Do something that scares you today

This blog was written specifically for ‘Family Fund’

Family Fund is the UK’s largest charity providing grants for families raising disabled or seriously ill children and young people. Last year, they provided 89,101 grants or services worth over £33 million to families across the UK.

Family Fund has received extra funding worth £10 million from the Department for Education to provide grants for families on low incomes raising disabled or seriously ill children in England this year.

This emergency funding has been provided in response to the crisis presented by the Coronavirus pandemic and will help more parents and carers to look after their children. Families can apply for grants to make their lives easier while implementing social distancing measures, including computers and tablets, outdoor play equipment and sensory toys.

Click this link to find out more about how you can apply.

If you know me pretty well then you will know I never ask for help. I grew up being told ‘if you want something, word hard and go get it’, ‘if you want something done, do it yourself’, ‘if it’s too good to be true, then it usually is’, you get the idea.

At the time I felt pretty hard done by but it’s those imprinted early year traits that make me the strong, independent and motivated woman that I am today.

Whilst it’s great doing most things on my own slowly over time I’ve let small parts of my guard down and allowed selected help. Sounds crazy, right? You honestly have no idea.

I hate being let down it effects me in a way I cannot explain. So I believe if I do everything myself I can still maintain those friendships/ relationships without tempting things to go wrong.

In 2015 after fighting for so long for support and help for my Son he received a diagnoses (aged 2) of severe ASD amongst other issues.

My world crumbled along with everything in it. Suddenly I felt completely powerless a feeling I wasn’t used to.

‘I have a cousin who has Autism, I understand’ these are just words. Until you have a child of your own with ASD/ special needs you will never fully understand the impact this has on you, your family, your whole life, the sacrifices, changes, adaptations you have to make, the added worries/ anxieties and that’s just the tip of the iceberg.

Overnight I turned into a keyboard warrior thinking I could cope and do it alone. I spent endless sleepless nights researching and trying to find a cure. The Family Fund were one of the first organisations I encountered. They’re a charity I hold close to my heart. A charity who have helped my little family over the past 4-5 years never asking for anything in return.

I reached out to them some years ago not really knowing what to expect. I remember having a conversation with a woman and describing Riley to her. She gave me some ideas about the type of things I could apply for. Within just a few weeks we received an brand new ipad with a screen protector and military tested case!!

I was immensely overwhelmed with the kindness and generosity, I think I cried! You’ll see Riley with his iPad in almost every photo I post to social media. This has become his security blanket and although he has it with him 99% of the time he’s not necessarily playing on it.

An iPad was the very first thing I requested. We have also been to Disneyland Paris, Center Parcs and Butlins for a few nights as a family. Very recently I have applied for an outhouse. This is to store the hot tub so Riley can access this all year round for his sensory processing disorder.

As you can see below the hot tub was a very good purchase and used almost daily this past Summer.

At the very start I felt guilty, embarrassed to ask for help. I probably could have saved over the months and paid for these myself. Life was already a struggle, money was tight and my stress levels were through the roof.

What the Family Fund has given to my family and I, I cannot put a price on. They’ve helped provide my Son with a tool, an escape that allows him to cope in a world he’s still trying to understand.

Like myself, they have my child’s best interest at heart. They want to help provide something to make his already confusing and challenging life easier, happier and more inclusive.

Riley sync’s his iPad with another device so they play the same things at the same time down to the second. Whether this is in English or a different language via Youtube kids.

Riley enjoys playing songs and rhymes over and over again. He has started copying through echolalia. He is understanding more Makaton selecting certain Mr Tumble programmes part way through and requesting I copy these action. Sometimes he will allow me to support him to copy these actions hand over hand.

Developmentally the ipad has hugely impacted Riley and it allows my Daughter and I to live a relatively ‘normal’ life (whatever that is) We both know if Riley has the security and comfort of his ipad then he should be ok to adjust with our day whatever we may have planned.

Asking for help is scary, believe me I know! When I apply for funding now I think, ‘what’s best for Riley? What will help to make his life easier, happier and more fulfilled? What will he enjoy?

You can now apply completely online, its never been easier. I’d love to know if you have applied in the past with Family Fund or if after reading this blog you are going to apply for funding. I’ll leave my social links below.

Do something that scares you today!

Thanks for reading!

Clare xo

Instagram – @clareleexo

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