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Posted Jan 31 2010 2:08am
So you’re battling to fight for services for your special need’s children. Hmmmm who can you turn to for support. First point of call, your doctor, surely.
I am in the process of appealing a decision for my child to be granted DCA. This is an entitlement given to children with a special need who require more care and attention than that of a typical child their own age. This is given to my son at present that has severe Autism. My daughter has Aspergers and ADHD, so surely she would get it also, well no; apparently she is not seen as a qualifying child. Surely as she has a special need, this alone would entitle her, nope, absolutely not.

Ok so she is refused twice, I appeal twice, one appeal denied, one still going. So with an appeal you supply all supporting evidence to help you get this benefit. I ask my doctor for a letter, her response: they will contact us if they need anything. Ok no, I need you to write me a letter supporting my application. Oh we don’t do that.

WTF, is your doctor not supposed to support you and your child, we are both her patients. You see I’m convinced my doctor thinks my darling daughter is simply bold, a brat or all brats. This woman will agree that I am at my stress limit. She will agree that I need a holiday, a break from the kids, a rest, a massage or 2. She says this with the fullest of sympathy and empathy.

My doctor was born into a very wealthy family, you know the type. All of the family were doctors etc. She’s a lovely woman and unless you need a letter, a great doctor.

She has no kids, drips in gold as do all the family. But yet she can’t even scribble a few lines together to help you get a benefit she more than knows you need.

My daughter is 9, she needs help to get dressed, have a shower, bath, she needs more help with homework than a child her age would. She needs to be listened to very carefully; she needs things explained in great detail. DD also needs support with her illness as it does affect confidence and self esteem. DD has speech and language Occupational needs; she is still on a waiting list for this. DD needs a lot of help DAILY.

Her IQ is extremely high which causes her to become bored which leads to frustration. She suffers mood dips frequently due to this. She needs constant entertainment, constant movement as her body does not regulate like ours, and her sensory processing problems are through the roof. Her pincer grip is very week and the muscles in her hands also; she needs help with a knife to cut food. DD can become quite hyper and out of control when she gets over excited, giddy or during play she will become rougher and rougher, leading me to control her before the carnage starts. You see her ADHD is very controlled by her Aspergers, I am lucky, but once it breaks free it’s a nightmare, and it breaks free daily but I bring her back under control.

DD does horse riding which helps her body regulate, but it’s an hour’s drive. She goes swimming, but in this weather and with all the flu’s near impossible at the moment. I bring her to play dates, play centres, all this to help her regulate her body and brain stimulation. This puts enormous pressure on me as its driving, with my other kids along for the drive. This aggravates one child as he prefers to be left be and in his own company, this is not too bad on the baby but means he has no routine and is dragged from pillar to post and is being reared inside a people carrier.

You see Aspergers may not be seen as an illness that requires more care and attention than a typical child her own age by the HSE. But by me, I find it harder to deal with than Autism; I am emotionally, physically and mentally drained by Aspergers and ADHD. I am doing everything I can to help my daughter with her needs. But this goes completely unrecognised. Therefore I do not get her DCA payment. I am disgusted by this, as I am run ragged looking after this child, on top of my other 2 children also.

So I made a decision to change doctor, I’m hoping this new doctor will give me the support I need, That she will understand my life, daily tasks and emotional, physical and mental health. That she will see my daughter for what she is, a differently abled child who needs support and assistance in her daily living skills and environment. She might even decide to scribble a few lines together to help me get benefits, therapies and services for my daughter.

I am disgusted at the lack of support us mother’s of special need’s children receive. It is a disgrace and this country along with it is a disgrace. I know were in a recession, but my daughter is in a bubble called Aspergers, this bubble will never burst. She will never break free from this illness; it is with her for life. She will develop skills to help her succeed in life, her challenges will become less challenging, she will go on to have a good job hopefully etc. But this will take a lot of support, therapy and education alone the way. Why can’t they invest in the children when their young instead of casting them aside, ah we’l deal with them when their fucked up and going further into frustration, depression and have lost their confidence and self esteem. Yes let’s leave it till then, hey it will cost a fair bit but look at what we save in the long run by denying DCA, carers and respite benefit. Happy days for the government and a quick save for them.

What really annoys me the most; you see ads on the telly, LOOK AFTER YOUR MENTAL HEALTH. They highlight the consequences if you do not. The consequences are scary, especially when you know them yourself personally. These ads to just home even more how important it is that your daughter looks after her’s also, a fear of bipolar development also hits home. These ads are even on the radio, it begins to haunt you, it echoes in your brain. I will keep fighting for my daughter’s DCA and I will continue to fight for everything she should be receiving, it may damage my mental health in the process but my daughter is my world, as are all my children. With this DCA I can enrol my daughter in summer camps, college coarses to help keep her stimulates and mix with children just like her. I can continue to bring her horse riding which will keep he muscle development in check and her body regulation under control. I will bring her swimming to help again with these needs and compliment her therapies when she actually gets them. I can bring her on more social outings to help her social skills, her emotional and mental well being.

To the government: Invest in the kids while their young you ignorant bunch of twits, help alleviate the problems before they become so extreme that it is too late for them to be helped. See the problems for what they are, understand the struggles this illness brings, and help the families who are struggling so hard to help these kids. Invest in these children as their intelligence will be what keeps this country afloat, these children are our future. Researchers, Scientists, Engineers, Mathematicians, subject specialists are all listed as the jobs our intelligent children could venture into. Who needs these people the most, our doctors, our government, our teachers, our environment, our whole country needs them. How little respect they show them while they are young thoe is appalling? Shame on this government and shame on anyone who disrespects and child with special needs. Ignorance is bliss till it kicks you up the arse.
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