Entry 1: introducing Freddie

Freddie had a rather dramatic entry into the world.

After a tedious but uneventful pregnancy he arrived five weeks early in a bit of a muddle. He had a condition called exompholas, which meant that most of his intestines were presented neatly packaged up, outside his body. I can remember looking at him and thinking "well that's not going to work" and him looking back as if to say "just you watch".

Freddie was one very, very ill baby. He went straight into theatre for major surgery and spent the next four weeks in intensive care fighting for his life. When he was a day old, a paediatrician and counsellor asked to see us together and told us that in addition to his obvious physical problems, they suspected that he also had Downs Syndrome and was progressively suffering multiple organ failure. Not the greatest day of my life.

Neither my husband nor I really knew anything about or had ever met anyone with Downs Syndrome. All I could think about was a very gloomy write up from my school biology text book illustrated with a rather unfortunate photograph. Needless to say, the idea of Downs Syndrome came with rather a lot of negative scenarios and not a lot of cheerful ones.

After the shock and the tears we pulled ourselves together and headed off down the path we'd found ourselves on. I can vividly remember walking out of the hospital with my son on Christmas Eve, determined that I was going to change the world for him. It's been a humbling experience over the last 10 years to discover that lots of things had already changed hugely; we just hadn't known.

When he was born, I was in the middle of a major project at work and was keen to get back to finish it off. I remember wondering what on earth I was going to do about child care and decided to simply ask my eldest son's nursery if they would be able to have him. Their response was wonderful - "he's a baby" they said "we can do babies." "Catheter? don't worry, one of the girls wants to be a nurse, I'm sure she can be trained to do it!" He went there for two days a week until he started school.

In the last 10 years Freddie's major medical issues have been with his hearing and various bits of his body not doing what they're supposed to do and having to be fixed. He's had 11 operations and feels very at home at Bristol Children's Hospital. Last year he had bone anchored hearing aids fitted in Birmingham which have made a huge difference to his connection with the world - you can read more about the aids on our family website.

However, his speech is very limited and he can only really be understood by close family and he relies heavily on non verbal communication and a sign language called Makaton. He learns very slowly and needs to have new skills constantly repeated and re-enforced. He likes his world to be predictable which takes some lateral thinking and forward planning for holidays and outings.

He is in mainstream school with a Statement of Special Education Needs and full time support. It's been a great opportunity, but we have had a number of battles including having to go to an SEN tribunal to get things set up properly. The seemingly endless bureaucracy and appeals we've endured to secure the support he needs has been without doubt the most difficult aspect of having a disabled child.

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