Need Advice

Sorry i forgot to say a thankyou for the link  

 hi there i also was frieked out when she said to mix his movicol with a fruitshoot everyday a fruit shoot every day?  she just stood and questioned my son's consultant as she didnt agree with him being on lactolose as it was sugar based?!? and she also questioned where i got his dulcolax pearled from as they dont exist anymore i politely told her where i got them from ie which pharmacy and that i had not heard about them being discontinued she stated  tha they were not making aenough money from them , i replied that it would probably be to do witht he licensing of the product she jsut glared at me ....i did not see eye to eye  with her on a number of things she mentioned to my son , she stated to him he will have to do a poo every day ... get real  some do not , everyone is different how dare she i say xxx

This is a question for other contributors as much for Patrice but I would like to know how much benefit people get from dietary advice such as the food intolerance network at http://fedup.com.au/

Patrice: your mention of FruitShoots rang an alarm bell. I would avoid such a high sugar drink. I'm not in as much difficulty as your son so I don't know whether this could be relevant in his case. Perhaps other contributors might chip in on this question?

Hi patrice,

  Just to say, what you are describing with different presentations in different settings is quite common. I've read it time and time again on this forum. My theroy is that the child holds onto their behavior and emotion so much at School that the outpooring is like a tsunami of emotion once they move to another environment. My son does the same. At college he's constantly fearful and expected to conform, as soon as he gets home he kicks off. Often rude, often agressive. Since he's left College a calm has desended on the house that I cannot begin to describe. Since most of his life has been spent at School, other than during School holidays, we've seldom experienced such calm on a continued basis. It's like somone has flipped a switch. He still has meltdowns, but nowhere near as bad as before.

It sounds like your son is very sensory sensitive and by what you describe he may need some additional emotional support to help him with managing his anger and anxiety. I would definately consider an assessment by an OT of his sensory needs, as I mentioned in my earlier post. Could you contact your GP for support is he/she helpful?

My GP was not very helpful, so I looked elsewhere for support.

In the most stressfull periods of my sons last academic year, we have used Osteopathy from a Practitioner who understands Autism. It helped turn down the volume a bit for him. He found it very powerful and requests it when he recognises he's over stressed. She also talked him through visualisations. Using the staircase senario to help bring his levels of anxiety down, Each step he decended brought him to a calmer place, we still talk him through this if he goes into meltdown.

I'm pretty sure NAS also offer advice on this site to help with behavioural issues. Try calling their helpline number to see if they can offer further advice.

I hope the info is helpful. My thoughts are with you

Kind Regards,

coogybear

hi there and thnax for your support , what you are saying sounds so familiar .... my son is statemented, and in special school, by the OT saying this it just does make life even harder to get any help in this avenue, my son is a totally different person in school so thy tell me , but as soon as he comes home the frustration and anxietys begin, i ge thit screamed at called horrid things , he throws things , hits his younger siblings then says he hates his life , wishes he was dead , he still wont sleep alone dad has to sleep with him every night as he is afraid in our old hous ehe woullnt go upstairs at all says he could here someone shouting his name when he came up with us, here only last week he said he saw someone on the landing so it has started again here , i jus tdont know which wy to turn xx

just to say my son always had to wear velcroe fastening shoes as he had no choice he had to have certain shoes to have the metal plates put into to try to stop him from tiptoeing to no avail!!  now at 10yrs old he doeassnt wnt to appear different and wants lace up footwear it causes so much stress either way is a nightmare if we jus tsaid noooo it would be a catastrophie , and it is also trying to get him to learn to fasten them xx

I feel for you!

Can I just pick out one thing from your post? Does your son need to have shoelaces? I remember struggling with laces when I was young but now we have Velcro! My chidren were brought up with Velcro shoes as this made life just a little bit simpler. They have now moved on to use laces but we never made an issue out of it. Most people, except maybe ASDs, don't study each others' shoes so it just isn't important to make an issue out of something that needn't add to the heap of stress that you are already dealing with.

HTH

I hear a lot about children with ASD behaving differently within different settings. My son will not go upstairs at home, he throws himself on the floor and kicks and screams and attacks me when I try to carry him up. At school he walks up 21 steps with support from staff! He is scared of the bathroom upstairs in my house, he doesn't like having his hair washed! It can be frustrating when you feel that people don't understand the extent of your childs condition and how it affects them. I am lucky with my son in a way as he gets a lot of support from proffesionals and school staff, I have just had his statement through and was pleased to see all contributors were honest in their reports. This was not the case with my daughter so I really understand your frustration. The headteacher at her school said she appeared 'happy and comfortable' when in fact my daughter was suicidal and self harming. She never went in the playground or the canteen, never spoke to anyone and no children spoke to her! Some proffesionals do lie, I don't know why but in my expierience sometimes the contradictions are genuine (like the stairs) and sometimes people just lie, and it makes things harder for parents trying to get support for their children and its horrible. I sent my daughter to a childminder in the end to get evidence for her diagnosis as the school refused to provide any. She is now diagnosed and statemented and at 12 years old the psychologist assessed her as having a cognitive age of 7, so the school were wrong and dishonest! Hope it helps a little to know you are not alone with this.

Hi patrice,

  Can i ask a couple of questions? How old is your son and what is the purpose of the assessments. I'm assumimg you are looking for statemented support?

My LEA were very obstructive when I requested a statutory assessment of my son. Is this what you are trying to work toward?

The upshot of my predicament, is that owing to the LEA's continued refusal to assess my son, I had to get independant assessments of my childs needs. Parents don't often realize this is an option, but frankly it was the best thing I could have done for them.

Independant assessments are costly. I had to borrow from my Mortgage to pay for them. However, the thoroughness of them was unbelievable compared to the odd visit by professionals to the School etc and i felt heard as a parent. They listened to my concerns and looked at them during the assessment. 

Firstly, I wrote everything down in an open statement which I gave to all concerned in assessing my sons needs. The openess and transparency of this is self evident and made sure all concerned understood my concerns as a parent. Secondly, I commissioned an independant reports for my son and gave my statement to each in turn, a week or so prior to the assessment so they understood my concerns.

The OT assessment was very thorough. Three hours or so of observation, fine and gross motor testing and tests on independance etc. Following that, a report was sent to me to read and all the implications of the results explained to me. From that point on, the LEA's refusal became academic because it was overturned at Tribunal and the LEA were ordered to assess my sons needs.

I know this option may be expensive and you may have to travel to have your son assessed (Although my son was assessesed in our own home) however, their is no adgenda with independant assessments. They are only interested in the childs presentation, they take their time to truly assess the childs needs so they are not clouded by the cost issues that often concern the LEA's and more importantly they listen to the parental concerns. (not just a snap shot of 15 mins)

I'm not sure where in the country you live, but it may be worth your consideration.

Is your son in receipt of DLA? You may be able to fund private assessment this way.

I do appreciate your frustration and it's clear by what you say you don't feel heard. My son had many of the issues you have mentioned including the toileting problems, so I do understand. Stay strong, I know it's exasperating, but those here on this forum hear your frustration and know how difficult it is.

Hope my limited advice is of some help.

Take Care,

Coogybear XX