The last few days have been pretty normal, the usual scenario for the school holidays. I’m constantly tidying up yet my house is constantly a mess. I have three boys who are fed a decent breakfast, snack, lunch, dinner and supper, yet are STILL demanding food and raiding the cupboards like they haven’t been fed for weeks. The boys argue and fight over ridiculous things, a fine example is what some YouTube kid is going to open next in a surprise egg. Honestly, you couldn’t make this up. And we’ve resorted to drinking cheap £3 a bottle wine in order to justify buying a bottle every night, rather than buying a decent bottle once in a while. Standard school holidays, or at least that’s what I tell myself every night whilst sipping my cheap £3 wine; it’s not just us, it CAN’T just be us. All families have this school holiday stress. Right? Then I remember that we have Duchenne in our lives, which amplifies our stress to a whole new level.
Hugo had his North Star assessment today, which gives him a score out of 34 to measure his current mobility. Hugo scored 23, which isn’t a bad score to be honest, but equally isn’t great for a child of his age. I’m not upset about that as we expected it, and his score is ok for a Duchenne child. He was a little star throughout the assessment and he puts 100% effort into everything. I really couldn’t be prouder of him.
However, it was at this appointment that I discovered the DLA hadn’t even bothered to contact Hugo’s physiotherapist when assessing his entitlement. He’s been refused mobility component because they do not have proof that he isn’t ‘choosing’ not to walk, yet they haven’t even bothered to contact his physiotherapist, who knows everything about his mobility! I questioned this, to which I was told that it isn’t ‘common practice’ to contact professionals, yet they ask for detailed contact information! The whole system is infuriating. I delved a little deeper and asked how they can refuse him for mobility, yet award him high rate care component due to ‘requiring assistance with all aspects of personal care and daily living due to poor mobility’. The response is laughable. An advisor at DLA proceeded to inform me that ‘Hugo doesn’t feed himself with his legs, he uses his arms, it’s like if he had epilepsy, he wouldn’t get mobility because he doesn’t walk down the street on his arms’. For the first time in my life, I was actually speechless. Firstly, I couldn’t actually believe what I was hearing. Secondly, I have repeated this statement to myself over and over again and I still can’t make any sense of it. Thirdly, who on earth is training these people to give out this advice?! Don’t even get me started on the fact that he doesn’t have epilepsy, what relevance does that comparison even have? When I mentioned this, I was coldly told that it makes no difference what medical condition he has, as they don’t take it into consideration when awarding DLA. What?! I’m still speechless now, I am literally flabbergasted at their sheer incompetence and lack of empathy.
The DLA application is completely draining the energy out of me, and every time I make contact with that horrendous call centre, I come off the phone in tears. I’ve said it before, and I’ve said it to them, I don’t even want it. I would do anything to not have to apply for DLA for any of my children. I want Hugo’s health and life back. But, he is entitled to that money, he deserves it, and I will fight them to the end to make sure he gets what he should have.
We go on holiday on Saturday, and I am counting down the hours. It might only be Skegness but I couldn’t be happier to be having a whole week of fun with my boys. No hospital appointments and no DLA stress. Skegness or Florida, it makes no difference to me this year.