school and then you won't have to do this!'

Only you lot here could understand why that set me off. If ds can repair a wall, live independently, talk to passing children and bring in an income then I'd be absolutely delighted. Trouble is, to achieve that he has to work much harder than the average child and so do we.

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Becaroooo · 14/10/2011 18:14

Oh star

Yes. Yes.

My SIL is disgusted because ds1's big dream atm is to be a driver for Eddie Stobart

My SIL thinks this "beneath him" i.e. beneath their family.

I have never been so close to physical violence on another person as I was at that moment

If ds1 ever learns to read and write well enough to do a job he likes and is good at then I will be f*king ecstatic.....lorry driver or astrophysicist!!!

zzzzz · 14/10/2011 21:38

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WilsonFrickett · 15/10/2011 09:40

Mine has finally decided he doesn't want to be a penguin and now wants to be a streetsweeper. He has taught me so much about appreciating the little things

coff33pot · 15/10/2011 13:25

Mine either wants to be a stunt man or a dancer with Lady Gaga (trust me its fitting!)

What does it matter? As long as they are healthy, provide for themselves and have a family of their own. That to me is a wonderful thought to hold on to rather than if he will be the next astronaut in space!

TheTimeTravellersWife · 15/10/2011 13:51

I feel for you.

I had a meeting with the LA Ed Psych recently and she asked me about how I envisaged DD's future. I told her that I wanted her to live a life, a full life, as "normal" as possible, which means, living independently, having a job, and a relationship. Normal, in the everyday sense of the word.

She looked at me as if I was from the planet Zog or somewhere! But that is my aim and that is why I will keep on battling and fighting so that she gets the help and support that she needs now, so that she has a future, other than sitting in a day care centre, rotting away....

I often have tears in my eyes, when I see DD going into school. (Mainstream, 25 hours support, won at Tribunal, LA just itching to reduce!)

You see, I know that she is so brave. She is going into a world which often makes no sense at all to her, but she goes and never complains and always tries her best. She is beautiful, and funny and clever, just not in an academic way.

She has a long way to go, she is nearly 9 and she can't tell the time, can't do days of the week, has no concept of the value of money...I am starting to think that she may develop better "life skills" in a special school placement.

She is self aware and she knows she is different and we work hard on her self-esteem, which so far, is good.

Being a parent is hard. Why does the system make it so much harder for parents of children with SN?

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coff33pot · 15/10/2011 16:05

TimeTraveller Its because they are outside our box looking in. They see the problems and difficulties the child has and it stops there. They see the kids as a battle to be won due to bad behaviour that upsets their apple cart in ideal school setting. When they leave school thats where their involvement ends so they dont look beyond that. We on the other hand can see way past the shell and what our children are truly made of and capable of, we look at the person within :)

zzzzz · 15/10/2011 16:07

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HairyMaclary · 15/10/2011 16:28

That self awareness is so hard sometimes isn't it. I have vivid memories of the day DS said 'Next time I'm born I won't be damaged'! He was referring to his brain damage (he's got CP) but where he got the 'next time I'm born' bit from I don't know. He still hasn't quite got that its permanent yet though.

Luckily DH was there as well so he took over while I 'went to tidy some cupboards'!

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