So it’s been a busy few weeks and not much time for blogging! I feel as if I’ve been swimming through a sea of DLA forms, direct payments recruitment, Blue Badge appeals and chasing up appointments on top of the business of every day life! It does sometimes feel like a full time job managing Toby’s life, activities and appointments or top of keeping him happy and meeting his needs.
On the subject of DLA forms they obviously don’t take in to account sleep deprived parents and carers as next time I might request two forms as the amount of mistakes and scribbling out I had to do on this one makes it almost illegable!
In other news things are changing for us! Joel’s been approved to drop a day at work so he will have an extra day at home to plan, mark etc (joys of being a teacher!) which will free up evenings and weekends and create a better work life balance for us all. Obviously that will have a financial implication but we’re trusting that God will provide (He always has in the past!)
As well Toby’s respite care is starting during half term which will be fanatatsic for him and for us too. The whole respite thing has taken a bit longer than planned as we’ve ended up going down the route of direct payments and employing someone which involves lots of paperwork and insurance etc but it’s most definately the right thing for Toby and that’s what matters. This whole respite thing has taken nearly nine months to be put in to place and we’re really blessed to be able to access it as I’ve spoken to so many people who have been turned down.
With Joel loosing a day’s pay we’re trying to live a little bit more thrifty! We’re actually quite enjoying shopping around for the best deals and trying to save money. The other weekend we were out shopping and needed some new glasses and we figured out that ikea had the best price and the best quality however going in ikea is dangerous as we always go in for a look around and come out having spent £50 on ‘stuff’…! So the solution that we came up with was sending Joel in and he literally just bought the glasses – so in order to save money I sacrificed my ikea trip and stayed in the car with the boys! I’ve also limited my online shopping…poor Amazon! Some of our friends joke that I used to get a parcel delivered everyday (that’s not entirely true…!) but since the beginning of the month deliveries have been down! I have however had an exercise trampoline delivered for Toby today but that’s another story! Joel’s doing his bit too by cutting his Greggs pasty intake – he now has a monthly quota – it’s obviously a cheaper habit than my Amazon addiction but every little helps right?
I’ve also started reading Neurotribes by Steve Silberman which I’ve slowly gotten into. Anyone who knows me well will know that I’m not really a big reader and often start books and don’t get past the first chapter so Joel thought it was hilarious when this massive (and I mean massive it has 534 pages!) book arrived from Amazon – this was before the internet shopping ban! I found the first chapter challenging to read (all 43 pages of it) as it was looking at 18th Century scientists with quirky ASD traits which didn’t particularly grip me but I continued reading – mainly to prove a point to Joel!
I’m pleased that I persevered and read on as the following chapter told the stories of some more up to date families which I found much for interesting and helpful. One quote from a lady called Susan Senator who herself wrote a book called Making Peace with Autism really impacted me.
“We help Nate become the best he can be, and in the process he makes us who we are. We cannot be typical, we cannot be normal. But this is certain: We are OK.”
This is so true. God has used Toby to shape me and make me in to the person that I am today. We’re not ‘normal’ and although life can be challenging…we are ok! This is our journey and it’s nothing like how I imagined life would be but we’re not down about it we are OK because I believe in a God who made Toby and loves Toby and us which doesn’t make the challenges we face disappear but we have hope and we are ok.