Respite is the Gift that is Always Out of Stock
Welcome to the first A&Me weekly newsletter ....
This week has felt like a win after a long battle, the battle to get a few hours’ rest is finally being won. It all started in January of this year with a call to ask for help, but we were met with rejection after rejection. We were challenged as to why we needed support and what we had done personally to help ourselves!
With me and my husband both working full time, the only support we had for Rhys was through family. There was no after-school care, holiday clubs, or the friendly childminder down the road who would accept my son. When you have a child with additional needs, there is no list of childcare support or after-school clubs for you to choose from, you are just expected to work it out for yourself, and find a way to hold down a job while supporting your child.
And we had done a lot ourselves, creating a complex arrangement of flexibility to allow us to remain employed and have my son safe when not in school.
My work starts at 06:30 am (or 07:15 if I allow myself a lie-in), with me taking the afterschool run on three days of the week, and covering all bedtime routines and after-school activities.
My husband with his flexibility from work, covers the morning drop-offs, lunch box making, breakfasts, and holding onto enough patience to allow him to survive the day. He starts his work once everyone is safely in their educational setting, and then works late into the evening to get his hours covered.
The gaps between me and Justin’s mad routines are taken care of by my mother and father-in-law, in attempts to juggle Little Baby Bum, pizza for dinners and trips to the park, or imaginative barbie scenarios at the request of my youngest.
Holidays are survived with bucket loads of stress and the buying of additional leave to retain everyone's sanity!
It was safe to say, we and our employers had done our parts of working out a way to juggle life in a society that has minimal support and options for parents who want to keep working. So when I called up to ask for help, my speech to the lady on the other side of the line, was descriptive and detailed as I burdened her with my struggles.
After a long fight with the system to just get the request for respite accepted, we got a social worker, and things started to move in the right direction. We had a well-being assessment to back up my request, then a carer’s assessment to check on our sanity. After another two months, we were successfully awarded a number of hours of respite a week!
Only to be told that there was no resource to accommodate us. The agency had no staff, and our only option was to employ our own resources via a system of direct payments.
And I knew no one!
So we pushed again, and after another couple of months, we made progress.
A lady sat in my lounge last week and talked me through her proposal. She was from Bernardos and would support us with respite for Rhys. But that was not all. We spoke about our goals as a family, and what we were working on with Rhys, or more realistically, the things we were struggling with and couldn’t find the time to focus on!
And there was a list of things - a starter for ten of what we were going to aim for with their support.
So this week was a win. A big win after nine months of pushing and hoping. In three weeks’ time, we will be giving Rhys a great opportunity to develop further. An opportunity to aim for new goals. All with the support of Bernardos and the respite they are offering.
Support is something that is not there in abundance, the system is struggling under the demand. We are so lucky that we have been able to get something because every little helps. It will help us as parents, but we are not the ones who need it, it is our son who needs it. He needs it to be the best version of himself. To be given the opportunity to excel in a world that is not accommodating to his quirks and ways of learning.
He deserves this opportunity!
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Coming Up Next Week
The 2nd of November is the BAPS Awards (that’s the Bloody Awesome Parents Blog Awards), and I am a finalist in the “Blog Post with the Biggest Impact” category. So let’s all keep our fingers crossed for a great outcome, but if it doesn’t work out, I will still have won with an amazing night out.