Alysia is the fourth born of our six children and she arrived 3 minutes before her twin brother, prematurely and by emergency caesarean. We knew before she was born that something was causing her not to thieve but, as we had chosen not to have any tests, Downs Syndrome was not mentioned.
I knew the moment I first saw her that she had Downs Syndrome but no one else mentioned it and didn’t mention it until, after two days, I asked to speak to a Doctor who confirmed that the medical staff had their suspicions but wanted me to bond with her before raising the subject. I then started to cry. I had preconceived ideas about what to expect, mainly born from negative press and t.v. portrayal and wondered how we would cope. I was totally unprepared for the absolute tidal wave of emotion that engulfed me and I continued to cry. Normality continued around me and I continued to cry until my husband asked if I felt any different towards her than I did our other children, ‘no’ I replied, ‘then we will cope’ came his response, and I knew he was right.
We sought expert advice but it focused on negativity and we were left feeling that Alysia would achieve very little. One Consultant even told us that she would be the child who was sitting in the corner of a room, dribbling. We never visited that Consultant again. Our lives had changed, we were no longer a mother and father but carers and this impacted on everyone close to us. We lost friends and family as we gradually became immersed in the world of disability, with so many appointments to attend and new skills we had to learn, it’s what we focused on and some relationships slipped away.
When it came time to choose a pre-school placement for Alysia we wanted her to attend the local mainstream one with her twin brother. We were refused at first because they felt they had no experience in dealing with disability – we convinced them that she should. It was a new area for us as well and we would walk it together. We looked at all options available to us when choosing Alysia’s schools and initially chose a mainstream faith option as we felt it offered her the best opportunities. It was a learning curve, quite steep at times, for us all but we found that if staff were open to new ideas and embraced the change, making adaptations, it worked. Alysia was well loved at school by staff and children alike but there was no denying that her learning was delayed and when we looked at sixth form we selected a special school. She finished sixth form with seven nationally recognised qualifications, included three BTEC and we couldn’t be more proud of her. Last year Alysia had a supported internship with Communicate2U at Coventry University where she taught OT students how to communicate better with people who struggle with communication and this led to her being invited to personally meet Prince William and Kate when they visited the site.
Our journey during the past 20 years has been one we have coped with, my husband was right, but it has been a rollercoaster of a ride. We have learnt medical procedures, learnt not to be afraid in a room full of professionals, learnt how to research, learnt BSL, learnt how to ignore prejudice and ignorance, learnt how to make our voices heard, the list is endless. But we have also gained so much, we look at life quite differently and our priorities have changed. We may have lost people but we have gained some of the most wonderful people who are walking a similar path and who we are privileged to call our friends. We have seen Alysia grow under the guidance of excellent educators and we have seen the miracle of surgery give her back her health. We have experienced so much as a family which has made us strong and united.
Alysia has a diagnosis of Downs Syndrome but she is so much more than that. She has a love, innocence and purity that pours from her and envelopes anyone lucky enough to know her. She has the most wicked sense of humour and the most contagious laugh and she just wants people to be happy. She sees the best in everyone and there isn’t a shred of nastiness in her. She loves music and singing and dancing, especially if there is sparkle and glitter involved and she always tries her best. How blessed we are. I feel things have advanced since we had Alysia, Downs Syndrome is being portrayed in a more positive light, as it should be, and I hope that any preconceived ideas parents of a newly diagnosed baby have, reflects this.
If I had any advice to give new parents it would be that their child is not defined by their diagnosis. You don’t always have to accept what you are told or being offered, don’t be afraid to use your voice as you know your child best. But most importantly never forget to love and laugh. Live as you would normally, if there are barriers, break them down, if there is negativity, walk away from it, be strong and you will cope.