The heartache of not being able to start a family when you want was devastating. After 3 rounds of IVF, my son Archie was born in 2013. My Dad died at 55, when I was 5 months pregnant.
My force of nature person was my dad. I was beyond broken as my childhood dream was to work in business together.
Archie received a diagnosis of Klinefelter’s Syndrome and Kyphoscoliosos at 6 months of age. When I compared what my son couldn’t do, he didn’t crawl, he wasn’t babbling, he didn’t eat at 6 months. I felt like a failure and isolated.
I took Archie to amazing group NHS Physiotherapy regularly to learn to walk, and explored what help we could get with support of Menphys-SOS Outreach service, and I quickly found out by networking with others, I would learn knowledge of how to claim Disability Allowance, or a Personal Transport Budget. Something that we were not told freely to me by health professionals or teachers.
Archie was excluded from wrap-around care at age 4 which meant I couldn’t hold my part time job, and my health deteriorated. Barriers included not being able to recruit 1:1 support, not covered by insurance policy, or he did not pass a risk assessment because of his curved spine. After 3 years and 3 school moves, we finally have been accepted in a mainstream provision with specialist support, because Archie has a right to belong. This took the court of justice to override the Local Authority to make this happen. I hope this justice means another family won’t have that fight. There is still more education and awareness with teachers, parents and the wider community, this is a crisis.
On our journey we have been told, when your son talks what will he achieve? What if he doesn’t ever talk. He thinks the same as his neuro-typical peers, he can’t yet express and communicate in the same way. What if you didn’t judge and remove those barriers? I have served as Archie’s voice for 8 years and realised not all children are given potential or the same opportunities. That is a child’s human right and there is knowledge to be shared on inclusion for all.
I am delighted to have met Melissa and Anna, the other directors at Xtra Potential, parents with the same energy for social justice and frustrations with the current system. We believe all children are equal, have the right to belong. There is life beyond the disability.