He has Down Syndrome.
He has regular health issues.
Regular check ups.
And new problems arising everyday.
He has little speech and communication.
This causes frustration, which in turn leads to violence and tantrums.
We have had to learn new ways to communicate.
This sets him apart from his peers and he knows this causing more frustration.
We have to become translators to others... often causing even more frustration on his part.
We have to be extra aware in public due to this.
We also have the extra worry that if lost, he then will not be able to communicate who, what, why, where etc.
Due to lack of all of the above he needs constant watching and reassurance.
He also wears a hearing aid.
He has lack of understanding of his surroundings and of danger most of the time.
This causes danger to himself and others.
He has poor muscle tone.
He walks less than a few metres before he has problems mentally and physically.
He falls over a lot.
We have to use a very large buggy to cart him around if walking distances where we can't stop.
We have problems pushing him because he's so heavy as he is now 9yo.
He is too heavy and too tall to carry.
He has chronic constipation due to a lazy bowel and only goes once a week with medication.
This makes him uncomfortable, in constant pain and frustration.
He has 2 sets of clothes, 1 for when his belly is swollen (before meds) and 1 for when he's not (after meds)
This also leaves problems after his meds are given due to lack of control of his bowel (use your imagination).
His immune system is very low so he catches everything.
Winter is hell for us due to this constant illness.
We tend not to leave the house and he misses a lot of school.
This stops his routines.
This also stops him having a normal active life like his peers.
I also get ill because he gets ill... this is the way of parenthood though.
We struggle to get normal things done a lot of the time due to the problems listed above.
I struggle to find jobs flexible enough to work around his constant illness making me unreliable.
I am now and have been for 9 years, a full time, stay at home CARER.
THIS IS MY JOB.
It is a 24/7 kind of job.
It is hard mentally and physically.
I do not get paid for it.
I do not receive a single benefit to help with MY living costs in exchange for it.
Therefore we are a single wage family.
Hoff is taxed as much as the rest of the working public.
We are not entitled to any form of Tax credits.
Kyd however, receives Disability Living Allowance.... Does that make us scroungers??
I have missed so much out of this and I know other parents of Down Syndrome children and children with other disabilities, will be able to relate and add to the list as each of our children are so similar yet so different.... so be open to interpretation whilst thinking of people you know with these problems.
I have recently had a fight on my hands and I am proud to say I won. I went to a tribunal to fight for Kyd's right to have his Higher Rate Disability Living Allowance reinstated. It took a whole year with very little money, lot's of work for me to do, lot's of note taking, statement getting, research and diary writing. I got as much evidence from as many people as I possibly could to prove to the Government that Kyd was as disabled as I had told them in my forms....
That's right, I had to prove my son had the problems he had because my word nor that of ALL of Kyd's specialists were enough to get an agreement from the office workers who decide on, just by reading some badly planned out forms that need a degree to fill out, that my child actually has the generic problems that come with Down Syndrome that haven't really changed much over all these years...
Shame they can't do the research themselves about even the smallest generic problems concerning each disability and store it on a system that these office workers can reference when doing their jobs.... instead of causing heartache to the parents by making them feel like they are lying scum that are trying to fiddle the government out of the little they actually give to the disabled now.
After winning my fight we decided that the best way to ease our lives with Kyd's issues would be to get a mobility car, which we were entitled to now he had his full claim. We had been struggling not having a car and although we would have loved to, we just couldn't afford to run one anyway. With our new full claim we were able to get on the mobility scheme and by doing this we would be able to transport Kyd around and have an easier life knowing that he was in fact safer than he is walking. Those of you with cars will understand how much easier it is to have one when you need to go anywhere with children or in a rush. Those of you without cars will understand those times that you could just do with a car, if you times that by twenty, that is our everyday need for a car.... We could go on living without a car... but if one is on offer and will make both Kyd's and our family life easier, why would we turn our nose up at it?
I have come up against some prejudice about the fact that we are now on the mobility scheme from those who are obviously quite ignorant to our situation. Although not to my face which I resent quite a bit. I would like to set the story straight and give you another way of looking at it so that you can have a fully rounded opinion on the situation I hope and pray you will never find yourself in. Therefore giving you a more open view and a less one sided argument.
We are not faking an illness to receive this benefit we quite obviously have reasons why we receive it.
We quite simply want and need to ease our life, so we can concentrate on the things that we can help, rather than worrying about the consequences of those situations we can't.
This is what this benefit is there for after all.
Hoff works bloody hard to provide for us and we are a one wage family because I currently can't help towards the situation because of the above situation, and as much as that makes me feel guilty, he does a bloody good job and works bloody hard and continuously to give us a roof to live under.
We don't receive any other help from the government apart from this Disability Allowance to help Kyd.
I am pretty sure most of you concerned get tax credits etc which are from the government and paid for by the tax payers... just like Disability Living Allowance.
So what makes you any different to us?
We too have to save for everything we buy, for every time we go out and for everything we need because we can't afford to just spend willy nilly. We couldn't afford the car, we so desperately need, without the help of the Disability Allowance and we are so grateful for that. We do not take this for granted and we do not expect anything from anyone apart from what we are told by the guidelines of the government that we are entitled too!
... You can afford to run your cars and wear all your lovely new clothes, go out, buy new things and live your lives as a family on the money you get for the hard work you do... but you struggle...
I understand that... because we are exactly the same, except we have all the added fun of the above mentioned daily life to contend with.
If you are having problems with cash but can afford to run a car, smoke, drink, have sky, go out and buy random purchases.... maybe you should look at your outgoings rather than attacking the people who are getting the tiny bit of help that they fully deserve and are entitled to.
The negativity and ignorance you show towards my situation and the situation of others just screams at me that you have your own issues and in fact we are just a scape goat for the loathing of the situation you are in.... Bit harsh but I'm pissed off that I have even had to write to explain myself when it seems so bloody obvious to me and to most others, that parents of children with disabilities are struggling everyday with so many different things and you are begrudging me, and them, the little bit of help and respite we get from the government because you are jealous of our income??... Try walking in our shoes for a day, a week, a month, a year and then tell me that it is out of order that we get this and you don't.
Grow up and Wake up - Life isn't all equal and maybe you need to stop wallowing in self pity and respect what you have.
Think of it this way... What we get for Kyd is only a tiny percentage of what Hoff pays in Tax... meaning we are just taking out only a tiny bit of what he is already putting in!... you can call it a tax rebate if it makes you feel better...