Sebbi and I
As the end of the year fast approaches, I have to review, revise and recapture the reasons for our business and personal lives.
Twenty-nine years ago, I found the reason for Berrybegood.
I am very private; only a few people know my personal life. In most cases, once people know me, they will change their behaviour towards me, possibly feeling sympathetic or sorry. In other cases, they will run a mile to stay away.
In the past, sympathy reduced my chances of advancing professionally, so I kept my private life private.
What made me change my mind was recent articles in the media about disabilities, autism, and nutrition.
Nearly thirty years ago, my son was born with Prader-Willi Syndrome, caused by the deletion of a chromosome; this affects growth and appetite, plus many other features. Then, twenty-nine ago, I was shocked and inconsolable; I couldn't believe that after perfect neonatal tests, this was happening. My baby looked so floppy, and I was hoping that he would live long enough to enjoy life; I was hoping for two years of life at the time. My anguish was so noticeable that a professor who specialised in this syndrome came to talk to me, and the first thing he told me was, "We all have syndromes; syndromes are what makes us" The difference is the spectrum of each syndrome; he also told me "your son will go to school and will play football", he did go to school but never managed to play football due to his weak muscle tone, he also has severe learning difficulties and an acute autistic spectrum which made him attend a special needs school.
We have managed to live with his learning disabilities, and his sisters have suffered firsthand the challenges of caring for his brother due to his appetite and autism. We were referred to many nutritionists and immediately discharged as Sebbi has a healthy diet and weight. He has some belly issues after eating due to a lack of muscle tone and food intolerances, but all his blood tests are exceptional. His behaviour connected with hunger and his disabilities has been extremely upsetting, having to leave places as he will scream and become violent if he doesn't get served quickly.
When he was little, this was hard but manageable, but as he got older, it became harder and harder. To have a peaceful child, we decided to follow a strict routine. We all need to look happy, optimistic, organised, and encouraging every day of the week.
As soon as there is an argument or an issue at home, he becomes agitated and extremely worried, making him even hungrier and more violent. Our house has become a residential home-like environment with cups of tea at specific times, lunch and dinner by a particular time, and not a minute late; we also go for walks and small activities in between while always appearing chilled and content.
Due to his autism and learning difficulties, he cannot go out by himself as he is terrified of sudden events, like a car approaching or any sudden issues that can cause extreme anxiety and distress. Also, Sebbi is nearly non-verbal but likes to pretend to chat and sing. He is very sociable but is unable to be independent. He feels vulnerable.
The nutritional side helped us understand how difficult it is for our bodies to digest meat and processed foods.
Due to his slow metabolism, he becomes like a person with a hangover if overeating; this also affects his mood, making him less likely to go out for walks and be active.
Humans somehow have the same behaviour toward food, and the effects of overeating and lack of exercise have the same patterns.
Many people talk about disabilities, especially autism. Nevertheless, as humans, we're destined to have features determined by our genetic makeup, but their spectrum is what makes them easier or more challenging to manage. We are all a little bit autistic.
Many people with disabilities or autism manage to find jobs, while others have severe difficulties dealing with basic everyday tasks.
As carers, We also learned that "genetics loads the gun, but environment pulls the trigger." We agree with this statement.
We have many challenges ahead, but we know that our bodies need good food, a good support group, and activity for optimal health.
Also, my husband was diagnosed a few years ago with Haemochromatosis; this is when the body builds an iron overload, another complex and challenging task for us that we have managed via good nutrition. I will leave this for another blog.
In the meantime, we have learned to live with all these challenges and realised that Andy (Sebbi) will never leave for college. (a pic of Sebbi in his beloved room)
