• Replies 2 replies
  • Subscribers 65 subscribers
  • Views 780 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

I don't know what to do - new

DayDreamer

Hello, My five year old son hasn't been diagnosed with ASD (yet!) but definitely appears to have a number of traits (if that's the right word). He has cerebral palsy (unable to walk independently), no speech (uses Makaton and just started using PECS). He has a number of sensory issues and it is these which are driving me to distraction.

He bounces on his knees, flaps his arms, turns/rubs pages of books/magazines etc - this could go on for a LONG time (hours, I suspect) if I don't remove him from the situation/engage him in a.n.other activity. The bouncing and flapping pretty much continues throughout. There doesn't seem to be a pattern in regards to triggers - quiet/noisy, dark/bright etc.  Historically he responded well to the use of a weighted blanket, ankle weights, body brushing/massage etc but nothing seems to work anymore. I hate seeing him like this - though he seems happy enough in himself. Nothing seems to engage him really - it's as if he's so busy being 'busy' that nothing else stands a chance.

Firstly, I realise it is MY problem but welcome any advice as to how I can learn to either help my son and/or learn how to manage my 'irritations'. I love him to pieces but can't watch him simply 'stim' (assuming this is what's going on) for every waking minute of the day. It's breaking my heart :-(

Parents

  • Hello Daydreamer

    I'm not at all qualified, I think, to offer any kind of advice as to how to help your son, but there are plenty of people around on this site who, I'm sure, will have words of genuine wisdom for you.  It is you and possibly what you refer to as your 'irritations' which draw me to your post.

    I lived a four and a half year nightmare - despite a lot of joy and a lot of love - with a child who was microcephallic, had CP, was blind, epileptic, prone to seizures and more.  What you have described sounds as much a nightmare to me.  You are having a horrible time.

    This may well not apply to you but, just in case, I will tell you honestly that there were times when I responded to my child with fury, sometimes almost with hatred, that there were times I wished her dead - and myself with her.  I later found that this was one thing I had in common with a surprising number of parents, most of whom had very great difficulty acknowledging those feelings.

    I loved my daughter with all my heart, and still do.  Twenty years after losing her my chest aches for the want of being able to hold her in my arms.  I HATED her condition.

    That's the key.  I was fortunately quick to see it.  It is alright to be angry, it is alright to 'hate', provided you can control it and do no actual harm, and it is not a reason to feel guilty or invalid or incompetent.  It is the condition we hate.

    I do hope that makes some kind of sense.

    I'm off for a day in the park today (lucky me, I know) to spend time with my squirrels and birds before I return to work, in a school, tomorrow, but I will be back.

    Warmest possible regards to you, Dreamer,

Reply

  • Hello Daydreamer

    I'm not at all qualified, I think, to offer any kind of advice as to how to help your son, but there are plenty of people around on this site who, I'm sure, will have words of genuine wisdom for you.  It is you and possibly what you refer to as your 'irritations' which draw me to your post.

    I lived a four and a half year nightmare - despite a lot of joy and a lot of love - with a child who was microcephallic, had CP, was blind, epileptic, prone to seizures and more.  What you have described sounds as much a nightmare to me.  You are having a horrible time.

    This may well not apply to you but, just in case, I will tell you honestly that there were times when I responded to my child with fury, sometimes almost with hatred, that there were times I wished her dead - and myself with her.  I later found that this was one thing I had in common with a surprising number of parents, most of whom had very great difficulty acknowledging those feelings.

    I loved my daughter with all my heart, and still do.  Twenty years after losing her my chest aches for the want of being able to hold her in my arms.  I HATED her condition.

    That's the key.  I was fortunately quick to see it.  It is alright to be angry, it is alright to 'hate', provided you can control it and do no actual harm, and it is not a reason to feel guilty or invalid or incompetent.  It is the condition we hate.

    I do hope that makes some kind of sense.

    I'm off for a day in the park today (lucky me, I know) to spend time with my squirrels and birds before I return to work, in a school, tomorrow, but I will be back.

    Warmest possible regards to you, Dreamer,

Children
No Data