Really struggling

Hi TommyMum,

Just wanted to say there is nothing wrong with admiting your struggling to cope, without support it is a truely difficult thing to cope with. Do you have a Social Worker (Disabled Team), if not perhaps you could give your local Disabled Team a call and ask them to come out and make an assessment for both You (Carers Assessment) and your Son to identify your needs fully. I hope this info helps a little and you find the right support.

Hi Cluck, When I was little I always refused to eat unfamiliar food. I have a great many food allergies and sensitivities which abated for a while as I grew up, but have returned now.

I still have difficulty working out what upsets me. I have days when my mood plummets and I get snappy with people and have to go somewhere quiet and work out what is troubling me. This is called Alexithymia, emotional blindness and is often found in those with ASD.

You could try having a picnic. These days you can buy a lot of picnic food to save time, but make your son something he specially likes, even if it is just bread and jam or peanut butter. You say he enjoys the beach, so having food he is confident about may help. You could test this by having a picnic in the garden one day, to see how he likes it. This way, you can tackle each aspect of the holiday situation separately to see which cause the problems.

Best wishes

Hi

Cluck78 -Your son is most likely very scared by new situations, youi don't need me to tell you that! Perhaps before going to the beach or for a pizza you could describe to him in detail what will happen on the trip before you leave the house - how you will get there, where he will sit in the car, the route you'll take etc. Help him to imagine himself there, get him to tell you what he will find difficult or unbearable. Start this several days before the trip and go over it a few times with him until he understands and can repeat it all back to you. Then stick to the plan exactly. Sorry if you already do this, not meaning to patronise.

I don't think he can help his behaviour so a consequence might not be appropriate. If your child was blind you wouldn't punish him for falling over a table. However i know from experience that this causes trouble with siblings and they can find it hard when they see the autistic child doing things they would be punished for. Its difficult to understand that this isn't naughtiness - its a coping strategy to deal with terror.

Not all of us think of ourselves as sufferers. Its not easy but I wouldn't be any other way given the choice.

Hi TommyMum,

Welcome to the community. There are a mix of parents and sufferers (i'm on the spectrum but not as badly affected as your son so I know some of the things that can be done but not the details about his particular situation) I hope we can give you some help and pointers to get some assistance. Have you found a local group of parents to join? Have you applied for benefits that might pay for extra assistance in looking after him?

(Cluck78 - welcome also - could you perhaps start your own discussion thread? - it can get confusing if we try and answer two peoples' questions on one thread)

Hi

I'm Mum to a gorgeous son who is going through the process of being diagnosed with autism.  This is taking forever, we've been raising concerns since he was four and he's now nearly 10.  His behaviour suddenly changed from "a quirky dinosaur lover" as his teachers have always said, to seriously unhappy last Sept.  Finally school listened to us and got the school Doc in at the start of May.  She was fab and agreed 100% there were strong grounds for our concerns, which she shared.  We are told it could take until Jan for him to see all the professionals required.  

He presents very mildly at school and holds it together until he gets in the car.  In his class of 24 he has 1 child with statement for ASD, 2 children with disabilities, then 2 children without statements who have recently been diagnosed with ADHA and emotional difficulties.  From Sept he will be mixed with additional children and this will include another child with ADHD, the class will then be 30 children.  He responds well to the strategies that they have in place to meet the other children's needs, but as yet they are unwilling to put any strategies in place for him (or us!) as he's yet to be diagnosed.  Also, in Sept he'll be in a classroom with less adults, just 1 teacher and TA, in a brand new classroom which is due to be finished next week, which he obviously hasn't seen yet. I'm sure that other people have worse situations but I am struggling to see how he will cope in Y5 with the current class/staff ratio situation.  Am I right to be concerned?

I feel like we are absolutley unsupported at the moment and our whole family unit is struggling to cope.  I work as a SEN TA myself and I am running out of strategies.  Our recent holiday was the major low point.  He's been anxious about going but I did all I could think of to make this easier for him, he helped plan the route, he investigated well in advance of the trip, we were going somewhere we've been before so I hoped he'd be ok.  He was far from it.  

The normal triggers for his behaviour changes are eating out or day trips but it's managable at home.  He took his increasing aggression to the next level and I was stunned at what he did and said.  Simply trying to drive to a local beach one day he bit my husband, pulled his sister's hair, dug his nails into me and explained in detail how he'd like to kill me. Once in the car he took his belt off and sat on the floor.  He then poured a bottle of water over the floor of the car and spat at his siblings.  Once all this had been addressed and we actually got to the beach, he was lovely and had a great time.  Going out for a meal at a pizza place we'd passed by several times was also a nightmare.  He actually threatened to kill himself over and over again and hid at the bottom of a cupboard in the fetal position when the time came to leave.  It took an hour to calm him down.  

I don't know what to do when he refuses to leave the house or go out.  I'm so emtionally invloved I can't think straight anymore.  Clearly he needs a concequnce once he's calm but I just don't know what to do with a kicking, spitting child who is plotting my death.  Should I give in and accept it's too much and not go out if it's avoidable?  Should I decipline him during the epoisode or afterwards?  Is this change in behaviour grounds for a CAMHS appointment?  How do I request this?

Major positives I suppose are his triggers are becoming easier to spot.  We have also arranged some private equine therapy for him from Sept which I hope will help him.  

Any advice would be fab.

Cluck