What a heart wrenching, emotionally draining, re-evaluating, realisation and difficult thing to do!
Because of my son’s late diagnosis, nearly 13 years old, I have not applied for DLA before. In fact I questioned if I should? I couldn’t think about the “extra” stuff I do. That is because I have done all that extra stuff for the past 13 years and consider it our normal routine! Of course I know that most of the time I am exhausted and that I manage my son on a daily, hourly, minute by minute basis. I’m a single Mum so I am aware that demands would be higher than the “normal” nuclear family. ONLY…..
When I really did have to think and answer questions about our daily routine, it all becomes clear as to why I spend most of my days in a daze! The amount of encouragement, planning, negotiating, calming down, reasoning, comforting & persuading is off the scale. It just isn’t measurable, not in the way the form wants you to do! I have had to average everything up but this of course does not highlight the really bad days when it literally takes hours to encourage your son to take a bath, if you actually succeed. I found myself laughing so hard (hiding my mortification and embarrassment) on daily washing! WASHING???? I am lucky if he gets in the bath once a week, let alone daily washing! Alarm bell, Bad Parent ALERT! Easily triggered, have to keep reminding myself I am “good enough”.
The amount of time I have worked to give my son strategies that do work so that he can have some form of normality is not questioned. The fact that all these difficulties always existed but we just managed. The question, when did this difficulty start….Err…let me see….BIRTH! Of course I know that all babies take over and beyond dedication but mine really was at times difficult. He most likely had sensory processing disorder then so sudden noises, hand dryers and crowded places freaked him out even as a small baby. I’m not seeking compensation, or sympathy, but come on? When did this start?!!! I know my rational brain says this form is generic and other conditions are sudden onset or later onset, but I want them to understand my circumstance, the circumstance of many families claiming for Autism. Maybe there should be forms for different categories or even just for ASD? Then the questions could be worded in a more relevant manner that is an easier prompt to remind us what we actually do?
On a regular basis? What’s that supposed to mean, every day, once a week or in my case sometimes regular enough so that I cannot plan too far ahead and have to change plans because he can’t do it that day, but that may only be once a fortnight sometimes longer, but other times every day, more than once!? I don’t want to lie on the form but it is really hard to give a balanced picture of our lives and the impact it truly has when you have to average everything up. The spaces to “explain your answer” are not big enough and sometimes I cannot find the words to explain.
I am a “do it all in one go” that’s how I get things done but I am now feeling very hyped but fatigued and my hand is so painful from the writing. I know that the next few days I will be mulling over the questions, “did I answer that ok” “have I said enough” “did I explain that right” along with the more poignant questioning. I will question how much I do? Could I do more? Do I need help? Does he need more help? Should I have done things differently?
I also now want to get back to thinking of my son as he/himself whom I love and adore and hate having to talk about him having a disability. In our house we acknowledge the ability more and try to manage the “other bits”. I don’t like the negativity I feel when listing the extra things I do for him and what he struggles with. He is so capable in so many ways, it is just unfortunate that the western world is not adapted for him all the time, so we have to adjust how he does it, what we do and how we cope.
My brain is draining of the last bits of comprehension as I write this so for today I sign off!