What have my husband and I been doing this past week?
Disability Living Allowance forms for our 6 and a half year old son.
70 questions is a lot of questions.
70 long and involved questions that on the surface seem hard to face, yet, when delved into deeper can in fact be utterly soul destroying.
I had warning from some wonderfully supportive friends who have filled DLA forms out themselves, that they can be hard going and boy were they right. Until you sit down and have to think about and then process those thoughts in to action to write down every little area that your child struggles with in life, how they struggle with each area, how long they struggle with it, how you help them, how long you help them for, how others help them and what it does to them physically and emotionally again and again and again… you just can’t get it.
On top of the sheer magnitude of remembering everything and putting it down into a cohesive piece of writing that isn’t rambling but says enough so that all the information is passed across, there are the things you don’t even think about to consider. For example, I bed share with Sullivan every night for his safety. I’m there immediately when he wakes, I’m able to comfort him and re-settle him to sleep. I sit with him for hours if he’s had a nosebleed or is in pain with his legs or just can’t settle for tics and stims going in to overdrive. This is every night for me and has been for years, so I didn’t even consider it as beyond normal levels of support. It’s a similar story when it comes to his toileting. I won’t go into details but having spoken with an expert, I hadn’t even remembered that Sullivan’s toileting routine was so different to those of his neurotypical peers and would have left it off of our form completely.
I am so thankful for Jasmine, my local Mencap support advisor for children with SEN in the Bromley borough. She has been a brilliant source of information and guidance during this process for me, helping with everything mentioned above and being someone I can sound off to when things got too much. I have a wonderful close friend who brought her teaching and SEN experience together with her knowledge of our family to be our ‘other’ person who knows the child on the form which I couldn’t be more grateful for. My friends who have been through this process with their own children and who have offered advice and a gentle holding of hands have been invaluable, too.
One thing that was suggested numerous times was to make a list of positives. I didn’t really understand this at first but after a week of going through all the hardships, struggles and differences in our lives, things felt a little bleak. I am not a depressed person and I am genuinely content with my life as it currently stands, so it was a shock for me to feel this way but shrouding yourself in a sea of lined papers and forms covered with scrawls of intimate personal details about what makes you different, why your child hurts, how your child struggles etc in fine detail really started to get to my head.
So here is a celebration of our positives (and there are many!)
- Sullivan’s smile is always genuine and lights up the room.
- When Sullivan likes you, there is no pretence. He thinks you’re awesome.
- Sullivan is fiercely brave.
- We get to spend a lot of brilliant family time together.
- Sullivan’s dry sense of humour is hilarious.
- Sullivan is the most gentle soul towards babies and animals.
- Our family life is well organised.
- Sullivan’s imagination is a wonderful thing.
- Home education has helped us grow more than I’d imagined possible.
- Sullivan has amazing fun just spinning around in a circle.
- Sullivan will always give you an honest opinion.
- If we need to remember something from days passed, Sullivan will know it.
- Sullivan adores playing video games and inviting others to do so with him.
- Sullivan cares so deeply and often gets involved with charities helping others.
- Sullivan is determined and strong.
- We all grow stronger together, every day.
Have you completed DLA forms for a child before? Did it affect you negatively? Maybe you’ve written your own list of positives before? I’d love to hear your experiences below.