Each year, the charity Mencap ask us all to join together for Learning Disability Week; a time to share information, campaign together, and celebrate achievements. This year is no exception, and the cleverly thought-out theme for #LDWeek2104 is 'firsts'.
When you have a child with additional needs, health issues or a disability or any kind, tiny steps forward in their development become huge achievements. All bring emotions that none of us can prepare ourselves for. Over the course of Natty's life, we have witnessed firsts that we either dared not hope for, or were simply too afraid to take for granted.
All we could think of in the early days was her survival, but even that painful experience has made us more appreciative parents. More grateful. Since then she has experienced much the same firsts as any child; first days at nursery and school, first friendships, invitations to parties, first swimming lesson, holiday, bike.
Mencap are encouraging us to share these ordinary firsts throughout the course of the week, using the hashtag #LDWeek14. You can read inspiring posts, such as Your First Day at School by Jane Raca on their website all week. Each day sees a different topic, covering important areas such as love and relationships, work and hobbies, all proving that those with a learning disability can overcome adversity, prejudice and ignorance to experience incredible firsts.
Miguel Tidela de la Fuente runs a project to support good sexual health and relationships for adults with learning disabilities, a topic that is often off limits. Read his vital post about safeguearding, consent, appropriacy and healthy affection which he see as an integral part of the human experience. It might be early days for your child, but we should all be aiming for their happiness in adulthood and I found this post invaluable.
I began thinking about the milestones we had seen with our children. I waited to see which floated to the top of my consciousness. One seemingly small but significant and memorable first for us was that of a raspberry. No, not the squishy fruit with a propensity to stain, but the rather rude noise you make with your tongue. Natty was two years old when she underwent her keyhole heart surgery at Bristol Children's Hospital. It was truly the most terrifying time of our lives as parents, our minds taking us to all the worst case scenarios imaginable. We paced and waited while her life was in the hands of strangers, unable to speak, just crying, the fear too much to bear.
The call came and we dashed to her side for the moment she awoke. The next hours were spent holding her and watching her slowly return to us. But the fears didn't leave my soul. Was the operation a success? Was she damaged by it in anyway? Would she make a full recovery?
The surgeon came to talk to us, to discuss the procedure. And in a flash Natty opened her eyes, turned to him, stuck out her tongue and let out the longest, most rasping wet raspberry you have ever heard. A huge great big trumpeting, soggy slop of a raspberry.
Our eyes caught the surgeon's, our thoughts connected and we all laughed. Natty had shown us in that first communication since the operation, that first precious raspberry, that she was going to be okay. Not only that, but she had broken the tension, and physically lifted a weight from our shoulders. She couldn't have said it any more clearly if she had been able to vocalise.
Which of your child's firsts stick firmly in your mind? Which have meant the most to you over the years?
She has campaigned tirelessly for inclusion, equitable education and healthcare over the years, and trains medics and teachers to this aim.
Hayley, along with daughter Mia, has published a book for children called I Love You Natty as well as contributing to many other books and publications, such as The Huffington Post, Special Needs Jungle, The Telegraph and Nursing Times.
She delivered a TedX Talk dispelling the myths around the condition and appeared in Sally Phillips’ BBC documentary A World Without Downs.
Hayley is often called upon to give comment in the media and she and her model daughter, Natty have popped up on The Lorraine Show, Channel Four News, Loose Women and more, but her stories always remain extraordinarily ordinary.
- Campaigning for inclusive education for children with Down’s syndrome - May 18, 2022
- Heidi’s Down’s syndrome abortion case: It’s complicated - November 10, 2021
- 21 Resources for Trisomy 21 on World Down Syndrome Day - March 21, 2018
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