I was initially reluctant to apply for this. I have a brother with severe mental and physical disability and in no way would I classify my son as disabled next to my brother. My son has JIA and severe asymptomatic uveitis. He was diagnosed in July 2019. He is exceptionally bright, and have been told by the nursery room supervisor that his academic level was that of a primary 2 year old (he is 3.5) and yes I am bragging because of course he is my son and I am SUPER proud. Anyway, since his diagnosis and many meds later I have noticed a character and behavioural change in him. He barely walks anywhere telling me his legs are 'ouchy' I try to encourage him, and make it fun but he ends up getting incredibly frustrated, angry and sad and I can tell he is genuine. Getting shopping is incredibly hard, I don't drive and I have to carry him and a weekly food shop back home. A 7 minute walk turns into a 30-40 min one because I have to keep stopping, putting him down, moving the bags about and picking him up again. He gets daily eye drops, one three times a day and one once a day, which is verryyy hard to administer as you can imagine, the one that is once a day is very stingy and sore. He gets oral steroids once a day and methotrexate by injection once a week, which as you can imagine is incredibly hard to do! I do it myself at home after being taught for a while at hospital. He also has really bad constipation, he has had this since he was weaned and has been on laid for it ever since, however now I have to try and get more in him since the medication exacerbates this totally. He has a bowel movement about once every week and a half to two weeks. This leads him to wake up so much in the night, and not just wake up, he screams so loud, he is so hard to settle. His sleeping has worsened also since the meds as pred and methotrexate side effects are nightmares and insomnia. I barely sleep!! I have to sleep with him because of this, which is the hardest part too as I have to stay awake to do my uni course work.. So I jotted all that down, got all of his medical records since diagnosis from the doctors system (consultant correspondence detailing his eyes and joints, the way they are treating it and prescription list) and sent the form away last week.
I am just wondering if anyone here has DLA experience. How long did it take to process, what is the procedure? As in, will they call me, keep me updated etc. What award is he likely to get? Ive read about people being notified when their claim form was received, however mine has been away for a week, sent first class and I still haven't been notified. Could mines have been lost in the post?
Thanks a lot! And apologies about the bragging, this is recent news to me and I have worked hard teaching him a lot of stuff, he is super inquisitive!! :D