Kitting out your car for a quick get away..............

One of my earliest blogs covered how to kit out your child's wheelchair so you can head out in a hurry.  Here is a link to that blog post: the-sara-lee-method-and-kitting-out your child's wheelchair. Further to that post,  I don't always take Owen out in his wheelchair but I'm still keen to get out in a hurry. 

We have a special harness that lets Owen sit in a normal car seat. We use this seat if we are taking out other equipment such as his walker, jogging stroller or tricycle. They take up the space his wheelchair would have taken up which means no wheelchair (or the things I kitted out his wheelchair with). I have had to have a nappy bag ready, then remember to throw it in the car. Additionally, I sometimes need to change him in the back of the car (due to the lack of adequate change facilities at parks etc).   So I decided to kit out my car for changing Owen and other things I might need for outings where we don't have his chair. 

Solution:  Car seat organisers. I bought two $5 car seat organisers from Kmart ( you can get them from just about anywhere though) and placed them on the back of the back seats (see below) that Owen's wheelchair sits between. He can't reach them from his wheelchair (otherwise the contents would be spread across the car before I even got out of the driveway) but if I'm changing him everything in easy reach for me.

What Did I Pack?

• Sipper cup
• Spoon
• Snack food (for Owen it's baby food custard custard etc as he still likes them)
• Feeding tubes and syringes
• Baby Wipes
• Antibacterial wipes
• Tissues
• Disposable change pads
• Several emergency toys
• Nappy disposal bags
• Sick bag
• Disposable gloves
• Hand sanititizer
• Nappies
• Hat
• Pen
• Bib
• Sunscreen (not officially in there yet but will be)
• Nappy cream
• Umbrella

Stored elsewhere in the car:

• Change of clothes
• Fold-able picnic rug
• Bike pump (in case his tricycle or jogging stroller tyres need pumping up and trust me it's happened)
• Screw driver set (I've needed it for his bike trailer)
• A box of muesli bars (so I can grab one if I'm hungry)

Writing the above list makes me wonder if I was meant to be a boy scout........as it appears Owen and I will be ready for just about anything!  I hope you will be too :-).

Advocating Tips

If you ask me what makes me tired, I will often tell you it is the paperwork associated with being a special needs mum, the advocating to ensure Owen gets what he needs and we as a family get what we need too.  All that takes an extraordinary amount of time and energy.

I thought I would share a few tips I have picked up along the way, in the hope it helps you.  It is not fail-proof but it might help.  

Advocating Tips

Prepare
Read any rules or policies associated with what you are advocating for ie, enrolment policies, service guidelines/principles, transport policies, patient care guidelines etc.  Get to know the terminology, phrases and words they use.  If you aren't very good with that sort of thing, ask a friend or another special needs parent to help.

Take off your parent hat
This is really important.  You need to take the emotion out of it.  You need to consider the facts.  You need to put yourself on the other side, the side that is making the decision.  You need to match your child's needs up with the rule or policy you have just read.  Are they entitled to it? If they are outside of the guidelines, how much of a exception are you asking them to make?  Is that a reasonable exception?  What are the tangible benefits of the exception both for your child and the provider.  Is there any other way?   

Get evidence (in need)
This could be a therapist, dr or nurse report that backs up your request.

Put it in writing
Firstly don't get personal and be polite.  Treat them how you would like to be treated.   Put it all down.  Link it to the policies, use the same terms the policy/procedures uses.  Use dot points (if you can) to make it easier to read.  Include the benefits for your child and your provider.  If you are asking them to go outside a policy, tell them you know you are making such a request but also tell them why it is critical to do so and why there is no other valid way.  Tell them how you came to that conclusion.  Be specific and factual. Include any evidence you have organised.   Remember the person you are talking to or writing to are doing their job and 99.9% of the time want to help you so give them everything they need to be able to say yes to your request.   Let them know what you want and when you anticipate hearing by.   

Good luck!