Help at home with autism

[les1]

Hi

i posted here a while ago and received helpful advice.

We have an adopted daughter who is autistic, she is now 8 nearly nine.

last year we were advised by cahms to remove her from her mainstream school as she was self harming and suicidal.

We did this but then had to fight for seven months to get her back into the right school setting.

She is now in a communication and interaction unit with five other children and receives 1:1 support as well.

 

We are pleased that this has been going well but her behavior at home and out and about is becoming more difficult and we really need help from professionals with this.

I wondered wether any of you have help at home from any professionals with regard to strategies or is there no help around.

We are seeing our MP on Friday. We are hoping to see if we can make him aware of the problems parents with autistic children face.

For instance the child who is passive in school aggressive at home. The lack of support and understanding that there is amongst the professionals in our area.

The lack of joined up communication between profeeionals supporting our daughter. The lack of understanding in the LEA in our area.

 

Do any of you have issues at home?

Do you have any help?

Is your local education authority helpful, have you found it easy to get your child into the right school placement.

 

I hope you don't mind me asking but I am trying to decide if there is anything I can do to improve things for other parents by somehow highlighting the issues we face.

hearing what others are going through or have gone through may help.

Lesley

[joybed]

Hi this is something very close to my heart as we have had to fight all the way for both our boys. DS1 took 2 years to get a diagnosis, his first school were useless and refused to get him assessed couldn,t afford it apparently, i worked full time was a single parent and my parents did the school run so at that time didn,t realise i could fight and wasnt in a position to do so anyway. When I moved in with my DH M moved schools they were very supportive payed for LSA suppport without a diagnosis and referred to a ed psych within 2 hours of him being at school, this was late september we had a diagnosis by december. Things were great for a while, good school, good statement and understanding kids and parents. I thought we had it made. Then he went to the local comp and things changed still had a good statement but teachers not so understanding and the bullying started he became lost in the system. The ASD team were great and school tried but didn,t understand the problems. This led to a period of flexi schooling which unfortunately wasn,t the right option for M either. We looked at special schools LEA refused to fund and said he was fine in mainstream (M is very passive at school and has very difficult behaviour at home). At the moment things at school are fairly calm, he is full time with 25 hours support gets a taxi to school is dissaplied from the subjects he finds hard to cope with and is happpily going. He has just chose his GCSE options and this led to a fight as the school hadn,t put him forward for ICT which is his only love, I am waiting to find if he can do this if not we will be back at square one. We have good support from CAMHS and Ms paediatrician is a fantastic man who i can,t rate highly enough, but I really had to push for a referral my GP thinks I am a pain in the bum.

DS2 I am still fighting for a diagnosis for, he is nearing the end of reception, can only read five words, can only count to ten and can,t write his name, he struggles to hold a pencil. At school he is becoming increasingly frustrated, I literally drag him there every morning and at home he is bouncing of the walls all the time. his twin is battered and bruised as am I and the house is chaotic. He has no diagnosis and no support . School do all they can but with no statement what can they do.

I asked for help from social services recently as i have been in hospital for surgery and can,t drive or lift anything heavy, they couldn,t help. Within 5 days of the surgery I was back to cleaning, cooking and struggling to cope with the boys. I have had to physically restrain the little one and lift him to stop him attacking his sister and last week he attempted to push me down the stairs.

I suppose we have had both good and bad experiences. Sorry it is such a long reply but have a lot to say on this subject.

[lynne]

 

 

When my son was struggling at school there was a home and school support service. The ASD team visit you at home and give you advice and support.

 

Our ASD team came out to visit my son than went on maternity leave. So I heard nothing and had no support.

 

[call me jaded]

My PCT has a CAMHS challenging behaviour support group that you can self-refer to (phone up and ask to go). They work quite closely with our parents group and it's as much about talking things through and working out what is do-able at home.

 

Speaking personally, giving DS sensory input and removing all additives from his diet were key interventions that allowed me to do the other work needed. My mother was the only help, no-one else. That and a stack of behaviour books and we worked it out for ourselves, taking one thing at a time. When he went to secondary school they were just as good at dealing with him as me and he has made very good progress.