Should I be patient or pushy?

[flowwithit]

I have posted here a few times and had v helpful replies. I will be brief as I can. It's taken 4 yrs to get Ds dx and now we have dx of HFA or Aspergers. He is now in secondary and struggling. He is v anxious and upset. He can't eat or drink much because he says he doesn't feel well when he does. I am managing to get stuff down him with persuasion but he looks sacred to eat. He says he is frightened he might die because he can't eat properly. I told him I would never let that happen. He says he can't go back to school and feels worse every day and only being on his Xbox makes him feel ok. It's holidays so I thought he would be feeling relieved not to have school for a wk but he is worse! School said they would request ep ass as we have had private psyc. But they said it could be ages before Ds is seen. He is now on meds for anxiety and panic attacks. I have booked private SALT for April as we were advised he may have working memory probs? He is in a bad way can I do anything else to hurry this up?

Thanks for your reply. Ds says he doesn't like how it feels when he eats and it makes him feel sick. I think he is extremely anxious so I do think it's that. He has always been v fussy and will only eat certain things and if textures are separated but this is different he eats then looks scared and says oh no I can't eat it I don't feel well but he says he is hungry? He been on meds for nearly 3 wks now. I will try Xbox food bribe tomorrow give him little and often see if it helps good idea thanks.

Pushy with professionals, patient with dc is usually the best way to go!

Is he getting enough exercise to work up an appetite?

No he isn't getting any exercise. He doesn't like pe or outdoors really! So v difficult to get him out anywhere at the moment. He is so stressed its hard to get him out of the house.

Afraid I completely disagree with Pippinjo. Everyone, but particularly growing children need lots of exercise. It will help with his anxieties and stimulate his appetite. Can you introduce small amounts of exercise a bit at a time, eg trampoline in the garden, walk to school, or whatever fits with your lifestyle?

Booked app with GP. I think he is too low and worried about school at the moment so just trying to make life easy as poss for him and take away extra stressful things to lower his anxiety. I hope if he feels more relaxed he will be able to eat a bit more.
Can I ask GP to write to ed psyc to hurry up ass. Or should I just wait my turn?

Thanks he has no statement. Psyc said he prob would not get one? Not sure what it takes?psyc does not know its go so much worse will discuss at next app nxt wk. Half term this wk and he had better day today. He has eaten thank goodness and got him to drink water too so no panic now. Might need to get him signed off school by GP or psyc next half term though but they said that was last resort as getting him back to school would be worse after time off?

"Thanks he has no statement. Psyc said he prob would not get one?"

Oh, why oh why do such people talk such rubbish to parents?. Such nonsense like you have been told does a lot of damage. This person clearly has no idea what he is talking about with regards to statements.

Pipinjo has given you some good counsel re statements, I would also suggest you apply yourself and asap using the information she has given you.

BTW my son is at secondary and all the children I know of with AS in secondary all have statements, no exceptions. Such children at secondary need that extra support. Your son's needs at school are not being met (small wonder tnherefore his anxiety is sky high, poor soul). Him having a statement will give him legal protection with regards to his additional educational needs, statements can also address social and communication needs as well.

If you have not already spoken to the SENCO or special needs dept at his school I would suggest you do so asap. He needs to be on their radar.

You are your child's best - and only - advocate here.

Thanks both for v good advice. I have looked on directgov to find out about statements. It suggests a statement is needed if school can't cope and if action plus has failed? We have only just got Dx and he has only just started at this school in sept 2011.
He can cope with the work but it seems he can't cope with how big busy noisy it is. Rushing from lesson to lesson. Hates pe coz 100 boys all rushing to change with teacher shouting to hurry them up. Hates germs and using toilets so does not eat or drink much coz he said it makes him feel sick also so he can avoid toilets.
He is at smallest local school all others are over 60 kids per yr bigger.
When I spoke to school about these probs they said there wasn't much they could do about those things but they reluctantly agreed to fund ed psyc ass after I sent letter from private psyc. And
told them he is is on meds for anxiety.
Senco put me off when I asked for meeting. But I have spoken to form teacher who was understanding. I am asking for senco meeting again nxt wk now they have psyc letter. He is on half term but is already v anxious about nxt wk saying he can't go. I am worried about signing him off that we will never get him bk in again.

School nurse also. Old health visitor team can give you contact number for central admin / office for school nursing team.

They are NHS so not under school control, but visit from time to time eg weekly. She can weigh him in school, and if need be refer to community paediatrician re physical issues (in a lot of areas still, on paper at least they retain a poorly advertised, nearly defunct role as school doctors)

Price up any little private schools locally. Might be cheaper for council than the 1-1 or special school they'll risk paying for otherwise. or find a suitable independent special school and ask them to bring him for assessment. Since successful statement applications are what funds their places, they often then help with making sure your chance of getting one is maximised.

School nurse also. Old health visitor team can give you contact number for central admin / office for school nursing team.

They are NHS so not under school control, but visit from time to time eg weekly. She can weigh him in school, and if need be refer to community paediatrician re physical issues (in a lot of areas still, on paper at least they retain a poorly advertised, nearly defunct role as school doctors)

Price up any little private schools locally. Might be cheaper for council than the 1-1 or special school they'll risk paying for otherwise. or find a suitable independent special school and ask them to bring him for assessment. Since successful statement applications are what funds their places, they often then help with making sure your chance of getting one is maximised.

Sorry! Keep taking him to dr as well, having no appetite is an important thing in kids and sometimes is more than anxiety related. Also maybe a dietician can help advise how to sneak calories into him.

flow

What you have written re your DS is certainly grounds for applying for a statement doc personally. Directgov site is fine but IPSEA's website is far more informative re statements generally. Statements are suggested if school need more support and SA plus has not been enough to support the child. Its not a stigma honestly, his needs currently are simply not being met by school.

If he cannot manage the other aspects of school his ability to learn will be affected along with the impact on family life at home. You're already seeing problems with him being in school now, this could become far worse the further up the school system he goes. You need to think longer term as well. I would apply for a statement.

(Would avoid small private schools altogether unless the attitude within such a place is clearly and truly welcoming of children with SEN rather than just academics alone. With an independent school the onus is very much on you to prove to the LEA that the independent school you name is the only one suitable for him).