Put a name to it- Our Story for Family Fund

Each month, I have the honour of guest blogging for the Charity Organisation, Family Fund. They help, support & advise families raising children with disabilities & serious illness. I am beyond grateful for the support my family have received from them, providing my son with a much needed laptop when he was de-registered from school & was home schooled for a whole year & help with replacing his bed after completely destroying his last one due to aggressive meltdowns, lack of sleep & in ability to control his emotions. We get through some tough times. The following is our story.

Our Story

My son was late with all of his development milestones & compared to my daughters reaching theirs early, it was evident he was going to be more challenging and being the youngest of three, I did tend to ‘baby’ him more.

He continued to grow in his own way with a very funny & demanding personality, yet at nursery he kept himself to himself not particularly engaging in much social interaction. He coped well during his first year at school but looking back, the Foundation Stage is very much learning through play.

As a family, we made the decision to move to beautiful Cornwall, better lifestyle for us all & all three children benefitted hugely. The Primary school they attended was nothing less than idyllic, the classroom was always taken outside, it was a Forest School, very creative, less than 100 pupils & you could see the Ocean from the playground. If a child was going to create the perfect school, then this was it!

My son was extremely happy,the beach was on our doorstep, he had some wonderful friends & whilst academically a little challenged he was in his element. It had been picked up he possibly had dyslexia & dyspraxia (despite having incredible hand-eye co-ordination)

Fast forward a few years & things changed dramatically. My then Husband had left us & I was struggling financially & in general. A decision that I find hard to accept on a daily basis even now was made & I returned to The Midlands with my children. Plans put in place to enable making the right decision all fell apart & we were left homeless & even worse off financially.

This is where my son’s behaviour changed immensely.

He clearly couldn’t cope with the drastic change, the insecurity & inconsistencies of our new life. The pollution, the noise, the crowds. The only thing that gave him a little grounding was that I’d managed to get him back into his original school so there was some familiarity. But overall it was a living nightmare. He had no control over his emotions. Aggressive, dangerous, unstable, destructive, not sleeping, not going to school, daily sensory overload…I’d never been so sad, all three children had never been so sad. We were in a desperate situation.

His transition to Secondary school was even worse, ending in being de- registered which led to no school for an entire year.

A lot happened over the course of that year, we found a house we were able to rent (it had been very complicated as my financial situation was awful)

My son was diagnosed autistic & eventually I managed to get him an EHCP which got him into a great school.

My gut instinct was that he was autistic, my experience as a teaching assistant helped me to recognise traits but even knowing this in my heart, it was still devastating to see that diagnosis in black & white, however it was crucial to ‘put a name’ to it, as I knew that I could get him as much support as possible & that at least up to the age of 25, support would be there & I will fight to ensure this & to put things in place for beyond that age.

Things are still very difficult, money is tight, support from ‘family’ is practically none existent, he still has atrocious sleeping issues which can lead to weeks of no school attendance & I have little time for me, which I feel affects my parenting…we all need self care to be the best we can for ourselves & for others. But despite the difficulties, despite the dream life being swiped from us & the longing to return, at least we have a house & good support from school & opportunities around us.

I find that I learn best reading from other’s experiences,so what can I or anybody learn from all of this?

Find happiness & joy in the smallest things, it keeps you grateful for what you do have.

Keep the stability, I failed at this so my advice would be to keep the steady flow & make changes gradual if possible.

Learn to love life as it changes from one moment to the next.

Don’t be afraid to ask for help-you are your child’s voice, you want to help them achieve all they can in life, so grab that help for yourself too! It is not a sign of weakness.

Celebrate all the small victories. Autism unites children & adults by sharing certain traits whilst affecting them in different ways, so celebrate those moments where something was overcome or they faced a fear or they slept through the night!

Fight through those rough times & never lose hope.

My children are growing up. 18, 16 & 14 all moving on to new adventures & I can’t help but wonder what would’ve happened had we stayed in Cornwall. But there have been positives & everything happens for a reason & each day I am grateful that I have indeed been given this day.

I hope you have found some value in my story & that yours can be less complicated.

Jane x

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