Why the Cameron’s are nothing like you or me. #InvokingIvan

Once again the Cameron’s are talking about their son, Ivan.  This time it’s #SamCam.

While I am not trying to disrespect the memory of a dead child, I find it insulting  for her to talk of  ‘breaking point’ and respite when so many carers get no help at all.

When my own son was diagnosed with Autism Spectrum Disorder over 2 years ago we got nothing.  We still get nothing.  No respite. No carers assessment. I’ve been waiting since diagnosis for autism training and occupational therapy. I’ve fought for  a certain awful teacher to recognise my son’s condition is unique,  she tried to get him to conform to her way.  Anyone who has autism or cares for an autistic person will know that’s not going to work.  We’ve had zero support from the services the Cameron’s had.

My friend cares for her son too. The same month my son was diagnosed all her respite was cut. Granted she didn’t get much, an hour, but suddenly that was gone due to the cuts. She’s fighting,  just like me, for every crumb.

Breaking point is 2 and a half years with no respite.  It is a midnight meltdown that wakes up my 2 daughters. It’s the 30 minute struggle to get my son to get in the car for school.  It’s the day the car broke down and I had to carry him to school  (he’s 6). Breaking point is him still being awake at 2 am and you’re scared to sleep in case he hurts himself.  It’s the ‘advisor’ at the job centre saying “he’ll grow out of it, why can’t you work while he’s at school? ” it’s spending 3 hours filling out the dla form while your dad was dying.  Yeah, I did that. Wasted those precious hours because the form is ridiculously long and complicated.  I used to care for my dad aswell. He died last year.

Breaking point is running out of clean clothes for your little boy because he soiled himself 5 times in one morning because his body doesn’t tell him when he needs to go.  It’s dreading bath time because he hates it, it hurts him, he screams. It’s 2 hours sleep and a call from school because he’s having a meltdown and you have to collect him. It’s having to explain to another paediatrician because there has been a different one at every appointment and it took camhs 2 years to send them the diagnosis.

If there wasn’t an election round the corner,  maybe if cuts hadn’t slashed the services we should get support from to the bone,  then I might,  possibly,  be able to stomach the article.  But there is an election round the corner and services are threadbare. Therefore I will call it out. This is emotional blackmail and that little boy should not be used in this way.

Next time you read a similar article think about us. The carers who toil for a measly pittance of £61.35 a week. With no help. Sleep deprivation and demonisation as our wages. Walk a mile in our shoes and then see who is ‘spiteful’.

Advertisements

Posted on April 7, 2015, in Uncategorized. Bookmark the permalink. Leave a comment.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: