The Disability Living Allowance Tunnel
Sooner or later in the life of a special needs parent, you become aware of the dreaded DLA form. If you’re not sure whether your child qualifies, click here for more information about what Disability Living Allowance is and find out if you can get it. You only have to complete it every few years but it soon comes around again. Each time I peel back the envelope and pull the 40 page form out, I take a deep breath and gird my loins, preparing myself for an unpleasant week ahead.
Deal With It On The Worst Day Or The Best Day… Whatever Works For You!
I like to deal with it head on rather than let the form sit on my desk and stare at me for weeks on end. I just think getting it done and out of the way is the best approach but that’s just me. There is no ‘good time’ to fill it in and often the worst times are the best times: when you are tired, at the end of your tether and ready to throw in the towel because that is exactly the right tone to set the scene as it truly is, warts and all. As someone who tries to put a positive spin on life in even the darkest of moments, I have to put my optimism aside just for this short time and really dig deep into how hard our life is compared to others who do not have a child with disabilities. Why? Because the amount of money my child is awarded depends on me writing an accurate description of what his day to day needs truly are and the more I dumb it down and the easier I make it sound the less money he will be awarded.
Have Positivity Breaks
The last time I had to fill in the DLA form, I completed it in seven days on very little sleep, sometimes with the baby sitting on my knee while I wrote or lying on the floor amongst piles of photocopies of medical reports. I wanted to get it all done and dusted within a few evenings but ended up spreading it out over a week because it was beginning to feel really soul destroying and I needed to give myself ‘positivity breaks’. By that I mean watching a ridiculous comedy, going out for a drink with a friend, doing some retail therapy and having a date night with my other half. This meant that the in between days when I sat and answered heartbreaking questions about toileting, sleep or mobility, trawling through pages and pages of medical reports, didn’t feel quite so hard.
Speak Positively To Your Child
Until I had signed and sealed the envelope I still went to bed most nights feeling drained and frustrated that I was expending so much energy and thinking time being negative so I made sure that every day I had extra cuddles with Rufus and spoke positively to him. Rufus is non-verbal and we don’t fully know his level of understanding but that doesn’t stop any of us speaking to him as though he has complete understanding of every word. So for example, if I had been writing the previous evening about how he was unable to walk unaided, in the morning I told him how strong his legs were and how brilliantly he held himself steady while we walked together.
Counteract The Negative With Your Own List Of ‘Can Dos’
After I sent off the form I gave myself a day of breathing space from writing and let some thoughts about what Rufus can do drift around in my head for a day. Yes, there is a lot that he can’t do that he should be able to do at his age but there is so much that he does bring to the table that is worth shouting about. I decided to write a list of what he can do to remind myself of how utterly brilliant he is. I had planned to print or write some of these out and put them on his bedroom wall to remind myself and others in our household when we are feeling overwhelmed with the negatives. You can read the full list here.
Tell A Friend That You Are About To Enter The DLA Tunnel
People don’t realise how emotionally draining it is to fill in the form and it’s important to let close friends or family know that you are in this place so that they can support you and encourage you for the few days or weeks it takes you to get through it. It may be worth actually asking people who know your child well to send you messages during your time in the DLA Tunnel about what they love about your child, fun times or positive memories they have of your child. Family and friends can also be great reminders of how well you are doing at parenting your child so don’t be afraid to ask for this kind of encouragement because all the negatives can lead to believing lies that you are not parenting your child well enough and that adds to why they can’t do what they should be able to do. Why not start a What’s App group conversation with your nearest and dearest to keep you going through the DLA Tunnel and beyond?
Make Yourself A Care Package… Or Better Still, Ask Your Village To Make One
Caffeine and sugar are your best friends when you’re in the DLA Tunnel (well, they are definitely mine) so before you even open the envelope make sure you’ve got the following in stock: Chocolate, biscuits, tea and coffee. And for when you’re done: alcohol and bubble bath… or a wild night out booked in. If you are reading this as a friend or family member, as soon as you hear someone talk about the DLA form arriving in the post then go out and buy some of their favourite treats, package them up and send them as a surprise in the post. I can’t think of anything better received during a time like this.
Lastly…
Maintain perspective. All you have done is write some words on some pieces of paper. You have chosen a tone in order to meet some criteria to receive some money that your child is entitled to. The DLA form is nothing more than that. It does not define your life, your child, your parenting or your relationship with your child. Once it is in the post and out of the way, you get to tell your child’s story exactly the way you want to.