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

Original poster

2 people in the last week have asked me whether my ds has adhd!

309 replies

essbee · 20/02/2005 19:23

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Blossomhill · 22/02/2005 21:00

saok??? Soak of course

roisin · 22/02/2005 21:12

Hope you have/have had a relaxing bath Essbee. You asked (way down) about our positive rewards system. It's just that we use the pasta jars solely as a positive reward system. It's so visual, and he can look in the jar and say "Look at my jar - see how good I've been this week!" The misdemeanors (sp?) we deal with separately, in a way that isn't necessarily recalled for the rest of the week iyswim, because that approach doesn't seem to help him.

So I may set him a specific target to earn a piece of pasta; say helping with a chore or getting up/dressed without me having to hassle him ... Or I try to 'catch him/them being good' and put a piece of pasta in when we've had a pleasant meal without them winding o-a up or similar.

Essbee, I'm sure you're familiar with all this stuff anyway. It's just that for us pasta jars work really well, but they don't work well (for us) if used negatively.

roisin · 22/02/2005 21:18

I'm so cross that you're not getting the help you need. Is there anyway at all you can think of that you can buck the system? Have you come across anyone helpful and supportive who can help you and help fight your corner for you.

For example our EP advised me to contact the local "specialist teaching services", and the language specialist there (whom he knew personally), for some advice about resources. I did this 'unofficially' - i.e. not through any formal referral or anything. She suggested meeting up rather than speaking on the phone, and she was immensely helpful to me. I have met up with her twice, and she also introduced me to the 'Aspergers/autism person' there too, who gave me some fantastic advice and materials. Obviously this is not a formal route to a diagnosis, but it has enabled me to plug in to some expert advice without having to go through formal channels (and the associated waiting lists). I am racking my brains to think how you might be able to get access to something similar.

roisin · 23/02/2005 13:50

Hiya Essbee! I've been thinking of you. I hope you've had chance to phone, and have had a positive response from camhs.

Original poster
essbee · 23/02/2005 14:01

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roisin · 23/02/2005 14:55

Oh, Esbee that is a pathetic response from them. It is just not good enough! I am really really angry now

I can't remember what you've been through before. Have you actually seen an EP at some point? If so you could try contacting them directly to see if they can suggest any ways you can get some immediate help.

What is he like at school atm btw?

Original poster
essbee · 23/02/2005 18:49

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Blossomhill · 23/02/2005 19:05

Oh so sorry to hear that Essbee That's all you need

Have you ever spoken to the school about ds and what they see his difficulties are?

roisin · 23/02/2005 19:06

Yes, I did mean Ed Psych. You can go independently but it's very expensive. (Ours cost about £400). But school should refer you (which will cost nothing). I can't believe this isn't in the pipeline already, waiting lists can be quite long for LEA EPs ... like everything else

I wish I could do something to 'make something happen' for you ... you've been on my mind all this week. We've had so much help with ds1 in the last 6 months, and you've had practically nothing. But your needs seem much greater than ours. It seems so unfair.

Blossomhill · 23/02/2005 19:07

You are well within your rights to request an ep see ds. All schools have attached Ep's so it shouldn't be a problem although there may be a waiting list.
Personally I found the paediatrician more useful and helpful than the ep although had to involve the ep as dd was going through statutory assessment at the time!

Original poster
essbee · 23/02/2005 19:19

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Blossomhill · 23/02/2005 20:09

My dd is so bright Essbee but when she was at ds's school and was unsupported she learnt absolutely nothing as she wasn't getting things broken down so that she could understand.
Since being in the unit (17 months now) her langauge skills have developed, socially she still has difficulties BUT is improving as she has social skills twice a wee, within 2 weeks of starting she could write her full name (before then it was just scribbles. She can read anything nowadays and understands most of what she is reading, she can also write fluently and even though she is left handed writes beautifully. I don't want this to sound like I am boasting about dd (although obviously I am very proud ) the point I am trying to make is that with the right help most children can achieve. My dd is such a good example of that!

roisin · 23/02/2005 20:11

I don't know for sure, but I think these days you can pretty much insist on seeing any records that anyone has about you or your child.

Hope the ball starts rolling soon for you. Once you get 'in the system' things should start to happen on all sorts of fronts.

I just have this vague memory that you contacted your GP way back in August (is this correct?) when I was still waivering about ds1. It's outrageous that nothing tangible has happened in all that time

Original poster
essbee · 23/02/2005 20:14

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Blossomhill · 23/02/2005 20:15

Your ds deserves it and needs it Essbee. So do you too

Original poster
essbee · 23/02/2005 20:39

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SecondhandRose · 23/02/2005 20:48

Essbee,sorry if I am repeating but does he sleep at night? Does he go a full 10-12 hours uniterrupted.

Could his behaviour be influenced by anything he eats? Is it possible to take him back to basics with food and see if anything affects him.

If he sits still and behaves to watch TV that shows he is very capable of doing it. There is a technique called 'Positive Parenting' that you may be interested in.

HTH

Blossomhill · 23/02/2005 20:50

Unfortunately the louder you shout the more you get. I found that out very early on with dd.
As soon as we realised that dd had a language disorder I read up on it as much as I could. I then went to an Afasic meeting (speech and language support group) and it was there that I learnt how important statementing and that it's the only way to guarantee help as it is a legalling binding document. Dd's first request for a statement was turned down and everyone was like oh she'll be fine on School Action Plus. I was adamant that we went back with more evidence and wouldn't have given up. Luckily I had all the pro's on side. The reports written about dd were awful although I knew they had to be worst case scenario or we wouldn't get anymore. It was hard but all worth it in the end. I just wonder what would have happened if I did just agree that action plus was okay? I dread to think.....

Blossomhill · 23/02/2005 20:51

Secondhandrose - I'd be interested in that

SecondhandRose · 23/02/2005 20:51

My DS was once accused of having ADHD by his teacher of all people at 5yrs old, I was told last week by the school head that he is inline for a scholarship next year. So it shows how wrong people can be.

Original poster
essbee · 23/02/2005 20:55

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Blossomhill · 23/02/2005 20:56

That's great Secondhandrose .
Although there are obviously genuine cases of add/adhd that are caused by some kind of chemical inbalance to the brain.

SecondhandRose · 23/02/2005 20:56

Was that tongue in cheek Blossom? Or shall I go ahead?

Original poster
essbee · 23/02/2005 20:57

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Blossomhill · 23/02/2005 20:57

Essbee - it's if ds can pay attention to things that are not of his choice.
Dd can sit for 1-2 hours painting becasue she wants to. She will sit on ds's gamecube for ages and watch tv, read etc. However that does not exclude hyperactivity. I thought it did too but reading Christopher Green's book and seeing the developmental paed. this is not so.