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Feeling really fed up

10 replies

Tigerlion · 15/03/2010 18:17

I have been wanting to write for ages about my DS and his experience of school which he started in September but have always felt too shattered and emotional to go into it. However it is so on my mind that I will try to write a bit.
DS was put forward for a SN school for SLD but did not get a place as there were 75 applicants for 3 places (it transpired all the children who got in had been to a SN pre school, which unfortunately I did not know was on offer at the time). I was disappointed that he did not get into the SN school but was positive about the fact that he was going to start MS school with a statement and a 1:1 SNA. Having been excluded from so many things at preschool I was excited that he would be in a class of other children from our town who he could befriend and start going to parties. He only went to one party at preschool and had to leave after 10 minutes as he was screaming so much. He never got invited after that one.
Since September the poor little man has made one friend and even though he has him he likes spending most of his time playing on his own. His behaviour has got really bad and he spends most of his time at home screaming and hitting his DS. He is now on melatonin as he was taking so long to get to sleep and up so early in the morning. That has made a slight improvement but even so, we have just come home from an hour in the park where he was screaming his head off as he wanted to go on a baby swing. He will simply not take No for an answer.
We are waiting for the paed to diagnose him as we need to know one way or another what it is that is getting him so upset. When he is being good he is the sweetest thing in the world but when he is having a melt down he is impossible to deal with and however much I try to love him, I cannot love him when he is screaming his head off. I have tried to comfort him but he just kicks and hits and screams. He has been doing quite a bit of this at school as well. There are only 3 statemented children in the whole of the junior school and I feel that they may be seen as a bit of a hinderance more than anything. It is a really lovely school but with the senco there once a week I feel that DS is not given all the attention that he needs.
I have made friends (or so I thought) with a lot of the mothers but have been deeply offended that many of them have held bday parties for their children and not invited DS despite inviting the majority of the class. I am too proud to ask them why they are excluding DS but maybe I should. The class will remain the same from R to Year 6 and I am concerned that if DS starts not being invited he won't be invited in the future. He always talks to me about who is having a party and what they are doing and I am so sad for the little man that he does not get invited. I know I am perhaps being a bit oversensitive but I just want my little boy to be happy and to be appreciated for the adorable funny little person that he is.
I have lost the energy that I used to have and have put on lots of weight as I just try to get through each day. DH does not get back from work until 9pm and by then I am too exhausted to do anything. I have been drinking a lot as it seems to be the only thing that relaxes me. I have been worried by my drinking but am unable to make any of the AA sessions as I have my DD with me during the day and when she is at nursery I am trying to get on with some work that I have taken on.
We are going to BIBIC in a few months. I am so discouraged to not have a diagnosis yet as we just want to know one way or the other what it is that DS has. Some friends have suggested that I go private as I may get a diagnosis quicker that way but I just don't know who to go to as I don't want to be ripped off as money is quite tight at the moment.
I don't know whether to take him out of his school and send him to a school where there are far more statemented children where he may get more attention. I just don't know what my options are at the moment.
Sorry to have gone on but the whole thing is getting me so down at the moment and I really don't know where to look for help.

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StarlightMcKenzie · 15/03/2010 19:06

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StarlightMcKenzie · 15/03/2010 19:08

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Tigerlion · 15/03/2010 19:59

So many people who see him suggest that he has many traits of autism. From a very young age he has been obsessed with lining things up and goes spare if someone moves one of the things slightly out of position. He flaps a lot and is always licking things anywhere that he can: walls in shops, hands, poles in parks.
Poor little thing will get obsessed by one thing and will not be happy until that is done, even if it is something that has been done and can't be undone. For example he will say that his sister should come out of the bath first and once I take her out he will scream for a good hour or so saying that he wanted to come out first.
A diagnosis will help us try to understand what is going on as I have had almost 5 hours of trying to deal with this behaviour. He started talking only a year ago so his statement was initially for SLD but the statement review has now highlighted his behaviour as being one of the main concerns. Did not get a diagnosis as the tests that they tried doing before did not get very far as he was non verbal at the time. The CAMHS psychologist is very young and always tells me to be calm with my ds, thinking that this will stop all his behaviour. I am calm and when I showed many of the videos that I had to take for the psychologist of his tantrums to a friend of mine who works with child behaviour and also has an autistic son, she said that my DS definitely showed signs of high functioning autism.
I am not asking for sympathy - I am just asking for someone to recognise that something is wrong with my DS. Once I know what the problem is (if there is one) I can then embark on trying to change his diet, add fish oils etc to see if that helps improve the behaviour.
The drinking is quite clearly my way of escaping the stress of the day. I want to get help for it but just don't know how I can as I cannot make any of the AA meetings and now that I would need some sort of support to help me with it.

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StarlightMcKenzie · 15/03/2010 20:08

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StarlightMcKenzie · 15/03/2010 20:10

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StarlightMcKenzie · 15/03/2010 20:13

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Tigerlion · 15/03/2010 20:17

He is 4.5. Yes, DH at home but only sees DC at weekends as up so early and back so late. Happy to go for a private diagnosis but need to know that we are seeing the right people.
Drinking wine, usually half to a full bottle every few nights. I know what my limits are and I certainly don't go anywhere near them.

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StarlightMcKenzie · 16/03/2010 07:16

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genieinabottle · 16/03/2010 10:42

Tigerlion, i'm sorry you are going through a bad time. {{{HUGS}}}
Pre-diagnosis times can often be pretty bad, especially when no support is been offered to parents.
You have to start shouting for help. Make a fuss, ask to be refered to someone who can help with behaviours at home. I 'm not sure who deals with this in your area.
Maybe talking to your GP, your DS'paed or an Educational psychologist could get you a referal.

Are there any relatives or friends who could spare a couple of hours each week for babysitting so you could go to the meetings about your own problems?
You need to make a little time for yourself. I know it can be easier said than done.

sugarcandymountain · 16/03/2010 12:51

Here is a list of practitioners able to diagnose ASD near the London area. I don't know if you are near to any of them but it may be worth travelling. Some of them take private referrals and others you would have to go via your GP. It's worth asking your GP as some areas don't have staff with a lot of experience and that might justify going out of area for a referral.

I would be a bit careful about mentioning your drinking or focusing on behaviours, especially with CAMHS. They often focus on parenting and home situation and avoid giving an ASD dx if they think there are other factors going on at home.

Can you ask Social Services with support for respite if you can't afford a childminder? It may be difficult to find a childminder to cope with your son if his behaviour is so severe.

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