tough few days cant stop crying tonight

hey all, Im new here. quick info about us.... I have a boy almost 7 years old awaiting diagnosis for what seems like forever. We've had all sorts of reports from educational psychologist and the other people i forget who they are, all say 'off the record' mild autism/ aspergers. Hes had this going on from nursery, our diagnosis appointments just keep getting put back dates like we dont matter! i cant handle him i really do try so hard, i read up on how to help him. Im a single mum half the year as hubby works away, and our sons been to two schools in the few years he's been educated and hes not able to handle other children and at both schools serious bullying went unoticed leading me to try home education.

Hes also epileptic and the meds he was on made him even more violent, i had to hide anything sharp as he tried stabbing me with a sharp pencil and even stabbed himself later on.

The thing is no one will help with coping strategies or advice until hes been diagnosed, its putting a huge strain on my marriage as hubby wants to work away more. i have no family to help so im with my boy 24/7 i love him so much but feel myself bracing myself for another punch or attack when somethings too much for him (like shopping/ walk in the park, simple things).

He's started hurting our animals lately too in his fits of rage, thing is i dont want to give into him all the time he needs disapline but right now he refuses to listen to a word i say. i just feel so lost Frown

Parents
  • hi thanks for your reply. we get the people working with him saying 'off the record' as apparently they cant say he has autism or whatever it has to be this one doctor and i suppose its their way of covering themselves in case it isnt i dont know but it is VERY annoying.

    Funny thing is i have taken the initiative to help him

    1/ im here on this page

    2/ headphones / ear defenders

    3/ made his bright colourful room one colour he chose

    4/ took him away from a dangerous situation ie school and home ed him which isnt easy and believe it or not i dont get ANY time to myself

    5/i buy him hooded clothes as he feels happier with hoods up

    6/ i put vast amounts of fabric conditioner on clothes and cut labels out to make them 'feel right'

    7/ ive seen the gp, school when he was there, asked his peanut allergist, epilepsy peadiatrician, hes also got a social worker to help him get into groups to socialise which the school set up when he was there and its a waste of time as she dosnt come up with ideas he would rather stay in

    8/ ds when we go out

    9/ i take sensory play toys i bought him out with us

    10/ tried sunglasses but he dont like the feel of them

    11/ bought him a thick rug indoors as he likes rubbing hands and face on it, bought lots of other sensory things he likes

    12/ joined home ed groups, take him to his fave place 3 times a week (library)

    13/ bought EVERY toothpaste on the market to get one he would use

    14/ made him his own 'space' in the garden, with a teepee and all hiw bird houses etc he likes and sooth him

    15/ Been on twinkl printing off different visual cards

    the list goes on, i appreciate its hard for him but me, I'm human too! I do try so hard to help him somedays are worse than others. All i think about is my son, are their peanuts anywhere when we go out? (he only has to touch where ones been) have i got his adrenalin with me? hes holding his head is he about to have a fit (as he wont tell me if hes unwell). Will it be busy out? where can i park in case he has a meltdown? etc

    The anaphylaxis to nuts and epilepsy add stress to the autism for himself and i.

    It must be the areas we live in that determin if health professionals are useful or not. psch ed suggested trying smaller shops first then get bigger gradually...I've been trying this, and trying to look for signs to try telling if hes had enough.

    i care from him from the moment the sun rises (he has a blackout blind but seems to just know when its up) until 7pm then i do my lesson plans then sleep, get up and do it all again.

    Today is a new day, we have an easy lesson day planned in his teepee. Im hoping it will all go better than yesterday :)

Reply
  • hi thanks for your reply. we get the people working with him saying 'off the record' as apparently they cant say he has autism or whatever it has to be this one doctor and i suppose its their way of covering themselves in case it isnt i dont know but it is VERY annoying.

    Funny thing is i have taken the initiative to help him

    1/ im here on this page

    2/ headphones / ear defenders

    3/ made his bright colourful room one colour he chose

    4/ took him away from a dangerous situation ie school and home ed him which isnt easy and believe it or not i dont get ANY time to myself

    5/i buy him hooded clothes as he feels happier with hoods up

    6/ i put vast amounts of fabric conditioner on clothes and cut labels out to make them 'feel right'

    7/ ive seen the gp, school when he was there, asked his peanut allergist, epilepsy peadiatrician, hes also got a social worker to help him get into groups to socialise which the school set up when he was there and its a waste of time as she dosnt come up with ideas he would rather stay in

    8/ ds when we go out

    9/ i take sensory play toys i bought him out with us

    10/ tried sunglasses but he dont like the feel of them

    11/ bought him a thick rug indoors as he likes rubbing hands and face on it, bought lots of other sensory things he likes

    12/ joined home ed groups, take him to his fave place 3 times a week (library)

    13/ bought EVERY toothpaste on the market to get one he would use

    14/ made him his own 'space' in the garden, with a teepee and all hiw bird houses etc he likes and sooth him

    15/ Been on twinkl printing off different visual cards

    the list goes on, i appreciate its hard for him but me, I'm human too! I do try so hard to help him somedays are worse than others. All i think about is my son, are their peanuts anywhere when we go out? (he only has to touch where ones been) have i got his adrenalin with me? hes holding his head is he about to have a fit (as he wont tell me if hes unwell). Will it be busy out? where can i park in case he has a meltdown? etc

    The anaphylaxis to nuts and epilepsy add stress to the autism for himself and i.

    It must be the areas we live in that determin if health professionals are useful or not. psch ed suggested trying smaller shops first then get bigger gradually...I've been trying this, and trying to look for signs to try telling if hes had enough.

    i care from him from the moment the sun rises (he has a blackout blind but seems to just know when its up) until 7pm then i do my lesson plans then sleep, get up and do it all again.

    Today is a new day, we have an easy lesson day planned in his teepee. Im hoping it will all go better than yesterday :)

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